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Old 11-20-2007, 07:51 PM   #3
kerenkaye kerenkaye is offline
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Join Date: Nov 2007
Location: Little Rock, AR
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kerenkaye HB User
Smile Re: Trigeminal Neuralgia

I've had Trigeminal Neuralgia for about the past 15 years. It came on slowly as a "toothachy" pain on my right side. I went to the dentist and he said he could find no problem with my teeth so I went home and decided to wait it out. I was lucky, by the way, because I've since heard of many people who have had dental procedures done because of the pain--maybe they insisted. But that isn't the problem. Anyway, it would go away for awhile, maybe months, but would come back--a little stronger each time. I went to the dentist at least three times with it and each time he assured me it wasn't a dental problem. I asked my Doctor about it and he didn't come up with anything. I finally did some sleuthing on the internet and came up with the diagnosis myself. But it kept getting worse and worse and finally the pain became unbearable. It was not a constant pain. Instead it was intermittent, but the last time it hit me before I got relief it was unbearable. It would hit me for about 30 seconds and then quit, but I might have another pain in the next 5 to 20 minutes. I didn't even get relief at night. I couldn't find a position that would relieve the pain. I sat up three or four nights trying to find a good way to sleep but the pains would hit me and I couldn't sleep. It was miserable, to say the least.

I finally went to a neurolagist. He prescribed tegretol which was a godsend. It finally gave me relief, although I had to take a high dose. He also suggested MVD surgery (microvascular decompression), and I quickly agreed to it. I had to surgery about 8 years ago and haven't felt any pain on my right side since then.

But that's not the end of the story, because within a year or two after the surgery I started realizing that I was getting TN on my LEFT side. I read somewhere that 3 out of 10 people who have it will get it on both sides. It has been slow coming on and hasn't been too painful until recently. It has been considerably different than the other side...slower to come on and more periods of remission. The few times that I've had bad pains I think they were even worse than on the other side (I didn't think they could be!) but they weren't as recurring. I would have a really bad pain but no more and it would go into remission again. I have been on tegretol (1 pill) almost constantly for the past few years, and only recently had to start taking more to keep it under control. I know that I am going to have to deal with this surgically before too much longer and am looking at my options. There is a gamma knife surgery that isn't nearly as invasive as the MVD. I might try that to start with. I'm 68 years old and the MVD surgery is very invasive...they go into the skull and fix a blood vessel which is laying on the trigeminal nerve and causing the pain.

Anyway, that's my story, and I'm stickin' to it! So good luck to you if what you have IS TN...although I would say to the person who wrote the original post that what you have is more likely to be "atypical" face pain. It doesn't sound the same as TN. But if it is, tegretol might help. Tegretol is not without side effects, too, so talk to your doctor. Actually, I haven't had any, and I do get a blood test regularly to make sure it isn't damaging my liver. Neurontin, by the way, didn't even dent my pain originally. And neither did accupuncture, or any of the other kookie things I tried.

Good luck, as I said!