15th Year Begins – Burning Mouth Syndrome

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.

So, what did I learn this last year?

~Pandemics really suck and we should all do our part to try to avoid them.

~Cystic Fibrosis is a dangerous genetic disease and a bummer of a birthday present for any newborn. Even if it doesn’t “run in your family,” consider getting screened if you have the opportunity before planning new additions to your family. There are masses of research and a great group of scientists and geneticists who are working on it, so support them if you can. Cystic Fibrosis Foundation.

~Misinformation and disinformation are powerful forces in our world, both in social media and many other sources of communication. Find good sources, ask questions, and try not to inadvertently share incorrect information. It’s sometimes a challenge, but worth it.

~Sometimes you just have to pick your battles and your boundaries, and then enforce them. It may not be the easiest thing you ever do, but it may be one of the most proactive and ultimately healthful activities.

That’s all I have, my friends. I have a checkup with my Neurologist at the end of the month, and I will pass on any nuggets he may have picked up along the way regarding BMS in a future blog post but for now, it is medication and coping strategies that keep me going.

I will keep talking about chronic pain and BMS. Whether it is with fellow sufferers, family, or friends, they need to know that I am still dealing, even after all this time. And when I stop talking about it, well then, maybe that will be the time to really check in on me because depression leads to withdrawal and withdrawal can be dangerous for us.

Wishing all of you a good summer and that you keep communicating and connecting. Oh yeah, and Happy Mother’s Day to all of you Moms out there!

Kalí

18 thoughts on “15th Year Begins – Burning Mouth Syndrome

  1. I’m only in my 5th year of BMS and through many doctor appointments I still have nothing that gives me any peace. Just took a 4 week video class on chronic pain….gave me a few ideas. You mention medication, may I ask what that might be, as I have been offered nothing. Only “treatment” recommended by my psych is a mouth rinse of warm water and cayenne pepper. After the “burn” subsides there is a few minutes of numbing relief. Thanks for sharing your thoughts.

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    • So sorry you have been suffering so many years. As you read through this blog, you will see a laundry list of medications I have tried and discontinued because they didn’t help me. They have helped others, so it may be worth talking with a Neurologist about this. Studies have shown that Klonopin/Clonazepam and Neurontin/Gabapentin were the two meds that were found to have the most effect. Gabapentin did not work for me, but Clonazepam Orally Dissolving Tablets do and so I have been on a minimal dose for quite a while. Let me know if you try these and if they work for you, and of course, best of luck to you.
      Kali

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  2. Hi Kali, What a wonderful post that address so many important issues. Thank you for continuing to care about others. As someone who was new to the possibility of BMS, I commented or messaged in the past, and I think you asked me to keep you posted. At this point, my neurologist suspects trigeminal nerve involvement. The left side of my tongue burns most days, and symptoms can extend from the left side of my mouth/oral cavity to the left side of my face. After a particularly difficult time, when my tongue hurt just from touching my teeth (thus limiting talking), he prescribed oxcarbazepine to use if that recurs. It has not gotten that bad again, thank goodness!
    I also have lifelong chronic health issues, about which I’d written a memoir before the burning mouth and other new challenges. A second memoir is in the works.
    I am wishing you so much healing–and a happy Mother’s Day!
    Thanks again for your outreach efforts!

    Liked by 1 person

    • Susan,
      I am so happy to hear from you again, but sad to hear that it may be Trigeminal Neuralgia. As you have probably already discovered,TN has a foundation, website, and celebrities involved in fundraising, so hopefully this will mean more treatments and possibly a cure. It is very painful and its hallmark is pain on one side of the face, often with jolts of electric pain. I am glad you are getting treatment and are seeing a Neurologist about it. Keep in touch and let us know how you are doing!
      Kali

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  3. I read your journey a few months ago. This will be my second Mother’s Day with BMS. Little did I know that this year my life would be totally different. Last year my symptoms were just beginning. I didn’t know about support groups and how horrible our healthcare really is. I was focused on my daughters wedding and welcoming a new son in law. Things got a lot worse. The wedding is a memory that I look at pictures trying to remember how I got through. The healthcare that didn’t know me only added to my frustration. All they did was refer me on to more specialist who knew nothing more than the last one. When pain management refused me, I knew I had to do something so I turned to social media. I found a group and couldn’t believe they sounded just like me. I found strength in their support. I found my voice to advocate my future care. What I didn’t know was the devastating effects it would have on my entire health. The doctors who refused to take me. The specialist who tried helping only to make things worse. Medication that never worked and one that worked only to tease me for three burn free weeks. When I request a refill I feel like a drug seeker, it’s magic mouthwash that I learned the hard way to use once a day so I don’t build a tolerance. I now see mental health to write my meds that help me sleep. Depression, anxiety, and stress have that too. I suffer severe exhaustion from the pain. I’m afraid to trust any medical provider. I’ve been forced to taper off meds that have lingering side effects. Refills that I wait days to get filled. It’s a nightmare that never ends. It’s a pain that I’ve never felt before. I’ve experienced the doctors who think therapy would benefit this rare disorder . Wow, what a year it’s been. A year of lessons learned. I finally figured out what my therapist was talking about. It took a year for me to get it, but I use it everyday. The tools that make sense. My control circle that only I control. One word everyday that I focus on. Today my word is Hope. I use it throughout the day. I use my faith as well. Some days my circle is empty. It’s usually after a bad few days. What I have learned is to be thankful. For waking up, feeling the sun streaming in. Hearing the sound of nature waking up after the cold winter. A new season with flowers blooming and the smell of fresh cut grass. This is my time and I’m thankful that I’m still here. Everyday I live life to the fullest.

