[TMIC] Cymbalta Lyrica
I mentioned last week that I went to a new Neuro in New Jersey and he recommended that I stop Cymbalta (cold turkey) wait a couple of weeks and start on Neurontin. His reason was that I am already on Lyrica and Cymbalta does the same thing so I was just supposedly doubling up. Anyway it has been a week since I stopped the Cymbalta and I have started getting terrible banding in both legs and especially around my trunk area. Doing my own test I took a Cynbalta and within a few minutes I started feeling better again. It now appears obvious to me that somehow or other the combination of Lyrica and Cymbalta was working for me and I plan on going back on it. I would appreciate feedback by members who take both of these drugs and how they have helped them. In addition on top of these 2 drugs should I consider the Neurontin to further reduce the banding? Rob in New jersey
[TMIC] a lot of discussions going on
Great discussions going on: LYRICA I took 1800mg Neuronton, then 2400mg, then switched to Lyrica because the neurontin took too long to work and stopped before my next dose. The Lyrica works faster and steadier at 100mg / every 8 hrs. My Neuro suggested this switch when I complained of the few hours of relief I was receiving from the Neurontin. CYMBALTA I also take 60mg Cymbalta daily. I need it for it's antidepressant qualities and get the added benefit of additional neuro pain relief. It has given me problems with brain zaps that dissappeared after I tried to stop taking it and then went to back on the regular dose. My Neuro switched me from Effexor to Cymbalta at my request. BACLOFEN 10mg every 8 hours for muscle spasms and banding. This med is what allows me to move. My muscles are too constricted without it, but if I take too much I look like a slobbering drunk. I cn take it at 6 hrs if I;e over exerted and my muscles are tightening too much. MEDICAL MARIJUANA - MERINOL I voted for it in Michigan and the vote passed. I don't expect to ever use it for personal reasons, but I think it should be available for those who need it. Our pharmacist said Medical Marijuana wasn't needed, because Merinol works exactly the same. Well, we all know from our own experiences that nothing works the same for everyone so if you need it, so be it. NEURO VS. PRIMARY DOCTOR I found a doctor who heard of TM so I didn't make a Neruo appointment at my six year anniversary in November. However, I also haven't needed any drug changes. It will all depend on how the PCP works with me if I request a chane in meds. TMIC List Both my Neuro and PCP encourage me to learn all I can from this terrific group and pass that info on to them. They don't claim to be know-it-all's when it comes to how bad the pain can get. Patti - Michigan
[TMIC] Lyrica, Cymbalta AND Baclofen
Rob I think I was typing my last post wile you were sending yours. I take Lyrica and Cymbalta and must also take Baclofen for the banding and muscle spasms. Lyrica and Cymbalta decrease the neuro pain, but he Baclofen is the first thing I reach for when I've over exerted and my mucles are tightening so bad I can't move. Those were my first TM symptoms and the one that sent me to ER. Patti - Michigan
Re: [TMIC]I tried Marinol too
Sativex is only available in Canada, Japan and Spain NOW, but it won't be long till it's available here in the US. The drug company is doing the testing to gain certification here. Sativex is available in Boxes of four small spray bottles. Each bottle has 51 sprays, each equal to one cannabis joint, cost is $640 for 204 doses. It has been a long time time since I purchased any Cannabis so I have no idea if this is a Good Deal. But I know Sativex works every time, is not contaminated, is legal traveling the world crossing borders. Sativex is a prescription drug. I see Sativex taking a lot of demand away from organic cannabis. I read an interesting article in the New York times that ssaid that Medical Cannabis use is impacting and lowering the price of cannabis on the street in California- and As goes California so goes the nation. F
Re: [TMIC] Where TM struck
Living in Calgary. Age 58 when got TM. Grew up from age 7 to 21 in Hamilton Ont. Steel town. Lived within 3 blocks of factories from 1952 until 1966. Lots of smog and pollution. Father who worked at steel plant had Rheumatoid Arthritis. I got TM at age 58. My middle sister (3 yrs younger ) diagnosed with TM at age 43 in 1991. My youngest sister (7 yrs younger) diagnosed with Ulcerative Colitis at age 19 in 1972. All the above are autoimmune conditions. I have often wondered if it has anything to do with where we grew up. Heather in Calgary - Original Message - From: Janice Nichols To: tmic-list@eskimo.com Sent: Monday, May 17, 2010 10:04 PM Subject: [TMIC] Where TM struck I did not get many replies to my asking where people were living when TM struck them. Actually, it was really scattered. Sorry. Janice
