I had my yearly sit down with my Neurologist yesterday and after discussing my migraine treatment with Aimovig (100% effective, BTW, but getting very pricey with my husband’s new insurance.), we moved on to Burning Mouth Syndrome.
He asked how my pain was, and I said, “The same as usual. I achieve tolerable levels with 1 mg of Clonazepam/Klonopin ODT spread between two doses, and if I have a flare, I take an extra .50 mg to deal with that and try to get a nap.” He shook his head and said, “I have reviewed your file and you have tried just about everything out there, but there is one that I noted you haven’t tried and I think it might help. It went generic in 2006 so it isn’t outrageously expensive and you can safely try a low dose with your present meds and see if it has a good effect. I would like to get you out of pain if it is at all possible.”
Well, to be frank, this is what you want to hear from your specialist. I said I had some questions about other treatments before I jumped into another drug tryout and he sat back and listened intently.
As many of us do, I haunt the online forums looking for new information or even unusual coping strategies for Burning Mouth Syndrome. Interested in learning more about this mysterious chronic oral pain? Check out the BMS Support Website.
As I read the entries, questions, and answers, I realize that many people who are looking for Burning Mouth Syndrome support are not reporting its symptoms. Often, they are reporting much more worrisome symptoms like sores and lesions, extremely dry and cracked tongues, and other varied complaints regarding other parts of their bodies. I find myself thinking over and over, “That is not primary BMS. They need a second opinion and to investigate other underlying disorders.”
You see, primary BMS is invisible. I am not kidding! If a doctor (and believe me, I have had quite a few) looks into my mouth and throat even when I am burning most intensely, they will see nothing unusual. That is a hallmark of this syndrome and if you have visible symptoms, please seek a different diagnosis. It may be another condition that has a cure or medicines that can better treat your symptoms.
Wouldn’t that be great?
The other issue that has been floating around for ages but has gained traction as states have legalized marijuana for medical reasons or in general, is the question, “Could cannabis or CBD oil help with Burning Mouth?”Continue reading →