Re: [TMIC] Looking for input. solving a problem urinating
Janice your experience mirrors mine. I seem to be able to empty my bladder during the day, but at night it seems I can either be soaked in the am, or find I am fairly dry and I never know which one it is going to be. I also wear plenty of protection at night and also get up at least once during the night to go. Patti - Wisconsin On Mon, Nov 12, 2012 at 10:25 PM, Janice Nichols jan...@centurytel.netwrote: Bridget, glad you are doing to see a someone about the bladder retention.I had a urology specialist and it did really help.Still have problems, but can empty my bladder completely on my own.Problems are at night when I make a lot of urine and don’t feel it enough to wake up and go to the bathroom.I seem to go in cycles of heavy flow of urine at night and then a short while of being fairly dry when I wake up in the morning.Go to bed with lots of protection.I know that I will probably not ever be much better with this problem, but at least I do not have to cath any more. Janice *From:* a-ry...@comcast.net *Sent:* Monday, November 12, 2012 2:49 PM *To:* Jde heyjude48...@aol.com *Cc:* tmic tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. solving a problem urinating *Is it just as easy as regular cathing?* Yes, the same. *Do you have to deal with leaking and how do you deal with it?* If you had asked me yesterday I'd have said the only sign of leaking was a wetness at the hole. But yesterday I was rudely reminded of a vulnerability all indwelling caths share: if you pull the cath by accident you injure the bladder, and the bladder reacts with both sphincter and detrusor spasms. And a bit of blood in the bag. The detrusor wins, and a gush of wetness follows. Alton, with a month of unanswered mail - Original Message - From: Jde heyjude48...@aol.com To: a-ry...@comcast.net Sent: Fri, 28 Sep 2012 17:20:46 - (UTC) Subject: Re: [TMIC] Looking for input. solving a problem urinating *Hi Alton,* ** *I don't know if you remember me, but I used to be on TMIC site several years ago and then go tired of all of the arguements and signed off for a while. Anyway, I am back and am interested in suprapubic catheters.* ** *One of my doctors is really pushing me to get it done and Urologist does not want me to. I'm not sure what to do. How are you doing after having gotten it done? Is it just as easy as regular cathing? Do you have to deal with leaking and how do you deal with it?* *Thanks,* *Jude Hoops* ** Practice Random Acts of Kindness -Original Message- From: a-ryder a-ry...@comcast.net To: Bridget Skinner ibridg...@gmail.com Cc: Janice Nichols jan...@centurytel.net; john snodgrass jcs...@yahoo.com; Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list tmic-list@eskimo.com Sent: Sun, Sep 9, 2012 11:12 am Subject: Re: [TMIC] Looking for input. solving a problem urinating Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. Bridget, the bladder problem has an easy solution - a catheter, either intermittent or indwelling (also called a Foley catheter.) I had a spinal infarction on 1997 that, amongst other blessings, left me with the same the same bladder symptom - the detrusor**muscles insisted on voiding while the bladder sphincter refused to allow it. I was caught in the middle of the conflict. The solution was to use a catheter, a soft tube with a closed end and a hole in the side just before the end. Inserted into the urethra through the sphincter to the bladder, it drained the bladder. After a few months of using this “straight cath.” I switched to a Foley, a cath with a ballon on the end that could be inflated with water once it was in the bladder; the ballon kept the cath from being expelled. I used a Foley from 1998 until fifteen weeks ago when I had a suprapubic cath installed. Pros and cons: Intermittent: pro:you can do it forever con:the bother (compared to the alternatives) of finding a urinal Indwelling: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:years of use can damage the urethra if you are not careful Suprapubic: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:you now have a tube coming out your belly Alton - Original Message - From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Sent: Sat, 08 Sep 2012 22:49:36 - (UTC) Subject: Re
Re: [TMIC] Looking for input. solving a problem urinating
Is it just as easy as regular cathing? Yes, the same. Do you have to deal with leaking and how do you deal with it? If you had asked me yesterday I'd have said the only sign of leaking was a wetness at the hole. But yesterday I was rudely reminded of a vulnerability all indwelling caths share: if you pull the cath by accident you injure the bladder, and the bladder reacts with both sphincter and detrusor spasms. And a bit of blood in the bag. The detrusor wins, and a gush of wetness follows. Alton, with a month of unanswered mail - Original Message - From: Jde heyjude48...@aol.com To: a-ry...@comcast.net Sent: Fri, 28 Sep 2012 17:20:46 - (UTC) Subject: Re: [TMIC] Looking for input. solving a problem urinating Hi Alton, I don't know if you remember me, but I used to be on TMIC site several years ago and then go tired of all of the arguements and signed off for a while. Anyway, I am back and am interested in suprapubic catheters. One of my doctors is really pushing me to get it done and Urologist does not want me to. I'm not sure what to do. How are you doing after having gotten it done? Is it just as easy as regular cathing? Do you have to deal with leaking and how do you deal with it? Thanks,Jude Hoops Practice Random Acts of Kindness -Original Message- From: a-ryder a-ry...@comcast.net To: Bridget Skinner ibridg...@gmail.com Cc: Janice Nichols jan...@centurytel.net; john snodgrass jcs...@yahoo.com; Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list tmic-list@eskimo.com Sent: Sun, Sep 9, 2012 11:12 am Subject: Re: [TMIC] Looking for input. solving a problem urinating Also, I have a problem urinating. I have to push really hard no matter how bad I have to go.Bridget, the bladder problem has an easy solution - a catheter, either intermittent or indwelling (also called a Foley catheter.)I had a spinal infarction on 1997 that, amongst other blessings, left me with the same the same bladder symptom - the detrusormuscles insisted on voiding while the bladder sphincter refused to allow it. I was caught in the middle of the conflict. The solution was to use a catheter, a soft tube with a closed end and a hole in the side just before the end. Inserted into the urethra through the sphincter to the bladder, it drained the bladder. After a few months of using this “straight cath.” I switched to a Foley, a cath with a ballon on the end that could be inflated with water once it was in the bladder; the ballon kept the cath from being expelled. I used a Foley from 1998 until fifteen weeks ago when I had a suprapubic cath installed.Pros and cons:Intermittent:pro:you can do it forevercon:the bother (compared to the alternatives) of finding a urinalIndwelling:pro:you need empty accumulated urine only twice a daycon:you wear a bag on your leg (day) and connect to a large bag at nightcon:the cath must be changed at least once a monthcon:years of use can damage the urethra if you are not careful Suprapubic:pro:you need empty accumulated urine only twice a daycon:you wear a bag on your leg (day) and connect to a large bag at nightcon:the cath must be changed at least once a monthcon:you now have a tube coming out your bellyAlton- Original Message - From: Bridget Skinner ibridg...@gmail.comTo: Janice Nichols jan...@centurytel.netCc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.comSent: Sat, 08 Sep 2012 22:49:36 - (UTC)Subject: Re: [TMIC] Looking for input.I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support.