Re: [TMIC]I tried Marinol too
My doctor tried me on Cesamet. However, he told me it would make me tired and also I could feel like I was 'drunk'. Well, I only took one pill. At night. I went to bed, woke up to go to the bathroom, was sooo tired that I could barely make it out of bed, literally 'staggered' down the hallway bouncing off the walls, felt like I was very very drunk, the room spinning, staggered back to bed and finaly got out of bed at 5 pm the following day only to be tired and back to bed early. I decided that it didn't work for me. The doctor then had me dilute the med in juice and titrate up. Didn't work for me either. End of Cesamet. It is a form of medical marijuana I think. Heather in Calgary - Original Message - From: Janice Nichols To: Janet Dunn ; fr...@franksheldon.com ; 'Robert Pall' ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 9:54 PM Subject: Re: [TMIC]I tried Marinol too What is cesamet and what does it do for you? Janice From: Janet Dunn Sent: Monday, May 17, 2010 9:52 PM To: fr...@franksheldon.com ; 'Robert Pall' ; tmic-l...@eskimo.net Subject: RE: [TMIC]I tried Marinol too I was on cesamet. Janet From: fr...@franksheldon.com [mailto:fr...@franksheldon.com] Sent: May 17, 2010 1:07 PM To: Janet Dunn; 'Janice Nichols'; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC]I tried Marinol too Marinol didn't work, Then I travelled to Montreal, to the McGill University Health Center within the Montreal General Hospital to Dr. Ware on the 19th floor where he tried me on sativex. One spray under my tongue decreased my pain by 75% within ten minutes. SATIVEX lasts longer than Cannabis and has a brief period of slight euphoria. Sativex has changed my life. F
Re: [TMIC] a lot of discussions going on
Great info, Patti!! Thanks! Jeanne in Dayton, WA ---Original Message--- From: pjv1...@chartermi.net Date: 05/18/10 07:41:54 To: tmic Subject: [TMIC] a lot of discussions going on Great discussions going on: LYRICA I took 1800mg Neuronton, then 2400mg, then switched to Lyrica because the neurontin took too long to work and stopped before my next dose. The Lyrica works faster and steadier at 100mg / every 8 hrs. My Neuro suggested this switch when I complained of the few hours of relief I was receiving from the Neurontin. CYMBALTA I also take 60mg Cymbalta daily. I need it for it's antidepressant qualities and get the added benefit of additional neuro pain relief. It has given me problems with brain zaps that dissappeared after I tried to stop taking it and then went to back on the regular dose. My Neuro switched me from Effexor to Cymbalta at my request. BACLOFEN 10mg every 8 hours for muscle spasms and banding. This med is what allows me to move. My muscles are too constricted without it, but if I take too much I look like a slobbering drunk. I cn take it at 6 hrs if I;e over exerted and my muscles are tightening too much. MEDICAL MARIJUANA - MERINOL I voted for it in Michigan and the vote passed. I don't expect to ever use it for personal reasons, but I think it should be available for those who need it. Our pharmacist said Medical Marijuana wasn't needed, because Merinol works exactly the same. Well, we all know from our own experiences that nothing works the same for everyone so if you need it, so be it. NEURO VS. PRIMARY DOCTOR I found a doctor who heard of TM so I didn't make a Neruo appointment at my six year anniversary in November. However, I also haven't needed any drug changes. It will all depend on how the PCP works with me if I request a chane in meds. TMIC List Both my Neuro and PCP encourage me to learn all I can from this terrific group and pass that info on to them. They don't claim to be know-it-all's when it comes to how bad the pain can get. Patti - Michigan 01_tile.jpg01_side.gif
Re: [TMIC] Neurontin
NeurontinJanet, How did your son make out at the doctors? Are they going to be putting him on some meds to help with his pain? This has to be just so hard for him. Heather in Calgary - Original Message - From: Janet Dunn To: 'Robert Pall' ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 10:45 AM Subject: RE: [TMIC] Neurontin Hi Rob. I couldn't take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my inability to pace myself so I have paid for it with high pain levels in my legs - but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day - so if the pain is high - then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year - he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today - right now he is not managing his pain - he is simply coping with it - I am tough, I can take it (he is 15). He takes 2 percocet in the evening so he can walk the dog - he uses a cane. Good luck with the neurontin - my money is on the lyrica and the effexor - in combination they work wonderful. I do not know what is in Cymbalta, and honestly - I will google it asap. Janet From: Robert Pall [mailto:rp...