A Pattern of Pain – Burning Mouth Syndrome

Burning Mouth FlamesNOTE: Although this post will remain on Kali’s OQM Musings, it has been reproduced and future BMS posts will appear on A Burning Journey. Please check it out if you are interested in more about Burning Mouth Syndrome.

If you have been reading this blog for a while, you know I have begun my 8th year with the chronic pain of Burning Mouth Syndrome (BMS).

There are two types of BMS.  

The first is primary and it is what I have been diagnosed with. If you have no underlying conditions and everything (yes, I mean everything) looks just fine, despite the oral burning you experience every single day that worsens as the day goes on, but ceases when you sleep…welcome to our small, but rapidly increasing numbers

If you have these same symptoms, but you also have an underlying disorder (often autoimmune related, but not always), then you will get a secondary BMS diagnosis. You might be one of the lucky ones who have something that can be treated, and treatment of the underlying condition may also relieve the BMS.

But, back to those of us who are generally healthy, active, and functioning well except for this chronic pain that has collected a plethora of herbs, Internet home remedies, homeopathic and supplements to throw at it, but only a few prescribed medications that have been shown to help in scientific studies.

When you first start burning, you will try anything…I did!

Capsaicin rinses (cayenne and hot pepper sauce), aloe vera juice, vinegar concoctions, and more crossed my path and were tried without relief. My ENT even tried a compounded estrogen spray in case it was hormonally related. My first neurologist (I am on my third!) tried a lidocaine gel which not only was the worst tasting stuff ever but merely numbed my oral cavity and throat for 15-20 minutes until it wore off. I decided I would rather burn than experience that again. None of these things helped me; not even a little, despite the anecdotal results some of my friends on the Burning Mouth Syndrome (BMS) Facebook page experienced.

file851332343852I visited an array of specialists, and each had their own hammer to use to pound on my particular nail. It is to be expected, but it can cloud the issue if you aren’t careful. Yes, go see a Dentist, your family doctor, and an ENT to start. They can often diagnose and treat the “horses” that can cause this kind of pain.

Some horses are; incorrect bite, dry mouth issues, allergies, hormonal imbalances, geographic tongue, anything that can turn up in a blood test and any irregularities in the oral cavity. Horses can include acid reflux, as well, and you may want to see a Gastroenterologist next if GERD is suspected.

Eventually, if you are like me, you will end up at a Neurologist’s office where they will also rule out the horses like tumors and nerve impingement and then when everything comes back terrifically normal, they will begin to look for “zebras.” Zebras are the rarer maladies and they are often syndromes of exclusion. In other words, everything looks fine, but you are still in pain, so it must be a Zebra.

What do we do with our Zebra?

If it is primary BMS, there is no definitive cure and often we can only guess at what even caused it. Hormonal changes, dental procedures, being a “super taster” with more nerves psi, stress, and even mast cell overgrowth are suspects, but no one knows for certain.

I tried the most commonly used medicines, based on excellent research Miriam Grushka and her colleagues did in the early 2000s. Neurontin/Gabapentin and Klonopin/Clonazepam were the two that seemed most effective, and so under my neurologist’s care, I ramped up on these two medicines.

I found that Neurontin/Gabapentin had too many side effects for me, and so under his instruction, I ramped off of it. Interestingly enough, nothing changed, so I had to conclude it was not working for me. Klonopin/Clonazepam was a different story. I dissolved the regular tablets in my mouth and swallowed the medicine, and although it had the side effect of drowsiness, at a very low dose it took the edge off my burning and actually helped.

clonazepam_0.5mgThis June, my latest Neurologist took me to task for not taking an effective (therapeutic level) dose of Klonopin/Clonazepam and strongly advised me to take 0.5 mg in the morning when the burning begins, and then 1 mg at lunch or shortly thereafter.

He also switched me to the dissolving wafers that are usually sublingual and they are MUCH more effective for me than the other form.  I actually put them on my tongue and let them dissolve, holding the liquid in my mouth for at least a minute, and swish it around a bit before swallowing. It has been about 2 months now since I switched and although I do experience a bit more drowsiness in the afternoon (I combat this with green tea!), I can honestly say I am mostly out of pain on most days. I still get a little tingle on the tongue at times, but about 95-98% of my day is mine now.