Re: [TMIC] Looking for input. solving a problem urinating
Bridget, glad you are doing to see a someone about the bladder retention.I had a urology specialist and it did really help.Still have problems, but can empty my bladder completely on my own.Problems are at night when I make a lot of urine and don’t feel it enough to wake up and go to the bathroom.I seem to go in cycles of heavy flow of urine at night and then a short while of being fairly dry when I wake up in the morning.Go to bed with lots of protection.I know that I will probably not ever be much better with this problem, but at least I do not have to cath any more. Janice From: a-ry...@comcast.net Sent: Monday, November 12, 2012 2:49 PM To: Jde Cc: tmic Subject: Re: [TMIC] Looking for input. solving a problem urinating Is it just as easy as regular cathing? Yes, the same. Do you have to deal with leaking and how do you deal with it? If you had asked me yesterday I'd have said the only sign of leaking was a wetness at the hole. But yesterday I was rudely reminded of a vulnerability all indwelling caths share: if you pull the cath by accident you injure the bladder, and the bladder reacts with both sphincter and detrusor spasms. And a bit of blood in the bag. The detrusor wins, and a gush of wetness follows. Alton, with a month of unanswered mail - Original Message - From: Jde heyjude48...@aol.com To: a-ry...@comcast.net Sent: Fri, 28 Sep 2012 17:20:46 - (UTC) Subject: Re: [TMIC] Looking for input. solving a problem urinating Hi Alton, I don't know if you remember me, but I used to be on TMIC site several years ago and then go tired of all of the arguements and signed off for a while. Anyway, I am back and am interested in suprapubic catheters. One of my doctors is really pushing me to get it done and Urologist does not want me to. I'm not sure what to do. How are you doing after having gotten it done? Is it just as easy as regular cathing? Do you have to deal with leaking and how do you deal with it? Thanks, Jude Hoops Practice Random Acts of Kindness -Original Message- From: a-ryder a-ry...@comcast.net To: Bridget Skinner ibridg...@gmail.com Cc: Janice Nichols jan...@centurytel.net; john snodgrass jcs...@yahoo.com; Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list tmic-list@eskimo.com Sent: Sun, Sep 9, 2012 11:12 am Subject: Re: [TMIC] Looking for input. solving a problem urinating Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. Bridget, the bladder problem has an easy solution - a catheter, either intermittent or indwelling (also called a Foley catheter.) I had a spinal infarction on 1997 that, amongst other blessings, left me with the same the same bladder symptom - the detrusormuscles insisted on voiding while the bladder sphincter refused to allow it. I was caught in the middle of the conflict. The solution was to use a catheter, a soft tube with a closed end and a hole in the side just before the end. Inserted into the urethra through the sphincter to the bladder, it drained the bladder. After a few months of using this “straight cath.” I switched to a Foley, a cath with a ballon on the end that could be inflated with water once it was in the bladder; the ballon kept the cath from being expelled. I used a Foley from 1998 until fifteen weeks ago when I had a suprapubic cath installed. Pros and cons: Intermittent: pro:you can do it forever con:the bother (compared to the alternatives) of finding a urinal Indwelling: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:years of use can damage the urethra if you are not careful Suprapubic: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:you now have a tube coming out your belly Alton - Original Message - From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Sent: Sat, 08 Sep 2012 22:49:36 - (UTC) Subject: Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number
Re: [TMIC] Looking for input. solving a problem urinating
Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. Bridget, the bladder problem has an easy solution - a catheter, either intermittent or indwelling (also called a Foley catheter.) I had a spinal infarction on 1997 that, amongst other blessings, left me with the same the same bladder symptom - the detrusor muscles insisted on voiding while the bladder sphincter refused to allow it. I was caught in the middle of the conflict. The solution was to use a catheter, a soft tube with a closed end and a hole in the side just before the end. Inserted into the urethra through the sphincter to the bladder, it drained the bladder. After a few months of using this “straight cath.” I switched to a Foley, a cath with a ballon on the end that could be inflated with water once it was in the bladder; the ballon kept the cath from being expelled. I used a Foley from 1998 until fifteen weeks ago when I had a suprapubic cath installed. Pros and cons: Intermittent: pro:you can do it forever con:the bother (compared to the alternatives) of finding a urinal Indwelling: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:years of use can damage the urethra if you are not careful Suprapubic: pro:you need empty accumulated urine only twice a day con:you wear a bag on your leg (day) and connect to a large bag at night con:the cath must be changed at least once a month con:you now have a tube coming out your belly Alton - Original Message - From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Sent: Sat, 08 Sep 2012 22:49:36 - (UTC) Subject: Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support.
Re: [TMIC] Looking for input.
I did self cathing for about 2 years.I no longer have to do it.I can now clear my bladder on my own. Keep us posted. Janice From: Ibridgets Sent: Saturday, September 08, 2012 6:56 PM To: jan...@centurytel.net Cc: jcs...@yahoo.com ; xbeecla...@gmail.com ; j.d...@shaw.ca ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I will be calling the TX urogynecology association on Monday to make an appt and see how quickly I can get in. Apparently she has some type of therapy she can do in her office and if that doesn't work it will be self cath. I will let u all know how it works as soon as I have my first appt and will let u know how this appt goes and I am praying for all of us. Sent via the Samsung Galaxy S™ II Skyrocket™, an ATT 4G LTE smartphone. Original message Subject: Re: [TMIC] Looking for input. From: Janice Nichols jan...@centurytel.net To: Bridget Skinner ibridg...@gmail.com CC: john snodgrass jcs...@yahoo.com,Elizabeth Clark xbeecla...@gmail.com,Janet Dunn j.d...@shaw.ca,tmic-list@eskimo.com Well at least you have found some answers. That is always a plus. Let me know how the bladder retention goes – I think most of us have a problem in some way with our bladders and it will be interesting to see what they find with you. Thank you for sharing – we appreciate it. Janice From: Bridget Skinner Sent: Saturday, September 08, 2012 5:49 PM To: Janice Nichols Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.net wrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles.Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg
Re: [TMIC] Looking for input.
I think scientists need to hear about thisHow wonderful. Janice From: Dalton Garis Sent: Saturday, September 08, 2012 8:03 PM To: Janice Nichols ; Bridget Skinner Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I need to deeply thank someone on this email tree; She suggested I try taking a teaspoonful of mustard to try to work on these seizures. Well, it's been 6 days now, and I haven't gotten a seizure since beginning to take a fat teaspoonful of mustard twice per day. How do you like that THANK YOU ! Please remind me who you are. Best to all, Dalton Dalton H. Garis Flushing, Queens New York, USA Mobile: 718-838-0437 Landline: 917-285-2047 From: Janice Nichols jan...@centurytel.net Date: Saturday, 8 January 2012 7:18 PM To: Bridget Skinner ibridg...@gmail.com Cc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 8 Sep 2012 16:18:10 -0700 Well at least you have found some answers. That is always a plus. Let me know how the bladder retention goes – I think most of us have a problem in some way with our bladders and it will be interesting to see what they find with you. Thank you for sharing – we appreciate it. Janice From: Bridget Skinner Sent: Saturday, September 08, 2012 5:49 PM To: Janice Nichols Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.net wrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles.Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other
Re: [TMIC] Looking for input.
My doctor encouraged something called double voiding - going to the bathroom, then coming back in a few minutes to go again. It's frustrating sometimes not to be able to get it all done at once, but it helps. Barbara H. Http:// barbarah.wordpress.com Sent from my iPhone On Sep 9, 2012, at 9:10 PM, Janice Nichols jan...@centurytel.net wrote: I did self cathing for about 2 years.I no longer have to do it.I can now clear my bladder on my own. Keep us posted. Janice From: Ibridgets Sent: Saturday, September 08, 2012 6:56 PM To: jan...@centurytel.net Cc: jcs...@yahoo.com ; xbeecla...@gmail.com ; j.d...@shaw.ca ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I will be calling the TX urogynecology association on Monday to make an appt and see how quickly I can get in. Apparently she has some type of therapy she can do in her office and if that doesn't work it will be self cath. I will let u all know how it works as soon as I have my first appt and will let u know how this appt goes and I am praying for all of us. Sent via the Samsung Galaxy S™ II Skyrocket™, an ATT 4G LTE smartphone. Original message Subject: Re: [TMIC] Looking for input. From: Janice Nichols jan...@centurytel.net To: Bridget Skinner ibridg...@gmail.com CC: john snodgrass jcs...@yahoo.com,Elizabeth Clark xbeecla...@gmail.com,Janet Dunn j.d...@shaw.ca,tmic-list@eskimo.com Well at least you have found some answers. That is always a plus. Let me know how the bladder retention goes – I think most of us have a problem in some way with our bladders and it will be interesting to see what they find with you. Thank you for sharing – we appreciate it. Janice From: Bridget Skinner Sent: Saturday, September 08, 2012 5:49 PM To: Janice Nichols Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.net wrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they stillrefuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles.Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problemswetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I
Re: [TMIC] Looking for input.
Thank you Barbara, I had never thought to do that. One of the most frustrating things for me is right before bedtime. I remember not being able to really get comfy until I voided my bladder, even if I was settled in, I would have to get to go before sleep. Now I push before bedtime only to get a couple pushes to get most of it out but I just can't get the rest out no matter how hard I push. I just hate it. I never even thought to try again, I figured that was it. And, thought I had done enough pushing for one night just to get out the little bit I did. I have wet the bed twice and it is very embarrassing to admit. My husband has been really good at making me feel like I have nothing to be embarrassed about. Honestly, those two times when I woke I have never felt such an empty bladder. Isn't that crazy??? Something that seems so awful makes you feel relieved for those couple times. Argghhh - it is emotionally difficult to get my arms around all of this. So thank you, I will try that tonight. Bridget On Sun, Sep 9, 2012 at 9:08 PM, Barbara H. barbara...@gmail.com wrote: My doctor encouraged something called double voiding - going to the bathroom, then coming back in a few minutes to go again. It's frustrating sometimes not to be able to get it all done at once, but it helps. Barbara H. Http:// barbarah.wordpress.com Sent from my iPhone On Sep 9, 2012, at 9:10 PM, Janice Nichols jan...@centurytel.net wrote: I did self cathing for about 2 years.I no longer have to do it.I can now clear my bladder on my own. Keep us posted. Janice *From:* Ibridgets ibridg...@gmail.com *Sent:* Saturday, September 08, 2012 6:56 PM *To:* jan...@centurytel.net *Cc:* jcs...@yahoo.com ; xbeecla...@gmail.com ; j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. I will be calling the TX urogynecology association on Monday to make an appt and see how quickly I can get in. Apparently she has some type of therapy she can do in her office and if that doesn't work it will be self cath. I will let u all know how it works as soon as I have my first appt and will let u know how this appt goes and I am praying for all of us. Sent via the Samsung Galaxy S™ II Skyrocket™, an ATT 4G LTE smartphone. Original message Subject: Re: [TMIC] Looking for input. From: Janice Nichols jan...@centurytel.net To: Bridget Skinner ibridg...@gmail.com CC: john snodgrass jcs...@yahoo.com,Elizabeth Clark xbeecla...@gmail.com,Janet Dunn j.d...@shaw.ca,tmic-list@eskimo.com Well at least you have found some answers. That is always a plus. Let me know how the bladder retention goes – I think most of us have a problem in some way with our bladders and it will be interesting to see what they find with you. Thank you for sharing – we appreciate it. Janice *From:* Bridget Skinner ibridg...@gmail.com *Sent:* Saturday, September 08, 2012 5:49 PM *To:* Janice Nichols jan...@centurytel.net *Cc:* john snodgrass jcs...@yahoo.com ; Elizabeth Clarkxbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.netwrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles. Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who
Re: [TMIC] Looking for input.
