Thank you so much for replying....it'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 symptoms,,,,uggg! > > ------------------------------ > *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:* 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**** > > > > >
