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.
We also discussed my migraines, Aimovig, and the amazing help that drug has been for me. I have not had a migraine now in years! I had a supplemental prescription for Sumatriptan (Imitrex) that he has kept current in case of breakthrough migraines, but there just haven’t been any.
Now that I am on Effexor XR, we decided to cease the Sumatriptan for a couple of reasons.
First, there are some interactions between the two that can be unpleasant (I have experienced them with another similar drug in the past) and there are better rescue medications for migraine now that we could use if we needed them. Good choice and I am very comfortable with it.
Nothing new, no cures, and no new medicines on the horizon…so why is the annual checkup even needed?
It’s always a good idea to keep your Neurologist or medical professional in the loop on what is happening with you. Pain diaries, anecdotal experiences, and his/her observation of your general well-being can give clues about your health and how the medications are helping or not helping you.
Your doctor may also be required by laws or insurance requirements to see you at least once a year in order to be able to refill the prescription(s) that are helping you. You should be a team when it comes to your burning mouth pain, and if you aren’t, it may mean you need to seek another source of support.
Good luck out there!
Always welcome your posts, Kali.
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