About Kalí

Many of these earlier posts first appeared on another blog I have called, “Kali’s Musings,” which explores the parallels between parenting and management, along with some personal life writing and posts about mentoring. If you are interested in those topics, feel free to check it out!

Burning Mouth Syndrome became a very popular topic on that blog, and it was suggested that I break these posts out into their own venue.

My goal is to share some of my journey with this mysterious, and incredibly persistent syndrome, and perhaps to help you along the way.

Stop in any time, comment if you wish, and if there is a question I can help you with, I will be happy to do so.

Welcome.

————–

Burning Mouth Syndrome (BMS) entered my life for the first time in 2006.

I had dental work on my two front teeth and woke soon after with burning in my mouth and throat. It did not affect my tongue at that time.

After visits to my Dentist and an Ear, Nose, and Throat doctor, they eventually tried an oral antibiotic and after four months of pain, I woke up my second day of antibiotic treatment with no pain whatsoever. Hallelujah! I assumed, as did my physicians, that the treatment had worked and whatever was infected was no longer a problem.

We were all so wrong.  I was simply in remission.

In May of 2008, I was again having problems with my two front teeth, and it turned out I had many issues there that eventually led to oral surgery and finally to extraction. But before all of that came about, on Mother’s Day I sang two concerts (I am a professional singer), and that night felt a little like I was coming down with something. “Fluish,” for lack of a better term. I ran a very low-grade fever, and when I awoke, the burning pain in my mouth and throat had returned.

I recognized it immediately, of course, and contacted my family doctor for the antibiotic that had worked two years earlier. She was very helpful, and I started the next day. No dice after a complete course, and my second Burning Mouth Syndrome journey began and continues.

Meanwhile, I was having oral surgery, and then the extraction of my two front teeth and the nerves in my mouth and tongue were in overdrive. The tongue got involved with a vengeance and started burning in that familiar pattern of escalation throughout the day.

You can read my posts on this blog, which give a somewhat chronological window into the life of a chronic pain sufferer and what I learned along the way. It’s not pretty, but it’s the truth.

It is my hope that something in my journey will help you in yours if you are a sufferer or love someone who is.

6 thoughts on “About Kalí

  1. Hello Kali,

    I hope this helps someone. I also had BMS and the pain was unbearable. I suffered it monthly. My doctors and dentist could not diagnose it nor treat it.
    All the treatments like gum or ice chips were very temporary. The mouthwash with lidocaine helped most but was also very temporary. The causes and treatments are pretty much all guesses since most of us sufferers have many of the potential reasons for having it.
    So after tons of desperate research I found a simple 2 vitamin regimen that cured it for me! I was suffering with terrible symptoms one week when I started taking 1000mg of L-Lysine and 400mg of Alpha Lipoic Acid per day and within 3 days the symptoms were almost completely gone! 5 days later it was completely gone. These are good ol’ fashioned OTC vitamins you can get anywhere.
    I have been following this regimen for 3 years now and have had ZERO episodes. I experimented once and tried stopping the vitamins and within 3-4 days I felt the symptoms coming back. Once I resumed, the symptoms again disappeared.
    I found this cure with a lot of luck. A dental hygienist friend recommended I try the L-Lysine which did not work on its own. Then I found a person on a message board that said the Alpha Lipoic Acid gave them a small amount of relief. So I decided to take them together and it worked! The cure also worked with no dietary or medication changes.
    I don’t know if it will work for everyone but if it helps even one person it would be great that I could help. The pain is so terrible and the lack of actual knowledge on the syndrome is very frustrating.
    Thanks for reading and hope it works for you!
    Mike B

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    • Mike,
      I am so happy you found something that worked for you. I know many of the folks on the Burning Mouth Syndrome Facebook page have tried these supplements alone and together, and you are the first I have heard from who got relief. I tried it myself back at the beginning of my journey but after a year there was no perceptible difference for me. As you say, it is different for everyone. Keep in touch and let us know if it continues for you. I had an almost two-year remission and thought it was because of an antibiotic I had taken but when we tried it again when it recurred, it had no effect. They don’t call it a mystery syndrome for nothing!
      Thanks for commenting and following. It is very appreciated!
      Kali

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  2. Hi Kali
    I was diagnosed with BMS 6 months ago. It has been the most miserable time of my life. I was prescribed Pregabalin. I have never been sure if it is actually helping or the pain was just escalating up and down. I am currently weaning myself off and having some nasty withdrawal symptoms. I would like to try Clonozapam and wondered if you could share your experience with it. Do you take as needed or regularly every day? Have you developed any tolerance and had to increase the dose? I think I developed a tolerance to the Pregabalin and needed increased doses. Im afraid something similar will happen with the Clonozopam. Thankyou.
    Catherine

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    • Hi, Catherine.
      I am so sorry you have joined our chronic pain club, but I am grateful you actually got a diagnosis. Many people thrash around for years before they even reach that point.

