Hi Everyone,
I am so pleased to know there are other people that I can relate to. TN has severely affected my life on a daily basis, thank you all for your posts. Mentally and emotionally i feel SO much better knowing that I can deal with this like you all have, and knowing some of you have gone into "remission" for at least a little while has brought me comfort, and I don't feel as depressed.

I thought I had an ear/sinus infection and went to my ENT doctor. It was probably my 3th or 4th visit when he diagnosed me. He was hopeful that it was a virus and would run its course. He put me on Neurontin right away. Bad. Within two days my limbs were going numb and the first time I took 4 a day, I woke up the next morning slurring and looking terrible and feeling really weird. I went to see dr that morning--so he could see the side effects of the meds and he put me on Tegratol. Doesn't work as well for the pain as Neurontin, but i have zero side effects. i am now taking 9 100mg pills a day.

He said last week that my condition has become chronic, and has referred me to a neurologist/pain specialist that I will be seeing this Friday. I really want to keep seeing him because I trust him, but he told me that he really isn't supposed to be treating a neurological condition. I hate going to new doctors and starting all over. I've known my ENT for years and i really like him.

I've been dealing with this pain for several months--close to a year, and I think I have figured out what meds work best for me at least for now (well, you know--nothing takes it away completely....). I've read on many threads that regular pain medicines don't work. I agree for the most part--most don't even get near this God awful pain. What works for me is 900mg Tegratol taken throughout the day and 1 HYDROCO/APAP 10-500 every 4-6 hours seems to keep the pain at a level where I can function--I am able to do a good job at work, get an okay amount of sleep, and be a good mom. I still have pain everyday, but it's at around 4-5 rather than 9-10, and to me that's a God send. This pain is so terrible. And not having a light at the end of this tunnel is even worse.

Okay, my question to you guys: If this works for me, is it dangerous or bad to stick with these meds until my pain (hopefully sooner than later) subsides?

Thanks ahead of time for your advice. You all have helped me SO much already!

Hi carrylyne welcome

all 3 of the meds you mention are used quite often for controlling the pain of t.n. ,so I do not see any bad by using what works for you. as long as you are going by what your doctors prescribes and not uping it or trying other things without doctors advice..as far as med I mean.. holistic methods are fine to try like reiki or vitamins and such..
I think you are doing the right thing .
Maybe others will be by to post what they think but I am sure the meds you mentioned are used allot for t.n. and heck thats about all the doctors,neuros will do untill it gets unbearable and then surgerys become an option. I pray the meds continue to help knock down the pain and controll it for you.

let us know how things are now and then and I wish you low pain always and forever.
If any of us can help you let us know ...keep in touch .
PEACE
BMW

Thanks so much for your response BMW. It's very comforting to have a little support--even if it comes from somewhere in cyberspace I have my first appt with a neurologist/pain specialist tomo morning. i'm nervous, but hopeful. Will keep posting with updates! Thanks again!

Cheers
CW

Consider yourself CYBER-HUGGED not just by me.....

but..........the whole CYBER-Bunch ! !

PLEASE keep us updated!
Good Luck with your appointment

Rae

Thinking of you and hope your Apt. today goes well

I can understand the appeal of going to a doctor you already know and like but I think it's better to go to a neurologist. They usually have much more knowledge of and experience with TN. Hopefully you will find a neurologist you like and trust!

Hi Carrylyne, Hope things go well at your apt. Thinking of you. xxxxxxxxx

The Tegretol helped me and prevented suicide! But word of caution...get on vitamin D right away as Tegretol can trigger kidney stones (I had 6 at once!) and it says in the literature with Tegretol that it can cause the stones! Made a believer out of me! Any road, be sure to take the vitamin D and get enough calcium so you wont get the stones!