Hi. I have suffered from trigeminal Neuralgia now for about 12 years. Tried different medications which don't seem to help but the TN does reduce to a managble level on it's own for months at z time. I have now had it bad since January struggling to eat, talk, drink and walk on hard surfaces some time. Doctors trying some new meds while I' wait for a referral ( up to 21 weeks they say) to neurology. My problem started after a dental crown. Has anyone ever had the same problem as I'm now getting to the point where I'm convinced removing that crow may help.
Rita
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
I understand your pain, I had TN for a year and a half and it was the absolute worst pain imaginable. I used Dr. Lee at the Ft. Worth Brain and Spine, he performed the microvascular decompression surgery (cutting the hole in the skull and wrapping the nerve in Teflon) it has truly been a live changer for me. I no longer have the electrical shocks.
One 100 mg of gabapentin takes care of the pain for me. I “should” do the surgery. I dread an MRI to find the nerve. I hear there’s a place north of me that has one day a week where scared folks like me can be put under to do the brain MRI. I need to check that out. It is absolutely the worst pain I have ever felt.
I ran out of gaba on a vacation once and it came back in full force. I used a mild muscle relaxer and tylenol and that helped.
I have PHN misery. My daughter researched that treatment and begged me not to try. I am not scheduled, but I'm going to get a neurorectomy this year. Are you in the online group for PHN? People share what has or has not helped. It seems to be very individual. ❤️
One 100 mg of gabapentin takes care of the pain for me. I “should” do the surgery. I dread an MRI to find the nerve. I hear there’s a place north of me that has one day a week where scared folks like me can be put under to do the brain MRI. I need to check that out. It is absolutely the worst pain I have ever felt.
I ran out of gaba on a vacation once and it came back in full force. I used a mild muscle relaxer and tylenol and that helped.
Hi. I was on a larger dose of gabspentin for s couple of years. Over time the pain subsided for a couple of years just slight pain now and then but I could live with that. This time it's come back worse than ever and medication not working . Iv had three different medications over the years but the pain has a mind of it's own. I'm mainly pain free when I lay down so I think the nerve moves away from the blood vessels on that position. Been referred to a neurologist but it's upto 21 weeks waiting list unfortunately.
Thank you so much. How long have you had tn2. Please don't get affected me asking you a lot just figured out what I have. It seams like it progresses very quickly. Do you have ringing in your ears? I am very scared that is why I am asking you a bunch of questions.
My TN type 2 began about 4 years ago with pressure pain on my right ear. Two years ago it expanded to the right side of my face including ear, nose and eye as well as head. Persistent pressure and numbness at this time. Ordinarily, Lyrica works along with avoidance of groups. It is activated by wind, touching, etc MRIs of brain indicate all is normal.
One 100 mg of gabapentin takes care of the pain for me. I “should” do the surgery. I dread an MRI to find the nerve. I hear there’s a place north of me that has one day a week where scared folks like me can be put under to do the brain MRI. I need to check that out. It is absolutely the worst pain I have ever felt.
I ran out of gaba on a vacation once and it came back in full force. I used a mild muscle relaxer and tylenol and that helped.
They kept telling me (3 different doctors) that I had trigeminal neuralgia and treating me for that. Turns out it's supraorbital neuralgia. Once I was treated for that, my pain is almost completely gone.
Connect
Connect
Like
Helpful
Hug
Apologies, thank you @johnbishop . I was refering to Trigeminal Neuralgia. Thank you for the link you provided! Much appreciated.
-
Like -
Helpful -
Hug
1 ReactionDoes anyone have any info on stem cell treatment for post herpetic neuralgia (aftermath of shingles)
-
Like -
Helpful -
Hug
1 ReactionHi. I have suffered from trigeminal Neuralgia now for about 12 years. Tried different medications which don't seem to help but the TN does reduce to a managble level on it's own for months at z time. I have now had it bad since January struggling to eat, talk, drink and walk on hard surfaces some time. Doctors trying some new meds while I' wait for a referral ( up to 21 weeks they say) to neurology. My problem started after a dental crown. Has anyone ever had the same problem as I'm now getting to the point where I'm convinced removing that crow may help.
Rita
-
Like -
Helpful -
Hug
2 ReactionsI understand your pain, I had TN for a year and a half and it was the absolute worst pain imaginable. I used Dr. Lee at the Ft. Worth Brain and Spine, he performed the microvascular decompression surgery (cutting the hole in the skull and wrapping the nerve in Teflon) it has truly been a live changer for me. I no longer have the electrical shocks.
-
Like -
Helpful -
Hug
3 ReactionsOne 100 mg of gabapentin takes care of the pain for me. I “should” do the surgery. I dread an MRI to find the nerve. I hear there’s a place north of me that has one day a week where scared folks like me can be put under to do the brain MRI. I need to check that out. It is absolutely the worst pain I have ever felt.
I ran out of gaba on a vacation once and it came back in full force. I used a mild muscle relaxer and tylenol and that helped.
-
Like -
Helpful -
Hug
2 ReactionsI have PHN misery. My daughter researched that treatment and begged me not to try. I am not scheduled, but I'm going to get a neurorectomy this year. Are you in the online group for PHN? People share what has or has not helped. It seems to be very individual. ❤️
-
Like -
Helpful -
Hug
1 ReactionHi. I was on a larger dose of gabspentin for s couple of years. Over time the pain subsided for a couple of years just slight pain now and then but I could live with that. This time it's come back worse than ever and medication not working . Iv had three different medications over the years but the pain has a mind of it's own. I'm mainly pain free when I lay down so I think the nerve moves away from the blood vessels on that position. Been referred to a neurologist but it's upto 21 weeks waiting list unfortunately.
-
Like -
Helpful -
Hug
2 ReactionsMy TN type 2 began about 4 years ago with pressure pain on my right ear. Two years ago it expanded to the right side of my face including ear, nose and eye as well as head. Persistent pressure and numbness at this time. Ordinarily, Lyrica works along with avoidance of groups. It is activated by wind, touching, etc MRIs of brain indicate all is normal.
-
Like -
Helpful -
Hug
1 ReactionMRI is painless and a scan similar to CT. Please do get one for your peace of mind.
-
Like -
Helpful -
Hug
1 ReactionThey kept telling me (3 different doctors) that I had trigeminal neuralgia and treating me for that. Turns out it's supraorbital neuralgia. Once I was treated for that, my pain is almost completely gone.
-
Like -
Helpful -
Hug
1 Reaction