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I did not go because the practitioner requested $1500 in cash for the appointment. I’m desperate, but not stupid. Even though it might have helped, I wasn’t willing to risk that much on an unknown. I have a session pending with another person and it’s $150 for 2 hours. I will let you know how that goes. Meanwhile, I forge ahead trying to ignore the unrelenting prickle, burn and stinging. My prayer is that all of you who endure this wretched condition will find relief, or a way to cope until an effective treatment surfaces.
Hello, Fellow Afflicted-
I haven’t posted in quite some time, primarily because there has been no change in my status. I am into my 6th year with BMS, and so far no treatment has been effective. I have always put my lot in with Western Medicine, but desperation can drive us to us expand our comfort zones. I have an appointment next month with someone who practices Vibrational Therapy. It’s $$$ and a bit out there, and I’ve no idea what to expect, but it does seem to me there is an electrical component to my particular type of BMS. My mouth constantly feels like there is a current running through it, so I thought, “What the heck? I’ll try a different approach.” If anything comes of it, you’ll be the first people I tell.
Thank you for thinking about me! I am slogging through the days with the goal of keeping the discomfort tuned out. Like a computer program, it is always running in the background.. ( I call it BMS 3.0)… Anyway, I tried the Claritin as someone suggested, and have not noticed much of a difference yet. The Lidocaine gel is still the only thing that quells the fire, albeit temporarily. I have been wondering if anyone else has dreams about being in pain? Most sites describing BMS say the only relief sufferers experience comes during sleep. That is not the case for me. I often dream I am pulling glass shards of broken Christmas ornaments from my mouth, and upon waking realize the burning has intensified during the night . Despite all this nonsense, I still managed to live a blessed life. This website has become a source of comfort to me, and I am thankful we can share our experiences.
@Destinana: Your anguish is understandable. It seems every med, every remedy, every intervention disappoints. I was recently told by a practioner that some cases of BMS might be caused by dental galvanism, and it appeared my situation was one of them. A quick search of the term will result in a dead end — fake science. But I looked into the treatment anyway which was to have all your fillings replaced with nonconductive materials. Very costly if you have a metal-filled mouth, but desperation may ultimately drive BMS sufferers to it. I haven’t gone that route yet.
For the reflux, I read an article that recommended freezing a whole lemon then grating a tablespoon or two of it ( rind included) into boiling water and drinking like tea. Apparently reflux can be caused by not having enough of the right kind of acid in your system. Maybe this could help you. I have tried it, tastes good and doesn’t make anything worse….
Hi again, Lauren123, I am so glad to have found this site! You’re right in saying it’s a good place to share information for people with this miserable condition. No one else even faintly understands, not even the doctors I’ve consulted for evaluation and treatment. Most of them say they’ve never heard of it! Eventually we get forced down alternate paths in the hopes of finding something that works. My latest failed attempt was CBD oil— an outrageously expensive and useless product.
In answer to your question, yes, my gums burn all day, every day, but mostly on one side. My tongue is the worst, as it involves the entire thing. Occasionally my nostrils and lips get in on the action as well. I do not have sinus problems , or TMJ or any neuralgia that I know of. I was sorry to read of your multiple maladies. For me, the one odd thing that might be a clue is that I have sneezing jags multiple times per week. Once I start I sneeze anywhere from 20 to 45 times in a row. (Allergy testing was negative.)
So for now, I, as I’m sure you do, forge ahead, thankful to get through each night and hoping for distractions during the day. Try the lidocaine when it is at its most unbearable. I pray God will both comfort and heal you.
Hello, @lauren123 – the lidocaine is in a gel form. You swish with it, or swab it in your mouth. Because it is a prescription, it’s more potent than your basic OraGel. The numbing effect calms the fire and lasts a few hours . Although I’m very sorry to hear you can identify with me, it is certainly helpful to talk with others who grapple with this poorly understood syndrome. Perhaps collectively we can work out the puzzle. I hope you find some relief— my ENT was the one who prescribed the gel.