I kept thinking this had to be something other than TN. When having all the test done (CT scans &MRI's) I was really hoping they would find something fixable, nothing serious just something that could explain this horrible pain. It first started in July and when I read about people that have been dealing with this for years I think how in the world could they survive. I have been on so many medicines and walk around in a fog most of the time. I am up to 1800 mg per day of gabapentin & 400 mg of tegretol. I told the nuero that I was tired most of the time & he said he didn't think it was the medicine. I can say the episodes are not as often & not as severe but I would love to stop taking all the drugs. I have no energy & when I get home from work I am done. I work with the public and there have been times when I was in so much pain that talking made my face hurt worse. I asked my Doctor if he thought this would one day just disappear & he said yes but from reading all the post here that seems unlikely. He says my tn is atypical because when the pain comes on, it is constant until I take everything in my medicine cabinet & knock myself out. There have been times that I was truly afraid of overdosing & then times that I didn't care if I did. This is the worse pain in the world & I am so sorry that people have had to deal with this for years. I find it hard to believe that there are cures for so many things & nothing for this. Is there anyone out there that really got over this?
Awe im def feeling your pain tonight actually crying and sad I have to be in pain for Christmas im sad for everyone that is in pain as well! I cant even work right now. Its definately not fair! My moms friend has tn1 pain and hers goes away mines a 24/7 pain and it never goes away hang in there we are here with u! If u ever need to talk im here my name is amanda
1. Fire your doctor-- TN does NOT disapear - can go into remission
2. Get a new doctor ---that has TN patients
3. YES these meds are why you are sleepy most likely
4. Once you find a competent doctor you will be closer to relief - look above under "doctors" tab - maybe somebody near you
5. Ask your regular doctor - or if you have to - your current incompetent neuro - for IMMEDIATE prescription for Lidocaine Patches - put them on your face for relief - you do not have to live in so much pain
6. The drugs were so bad with me - I had an operation - TN gone about 1 year now --- could come back in 10 years, but I'm happy and pain free for now
LEARN and READ all you can here on the face pain tab above
and on the website of TN Association - Get the book - "Striking Back" by Dr. Ken Casey -
Keep posting = we are here almost 24/7 : )
I agree with KC! I saw my nurse practitioner and SHE diagnosed and treated me! The only reason I am going to neuro in January is because I have had some serious breakthrough lately and they want me to go. They took me as far as they could there and want me to go to the neuro.