Hi. I was came down with TN in 2007, was on Tegretol, Baclefin and Gabapentin. The medicine worked for a while, but pain always came back. Finally in 2010 had the MVD surgery. My pain was gone for 6 months, then came back. I went back on Tegretol. Over the last year, the pain has been so intense I've had to go to the emergency room several times. I've had about 3 months pain free until Tuesday when the pain came back worse than ever. I get such burning pain from my teeth to the top of my skull, I can't even open my eyes. Tears roll down my face, it lasts about 1 minute. Went to the chiropractor, that helped for a few days. Yesterday was my birthday and had another pain in the am, wen to the chiropractor, had to pull over on the way. I was supposed to go out to dinner with all my children, but just couldn't do it. I woke out of a sound sleep this morning with another terrible pain. I lost my job 3 weeks ago and have no insurance. I have several job interviews lined up for this next week, but how am I supposed to go when I can't function. I don't want to live like this anymore. I won't have a place to live if I don't find a job. I am taking Tegretol 1600mg a day plus Baclefin 3 times a day. I have 1 Hydrocodone left, but they don't do any good. I would love to hear from my fellow sufferers if they have any ideas. How are you supposed to make a living with this constant pain?
I’m so sorry that you’ve been struck down again. I am in the same financial boat, and do not see how my future is going to be either, but I live in Canada so my medical is mostly free at least. I wish I had something concrete to offer you this morning (you seem to to know the TN drill) but you have my deep empathy for your situation.
Hi Anita, welcome to LwTN and Happy Birthday!!
So sorry you weren’t able to celebrate… I’ve had to do the same over the years for different occasions. Not fun.
Last week I had my first and hopefully only mvd. The day before in discussion with my neurosurgeon, he mentioned something…he said most people suffering with TN can’t work.
I have been off work since Nov.2011. I am hoping to return this Fall, my goal.
I was able to work and have TN for years before my TN got worse, leading to this mvd.
Is there any chance you can file for Disability? Or perhaps find work that you can do from home? I don’t know what you do for work, but maybe there are more flexible options available to you?
How long have you been seeing the Chiro? Is it NUCCA chiro? I had a consult a few weeks before my surgery it sounded like a good fit for me and something I’ll look into after I heal from this.
You also might want to consider a 3rd med, I was on Tegretol, Baclofen & Dilantin.
Hope you get relief soon, one day at a time…positive vibes being sent your way!
Mimi
Thank you all for the well wishes. I suppose I could try for disability but it would take so long to get it that I wouldn't be able to keep my house or my car. I would love to work from home but all I can find on the internet are just scams. They want you to pay money up front (which I don't have). I was a lumber/building material buyer for 16 years, but my place of business closed a few months after my surgery. I was able to find a job cashiering at a convenience store & Internet sweepstakes café. I could work there even when my pain was bad - the customers got to know when I couldn't talk that I was having a bad day and they were great with me. However, the North Carolina government decided to ban Internet Sweepstakes. My employers decided not to keep the convenience store open either because it didn't generate enough income. My neurosurgeon is 3 hours away and the last time I called him, he told me he couldn't help me anymore and to see a neurologist close to home. My 1st neurologist moved away. On one of my visits to the ER, they helped me make an appointment to a neurologist associated with the hospital. I went and he gave me two steroid shots in the back of my head and ordered another MRI. After a week, I finally called to find out the results - he said that I had no new "lesions". I have called for another appointment and it will be several months before I can get in. I feel like no one cares except my chiropractor. He has been wonderful. I have been seeing him since before I had TN. One day, my boyfriend had to drive me because I was in such pain - the Dr. saw out the window and came to the car to help me in. I never have an appointment, I just show up, he takes one look at me and takes me right in. I called one day because I couldn't remember if he closed at 11 or 12 o'clock that day. He answered the phone (receptionist was out) I told him that I needed to see him. He said he closed at 12. I got there about 11:45. He said "I thought your clock must be different than mine when you didn't show up right away, but I wasn't leaving here until you came". That's the kind of people that should be Doctors. Someone who really cares. If any of you know of internet work from home that is not a scam - I would love to hear about it! Thanks for listening! :)