NeuroTalk Support Groups - 20 years and finally maybe a diagnosis

For nearly 20 years I have periodically gotten stabbing icepick pains through the top of my head on the right side. Finally after all that and gods know how many doc visits they have a tentative diag of TN.

I'm not sure what exactly is ahead of me now... I've read up on it, know what they do and don't do... I should have the MRI for it in the next couple of weeks to confirm it I guess.

I guess what I wanted to do was put the history down on it and get a sanity check on if we're finally on the right path here or not.

Around 20 years ago I was serving in the army and develped some strange allergies. I would go into work in the morning completely normal and 20 to 30 mins later I would be swollen up on the right side of my face. Always the right side. My eye would swell shut there would be swelling both above and below the eye. My lip on the right side only would swell up. It was like a line was drawn down the center of my face. Needless to say it really stumped them then. About 6 months after that started I had a really bad attack of the swelling and I got the first of the headaches. Icepick spikes every 5 to 30 seconds... little to no pain in between spikes but the spikes themselves were 11s on a scale of 1 to 10. I went to the doctor again at that point and got some ergotomine (which did nada) and the attack continued on for some 17 straight days and then just stopped.

I would continue to get these intermittantly and usually for only a few days for several years... then in 1997 at the age of 35, I managed to catch chickenpox. 4 days after the start of that the worst headache episode I have ever had started. It lasted 22 days in all. My family doctor referred me to a neurologist who put me on depakote which seemed to make it go away... and in fact it stayed away for about 4 years.

Since then I would feel it teasing (for lack of better word... it is ALWAYS in the exact same spot and there is a feeling between attacks that isn't exactly pain ... can't really describe it... ) I would get a few stabs a day and eventually go back to doc and get on a 3 month course of depakote again.

The depakote is not nearly as effective now as it was 10 years ago though and I don't like some of the other side effects so I had been working with the family doc on getting them under control and we finally hit upon this as a probably diagnosis. We're treating it with amitryptilene right now with modest success... I am still getting stabs, but not quite as often and the teasing seems a bit less.

I guess I am concerned because the first events seems brought about by the kinda weird allergic reactions I would get (swelling on one side only of the face... right side btw... same as the pain) and that the worst one seemed to be tied to varicella virus which can cause a related problem but usually only when it's expressed as shingles and not a primary chicken pox infection.

I mostly just want to feel I am on the right course or not I guess. And if I'm on the right path here what should I really expect?

Thanks in advance