Why You Should Do Yearly Checkups – Burning Mouth

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!

4 thoughts on “Why You Should Do Yearly Checkups – Burning Mouth

  1. I have found your blog helpful- I have suffered with primary BMS for over 10 years and am always searching for the next possibility. I just finished a series of alpha lipoic acid IV’s with no positive affect. I have been on clonazepam for a long time and am going to ask my provider to change me to the ODT form to see if that might help. I really have tried everything and am not resetting much in the morning anymore, just burning all day. Just thought I would check in here and add my voice to be part of a community. Also just tried CBD/THC 1/10- no help…I have a cluster of autoimmune conditions including having MS for over 20 years. BMS is the condition that is the most difficult to live with. Just found the Pain Management Workbook by Rachel Zoffness and starting on that process. More to say but I will leave it here for now.

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    • Thanks for joining in, Jamie! I have tried ALA a couple of times and just didn’t find any relief from it although I have heard anecdotally that it has helped some folks. Thanks for the input on CBD/THC, as well. I think that many will try this route as it becomes more legally available. I hope the ODT form of clonazepam is more effective for you, and be sure to check your dosage with your provider because often I see people on such a tiny dose or spitting it out and having no relief from it. As I have indicated recently, I am getting so much relief from Effexor XR/Venlafaxine that I need less Clonazepam, which has been a good thing. Keeping you in prayer for your multiple illnesses and hoping that you will find relief for the ones that can be treated.
      Kalí

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      • thanks Kali- i have tried other antidepressants- i can talk with my doctor about the Effexor. Cymbalta was awful for me…I am hesitant to try another pharmaceutical, but i will think about it.

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