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    • Jan,
      Boy, do we hear you here. I think all of us who deal with “mystery syndromes” of chronic pain experience at least some of what you describe. I would add the doctors who knee-jerk older women into the “menopause box” and blame it on “You’re just getting older.” I am glad you have found coping strategies, therapy, and the power of expressing your pain and frustration. Thank you for sharing with us so openly and honestly and I pray that one day you wake and are amazed that the pain is as mysteriously gone, just as mysteriously as it came. It happened to me once, and I have been hoping ever since that it will happen again. Hope is a powerful thing. Feel free to drop by any time!
      Kali

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  4. How I do understand you. The depression that accompanies this is, for me as bad as the actual syndrome. 10 years and hanging in there.

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    • Anne,
      Thanks so much for your comment. Some new sufferers underestimate the power that depression can have as we thrash around looking for reasons and cures those first few years. It can sneak into your life and grey out all of the beautiful things you used to love. Stay vigilant, and reach out for help if things feel hopeless. Talking about it actually does help, and talking to someone who has no connection to you (i.e. not family and not a friend) can be even more valuable.
      Ten years is substantial and no one here will ever blame a BMS sufferer for experiencing depression after years of pain. We know the feeling and empathize.
      Keep in touch and let us know if you find something that helps you, whether medicine or coping strategy.
      Take care,
      Kali

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  5. Dear Kali,
    Your blog is something that makes this abnormal condition feel supported and understood. It’s a wonderfully helpful and hopeful resource. Thank you for creating it.
    Now, I’ve been living with BMS for over 3 years. I was last seeing a specialist at John Hopkins in Baltimore who is a dermatologist. The medication treatments covered the laundry list from gabapentin to duloxetine interspersed with Magic mouthwash and a 0.1mg clonazepam mouthtwash mixture. The only relief I got was from the Magic mouthwash. The experience was very fleeting maybe for 15minutes. However, I can’t get a refill. Something that I came across awhile ago and have paid for information on BMS is f from Sklar University. The founder, Dr. Susan Sklar who’s clinic is in Long Beach, CA treats BMS with hormone therapy. I’m somewhat skeptical and would welcome others input. I of course mentioned this treatment to the specialist at Hopkins. He didn’t think much of it. Do you know anything about Dr. Sklar? I will look forward to your response and any other. Happy Mother’s Day, Kali….sincerely, Joli Kemp

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    • Joli,
      First of all, thank you for your kind words. They are the volunteer’s pay and praise and are very appreciated!
      I am sorry you have joined our cadre of BMS sufferers. It is no fun to try treatment after treatment with only temporary relief. The magic mouthwash is something that is incredibly fleeting (along with capsaicin, oral lidocaine gel, and probably other things) and I have yet to talk with a sufferer who bought themselves more than 20 minutes of relief. One lady put it best when she said hers (capsaicin BTW) was like hitting your foot with a hammer to take your mind off your headache. One must keep a sense of humor! On another note, you say a 0.1 mg Clonazepam mouthwash mixture. Is that a typo? I ask because I use 1.0 mg of the orally dissolving Clonazepam tablets each day and it is the only thing that has kept my burning at bay. 0.1 mg would not even touch my pain. It might be worth talking about with a Neurologist or Pain specialist.
      Ok, Dr. Sklar has come up before in my personal research and in maintaining the BMS Support Website, and you may hear and learn more about her and her results by checking in with a Facebook BMS Support Group. I looked at her site and wasn’t totally unimpressed, but the hawking of products, etc. caused me to take that information to my Neurologist to have a conversation about hormones and BMS. He joined you in skepticism and said that hormone levels had not been linked in any verifiable way to BMS despite its prevalence in menopausal and post-menopausal women. (I personally wondered if it was yet another manifestation of that dreaded “menopause box” many specialists tried to shove me into over the years even though I was pre-menopausal when all of this started.)
      Hmm. So, for me, it would be an expensive flight, hotel, car, uninsured visits and therapy, and additional funds for the supplements she recommends. I think I would have to talk with someone I trusted (who had an actual BMS diagnosis, too) who actually experienced any improvement. If you decide to pursue it, let us know how it turns out for you! Thank you for your Mother’s Day wishes, and the same back to you if that is applicable!
      Wishing you the very best and keep in touch!
      Kalí

