My last post let you know that my Neurologist had prescribed Effexor XR to help with my burning neuralgia.
At 37.5 mg, per day there was no discernible effect. We went up to 75 mg.
After a while at this level, I noticed that the burning had become more of an intense tingling for part of the day. I reported this to my Neurologist and he suggested we double the dosage.
At 150 mg I began to notice that even the tingling was lessening for most of the day. Some days it was hardly discernible until late afternoon when it would sometimes get too intense and I would need one dose of Clonazepam ODT .5 mg to control it. (I am approved for up to 2 mg of Clonazepam a day, so this is a small dose.)
I reported these changes as I approached a month of the 150 mg dose, and asked what he would recommend. He responded that we should give this dose another month and see if accumulated time makes any additional difference. I agreed, and so this is what we are doing!
After over fourteen years of Burning Mouth pain, tingling is a blessing. Is the pain all gone?
I reported in a previous post that my Neurologist had suggested that I try Effexor XR (Venlafaxine) in addition to my daily dose of Clonazepam/Klonipin ODT.
He started me with the lowest dose, and it didn’t seem to do anything so as we had agreed, he doubled the dose and I started taking it once a day.
I immediately came down with a head cold that turned into bronchitis and set everything on hold for a while. Now I have had a clear month at the higher dose and I have noticed something interesting. My daily dose of Clonazepam ODT has always been subject to some fluctuations due to flares in pain after dental work, abnormally dry air, or those elusive good days when the pain level isn’t too high, so it took about a week to notice the pattern.
I was not burning so much as tingling at the beginning of my pain cycle. I had been able to get by with one dose of Clonazepam ODT a day for a week.
If you have been following the news, you know that most current cases of Covid, including reinfections, are the Omicron BA-5 variant, which has two faces for us. The good face is that it is not as virulent and fatal for most people. Note I do not say all. The bad face is that it is even more infectious than measles and doctors note correlations between accumulated injury to the body and long Covid symptoms with reinfections. For those of us with the chronic pain of Burning Mouth, the prospect of adding another layer of symptoms or exacerbating the ones we have with hacking coughs and congestion is daunting.
Interested in learning more? NPR explains it herevery well.
Our immediate family has remained relatively unscathed from Covid. Our younger daughter and her husband who live in another state got it, but our daughter is a front-line healthcare professional and they are both somewhat frequent travelers, so that was probably unavoidable. They are young, healthy, and did okay since they were fully vaccinated and boosted, but it wasn’t a pleasant experience.
I had my yearly sit down with my Neurologist yesterday and after discussing my migraine treatment with Aimovig (100% effective, BTW, but getting very pricey with my husband’s new insurance.), we moved on to Burning Mouth Syndrome.
He asked how my pain was, and I said, “The same as usual. I achieve tolerable levels with 1 mg of Clonazepam/Klonopin ODT spread between two doses, and if I have a flare, I take an extra .50 mg to deal with that and try to get a nap.” He shook his head and said, “I have reviewed your file and you have tried just about everything out there, but there is one that I noted you haven’t tried and I think it might help. It went generic in 2006 so it isn’t outrageously expensive and you can safely try a low dose with your present meds and see if it has a good effect. I would like to get you out of pain if it is at all possible.”
Well, to be frank, this is what you want to hear from your specialist. I said I had some questions about other treatments before I jumped into another drug tryout and he sat back and listened intently.
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 Websiteunder “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.”
Yes, Mother’s Day is this weekend and each successive holiday is a combo pack for me.
On one side, there is the great joy we take in our wonderful daughters and the special families they are both creating. Feeling appreciated for the love, time, energy, and creativity I invest in them, and an added bonus this year of a precious grandson who is still trying to pronounce “Gigi” and who gives me gorgeous, gap-toothed smiles and amazingly strong hugs.
On the other side, there is the 14th anniversary of this go-around with Burning Mouth Syndrome. The 15th year begins the day after Mother’s Day with no end in sight.
There is nothing else like this in my life and it has had effects that I am probably not even aware of yet. Experts say that the body remembers trauma, whether mental or physical, and it may be surprising to see what outcomes await those of us who deal with chronic pain for years or even decades.
Since then, a couple of dramatic things happened. A third occurred more slowly and was less dramatic, but more long-lasting.
First: I received this notice and an accompanying notification from my sleep apnea specialist that encouraged me to enroll myself in the recall website and to add an additional filter mechanism (that I could buy on Amazon) to protect me from the particles the machine could be spewing into my lungs.
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.
Boosters have been approved and recommended by the CDC, the FDA, and my Doctor.
My 82-year-old Mom got her Pfizer booster as soon as they were approved and after a day of the usual side effects, now feels much safer as she joins her girlfriends for lunch out now and then. Moderna and Johnson & Johnson were next up! Moderna was a half dose, so I went with my Doctor’s recommendation and got the Moderna booster. I had more of the side effect reactions with the booster than I did the second initial dose. Fever, chills, reddening of my injection site area, and swelling of the lymph gland under the injected arm. Not fun, but it gave me a tiny glimpse into how debilitating full-blown COVID could have been for me and this is without any lung symptoms!
I have lung damage from chronic bouts of bronchitis, and that was part of what worried me about getting COVID19 personally. I was not sure my lungs would make it through the damage that the virus can cause.
Now I will not worry as much about that.
People ask, “Does this mean you won’t wear a mask anymore?”