Hi all, does anyone have a sense of what percentage of folks with facial neuralgia have had to leave their career because of the pain? I’ve been caring for my in-laws for the past year, during which my TN has gotten worse, and I’ve developed GN. I am faced with having to go back to work, but I’m really terrified of the prospect. I have TN2, and my GN is constant, too, so I’m in pain all the time. My doctor told me people with TN really don’t qualify for disability (meaning he wouldn’t help me get it). How do you folks who work get through the days?
I dont! I lost eveerything! But treating the pain is important to get you back on your feet. My body started fighting with me to just take care of the pain, and at times I feel weaker for babying it, but It needed to be done. Fighting back ended up meaning actually treating the pain, and not pretending its not there.
I know, I feel we should get disability because it truly takes over your life. I dont know why my experience with doctors has been so aweful (as well as a high percentage of members here I have concluded) But I guess its just my desperation to get better, with no real actual remedy except in some cases that Im truly happy for the people that got some relief. Slowly my pain has been, still there, but at least I feel more myself, the more I treat it. I dont work, but its great to see the members that too, it takes a lot. Im looking for jobs though!
I have worked over 3 yrs with tn2. It was challenging as in it took all my energy just to go to work every day and keep my head up. Then I was injured at work and the stress of that added to my tn getting worse and spiraling, my pc dr. took me out of work for s/t disability. Still out and not sure how I can go back....I know it will just make me worse until I can't do anything. I have had to increase my meds continuously and at one point I cant function. Not sure how I will support myself...right now my plan is to live off my 401k if I can't get help. I'm only 50 but 3 yrs. ago I told my previous pc dr. that I would never live to 65 the way I was going. I meant it, but I think she thought I was trying go on disability. I knew what was going on and I wouldn't make it continuing the way it was - WAY too much stress! We have to learn to be kind to ourselves and watch out for us first. I understand what you are saying Minty.
my docs helped me get disability but I also have CMT so that may have helped with mine. You can go to the disability website and there is a list there about what are considered acceptable conditions for disability. If any of those are on your medical list then you can get a second opinion and get that doc to help you with your chart. Whatever you do do NOT try to do it by yourself please make sure you get a lawyer or some kind of rep.(voice of experience)
My TN has gotten to the point of just had Gamma Knife on one side and getting ready to have on other side. The pain is so bad on the remaining side that I only eat soft food.
good luck
jeritta
Man, this disease sucks!! Not that I want this, but if my face were melting off my head, at least people would get it. But really, I don’t want my face to melt off my head. Really.
Beth…sometimes my face feels like it’s melting off my face…would be nice if folks could see that!
I had to leave work 3 years ago Nov.2011.
The day I left I had no idea it would be my last…
I’m 42 yrs young and have filed for disability ( my disability insurance company through work made me file) just waiting to hear the results…
When my right side came out of an 8 year remission, I only missed a few days of work to start my med. I was able to work no problem for almost 2 years, until my left side came out of remission and didn’t respond to the meds ( any and all meds) it was labelled med resistant, progressive.
Having to fill out those forms was really difficult…
Many people have been approved for disability, it often takes longer as initially they are not approved. Since the day I dropped off my papers I haven’t thought about it since. I’ll have to face it once I receive a decision I guess…
((Hugs)) Mimi
I had to leave work in March of this year after fighting this "unknown" illness for 4 years. Doctors had just bounced me back and forth with no diagnosis until I gave up. Then in March I went to the ER with stroke symptoms but after the scan showed I was not having a stroke I was sent home. I've been through a billion tests and multiple meds since then with no relief. I wanted to return to work when school started in August but knew there was no way as my doctor kept telling me. I am in limbo since I filed FMLA they are keeping me as an employee but no pay or benefits. Thank God my husband has a good job! Times have still been tough.
I have struggled the most with my lose of independence. I can't drive due to the frequent onsets of pain and can't walk without a cane or walker because of loss of balance. I have wanted to try to apply for disability too but have been told by so many it is hard to get.
I'm sorry I'm not helping but I do understand. I'm right there with you!
(Hugs)OO
Wendy
We are about in the same boat Wendy. I am on FMLA (past my 90 days of protection) and unpaid and just lost my insurance so on top of no income (really no income as I am single) I now have to pay $636/mo for my insurance through COBRA. Since I have been w/my company for almost 30 yrs. they are paying half that amount for the next 6 months.
I do think I need to file for disability but am feeling overwhelmed about it. What I am trying to do to get ready is getting files from my doctors for my records, starting with my newest neuro. I found some inaccuracies in my files already so I will have my neuro correct it at my next visit.
For me,,it seems there are times when you feel good...times when the meds don't work so good and you don't feel good and don't feel like working... That makes for a real stinker of an existence. My thoughts are... the perfect answer is volunteer work. That would be the only thing that makes SENSE. But ....that is not the only thing that works for everyone.. I am not working currently..My part time job got to be too stressful. It wasn't the job itself.. it was the people and "their" problems that got to be too much.....My point being...even if you have a job..sometimes the people can stress you out toooo much....!!!!!! Stress is not good for us folks....So now I am thinking of what my next move will be.....????
