I reluctantly started tegretol 200mg last night (at midnight) due to an increase of attacks. I have ATN w/occ TN features. My TN-like flares occur once every two weeks, yet I have ATN pain daily and it usually hovers around a level 4, once a week will shoot up to a 9 or 10 for a few hours. I originally asked my local neuro for two single doses of low dose narcotic to use during these monthly "can't handle it anymore" flares (other times baclofen, caffeine, ibuprofen, and sheer will get me through) but instead she put me on daily tegretol, which I understand may affect my liver tumors- hence you see my reluctance.
So, I normally wake up at 7 am... today I could not get out of bed untl 10 am due to these side effects (which I am wondering if they have occurred in others):
weak arms (like jello)
uncoordinated feet (shuffled gait)
eyes rolling in two different directions (had to keep eyes shut for a couple hours)
SEVERE headache (hours later and I still have it)
intestinal cramping
and...rebound TN pain. I am actually having a TN flare today WORSE than I have in a long time. I am guessing this is rebound pain due to the time of flare setting in as the half life of the tegretol wears down.
In my past I have failed 30+ medications for management of health issues, most being migraine type meds and I do suffer from "paradoxical reaction" to certain classes of meds. This tegretol was rx'd by my local neuro, so I am hoping my neuro at Mayo will have better tx ideas come March, but for now I am curious if anyone here has had similar issues??
I had real issues on tegretol which I have been told most of them arent side effects. I have learned on here though that they are and some are quite bad. I experienced severe pain in my legs on it to the point where I could not put pressure on either leg it hurt so bad. I took forever to get out of bed in the morning or in and out of a car the pain was so intense. Once I stopped taking it , I got somewhat better, but here I am six months out of it and my legs still hurt and I now have restless leg syndrome as well. I also have developed litterally overnight carpal tunnel syndrome. and I still feel that the tegretol seriously screwed up my body. Getting a doctor to agree with me is another matter though.
I also have bizarre reactions to drugs and am allergic to just about everything, so I truly believe that all the side effects you are having is directly related to the drug, or possibly made worse by it.
I am on 1200 Tegretol daily and I still work. I AM tired all the time though and have a few other small side effects. If it is affecting you this badly, you may need to talk to your doctor.
Hi, Thanks for sharing. I have suffered with TN for 17 years, only diagnosed 3 yrs ago. I tried tegretol - way too many side effects for me. I could not walk straight or keep my balance. Headaches, fatigue, nausea etc. I take an extremely small dose every night before bed. I think it lessens the pain when I have an attack. Although somedays, I think it does nothing. I am pain free (thank God) for 6 - 7 days and then it hits. I am lucky to only have it on my right side, through my jaw, my ear and up the right side of my head. Feels like a knife jabbing it's way through my ear and excruciating jaw/tooth pain and then a migrane on my right side, It lasts about 24-48 hrs or so. I recently tried a lidocaine patch prescribed by my dr. I cut it into small strips and place it under my ear lobe and across the jaw. It relieves some of the pain and for that I am thankful. Tonight has been unbearable. Cant lay down because it gets worse. Just sitting here waiting for some relief.,...I don't take any other meds, I just try my best to wait it out.,,very difficult thing to do, Today I just wanted to die, but that too will pass. I work full time and it makes it very hard to keep up, as we all know. When I have a pain free day, the world knows!!!!! I pray for you and hope that you can find some relief. I don't take kindly to meds, so for me, I just do the best I can and pray for relief.....I wish you well and send blessings your way Im sorry I can't be of any other help.
Nancy Oh, I do see some others talking about Vitamin B12 - I am going to try that tomorrow. All the best
I have suffered with TN and MS for 20 years. Both are getting worse now. Tegretol has been the one drug I can count on. I take 800mg TegretolXR (time release) daily and when under attack like now, increase to 1600mg which is max. Yes, it is a powerful drug, but in my case all side effects go away in a few days as my body adjusts. Tegretol is an anti-convulsant and when it's not enough to keep it from flaring my neurologist adds others til it goes back into remission. Hope this helps.
I have suffered with TN and MS for 20 years. Both are getting worse now. Tegretol has been the one drug I can count on. I take 800mg TegretolXR (time release) daily and when under attack like now, increase to 1600mg which is max. Yes, it is a powerful drug, but in my case all side effects go away in a few days as my body adjusts. Tegretol is an anti-convulsant and when it's not enough to keep it from flaring my neurologist adds others til it goes back into remission. Hope this helps.