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Burning Mouth Syndrome. I have it very severe.
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
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Sheetrock, I replied by email. I hope it reaches you. If not, let me know and I'll write another response.
take care.
Hello Sheetrock, Sorry it has taken me so long to reply as I have been traveling. I appreciate your detailed response to these issues. I have migraines which started after the dental incident that triggered by BMS and Atypical trigeminal neuroglia. I have a botox shot about every three months which has continued for about four years from a Pain Medical doctor. As long as he hits the right areas in the neck and forehead, they can be very helpful. I believe that when the migraines are affected positively by the shot, it reduces the amount of BMS pain. I also have TMJ disorder and sinus issues. As my pain doctor says (jokingly), “They like to play with each other. “ I am working with a dentist for appliances which take the pressure off my gums. I wonder if this is what was referred to as “bite plates” by another member of our group. I also experience pain on top of my head and through sides of the head and ear. I did have a scan and this condition is not the result of a tumor or other similar issue. I think it has to do with the Trigeminal Neuralgia. I believe I have what is known by some as Atypical Trigeminal Neuralgia because the pain is a throbbing, burning, aching feeling. Besides clonozapam, Cymbalta, and a Melatoic for sleep if needed. I also use Tumeric which I feel helps. I think it’s important to look at these issues holistically, since they seem to interact with other. At least, that is my experience. Let’s stay in touch. Stay cool!
Sorry sheetrock, I missed this message (see below). I stopped the shots in the neck because the doctor did not give me any data that indicated that they would help. I only had two. Then the doctor moved to another practice and wanted to try it again. I said "NO." I overheard a nurse tell a patient, "You can always say, "No." Some doctors don't like that, but I try to be a partner in the process. I research procedures and drugs, and sometimes I ask them their opinion if I've heard something good about the drug. I was the person who asked to have Botox for the migraines and it has helped. He then wanted me to use a device that had to be attached by threading it to my face that looked like a big mushroom. He had no information that it would help my form of TN or BMS. So, again I said "No, thank you." I researched it and again found no evidence it would work for me. My understanding is that Type 2 or Atypical TN cannot be helped by shots, Gamma Knife or other types of procedures. Classic TN is sometimes helped by surgery, but this can be a dangerous step. Bottom line: be careful. I believe nearly all doctors really want to help their patients but there is little research to help them or us.
Good luck and keep me posted.
Hi,unfortunatly it did not reach me.Please try again
I look forward to talking with you.
God Bless.
Glad you did your reasearch.
Dont ever get talked into Gamma knife.
You will be worse than you are now..
I hot shots once a month for almost a year.
Nothing helps..
Hello Sheetrock, I've had trouble with my computer so can't find the email. Sorry! Hope you are okay.
Sheetrock, all I can say is that Gamma Knife might work for some, but not for BMS. It's so important that people get the right diagnosis.
But, that is such a difficult journey.
Have you tried the very thin bite plates during the day-seems to keep nerves from firing at each .
You are so right.Gamma knife works well for trigeminal neuraglia.It infuriates bms.
Drs wont touch someone with both.
Hi Connie,
I know I've asked you this before, but I am having no success after seeing numerous dentists about these "bite plates." They have no idea what I am talking about and look at me like I have 3 heads. Is there any way the dentist who provides you with these would be able to share with you with specifics (maybe in "dentist talk,"- like the exact material he uses and how exactly they are placed, etc. so that I could better explain them to my present dentist? This would be of immense help. I am not doing well and finding foods I could eat a year ago, burn my mouth badly now. Drs. here keep wanting me to see shrinks (whom I've seen plenty of to no avail). I am so tired of them not believing that there are other people with this condition who are actually finding some relief without taking a pill.
Thanks in advance for whatever you can do. Blessings to you all- I so admire how you hang in there and are always willing to share.
Maggie45