I had TN for almost three years. In the beginning I thought I was losing my mind and had all the symptoms discussed in this forum. About three months after its onset, a friend suggested I'd try acupuncture.
I did and it made a big difference. It didn't get rid of the TN but significantly lowered the pain level and also raised the level at which I would trigger an attack. I received acupuncture twice a week and the TN got better and better and close to disappeared. I'm 71 year old male and very fit, but my memory is getting worse. A friend recommended Ginko Biloba which supposedly increases blood flow to the brain and memory with it. Shortly after taking those pills, whatever the remnants of the TN were, the TN totally disappeared.
According to my doctor, any acupuncturist will know where to place the needles to treat TN. I wish more people knew about it, I didn't see any mention of it in TN forums. Good luck to all you sufferers!
I had TN for almost three years. In the beginning I thought I was losing my mind and had all the symptoms discussed in this forum. About three months after its onset, a friend suggested I'd try acupuncture.
I did and it made a big difference. It didn't get rid of the TN but significantly lowered the pain level and also raised the level at which I would trigger an attack. I received acupuncture twice a week and the TN got better and better and close to disappeared. I'm 71 year old male and very fit, but my memory is getting worse. A friend recommended Ginko Biloba which supposedly increases blood flow to the brain and memory with it. Shortly after taking those pills, whatever the remnants of the TN were, the TN totally disappeared.
According to my doctor, any acupuncturist will know where to place the needles to treat TN. I wish more people knew about it, I didn't see any mention of it in TN forums. Good luck to all you sufferers!
I take Carbomezapene for Trigeminal nerve pain that affecting the middle nerve in the teeth, gum, and nose areas. When it started on 2018, I took 100 mg twice daily. After a couple of years, I was able to stop taking it. It came back a few years later. Now I take 200 mg twice daily. Without the medication, the pain is very intense.
thank you smooch. this info was exactly what I was looking for. Did you find out about this procedure from Mayo or from the doctor in Philly? I liven Louisville KY and go to UofLouisville pain management. I am scheduled for a pain stimulator implanted in my spine, but I had the trial of this and did not get much relief. However, it is my last hope. I've had nerve blocks, and seems like a hundred other treatments and take Lyrica and Cymbalta, along with Hudrocodone10. My daughters and I keep investigating all things we hear of. My daughter talked to a nurse about the gamma knife. The nurse said her father had this and it did not work for him, so I haven't planned it. It also has a short time of relief...I think it is 2 years. I am78 years old and hurt so bad I don't care whether I make it to 79. thank you so much for this info. I am calling my doctor on Monday to see if I can get this here in Louisville. thanks again for taking your time to do this. Susan Lurding. ps: did your insurance payoff this?
I am so sorry for the pain you are in. Trigeminal neuralgia is said to be the worst pain known to humanity. I developed TN after a case of shingles. The TN attacks sent me to my knees screaming and crying in pain. 1800 mg of gabapentin a day stopped the intense attacks, but I feel the opthalmic part of the trigeminal nerve, like it is moving, several times a day, but painlessly.
The microvascular decompression (MVD) surgery is a cure for TN, but only when the TN is caused by the compression of the nerve by a blood vessel. I believe an MRI can show the compression and should be read by a neurosurgeon, not a neurologist, because a surgeon is more experienced usually.
As I understand it, the shingles virus can damage the trigeminal nerve as it moves along the pathway. This is what happened to me, so it is not a compression, so MVD would not help.
I actually had an MVD in 2005 for a condition called hemifacial spasm where there was a compression on the 7th cranial nerve causing the face to spasm. I had the condition for 4 1/2 years and the surgery cured me. I went to Pittsburgh from Texas to have the developer of the MVD, Dr. Peter Janetta, to do the surgery. He actually supervised as there were multiple MVD surgeries going on at the same time and he moved from operating room to operating room. Dr. Janetta first operated on a TN patient and cured him. He continued to operate on TN patients until he began speculating that hemifacial spasm might also be the result of a compressed nerve and began curing that condition with the MVD surgery.
Have you been on the medications for TN like oxcarbazepine and others? I tried that one, but did not want to be a zombie, so went back to gabapentin. With how bad your pain is, being a zombie might be preferable.
I have TN since October. This is my third bout with it. I am 75 and taking 300mg ox carbamazepine and 300mg Gaby once a day and 150mg ox carbamazepine one a day. My question…will it ever go away?
It does depend on the cause of the TN. If it is a compression, it can be cured by an MVD, microvascular decompression surgery. I have TN as a complication of shingles, so the surgery wouldn't help me. I would not hesitate to have it as I had an MVD in 2005 to cure hemifacial spasm, so I am a fan, especially for TN because of the agonizing pain.