@neillsupply.com] Sent: May 17, 2010 5:43 AM To: tmic-l...@eskimo.net Subject: [TMIC] Neurontin I went last week to a new Neuro recommended to me by Dr. Kerr. Besides having me take new MRI's including the brain (never had this one before) he is taking me off Cymbalta and starting me up on Neurontin ( 100 mg per day). He saw no reason to be taking Cymbalta as I am already taking Lyrica and according to the new Dr. both Cymbalta and Lyrica do the same thing and taking both of them is not effective it is just overkill. I wonder if any of the other members who are taking both Lyrica and Cymbalta were ever told this.and what should I expect from the neurontin? I am hoping it will help the banding. What negative side effects have any of you suffered with the neurontin? Thx Rob in New Jersey
Re: [TMIC] Cymbalta Lyrica
Thanks, Rob. I know Cymbalta also helps with the pain but I feel 'dull' when I take it, meaning I feel like I'm dragging and no energy. They now have a generic which helps with the cost but haven't heard anything about how it works compared to the name brand. I use the Lyrica and Tramadol together and that seems to really help with the pain but that 'band' pain sometimes takes over and even those two can't help it. Since I've gone to the chiro, I have had tremendous relief with the banding pain. ??? Jeanne in Dayton, WA (5 years May 20) ---Original Message--- From: Robert Pall Date: 5/18/2010 7:00:20 AM To: tmic-l...@eskimo.net Subject: [TMIC] Cymbalta Lyrica I mentioned last week that I went to a new Neuro in New Jersey and he recommended that I stop Cymbalta (cold turkey) wait a couple of weeks and start on Neurontin. His reason was that I am already on Lyrica and Cymbalta does the same thing so I was just supposedly doubling up. Anyway it has been a week since I stopped the Cymbalta and I have started getting terrible banding in both legs and especially around my trunk area. Doing my own test I took a Cynbalta and within a few minutes I started feeling better again. It now appears obvious to me that somehow or other the combination of Lyrica and Cymbalta was working for me and I plan on going back on it. I would appreciate feedback by members who take both of these drugs and how they have helped them. In addition on top of these 2 drugs should I consider the Neurontin to further reduce the banding? Rob in New jersey 01_tile.jpg01_side.gif
RE: [TMIC] Neurontin
Hi Heather Thanks for asking. I just don't know what to think. After raising the TM alarm bells (significantly), the neurologist sent a letter to the family doctor, stating that the problem is organic in nature. That the pain is coming from the brain itself, and not from the spinal cord lesion. That he does have reduced feeling and strength. That he does have decreased sensation. That it is not TM and not MS, but he does not know what it is. Geesh, thanks for scaring the crap out of us. He does have a lesion at T2. He does have significant pain and weakness. They have put him on Baclofen 10 mg 2 times a day, and Carbamazepine CR 200mg twice daily. The goal being to manage the pain and to get him off of the percocet. The neurologist is hoping that he will heal, as he has youth on his side. Am I angry? Yes. Am I frustrated? Yes. This young man has been dealing with this for over a year now, and it has not gotten any better, and fortunately not much worse, other than the pain. The prognosis is just what I said: hopefully he will heal. You would think, that in this day and age, when we can do so much, that somehow they could figure out what is wrong with him. So, a big thank you to all of my TM family. While this is not TM (sorry for passing that on, but that was the info that I had) this is a Spinal Cord Injury. It does not change the tears that I have shed, and will shed. I am at a loss as to what to say, do or think. Janet From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: May 18, 2010 10:09 AM To: Janet Dunn; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Janet, How did your son make out at the doctors? Are they going to be putting him on some meds to help with his pain? This has to be just so hard for him. Heather in Calgary - Original Message - From: Janet Dunn mailto:j.d...@shaw.ca To: 'Robert Pall' mailto:rp...@neillsupply.com ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 10:45 AM Subject: RE: [TMIC] Neurontin Hi Rob. I couldn't take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my inability to pace myself so I have paid for it with high pain levels in my legs - but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day - so if the pain is high - then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year - he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today - right now he is not managing his pain - he is simply coping with it - I am tough, I can take it (he is 15). He takes 2 percocet in the evening so he can walk the dog - he uses a cane. Good luck with the neurontin - my money is on the lyrica and the effexor - in combination they work wonderful. I do not know what is in Cymbalta, and honestly - I will google it asap. Janet