I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.netwrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles. Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice *From:* Bridget Skinner ibridg...@gmail.com *Sent:* Monday, June 25, 2012 9:32 PM *To:* john snodgrass jcs...@yahoo.com *Cc:* Janice Nichols jan...@centurytel.net ; Elizabeth Clarkxbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! -- *From:* Bridget Skinner ibridg...@gmail.com *To:* Janice Nichols jan...@centurytel.net *Cc:* Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com *Sent:* Monday, June 25, 2012 8:16 PM *Subject:* Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has
Re: [TMIC] Looking for input.
Well at least you have found some answers. That is always a plus. Let me know how the bladder retention goes – I think most of us have a problem in some way with our bladders and it will be interesting to see what they find with you. Thank you for sharing – we appreciate it. Janice From: Bridget Skinner Sent: Saturday, September 08, 2012 5:49 PM To: Janice Nichols Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.net wrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles.Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 8:16 PM Subject: Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been
Re: [TMIC] Looking for input.
I need to deeply thank someone on this email tree; She suggested I try taking a teaspoonful of mustard to try to work on these seizures. Well, it's been 6 days now, and I haven't gotten a seizure since beginning to take a fat teaspoonful of mustard twice per day. How do you like that THANK YOU ! Please remind me who you are. Best to all, Dalton Dalton H. Garis Flushing, Queens New York, USA Mobile: 718-838-0437 Landline: 917-285-2047 From: Janice Nichols jan...@centurytel.net Date: Saturday, 8 January 2012 7:18 PM To: Bridget Skinner ibridg...@gmail.com Cc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 8 Sep 2012 16:18:10 -0700 Well at least you have found some answers. That is always a plus. Let me know how the bladder retention goes I think most of us have a problem in some way with our bladders and it will be interesting to see what they find with you. Thank you for sharing we appreciate it. Janice From: Bridget Skinner mailto:ibridg...@gmail.com Sent: Saturday, September 08, 2012 5:49 PM To: Janice Nichols mailto:jan...@centurytel.net Cc: john snodgrass mailto:jcs...@yahoo.com ; Elizabeth Clark mailto:xbeecla...@gmail.com ; Janet Dunn mailto:j.d...@shaw.ca ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.net wrote: Bridget, Are you sure you can¹t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles.Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner mailto:ibridg...@gmail.com Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass mailto:jcs...@yahoo.com Cc: Janice Nichols mailto:jan...@centurytel.net ; Elizabeth Clark mailto:xbeecla...@gmail.com ; Janet Dunn mailto:j.d...@shaw.ca ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out
RE: [TMIC] Looking for input.
Hi Dalton, I was not originally a part of this email tree; however I am so happy to hear that you have found some relief ~ and with mustard, of all things!My guess is that mustard has many good properties. Here's to no more seizures! Be well, Linda (Boise, ID) Date: Sat, 8 Sep 2012 21:03:58 -0400 Subject: Re: [TMIC] Looking for input. From: malugss...@gmail.com To: jan...@centurytel.net; ibridg...@gmail.com CC: jcs...@yahoo.com; xbeecla...@gmail.com; j.d...@shaw.ca; tmic-list@eskimo.com I need to deeply thank someone on this email tree; She suggested I try taking a teaspoonful of mustard to try to work on these seizures. Well, it's been 6 days now, and I haven't gotten a seizure since beginning to take a fat teaspoonful of mustard twice per day. How do you like that THANK YOU ! Please remind me who you are. Best to all, Dalton Dalton H. GarisFlushing, QueensNew York, USAMobile: 718-838-0437Landline: 917-285-2047 From: Janice Nichols jan...@centurytel.net Date: Saturday, 8 January 2012 7:18 PM To: Bridget Skinner ibridg...@gmail.com Cc: john snodgrass jcs...@yahoo.com, Elizabeth Clark xbeecla...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Sat, 8 Sep 2012 16:18:10 -0700 Well at least you have found some answers. That is always a plus. Let me know how the bladder retention goes – I think most of us have a problem in some way with ourbladders and it will be interesting to see what they find with you. Thank you for sharing – we appreciate it.Janice From: Bridget Skinner Sent: Saturday, September 08, 2012 5:49 PMTo: Janice Nichols Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I wanted to let you know as promised that i FINALLY got insurance in place and I saw my neurologist. I have something called myoclonus and am being treated for the jerking. The twitching in my fingers is because of my brain knowing how to type fast and my spine is keeping it to do so. I understand what he told me but it is difficult to explain. But, the jerking and the twitching are different. The inflammation from the TM did a number on my spine but at least the jerking isn't as scary knowing it can, and is, being treated. I feel relieved and hope the medication works. I have a referral to see someone about my bladder retention issues also.Thank you for your support. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.net wrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles.Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my
Re: [TMIC] Looking for input.
Wow, Janice! I wish I would have taken your advice sooner. The reason I couldn't get in to my neurologist, in my mind, was because my insurance doesn't go into effect until July 15. But, they still couldn't get me in until August 1. I ended up in the emergency room last night. I was having convulsions, fell down. bit my lip and tongue and couldn't speak. The entire time convulsing. My husband called 911. After many ER tests, brain scan, blood work, xray for pneumonia, etc. I had a 103 degree fever and they couldn't find anything else. They let me go saying it was most likely a virus causing the fever. I am just getting around today and i will be calling the doc as soon as noon hour is up. I just can't believe that is it. Of course they didn't scan my spine. This is gonna cost a fortune. I want to trust what the er says but before i was diagnosed with TM i went to an emergency room 3 times, paralyzed, and they only did brain scans and as soon as we decided on a new emergency room they ran a spinal scan did they admit me and, soon after, diagnose me with TM This thing going on right now is a whole different type of scary. Can't be compared. Of course being paralyzed and all of the things that led up to complete paralysis from the waste down is by far the scariest thing that ever happened. But this thing is pretty bad. Now I am just afraid to go to sleep because I don't want to wake up convulsing. It only happens when I wake from a sleep. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.netwrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles. Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice *From:* Bridget Skinner ibridg...@gmail.com *Sent:* Monday, June 25, 2012 9:32 PM *To:* john snodgrass jcs...@yahoo.com *Cc:* Janice Nichols jan...@centurytel.net ; Elizabeth Clarkxbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! -- *From:* Bridget Skinner ibridg...@gmail.com *To:* Janice Nichols jan...@centurytel.net *Cc:* Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com *Sent:* Monday, June 25, 2012 8:16 PM *Subject:* Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms
Re: [TMIC] Looking for input.
Bridget, So you still can’t see the doc until August 1? What happened when you called the doc after the noon hour and told them what was happening? I am so sorry this is happening to you. As far as I know, it does take an MRI of the spine and/or a spinal tap too diagnose TM.I had both done and then a long stay in the hospital. Please get back to me and let me know if you got in to the doc, or at least will get in sooner.Can’t believe your doc would have a patient with convulsions and not want to see you immediately.Keep me posted. Janice From: Bridget Skinner Sent: Friday, June 29, 2012 12:24 PM To: Janice Nichols Cc: john snodgrass ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Wow, Janice! I wish I would have taken your advice sooner. The reason I couldn't get in to my neurologist, in my mind, was because my insurance doesn't go into effect until July 15. But, they still couldn't get me in until August 1. I ended up in the emergency room last night. I was having convulsions, fell down. bit my lip and tongue and couldn't speak. The entire time convulsing. My husband called 911. After many ER tests, brain scan, blood work, xray for pneumonia, etc. I had a 103 degree fever and they couldn't find anything else. They let me go saying it was most likely a virus causing the fever. I am just getting around today and i will be calling the doc as soon as noon hour is up. I just can't believe that is it. Of course they didn't scan my spine. This is gonna cost a fortune. I want to trust what the er says but before i was diagnosed with TM i went to an emergency room 3 times, paralyzed, and they only did brain scans and as soon as we decided on a new emergency room they ran a spinal scan did they admit me and, soon after, diagnose me with TM This thing going on right now is a whole different type of scary. Can't be compared. Of course being paralyzed and all of the things that led up to complete paralysis from the waste down is by far the scariest thing that ever happened. But this thing is pretty bad. Now I am just afraid to go to sleep because I don't want to wake up convulsing. It only happens when I wake from a sleep. On Tue, Jun 26, 2012 at 7:46 AM, Janice Nichols jan...@centurytel.net wrote: Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles.Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg
Re: [TMIC] Looking for input.
