Every year in May now, I join Great Strides for Cystic Fibrosis, fundraising and supporting my oldest grandson in his fight with CF.
I celebrate Mother’s Day with my family…
And I mark off yet another year of Burning Mouth Syndrome/Disorder. This year marks the sixteenth anniversary and the beginning of the seventeenth year because there is no cure or even a reliable treatment in sight.
Sounds a bit melodramatic, doesn’t it? Believe me, if you felt what we feel every single day, you might slip a bit into the dramatic side yourself!
I have described Burning Mouth Syndrome/Disorder in this blog several times over the years, so I won’t make you read that again, but you can definitely find the definition here in prior posts.
Today I made my yearly pilgrimage to the Neurologist to check in, renew my Aimovig prescription (For migraines – VERY effective), renew my Clonazepam ODT prescription (helps me deal with the daily burn), and to talk about any other options that may have come up in the past year.
As you may know from my prior posts, Effexor XR/Venlafaxine was quite effective for me until the muscle tics started. I looked like I was shaking my head “No,” continuously and I had no idea I was doing it. My neurologist ramped me off of Effexor XR as soon as I alerted him to the side effects.
So, another med got kicked to the curb. However, at my annual checkup, my primary care physician asked if I had discussed some related meds with my Neurologist. To my surprise, there may be another possibility for some relief.
Many years ago, when I still suffered from chronic migraines, a pain specialist put me on Cymbalta/Duloxetine for the BMS. I had only been on it a week or two when a migraine hit and the only medicine I had for them at the time was Imitrex/Sumatriptan. Guess what does not play nicely with Cymbalta? Yeah. It was a pretty bad reaction and I immediately discontinued Cymbalta. I did not think of it again until my Doctor listed it as related to Effexor XR, but perhaps with fewer side effects.
Since I no longer get chronic migraines (Thank you, Aimovig!) and no longer even have Sumatriptan around, my Neurologist suggested that I give it another try. And so I will. I will keep all of you in the loop as I try Cymbalta.
Wish me luck and that seventeen might be the last year of this daily pain. That would be a great gift.
A Burning Journey 
Hi Kali,
I wish you luck with the Cymbalta! I too am on that, as well as Clonazepam. I started Clonazepam in 2021 for BMS. It eliminated it completely at first but after a couple of months it started creeping back. It fortunately has not reached the intensity that it once did before the Clonazepam and some days I barely notice it, while others it is more bothersome. After reading your article, I’m wondering if being on both Clonazepam and Cymbalta keeps the BMS under control, or at least bearable!
My main concern is that I have been told by one physician that taking Clonazepam long term can lead to memory loss/dementia. I’ve heard from another physician that there is no definite proof. I’m curious to know if you have heard of a link between the two?
Again, I hope that this next year brings you much relief from BMS!
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Hi, Wendy!
I have been on Clonazepam ODT since 2013 and have not had any issues other than occasional drowsiness. Of course, I am not taking a large dose, either.
My Neurologist have discussed the benefits vs side effects of this many times and he is not concerned about mental issues. He is very supportive of my staying on a minimal dose that lets me live my life. I wish there were more studies to point to, but unfortunately, BMS/BMD is incredibly under researched. You can browse the latest at the BMS Support Website if you are curious.
I am hoping that Cymbalta will have the same efficacy for me that Effexor XR did, but without the muscle tics, but only time will tell. Your experience gives me hope. Thank you so much for your kind words and good wishes. I wish the same for you!
Kalí
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Kali,
I have only had my “self diagnosed” BMS since January, and like others, my dentist and endodontist haven’t got a clue. It started after two extractions, bone graft, implant procedures with much mouth trauma, antibiotics, and steroids. I read in one of your notes that you are in San Antonio and wonder if you would share the name of your neurologist. It would be so helpful to find a doctor who has experience with this.
Thanks,
Jane
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Jane,
I don’t live in San Antonio. I live in Austin and my Neurologist is Dr. Greg Thaera at the St. David’s North Austin Medical Center. He is excellent and I highly recommend him as a helpful and innovative specialist.
Good luck to you! Your dental experience sounds quite similar to mine.
Kalí
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Thank you for keeping us updated. All your information is so important to the rest of us dealing with BMS.
Tammie
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Tamura,
My pleasure! My hope is that my experience might help someone else along this road. Thank you for commenting!
