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-   -   Stopped Mexilitene after failed trial and now pain is excruciating... (https://www.neurotalk.org/peripheral-neuropathy/235737-stopped-mexilitene-failed-trial-pain-excruciating.html)

Mamadebski 05-10-2016 09:29 AM

Stopped Mexilitene after failed trial and now pain is excruciating...
 
I started a trial of Mexilitene, a sodium channel blocker, to try to control my pain - I have Erythromelalgia, small fiber neuropathy and fibromyalgia. After enduring worsening side effects from the Mexilitene (rapid heartbeat, dizziness, foggy brain, nausea & chest pain) I ended up in the hospital overnight to check my heart for any damage. Fortunately, there was none. The only benefit I thought I was getting from it was that my muscle spasms had completely stopped. Unfortunately, now I am wondering if I was getting more pain relief than I thought, because now I am in excruciating pain - I can feel every cell in my body and I feel as if I have razor blades going up and down my spine - into all of my nerves. Does anyone know if coming off of a treatment like this can exacerbate my condition, or was I just in so much pain and am now feeling it now after having it be dulled for a while? Just looking for similar people out there.

Patrick Winter 05-10-2016 10:33 AM

Quote:

Originally Posted by Mamadebski (Post 1210815)
I started a trial of Mexilitene, a sodium channel blocker, to try to control my pain - I have Erythromelalgia, small fiber neuropathy and fibromyalgia. After enduring worsening side effects from the Mexilitene (rapid heartbeat, dizziness, foggy brain, nausea & chest pain) I ended up in the hospital overnight to check my heart for any damage. Fortunately, there was none. The only benefit I thought I was getting from it was that my muscle spasms had completely stopped. Unfortunately, now I am wondering if I was getting more pain relief than I thought, because now I am in excruciating pain - I can feel every cell in my body and I feel as if I have razor blades going up and down my spine - into all of my nerves. Does anyone know if coming off of a treatment like this can exacerbate my condition, or was I just in so much pain and am now feeling it now after having it be dulled for a while? Just looking for similar people out there.


Isnt that a drug used to treat heart arrythmias? Never heard of it being used for nerve related disorders. WHy did your doctor decide to go that route and not the more obvious drugs for your condition?

Mamadebski 05-11-2016 06:24 AM

50/50 shot
 
There is new research being done that shows that sodium channel blockers can alter pain translation when genetic variants are at work for those of us with inherited Neuropathies. Mexilitene is still being used, though not as often, due to the side effects for off-label use to treat neuropathic pain. It was a 50/50 shot that this would work. It has worked for some people. Researchers are currently working on developing more specific sodium channel blockers with less side effects. I am hoping to try something new someday.

Patrick Winter 05-11-2016 11:11 AM

Quote:

Originally Posted by Mamadebski (Post 1210910)
There is new research being done that shows that sodium channel blockers can alter pain translation when genetic variants are at work for those of us with inherited Neuropathies. Mexilitene is still being used, though not as often, due to the side effects for off-label use to treat neuropathic pain. It was a 50/50 shot that this would work. It has worked for some people. Researchers are currently working on developing more specific sodium channel blockers with less side effects. I am hoping to try something new someday.

None of the standard stuff worked for you? And what about supplements?


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