Janice - hi. I take 10 mg. of baclofen breakfast, late afternoon, bedtime, 2-4:00 am, when I get up to pee and take my thyroid pill. it works perfectly, for me. For 20 years I only took it at bedtime, and it wasn't nearly as effective. I was 36 when I became paralyzed from the midsection down the first time. Diagnosed with probable MS. 2 year recovery time...interestingly enough. Age 56 (I'm now 58) major TM symptoms, 3 day hospital stay, diagnosed officially TM. which, to me, was a good thing! great neurologist this time. Does anyone else have nausea? If it weren't for Zofran (which I need almost every day) my mornings would be taken up with throwing up... I'm wondering if it is one of my medications: Baclofen, Neurontin, Zoloft, Savella,Zofran,Restoril (for sleep)B12 injections twice a week. Can you believe it? jeepers creepers! love, Susan On Jun 26, 2012, at 6:42 PM, Janice Nichols wrote: Susan, what time every day do you take your baclofen? Also, how old were you when TM hit you? Janice From: Susan Kleinz Sent: Tuesday, June 26, 2012 10:42 AM To: Bridget Skinner Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic- l...@eskimo.com Subject: Re: [TMIC] Looking for input. Hello Bridget and all. Susan Kleinz here - Phoenix, Arizona Today it is going to be 113! The heat is hard, but the cold is worse for me. I have been on baclofen for 22 years. It has saved me from painful spasms. I take it every six hours. neurontin also helps me. I take it 3 times a day. Also Zoloft and Savella. I know you can get the spasms under control! you must! This is a strange disease, and I personally don't like talking about it to outsiders. I am grateful to have this website, otherwise, I might give up. I feel sorry for my husband, who didn't sign on for a sick wife. I have constant band pain and lower back pain. wa wa wa I try not to get down. Good luck! you must be your own advocate. love, Susan On Jun 25, 2012, at 5:16 PM, Bridget Skinner wrote: A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.net wrote: I would start with Baclofen first - I think it works great. You need to take all through the day, morning, noon and night. It really does help a lot. Janice From: Elizabeth Clark Sent: Monday, June 25
Re: [TMIC] Looking for input.
I don’t understand the nausea unless it would be the middle-of-the-night meds you take. Your stomach would probably be pretty empty at that time and could be affected by drugs. How did TM leave you – or, I should say, what problems do you have physically? I have a good friend that has MS and we find there are a lot of similarities we deal with. Janice From: Susan Kleinz Sent: Thursday, June 28, 2012 10:05 AM To: Janice Nichols Cc: Bridget Skinner ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Janice - hi. I take 10 mg. of baclofen breakfast, late afternoon, bedtime, 2-4:00 am, when I get up to pee and take my thyroid pill. it works perfectly, for me. For 20 years I only took it at bedtime, and it wasn't nearly as effective. I was 36 when I became paralyzed from the midsection down the first time. Diagnosed with probable MS. 2 year recovery time...interestingly enough. Age 56 (I'm now 58) major TM symptoms, 3 day hospital stay, diagnosed officially TM. which, to me, was a good thing! great neurologist this time. Does anyone else have nausea? If it weren't for Zofran (which I need almost every day) my mornings would be taken up with throwing up... I'm wondering if it is one of my medications: Baclofen, Neurontin, Zoloft, Savella,Zofran,Restoril (for sleep)B12 injections twice a week. Can you believe it? jeepers creepers! love, Susan On Jun 26, 2012, at 6:42 PM, Janice Nichols wrote: Susan, what time every day do you take your baclofen? Also, how old were you when TM hit you? Janice From: Susan Kleinz Sent: Tuesday, June 26, 2012 10:42 AM To: Bridget Skinner Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Hello Bridget and all. Susan Kleinz here - Phoenix, Arizona Today it is going to be 113! The heat is hard, but the cold is worse for me. I have been on baclofen for 22 years. It has saved me from painful spasms. I take it every six hours. neurontin also helps me. I take it 3 times a day. Also Zoloft and Savella. I know you can get the spasms under control! you must! This is a strange disease, and I personally don't like talking about it to outsiders. I am grateful to have this website, otherwise, I might give up. I feel sorry for my husband, who didn't sign on for a sick wife. I have constant band pain and lower back pain. wa wa wa I try not to get down. Good luck! you must be your own advocate. love, Susan On Jun 25, 2012, at 5:16 PM, Bridget Skinner wrote: A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want
Re: [TMIC] Looking for input.
I keep busy with lots of little things and some few big things. I am about finished editing my second book and making it ready for some other set of eyes to look it over for consideration as a published book. With one book already published in 2007 more publishers are willing to look at this one. I do a lot of polishing of hard wood things like duck calls for pleasure. Nothing pleases me more than having some smoothed piece of beautiful wood in my hand, like Birdseye maple, walnut burl, red oak. I wear a duck call around my neck at all times. If a seizure strikes I can blow it to get attention. You see, this is New York; you don't use a coach's whistle, or everyone will run away, thinking it is a policeman. The duck call makes people turn around to see what it is, with open and innocent curiosity. That is the attitude I want when they see me asking for help because I am having a seizure. And also because this is New York, if you have even a gran-mal, no one will notice. I only wish I could polish my soul as easily as I polish a wooden duck call to make it as beautiful as possible. But it is not so simple. Polishing the duck call wood does provide a lesson: by hard work its hidden beauty will come out, and by no other way except hard work is this possible. And, you cannot make it better than what beauty it inherently possesses. I beseech Thee, O my God, by Thy beauty, stinging forth above the horizon of eternity, a beauty which, as soon as it revealed itself, the kingdom of beauty boweth down in worship, magnifying it in ringing tones, to grant that I may die to all that I possess and live to whatsoever belongeth unto Thee. Thou seest me, O my God, holding to Thy Name the Most-Holy, the Most-Luminous, the Most_Mighty, the Most-Great, the Most-Exalted, the Most-Glorious, and clinging to the hem of the Robe to which have clung all in this world and in the world to come. Baha-u-llah When the pain and fatigue subsides enough I try to take care of all the domestic chores so my dear wife can concentrate on her business. How the time flies. DG. Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 9:48 PM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Actually, I am doing pretty well.Still getting stronger in my legs after 5 years of TM.Balance isn¹t terrific, but I can deal with it. What do you do to keep your brain going since you are practically a shut in now? You always kept busy with mental activities.You and Bridget are the only ones I have known that have the seizure problems.Surely the doc¹s can come up with something for you two to carry on decent lives.I pray for you both. Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Tuesday, June 26, 2012 3:13 PM To: Janice Nichols mailto:jan...@centurytel.net ; Janet Dunn mailto:j.d...@shaw.ca ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Actually; The situation was much improved for a while. But now they are back again, having Segwayed into a kind of mental fog, which comes on quickly then leaves me with limited speech and locomotion capacities, and in need of around 3-4 hours sleep almost immediately. I am really a shut-in now, since I can't depend on more than around 6 hours of lucidity before the next attack. How are you doing? Love to all, DG Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 10:23 AM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Dalton, how are you doing with your seizures? Haven¹t heard much about it lately. Hope it means there is vast improvement. Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Monday, June 25, 2012 9:59 PM To: Janet Dunn mailto:j.d...@shaw.ca ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold
Re: [TMIC] Looking for input.
