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I am a 76 year old women and have had this condition for almost a year. it is getting worse everyday. been to many doctors and not one of them has heard otf it, I am getting desperate
I am a 55 year old woman who has had this for 13 years. It is devastating and has completely changed my life…I belong to a group of woman on line who have this and we are trying to figure out how to treat this. I have decided to go to a holistic dr to get bioidentical hormones. I think it’s either that or from GERD, something going on in our digestive track. will be gettng my kit for hormonal testing…will post my results.
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Lauren,after 18yrs and so many Dr’s i wonder is there really a cure?I think there is no funding for this,and it’s put on the back burner.I enjoying comunicating with all those who suffer from this condition…I believe were are all having the same problem,and the same condition…
Sheetrock, I am 63 years old and this condition began for me in 2004. I also believe there is little funding for this and that doctors don’t know how to treat it.
Has anyone gone to the Mayo clinic in Phoenix? They have a web site for this condition so I would think they have some insight into this problem. I had a very bad experience at the Pain Clinic at the University of Colorado in Denver. They wanted to give me a round of shots in the neck, although they had no reason to believe it works, other than saying that it helps migraines.
Your symptoms are very similar to mine. I can relate to how desparate you feel. Please continue to share with others on this site.
I have had relief from yoga, which I have practiced for many years. I’ve had to adjust some of the positions to accomodate the pain. I’ve also been very fortunate in finding a chiropractor who uses a “pro-adjuster” to re-align my neck and spine when needed. This is a very gentle, computer guided approach which is non-invasive and helps with the TMJ issue.
Lauren,thanks for the reply..Tufts cranial facial clinic in Boston wanted to give me shots in the tounge.This could cause permenent numbness in mouth and facial drooping..It would probably settle down the nerve,and if it flared up again,he could repeat the shot..I am scared to do it…I’m thinking of Mayo clinic..
I’m certainly no expert but I’ve been advised by several doctors to avoid taking this kind of shot because the side effects are not well researched. It all depends on each person’s symptoms, etc. as to what works and what doesn’t. I’m also about to try the Mayo clinic. Some doctors think I have atypical trigeminal neuralgia. It is characterized by dull, continuous pain. There is simply no cure. One doctor told me to avoid surgery and to find ways to manage it. That’s what I’ve been doing, but it takes a lot out of me. I focus on the fact that it is not a fatal disease and that other people have it much worse.
I’d love to hear more about the Mayo clinic and how the treatment protocol works.
Hi Lauren ,if they think you have trigeminal neuralgia,make sure he tells you ab out gamma knife or syber knife..I have a friend with trig.neura. she has been given the treatment,and is pain free.I was hoping that was the case for me,but unfortunatlyi have a different problem with my burning mouth..Trigeminal consists of one nerve.In my case i have it with nerves all over my face..Please look up syber knife or gamma knife..It is a great treatment..There is no cutting involved..The Dr’s put your head in a sort of helmet,and zap the nerve.Please mention this procedure to your Dr and let me know what you find out..Believe me when i say it works for people with trig.neuro..
Hi sheetrock, I have a form of trigeminal neuralgia which is termed atypical trigeminal neuralgia. Many of the treatment for tm don’t work don’t work for people with atypical neuralgia, such as those you mentioned. By the way, atypical facial pain and burning mouth syndrome seem to be used for the same condition. I wish I could undergo a procedure, but it looks like meds, dental care and yoga are the best treatments for me at this time. Thanks for the note.
Hi Laure,have you looked into the gamma knife or siber knife? Maybe you have,i know i was so dissapointed to find out i to was not able for this procedure..I have many nerves in my face i feel.It’s like hair falling down my face.I have both bms and a form of neuralgia…I’ll look forward to hearing from you..Take care.
I’ve been told that these won’t work for me either. Have you tried Klonipin and cymbalta, along with ambien and doxipin to sleep? These seem to work best for me, as long as I get enough sleep and do a lot of yoga. As someone mentioned, we all have to be careful we don’t have too high a dosage. Some people have reported that Lyrica is helpful, but of course, everyone seems to respond differently. I hope you are doing better.
Lauren,i had been on clonazepam for years.I also am currently being weened off cymbalta,as i feel it is not helping.I have recently been put on alprozalam,generic for zanax..I take 1mg twice p.day..I have also been on gabbapentin,and many other medications including seziure meds.(not helpful)I am so desperate for help,i went to three healing priests,and have blessed water from Lourdes in France..Clonazapam or zanax gives little relief,until it wears off..Today is a bad day,as our weather is very rainy and damp,so my mouth is raging with burn..As always i take pleasure intalking with you..Hope your having a good day..
I have had neuropathic burning mouth syndrome since Dec. 2010. Most Drs. I’ve seen have never heard of it. I am on gabapentin and Lyrica, they are not working. Does anyone know of a specific Dr. who treats this disorder. I am in pain 24 hrs. per day, it is very SEVERE pain. Need help and a support group. HELP, NANETTE
Nanette,i share your pain.I burn seven days a week.I am an 18yr sufferer.I have been to the best in Boston.I have taken some many meds,i lost count.I have had accupuncture,saw healing priests,i even have blessed from Lourdes in France.I believe because there is little funding for this condition,not much is studied.I to went to Tufts craniel pain clinic in Boston,and i think my Dr never saw a patient with this condition..Its’trial and error..I wish you well.One day without pain is a blessed day..I’ll pray for all of us who suffer from this..God Bless..
Sheetrock, I’m sorry to hear that you’ve not gotten significant relief from these meds. If you don’t mind sharing, what dosage of Clonazapam are you taking?
My doctor just told me to start taking it in a form that dissolves under the tongue.
Are you sleeping okay? Edluar dissolves under the tongue as well, and I have found it to be helpful since I wasn’t really sleeping until I went on this med. Best wishes for finding some help. How about meditation or yoga? It helps me stay focused on something other than the pain.
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