I am going to try and work 3 more weeks and file for disability. I have been dealing with TN for 4 years and it has taken its toll on me. I am not able to work anymore. Every morning I wake up in tears wondering how am I going to make it through the day. I have tried many different combos of medicine, Upper cervical care chiro, accupinture, meditation and exercised with out much relief. The last time I went to see the doctor I told him I was not able to work. He responded" I don't want to put you on disability it is too much paperwork". Really!! This is the second neuro I have been to and many other doctors. I also have peripheral neuropathy in my feet and a nerve entrapment in my elbow. I have had tests to verify both of the conditions I have had 2 MRI for my TN that does not show anything. I guess I am afraid if they send the disability papers to my doctor he won't say I am unable to work. I hate to start over with a new doctor. I am so frustrated. It is not like I haven't worked my whole life. I am going to be 61 this year and have been working full time since I was 17. I just can't do it anymore. Sorry I really needed to vent!
Lee, vent away. That is what we are here for. We are the family who listen and understand. So many of us share your feelings about having to work and cope with all the everyday stuff of life. If it were easy we wouldn’t need a support group. I have you in my thoughts for a satisfactory outcome.
((((Lee)))) I sometimes wonder with Doctors I really do!!! TOO MUCH PAPERWORK!!!!! Some Doctors are wonderful ...and then there are others. I feel you should be congratulated for managing to work for as long as you have done, considering how debillitating TN can be when it is dancing its evil path! Try speaking to the Doctors receptionist explaining you need the paperwork filling out and ask her advice. Finally, venting is something I have hidden for years maybe we all need a Public Venting Day so the pain free can get a taste of what we all go through.
Thanks for your words of encouragement. I don't know what I would do sometimes if I didn't have this website. It has helped me more than I can say. It is so nice to be able to say what you feel and know people understand.
Lee
Hi there - I understand!!
- I thought at one point I would have to stop working.
I flew to Dr. Casey in Trenton Michigan - changed my life with MVD.
He consults in person and / or by email!!
Are you a candidate for MVD? Have you ever asked a neurosurgeon about this?
Can you get a special MRI called Fiesta? Bigger chance of showing compression.
Have you tried Lidociane Face Patches? Can really help many.
My dad has neuropathy in his feet -- he didn't get it till retired.
I feel for you....
Keep posting!
I am really afraid of MVD. I have read many things about it and I keep thinking if I wait a litter longer they will come up with something not so invasive. Some of the stories I have read on this site about MVD really scare me. What scares me the most is many times it doesn't last. I know this is strange but my mom had brain surgery many years ago at the mayo clinic and the outcome was not good. She was never the same. It wasn't even for the same condition but I have so many memories of the outcome. It amazes me I would post this online it is something not too many people know about me and something I never talk about. Funny how sometimes on this site you can say things you would never say to anyone else.
I do have a compound cream for my face the neuro gave me but my insurance is no longer going to pay for it. I still have 2 bottles left. I kept getting in refilled even when I wasn't out because I had a feeling they were going to stop covering it.
My neur said they don't like to do an MVD unless they see something on the MRI. I have never heard of a Fiesta MRI.
The one good thing is even though I have neuropathy in both feet the pain doesn't seem near as bad as the pain in my head. The pain from the TN tops any pain I can ever describe. Thanks so much for your information. I can't tell you what it means to me
Kc Dancer Kc said:
Hi there - I understand!!
- I thought at one point I would have to stop working.
I flew to Dr. Casey in Trenton Michigan - changed my life with MVD.
He consults in person and / or by email!!
Are you a candidate for MVD? Have you ever asked a neurosurgeon about this?
Can you get a special MRI called Fiesta? Bigger chance of showing compression.
Have you tried Lidociane Face Patches? Can really help many.
My dad has neuropathy in his feet -- he didn't get it till retired.
I feel for you....
Keep posting!
I found many success stories for you!
I feel your pain Lee and have been there. I quit working just over a year ago at 50 as I just couldn't do it anymore working on a computer with the face, eye, and head pain. Everyday seemed like a month of pain, every week seemed like a year and the pain kept getting worse each month. I'm still fighting for disability and hoping for the best. I am forced to keep switching doctors. I had one that understood and was starting the paperwork for me, but then he got sick himself and went on medical leave. His replacement did not feel the same, though I was placed on some new meds which have helped a lot. Can I ask if you have type I or type II TN? I'm currently on Topirimate which is really helping at least half of the time, and at least with the worst of the pain. No more pain where I would rather be dead. I know it's exhausting just trying to find a new doctor, but perhaps you can once you quit working. I highly suggest purchasing Jonathan Ginsberg's "Disability Answer Guide" prior to filing. I wish I had. (I have no connection or association with him or his organization.)
Wishing you the best Lee, hang in there. As for myself, I find that if I can just lay down for awhile around noon or so that it helps immensely most days.
Hello
I can relate to you. I am in the same boat. I am working two part time jobs and wondering if I would be better off on disability myself. What has helped me is compartmentalizing my work and taking week by week. TN is a disease that requires constant management so please put self-care first so you can make it a little further.
Hi Lee,
I understand. I am 62. I have a 15+ year history of chronic pain all on the right side all over my body. I am also a breast cancer survivor. Last October I was diagnosed with TN and also hemifacial neuralgia. While in the hospital I was also told I had 3 strokes in the past. I can recall having them. Because I have low blood pressure, tryglycerides, cholesterol, blood sugars and normal weight, no one checked for strokes. I have been working part-time since the first of the year. I am a professor and psychologist. I can barely talk so am doing online classes. My insurance company just denied my part-time short-term disability. I have 18 diagnoses including the TN. My main neurologist wants me to be off full-time. I hate stop, but I have too. I am scheduled for surgery with Dr. Michael Lim (MVD) at Johns Hopkins on March 21. I just need to stop working because of all the other stuff including this. I just know it is time. However, it is hard to let it go.
I wish you the best.
Linda
Wishing you all the best Linda. It's a lot harder when you love your work as I did. Please keep us all posted on your surgery, I know it will go well. I've heard that name before and understand he is very very good.
Linda
Please keep us posted about the surgery. I really would like to hear how it goes and what is involved. I know it is time for me to consider having it done and I have a daughter lives very close to John Hopkins.