has anyone ever been able to get put on disability because of their tn, I have been battling this for a,most 3 years and this has been the worst year I am a teacher and I am finding it hard to go to work when it flares up! I cant afford/we as a family ca not afford for me to quit without getting some form of income since my tn is triggered by talking im not sure what else I could do I love my job and dont want to give up but i am feeling helpless i am probably going to have to go back to dr and look at other options I had been pain free since april and was not taking meds I guess I dont completely understand this disorder how can it go away and then come back ten times worse???? and the meds what r they doing to our bodies and it seems as if the stop working the worse the flare up is??? Any suggestions or advice would be helpful!!!
Hu Ayre, I understand your feelings and questions. Living with TN sucks.
I know some people have gone on disability, although I don’t know the process or what’s involved. Do you have short term or long term disability through your work benefits?
I can only share my own experiences as to your other questions, comments. I initially had TN for like 7-9 mths, then I was able to wean off the meds and be TN free for 8 years! It came back 2 yrs ago, and when I saw my neurologist he explained that in his experience, patients who’s TN returns after a period of remission their course of TN gets worse. Worse meaning it gets harder to control the pain and med dosages increase or you have to end up taking more meds in combination with each other. Or resort to surgical procedures.
I wish I knew how I was able to go 8 yrs without TN pain, it continues to boggle my mind and makes me try and remember if there was sonething I did or didn’t do that helped. It frustrates me to no end, as my neuro was right in my case, it has gotten worse and now I’m needing to add more meds to the mix and look into surgery! As you said what are these meds doing to our bodies? Exactly why I’m looking into MVD now…
All this to say I think the best any of us can do is find a good doctor/and or Neurologist that is willing to work with us for pain control and help us find the best options for us individually. We need supportive families and friends and if course this forum of people who know what we’re going through, it helps.
I am currently off of work ( since Nov2011) on long term disability through my work benefits. I miss working very much, and am hoping that I can go back! I refuse to think at 40 yrs young that this is the rest of my life.
Do your research, google online find out through your doctors what your options are but most of all have hope that you will get through this and be better. ( I’m trying very hard to think the same way)
Some days are easier than others, ((((( hugs ))))) Mimi
I am currently on disability for the TN , I have it bi-laterally and a-typical symptoms. None of the drugs has left me feeling good, I am one of those people that doesnt react well to any medications and usually has every side effect possible, so dont lose hope because I said that, its just me and I am weird that way.
I discussed all the symptoms with my Dr. and she was the one who said I couldnt work. I am an insurance adjuster who drives over 100 miles a day, so I cant be behind the wheel on the medications, it would be dangerous. I am lucky working for an insurance company, I have excellent benefits, they understand the risk and liability of this, and we have a great support group at our home office.
My advise would be to discuss with someone who handles your insurance at your job, and if possible if you have a nurse to speak to , that conversation would have to be private by law and they could not tell your coworkers. If not, you may have a hotline you can call to discuss this with your insurance company, but you need to find out who your short or long term disability carrier is. I was lucky that the woman I spoke to had another client out for the same thing, so they had some sort of knowledge about it. Please message me and I can walk you through some of the steps.
As for getting better, I feel better on the meds I am on and am scheduled for surgery in October. I am actually looking forward to having it and hoping it works. If I can get med free and pain free then I can work again. Dont give up, there is an answer and treatments that will work for you.
Wendy
search the word disability here - there is a section on it here somewhere!!! If you can't find it that way - it's burried somewhere on the Face Pain Info tab above - extensive info.
What meds are u on Wendy and what surgery are you having? I dont have insurance through my work I am on my husbands insurance I am not sure if we have that options but is there not some kind of state disability not throw your insurance this is all new to me but I know a lady that is on some form for her bi polar and i dont think she has ever worked maybe it is through welfare/medicare which we do not qualify for but we r use to my income and really would have give up things and with is economy we would struggle i am a teacher and when my nerve flares ups o bad it takes everything I have to be there my never is triggered by eating brushing my teeth and talking well its is kind of hard to teach if I cant talk ...lol thank you so much for your help i will have my husband look into our insurance
crashgirl said:
I am currently on disability for the TN , I have it bi-laterally and a-typical symptoms. None of the drugs has left me feeling good, I am one of those people that doesnt react well to any medications and usually has every side effect possible, so dont lose hope because I said that, its just me and I am weird that way.
I discussed all the symptoms with my Dr. and she was the one who said I couldnt work. I am an insurance adjuster who drives over 100 miles a day, so I cant be behind the wheel on the medications, it would be dangerous. I am lucky working for an insurance company, I have excellent benefits, they understand the risk and liability of this, and we have a great support group at our home office.
