Hi, As you followers know, I am a recent member and because I don't know anyone in person that suffers from TM. I have suffered for about 20 years now, and my current bout is now going on 6 weeks. I have taken Neurontin and Tegretol in the past, but became allergic to it because they were giving me such high doses that I had to go to the ER because I couldn't stop vomiting. I typically take pain killers, muscle relaxers and acupuncture, but I am at my wits end with this bout. I have a totally supportive husband, but I know this has to be getting to him. The lighting strikes and pain is so unbearable. I have e-mailed my doctor, but wondered if anyone out there has any suggestions??? I walk 5 miles a day and drink lots of water, but am at a complete loss and don't want to be a zombie. PLEASE, any suggestions would be greatly appreciated. Thank you. Debbie
Hi Debbie,
I’m sorry for the pain you are going through. I know you must have tried many different medications, but a month I was referred to UCLA and saw a neurologist which prescribed Namenda. I had not heard of anyone with TN that was taking it, but she said that they believe it may help TN. I was started at 7 mg and am now at 14 mg and it seems to be helping. I am not sure if it is something you have tried, but it is worth considering.
Hi Beth,
Thank you so much for your comment regard Namenda. I will look it up and talk with my Doctor. I am desperate at this point.
Hi Debbie, I feel your pain. have you tried a Trileptal & Lyrica? Works pretty good for me, but it takes a little while to build up in your system. Certainly no cure, but it helps. Good Luck
Hi Brad,
Thank you so much for the suggested drugs. I have a phone appt. with my neurologist and will ask her about these. It is really helpful to talk to others who share this affliction. Debbie
try botox it works
Hi Beth, My Neurologist has started me on NORTRIPTYLINE. I will let you know how it goes. My nerves are rattled still from the horrific quake we had here. Debbie
Hi Debbie,
I really hope the new medication works for you; please keep me informed. I am so glad to hear that you are okay and weren't injured in the earthquake.
Bethany
Debbie,
Have you discussed options with your neurologist or neurosurgeon other then meds. Its very common for the meds not to work after awhile and for the episodes of pain to get longer as time goes on. My heart goes out to you suffering for 20 yrs. I suffered for 8 years with the same electric shock pain and it would go on for 2 months at a time so i know what you are feeling. Have you discussed the possibility of MVD surgery. If an option for you it is good to get while you are so young and in such good physical condition. Certainly helps with the recovery. It is the one true option that can fix the problem and get you off all meds. I had mine done at age 33 and that was 31 yrs ago after years on tegretol. The meds stopped working and made me a zombie. Good luck and keep us posted..ED
Hi Ed, I am in my early 60's and have been through several un-related surgeries, and am in no hurry for any more. I broke my neck and had spinal cord surgery, and the fusion didn't take correctly on one side, so I walk with a cane (a pretty one mind you). I haven't heard a lot of positive feedback other than yours regarding this. I am happy that it worked for you. So far on day 5, the NORTRIPTYLINE is starting to calm down the shocks. Next week I raise the dose to 2 pills a day. I will post how it work. On another note, we had another good earthquake jolt this morning, which just does wonders for the nerves. Thank you again. Debbie