The Pity Party – Burning Mouth Syndrome

Woman Crying

Image courtesy of holohololand at FreeDigitalPhotos.net

NOTE: Although this post will remain on Kali’s OQM Musings, it has been reproduced and future BMS posts will appear on A Burning Journey. Please check it out if you are interested in more about Burning Mouth Syndrome.

I have been suffering from Burning Mouth Syndrome for nearly six and a half years now.

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.

Yesterday, I got a new medicine from my neurologist called Oxtellar XR.  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. I will ramp up gradually and see if I can tolerate it.  Side effects include 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 will monitor with blood tests), everything I take has those side effects.  They are “old hat” to me now.

Our goal in adding this med is to calm the misfiring nerves that cause the burning and tingling sensations in my mouth.  If we can get the nerves to rest, it may help with the healing and have the added benefit of symptom relief.

I can only hope and pray.

And I guess that is what drags me out of the pity party and back into my busy, productive life.

Hope is a powerful thing, probably even more powerful than medicines, and prayer has always been my form of meditation.

Wish me luck!

December 2014 update:

The Oxtellar XR did not seem to help and so under my doctor’s instructions, I ramped down the dosage gradually and discontinued it.  I felt no difference whatsoever in my BMS pain, so I guess that proves it was having no effect.

One more med checked off the list, and still, the best is my old standby, Klonopin/Clonazepam. It takes the edge off the burning better than anything else on the laundry list of meds I have tried.

2 thoughts on “The Pity Party – Burning Mouth Syndrome

    • Gwen,
      New BMS sufferers often spend years in what I think of as the “thrashing stage.” I spent over two years there, shuffling along to specialist after specialist as we ruled out EVERYTHING else! My family doctor was very helpful and even researched with me to find the latest studies and suggestions for meds to throw at this. My present neurologist put it best. “In medicine, we always rule out the horses before we start looking at the zebras, but occasionally we get a giraffe.” He put my BMS in his list of the top five toughest neurological cases he has come across. Yay?
      Bottom line, he listened, did not attribute my symptoms to either my psychological state or menopause status, and was willing to think outside the box.
      Am I cured? No. But I am managing this the best I have so far, and that is something. Keep looking for a good doctor who will listen and the best are frankly those who have seen BMS before. You don’t have time or energy to keep educating medical professionals, one after another, and yet that is what many of us seem to do. Good luck, and I hope you get your diagnosis and coping strategies and meds that help you!
      Kali’

      Like

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