Thank you all. I am so happy that you have found ways to manage this. I am at a lost. The Terg made me horribly Ill and set off my ulcerative colitis. Reading now about all these drugs and this other condition it most probably was not the right one. You see I also have osteoporosis and just recently broke my wrist because of it. I also need sodium as I don’t have a colon. I guess that eliminates the sister drug. As for the antidepressants, nope I take lexapro for anxiety. I would hate to give this one up then I’d have to be drugged up on Xanax. I am alone all day and need to be functional. I’ll look into gabrapentin. Right now I’m trying cold laser theraphy and Accupunture. I don’t think I’m a candidate for surgery as my neuro is not convinced I have TN but maybe ATN? I really don’t understand all this and find it very stressful. Maybe I’ll go back soon to pain management, but I must be functional and be able to drive and that is what is scary.
Susan,
It sounds like you are out there working as hard as you can to figure out an answer. Don't give up. You will eventually get there.
rissmal
there are so many good options to relieve/stop pain
I have had 2 glycerol injections in 35 years – painless
and pretty much risk free… meds never helped me
see a neurologist who specializes in TN
I saw a neuro who said it was tooth issues and just sent me to pain management. I can’t seem to find one here in NY that specializes in TN thank you I’ll look into this
Hi. I would seek a consult with another neurologist. I got lucky, being from out of town, my sister had a doctor friend who sent me to the neuro that helped me. Perhaps a search for neuro who have experience with TN? Are you in NYC or NY upstate?
I’m in the NYC area. Thank you
I love how doctors think MORE medication will be better. I know in some cases that may be true but they dont have to sit through the side effects. Stay strong and know you are never alone here.............=)
AMEN OSUBUCKS1!!!!
Hi Susan welcome, yes being diagnosed with this can be scary, i was very scared too, a lot to take in, Tegretol I think is different for everyone, I’m on ■■■■■■■■ now it took some getting use to, for me it helps take the edge of but still fee like a zombi, im in pain everyday and on other medications as well, there are other medications, let your doctor know how you are responding, hope you are feeling better today.
Hello, I was diagnosed yesterday after my first (and I wish my last) episode of TN last week. It was like a giant toothache both in the upper and lower jaw area. My chin, lower lip, is still numb but I have had no pain since Monday - Its now Sunday morning. My neurologist is testing to see if I have vitamin B toxicity but in the meantime she has put me on neurontin. I am wondering why I should take it if I have no symptoms right now. Won't that mean I will become habituated to it before I actually need it? I am also concerned about being nauseous, off balance, dizzy and have a fuzzy head. Thanks for any feedback you can give me.
Susan,
Among all of us who have TN, we use different meds or a combination thereof. There is not one cure-all so I don't know what your oral surgeon is talking about. I originally took Carbazepine but after a single pill I couldn't function at all: Slurring my words, impaired vision, falling into walls, just awful. I was switched to grabapentin which helped the pain but, after some time, I couldn't continue with it because it was making me too tired to get anything done. I'm on lamotrigine now with no side effects (I'm lucky). It keeps the pain at bay for the most part. Keep reading and you'll find that many here have gone through many drugs before finding that one that works best without too many side effects.
Susan Mella Schwartz said:
Thank you, I did see my pharmacist who never heard of this treatment for Facial pain. I guess around here it's pretty rare? My oral surgeon insist that this is the only drug that will work but only till you get to the 600 to 800 range. Any other drugs in the class are a waste of time. IDK I've dealt with major health issues with many doctors but have never been been treated so blindly unless he is right? Idk, the neuro does not agree with him that this is even TN but he is insisting that it it.
I'm a year later in this but the medical cannabis card amused me.
I'm from New Zealand and would have to pay heaps for that.
I,ve just started Pregabalin which is similar to Gabapentin and a new one.
I just start 3 times a day (full dosage tomorrow) and no bad reactions or sign of less pain.
Gabapentin or carbamazepine are out for me as they threw too many pills at me too quickly and I ended up in hospital.
hi,
I am also in you state. It is very hard for me to accept that my life has changed. please stay connected so that we can share our feelings and feel not left out