What sort of treatment options are you all finding effective. How are your Medical Insurance providers covering your treatments? I have seen some International Medical Insurance that cover almost all of the cost. Can everyone post what they are trying and what sort of success they are having. Any tips or advice welcome.
Hi Cindy,
How long have you had TN? What treatments are you receiving? I have had TN for 8 years and for the first 7 1/2 years I only took Carbamazepine, that is all I thought that I could do. About 6 months ago my pain was unbearable. I found the book " Striking Back!" It is a must have for anyone with TN. I found out there is alot of meds and operations they can do. I am now taking 1200 mg Carbamzepine, 100mg Amitriptyline,and 900mg Gabapetin daily. The Gabapetin is causing some problem with seeing double and confusion. I will be having MVD surgery on Feb. 12th. My medical insurance is paying for everything except a small co-pay( $10.00) for meds and ($ 30.00) for doctor visits, the operation is completly paid for. Anyway, I hope this answers some of your questions. As for tips and advice first get the book, stay out of cold winds, also lights, smells, stress and vibrations( sorry for the spelling) can cause attacks. Get an MRI or MRA to see if you have a blood vessel compressing the nerve. Hope this helps.
Debbie
Hi Cindy,
I didn’t see your page. But I’ve had TN for about 5 years. My pain came under control fairly quickly with tegretol. I did well for a couple of years with a few times of increased pain. I changed neuros and eventually changed to neurontin. I tried Lyrica but it didn’t work. Neurontin did well most of the time and I took a really low dose for quite some time. Even the times with increased pain, I took an increase of neurontin and steroids. But then in Oct I had a severe headache and for some reason I decided to put ice on my face. Although I had been having some teeth pain (never had that before) for a few days, I started with severe pain that increased and never really quit for months. I increased neurontin to 3600 mg a day, added tripleptal and tried several pain meds. Nothing helped. I tried ganglion nerve blocks but they didn’t help. I eventually had the MVD surgery in Apr 09. I had good success. Although I am not pain free, the pain does not compare. And I have decreased some of my meds. Overall I am doing well. The pain is really minimal compared to pre-surgery. I would not hesitate to have the surgery again should the pain start again. A vein was found wrapped around my nerve. Liz K.