I feel like u are the only people that understand. yet, I feel like I have gotten what I can from everybody here. There doesn't seem to be much else. When I come on here I keep hoping to hear stories of recovery and when I don't hear them, I get even worse. Trying to "hang on" like I've been told, but don't see much point.

You can have hope that some of the meds they have today and that you haven't tried yet will offer enough pain relief to get some of your life back.

I have that hope for you.

Debi from Georgia

Canagirl: You're right, there aren't a lot of stories about people making full recoveries. (I suppose the few that do fully recover don't need this forum anymore, they just go back to their previous life.)

But every time I read some posts here, I see people who are managing their disease. Some are getting better, a little at a time. Some are holding steady, but finding better ways to cope with whatever their personal reality is. Some are going downhill, but are making the best of every day they have.

But they all have lives. Maybe not the same lives they had before - but they have lives. And, those lives have value to them.

As long as your doctors are still running tests, and trying various medications and therapies - there is still hope for improvement. Seek pain relief in the short term. Once you get the pain under some measure of control you can return to searching for things that will slow down, stop, or even reverse the disease process.

My twitching reduced 90% also on the gabapentin-nortriptyline combo. I was on that combo for almost year before I tried stopping the nortriptyline. I went 2 months without the nortriptyline and it was a terrible mistake. Burning all over the place and I couldn't function well.

This is more of an art than a science. Take your medication for several months and find some relief. Then try tweaking or reducing medication levels. I used to say that I will never take medication of any kind.....well this condition sure changed my mind pretty quick.


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[QUOTE=madisongrrl;1139127]My twitching reduced 90% also on the gabapentin-nortriptyline combo.

question...when you guys say "my twitching reduced 90%" did you mean you have 90% less twitches or is the intensity of each twitch reduced by 90%

right now the nortriptyline isn't reducing my twitches AT ALL (I still have 100+ twitches per minute everywhere in body all at the same time. However, the overall intensity of my twitches (how strong they are) has gone down.
I was hoping the nortriptyline would reduce the number I get, but it hasn't. I am wondering if gabapentin will actually reduce the number I get.

[QUOTE=madisongrrl;1139127]My twitching reduced 90% also on the gabapentin-nortriptyline combo. I was on that combo for almost year before I tried stopping the nortriptyline. I went 2 months without the nortriptyline and it was a terrible mistake. Burning all over the place and I couldn't function well.

madisongirl,

so.. would you say gabapentin does a better job at controlling the twitching (and maybe parathesias) than controlling the burning?
And that nortriptyline is the med that does a good job of controlling your burning?

When I say 90% I mean I went from intense and frequent twitching all over my body to hardly twitching at all now. Understand it took almost 1 year of time while taking medication.


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Well that's good to hear that it actually reduced the number of twitches. All in all in took about a year to get 90% relief... oh my! How long were you on it before you noticed that your twitches started to reduce?

I've been on gabapentin since Feb 2014. The twitching didn't start to settle down until Oct/Nov 2014. Now I can say I hardly twitch at all. One twitch here and one twitch there. I'll take it.

I added nortriptyline in April or May 2014. I stopped it for several weeks this winter - specifically prior to my ENT appointment (it can mess up the ENTs testing). Then I decided to put it back in because I had felt significantly worse. My pain has been somewhat manageable and I have been very functional at work. I still get burning, facial pain, dizziness, tingling, the feeling the someone is gripping my spine or pushing a window screen into my back.....but all these symptoms are better controlled with my medication combo. And I can now be rational about what steps I'm going to take next to figure out what the heck is going on with my body.

I keep thinking I have pinched nerves. At the very least around my elbows. The area around my elbows is so sensitive that resting my arms on a table or desk sends tingles and small amount of pain down my arms into my hands. I also have a something twitching near my right elbow (I don't know, muscle, nerve, blood vessel.). It feels different than all my other twitches (it sends tingles all on its own) and I have had this twitch for over 6 months. It gets really bad when I am sitting at a table or desk with my arms up. Is this normal neuropathy or pinched nerve? I did have a couple ncv/emg but they all only testing my lower arm and leg (below elbow and below knee).