January 2022
My Journey with BMS began January 2020, I will never forget the acute pain and burning, the feeling of disappointment after being passed around from doctor to doctor over SIX times. Trying to explain this to the people I loved and cared for who just could not understand the depths of pain I was in 24 seven. A year ago today, after deciding I was not going to be done with this journey or let it defeat me, I decided to become my biggest advocate. I knew this was not right, I needed to start my own research, and with the help of the support of others going through my same pain, during my journey with the group on Facebook with Burning Mouth syndrome (BMS). I have met amazing people who helped me get to where I am today, started a blog documenting my journey as to hopefully help someone else, share information, and advocate against this debilitating syndrome.
I had watched the continuing education on YouTube from a dentist named Dr.Cioffi, he made perfect sense, he knew the syndrome, he explained the syndrome, and he helped in manage and treat patients with this syndrome. I was lucky enough to be taken under his wings and treated, and by the grace of God felt a sigh of relief. I had a doctor, someone who was listening, who had amazing bedside manner, and for the first time in over a year, the pain was never gone but I could tell in the first two weeks the treatment was helping. I had hope.
Fast forward a year later and I am pretty much at a peace I am content, my pain control is manageable and at times, not even noticeable. I have had to set a clock on my phone for reminders now to take my medication three times daily as I will sometimes forget. Those days are the best by far not going to lie 😉.
Due to certain circumstances I had to leave the practice of dr. Cioffi, I am in Texas he being in Florida, scared to go through this process all over again explain, the same thing over and over, scared of being just another waist of time, knowing that many doctors won’t listen or truly understand the need for the medication clonazepam, that in my opinion has been the only thing proven to help, but is on such high lock and key due to the drug class, understandable.
I had help and a referral from a fellow FB friend who helped me in Finding a new doctor, him listening to what I’m saying and hearing him say it is an actual syndrome and he believes me.
I took joy in listening to the new information I learned that doctors / dentist are now learning about the syndrome. Here was my previous experiences and new information I learned yesterday that may help someone else. I will go over all the things I have been through / are currently doing to help treat/ manage this STUPID syndrome 😊
While going over all my previous TX and current TX and questions I currently had and still wanting answers for, were as follows.
New information I learned: 🥳🔥
*In the last 10 years it is now a known fact true BMS is a Neuropathic pain. If you think about it it is not that long. There is still so much they are learning. It gives me hope knowing they are researching this.
*Stress is known to be a huge trigger for the pain / inflammation to the nerve pain. IT IS NOT THE PRIMAY CAUSE OF BMS! This is yet to be determined what is a primary cause.
*A DOCTOR at Texas A&M is currently researching this syndrome, doctors are now using a very cheap way to diagnose, to see if you have TRUE BMS. It was done to me today, by asking me to lean back as the doctor poured SPLEND PACKETS (yes Splenda) onto the tip of my tongue. The burning sensation immediately subsides. Not forever just long enough to take your mind off the pain, especially when it is at its worst. I LEARNED TODAY TO KEEP SPLENDA IN MY PURSE TO HELPL IN DESPERATE TIMES! LOL! I looked at the doctor and asked what that was, when he told me I was flabbergasted. The doctor at A&M learned this trick, they are teaching it a seminars for dentists/specialist. ** They can’t explain it other than the Splenda seems to help the taste buds focus its nerve sensation from the product in the Splenda packet.
Botox is a new form of TX, you need to go through it for 3- 4 times with a certain amounts of units each treatment. Directly into nerves on the tong.
*Do not use a tooth paste with LSL in it, I hope I am putting the correct initials (it’s the stuff that makes the toothpaste foam). Use holistic toothpaste burts bees and mother nature are good brands.
*For females it tends to be at its worst for us during our monthly menstruations, due the stress our bodies are undergoing throughout monthly cycle times. Which is now making complete sense, as I have always chalked mine up to hormonal issues, as the burning is at an all-time high each month during this time. Again, stress is he contributing factor on the body. IT IS SUGGESTED FEMALES TAKE AN IORN SUPPLEMENT DURING THE TIMETO HELP REPLINISH WHAT THE BODY IS LOSING TO HELP THE BOY MAINTAIN ITS HORMONAL LEVEL OF IORN…
*ZINC IS ANOTHER KNOWN DIETARY SUPPLEMENT KNOW TO HELP. Just a daily recommended dose nothing crazy.
*Therapy and stress management medication is highly recommended during this syndrome.
*Cymbalta is another new drug currently being introduced for treatment (not sure about this one)
*I am being fitted for a night mouth guard to help with scrapping and irritation to the tip of my tong where the sensation is while I sleep. Also, can use daily to help have a smooth surface against my tong. I used to buy wax for braces and apply it behind my lower teeth at night to help with rubbing of my tong.
Gabapentin only thing is this has to be in conjunction most times at higher doses along with colonzopam. Gabapentin was not for me!
What I have already tried:
*Capsasin 0.01% compounded liquid – THIS IS A HOT PEPPER it burns horribly, but they say doing it 2-3 times daily by swish and spitting it can possibly help train the nerve to retrigger its normal burning sensation or who knows fry the nerve completely in my opinion lol. IN MY OPINION JUST BY REGULAR TABASCOO, MUCH CHEAPER AND IS EXACT SAME THING…. Can dilute both these with water if it is too bad.
Gabapentin, Tabasco sauce, dexamethasone rinse, magic mouthwash, capsasin, ketaconazole, colonzopam, alpha lipoic acid, diet change, stopping all meds one at a time I had been on prior to onset, keep a journal of my worst days, all the labs 🥼 you could think of, six doctors, and all I can remember for now. 😅
Tried and currently using that work:
*Dexamethasone 0.05ml PO swish and spit as needed – it is known that steroids can reduce inflammation and burning. (This is what I use when it is at its worst and the clonazepam isn’t taking full effect.)
*Alpha lipoic acid three times daily at 200mg three times daily. This is a nerve dietary supplement.
*Clonazepam started at 0.25mg/tab melting on my tong, three times day melting on my tongue for 2 weeks, then titrated up to 0.5 mg three times daily, I have currently been on this for over a year. The doctor let me know that is prescribed for treatment is on lower does range that most patients don’t have side effects or if any withdrawals. I personally have not experienced this while on it. ONLY REAL RELIEF!!
Things that were recommended to stay away from:
*Coffee *foaming toothpaste *peppermints *cinnamon *spicy * citrus *alcohol *vape/smoking
REALLY ANYTHING FUN LOL!!!! I HAVE LOTS OF CHEAT ITEMS AT MY OWN RISK 😉
I hope you find this helpful and useful.
RELAX– DESTRESS- SELF CARE
One Breath at a Time, One day at a Time 