I was officially diagnosed yesterday with both Type I and Type II TN. Neuro put me on Tegretol, but my pharmacy had to order it, so I'm picking it up today, and will start it tonight.
SO happy to finally "officially" be a patient.. now let's hope I can get some relief.
Doctor told me the main side effect of Tegretol was drowsiness.. anything else I should be on the lookout for? My current dose is 100 mg.
I am a bit forgetful too. The drowsiness has kind of gone away for me. Maybe the longer you're on it, the better it gets.
Glad you got a diagnosis! That can be the hardest part of this disease . I just want you to know that I became allergic to Tegretol after I was taking it for about 3 weeks.the first sign is itchy rash. Be sure to tell your dr. immediately if you get this, because there is RARE possibility that you can get quite ill.
I don’t mean to frighten you, but want to be sure you are aware . I wish I could take take Tegretol, it worked so well. I hope you find some relief soon!
I have a check-in call every week starting Monday for a month, before she'll even call in refills.. apparently, negative side effects are quite common?
AuDz, congrats on your diagnosis, although sorry at the same time…you know what I mean.
I would reccomend having a plan with your doctor on how to increase the med should you not be getting adequate pain coverage. It does take time however for the Tegretol to build in our system and a therapeutic level to be reached. Make sure you’re aware of all potential side effects, what’s normal initially and what constitutes not normal.
You will feel drowsy and heavy, we all react differently so hard to say. But be patient…expect a few weeks of not quite feeling yourself.
Good luck, I hope you start to get relief from the pain soon.
(( hugs )) Mimi
I'm up to 200mg daily now, with little noticeable side effects, call back on Monday. So I'm thinking it'll be increased again.
Here's my new question.. I wore my hair down (hair hitting my face is a HUGE trigger for me) for the first time in months yesterday, pain free. However, I did get, instead of the pain, a weird.. tingle, for lack of a better word. Same sharp, quick stab as the pain was before.. but it didn't hurt. Is that normal?
There is no normal for TN - we are all having/had weird versions of what normally happens.
IF you get too druggy and need to focus and have energy - I asked dr for Ritalin - for those days that I really had to be on my toes mentally.
While wating for meds to go up - or for breatkthru pain - keep in mind to ask for lidocaine patches - helps MANY