The Journey Continues – Life With Burning Mouth

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The great news? The combination of 1 mg of Clonazepam ODT and 40mg of Duloxetine is still working. I am still experiencing a tingle of the tongue rather than burning, and it has been liberating.

The not-so-great news? I still have Burning Mouth Disorder, and there is no cure or even a definitive diagnostic test on the horizon. In nearly seventeen years of burning, the best we can hope for is remission. Still, the second best is a combination of medicines and coping strategies (Stay hydrated, my friends!) that allow us to function and avoid descending into depression.

We have talked about depression before and what a sneaky and destructive beast it can be. Please stay aware, and if you have people around you who care for you, ask them to be aware if your sleeping, eating, moods, or general behavior change dramatically. Sometimes those around us notice before we do because we are already in the woods.

If you haven’t seen a Neurologist, I encourage it. I find that of all the specialties out there, Neurologists are a bit more likely to have heard of or seen BMS/BMD and also seem more open to trying different therapies. Mine has had my migraines under control for over six years, and the current BMS/BMD therapy has been working for nearly a year now. Fingers crossed, right?

We all know from experience that medicines can stop helping, circumstances can change that cause flares and stress, and sometimes it can feel hopeless. Please hang on to hope and in the meantime, keep reading and researching, working with your doctor, and if you have the capability, reach out and help someone else in more need than you.

Volunteering and donating have changed my life in so many positive ways, and it is one of those special activities in life where everyone wins.

I am keeping good thoughts coming your way, and I hope you enjoy your Spring/Summer as much as you can.

5 thoughts on “The Journey Continues – Life With Burning Mouth”

  1. Thanks Kali. I also use both the meds you mention … as well as 200 mg. 3x daily of Gabapentin. As of late, I rarely experience even a tingle. For that I am grateful. Both my dentist and maxillofacial doctors are very aware of BMS. I completely understand the need for seeing a neurologist which would have been my path if not for the aforementioned doctors.

    Love the photo!!!

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  2. Hi Kali,

    I have been on Klonopin ODT for 4 years which is helping, but not bringing the pain level down enough. Started seeing a neurologist and started 30mg of Cymbalta (Duloxetin).

    How many weeks did it take before you had results? And did you go through any side effects that passed with time?

    I am only on day 13, but so far no help with the burning and on day 10 and started having some bad side effects of dizziness, fatigue, headaches, and nausea.

    Thanks,

    Stefanie

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    • Hi, Stefanie! Thanks for sharing and asking. You don’t mention what dosage of Klonopin ODT you are on, so can’t comment there. I started at 20 mg. on Cymbalta and ramped up to 40 mg. over time, so it took a couple of months to really see the difference. I have had no side effects that would keep me from continuing the treatment. An occasional headache but nothing chronic and definitely no dizziness or nausea. It may be that Cymbalta is just not right for you but I would give it a little more time if you can. There are other meds that are similar to Cymbalta and maybe it would be worth checking into that with your neurologist. Effexor XR worked great for me, but the side effects were not tolerable so Cymbalta was an alternative. Good luck, and keep in touch and let us know how you are doing! Kali

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      • Thanks for the reply Kali. I take 1mg ODT Klonopin at 10am, 2pm, and 6pm for a total of 3mg daily. There is an dental expert named Dr. Cioffi (google his video on vimeo or its on the facebook support group run by dennis) who I see and he put me on that which works, but just does not bring the pain down enough.

        Then I saw another BMS expert at dental clinic at the University of Florida Shands who explained that it usually takes a combination of another nerve related drug to bring the pain down so now I am seeing a neurologist.

        I just started week 3 of Cymbalta so I just need to be patient. The side effects did go away after a week. My Neuro said to give it 2 months and if its not helping he will increase the dosage. I plan to go slow if I have to increase and ask to go to 40mg next. I will keep you posted.

        Oh and I did try Effexor XR in the past and had terrible side effects and just could not tolerate it so I stopped it too soon to know if it would have helped. Patience is so hard when you are in pain every day, but going to be patient with the Cymbalta in hopes that is helps. thanks.

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