We have covered a bit of this ground before, and again I urge you to communicate, take the rest (and medicines) you need, and use your coping strategies to get through the stress of the holidays.
Stress can be part of the “Holiday Package.“
Things have loosened up and you may be putting family events together, gathering to open gifts, and doing things you haven’t been able to do for a couple of years. It can be hard to get back into the swing of things.
Presents? Oh, don’t get me started! The logistics of getting everything to everyone with the uncertainty as to whether things will get there in time…
Over the last few posts, I have kept you up to date on my new medication, Effexor XR/Venlafaxine HCI.
My Neurologist initially prescribed a very low dose with no effect. We doubled it and saw the burning neuralgia back off into a tingle for most of the day. We doubled it again and got amazing relief that lasted all through the day, keeping the pain to a very tolerable tingle. Then the side effect of muscular tics began and we had to cut that little honeymoon short.
I am back on that medium dose of 75mg per day and I usually have just a light tingle that escalates. Sometimes I can skip that late afternoon dose of Clonazepam ODT, but other days I need it to blunt the tingle that is becoming too strong. I haven’t had a real flare yet with Effexor XR so I am unsure whether that means it is preventing them, or the stars just haven’t aligned yet. I will let you know because the ultimate test looms ahead!
I shared the good news with you in one of my last posts that the Effexor XR at 150 mg per day had lessened my burning into a tingle that did escalate through the day but was easily tamed with .50 mg of Clonazepam ODT around dinner time.
I was so happy and just waiting to see if this would hold or if something would change.
As with nearly everything I have tried against this burning neuralgia, something did change.
My husband started noticing a couple of weeks ago that I had begun shaking my head in little “no” movements when I was engrossed in a TV or computer show and it increased as time went on. He mentioned it to me and I truly had no idea I was doing that. It only happened when I was watching TV, whether on the big screen or my computer or reading at night and I felt nothing unusual. He videoed me when I wasn’t paying attention and I agreed, it was a definite involuntary movement.
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 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.