Officially diagnosed with TN in early April. Been on Tegretol xr at bedtime only as a day dose made it difficult for me to work. Had 2 episodes of TN before diagnosed in April. Since been on medication was doing well, Only mild incidences until last Wed. night. Pain became unbearable. I think or should I say pretty sure have type 2 TN and type 1 TN. Played email tag with nurses/pa's at my neurologists and was given a 50mg chewable dose to take and on 5th day increase to 100mg. Well pain decreased some where I had at least moments pain free but still had plenty of pain. On the day I increased to 100mg I started feeling agitated, itchy and had some hives, my eyes hurt, etc. so I called neurologist office. I am extremely careful cuz I did have Steven Johnson Syndrome a year ago from an allergic reaction. My body sometimes looks like it is tolerating medication and then after a month or so it is if my body is rejecting it or a toxic enough level has developed and I start having "allergic like" reactions. I never want to get SJS again. It was scarey for me and my family as my lips, mouth and throat were full of sores and peeling. Well after numerous calls back and forth....they want to see me today so I will be heading to dr. later this morning. They said they want to discuss a new plan of care. I can not take gabepentin or lyrica...tried those for a nerve pain in leg several years ago and thought I was flipping out. I am thinking they are maybe going to suggest topamax. Anyone out there on this and what effects? I hear hair loss is a big? I don't want to lose my hair. My son is getting married late summer. Has anyone with TN type 2 had the surgeries? With what success? I am so frustrated right now that I have a hard time not crying. I cannot help that my body does not like medication. I am typically active person who runs, walks, bikes, golfs, gardens, etc.....I have tried to be tough and tolerate the pain but I can't. It is aging me very fast. I have continued to try to do the things I like as I don't want to let this TN win.
I'm so sorry --- Mimi I believe had / has MVD for type I and II
Can you ask for some topical lidocaine patches? or cream?
Must be careful of SJS
Topomax - some here are on it with success--- you might lose your appetite with it and weight
To grow extra hair --- I finally learned BIOTIN chewables -- / sublingual or reg. caps 2500 or 5000 a day
I know it works because my hair grows 1/2 the rate normal
Most get 6 inches a year -- I got 3 --- and I know this because that is how long it took to get my little patch of MVD hair back - and that was WITH intermitent biotin! Now I'm back to taking it every day cause thyroid making my hair thin.
Its a B vitamin - with no side effects here ---
Keep Posting!!!
Thanks for info. I am thankful that flare up is gone. I still have some pain but not constant and not severe. We have a plan for if/when a flare comes again. It includes the lidocaine. Also back to tegretol xr at bedtime only. The immediate release was too much for me as I am super medication sensitive. Thinking about trial of topamax. It may work and it may not bother me but I am very fearful of most new meds as my body just doesn't like much. Or stay with the tegretol xr and hope that the lidocaine will help me through a flare. I have started taking daily vitamin, b12 and biotin. We will see. Have trip to Canada in July so trying to have a plan in place so that if I have a flare I will have medication to help me through it. Next appt. July 2nd. If anyone has experience with topamax would appreciate any info you have. Thanks
I had taken Topomax initially. I went from 25mg a day at first, and rapidly increased to 400 mg a day, under drs orders. it never gave me more than 30 % relief, and made me a zombie. only good side effect was that I lost 10 lbs in a month!When I got to RIGHT neurologist, he diagnosed my TN, and told me not only was Topomax the wrong drug for TN, I was taking too much! Topomax is not one of the preferred meds for TN.
FYI, I have bilateral ATN, or TN1 and 2. I had MVD in the end of January of this year. While I am still healing from some minor complications, I cannot say I am pain free, but my TN2 pain has greatly decreased on the surgery side. I am hoping for more improvement as the nerve takes up to a year to heal, but I would do it again for sure. I will have the other side done later this year.
Best of luck to you!
Christine