What is Trigeminal Neuralgia
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. T...
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Major flair up
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I have had TN for approximately 15 years. I normally have flair ups once or twice a year where I have to increase my Tegretol for a little while and then I can cut back again. This time the pain has been unbearable! I was taking 150mg a day and I am up to 1200mg a day and it isn't helping. They say to cut back on stress. I am a 911 dispatch for a very busy agency and that isn't an option. The Tegretol makes me loopy hence I'm having a hard time at work. I guess my question is three fold....have any of you had sucess with any meds other than Tegretol? Also the neurologist I use to see has retired and I can't get my medial records including my MRIs and I am thinking of going to Boston to have the gamma knife surgery. Do any of you know what they will require me to have? Which leads me to have any of you had the proceedure? I am looking for both the good and the bad. Thank you for any help you are able to provide.
Posted on 09/23/09, 06:09 pm |
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I've had TN for three months and have finally arrived at 900 mg/day of Tegretol to control my symptoms which are fairly mild now. From what I understand, 1200 mg/day is not going overboard with meds. As for your medical records, I believe they're legally yours and you have every right to get them. Good luck. 
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I was diagnosed a year ago. Since then I have taken Lyrica (allergic) and now Nuerontin (3200 mg per day) and most recently taking Trileptal (600 mg per day). I haven't been given Tegretol. My neurologist just casually mentioned the gamma knife procedure. So not sure. But he will probably want to consider that more seriously if this dosage of medicine doesn't work.
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I would think the new neursurgeon will do a new Mri and I would ask for thin slice do see more.
If you have the Gamma Knife. the procedure like a walk in the park as far as having any pain. THe attachment of the frame is awkward but that give you an IV sedation and is very little discomfort. Once in the gamma knife machine you don't feel anything. Yo will have second MRI with the head frame on and they attach a gismo(halo) that makes it comfortable to lay in MRI machine It is taken off as soon as the Mri is complete THen you wait for the actural surgery inside of the Gamma Knife Machine . You listen to music or bring your own fav. Afterwards they remove the head frame that hurts a little for a moment and you will have a headache.They will meds for that. But any discomfort you have is very minor compared to TN pain.It sounds scary, but it not a thing worry about. I was amazed. I would call this center and ask what you need to bring, but again the surgeon is going to want new MRI and another on surgery day. as this is a very precisioin process. But with the eqp being used and your head is locked in place it is a successful procedure. THe results may or maynot be successful, but it falls in the 80% So good luck and I know you will in the 80% success for surgery.
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I have had the gamma knife surgery it didnt work for long on me.i had maybe 3or 4 months of some relief.i am in pain most of the time.I hope it would work better for you.I have had TN for about three years now there is days that i can't even move or blink my eyes.good luck
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Do you have the nerve compression?
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I, like you have had TN for about 10-15 years and recently had a terrible flare up!! The worst I have ever had. I have had Gamma Knife and it worked for several years. I actually went to see an accupuncturist who was able to get me off all my meds and kept me pain free for 2 years. Recently I have been under a large amount of stress and it has flared up. I have gone back on my meds at a smaller dose. I take Tegretol and Neurontin twice daily. I still see my accupuncturist, who I hope can get me back off my meds again, after I try to eliminate some of my stress. My last resort will by MVD surgery, which I really don't want to have, but I also don't want to live like this for the rest of my life!! My thoughts and prayers are with you!! You have every right to get your med recs. They are yours!! Please keep in touch!!
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