I have been keeping all of you in the loop as I have been combining a dosage of Clonazepam ODT with a dose of Cymbalta each day. The good news is that it is continuing to work for my primary BMS/BMD (Burning Mouth Syndrome/Burning Mouth Disorder)
I consistently have some tingling in my tongue, particularly in the front third, but it is just that—a tingle. This combination of medicines has greatly lessened the fierce burning I have dealt with over the past seventeen years (yes, May 2025 will be the 17th anniversary!).
Some may say, “Doesn’t that mean you are cured?”
No. It means I have found a combination of medicines and coping strategies that are allowing me to live a nearly normal life. That is a fabulous thing, but it is not a cure.
If you have read some of this blog, you know what a slog it was to get here and that I do not take it for granted. There have been other medications that helped until they didn’t, and I just hope this is not one of those. However, for us, there is no guarantee.
I have been hoping that the increased numbers of us as we age, the awareness we try to bring to this disorder, and websites like BMS Support and Stuff That Works would spark some funding for research but to be frank, I haven’t seen evidence of much movement.
This disorder is so individual and often people who have it don’t identify it and others mistakenly identify something completely different as BMS/BMD. Confusion abounds and that is generally not a fruitful environment for research.
What can we do?
As I talked with my Neurologist at my last yearly check-up, I realized again that the more we educate ourselves about our disorder and the clearer we can be about our symptoms and the research we have read, the more we can help them help us. Perhaps someday we will have a foundation that can sponsor research. Perhaps someday someone with power, money, or celebrity will suffer from this and decide to make something happen.
We can hope.
Good luck to you out there and my prayer is that this is the year you find something that helps YOU.
A Burning Journey 
I as well use Cymbalta but now up to 90 mg and Clonazepam.
The burning is less and some days nonexistent.
Thank you for this post. 15 years now for me. Am guessing I will always have BMS.
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Catherine,
I am so glad you are getting relief! I am at 40mg of Cymbalta and experiencing the same kind of relief. I am afraid you may be right and we will always have this disorder, but like many other neurological disorders with no cure, it is helped by some treatments and unlike so many others, it is not fatal or degenerative. I guess we take our blessings where we find them, right? Best wishes for continued success with your meds and keep in touch!
Kalí
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I’m a 32-year-old male from Scotland who has suffered from BMS since March 2019. I’ve followed your blog since then, and I’ve found the information invaluable. A combination of nortriptyline and clonazepam (and possibly time) has helped me greatly, but quite frankly, when I first started to experience symptoms, they were so intense that I was suicidal. I am a teacher, so the pain of talking does affect me daily. Kings College London have carried out some research on BMS/BMD. Here is a link to a lecture on the disorder by Prof. Tara Renton, which I found useful: https://orofacialpain.org.uk/topic/educational-video-bms/. Many thanks for your blog posts. I’m sure you’re helping more people than you know.
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Ryan,
Thank you so much for your kind words and for sharing this link with me. I will pass it on to my partner in the BMS Support website for possible inclusion in the Research and Videos of the site. I find the bifurcation into BMD and BMS very interesting since they have been used interchangeably here and had given the impression it was simply a name change. Those who take the time to listen to the orofacial.org video will see the difference. I am so glad you found something that could help relieve your pain. If you have read my blogs at the beginning, you know that I felt the same after a few years of unrelenting pain and no relief. I was lucky and had loving people around me who supported my reaching for help to my doctor, and avoided that terrible temptation to end my life, but I will be frank that the thought did occur again occasionally after so many years, so many tests, so many meds, and so many coping strategies had failed me. Again, I reached out for help and talked with a counselor who helped a great deal. We just have to keep encouraging our fellow BMS/BMD sufferers not to give up. There may be more help around the bend. I just listened to a podcast about chronic pain in America and the narrator had some hopeful news about medicines that are in process. You can hear this podcast at https://www.nytimes.com/2025/02/02/podcasts/the-daily/chronic-pain.html You may have to do a search if the site blocks you for security reasons. Good luck to you and keep in touch!
Kalí
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