Dalton, you have succeeded in making a good life for you and your wife - despite TM. I couldn’t imagine your sitting around doing nothing.Good for you! Janice From: Dalton Garis Sent: Wednesday, June 27, 2012 7:01 AM To: Janice Nichols ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I keep busy with lots of little things and some few big things. I am about finished editing my second book and making it ready for some other set of eyes to look it over for consideration as a published book. With one book already published in 2007 more publishers are willing to look at this one. I do a lot of polishing of hard wood things like duck calls for pleasure. Nothing pleases me more than having some smoothed piece of beautiful wood in my hand, like Birdseye maple, walnut burl, red oak. I wear a duck call around my neck at all times. If a seizure strikes I can blow it to get attention. You see, this is New York; you don't use a coach's whistle, or everyone will run away, thinking it is a policeman. The duck call makes people turn around to see what it is, with open and innocent curiosity. That is the attitude I want when they see me asking for help because I am having a seizure. And also because this is New York, if you have even a gran-mal, no one will notice. I only wish I could polish my soul as easily as I polish a wooden duck call to make it as beautiful as possible. But it is not so simple. Polishing the duck call wood does provide a lesson: by hard work its hidden beauty will come out, and by no other way except hard work is this possible. And, you cannot make it better than what beauty it inherently possesses. I beseech Thee, O my God, by Thy beauty, stinging forth above the horizon of eternity, a beauty which, as soon as it revealed itself, the kingdom of beauty boweth down in worship, magnifying it in ringing tones, to grant that I may die to all that I possess and live to whatsoever belongeth unto Thee. Thou seest me, O my God, holding to Thy Name the Most-Holy, the Most-Luminous, the Most_Mighty, the Most-Great, the Most-Exalted, the Most-Glorious, and clinging to the hem of the Robe to which have clung all in this world and in the world to come. — Baha-u-llah When the pain and fatigue subsides enough I try to take care of all the domestic chores so my dear wife can concentrate on her business. How the time flies. DG. Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 9:48 PM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Actually, I am doing pretty well.Still getting stronger in my legs after 5 years of TM.Balance isn’t terrific, but I can deal with it. What do you do to keep your brain going since you are practically a shut in now? You always kept busy with mental activities.You and Bridget are the only ones I have known that have the seizure problems.Surely the doc’s can come up with something for you two to carry on decent lives.I pray for you both. Janice From: Dalton Garis Sent: Tuesday, June 26, 2012 3:13 PM To: Janice Nichols ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Actually; The situation was much improved for a while. But now they are back again, having Segwayed into a kind of mental fog, which comes on quickly then leaves me with limited speech and locomotion capacities, and in need of around 3-4 hours sleep almost immediately. I am really a shut-in now, since I can't depend on more than around 6 hours of lucidity before the next attack. How are you doing? Love to all, DG Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 10:23 AM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Dalton, how are you doing with your seizures? Haven’t heard much about it lately. Hope it means there is vast improvement. Janice From: Dalton Garis Sent: Monday, June 25, 2012 9:59 PM To: Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release
RE: [TMIC] Looking for input.
Hi Dalton, I am fortunate to still be working to keep my mind busy and have some social life. We have 2 things in common; I'm in the baby beginnings of attempting a book and I also love working with wood. Before TM I made lots of furniture for the house. I then became interested in the lathe, which with a lot of patience will also bring out the beauty of the wood when polished. I go around feeling anything made of wood looking for that smooth touch. Recently, I purchased a pistol grip cane made from cocobolo, besides the beauty of the grain it is wonderful to feel the smoothness and dare I say the life of the cocobolo. I live out in Suffolk county Long Island, I would love to come and visit one day. I believe you live in Queens. That might be doable, the City, not so much. I work Monday to Friday, maybe a week end if you would be up to visitors. Make it a great day, Deb From: Dalton Garis [mailto:malugss...@gmail.com] Sent: Wednesday, June 27, 2012 8:02 AM To: Janice Nichols; Janet Dunn; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. I keep busy with lots of little things and some few big things. I am about finished editing my second book and making it ready for some other set of eyes to look it over for consideration as a published book. With one book already published in 2007 more publishers are willing to look at this one. I do a lot of polishing of hard wood things like duck calls for pleasure. Nothing pleases me more than having some smoothed piece of beautiful wood in my hand, like Birdseye maple, walnut burl, red oak. I wear a duck call around my neck at all times. If a seizure strikes I can blow it to get attention. You see, this is New York; you don't use a coach's whistle, or everyone will run away, thinking it is a policeman. The duck call makes people turn around to see what it is, with open and innocent curiosity. That is the attitude I want when they see me asking for help because I am having a seizure. And also because this is New York, if you have even a gran-mal, no one will notice. I only wish I could polish my soul as easily as I polish a wooden duck call to make it as beautiful as possible. But it is not so simple. Polishing the duck call wood does provide a lesson: by hard work its hidden beauty will come out, and by no other way except hard work is this possible. And, you cannot make it better than what beauty it inherently possesses. I beseech Thee, O my God, by Thy beauty, stinging forth above the horizon of eternity, a beauty which, as soon as it revealed itself, the kingdom of beauty boweth down in worship, magnifying it in ringing tones, to grant that I may die to all that I possess and live to whatsoever belongeth unto Thee. Thou seest me, O my God, holding to Thy Name the Most-Holy, the Most-Luminous, the Most_Mighty, the Most-Great, the Most-Exalted, the Most-Glorious, and clinging to the hem of the Robe to which have clung all in this world and in the world to come. - Baha-u-llah When the pain and fatigue subsides enough I try to take care of all the domestic chores so my dear wife can concentrate on her business. How the time flies. DG. Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 9:48 PM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Actually, I am doing pretty well.Still getting stronger in my legs after 5 years of TM.Balance isn't terrific, but I can deal with it. What do you do to keep your brain going since you are practically a shut in now? You always kept busy with mental activities.You and Bridget are the only ones I have known that have the seizure problems.Surely the doc's can come up with something for you two to carry on decent lives.I pray for you both. Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Tuesday, June 26, 2012 3:13 PM To: Janice Nichols mailto:jan...@centurytel.net ; Janet Dunn mailto:j.d...@shaw.ca ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Actually; The situation was much improved for a while. But now they are back again, having Segwayed into a kind of mental fog, which comes on quickly then leaves me with limited speech and locomotion capacities, and in need of around 3-4 hours sleep almost immediately. I am really a shut-in now, since I can't depend on more than around 6 hours of lucidity before the next attack. How are you doing? Love to all, DG Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 10:23 AM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Dalton, how are you doing with your seizures? Haven't heard much about it lately. Hope
Re: [TMIC] Looking for input.
Bridget, Are you sure you can’t get into the doc until August?Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica.I am back on Neurontin after trying Lyrica.Lyrica caused a lot of swelling in feet and ankles.Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem.The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon.You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures.I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! -- From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 8:16 PM Subject: Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my
Re: [TMIC] Looking for input.
if you have a family Doc,they could refer you for another opinion. there seams to be more going on here than meets the eye. hard to find a happy middle ground in neurological medicine,while one Doc will pit you to sleep another will let you scream with pain and anguish. never be satisfied,always pay attention to your body and if one mechanic you hired dont satisfy you with the repair procedure go to another garage. although we cant rid ourselves of all discomfort,,some things indicate further immediate attention! don't waitget on the phone! Your the boss! From: Janice Nichols jan...@centurytel.net To: Bridget Skinner ibridg...@gmail.com; john snodgrass jcs...@yahoo.com Cc: Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Tuesday, June 26, 2012 8:46 AM Subject: Re: [TMIC] Looking for input. Bridget, Are you sure you can’t get into the doc until August? Have you told them your symptoms and they still refuse until August? How about seeing your yearly doc you saw before TM? He/she could probably get you in way before August. I have taken both Neurontin and Lyrica. I am back on Neurontin after trying Lyrica. Lyrica caused a lot of swelling in feet and ankles. Some prefer it and have no problems. As far as the urinating problem - I think most of us have that problem. The important thing is that you are able to completely void your bladder. Do you have problems wetting during the night or are you able to feel enough to wake up to go to the bathroom? Again, the important part is voiding the bladder. I think it is important to get into the doc soon. You can call his office, ask to speak to his/her nurse and explain what is happening to you. Be adamant that you need to be seen quickly after having convulsions/seizures. I would think that would get their attention, if not, find a doc who will see you. Your first neurologist will send the info on you to the new one. Good luck and please keep in touch with us with your progress with these issues. Janice From: Bridget Skinner Sent: Monday, June 25, 2012 9:32 PM To: john snodgrass Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 8:16 PM Subject: Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after
Re: [TMIC] Looking for input.
thats right Dalton. it would be terrible if we had nobody like us to talk to because everyone else seams to just not understand From: Dalton Garis malugss...@gmail.com To: Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Monday, June 25, 2012 10:59 PM Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
Tell me again where you live - I think I want to move there. Since TM, I LOVE cold weather! Janice From: Janet Dunn Sent: Monday, June 25, 2012 9:43 PM To: tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
Dalton, how are you doing with your seizures? Haven’t heard much about it lately. Hope it means there is vast improvement. Janice From: Dalton Garis Sent: Monday, June 25, 2012 9:59 PM To: Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
Hello Bridget and all. Susan Kleinz here - Phoenix, Arizona Today it is going to be 113! The heat is hard, but the cold is worse for me. I have been on baclofen for 22 years. It has saved me from painful spasms. I take it every six hours. neurontin also helps me. I take it 3 times a day. Also Zoloft and Savella. I know you can get the spasms under control! you must! This is a strange disease, and I personally don't like talking about it to outsiders. I am grateful to have this website, otherwise, I might give up. I feel sorry for my husband, who didn't sign on for a sick wife. I have constant band pain and lower back pain. wa wa wa I try not to get down. Good luck! you must be your own advocate. love, Susan On Jun 25, 2012, at 5:16 PM, Bridget Skinner wrote: A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.net wrote: I would start with Baclofen first - I think it works great. You need to take all through the day, morning, noon and night. It really does help a lot. Janice From: Elizabeth Clark Sent: Monday, June 25, 2012 2:36 PM To: 'Janet Dunn' ; tmic-list@eskimo.com Subject: RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help… “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated.” --- “My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal nerve pain in my spine (rare), only tramadol helps.” From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have
Re: [TMIC] Looking for input.
