h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

I'd be very interested to hear from anyone who suffers from Burning Mouth Syndrome after reading an article recently on this site. I am a sufferer (2 yrs) and have found there has been research on it but coming up with 'why' is another matter. I'd be very interested to know how it affects you and if you have had any successful treatment as it's driving me mad!
Thankyou.
Cutrunner.

I too suffer from Burning Mouth Syndrome, I have had it for 5 years and am taking Amyltriptylene 25mg, not sure if it helps the condition but it does help me sleep which can be a problem as the condition gets worse later in the day. I find that the only time the pain goes away is when I eat, so consequently I chew gum all the time, although by the end of the day it does not work as well.

I have been suffering for eighteen months and also find chewing gum helps. Alpha lipioc acid has helped in some cases but not me. I have been taking morphine for about 12 months but don't advise this route because of bad withdrawal symptons. I need to be in touch with a person with the same promblem, who understands how I feel.
jeanyoung

My absolute and profound sympathies to all of you. When my wife's uncle called my wife's sister and mentioned that his wife was suffering from an unnamed malady, my sister-in-law suggested that my wife and I might be able to help discover what could be done (because we had 'the internet').

In less than forty minutes, we had printed off a couple of dozen pages and were able to send them to Atlanta Georgia, USA. They took them to the hospital, which was flabbergasted that they'd never even heard of it. They were asked where they got the materials and they mentioned that we found it on the internet. (I think we made some converts that day!)

Please, do not settle for symptomatic relief. Work is constantly being performed to discover true cures. The info that we sent my wife's aunt completely cured her. Something similar must also be useful to each of you.

Keep searching. Tell your doctors of all you find. Maybe even contact the Atlanta General in Atlanta Georgia to ask what they suggest. Just don't give up. Life will get better and the misery can be stopped.

The best of luck to all of you!

Can you please give me more information on the hospital address in Atlanta Georgia. Thanks for your help.
jeanyoung.

I'll certainly try!

We communicated with them through snail mail, so I'll ask my sister-in-law for their phone number and ask for more details on where the aunt was treated.

Regards,

Thanks for your help.
I am English but am desperate for any help I can get.
Regards
jeanyoung

I finally have some information on the family member who had the syndrome. All she can remember is that the clinic was called the Emory Clinic and that it was in Atlanta, Georgia USA.

Unfortunately, there seem to be several of them, but they are pretty tightly grouped so my suspicion would be that they are all linked up somehow.

She could no longer remember the doctor's name, and have since moved.

I would certainly try Glycol rinses; and, failing success there, the hot sauce rinses (probably not full strength) to see if they help. I asked if they still had the information, but she left it with the clinic years ago.

It's too many computeres back for me to think I might have it on a hard-drive somewhere.

The absolute best of luck, and keep searching for those new treatments!

Thanks for your help and the information on the Hospital.

I will look into the Glycol and hot sauces and contact the hospital group you mentioned.

Our Doctors do not seem to have any ideas on this condition and are not helpful in providing suggestions for treatments.

Thanks again.

jeanyoung

Jean:

I was beginning to think that the product that helped my wife's aunt was clonazepam, but I've read of a woman who had switched from alprazolam for her anxiety to clonazepam, and then began to suffer symptoms.

Here are some additional sources that I hope prove helpful to you and other sufferers.

Some, like this first one, speak of recently emerging information on nerve damage as a cause:
http://crobm.iadrjournals.org/cgi/content/abstract/14/4/275?maxtoshow=&HITS=10&hits=10&RESULTFORMAT=&searchid=1&FIRSTINDEX=0&minscore=5000&resourcetype=HWCIT

http://www.mayoclinic.com/health/burning-mouth-syndrome/DS00462/DSECTION=6

http://www.dentalgentlecare.com/burning_mouth_syndrome.htm

http://www.case.edu/pubaff/univcomm/mouthbrn.htm

http://findarticles.com/p/articles/mi_m0FDN/is_5_7/ai_94159031

http://www.uchc.edu/uconntasteandsmell/b.html
Burning mouth patients, including those with Sjogren's, sometimes have an oral candidal (thrush) infection that is not readily apparent on examination. Because the treatment is benign (Nystatin vaginal troches slowly dissolved in the mouth, one troche four times a day), we recommend a two week treatment for possible candidiasis. (We use vaginal troches because there is no sugar in them and patients with dry mouth are prone to more cavities in their teeth if they use a sugar-containing troche). If the oral burning improves, we treat for an additional 6 weeks. Some patients require a full three months of treatment to eradicate the infection, especially if their mouths are dry. During treatment, it is important to disinfect any dentures simultaneously so that the infection is not reintroduced into the mouth. Your dentist will provide you with disinfectant recommendations for your dentures. Your doctor can obtain an oral candidal culture prior to treatment with Nystatin, but our recommendation is to treat regardless of culture results because we have seen improvement even when cultures are negative.

In addition to the above, we screen for nutritional deficiencies (B1, B2, B6, B12, folic acid & iron) and diabetes mellitus in all patients, because some of our patients have low vitamin and/or mineral test results, and elevated serum glucoses. Both nutritional deficiencies and diabetes have been reported to be associated with oral burning in other studies.