Re: [TMIC] Cymbalta Lyrica
Jeanne I asked my doctor about a generic for Cymbalta because AARP sent me a letter suggesting I try a generic to help cut my copay costs. I don't have the name they suggested in front of me, but my doctor said it was the generic for Effexor and it wouldn't give me any relief with the neuro pain. Do you have a generic name for the med? Patti - Michigan jrushton jrush...@columbiaenergyllc.com wrote: Thanks, Rob. I know Cymbalta also helps with the pain but I feel 'dull' when I take it, meaning I feel like I'm dragging and no energy. They now have a generic which helps with the cost but haven't heard anything about how it works compared to the name brand. I use the Lyrica and Tramadol together and that seems to really help with the pain but that 'band' pain sometimes takes over and even those two can't help it. Since I've gone to the chiro, I have had tremendous relief with the banding pain. ??? Jeanne in Dayton, WA (5 years May 20) ---Original Message--- From: Robert Pall Date: 5/18/2010 7:00:20 AM To: tmic-l...@eskimo.net Subject: [TMIC] Cymbalta Lyrica I mentioned last week that I went to a new Neuro in New Jersey and he recommended that I stop Cymbalta (cold turkey) wait a couple of weeks and start on Neurontin. His reason was that I am already on Lyrica and Cymbalta does the same thing so I was just supposedly doubling up. Anyway it has been a week since I stopped the Cymbalta and I have started getting terrible banding in both legs and especially around my trunk area. Doing my own test I took a Cynbalta and within a few minutes I started feeling better again. It now appears obvious to me that somehow or other the combination of Lyrica and Cymbalta was working for me and I plan on going back on it. I would appreciate feedback by members who take both of these drugs and how they have helped them. In addition on top of these 2 drugs should I consider the Neurontin to further reduce the banding? Rob in New jersey
[TMIC] baclofen pump
hi my name is dennis. i have had tm since 2002. i am getting a baclofen pump put in. has anyone in this group have had one? if so, has it worked? i am a little bit nervous. dennis, texas
[TMIC] Thanks to Obama
You had mentioned in the past that you could only use Sativex while in Canada, and you could not take it across the border back into the U.S.Has that now changed? Yes with the relaxation of Medical Cannabis federal actions, and also many states decriminalizing or at least thinking about decriminalizing cannabis. Dealing with illegal Cannabis use costs lots of time and money, plus many law inforcement personel are users themselves. They are just starting all sorts of experiments on cannibis. Did you know that using cannabis decreases the number of viral infections you have, and I can attest to that. It will keep me from benign prostatic hypertrophy, and who knows what they will find next week. You must realize that Cannabis was criminalized in 1937-8, by congress at the urging of Mr. Dupont of chemical company and Mr. Hearst of Paper and paper products. They were fearfull of modern usage of Cannabis instead of trees ( Cannabis can be used as fuel, and regrows much more quikly. My fingers are giving up Google- hearst,dupont,cannabis. Anyway, the USA is in the process of letting research be done on this age old medication, the first experiments since the 1930's F
Re: [TMIC] Cymbalta Lyrica