Actually; The situation was much improved for a while. But now they are back again, having Segwayed into a kind of mental fog, which comes on quickly then leaves me with limited speech and locomotion capacities, and in need of around 3-4 hours sleep almost immediately. I am really a shut-in now, since I can't depend on more than around 6 hours of lucidity before the next attack. How are you doing? Love to all, DG Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 10:23 AM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Dalton, how are you doing with your seizures? Haven¹t heard much about it lately. Hope it means there is vast improvement. Janice From: Dalton Garis mailto:malugss...@gmail.com Sent: Monday, June 25, 2012 9:59 PM To: Janet Dunn mailto:j.d...@shaw.ca ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
Hi all--I'm one who has tried all of the drugs and learned about Lyrica from Dalton. Now I can't live without it. My legs spasm so bad that without it that my wife would leave me if I didn't take it. Seriously, there was no sleep for either of us before the Pregabalin (generic Lyrica). I understand the heat Dalton talks about as I stretch the doses as far as I can it get worse. I take a huge dose about 11 pm, 300 mg. and by 8:00 am I am kicking the blankets off the bed. It or the TM puts me out by 2pm and I sleep until 6pm. Lately I have been rubbing my heels together at night without knowing it. I do have full body rigidity attacks, usually in the morning--my body tightens all around me and I lift up off the bed, only head and feet touching for 10 seconds or so. No, I can't feel much in my legs except the buzzing heat. Anyway Janet, the spasms due stop with the Lyrica but maybe other things work for you too. One thing I think all of us can agree on it that we all seem to be different in so many ways with how the disease effects us but similar in some others. It is a tough road to hoe. Jim On Tue, Jun 26, 2012 at 10:13 AM, Dalton Garis malugss...@gmail.com wrote: Actually; The situation was much improved for a while. But now they are back again, having Segwayed into a kind of mental fog, which comes on quickly then leaves me with limited speech and locomotion capacities, and in need of around 3-4 hours sleep almost immediately. I am really a shut-in now, since I can't depend on more than around 6 hours of lucidity before the next attack. How are you doing? Love to all, DG Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 10:23 AM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Dalton, how are you doing with your seizures? Haven’t heard much about it lately. Hope it means there is vast improvement. Janice *From:* Dalton Garis malugss...@gmail.com *Sent:* Monday, June 25, 2012 9:59 PM *To:* Janet Dunn j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
Well now That rigidity you talk about sounds a lot like part of what I have been describing for years. Dalton Garis New York, New York On Jun 26, 2012, at 5:10 PM, James Berg molokai...@gmail.com wrote: Hi all--I'm one who has tried all of the drugs and learned about Lyrica from Dalton. Now I can't live without it. My legs spasm so bad that without it that my wife would leave me if I didn't take it. Seriously, there was no sleep for either of us before the Pregabalin (generic Lyrica). I understand the heat Dalton talks about as I stretch the doses as far as I can it get worse. I take a huge dose about 11 pm, 300 mg. and by 8:00 am I am kicking the blankets off the bed. It or the TM puts me out by 2pm and I sleep until 6pm. Lately I have been rubbing my heels together at night without knowing it. I do have full body rigidity attacks, usually in the morning--my body tightens all around me and I lift up off the bed, only head and feet touching for 10 seconds or so. No, I can't feel much in my legs except the buzzing heat. Anyway Janet, the spasms due stop with the Lyrica but maybe other things work for you too. One thing I think all of us can agree on it that we all seem to be different in so many ways with how the disease effects us but similar in some others. It is a tough road to hoe. Jim On Tue, Jun 26, 2012 at 10:13 AM, Dalton Garis malugss...@gmail.com wrote: Actually; The situation was much improved for a while. But now they are back again, having Segwayed into a kind of mental fog, which comes on quickly then leaves me with limited speech and locomotion capacities, and in need of around 3-4 hours sleep almost immediately. I am really a shut-in now, since I can't depend on more than around 6 hours of lucidity before the next attack. How are you doing? Love to all, DG Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 10:23 AM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Dalton, how are you doing with your seizures? Haven’t heard much about it lately. Hope it means there is vast improvement. Janice From: Dalton Garis Sent: Monday, June 25, 2012 9:59 PM To: Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
Susan, what time every day do you take your baclofen? Also, how old were you when TM hit you? Janice From: Susan Kleinz Sent: Tuesday, June 26, 2012 10:42 AM To: Bridget Skinner Cc: Janice Nichols ; Elizabeth Clark ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Hello Bridget and all. Susan Kleinz here - Phoenix, Arizona Today it is going to be 113! The heat is hard, but the cold is worse for me. I have been on baclofen for 22 years. It has saved me from painful spasms. I take it every six hours. neurontin also helps me. I take it 3 times a day. Also Zoloft and Savella. I know you can get the spasms under control! you must! This is a strange disease, and I personally don't like talking about it to outsiders. I am grateful to have this website, otherwise, I might give up. I feel sorry for my husband, who didn't sign on for a sick wife. I have constant band pain and lower back pain. wa wa wa I try not to get down. Good luck! you must be your own advocate. love, Susan On Jun 25, 2012, at 5:16 PM, Bridget Skinner wrote: A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.net wrote: I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice From: Elizabeth Clark Sent: Monday, June 25, 2012 2:36 PM To: 'Janet Dunn' ; tmic-list@eskimo.com Subject: RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help… “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated.” --- “My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal
Re: [TMIC] Looking for input.
Actually, I am doing pretty well.Still getting stronger in my legs after 5 years of TM.Balance isn’t terrific, but I can deal with it. What do you do to keep your brain going since you are practically a shut in now? You always kept busy with mental activities.You and Bridget are the only ones I have known that have the seizure problems.Surely the doc’s can come up with something for you two to carry on decent lives.I pray for you both. Janice From: Dalton Garis Sent: Tuesday, June 26, 2012 3:13 PM To: Janice Nichols ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Actually; The situation was much improved for a while. But now they are back again, having Segwayed into a kind of mental fog, which comes on quickly then leaves me with limited speech and locomotion capacities, and in need of around 3-4 hours sleep almost immediately. I am really a shut-in now, since I can't depend on more than around 6 hours of lucidity before the next attack. How are you doing? Love to all, DG Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 10:23 AM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Dalton, how are you doing with your seizures? Haven’t heard much about it lately. Hope it means there is vast improvement. Janice From: Dalton Garis Sent: Monday, June 25, 2012 9:59 PM To: Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
I had one full seizure and many, many mini-seizures (didn't pass out, just lots of muscle spasms and trouble talking)for 2 years before I was diagnosed with TM. I can still have them only very occasionally when I get really tired. Medication does help and they usually don't happen until late evening when I try to relax. This TM business can be really complex sometimes. Roger in Kennewick, WA From: Janice Nichols jan...@centurytel.net To: Dalton Garis malugss...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Tuesday, June 26, 2012 6:48 PM Subject: Re: [TMIC] Looking for input. Actually, I am doing pretty well. Still getting stronger in my legs after 5 years of TM. Balance isn’t terrific, but I can deal with it. What do you do to keep your brain going since you are practically a shut in now? You always kept busy with mental activities. You and Bridget are the only ones I have known that have the seizure problems. Surely the doc’s can come up with something for you two to carry on decent lives. I pray for you both. Janice From: Dalton Garis Sent: Tuesday, June 26, 2012 3:13 PM To: Janice Nichols ; Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Actually; The situation was much improved for a while. But now they are back again, having Segwayed into a kind of mental fog, which comes on quickly then leaves me with limited speech and locomotion capacities, and in need of around 3-4 hours sleep almost immediately. I am really a shut-in now, since I can't depend on more than around 6 hours of lucidity before the next attack. How are you doing? Love to all, DG Dalton H. Garis Flushing, Queens New York, USA From: Janice Nichols jan...@centurytel.net Date: Tuesday, 26 January 2012 10:23 AM To: Dalton Garis malugss...@gmail.com, Janet Dunn j.d...@shaw.ca, tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Dalton, how are you doing with your seizures? Haven’t heard much about it lately. Hope it means there is vast improvement. Janice From: Dalton Garis Sent: Monday, June 25, 2012 9:59 PM To: Janet Dunn ; tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
Re: [TMIC] Looking for input.
it is frustrating to say the least,,,your thinking,,im going to do this,,and then you move and your body begins to dictate otherwise to the point you say in going to do nothing.that heade thrashing scares me though...might jerk it into something!,,,ive done my legs that way and it left a mark From: Bridget Skinner ibridg...@gmail.com To: john snodgrass jcs...@yahoo.com Cc: Janice Nichols jan...@centurytel.net; Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com tmic-list@eskimo.com Sent: Monday, June 25, 2012 10:32 PM Subject: Re: [TMIC] Looking for input. Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! From: Bridget Skinner ibridg...@gmail.com To: Janice Nichols jan...@centurytel.net Cc: Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 8:16 PM Subject: Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.net wrote: I would start with Baclofen first - I think it works great. You need to take all through the day, morning, noon and night. It really does help a lot. Janice From
Re: [TMIC] Looking for input.