I am so sorry for the pain you are in. Trigeminal neuralgia is said to be the worst pain known to humanity. I developed TN after a case of shingles. The TN attacks sent me to my knees screaming and crying in pain. 1800 mg of gabapentin a day stopped the intense attacks, but I feel the opthalmic part of the trigeminal nerve, like it is moving, several times a day, but painlessly.
The microvascular decompression (MVD) surgery is a cure for TN, but only when the TN is caused by the compression of the nerve by a blood vessel. I believe an MRI can show the compression and should be read by a neurosurgeon, not a neurologist, because a surgeon is more experienced usually.
As I understand it, the shingles virus can damage the trigeminal nerve as it moves along the pathway. This is what happened to me, so it is not a compression, so MVD would not help.
I actually had an MVD in 2005 for a condition called hemifacial spasm where there was a compression on the 7th cranial nerve causing the face to spasm. I had the condition for 4 1/2 years and the surgery cured me. I went to Pittsburgh from Texas to have the developer of the MVD, Dr. Peter Janetta, to do the surgery. He actually supervised as there were multiple MVD surgeries going on at the same time and he moved from operating room to operating room. Dr. Janetta first operated on a TN patient and cured him. He continued to operate on TN patients until he began speculating that hemifacial spasm might also be the result of a compressed nerve and began curing that condition with the MVD surgery.
Have you been on the medications for TN like oxcarbazepine and others? I tried that one, but did not want to be a zombie, so went back to gabapentin. With how bad your pain is, being a zombie might be preferable.
I had surgery in January for my TN. I WAS NOT A CANDIDATE FOR COMPRESSION RELIEF. SOT I HAD THE OPERATION CALLED DREZ. THIS IS WHERE THEY CAUTERIZE THE NUCLEI OF PART OF THE TN NERVE. I NO LONGER HAVE THE TN PAIN, HOWEVER, THEY HAD TO MOVE ANOTHER NERVE TO GET TO THE TN SO I LOST FEELING IN PART OF MY LEFT SIDE. I WAS IN REHAB FOR 4 WEEKS. I AM MUCH BETTER, BUT SUFFERING FOMR NUMBNESS IN MY LEFT ARM AND HAND. I NO LONGER HAVE THE PAIN IN MY FACE, BUR THE LEFT SIDE OF MY FACE IS A BIT NUMB. I DO NOT HAVE THE EYE PAIN AND MOVEMENT, BUT MY EYELID IS STILL A BIT SWOLLEN. THIS OPERATION HAS BEEN USED SINCE THE 1930'S. IF YOU WANT FURTHER INFO, MY NEUROSURGEION IS DR. NEIMAT, UNIVERSITY OF LOUISVILLE NEUROSURGERY DEPT. GOOD LUCK
I have had severTN for3 years.It was from shingles. it affects the entire left side of my head and face, even into my mouth and nose. I have tried everything I have heard of or told about by near pain management doctors, but nothing has worked. Does anyone know anything about the surgery that Mayo info talks about. The surgery that goes thru small hole in skull and put buffers between the trigeminal nerve and the others on top of it. This info said that was the only cure. I am praying for death I am in such pain. Only the thought of my dog being alone keeps me alive. If you know anything that has helped ANYoNE with this ,please let me know
The surgery you mentioned is MVD-microvascular decompression. It only works if the TN is caused by a compression of the nerve. This is determined by an MRI. The MRI should be read by a neurosurgeon, not a neurologist, as the surgeon is more experienced in finding compressions.
I'm not sure you are a candidate, because your TN came from shingles. I also have TN caused by shingles. The shingles virus has damaged our trigeminal nerve. So, as far as I know, our TN is not caused by a compression on the nerve.
I had horrible attacks of excruciating pain until the gabapentin dosage was raised to 1800mg a day (2 300mg x 3 times a day). I still feel the nerve, like it is moving from my eye to the back of my head), but there is no pain.
I would not hesitate to have an MVD for TN if I had a compression, as I had an MVD in 2005 to cure hemifacial spasm where a blood vessel was compressing the 7th cranial nerve. TN is the 5th cranial nerve. I flew to Pittsburgh from Texas to have the developer of the MVD to do the surgery, Dr. Peter Janetta.
I see you wrote your message way back in September 2024, so hope you found relief.
Sincerely, Kathleen
I have atypical TN. Neurologist suggested I try Indomethicin and it works. Only use as needed and only works for some but it's nice to have a reprieve and wanted to share.
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I had TN for almost three years. In the beginning I thought I was losing my mind and had all the symptoms discussed in this forum. About three months after its onset, a friend suggested I'd try acupuncture.
I did and it made a big difference. It didn't get rid of the TN but significantly lowered the pain level and also raised the level at which I would trigger an attack. I received acupuncture twice a week and the TN got better and better and close to disappeared. I'm 71 year old male and very fit, but my memory is getting worse. A friend recommended Ginko Biloba which supposedly increases blood flow to the brain and memory with it. Shortly after taking those pills, whatever the remnants of the TN were, the TN totally disappeared.