Kalí
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Hi Kali
It’s been a long time, I’m Justin from China, we had a conversation half a year ago, and I was suffering from burning mouth syndrome at that time. Since January of this year, my tongue no longer hurts, but the pain has shifted to the left gum, I went to the neurology department again, this time they asked me to do an MRI of the trigeminal nerve, and the report showed that my trigeminal nerve was compressed by blood vessels. So I was diagnosed with primary trigeminal neuralgia.
In March of this year, I had a procedure called MVD (Microvascular Decompression), which opened my skull and separated the nerves and blood vessels with spacers. I am currently recovering, and although the symptoms have not completely disappeared, I am confident.
Interestingly, because of the sleep problems caused by the pain, the doctor also prescribed me Duloxetine (Cymbalta), and I was going to take 30 mg every day before bed. Hope no much side effect .
Not sure if you’ve had an MRI and your doctor has completely ruled out cranial nerve problems for you ?
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Justin,
This may sound weird, but I am glad you finally have a concrete diagnosis and a nerve you can address, although that sounds like an unpleasant procedure to go through. However, if it cures your pain, I am sure it is worth it!
In answer to your cranial nerve question, yes. I have had many MRIs, CTs, X-rays, and even a series of nerve blocks from a pain management specialist. Unlike yours, my pain is not trigeminal neuralgia. They were able to definitively rule that out, but the alternative seems to be that the fine, hair-like nerves in the oral cavity are the ones that are firing and they are not blockable. The upside is that BMS does not affect my sleep at all. The nerves turn off until the next morning until they start firing again after I wake.
It is truly Burning Mouth Syndrome/Disorder and has no real treatment.
I will start on Cymbalta today and I hope it helps!
Thanks for updating me, and my prayers are that this treatment is very successful. I am sure you have checked out the TNS Foundation website (https://facingfacialpain.org/#:~:text=The%20Facial%20Pain%20Research%20Foundation%20(FPRF)%20was%20established%20in%202011,generated%20facial%20pains%20and%20diseases.) for support and information, but here it is in case you haven’t.
Good luck, and please let us know how you are doing!
Kalí
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Good morning Kali! I’m finally getting my thoughts together to respond to your last few messages. I’ve read all your post and sat down and started my response but got side tracked with my crazy life the last few months.
Our move to Atlanta has been a challenge in many ways. I’ve always been up for any new adventure and would embrace a move with positivity. That was before becoming a senior. With that comes health issues and BMS. I was also leaving a daughter and three older kiddos four hours from where we lived. I had no idea what Atlanta was like. Companies just do interviews on line, set a start date and you do the rest.
I was diagnosed with Hypophosphatasia (HPP) in October. The Mayo doctor was rude and wouldn’t come out and say that’s what I had. He referred to it as complicated. More confusion since genetic testing was positive. Years of low ALP level, dental issues all my life. Every symptom I suffered confirmed the diagnosis. More frustration, the upcoming move, and my oral surgery to uncover my last upper dental implant. All happened in December before Christmas followed by our move two weeks later. The surgery triggered Trigeminal Neuralgia and more burning that hasn’t stopped. Here we are today! I’m surviving in this big city. We live in a northeast suburg. I saw genetics for HPP, working with a drug company for a treatment to help restore/protect my bones especially in my mouth. I have dental appointment today for my cleaning for remaining teeth. HPP causes so much damage to teeth and BMS and my dryness makes dental hygiene a must. I found a wonderful concierge doctor. It allows me more face to face time to ponder many thoughts about treatment ideas and goals.
I love hearing about your support and role you play in your grand son’s life. We’re blessed to have grandchildren and the special ones need our families. We have our sweet 19 year old Iris. She was born so very little and as a mother I wondered if something might be wrong. We found out she has Williams Syndrome. Despite her challenges, she is thriving. My daughter and husband made sure nothing was impossible. She will finish her first year in college in a few weeks. It’s a program designed for students who need skills with independence and daily living.
I’m glad I’m back in touch. I really had good intention about responding. Reading your post at least reminded me of all the support I have. Tearful days are becoming less and less. I know a lot ahead of me. I have my youngest daughter’s wedding in September.
Take care and I will stay in touch. Wishing you a wonderful Mother’s Day!
Hugs, Jan❤️
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Jan,
I am so sorry about the HPP and its effects throughout your system. I am glad you are getting help and treatment and I am so happy for your family news! Congratulations, and my prayers are with you and your family in the coming months as you prepare for a great wedding. Thanks for checking in, and may your tearful days become only ones of happiness!
Happy Mother’s Day,
Kalí
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