Hi people. I'm glad to have found this group. Don't know why it took me so long. I sped through my profile so that I could ask this question, but I'm happy to share more of my story with anyone who's interested.
I've been taking Tegretol since the day of my diagnosis, just over two years ago. I ramped up quickly from 800mg to 1600mg and stayed there for a year with no pain at all. Then, a few months ago, the pain started to break through. It was very erratic and not bad at first. But now, in the last few days, especially today, I'm right there in the trouble zone. Trouble eating, talking, brushing my teeth, swallowing.
My Neurologist is very hard to reach and I realize now that I need a new doctor. She had suggested switching to Trileptal a few months ago. But today she said that I should keep the Tegretol and add Gabapentin. And lose weight.
I had a tegretol level drawn today so I'll know tomorrow where I stand with that.
My questions are:
Does Trileptal work for people in whom Tegretol has failed?
Does Tegretol/Gabapentin work? (I took Neurontin once, a few years ago and I think it almost knocked me out.)
Has anyone experienced weight loss helping Tegretol to work better? It's true that I've gained about 10 pounds since December. Could that be part of the problem?
Can anyone recommend a neurologist in Boston who manages with drugs, not surgery?
I have a million more questions but also lots of reading to do here on these boards. If anyone has advice, I am , as you all know, pretty uncomfortable and hungry.
Best-
Faye
Hi zapgirl. I don't have classic TN, I get the 24/7 constant ache, but I can answer some of your questions for now until someone else responds.
Yes, Trileptal can work in people who didn't have success with Tegretol. They're very similar drugs, but from what I've read, Trileptal doesn't have as bad of side effects, which can allow you to take a larger dose. Or you just might respond to it better.
I've spoken to many people who have taken Tegretol and Gabapentin together and successfully control their pain. Some people get by with Gabapentin or Tegretol by themselves. It varies. Since the side effects of the meds can be tough, some people find that when they take a med combo, it enables them to take lower doses of each of the meds.
I don't know that weight loss will help Tegretol work better, I've never read that. However, having a healthy weight is a good thing in general. Maybe someone else will know why the doctor would say that.
As for recommending a doctor, there's a tab called "doctors" at the upper area of the page. Click on that and you will find doctors that have been recommended by members of the site, and have gotten a positive review in their ability to treat TN.
Feel free to ask any questions -- there is no such thing as a dumb question, especially when dealing with TN. I hope you feel better soon.
i am on a combo of three different mesications and i have never been pain free but it helps to make me function to a level where i can eat and work. the side effects i find you just have to try to get through them as best as you can
Im on Tegertol 400mg a day (i know low but my tegertol levels are always high even on this dose, Im on 600mg of Gabapentin 3 tims a day and 50mg of amitritline at night. when i frist started tegertol i had no side effects, add in gabapentine I got some chest tighting for about a week while on it and with these 2 toegther i wass tired all the time, the side effects have gotten better and i find as long as im able to function and sometimes force my self out bed when i feel like a zombie it helps lessen the side effects the amitiptyline knocks me out so thats why i take it at bedtime. i hope you do find something that works for you.
Andrea
before med switch...while waiting, ask your general doctor or current doc to call you in RX of lidocaine patch or cream or both --- helps when I changed, lowered meds!
Get the book Striking Back - by Ken Casey -- and learn ALL you can!
Ask away!
Over here Tegretol is still the first line in treating TN and to be on anything else (funded by the government) you need to have failed (by way of side effects, reactions etc) at Tegretol first (which I did so I got gabapentin) and if that fails then it's pregabalin (Lyrica) which isn't funded.
All I can say is don't be frightened of meds, no matter what you hear different people react to drugs in different ways and what works or doesn't work may not be the case for you. A combo might work, you never know :)
Hi Kc Dancer. I just got off the phone with my neurologist and she said she'd call in the lidocaine, but she was very, very skeptical and didn't understand how it could touch the nerve pain. I'm happy about trying it and am hoping that it works, but I was also wondering, what kind of TN pain do you use it for? I'll check out the book, too. Many thanks for your suggestions. I appreciate them.
Kc Dancer Kc said:
before med switch...while waiting, ask your general doctor or current doc to call you in RX of lidocaine patch or cream or both --- helps when I changed, lowered meds!
Get the book Striking Back - by Ken Casey -- and learn ALL you can!
Ask away!
Thanks, Porcelina. I've had such good luck with Tegretol that I'm feeling really sad that it's not working. I guess I got some false confidence. I have the gabapentin now. Not sure I'm going to take it but I like knowing I have a backup plan. Thanks for the vote of confidence. I need it.
Porcelina said:
Over here Tegretol is still the first line in treating TN and to be on anything else (funded by the government) you need to have failed (by way of side effects, reactions etc) at Tegretol first (which I did so I got gabapentin) and if that fails then it's pregabalin (Lyrica) which isn't funded.
All I can say is don't be frightened of meds, no matter what you hear different people react to drugs in different ways and what works or doesn't work may not be the case for you. A combo might work, you never know :)