I am glad that you have found medication that works for you and it sounds like you are being well taken care of. Funny that you mention being pain free on warm and sunny days--I have noticed my pain is always worse on stormy days. It does sound like you have Type 1 and that is why I am curious about the surgery. Please look up that video that I mentioned. You are in the UK? I am in Canada and the video is by a doctor in the States. Dr. Casey is a leader in TN research and his views are not shared by all. He states that Type 1 TN if operated on within the first few years have an 80 to 90% success rate.
Many doctor's are not up to par on the latest research that is being done and I am not sure how your medical systems favours in the UK. TN can be progressive and many people have a difficult time controlling the pain as time goes on. Just watch the video.
I have Type 2 Bilateral TN so my experience is very different from yours. It is important to have MS ruled out first which your Dr. is doing. You are also fortunate to know someone that is going through the same thing.
I am going to send you a private message with some more info.
Quote:
Originally Posted by Waterfin
Thanks for your reply. I've only developed TN since Jan this year. I think it's typical TN. Pains when unmediated would be severe and sustained for a few minutes at a yield, like labour pains. I couldn't eat or drink hot things, brushing my teeth or even breathing was awful.
Happily, although carbamazepine made me ill, I'm tolerating gabapentin pretty well and am 95%pain free. Completely pain free on warm, sunny days.
I'm happy it shows compression as it's good to have an official cause for the pain.
I have a good friend who developed TN a few months before I did and I've followed her through the route of being diagnosed by the same gp, being referred to the same neurologist at the local hospital, being sent for an mri at Walton, then being referred to Eldridge upon the mri results.
She went expecting to be a good candidate for surgery. Younger than 40. Eldridge dashed her hopes straight away. She was too young for surgery. He wouldn't consider it until she's exhausted all medication first. He said time from him seeing someone initially to then operating was about 7 years. I will see him in the next couple of months and expect to be told the same.
I have a small twitch from time to time, but I think that's a side effect of the medication, not any neurological symptoms. I also have memory issues, but again I think that's the meds.
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