January 27 – The Pity Party – Burning Mouth Syndrome

by Kali’ P. Rourke

holohololand

I have been suffering with Burning Mouth Syndrome for nearly six and a half years now. Interested in learning more about this mystery disease?

I would tell you to Google “Burning Mouth Syndrome,” but I know what mess would appear. Mayo Clinic does a fairly good overview at http://mayocl.in/1mRRGuu.

I suspect my burning was caused by dental work, but I may never know the cause. Every once in a while, what my Neurologist euphemistically refers to as “the persistence of it” overwhelms me and I have a brief, but intense pity party.

Instead of focusing on the optimistic side of the coin:

It isn’t fatal
At least it isn’t cancer
My family is supportive
There are drugs that help
I have developed decent coping strategies

I occasionally dip into the pessimistic side:

It hurts nearly every day
The drug helps but makes me drowsy and aimless
There is no rhyme or reason to the good days or the bad days
Even on good days, my tongue tingles all of the time
I think, deep down, I am angry
I fear–It. Will. Never. End.

Recently, I got a new medicine from my neurologist. It is used at a fairly low dose to control errant nerve activity and at much higher doses for patients who are dealing with seizures. Under his direction, I ramped up my dosage gradually to see if I could tolerate it. Side effects included possible lowering of blood sodium, drowsiness and suicidal thoughts.

You would think those things would scare me, but with exception of the sodium levels (which we monitored with blood tests), anything I take has those side effects, and more. They are “old hat” to me now.

Our goal in adding this medicine was to calm the misfiring nerves that cause the burning and tingling sensations in my mouth. If we could get the nerves to rest, it may help with the healing and have the added benefit of symptom relief. I could only hope.

Hope is a powerful thing, probably even more powerful than medicines.

Unfortunately this hope did not pan out, and I have added one more unsuccessful medication to my ever-growing list. I am fortunate to have one medicine that does control the pain to an endurable level and I will keep looking.

And every so often, I will pause, indulge in a brief pity party and then move on.

Kali’ is an avid volunteer, a Mentor with Seedling Foundation, and an Impact Austin philanthropist. In her spare time, she does social media for nonprofits, blogs and is also a singer/songwriter!

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6 responses to “January 27 – The Pity Party – Burning Mouth Syndrome

  1. Hi – I’m a 36 year old guy who has had burning mouth syndrome for about 5 years. No idea what brought it on. I thought at one time it was reflux, had reflux surgery which of course didn’t help. Tried tons of medications through neurologist. The best one I have tried is duloxetine (cymbalta). I even get some relief with a very low dose of 20mg. The typical side effects of all the meds I’ve tried (including seizure meds, and antidepressants which serve the same nerve-quieting function) of sluggishness, aren’t as bad with duloxetine esp. at 20 or 30mg a day. If you haven’t tried that one yet, I’d definitely recommend it. The recommended dosage is 60mg a day, but you can start at 20 or 30 and go up from there. Right now I’m not taking anything for my BMS, and it’s livable. But if it ever bothered me again enough to tolerate side effects of meds, I wouldn’t hesitate to get back on the duloxetine.

  2. Hi, Doguicar!
    Thanks for the recommendation, but I was prescribed Cymbalta/Duloxetine a couple of years back by a pain management specialist. He evidently hadn’t reviewed my chart very well, because the first time my chronic migraines hit, I took my Imitrex/Sumatriptan and had the first bad med interaction event ever. It was very scary, and when I checked a drug interaction site, it said very clearly that Cymbalta interacted badly with migraine medications. Needless to say, I discontinued Cymbalta immediately and now check each and every med for interactions before I try them.
    The med that helps me the most, out of the laundry list I have tried, is Klonopin/Clonazepam. At a very low dose of .50-.75mg at noon (my neurologist allows me to go up to 2mg per day, but that hasn’t been necessary), I experience enough relief to get through the most intense burning of the late afternoon and evening. I don’t know if you ever tried that, but it is the one that works for me.
    There are quite a few men out there suffering from BMS, although it is still primarily a women’s ailment statistically. However, the presence of these men does make you question the hormonal/menopause category that sufferers often find themselves assigned to by doctors. I too, had GERD ruled out definitively, after being prescribed three different acid blockers with no results.
    Good luck to you, and hope you experience full remission someday soon!
    Kali’

  3. I had a son who dealt with chronic pain of any ilk for years…..The saga is heart wrenching for all concerned. Have you tried acupuncture and/or Healing Touch/Reiki? Also check out some suggestions that Edgar Cayce may recommend. That is the A.R.E. which is located in Virginia Beach, Virginia.

    • I am sorry to hear about your son, and hope he is better now.
      Yes, I have had acupuncture regularly for about 4 years now (even with a BMS acupuncture protocol from Italy), and indulge myself with regular visits to a talented massage therapist, as well. I have tried all of the herbs, supplements and protocols you have probably heard of and still have found nothing that directly helps other than Klonopin/Clonazepam.

  4. Linda anderson

    I suffer with this maddening condition and it’s been a constant companion for several years now…..chewing gum andi anxiety med offers the only relief but suffering this affliction causes depression.There needs to be an answer to this horrible medical condition.I want permanent relief…I only hope and pray it goes away someday ….It appeared suddenly and I pray it leaves me the same way.I was told by my dentist that mercury in fillings won’t cause this …but…I wonder……..

    • Hi Linda,
      Unfortunately, no definitive link has been found between mercury in fillings and BMS. (My amalgam fillings were replaced with composite many years before the first bout with BMS) But there does seem to be an anecdotal link between dental procedures and the onset of BMS for some people. (me included!)
      I don’t know if we will ever have an answer, but I must tell you that my latest Neurologist took me to task for not taking an effective (therapeutic level) dose of Klonopin/Clonazepam and strongly advised me to take .5mg in the morning when the burning begins, and then a full 1mg at lunch or shortly thereafter. He also switched me to the dissolving wafers that you put under your tongue and they are MUCH more effective than the other form.
      It has been about 2 weeks now since I switched and although I do experience a bit more drowsiness in the afternoon (I combat this with green tea!), I can honestly say I am out of pain. I still get a little tingle in the tongue at times, but about 95% of my day is mine now. Will this work for you? I have no way of knowing, but do think about discussing it with your Neurologist. Everyone is different, but I am very grateful that I listened and trusted my Dr. because this is the first time in over 7 years that BMS is not the first thing on my mind. I don’t know if this is temporary or if it will last, but it is a joy not to burn and I will revel in it for as long as I can.

      Good luck to you!
      Kali’

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