Hi…I first got this in Aug. of 2009…have been taking tegretol twice a day since then. Last month out of the blue this has gotten so bad I can’t talk or eat. Does anybody know why it has done this and will it maybe go back to the pills helping? I can’t take this pain…I can’t eat…will it ever get better to the point I can eat again…thanks
As you well know saying that the pain of TN can be brutal is an understatement. I just entered this community tonight to share my experience. I started a discussion on viruses as a possible cause. In case you pursue this avenue with a neurologist, be advised that my neurologist told me I would probably get worse when the antiviral treatment was started and gave me a steroid shot at that time. He was correct. My symptoms got worse before I slowly started to improve. Within 6 weeks I was pain free for well over a year.
WOW.Help me understand this. In Sept. I got this really weird rash on my arm between my elbow and wrist on the outside of my arm. I went to my family doctor and he really did not know what it was for sure so he gave me an anti fungal cream. It cleared up in a few days. About a week later this TN pain tripled to the point nothing helps and I have horrendous pain if I try to eat or talk. Could there be a relationship??? How can I fix it??? I am going to Vanderbilt to a Neuro surgeon in Jan. and I really want to avoid surgery if possible…but I surely cannot live like this. It has been a year and a hald since I have this but the Tegretol was really helping…now for the last month and a half, nothing helps. I have got to get where I can eat more than soup…and talk!!! If the rash caused this, what can I do now???/ Thanks
Hi Mary, during the past 3 years with my TN, I had a few episodes where it was so bad that I couldn’t speak or open my mouth to eat. It would only last at that intensity for about 3 days, & then seemed to loosen it’s grip, & it would get better. The correlation with me was STRESS. My son was graduating from high school & we were having a graduation party at our home for one episode. I was so drugged at his graduation that I slept through it. Keeping my stress levels as low as possible seemed to be the key for me in keeping the attacks bearable. I finally had the MVD surgery on Nov. 17, 2010, & have been shock free since waking up from surgery. I spent the last 6 months preceding surgery taking the highest dose of Trileptal my neurologist would allow…was a walking zombie & could no longer drive. When it came to the point where I had very little quality of life left, it made the decision to have the MVD very easy.
Wishing you less painful days…Judy
Mary,
I had TN for 3 l/2 yrs with pain almost controlled with a small amount of medicine. Then on Oct 20, 2008, it suddenly became uncontrollable. And that was one of the problems I had. I couldn’t open my mouth, eat, drink or brush my teeth without severe pain. Actually I hurt even sitting totally still. That lasted most of the day. I generally had about 6 hrs between about 10:00 AM and 4:00 PM where I could somewhat manage. I had an MVD which helped me tremendously. Although I was never pain free, my medicines controlled most of my pain for about 13 mths. Since then I’ve been having increasing pain and trying different meds. This last one worked well for awhile but my pain is increasing again. Just keep trying more medicines. You may find a good combination. Just let your doctor know. One person asked a question about being a pest to her doctor. I said be a pest. My neuro was very good and responded within an hour with a new medicine to try. Don’t give up. It may be as simple as increasing the tegretol and you may not have to try a new medicine. Are you seeing a neurologist and have you had an MRI?
Liz
Hi am so sorry darling ,
will i was hurting so bad last month it was gone for 1 yr
now the elec shock killing me ,i didnt see the doc but i have no med ,
my doc wouldn’t give me med he know i have TN he did’nt care
i move away i have to go to the ER to get med thanks to Pat she online here she so sweet
she told me go see the ER i did now am taking diff med i feel better for 4 days i had a new doc now she gave me the same med called gabapentin then later i started hurting not much but she gave med tegretol and gabapentin i feel ok but it took my beer away lol!!!