According to my doctor, any acupuncturist will know where to place the needles to treat TN. I wish more people knew about it, I didn't see any mention of it in TN forums. Good luck to all you sufferers!
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3 ReactionsI take Carbomezapene for Trigeminal nerve pain that affecting the middle nerve in the teeth, gum, and nose areas. When it started on 2018, I took 100 mg twice daily. After a couple of years, I was able to stop taking it. It came back a few years later. Now I take 200 mg twice daily. Without the medication, the pain is very intense.
I am so sorry for the pain you are in. Trigeminal neuralgia is said to be the worst pain known to humanity. I developed TN after a case of shingles. The TN attacks sent me to my knees screaming and crying in pain. 1800 mg of gabapentin a day stopped the intense attacks, but I feel the opthalmic part of the trigeminal nerve, like it is moving, several times a day, but painlessly.
The microvascular decompression (MVD) surgery is a cure for TN, but only when the TN is caused by the compression of the nerve by a blood vessel. I believe an MRI can show the compression and should be read by a neurosurgeon, not a neurologist, because a surgeon is more experienced usually.
As I understand it, the shingles virus can damage the trigeminal nerve as it moves along the pathway. This is what happened to me, so it is not a compression, so MVD would not help.
I actually had an MVD in 2005 for a condition called hemifacial spasm where there was a compression on the 7th cranial nerve causing the face to spasm. I had the condition for 4 1/2 years and the surgery cured me. I went to Pittsburgh from Texas to have the developer of the MVD, Dr. Peter Janetta, to do the surgery. He actually supervised as there were multiple MVD surgeries going on at the same time and he moved from operating room to operating room. Dr. Janetta first operated on a TN patient and cured him. He continued to operate on TN patients until he began speculating that hemifacial spasm might also be the result of a compressed nerve and began curing that condition with the MVD surgery.
Have you been on the medications for TN like oxcarbazepine and others? I tried that one, but did not want to be a zombie, so went back to gabapentin. With how bad your pain is, being a zombie might be preferable.
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1 ReactionIt does depend on the cause of the TN. If it is a compression, it can be cured by an MVD, microvascular decompression surgery. I have TN as a complication of shingles, so the surgery wouldn't help me. I would not hesitate to have it as I had an MVD in 2005 to cure hemifacial spasm, so I am a fan, especially for TN because of the agonizing pain.
I had surgery in January for my TN. I WAS NOT A CANDIDATE FOR COMPRESSION RELIEF. SOT I HAD THE OPERATION CALLED DREZ. THIS IS WHERE THEY CAUTERIZE THE NUCLEI OF PART OF THE TN NERVE. I NO LONGER HAVE THE TN PAIN, HOWEVER, THEY HAD TO MOVE ANOTHER NERVE TO GET TO THE TN SO I LOST FEELING IN PART OF MY LEFT SIDE. I WAS IN REHAB FOR 4 WEEKS. I AM MUCH BETTER, BUT SUFFERING FOMR NUMBNESS IN MY LEFT ARM AND HAND. I NO LONGER HAVE THE PAIN IN MY FACE, BUR THE LEFT SIDE OF MY FACE IS A BIT NUMB. I DO NOT HAVE THE EYE PAIN AND MOVEMENT, BUT MY EYELID IS STILL A BIT SWOLLEN. THIS OPERATION HAS BEEN USED SINCE THE 1930'S. IF YOU WANT FURTHER INFO, MY NEUROSURGEION IS DR. NEIMAT, UNIVERSITY OF LOUISVILLE NEUROSURGERY DEPT. GOOD LUCK
The surgery you mentioned is MVD-microvascular decompression. It only works if the TN is caused by a compression of the nerve. This is determined by an MRI. The MRI should be read by a neurosurgeon, not a neurologist, as the surgeon is more experienced in finding compressions.
I'm not sure you are a candidate, because your TN came from shingles. I also have TN caused by shingles. The shingles virus has damaged our trigeminal nerve. So, as far as I know, our TN is not caused by a compression on the nerve.
I had horrible attacks of excruciating pain until the gabapentin dosage was raised to 1800mg a day (2 300mg x 3 times a day). I still feel the nerve, like it is moving from my eye to the back of my head), but there is no pain.
I would not hesitate to have an MVD for TN if I had a compression, as I had an MVD in 2005 to cure hemifacial spasm where a blood vessel was compressing the 7th cranial nerve. TN is the 5th cranial nerve. I flew to Pittsburgh from Texas to have the developer of the MVD to do the surgery, Dr. Peter Janetta.
I see you wrote your message way back in September 2024, so hope you found relief.
Sincerely, Kathleen
I have atypical TN. Neurologist suggested I try Indomethicin and it works. Only use as needed and only works for some but it's nice to have a reprieve and wanted to share.