Tag Archives: Migraines

Not So Sweet Sixteen with Burning Mouth

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Every year in May now, I join Great Strides for Cystic Fibrosis, fundraising and supporting my oldest grandson in his fight with CF.

I celebrate Mother’s Day with my family…

And I mark off yet another year of Burning Mouth Syndrome/Disorder. This year marks the sixteenth anniversary and the beginning of the seventeenth year because there is no cure or even a reliable treatment in sight.

Sounds a bit melodramatic, doesn’t it? Believe me, if you felt what we feel every single day, you might slip a bit into the dramatic side yourself!

I have described Burning Mouth Syndrome/Disorder in this blog several times over the years, so I won’t make you read that again, but you can definitely find the definition here in prior posts.

Today I made my yearly pilgrimage to the Neurologist to check in, renew my Aimovig prescription (For migraines – VERY effective), renew my Clonazepam ODT prescription (helps me deal with the daily burn), and to talk about any other options that may have come up in the past year.

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Why You Should Do Yearly Checkups – Burning Mouth

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Photo by CanstockPhoto-Ankabala

Yesterday, I spent some quality time with my Neurologist at my yearly checkup. We discussed my medicines (Effexor XR and Clonazepam ODT) and discussed how the mix had changed and whether I should continue on them now that I have begun my sixteenth year with this disorder.

Our consensus together was yes. Effexor XR has lessened my need for the Clonazepam ODT with minimal side effects at the dose I am taking. I start tingling within an hour after breakfast and that sensation increases in the normal cycle of primary BMS until late afternoon/evening when I take one low dose of Clonazepam ODT.

This serves two purposes. It interrupts the cycle of intense tingling so I get through my evening when it would usually be the worst, and it allows me to fall asleep easily and quickly. Sleep is painless for primary BMS sufferers and my body gets the rest it needs. The more rested and hydrated I am, the less pain and tingle I experience.

All of this routine can be completely upended during a flare (You folks with BMS know what I am talking about!), and I have the go-ahead from my Neurologist to increase my Clonazepam ODT dosage up to 2 milligrams if necessary. Even my worst flares have not required that much Clonazepam, but it is nice to know it would be okay if it did.

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