      I have tried a laundry list of medicines over the 12+ years I have dealt with BMS this time around, and Pregabalin/Lyrica was one that we actually tried twice. It was just not terribly effective for me even though it was presented as a newer and more efficient form of Neurontin/Gabapentin. Neither of those meds was useful for me, but Klonopin/Clonazepam actually is. I have been taking about 1 mg. total of the ODT formulation each day for years, split into 2 separate .50mg doses. It is one of the few meds that are considered go-to for Burning Mouth Syndrome and I am grateful for it.

      My neurologist allows me to go up to 2mg per day if needed, but although I may do 1.5 mg during flares (particularly after any dental work) I have not needed the 2 mg. I have not developed a tolerance to it, although the drowsiness side effect did become less noticeable over time, and have not increased my dosage in 12 years.

      Neurology has been the most helpful specialty I have worked with (and if you read through the blog, you will get an idea of how many other specialists I have seen over the years) and my neurologist keeps up to date with the research (scant though it may be) and found a way to prevent the other ailment I had been suffering with for years…migraines! So, as we joke occasionally, “One down and one to go.”

      As I always say, I am not a doctor and any changes you want to make should always be approved by your medical professional. Good luck, Catherine, and let me know if I can be of additional support.
      Kalí

      Liked by 1 person

  3. Hi Kali, I am so grateful for your website and to just know that there are other people our there on this same journey. I have had BMS for seven years; it spontaneously came upon me shortly after the death of my mother. It has been an up and down battle with periods of almost complete remission and relapses. I am currently in a relapse state possibly due to the immune response from the vaccine. I am not sure. But, I am close to quitting my job, a job that I have worked so hard to have. Anyway, I saw in one of your posts that you had taken pramipexole and may try it again. I was wondering if you had indeed tried it again. My maxillofacial dr. is hesitant to put me on it due to side effects, but I am at the point where I want to try. I have also never tried clonazepam and wondered how it has changed your condition. Thank you so much for having the courage to share your experiences with us. It is so encouraging.

    So grateful to have found you,
    Leanne

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    • Leanne,
      Welcome to the Burning Mouth Syndrome community and thank you for your kind words. It sounds like you have seen specialists and have gotten a definitive diagnosis. No small task, since BMS is a disease of exclusion and many people spend years just figuring out what is wrong.
      Regarding pramipexole (Mirapex), I am afraid that it was just as ineffective at moderating my pain the second time as the first. I ramped on and ramped off with my Neurologist’s supervision and it made no difference whatsoever.
      Clonazepam/Klonipin is actually the only medicine that has ever affected my pain positively, and once I learned to deal with its major side effect (sleepiness), it is currently the only thing that I take for my burning.
      Clonazepam and Gabapentin were the first two drugs called out by Dr. Miriam Grushka and her team, and although I tried Gabapentin/Neurontin, and its successor, Lyrica, it was not effective for my pain and had more side effects.
      I take the Clonazepam ODT (Orally Dissolving Wafer) at a .50 dosage and most days now I am able to get by with one dose. On heavy pain days or flares, I am authorized by my Neurologist to go up to 2 mg., but I have not had to do that and 1 mg seems to keep the dragon at bay enough for me to function even in bad times.
      I think the hardest thing about BMS is its persistence. I am in my 14th year of it now, and don’t see any end in sight.
      If you find yourself losing hope or getting depressed, don’t despair because you are far from alone. I always laugh when I read that depression is a cause for BMS. Seriously? I found BMS caused depression, not the other way around and who wouldn’t get discouraged after years of chronic pain that can’t be seen?
      In any case, if you start to feel that it is overtaking you, reach out for counseling and find a good professional who will be your listening and non-judgmental ear. It is very helpful to just vent to someone who is not your friend or family or a relationship that could be somehow changed by your revelations.
      I am so glad that the blog has helped you, and if you read through, you will see that I have tried countless things, but the only thing that has consistently helped me cope with the pain has been Clonazepam ODT. Talk to your doctor about it, and if you have the resources, a Neurologist can be very helpful.
      I hope you are not forced to quit your job if it is something that keeps you engaged and challenged. I have found personally that distraction is my ally in coping with BMS and would not give up that tool in my tool belt if I could avoid it.
      Keep in touch and let me know how you are doing and what you try next. Support is always here and do check out the BMS Support website for the latest research that we can find!
      Kalí

      Like

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