My advise would be to discuss with someone who handles your insurance at your job, and if possible if you have a nurse to speak to , that conversation would have to be private by law and they could not tell your coworkers. If not, you may have a hotline you can call to discuss this with your insurance company, but you need to find out who your short or long term disability carrier is. I was lucky that the woman I spoke to had another client out for the same thing, so they had some sort of knowledge about it. Please message me and I can walk you through some of the steps.
As for getting better, I feel better on the meds I am on and am scheduled for surgery in October. I am actually looking forward to having it and hoping it works. If I can get med free and pain free then I can work again. Dont give up, there is an answer and treatments that will work for you.
Wendy
thank you it is hard to understand why it goes away and comes back with all this technology why r dr not trying to find an answer to this!!!!!!!!!
Mimi said:
Hu Ayre, I understand your feelings and questions. Living with TN sucks.
I know some people have gone on disability, although I don't know the process or what's involved. Do you have short term or long term disability through your work benefits?
I can only share my own experiences as to your other questions, comments. I initially had TN for like 7-9 mths, then I was able to wean off the meds and be TN free for 8 years! It came back 2 yrs ago, and when I saw my neurologist he explained that in his experience, patients who's TN returns after a period of remission their course of TN gets worse. Worse meaning it gets harder to control the pain and med dosages increase or you have to end up taking more meds in combination with each other. Or resort to surgical procedures.
I wish I knew how I was able to go 8 yrs without TN pain, it continues to boggle my mind and makes me try and remember if there was sonething I did or didn't do that helped. It frustrates me to no end, as my neuro was right in my case, it has gotten worse and now I'm needing to add more meds to the mix and look into surgery! As you said what are these meds doing to our bodies? Exactly why I'm looking into MVD now....
All this to say I think the best any of us can do is find a good doctor/and or Neurologist that is willing to work with us for pain control and help us find the best options for us individually. We need supportive families and friends and if course this forum of people who know what we're going through, it helps.
I am currently off of work ( since Nov2011) on long term disability through my work benefits. I miss working very much, and am hoping that I can go back! I refuse to think at 40 yrs young that this is the rest of my life.
Do your research, google online find out through your doctors what your options are but most of all have hope that you will get through this and be better. ( I'm trying very hard to think the same way)
Some days are easier than others, ((((( hugs ))))) Mimi
I am on some weird drugs for this, I take Celexia the anti-depressant, and that helps the boring ear pain and the pain that feels like there is an ice pick in my ear. I also take fiorinal with codeine, it is a migraine drug, but it helps with the pain in my teeth and the headaches I am getting for this. I dont get the lightning stikes very often since I had the glycerine rhizotomy done , but when I do , they hit for about 5 minutes and bring me to my knees, but I know they pass pretty quickly. I couldnt take any of the anti-seizure drugs like Lyrica or Tegretol, I had too many side effects.
I am having the MVD surgery in october for my right side, I also have this on the left, but its not as bad.
Your regular insurance such as your husbands would not cover disability, that would only be for treatment of this, you should have some kind of disability from where you work , if not then you would have to look into a state run program. I can tell you the state run kind will take quite some time to get approved.
Wendy
I kind of figured as much for disability and i doubt i would get approved through the state:( but i will look in to it i am on the generic for trileptal i started taking it 3 times a day i am going to give it 3 weeks and if it is not getting better i am going back to the dr still need to find good neurologist my dr also gave me celexia but it makes me so jitter when i take it with my other meds I use to just get pain in the lower right jaw but this time i have been getting an ache pain all the way to my temple mainly when i try to eat..i have never heard of fiorinal with codeine or glycerine rhizotomy what is it? How does a dr know u r a candidate for mvd???? Thank you for sharing your knowledge I hope u dont mind of the questions!!!!
Andria
I get the jitters on celexia as well which is really fun, because I am hyperactive as well, yay me! But it does let me function without that boring ear pain, which was really getting me down. Fiorinal with codeine is old school migraine medicine, it has caffeine in it to help open up the arteries , which ristrict causing the migraines. I have been taking it close to 30 years, I never switched to the newer meds because it works for me. As for the glycerine rhizotomy, they inject glycerine into the nerve to disable it and hopefully stop the pain. It did stop the traditional tn1 symptoms but not the atypical, burning ear, or the teeth hurting. My teeth have not stopped hurting since I first got this 6 months ago, I have yet to find something that actually makes them stop for an entire day. My neurosurgeon did find a compression on both sides, with the right side being much worse. So that helped me get the ok to go ahead with the MVD.
If you check the face pain info tab, Red goes into great detail on what all the proceedures are for this, its a very good read. It also has links for insurance questions as well. We are each different in this and how we respond, so what may be good for one, may not help another, but there is a lot of good info there.
Most of the diagnosis on this is mainly the doctor talking to you and asking a lot of questions, just because they cant see the compression,, doesnt mean you arent a candidate, best advise i can give is find a good neurologist that is familiar with this disorder. I dont mind helping at all, I am still learning alot on here as well
Wendy
:)