Janet I think I am one of the odd ones out there who has more problems with the heat than I do with the cold weather. I always seem to have more issues with spasms and pain during the summer months, especially if we are having hot days with high humidity. Lynne --- On Mon, 6/25/12, Janet Dunn j.d...@shaw.ca wrote: From: Janet Dunn j.d...@shaw.ca Subject: [TMIC] Looking for input. To: tmic-list@eskimo.com Date: Monday, June 25, 2012, 1:29 AM Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Janet My problem with the heat is fatigue. The hotter it gets the more my fatigue increases. I also have increased muscle weakness more numbness. It seems worse every summer. It is difficult to do much I basically spend the summer in the house. My husband has relatives in North Dakota (we live in Texas) we are considering spending next summer there because of the heat here. I have never taken Lyrica, but I have never had much of a problems with spasms. I haven't found anything that helps except cooler temperatures. I don't have near the problems with the cold. PS There is still people here, I just don't write much. Linda E. From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Monday, June 25, 2012 9:48 AM Subject: Re: [TMIC] Looking for input. Janet I think I am one of the odd ones out there who has more problems with the heat than I do with the cold weather. I always seem to have more issues with spasms and pain during the summer months, especially if we are having hot days with high humidity. Lynne --- On Mon, 6/25/12, Janet Dunn j.d...@shaw.ca wrote: From: Janet Dunn j.d...@shaw.ca Subject: [TMIC] Looking for input. To: tmic-list@eskimo.com Date: Monday, June 25, 2012, 1:29 AM Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
I haven't really noticed if spasms are worse, but my main problem with the heart is that it just drains me of energy. I'm much more easily fatigued in the heat, but I am stiffer in the cold and am almost home-bound when it is icy due to balance and footing problems. Barbara H. http://barbarah.wordpress.com On Mon, Jun 25, 2012 at 1:29 AM, Janet Dunn j.d...@shaw.ca wrote: Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Bernie i have noticed that when i make it snow in here i sleep better,,,lol From: Bernie Pelow bpe...@austin.rr.com To: Janet Dunn j.d...@shaw.ca; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:46 AM Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
Well, the both of us here in Elvisland suffer the heat . greatly. Welost a tall tree to a nasty storm last year and as a result, our back yard is about ten degrees hotter'n before. It's great for some of the veggies we have growing out there but the dawgs and us ... prefer to stay inside. Arghh... BobbyJim - Original Message - From: Barbara H. To: Janet Dunn Cc: tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:11 AM Subject: Re: [TMIC] Looking for input. I haven't really noticed if spasms are worse, but my main problem with the heart is that it just drains me of energy. I'm much more easily fatigued in the heat, but I am stiffer in the cold and am almost home-bound when it is icy due to balance and footing problems. Barbara H. http://barbarah.wordpress.com On Mon, Jun 25, 2012 at 1:29 AM, Janet Dunn j.d...@shaw.ca wrote: Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Janet, I have not noticed increased pain anywhere with the heat. I do, however, have problems with heat affecting my ability to handle my body’s heat from the shoulders up.I have excessive sweating from head and face.I wear a patch – it is Clonidine and it helps with our hot weather. I still don’t spend any time outside when it is s hot anymore. Are you taking something else instead of Lyrica? Janice, always still here with this group. From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Janet, one more thought. Do you take Baclofen for spasms?Really works great for me as long as I take it 3 times a day. Janice From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Bernie..You may find this strange but I’m just the opposite. When I get to cold my pain level goes up. In the summer I will go out on the back porch for the warmth and sunshine. We keep our home at about 76 or 77. In the winter even with the central heating I have a small portable heater in the bathroom because I get to cold in the shower. This TM thing is a strange affliction. Please call me this winter when you order up the snow. Maybe I can have time to go further south somewhere. LOL!.Cody in Austin From: Bernie Pelow Sent: Monday, June 25, 2012 10:46 AM To: Janet Dunn ; TMIC Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
I have found that heat and cold have no effect on my condition. The only thing that makes me struggle is high humidity and or rain. I have found both Lyrica and Cymbalta to be helpful. Rob in New Jersey -Original Message- From: Janice Nichols jan...@centurytel.net To: Janet Dunn j.d...@shaw.ca; tmic-list tmic-list@eskimo.com Sent: Mon, Jun 25, 2012 2:23 pm Subject: Re: [TMIC] Looking for input. Janet, I have not noticed increased pain anywhere with the heat. I do, however, have problems with heat affecting my ability to handle my body’s heat from the shoulders up.I have excessive sweating from head and face.I wear a patch – it is Clonidine and it helps with our hot weather. I still don’t spend any time outside when it is s hot anymore. Are you taking something else instead of Lyrica? Janice, always still here with this group. From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
RE: [TMIC] Looking for input.
Coincidentally, someone from a different TM support group recently expressed similar difficulty and here's a response that may be of help. Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated. --- My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal nerve pain in my spine (rare), only tramadol helps. From: Janet Dunn mailto:j.d...@shaw.ca Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
wont leave home without it...lol From: Janice Nichols jan...@centurytel.net To: Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com Sent: Monday, June 25, 2012 2:25 PM Subject: Re: [TMIC] Looking for input. Janet, one more thought. Do you take Baclofen for spasms? Really works great for me as long as I take it 3 times a day. Janice From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Folks, If I forget to take Lyrica, then within hours I light up from within like a Roman candle. Suddenly, it is as if I am being dragged through a prickly pear patch. I'm not kidding: I would need hospitalization and enough other meds that I would be a zombe. DG Dalton H. Garis Flushing, Queens New York, USA From: Todd Tarno toddtm2...@sbcglobal.net Date: Monday, 25 January 2012 3:49 PM To: TMIC tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 12:53:55 -0700 I have only got good things to say, about getting off Lyrica.Was on Neuronten for 5 yrs Lyrica for 5 yrs. 1. Had a bad reaction with one of my other medication. 2. I lost 10 lbs in the first 2 months. 3. Got more good feeling in both of my legs. With the heat no AC right now, I'm having trouble with the stiffness of both legs. Hope to get a new unit this week. Todd in Warm Corpus Christi, TX Bernie: ( where for the next 3 months it will average about 95 to 105 degrees at the peak heat in the afternoon ) --- On Mon, 6/25/12, john snodgrass jcs...@yahoo.com wrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] Looking for input. To: Bernie Pelow bpe...@austin.rr.com, Janet Dunn j.d...@shaw.ca, TMIC tmic-list@eskimo.com Date: Monday, June 25, 2012, 11:55 AM Bernie i have noticed that when i make it snow in here i sleep better,,,lol From: Bernie Pelow bpe...@austin.rr.com To: Janet Dunn j.d...@shaw.ca; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:46 AM Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
ME TOO! Although the Lyrica makes my thinking fuzzy, I really hate the Roman candle or as I put it, The demon with the taser gun. I have tried so many medications, and all of them either don't work or have really negative side effects. Hot and cold effect me too, either lots of fatigue or pain. Roger in Kennewick, WA From: Dalton Garis malugss...@gmail.com To: Todd Tarno toddtm2...@sbcglobal.net; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 4:19 PM Subject: Re: [TMIC] Looking for input. Folks, If I forget to take Lyrica, then within hours I light up from within like a Roman candle. Suddenly, it is as if I am being dragged through a prickly pear patch. I'm not kidding: I would need hospitalization and enough other meds that I would be a zombe. DG Dalton H. Garis Flushing, Queens New York, USA From: Todd Tarno toddtm2...@sbcglobal.net Date: Monday, 25 January 2012 3:49 PM To: TMIC tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 12:53:55 -0700 I have only got good things to say, about getting off Lyrica. Was on Neuronten for 5 yrs Lyrica for 5 yrs. 1. Had a bad reaction with one of my other medication. 2. I lost 10 lbs in the first 2 months. 3. Got more good feeling in both of my legs. With the heat no AC right now, I'm having trouble with the stiffness of both legs. Hope to get a new unit this week. Todd in Warm Corpus Christi, TX Bernie: ( where for the next 3 months it will average about 95 to 105 degrees at the peak heat in the afternoon ) --- On Mon, 6/25/12, john snodgrass jcs...@yahoo.comwrote: From: john snodgrass jcs...@yahoo.com Subject: Re: [TMIC] Looking for input. To: Bernie Pelow bpe...@austin.rr.com, Janet Dunn j.d...@shaw.ca, TMIC tmic-list@eskimo.com Date: Monday, June 25, 2012, 11:55 AM Bernie i have noticed that when i make it snow in here i sleep better,,,lol From: Bernie Pelow bpe...@austin.rr.com To: Janet Dunn j.d...@shaw.ca; TMIC tmic-list@eskimo.com Sent: Monday, June 25, 2012 11:46 AM Subject: Re: [TMIC] Looking for input. Hi Janet, You're not the only one who finds heat a problem. I live in Texas and literally have to stay indoors all summer, only venturing out in the late evening if it is cool enough. Mine is because my body cannot regulate temperature, and I cannot sweat at all because of the damage to the spinal cord. Even when I go out at night after it has dropped down to 70, I sometimes still have problems. And it does wreak havoc with my spasticity, especially at night. The one relief I've found is to keep my apartment at about 66 degrees during the night, it helps keep the number of spasms down for some reason. Hope things get better for you... Peace, Bernie in HOT Texas (where for the next 3 months it will average about 105 to 110 degrees at peak heat in the afternoon)
Re: [TMIC] Looking for input.
