Newbie TN diagnosis
 

I was diagnosed with Bell's Palsy 3 1/2 years ago on the left side of my face. This was the beginning of my pain.

One day i noticed I had a metalic taste in my mouth, that night when i was in bed I had a severe sharp pain behind my ear that only lasted a few seconds, next morning i woke up and noticed my face was paralyzed. Went to the doctor, got prednisone. Got some of my movement back about 6months later, took about 2 1/2 years to get the rest back with only mild weakness. I have had pain on the left side of my face since i started getting it back, and my doctor at the time said it was normal and not to worry about it. I had the twitching, tightening, spasms, voltage like streaks of pain, pressure, swelling and aching pain on the left side since.

It would get so painful that I would have to knock myself out with something or I just sit there with tears running down my face.

Earlier this year the pain started moving to the other side of my face. At first I ignored it, thinking it was just random, until it got worse. I was having episodes of pain and aching pressure from my temple and forhead down along my jaw and across my cheek on both sides of my face at the same time, sometimes only one side at a time. Unbareable pain. I would want to sit there and hold my face, but I couldnt touch it because it would make it worse. I lost my insurance about two years ago and havent been able to get any since, so I didnt want to go to the doctor and have them tell me what my previous one did, that there wasnt anything they could do and to just deal with it.

I ended up going to the ER because I couldnt take it anymore about a three months ago and got a shot of something that only helped for about 2 hrs. The doctor gave me a prescription for carbamazepine and tramadol and was told to find a doctor.

Unfortunately, I had an allergic reaction to the carbamazepine and the tramadol does nothing.

I finally went to another doctor and they said Trigeminal Neuralgia on both sides. My doctor is leery of giving me anything for the pain since i had a bad reaction to the carbamazepine and was supposed to give me a referal to a neurologist. I am waiting to get in to see a neurologist. It isnt likely to happen soon as I do not have insurance since the insurance through my employer will not cover pre-existing conditions.

I can't talk or smile much or hardly touch parts of my face without causing pain, my hearing is so sensitive that I drive myself crazy and have to cover my ears a lot. Loud sounds often cause pain to streak across my face. It isnt a very pleasant feeling at all. I got used to just not touching my face at all and eating very carefully and drinking through a straw. My family knows not to touch my face either. Cold weather isnt a cake walk at all.

This is my story so far, I am in hope of getting some answers and relief soon and hopefully finding a good doctor.

Welcome to NeuroTalk. I hope you will find helpful info and I'm sure you will find caring people here. I hope you can find a way to see a neurologist soon and find some treatment that will help!

Welcome to NeuroTalk! :Wave-Hello:

I'm sorry for your pain. I have a dear friend with TN and MS and she takes Tegretol to control the pain. There must be something they can give you that won't cause an allergic reaction?

When will your insurance cover your pre-existing condition? Usually they have to cover it after one year? (I think that's the law?)

There are lots of wonderful people here and maybe somebody else will have some better ideas than mine. Take care and keep us posted. :hug:

Hi welcome. My Gp tried me on Lyrica for TN but I reacted to it so prescribed Tegratol as its different. Ask yours If Lyrica would be ok for you. Hope you get seen soon.xxxxxxxx

Hi SuperM. welcome to NeuroTalks t.n forum :hug:
I am sorry you are dealing with this on both side :(
Bi lat. T.N.
Can I ask what type of Doctor you are seeing? Do you see a neuro doc? or a pain Doc? There is nerve blocks and other options also...
There are many types of meds for controlling this Most of us have been on or are still on that merry-go-round of trying one or another or a combo of meds until what works is found.
I am allergic to anti seizure meds . So I know how it is .
Dont give up . I think what Wizabeth said is right about the time limit of not covering pre existing cond.
I too hope you find the right option and get control over this very soon.
sending low pain wishes and positive energy to you.
PEACE
BMW

Thanks for your reply. I work for the post office as a contracted employee and am only eligable for insurance through the union and they do not cover any pre existing condition at all..i asked, maybe because it is only a supplimental type insurance? Dont really know why, they only told me it wouldnt be covered and since it is my main medical issue i basically said no thanks for having to pay union dues just to get it.

Hello, thanks, I have only seen a few different regular docs, im calling around at the moment trying to find a neuro doc that actually deals with tn around my area, havent found one yet, the only one I was referred to i cant get in to see for months. And my regular doctor said she didnt want to risk putting me on anything until ive been to a neurologist. Which i just kind of gave her a blank look and left. She told me to go to the ER if i had another bad episode.

I work for the US post office as a contracted worker and can only get insurance through the union, and from what i was told they dont cover any pre existing at all, and it is only a very basic supplimental ins, so i dont know if thats why. She just told me what she read off the insurance packet and that it didnt cover anything pre existing at all.