Lastly, if evaluation to this point is unrevealing, we suggest an MRI scan of the head, to make certain that there is nothing in the brain causing the burning sensations. For example it is possible that a small "stroke" in a specific area can cause oral burning symptoms.

Once again thank you for the information.
I am looking at the various web sites you gave me and I will let you know of any developments. The brain scan I have already had done and there was no promblem there. I think my promblem started when I had some dental work done.
Regards
jeanyoung.

Jean:

You have probably noted on those sites that dental work is occasionally mentioned. It makes one wonder if 'the needle' can hit a nerve and bring on the problem?

Good Luck, and yes do keep me informed!

I have been on the web sites you mentioned and there were three things I have not tried.
Firstly baking soda in a litre of water and drink it. After a couple of days the burning got worse so I stopped.
The creams or lozenges containing capsaicin are not available in this country.
Last of all the clonazepan your wifes aunt took. I am worried about side effects, so I must make another trip to the doctors for his advice.
I must find something soon its distroying my life.
Regards
jeanyoung

MedicineNet.com [http://www.medterms.com/script/main/art.asp?articlekey=33741]
had this:
**********************************
Definition of Capsaicin

Capsaicin: A component of certain plants, including cayenne and red pepper, used topically to relieve minor arthritis pain and nerve pain. Capsaicin is in creams such as Arthricare and Zostrix that are applied to the skin. It appears to work by reducing a chemical substance found at nerve endings that is involved in transmitting pain signals to the brain.
**********************************
It is also a common ingredient in hot sauces. I guess that this is why some sites suggest a rinse of diluted hot sauce, to lower the ability of the nerve endings to transmit pain signals.

It doesn't sound like an actual cure, but you could try starting VERY diluted and work up to a less diluted strength solution, to see if it can help you get by until you find someone with a more permanent cure.

The best of luck to you in dealing with this vexing problem.

Sorry about the delay in replying I have not been well.
Once again thankyou for the information you sent on Capsaicin and the web site, I will look into it.
I have found another type of treatment called Bioelectric Therapy I am not sure how it works but I have an appointment to see the doctor next week perhaps this will help me.
Regards
jeanyoung.

The absolute best of luck to you!

Remember that, should it prove helpful, it would be a good idea to write about the treatment on H2G2. You could even update my original entry with the new info!!

I went to the doctors last week and asked about Bioelectric therapy
but he said that he knew nothing about it, but if I could search the net for someone who deals with this treatment, then he would give me a referal letter to take with me. The treatment is not on our Nationaal Health Service so to go private it will be too expensive for me.
He thinks I could have oral thrush and he has given Sporanox to try, I am not very hopeful.
Another tablet he has given me to try is Dosulepin it belongs to the group of medicines called tricyclic antidepressants, I take one 25mg at night.
I will keep in touch.
Regards,
jean young.

Jean:

I can only assume that you've shared all your previous research with the doctor, and that he's taken it all into consideration as well.

I'm very pleased to hear that he has started you on a course of therapy, and that he feels that there is a chance of success. Still, he must have told you that oral thrush normally causes creamy white lesions on the tongue and/or walls of the mouth.

If this is one of your symptoms, you would be one of the rare ones. It is normally in babies, the elderly, people using corticosteroids, or those with immune disorders. BMS is more likely to be found in post-menapausal women.

Happily, it is often treated with rinses of 50/50 water and vinegar (Oral Thrush is a fungal infection). You probably find it on mayoclinic.com

I'm not sure that I remember everything that you've mentioned, but the Italians have had some recent success treating BMS with Alpha-Lipoic Acid (Thioctic Acid). If this treatment doesn't help, you may want to ask your doctor about it.

Either way, I'm keeping my fingers crossed.

My doctor seems very unhelpful when it come to any research, it is left to me to find the information. The Sporanox for thrush did nothing for me. I took the 7 day course so obviously it was not that causing the problem.
Within 8 days the Dosulepin tablets gave me fit like symptons, shaking of my legs and arms. so I had to stop them. I have tried Alpha lipioc acid earlier in the year June I think, just made it worse.
At the moment I am back on morphine because the pain seeems to have increased, antidepression tablets, and sleeping tablets to help me at night.
I cannot understand why a simple thing like a damaged nerve in my mouth is so hard to put right.
Many thanks for keeping in touch, I feel very lonely because people just dont understand.
Regards,
jeanyoung.

You deserve all the sympathy that a non-sociopath can muster. If anyone seems unable to comprehend your disorder or your agony, please point them toward the h2g2 entry, or any health site you've found that's done an adequate job of explaining it.

Or, just tell them it's like having a root canal performed, 24 hours a day, every day. Or, offer them a bottle of hot sauce and suggest they swish it around their mouth and have a good swallow, every half hour.

Unforeseen and unusual reactions to medications are always unfortunate. It goes to show how dissimilar we can all be while being 'nearly' 100% the same in most ways.

I'd just heard of a young woman who has a rogue nerve in her mouth, and went in for a root canal. They could not find the nerve to deaden it, and she had to bare-knuckle it through the procedure.

I have a new potential source for medical information. I'll start asking the questions about BMS on your behalf. I'll let you in on anything promising that results.

I've also been wondering if their might not be a homeopathic treatment that I've missed. If there is, I hope it involves Mojitos. The combination of rum and mint sounds promising to me.

All my best,