I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice From: Elizabeth Clark Sent: Monday, June 25, 2012 2:36 PM To: 'Janet Dunn' ; tmic-list@eskimo.com Subject: RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help… “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated.” --- “My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal nerve pain in my spine (rare), only tramadol helps.” From: Janet Dunn Sent: Monday, June 25, 2012 12:29 AM To: tmic-list@eskimo.com Subject: [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.netwrote: I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice *From:* Elizabeth Clark xbeecla...@gmail.com *Sent:* Monday, June 25, 2012 2:36 PM *To:* 'Janet Dunn' j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help…*** * “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold and get stabbing pain in my legs particularly at night. What do some of you do for the pain? I am looking to avoid narcotics and habit forming medications. Any advice you have would be greatly appreciated.” --- “My relief came from flexeral (sp) which helped the spasms and cymbalta, which helped with the neuropathic pain. When I get localized brutal nerve pain in my spine (rare), only tramadol helps.” *From:* Janet Dunn j.d...@shaw.ca *Sent:* Monday, June 25, 2012 12:29 AM *To:* tmic-list@eskimo.com *Subject:* [TMIC] Looking for input. Hello Everyone - not sure who is on here anymore. I have written in before, several times in fact, bemoaning the issues that I have with the cold cold winters that we get up here in northeastern BC. Now, it is the heat. My question is this: does excessive heat cause issues like the cold does? I have never noticed it before, but this year I quit taking Lyrica, and I cannot get the spasming in my leg to stop, no matter what I try. I am wondering if stopping the lyrica has contributed to the increase in pain, or if it is heat related? Thanks for your input. Janet
Re: [TMIC] Looking for input.
Thank you so much for replyingit's so nice to hear other experiences. I am so sorry what you are going through and I totally understand the million other symtoms that come along as soon as you lose one. I too am on 80 mg of baclofen (seems like the magic number) and have been for awhile. It is possible, I guess, that after awhile your body starts to tolerate the meds. They started me on baclofen when I was still in the hospital. I was just starting to feel parts of my legs and it was excruciating pain. (at least I could feel, I thought). and they gradually increased the baclofen to 80. like i said I am so scared and can't get in until August 1st to see my neurologist. I try to take as many precautions as possible not to hurt myself but when I am thrashing or convulsing or whatever it is the left side of my head, in the front, hurts so bad. On Mon, Jun 25, 2012 at 8:33 PM, john snodgrass jcs...@yahoo.com wrote: the baclofin took care of my thrashing around. my wife said i was terrible to sleep with,,said i almost kicked her out of bed. @ 80 mg a day took that away.then a host of other meds for a host of other symptomsuggg! -- *From:* Bridget Skinner ibridg...@gmail.com *To:* Janice Nichols jan...@centurytel.net *Cc:* Elizabeth Clark xbeecla...@gmail.com; Janet Dunn j.d...@shaw.ca; tmic-list@eskimo.com *Sent:* Monday, June 25, 2012 8:16 PM *Subject:* Re: [TMIC] Looking for input. A question is coming I promise: I can relate to all of these different sensations. I live in texas and am terrified about the cold weather which won't be coming for quite sometime, but it scares me. Maybe that's because it was so cold when in was diagnosed and my hands would feel completely curled up in a ball and while I could pick things up I was unable to set them down. I take Baclofen for the spastiscity and muscle spasms and I am so thankful that it takes care of that type of pain. After being paralyzed and having to learn to walk again the feeling that was coming back was pain I had never felt before and was so hard to describe. As far as nerve pain goes I take Neurontin. Has anyone been on Neurontin and Lyrica at different times and can try to give a description as to how one works better than the other. My problem is that the Neurontin takes care of most of nerve pain but my hands continue to twitch and when I wake up in the morning my feet and ankles have such a horrible sensation that I feel like I need to go to the hospital - it's that bad (i would not go to the hospital again unless I ABSOLUTELY had to after the time I spent there - a month was long enough for me) Has this happened to anyone. Another question: Has anyone had any convulsions or seizures when they wake up? Not sure what to call them but whenever I wake up, no matter what time, My head thrashes forward than back a few times and it almost seems I have no control over my body. I have to hold onto the ceramic part of the sink so I won't hit it. I have already hit the bridge of my nose and chipped a tooth in doing so. I don't know what to call this but I have made an appt with my neurologist but can't get in until August 1 and am really scared. Also, I have a problem urinating. I have to push really hard no matter how bad I have to go. In conclusion, I would really like to know what works best for nerve pain, whether Neurontin or or Lyrica. Neurontin works other than the bottom bart of my legs. I should be grateful that it works that well, it is much better than what I went through before the scripts were ordered. But am curious about Lyrica. My neurologist mentioned it as an alternative but as I said the neurontin was working so well(other than the lower half that I didn't want to change anything.) Thank you for listening - I know we all have different experiences with our own Transverse Myelitis and I appreciate your time. Wish I could find a support group nearby. While I can't donate just yet I will be able to do so in September and it will be very worth it. On Mon, Jun 25, 2012 at 6:50 PM, Janice Nichols jan...@centurytel.netwrote: I would start with Baclofen first - I think it works great.You need to take all through the day, morning, noon and night.It really does help a lot. Janice *From:* Elizabeth Clark xbeecla...@gmail.com *Sent:* Monday, June 25, 2012 2:36 PM *To:* 'Janet Dunn' j.d...@shaw.ca ; tmic-list@eskimo.com *Subject:* RE: [TMIC] Looking for input. Coincidentally, someone from a different TM support group recently expressed similar difficulty and here’s a response that may be of help…*** * “Hi all, I am new to this group and was hoping you folks could give me some advice. I am recovering from transverse myelitis. I was unable to walk for six months and had complete paralysis from the waist down for three months. I am now able to walk again, but have severe hypersensitivity to hot and cold
Re: [TMIC] Looking for input.
We love you, and your struggle; It is all of our struggles, also. Our solidarity has done sooo much to keep me going, to get up and try to make something useful of the lucid and non-distracted time I can get. DG Dalton H. Garis Flushing, Queens New York, USA From: Janet Dunn j.d...@shaw.ca Date: Monday, 25 January 2012 10:43 PM To: tmic-list@eskimo.com tmic-list@eskimo.com Subject: Re: [TMIC] Looking for input. Resent-From: tmic-list@eskimo.com Resent-Date: Mon, 25 Jun 2012 19:48:11 -0700 Thank you for all of the replies. I am going to try the baclofen as needed. Yes, I am taking other meds - effexor, welbutrin, oxycontin fast acting, and oxycontin time release, and either tylenol or advil. I also have flexeril if I need it. I have come to the conclusion that it is a combination of the lack of Lyrica and the heat. Hot for us where I live is 24 degrees celcius - which is about 75 degrees. Cold is -35 or 40. I don't want to go back on the Lyrica, so I am going to try the baclofen. I have never had spasms like this before. Wow - how some of you live with bigger and badder (I know, I know) spasms is beyond me. I cannot tolerate the pain and uncomfortableness of the darn things. Always something new to enjoy ahem, ahem. It will be eight years in August for me, and this disease never ceases to frustrate me. Thanks again, so glad we are such a friendly helpful group. I will not whine about the heat again after hearing how hot it is in Texas, and other places. Where I live we may get one or two days of 30 Celcius which is about 82ish. And then we get an awesome thunder show. Take care my friends, Love Janet
