Anyone else taking Tegretol to help with the “nerve” pain from EM? I started taking it Monday (100mg 2x daily) - having a range of side effects (dizziness, zombied-out, extreme fatigue/sleeping, headache). I’ve been told that this should go away in 2-4 weeks. It has helped quite a bit with pain, but maybe that’s because I’m so out of it… 
Sorry about this tough reaction. I am taking Gabapentin, otherwise known as Neurontin. I take it for MS nerve pain. My rheumatologist raised the dose (slowly)
to see if it will help with the EM pain.
I am having a swollen and painful big toe. It’s happened to me before I presented the EM symptoms. I have neuroma’s in the balls of both feet too. I feel like jumping out of my own skin. Between the MS and all this (and some other issues with autoimmunity I’m very disgusted.). I will be seeing a vascular doctor I found next week. Supposedly he has treated EM in the past. He’s about 70 years old.
Please, if the symptoms last with the Tegretol maybe you should call the doctor.
Good luck to you, Gardengirl 414.
I’ve been on it for about 6 weeks and though it still makes me a little drowsy, those extreme side effects have gone away. When I feel the drug coming on my scalp gets itchy and tingly, and I consistently have a good cry for about ten minutes, but I’m a cryer. Otherwise it’s been the best for me so far and I’ve tried so many others, and the negative side effects from those were much more than any positive.
1 Like
Most of the side effects have gone away - and so has some of the effectiveness. Mind you, it has helped quite a bit still! Also - have any of you noticed a decrease in swelling while taking Tegretol? I do still have some swelling:pain events, mostly triggered by hot weather and being up and walking a lot, but they seem to resolve more quickly now. In the past, just being in weather above 80 degrees caused a large amount of pain/swelling that continued to slowly worsen and seemed to last for days to weeks.
Mmmm, not sure if the swelling is better. Even though I don’t think I’m doing better–because things suck so much–really, when I assess where I was before the Tegretol, I am doing somewhat better. But I made several changes at the same time. I completely embraced open toed shoes or barefoot–no more shame–and I’m seeing a pain psychologist who has helped me practice mindfulness so that I’m not dwelling as much. Also, I finally gained about 10 more lbs so that my weight is so much more stable, stronger, and so now normal things don’t set off a full body meltdown like they had for way too long (like 20 years, it’s been a long road–not just these most frequent 10, I’ve gained incrementally over the 20 years, it’s just that I really resisted these last 10, long story of my life). The side effects from the Teg. have mostly passed. I live in a hot ass place–Sacramento, CA. You?
1 Like
I’m in MI…so not always hot…but it’s been fairly warm lately. Dr just upped my Tegretol dosing at night - 50 mg in am, 200 mg in pm. Can’t say that it’s helped much. Most of the early relief that I had has gone - still a bit better, but not as much as I saw in the first two weeks. Oddly, the swelling in my feet and lower legs is still fairly controlled - I still swell, but not nearly as bad as before the Tegretol.
How you doing now? I’m taking 400 mg. Told my Dr. I want to try to increase–he hasn’t responded yet. I did an experiment (Dr. wanted me to) where I dropped down to 300 mg and my pain increased significantly, so I think it actually is helping me function somewhat better. Hope you’re doing okay.