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Does anyone take Tegritol for burning mouth syndrome

Posted by healthybon @healthybon, Jan 10 10:12am

I’ve tried everything…anybody successfully taken Tegritol?

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julbpat | @julbpat | Jan 11 10:56am

I take Tegretol for small fiber polyneuropathy. It diminishes the burning pain and has few side effects for me. I have intermittent burning mouth pain, with small blisters, as my neuropathy takes turn affecting different parts of my body! I took it for 20 years for seizures. When I resumed it 1.5 years ago, I had weight gain. That worried me at first, but honestly, as my neuropathy has progressed, looking fat has become one of the least of my problems.
I’ll try to find my initial post about my Tegretol experience.

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1 reply
thoracic | @thoracic | Jan 14 8:46pm
In reply to @julbpat "I take Tegretol for small fiber polyneuropathy. It diminishes the burning pain and has few side..." + (show)
@julbpat

I take Tegretol for small fiber polyneuropathy. It diminishes the burning pain and has few side effects for me. I have intermittent burning mouth pain, with small blisters, as my neuropathy takes turn affecting different parts of my body! I took it for 20 years for seizures. When I resumed it 1.5 years ago, I had weight gain. That worried me at first, but honestly, as my neuropathy has progressed, looking fat has become one of the least of my problems.
I’ll try to find my initial post about my Tegretol experience.

Jump to this post

I took Tegretol XR for 18 years, it did help me a lot. The only thing I have checked frequently was my sodium levels. My doctor told me that even with the low sodium levels if I took electrolytes, protein, and sodium chloride tablets, I could stay on it if I wanted to. You probably know it already, but there are many anti-seizure drugs, besides Tegretol that you could possibly try.

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1 reply
healthybon | @healthybon | Jan 15 12:40am
In reply to @thoracic "I took Tegretol XR for 18 years, it did help me a lot. The only thing..." + (show)
@thoracic

I took Tegretol XR for 18 years, it did help me a lot. The only thing I have checked frequently was my sodium levels. My doctor told me that even with the low sodium levels if I took electrolytes, protein, and sodium chloride tablets, I could stay on it if I wanted to. You probably know it already, but there are many anti-seizure drugs, besides Tegretol that you could possibly try.

Jump to this post

Thoracic, Thanks for sharing your response. I tried Tegritol and it made me sick. I am on neurontin now and in my situation the burning mouth has evolved into painful nasal passages and cheeks next to my nose ( sinuses). My pcp suspects that I have glosspharangeal neuralgia which involves a nerve thing next to the trigeminal nerves. My burning mouth has evolved into an unbearable, excruciating type of pain..it is unbearable. He has me on oxycodone temporarily until I get in to see the neurosurgeon he has referred me to in Atlanta. So I’m really hoping to get answers. It’s very scary.

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kthlngrateful | @kthlngrateful | Feb 23 7:31pm

I was on Tegretol briefly and my new neurologist and psychiatrist were not happy I was put on that and switched me to Lyrica. I take 400mg daily. It has helped with the nerve pain. I have clonozapam for days it does flare up. I have had the burning mouth since June. We now believe there is a possibility it was triggered by coming off prochlorperizine and it is tardive dyskinesia

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