I don't see how a chiro can help with the banding pain.What does he do? Janice From: jrushton Sent: Tuesday, May 18, 2010 10:11 AM To: Robert Pall ; tmic ; transversemyelitissupp...@yahoogroups.com Subject: Re: [TMIC] Cymbalta Lyrica Thanks, Rob. I know Cymbalta also helps with the pain but I feel 'dull' when I take it, meaning I feel like I'm dragging and no energy. They now have a generic which helps with the cost but haven't heard anything about how it works compared to the name brand. I use the Lyrica and Tramadol together and that seems to really help with the pain but that 'band' pain sometimes takes over and even those two can't help it. Since I've gone to the chiro, I have had tremendous relief with the banding pain. ??? Jeanne in Dayton, WA (5 years May 20) ---Original Message--- From: Robert Pall Date: 5/18/2010 7:00:20 AM To: tmic-l...@eskimo.net Subject: [TMIC] Cymbalta Lyrica I mentioned last week that I went to a new Neuro in New Jersey and he recommended that I stop Cymbalta (cold turkey) wait a couple of weeks and start on Neurontin. His reason was that I am already on Lyrica and Cymbalta does the same thing so I was just supposedly doubling up. Anyway it has been a week since I stopped the Cymbalta and I have started getting terrible banding in both legs and especially around my trunk area. Doing my own test I took a Cynbalta and within a few minutes I started feeling better again. It now appears obvious to me that somehow or other the combination of Lyrica and Cymbalta was working for me and I plan on going back on it. I would appreciate feedback by members who take both of these drugs and how they have helped them. In addition on top of these 2 drugs should I consider the Neurontin to further reduce the banding? Rob in New jersey 01_side.gif01_tile.jpg
Re: [TMIC] Neurontin
NeurontinJanet, I hope you get more help from the docs for your son and that he does get off the percocet easily.Please keep us posted on both of you. Janice From: Janet Dunn Sent: Tuesday, May 18, 2010 1:00 PM To: 'Pieter and Heather' ; 'Robert Pall' ; tmic-l...@eskimo.net Subject: RE: [TMIC] Neurontin Hi Heather Thanks for asking. I just don't know what to think. After raising the TM alarm bells (significantly), the neurologist sent a letter to the family doctor, stating that the problem is organic in nature. That the pain is coming from the brain itself, and not from the spinal cord lesion. That he does have reduced feeling and strength. That he does have decreased sensation. That it is not TM and not MS, but he does not know what it is. Geesh, thanks for scaring the crap out of us. He does have a lesion at T2. He does have significant pain and weakness. They have put him on Baclofen 10 mg 2 times a day, and Carbamazepine CR 200mg twice daily. The goal being to manage the pain and to get him off of the percocet. The neurologist is hoping that he will heal, as he has youth on his side. Am I angry? Yes. Am I frustrated? Yes. This young man has been dealing with this for over a year now, and it has not gotten any better, and fortunately not much worse, other than the pain. The prognosis is just what I said: hopefully he will heal. You would think, that in this day and age, when we can do so much, that somehow they could figure out what is wrong with him. So, a big thank you to all of my TM family. While this is not TM (sorry for passing that on, but that was the info that I had) this is a Spinal Cord Injury. It does not change the tears that I have shed, and will shed. I am at a loss as to what to say, do or think. Janet From: Pieter and Heather [mailto:pieterheat...@shaw.ca] Sent: May 18, 2010 10:09 AM To: Janet Dunn; 'Robert Pall'; tmic-l...@eskimo.net Subject: Re: [TMIC] Neurontin Janet, How did your son make out at the doctors? Are they going to be putting him on some meds to help with his pain? This has to be just so hard for him. Heather in Calgary - Original Message - From: Janet Dunn To: 'Robert Pall' ; tmic-l...@eskimo.net Sent: Monday, May 17, 2010 10:45 AM Subject: RE: [TMIC] Neurontin Hi Rob. I couldn't take neurontin. I am on Lyrica, have been for four years now. 75 mg a.m. and 150 mg p.m. It has virtually stopped the banding, and the burning in the feet. I am actually going to lower the dosage to 75 twice a day. However, that has been delayed because of my inability to pace myself so I have paid for it with high pain levels in my legs - but not nerve pain. I am also taking effexor, welbutrin, and long acting oxycodone. I supplement that, as needed, with regular oxy during the day - so if the pain is high - then oxy during the day, or baclofen, - it is a tricky road so I monitor my symptoms constantly. I am seeing a pain specialist in Vancouver BC three times a year - he just writes a script for many months, and I fill as I see fit. That is how it works here in Fort St John. Now, with my son exhibiting what the neurologist is labeling TM, I have no idea what the doctor is going to do here in town. We will find out today - right now he is not managing his pain - he is simply coping with it - I am tough, I can take it (he is 15). He takes 2 percocet in the evening so he can walk the dog - he uses a cane. Good luck with the neurontin - my money is on the lyrica and the effexor - in combination they work wonderful. I do not know what is in Cymbalta, and honestly - I will google it asap. Janet
