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.
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.
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.
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.
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.
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
I have had BMS for 14yrs. I been to many doctors, including dentists, oral surgeons,ENT,Gastroenteritis. I also have tried medications, clonozapam,neurontin, elavil and magic mouth wash to name a few.
Lately I have been reading how Low Level Laser Therapy has helped.
Has anyone tried it?
I have had BMS for 14yrs. I been to many doctors, including dentists, oral surgeons,ENT,Gastroenteritis. I also have tried medications, clonozapam,neurontin, elavil and magic mouth wash to name a few.
Lately I have been reading how Low Level Laser Therapy has helped.
Has anyone tried it?
I have been wondering this as well. Have you gotten any other responses or feedback? Trying to find a place that it would be done. So far, I have hit a few places in FL but I am in Wisconsin!
I have had BMS for 14yrs. I been to many doctors, including dentists, oral surgeons,ENT,Gastroenteritis. I also have tried medications, clonozapam,neurontin, elavil and magic mouth wash to name a few.
Lately I have been reading how Low Level Laser Therapy has helped.
Has anyone tried it?
I too suffered with burning mouth……several years. In Oct. was diagnosed with gastritis with hyperplasia, reflux, and Barrett’s. Treatment with high dosage ppi and sucralfate liquid has almost eliminated my burning completely. My body is so relieved and finally able to relax. I got an esophagus scope and the biopsy gave me my diagnosis! Took 30 days of treatment to get slight relief from burning. 60 days of treatment I was able to stop my pain pills and pregabalin. I continue with the baclofen because it helps reflux. I am so much better. I changed ppi 3 times and Nexium seemed best at 40 mg twice daily. Could be some bile reflux involved too which only the baclofen and sucralfate liquid would help.
Mylate mother used tegretol for TRIGEMINAL NEURALGIA. It may well be that it is not your mouth that is burning, it is the trigeminal nerve of which there are two, one on each side of the face. The nerve runs from the braid kind of behind the ear down through the cheek. It hurts severely,m paid 10 on a scale of 10 when you get episode of trigeminal neuralgia. You maybe want to see a neurologist about "burning mouth". My mother was able to obtain long term relief after years of suffering with a neurosurgeon who used focused beam radiation, one time on each side, to "break" the stem of the nerve. She had the done twice. The first time it lasted 10 years of relief.
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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.
https://connect.mayoclinic.org/discussion/tegretol-for-length-dependent-small-fiber-neuropathy/
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.
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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1 ReactionI 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
I have had BMS for 14yrs. I been to many doctors, including dentists, oral surgeons,ENT,Gastroenteritis. I also have tried medications, clonozapam,neurontin, elavil and magic mouth wash to name a few.
Lately I have been reading how Low Level Laser Therapy has helped.
Has anyone tried it?
-
Like -
Helpful -
Hug
1 ReactionTegretol can be associated with severe skin side effects in first several months after starting. May be better to try something else..
I have been wondering this as well. Have you gotten any other responses or feedback? Trying to find a place that it would be done. So far, I have hit a few places in FL but I am in Wisconsin!
I too suffered with burning mouth……several years. In Oct. was diagnosed with gastritis with hyperplasia, reflux, and Barrett’s. Treatment with high dosage ppi and sucralfate liquid has almost eliminated my burning completely. My body is so relieved and finally able to relax. I got an esophagus scope and the biopsy gave me my diagnosis! Took 30 days of treatment to get slight relief from burning. 60 days of treatment I was able to stop my pain pills and pregabalin. I continue with the baclofen because it helps reflux. I am so much better. I changed ppi 3 times and Nexium seemed best at 40 mg twice daily. Could be some bile reflux involved too which only the baclofen and sucralfate liquid would help.
Mylate mother used tegretol for TRIGEMINAL NEURALGIA. It may well be that it is not your mouth that is burning, it is the trigeminal nerve of which there are two, one on each side of the face. The nerve runs from the braid kind of behind the ear down through the cheek. It hurts severely,m paid 10 on a scale of 10 when you get episode of trigeminal neuralgia. You maybe want to see a neurologist about "burning mouth". My mother was able to obtain long term relief after years of suffering with a neurosurgeon who used focused beam radiation, one time on each side, to "break" the stem of the nerve. She had the done twice. The first time it lasted 10 years of relief.