Cannabis and Burning Mouth Syndrome…Continued

Many people responded recently to my post from 2018 on Cannabis for Burning Mouth Syndrome. They all had the same question I had back then, and that I still have today! Could it possibly help with the chronic pain of BMS the way it seems to help other chronic pain?

I wondered if there was anything new on the subject in four years and the answer was, as usual, not a lot. One small study was done on seventeen patients, and you can read it here. It is also posted on the Burning Mouth Support Website under “Research and Studies.”

As you can see when you read the abstract, they are guardedly positive about the effects of cannabis on BMS pain but acknowledge that the study is too small and that placebo controls were lacking.

“In this pilot evaluation, the C. Sativa oil provided was effective and well tolerated in patients with primary BMS. Further bigger and properly defined randomized controlled trials, with different therapeutic approaches or placebo control, are needed, however.”

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Burning Mouth Syndrome and Me

Burning Mouth Cloud

Strange title for a post on a blog that has “One Woman’s Experience with Burning Mouth Syndrome” in its title, right?

But it seems to be necessary at this time of divisiveness and stress to reiterate that this is my experience. Yes, I do reference what little research has been done on this burning neuralgia, and will continue to send people to the BMS Support Website where they can read it themselves.

The truth is that NO ONE KNOWS what causes Burning Mouth. You can suspect dental work (I do personally!), or stress, or vaccines of any kind, or whatever you want to, but again I stress that NO ONE KNOWS.

When I decided to start this blog, it was for two reasons. One was to give me an outlet to say how it was feeling to me and what it was doing to me. Expressing yourself can give some relief. The second was to share what I learned about it, all the things I tried, how I got my diagnosis, and what coping strategies helped me and might help others.

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Remission? Not So Much-Burning Mouth Syndrome

My pain had been decreasing, and the distraction of helping others (always a good coping strategy) seemed to be making things even better. I took less medicine and reached for the cold water less frequently as I quenched thirst, not pain.

Then I had my yearly dental checkup and teeth cleaning this week, and although my hygienist was so careful and gentle, the burning is back. As I sit typing this, mid-morning, my tongue feels as painful as ever and my cold drink is by my side as much as possible.

I probably should have known better since I experienced remission once long ago, and it was not a gradual thing at all. I simply woke one morning in London with no pain. I thought the antibiotic I started before leaving on the vacation had worked, and celebrated that it was “over,” but I didn’t really have a clue that I was in remission at the time. I thought I was cured!

So, my Burning Mouth Syndrome friends, the journey continues. I will increase my dose of Clonazepam/Klonopin ODT slightly until this flare subsides, but will go back to the lowest dose as soon as it is possible.

I plan to keep searching and talking with you. I will stay informed by the Burning Mouth Support website as possible research and studies may lead to treatments or cures over time.

Stay tuned, and hold on to hope.

Is This Remission? – Burning Mouth Syndrome

Gigi & Miles

Last month I speculated that diving full out into caregiving for my adorable grandson Miles had distracted me from my discomfort, leading to less medication because there was less pain.

This month continues this good streak of much lower pain levels, less dryness, and the lowest dose I have ever taken of Clonazepam/Klonopin ODT.

I am beginning to suspect a level of remission is at play here, and although I know from previous experience that remissions in Burning Mouth Syndrome can be of varying time lengths and may be quite temporary, I am going to savor each and every day of this one.

It is a pity that it is occurring just as the Covid19 Delta Variant has taken our area back to social distancing and masks, even for fully vaccinated people, but I am getting lots of time with our local family (Look how Miles has grown!!) and my husband and I would be taking these precautions for our little Cystic Fibrosis Warrior, no matter what.

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Am I Getting Better? – Burning Mouth Syndrome

In May, I began a “job” again for the first time in about thirty years. I have been working as a volunteer all this time, but it was at my convenience and although there were busy times, it was not a constant or consistent routine.

Now I care for my five-month-old grandson who was diagnosed with Cystic Fibrosis at three weeks old. I drive to my daughter’s home by 7 AM each weekday morning and leave at 3:30 PM to beat the traffic home. (She and her husband work full time, right now at home but increasingly in their offices.) I feed him, change him, bathe him, play with him, and interact except when he naps. While he naps I help around the house with laundry, dishes, and preparing bottles. Now we are beginning solid food and that will be another adventure!

What does this have to do with my Burning Mouth Syndrome pain?

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Burning Mouth In the Time of Covid 19

If you are here, I assume you know what Burning Mouth Syndrome is, that no one knows exactly what causes it and that there is no cure. If you don’t, this blog is full of descriptions and you can also check out the BMS Support Website.

If you are here, you are probably a BMS sufferer or knows someone who is. This blog is not usually a casual stopping place out there on the Internet.

I’m going to assume that you know about Covid 19 and the global pandemic it has set off and the fact that people with pre-existing conditions are more at risk for severe cases of the illness and even for death.

Is Burning Mouth Syndrome a pre-existing condition that could put you more at risk? The short answer is that if it is primary (in other words, there is not an underlying illness that is causing it), probably not. However, we do end up in doctor’s offices more often and in a world that is avoiding as much contact as possible with other people, and particularly contact with sick people; that is causing a stressful situation for us.

Have you skipped a trip to your Neurologist or Pain Specialist yet? Continue reading

Sleep Apnea and Burning Mouth Syndrome

Life has decided I needed an additional challenge and so sleep apnea is joining Burning Mouth Syndrome now that I have conquered my chronic migraines with Aimovig injections once a month.

Sleep apnea affects so many people (An estimated 22 million in the U.S.) with 80% of those undiagnosed and therefore, untreated. Sleep apnea affects many systems in the human body, as laid out in a 2017 article from Science Daily, researched by John Hopkins Medicine. The harmful byproducts of this stress on our bodies are documented, but I found myself wondering if there might be any link with chronic neuropathic pain conditions like Burning Mouth. I can keep wondering since there are few studies and as usual with BMS, they are quite small.

However, here is what I found: Continue reading

A New Year with Burning Mouth Syndrome

Another year begins and this summer it will end my twelfth year and start my thirteenth with our little friend, Burning Mouth Syndrome (BMS).  That is a long time, but there are others out there who have suffered longer. Sometimes, much longer.

As we round the corner into 2020, what have we learned?

BMS is still a mystery. There are evidently no celebrities in the world who suffer from it (or at least they aren’t publicizing it). Diagnosis is still one of exclusion and takes dedication, discomfort, time, and resources to achieve. Most importantly, there is no cure in sight. Continue reading

Traveling With Burning Mouth Syndrome

My husband and I like to travel, and we have always dreamed of going to New Zealand. The timing is right (We have the resources but aren’t too old or infirm to enjoy the activities!) and so we have planned an adventure-filled excursion. We will deal with a 15-hour flight there and back, crossing the International Dateline, and a time zone change beyond what I have ever experienced.

The question arises…How do you stay on top of Burning Mouth Syndrome under these circumstances? 

Plan, my friends, and plan well. Continue reading