Trigeminal Neuralgia Support Group

Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

0 Online
0 Online

Social Security Disability

I won my SSD case having Trigeminal Neuralgia. It was not easy but after 3 years of fighting I won.

This is huge for people with TN because it is not well known for SSD.

I would be happy to share my experience with anyone who has questions

Replies

deleted_user
deleted_user

Congratulations!!!

I do have questions. How much medicine are you on? Are you still in pain? Did you have the surgery?

I am on 600 mg of tegretol and still have pain. If I could lay down right now with some ice it would help.

Thanks!
Sandy
deleted_user
deleted_user

That is great! I got mine last year. Each state approves ssd. Each state gets to make choices as to what is covered. I know that the more they learn about us the better it will be for all of us to get coverage.
Be sure to treat yourself to something!!! I got a nintendo DS that I playing puzzle and boardgames on. This really helps me to keep my mind off of pain! I also have books on tape because my side effects do not let me focus good enough to read any more. Find something like that for yourself. It can make a difference ! Thanks for sharing your great news!
Julie
Sasha1
Sasha1

Im so happy for you. Congratulations. In order to receive SSD do you have to be unemployed? :)
deleted_user
deleted_user

I worked a couple of jobs but could no longer handle it with the medication I was taking. I was unemployed for most of the time. Disability means you can no longer work
Sasha1
Sasha1

That's what I thought. Thanks
deleted_user
deleted_user

I have just been diagnosed and am only 2 weeks into this. Reading this scares me to pieces! I am happy for you. That you got some help, but the thought that this could end up disabling me is beyond scary! If you don't mind me asking....how long have you had TN, did meds not work for you, and did you go the surgery rout and still not see relief?

My best wishes to you.
Carrie
deleted_user
deleted_user

I finally had to get an attorney. Was turn down twice.They had no ideal what TN was. As it turn out the attorney did't either, but with my back problems I had a better chance to get it. He thinks we wouldn't even have to go to court. This I have to give up 25% of my money. At this point I have to have help with my doctor bills. Next month it well be a year I've be off work, TN first notice in April 2010 been up to 1200mg a day of tegretol, but down to 600mg and 60mg of baclofen. Can't take meds for my back because of the extra side effects. Had to chose which pain was worst.
deleted_user
deleted_user

I got my SSI about a yr after I learned about the TN.Sept will be 2 yrs since docs told me about the TN and started me on Tregretol.Been up to 1200 mg a day but now down to 600mg(sometime take a extra pill when its real bad)Also when the pain is so bad I can not stand it-I go to ER and get a steriod shot.But can only take those shots like every 2 months but man it really kicks the TN out completly -but not always-lol.)I have been afraid of the surgery as so many say it comes back in a few yrs.My SSI is a very low check but it also lets me have medicaide which pays for docs visits and test plus 3 prscriptions a month.Pray you have a pain free day today.Danny
deleted_user
deleted_user

I have been suffering from TN for over 3 yrs now and have just got diagnosed. I have already had my ssi hearing. The judge sent me to one of there doctors. They confirmed my condition. What gets me is instead of making a decission they are scheduling another hearing. Is that a good thing?
pitmum
pitmum

I am in appeals now for my SSD. Congrats on getting yours! Makes me very hopeful.
deleted_user
deleted_user

I have SSDI right now. They found me disabled under Muscular Dystrophy because of my feet, ankles and legs. I was also told there were a few other things added but they never told me what it was exactly. I filed for SSDI back in July 2005 and I finally received it in Jan 2010...long fight. But they sent me a ticket to work, which I have no idea why because I can't even get out of bed hardly. Then we I get a TN or ATN oh my gosh how in the heck can I work? They are NUTS!
deleted_user
deleted_user

Congratulations! I am so happy for you!!! Mine is still in review and I do suspect that they will deny me the first time, I was told they usually do! Because you visually can't see what this disease does to us people whether it's husbands, wives, family or friends don't understand why we can't work. They don't understand how exhausting it is just fighting the pain and then throw bad side effects on top of that. Again, well deserved and praise God. Hopefully, this will eleviate some of your stress. Take Care!
Lynn
deleted_user
deleted_user

I am having a hard time with work temporary disability and am not looking forward to fighting the govt as well. Any tips you could give us would be greatly appreciated
deleted_user
deleted_user

That is awsome, I've been living with it for over 3yrs now and just recently got diagnosed. I startedd persuing SSD 21/2 yrs ago. I have already had my hearing, they sent me to a doctor for the 2nd time, now I am waiting on my second hearing. Your story gives me hope. Thank you for sharing your story with me.
deleted_user
deleted_user

I finaly have a court date jan, 3. But they are still with my back. My neurologist wont sign off on the disabily. I know the lawers well do all they can they want their money. Been off work for a year and four months now. You would thank the Dr. would know I still can't work.