Tis a tough road we go down. . . and there are no easy answers...That is for sure....I'm right right there with Ya too, Beth.
Min
hi beth. What is GN. i didnt leave work,i was signed off for 2 weeks,and i started meds at the beginning of the 2 weeks. Im not officially diagnosed as yet,sooooo it could be something else,who knows. Before i had meds,i couldnt get through many full days,more often than not,i would go home in the afternoon.Sometimes i was ok,but it was the winter months,and it played havoc for me. I got through my days by hoping that i was ok,i took anti inflammatories and paracetomal every 2 hours,however they didnt always work.I put IGLU on my gums,clove oil on my gums. In the end i did need the nortriptyline,i went to docs crying because i couldnt stand it anymore,and never wanted to leave my safe place (the bed).I would dread the day,but those meds at the time really did save my life.I cant add anymore than that ,but hope you find a way to get through the day.I find this site helps as we all understand one another,its a place i know i can grumble and everyone knows what your going through......
I hear you about the stress and other people's issues making it so much worse. I had my tn under control despite terrible work environment until I was bullied into a work injury and then hr telling w/c it was preexisting. She was reading my medical records (had access due to injury). My neuro had just ordered a back mri and she ASSUMED it was a back injury. It was none of her business and ordered to make sure I didn't have MS. I was treated like I was faking it and the stress threw my tn back into play. I work for a company with an excellent reputation for how they treat employees but what happened to me was so very wrong. I have lost thousands of dollars from this injury and will never recoup. I have back pain that has never subsided after 16 months and now a bulging disc in my neck from the physical therapy w/c made me go thru 3 times. Every time I went thru p/t my tn got worse. I went from a mere 400 mg daily gabapentin to now 2400 mg daily gabapentin + 60 mg Cymbalta and still waking in pain from one or the other. Costco.
Holy cow! It seems that a lot of us have left work but are afraid, unwilling, or unable to go on disability. This doesn’t give me much hope, folks! As I’ve been out of work for nearly a year, I dot even know if I’d qualify for disability. On my best day, I am almost pain free. On an average day (like today), I have low level pain, with jabs in my cheek bones and th roof of my mouth, a burning, boring pain that shoots down from my scalp into my forehead, and now constant ear pain (that’s the GN … geniculate neuralgia, Barbara). I just ran some errands, and between that, the medicine, and the pain, I’m pooped! I’m 48 and “should” be able to run errands without needing to lay down afterward. You know what? This thing we have really sucks.
Maybe there is a scientific name for it..but it seems it is exhausting in and of itself just dealing with the pain. IT wears a person out... then you add the side effects of the medss.....and trying to get ANYthing accomplished on SOME days--- it can just be near impossible......I've tried explaining this to "normal" people. and some just don't understand. Unfortunately:(
I left work in April due to a family emergency. Then this hit in august and there is no way I could work. Will have to go thru the gauntlet of meds but eventually have a 2nd MVD. MAYBE THEN I CAN THINK about work.
I have been on disability for 22 months now. My insurance company covers TN without question. Listen to your body, you know how far you can push. I wish you all the best.
I have been on disability for 22 months now. My insurance company covers TN without question. Listen to your body, you know how far you can push. I wish you all the best.
I'm guessing that is long term disability? I have UNUM and have paid thousands for my STD but they gave me a hard time and I only was paid 2.5 months and only after months of fighting for it. Now I would be on LTD but same ins. company. Not sure my neuro is going to be much help. My primary doc is good, she took me out 6months ago but under depression and anxiety which normally they pay everyone for. I have way too many things going on and now having terrible problems with neuropathy in my legs and arms. This morning I woke with tingling all over my body (is that even possible?).
Patty said:
I have been on disability for 22 months now. My insurance company covers TN without question. Listen to your body, you know how far you can push. I wish you all the best.
I was fired a little over a year ago. I'd been making mistakes because of the brain fog. I had only been with the company for 8 months so I guess that they figured I was too much trouble.
i hear what you say about feeling pooped. It is very tiring,i work an 8 till 5 day and drive alot to see residents/properties,and i can say driving is tiring,so the more i drive which is everyday ,the more fatiqued i am,and we all know what tiredness does to us. I done probably 40 miles today and my face hurt quite a bit today,well alot actually. enough to reduce me to tears,tears of pain,and of frustration. I sometimes lay down beth,you have to rest when you can,then you can face the next bit of the day. And yes it sucks
Beth said:
Holy cow! It seems that a lot of us have left work but are afraid, unwilling, or unable to go on disability. This doesn't give me much hope, folks! As I've been out of work for nearly a year, I dot even know if I'd qualify for disability. On my best day, I am almost pain free. On an average day (like today), I have low level pain, with jabs in my cheek bones and th roof of my mouth, a burning, boring pain that shoots down from my scalp into my forehead, and now constant ear pain (that's the GN ... geniculate neuralgia, Barbara). I just ran some errands, and between that, the medicine, and the pain, I'm pooped! I'm 48 and "should" be able to run errands without needing to lay down afterward. You know what? This thing we have really sucks.