Hello everyone! My name is Bekki. I’m new here. Also new to TN pain. Must say it’s not very fun. Going in for MRV and MRA this week. They did find a trigeminal variant but that is not related to the TN that I’m aware of. This all started in early November they thought I was having a stroke right side numbness/tingling facial droop, horrible headache, trouble with word finding. MRIs were normal. Right side weakness tingling went away they figured it was hemiplegic migraine. Then the shooting pains in my face started. Here we are. They started me on topomax I’m on 150 no real relief. They want to start me on tegretol but I have a bleeding disorder besides the side effects are a bit scary. I’d like to up my topomax a bit to perhaps 300 mg. I don’t have the side effects that are typical (yet). Just curious if anyone has found relief from topomax? Or any other medication that is not tegretol? Any input would be appreciated as I’m just starting this long journey!
Just hang in there. We are all with you!
You might want to ask your doctor about Gabapentin. Wishing you the best of luck.
Trileptal is another good med, as is lamictal.
I have TN and I have been on Gabapentin(Neurontin) high dose (3600mg.) for almost 2 years and it has helped me tremendously.
if it’s really hemiplegic migraine you should look into anticonvulsant meds and calcium channel blockers before gabapentin. Although gablapentin is an anticonvulsant it’s a secondary one that works better in combinations than alone. Hemiplegic migraines are very rare and very dangerous! And, it’s usually genetic. Anyone else in the family have these problems?
Tegretol worked better for me, but cause skin condition. Topmax cause me to have a balance problem, fell 4 times within month last time breaking a rib. That certainly took my mind off my other pain. I was put 800 mil of motrin and hydrocodone and quit oxycodone and it helped with rib and ATN pain. I have tried so many drugs and got really tired of side effects. But one thing that worked for me was to get a pain worse than I had and now I am just waiting and feeling lucky
I did not kill myself going around not being all there mentally.
I’m Jamie I been having seizures 1998. The smaller ones started beforehand when I didn’t know what going on. All the neurologists that have seen me said. Oroville,Chico,San Francisco and U.S.Davis seam to say the same. Spinal Meningitis when I was six months old. Bad case of measles concussion when I was eleven and 17 in bad car accident. They found scar tissue on my right front lobe. I Finnaly let Davis do it in 2002. Still seizures. Again in 2004Infection. Now plate. Now lot’s of pain. It took until 2011. Davis keeps wanting me to take pills for pain. I asked finally why don’t they work. Pain managemt. Your nerves are dead in your right side. They sent me to physical therapy last year and it didn’t help. Trying 1200million gmail Gabapine the last six months. Doesn’t help. Hurt my back called my old friend I used to work with. When I first got started in the esticiecian business. She does acupressure and more. Jon Shin Jyutsu Shiasu TMJ I’ve had 2 treatments and I’m going to continue to have some more. Talk to Davis this Friday on the 23rd. I’m tired of my pain. I forgot to tell you guys I’ve been on generics for topamax 800 mil. 1800 mil. For the past thirteen years. The milligrams just Finnaly stop here the last two years ago or so.