trigeminal neuralgia

Hey Katie..I'm from Devon, soon to be moving back to Cornwall!

Totally with you on joining this. I hope your relief comes swiftly. The Teg would make me lose focus and become confused or cloudy also . Hopefully it works for you I currently take Gabapentin . We aren't alone , no worries we got this . We ALL got this'

Hi Katie, I am quite a private person and do not advertise my condition and I have never thought about joining or replying to any forums this is the first one I found on google, until my experience 3 weeks ago

Its Kev from Cov, I was diagnosed about 2 years ago, although I think I had it longer than that as I have had a lot of dental work. I believe that I have had dental work that was not actually required.

Dentist do not understand or recognize this condition, shame on them

Medication: I am currently on 1500mg of tegretol and 600mg of Neurontin and I am currently under control, IE no episodes

However, if under control is not exercising or doing day to day activities for fear of an episode, I read one of your replies and I also have found as soon as I sit down in the evening I tend to fall asleep, meds!

When diagnosed from a specialist, they recommended a MRI, however my doctor admitted that he did not know what to look for, a bit of a waste of time

Doctors, well unsure how you have found them, they don’t seem to have any understanding, either googling or pulling out their med books to find out about the condition

I visited the doctor 3 weeks ago with a dull ache along my right jaw, feeling it was getting me down, and could he help, well obnoxious to say the least, he prescribed me codeine, I tried to explain that normal pain killers don’t help however he was insistent that these would ease the pain. 2 ½ days later I was inconsolable and visited A&E where there prescribed me Neurontin.

I have never experienced anything like this before, I don’t recall much about it but a firework display going off in my head continually was the only thought I could muster.

Normally my pain varies a dull ache to a small electric shock, then the major pain which I can describe as an electric shock going through my jaw, through my eye and into my brain, although I don’t think the last is actually descriptive enough, I first described it as a hot knitting needle being pushed through my jaw, eyeball and brain, horrific but I don’t have to tell you or any of the other suffers

I have just seen a neuro surgeon and basically, I inferred from him that unless I was laid up in bed inactive and had tried every drug on the market that he would not do anything, however I have another MRI this week with a neuro surgeon looking at the results, so it will be interesting to see what the results show.

Watch this space

Kev

So sad that you are so young, but there are choices in treatment. Not everything works for everyone. Don’t give up,besides drugs acupuncture worked for a while. Look into pain management doctors might help. Keep trying . Good Luck