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      • Dear Kali,
        Hearing back from you so quickly is a welcomed gift. Your reaction to Dr. Sklar’s promotion of her treatment, her selling of her knowledge and her products is what really pushed me to be more than skeptical. That type of hard press selling just has NO appeal and causes me to have very little trust in the seller and the product being offered. And so, I haven’t done more than read the paid for articles that she has published online. I don’t seriously plan on becoming one of her patients. At the moment I’m applying for a medical marijuana card. There was a study done in Italy where 17 BMS sufferers we treated with cannabis with some success. I’ll send you the link.
        Thank you again for your creation of this blog…..Joli

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      • Joli,
        Yes, please share that article link with me for the study unless it is this one that is already on the BMS Support website. https://academic.oup.com/painmedicine/article/22/1/142/5943271?login=true.
        If it is an additional study, I can share it with the monitor for the site and perhaps add it to the research. The number (17 in both studies), is awfully small, (as is usual in nearly all BMS research) but may give hope to those who live where medical marijuana is legal and allowed. Texas has the strictest access regulations in the Nation, so even if it is successful, it may be a long time before sufferers here could benefit.
        Thanks for the follow up and I hope you get your card and it helps!
        Kali

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      • Kali, yes, the study is on the website as you thought. I, of course, will let you know the results of my pursuit. Maryland is much more open concerning access to medical marijuana. Texas is tough on many issues, but I’m sure that you love it there.
        Take care,
        Joli

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    • Rita – I am wondering why you couldn’t get a new prescription for Magic mouthwash? While I understand now that magic mouthwash is no longer as “magical” for me as it used to be, it still provides me 15 minutes or so where I can go without having ice chips in my mouth. I definitely keep the mouthwash in my mouth WAY longer than I should – but when your teeth start hurting because you’re using ice in your mouth too often, you do whatever you need to in order to cut down the ice time.

      Kali – last night I read a post of yours from back in 2018 (I think) that was related to CBD/THC and whether it was helpful for those with BMS. I wrote a rather long reply – but I don’t see it posted. I am wondering if maybe it has to be moderated by you before it’s posted?

      If it somehow disappeared, I will re-type it. However, thinking about having to type it all out again is stressful – so, if my reply is just hanging out somewhere in a cyberspace “waiting room” – please let me know!

      I am not a doctor (well, I am a “doctor” – I have a juris doctorate degree – but I’m not a medical doctor) – however, I have a strong science undergraduate degree (chemical engineering) and have done A LOT of medical research over the years due to the many health issues I’ve had to deal with during my life. I am very discriminating when it comes to what I will read when I “research” one of my health issues. There is SO MUCH misinformation out there – some of it careless (author has good intentions but has used unreliable sources), and some of it is for monetary gain (which upsets me greatly because it’s easy to see why people will spend money to find a “cure” when dealing with a painful/debilitating idiopathic disease/disorder/syndrome). I only do my real research on PubMed – and I also evaluate the studies (is it a randomized controlled trial?/credentials of the authors/number of participants/reliability = reproducibility of results/transparency/etc.)

      Even though I know many doctors become irritated by patients who self diagnose and/or share their medical theories, I still decided to do so with my doctors. Luckily, my doctors have been receptive re: my medical research/findings, and now two of them regularly ask me about it during my appointments.

      I read a few (maybe three) of your recent posts this morning – which now makes me feel even stronger about the importance of sharing the information I included in my post last night with you. There are some similarities in our medical history (for example, migraines/allergies/obstructive sleep apnea/both being premenopausal when developing BMS) – and I have a feeling that if I dig deeper through your posts, I’m going to find more. You also appear to have a pragmatic approach which I appreciate.

      I am having a very rough time right now. Last night was very difficult. To be honest, the past several months have been difficult – and I’m starting to feel like giving up. I’m hoping that we may be able help each other figure something out re: this whole BMS mess!

      Liked by 1 person

      • Dani,
        The way WordPress structures blogs, the reply that I send you is posted along with the comment or question you have asked ON the blog post you have chosen to comment on. So, your question and my answer is on the blog post about Cannabis and BMS. If you go back to that post, you will see what you are looking for. You should also have received an email through the blog with my reply, but I don’t have micro control over that process. Let me know if this answer helps you.
        Kalí

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      • Kali, I would appreciate reading anything that has been added to this blog overt he years concerning CBD/THC being helpful or not to BMS sufferers. Thanks, Joli

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      • Joli,
        What I know so far, you know, if you have read my post on Cannabis and BMS. There is that one study that we have discussed previously, done in November 2020 on 17 patients. I have not seen anything more recent! If you find anything more current, please let me know and I will be glad to share it. If you try it and it helps you, please share that with us, as well.
        Good luck!
        Kalí

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