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Trigeminal neuralgia

Has anyone ever drawn SS Disability with this condiscion.  I'v had it for 10 yrs.  Getting pretty tired of it.  I take 1600 mg. of tegretol a day.  It makes me very goofy.

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Ask you doctor to try other anti-epileptic drugs. Tegretol is known  as the 'dumb dumb" drug.

"Never let Yesterday use up too much of Tomorrow." "One man's trash is another man's treasure."

Marsha, I was just awarded s.s. disability for trigeminal neuralgia.  I told the judge that who would hire someone that I can't promise that I would be there everyday. 

The first doctor I went to was increasing the tegrotol too.  But, it takes a alot of wear on your body.  The doctor I go to now has me on 800mg along with other meds.  I have shaking in my hands and I am, as my son says, loopy.  The doctor said it's the tegrotol. 

Good luck with disability.  I ended up having to see a judge.  This disease is not well known.  I got a good attorney.  That helped alot. 

Marsha, I have had TN for 18 years, so i know how you feel. i am on disability now for six seven years.  they do have advocates to help you get on disability.  Fill out the forms, save copies  and keep jumping through the hoops and it will happen.  

i cant take anti epileptic drugs anymore, too many physcotic espisodes, with my life just passing me by,  I am one vicodin now.  Good luck

marsha as i may not be of much help, your situation sounds identical to mine, three years running; trileptal has increased to 1200mx6 hours. The second neurolist confirmed trigiminal neuralgia, I have been patient going throughtout radiation,( gamma knigh) . I live daily with the dizzyniss forgetting  depression, my family has been good, not talking about it because it hurts, I am working on ss, for the second time around because I tried to work for a while. but the unthinkable happend; I actually had 2 accidents no one was hurt, accept there was a fear that was  left in me,and always be with me, so what ever it takes. MY PRAYS ARE WITH YOU.  

so annoying that people just discard this condition and the effect it has on your life.it took me 3 years to get diagnosed and 5 days after i did i had to have an op, that's how severe it was for me. the op has failed and the pain is worse than before with on average 30 attacks a day.i am a mum of 2 and have another on the way. i also got 2 infections from having op.all the doc can say is take paracetamol....but does he really think i would have gone with op if tabs worked? i now an numb on the left side of my face and have lost my hearing in left ear.i can't do things with my kids or go out on family days as my attacks are so bad,i have to come home.i feel like a prisoner and just don't know what else i can try to get rid of this pain.

Hi..My name is Renee', I was diagnosed yesterday,,I have been suffering now for 3 yrs.. I believe longer than that. I was being treated for dental issues, ear infects, sinius and still no recovery, I saw Tn symptoms on internet and had them test me.. They are possitive I have it...The pain is so bad, I can't do anything. I am having attachs every few minutes....for the past 13 days...meds do not affect the pain..Had to quit my job as a PCT Dialysis Tech...can't work in this severe pain! I need advice on how you all are dealing with the pain and can you get social security/ dis with tn?

I have suffered from TN for around six years now although it was only diagnosed five years ago. I have been on 1800mg of Tegretol for those five years. Recently, the pain has became almost unbearable resulting in me being admitted to hospital on two occasions. The pain is gone meantime, but I am on Gabapentin, Tegretol, Baclofen and Amatryptiline. I am lucky (if you can call it that) that I have been left with no side effects from the medication except for a very mild 'crawling' sensation under the skin on the left side of my face where the pain would have been. I am retired on a pretty good pension so work is not an issue now and I manage to lead a fairly active life and remain positive about my long term outlook. While in hospital I saw a neurologist who examined me and confirmed the TN. He also told me that I am quite a bit away from surgery as the drugs appear to be working. I've documented my last year in the following blog for antone who's interested;


same thing happened with my mom she had the TN for 4 years before being diagnosed she got down to 70 pounds she is 5'7, they tried dental radio surgerys and all kind of crocks before we found a surgeon who knew what it was, she has had the brain surgery where they wrap the nerve with a sponge the relief lasted for 4 years then she had a surgery where the deaden the nerve to a certain extent that lasted for the last 6 years now its back with full force, hopefully the deadening the nerve surgery will work again and she will be back to her healthy self but disability says that she has to be out at least a year or she doesn't qualify how does that make any sense on an "uncurable" condition, its easier to get on mental health disability for depression than those that are really in pain and unable to function she is on at the moment 900mg of neurotin per day plus 80mg of percocet and 12 mg of hydromorphon and yet is still screaming in pain and the pain has only been back for a week! Trying to figure out how to get her help with her medical bills one surgery even after insurance paid their part was $75,000. She has paid out over $300 on prescriptions in two weeks, how are they supposed to survive even with insurance.

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