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Hi everyone, I've not been around here for some time now. Everything was going great 'til last week. Got the same old symptoms only more painful. I can't think straight and all I want to do is hide. My wife is out getting Trileptol for me. Yeserday I treated her as the enemy. She's worried, kids are worried. Just want relief. This TN is so familiar yet I've been fine for a few years. Guess that Gamma wore off. I'm going to see about doing that again 'cuz functioning is difficult. Teeth jaw line and eye. Knee is shakeing. I know I can get better but right now sucks. Andy

Andy,

I'm real sorry to hear it's back.

I've been dealing with it without drugs 1-1/2 years now. Have good and bad days. My TN buddy in the next cubicle thinks I'm nuts, but he's still new to this (his third year). At first, it was pretty hard getting along without the meds, but now I am used to it. Only problem is I'm getting a little fat from avoiding movement. Still, I am much happier without all the drugs and, if anything, I am less stressed by it than when my focus was on controlling it.

Any chance you might consider going cold-turkey if the gamma-knife doesn't work out. It's really not that awful once you get passed fighting it, and so much better having a whole brain.

Good luck,
Bob S

PS. Careful with the language. We have young readers now. ;)

Hi Bob this is the first time in over three years i've taken any meds. I've gone for acupuncture a few times and have sought herbal solutions and have done great up until last week. It hit me out of the blue as if it was never away. When I had the Gamma Knife my DR. said it may stay gone and it may come back. He said it's normally good for about three years. It's been 3and1/2 years so I did pretty good. I know all about cold turkey. Right now I'm desperate. Trileptal was better than Tegretal Neurontin or the mix. So that's where I'm at. As for my language I'll watch it but between the pain and having to come back to these pills it sucks{p.s} Andy

Andy! Hello!
 

Andy, I wondered if we'd ever hear from you again. Not that we wanted to hear because you were feeling rotten, it's just that once a pal always a pal and I often was curious about where PapaDrew had gotten to. Tough to have it all land on you again like a ton of bricks - it might be a little easier to take if you just eased your way into it. As for the meds, I think I'd opt for keeping the pain at bay. I find that I can operate quite well on the Trileptal and am not eager to have pain become the guiding feature of my life. The more I read about the workings of the brain and nervous system the less I want to get those little pain grooves in the brain dug any deeper. (I'm such an old lady - you kids all probably had plastic desks or something, but I still remember trying to work on my penmanship on a desk that had names and dates and doodles from a zillion years past engraved in the surface. That's how I think of my brain now.)

Get some relief and let yourself have time to consider what your next step is. We have a lot of people here now with experiences to share on the different treatments and outcomes. Meanwhile, hugs and kind thoughts, Nancy

Hi Andy,
Long time no see.. I'm sorry to hear your pain is rearing it's ugly head again, it's been nice you popping in from time to time to let us know you were doing well.
I like Nancy would take the meds, Trileptal also works pretty well for me right now, I still have breakthrough every day, but overall it's better.

I hope the meds soon have the monster under control and your feeling better.
I'm sure your wife and children are very anxious too, I hope for all of you peace is soon restored.

Take Care
Tracy.

Hey, Nancy.

I always wondered who carved all that stuff in my desk. Now I know. It was YOU! :D

Bob S