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Trigeminal Neuralgia Community
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Best treatment for Trigeminal Neuralgia

I have been diagnosed with trigeminal neuralgia. Severe electric shocks that about 10 years ago started in my jaw and would move to the top of my head and to my ear/side of my head. Now when (past 5-6 years) I get them they start in my jaw and or ear (typically right side) and then it progresses to the side of my head behind my ear. I get these 3-4 times a year for about 4-7 days. It is aweful. My doc prescribed Vaium at first- this helped. Then he actually gave me the diagnosis a few years back and started treating me with a herpes medication (ancyclovir/valacyclovir-sp?) as well as occasional muscle relaxers but really- nothing seems to help.
My uncle, at age 65 was diagnosed with MS after he simply blacked out/passed out. They ran tests and found late diagnosed MS. It seems he has had electric shocks for years and just muscled through them thinking they were headaches.
I am scared I have MS. My doc won't do an MRI or a CT.
Questions
What type of doc do I need to see?
What meds work the best for occasional occurances? I don't want to live on medications if I don't have to.
2 Responses
Avatar universal
I also am afraid it's MS that I would be diagnosed with.  I'm 66 and got the TN ABOUT 3 years ago.  Its progressively gotten worse, and now I have a major flare up that lasts most of the day on and off.  The  pain is excruciating..  I'm on Gabapentin and not sure it's helped the TN pain, but has helped my sciatica pain!  I've heard Tegretol works.  I'm calling my neurologist tomorrow for an appointment ASAP!  That is where you need to start, as this only gets worse.  So sorry you have this too.
2 Comments
Thanks Sara!! I am getting an apointment ASAP with a Neurologist!
Thanks Sara!! I am getting an apointment ASAP with a Neurologist!
Avatar universal
You want a neurologist that knows TN and MS. Ask them how many patients they've treated with TN. There is a special MRI for TN. They should prescribe an anti-seizure drug to control the TN pain. You need to slowly increase the drug until the pain is controlled. Docs without experience in TN don't seem to know that. Best of luck to you.
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