I have gradually synced my neurologist appointments with my eleven anniversaries of BMS membership.
Each Mother’s Day ticks off another year with Burning Mouth Syndrome and I once again experience the joy of celebrating those lovely young women who are my daughters with the sadness that comes with another year of no cure in sight.
I saw my neurologist this week, and there was really nothing new to try so I will continue with my Klonopin/Clonazepam ODT and will keep dealing with the drowsiness side effect it brings.
But no pity party for me this year. Instead, I am focusing on the pain in my life that has been relieved successfully (Migraines practically cured by Aimovig), and some recent studies that indicate that a few researchers around the world are looking at our mysterious syndrome and finding some clues. The Burning Mouth Syndrome Support website just posted a link to a recent article from Scientific Reports titled “Proteomic profiling of whole-saliva reveals a correlation between Burning Mouth Syndrome and the neurotrophin signaling pathway.”
That’s a mouthful, isn’t it? You can read the entire report, along with many other articles, study reports, and abstracts at BMS-Research.
The scientific report article is dense, full of med-talk, science-talk, and many other things that sail over the heads of non-professionals but here is the main idea. Guy Krief, Yaron Haviv, Omer Deutsch, Naama Keshet, Galit Almoznino, Batia Zacks, Aaron Palmon, & Doron J.Aframian wanted to do profiling and bioinformatic analyses of whole-saliva (WS) from BMS patients compared to WS from healthy individuals.
From the report: “In conclusion, proteomic and bioinformatic approaches were used to examine WS from healthy individuals and those with BMS. The proteomic profile of WS from BMS patients has distinctive characteristics. Comparison to healthy controls revealed over 250 up-regulated and unique proteins in BMS. Examination of these proteins using several bioinformatic tools highlighted links to biological mechanisms including the neurotrophin signaling pathway. Preliminary validations showed the same pattern in individual samples and reinforced the correlation between BMS and the neurotrophin signaling pathway. Based on our findings, we suggest that an increase in p75NTR receptor activity, which mediates neural apoptosis may be involved in BMS, and may be connected to alterations in the dopamine pathway. Reduced concentrations of epithelial and sub-papillary nerve fibers among BMS patients have been observed. However, to the best of our knowledge, this is the first study with proteomic evidence of increased neural apoptosis (programmed cell death) in BMS patients via altered expression of proteins in the neurotrophin signaling pathway. Further research is necessary to fully understand the mechanisms, and to determine whether BMS is an idiopathic neuropathic disease associated with apoptosis.”
This suggestion is important because it finds that there is a physiological difference in BMS sufferers and they suspect that they have found the source of that difference. Whether this research will ultimately show that BMS causes the difference or whether the difference causes BMS is yet to be known, but our hope in the Burning Mouth Syndrome community is that it will lead first to a test for diagnosis and eventually to a therapy or medicine that may interrupt the increase in receptor activity or decrease the amount of apoptosis.
It all seems to take so much time.
Meanwhile, continue to have hope, use your coping strategies and/or medicines, and enjoy your life as much as possible.
As for me, I will be telling my daughters how much I love them and how thankful I am for this year we have had together.
A Burning Journey 
I was recently seen at Mayo Clinic For BMS. This is the only thing I have ever tried that has had a true impact. I have also been using Klonopin for several years at bedtime.
Capsaicin (or Tabasco Sauce) mixed with 4 tablespoons of tap water. Start slowly, with 2-3 drops. Swish and spit. 3 times a day. The capsaicin in the Tabasco blocks the nerves to the tongue and mouth.
Increase the Tabasco every few days, one drop at a time. It’s not perfect but any relief is welcomed. And it’s all natural.
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Barb,
I am glad you have found a coping strategy that is working for you! The capsaicin treatment is one of the first that many try (I did, too) because it is natural, inexpensive, and the burning often distracts BMS sufferers for a time. I have not heard of many people finding it effective on a long term basis, but my philosophy is to enjoy any coping strategy while it works. Regarding the Klonopin, if you were taking it at bedtime, that means that its most effective blood levels were being reached while you were sleeping. BMS sufferers usually do not burn when they are sleeping, so that med may have been at least partially wasted. Just a thought if you ever need to go back to it. Did Mayo give you any new information or data on what causes BMS or what could potentially cure it?
Kali’
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There is no “cure”. It’s a chronic neurological condition. The capsaicin actually blocks nerve sensations. That’s why there is capsaicin ointment. It doesn’t just make your mouth burn. If used properly and consistently along with other neurological medications like Gabapentin or Amitriptyline. It is caused by nerves in the mouth and especially the tongue being neurologically firing at all times. If this were happening in your back for instance, they pain management doctor would give spinal blocks until the nerves settle. That can’t be done in your mouth. The NIH doesn’t currently have any trials for BMS.
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Barb,
Yes we know there is no cure at this point but research is being done (if minimally and slowly) that may discover easier diagnosis tools and perhaps a treatment. We live in hope. You may want to check out the Facebook Burning Mouth Support Group if you aren’t already a member. It is private and you are welcome to have discussions about the capsaicin with them.
Best of luck to you!
Kali
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