Will this work for you? I have no way of knowing, but do think about discussing it with your Neurologist.

Everyone is different, but I am very grateful that I listened and trusted my doctor. because this is the first time in over 7 years that BMS is not the first thing on my mind. I don’t know if this is temporary or if it will last, but it is a joy not to burn every single day, and I will revel in it for as long as I can.

12 thoughts on “A Pattern of Pain – Burning Mouth Syndrome

  1. Kali, I am just getting back from vacation with my sisters so sorry for my delay. Your message is so HOPEFUL! We just moved to Nashville and bought condo -thus confusing time- but when I find a Neuro here I will share what worked for you. This helps me get way ahead in the process. I will check thread when things settle down. Best, Elizabeth Jesse

    Sent from my iPhone

    >

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    • Excellent, Elizabeth!
      I am happy to be of some small help. Enjoy Nashville! Our daughters both went to school there and it fast became one of our favorite towns. I hope you can find an excellent neurologist and he or she can help you.
      Keep in touch and let me know how it goes,
      Kali’

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  2. Kali, I remember you from the BMS page. I too have had nothing wrong found and our stories are so parallel as to what’s been tried…clonazepam has been the only thing that has made even a small difference (besides chewing gum and eating!). I had just started (yesterday) trying dissolvable klonopin as opposed to systemic, and then I see a reference to this blog entry. (There are also a couple of research studies out there, one from 2010, and a paper at a conference this year) touting this form factor and procedure of clonazepam. Your experience is one more thing giving me hope that this will work! I’m not looking for a cure, just for ongoing relief with as little danger as possible (and all the more dangerous meds haven’t helped anyway).
    My only question for you (I am thinking you know more about this stuff than I do) is do you think this medicine should be being managed by a neurologist or can my GP manage it? She thinks she can; not sure if there’s anything that should be being monitored for other than my reports on side effects.
    Good luck to us both!

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    • Carolyn, I think your GP can manage it, to be frank. My latest neurologist is the one who suggested it, so of course, I will stay with him on this and my migraine med, but my Family Practitioner would have been fine for this, as well. Your GP is correct, that the only thing she will be monitoring will be your reports of relief and side effects, but she will also be monitoring your usage, since Klonopin is a controlled medicine. We don’t want any addiction or over usage creeping up on any of us!
      Good luck, and please let me know how it goes for you. A local friend has just started the regimen and is getting more relief than she ever has, so my hopes are high, but realistic. After all, we are truly just managing the pain/symptoms, but for now, that is enough.
      Kali’

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      • Thanks so much for your reply, sorry it’s taken this long to get back to you.
        So, I’ve been doing .5 after meals 3x/day (this was how it was done in a Spanish study reported at a relatively recent conference; so I don’t know if they’ll ever write it up as a full paper for publication) of the dissolvable for about the last 5 weeks — my GP was totally willing to give it a try if we started at the lower amount (the study had folks at 1 mg 3 times/day). My biggest problem is my prospective memory is terrible! I’m always realizing at inconvenient times that I haven’t taken the one for after meal X, and I can’t get to it anytime soon. I don’t want to scatter them all over the house (i.e., some in the kitchen where I’m keeping all of them now, some in the bathroom upstairs, some in my purse) for fear of OVERdoing it if I have the problem of not remembering if I did that particular one. Sigh. (I’ve had a lot else going on but really need to just take the time to really think it out as to where and when the best place to keep these things is. I’m sure there’s a reasonable solution.) Anyway, this IS more than I had been doing recently of the other form factor (a few years back I was doing more of that, but cut it back for various reasons), but I’m not sure I’m seeing much improvement over the old dose…which maybe your doctor would say indicates I’m not at a therapeutic dose yet.
        So, did you just experiment slowly until you got to that point? Did you have a specific game plan for when and how to increase? (Note, I don’t have much room to increase if I think I should max at 2 mg.) (and yes, I’m asking all these questions in full recognition that you are not my doctor!)
        And finally, the other thing (besides possibility of addiction) that still reins me in is the concern from a relatively recent study linking clonazepam with later alzheimer’s (though I’m not sure what all the other variables in the study were [age of subject, age when used clonozapam, how long, how much]; haven’t looked at it thoroughly or in awhile). What are your thoughts on that issue and how are you managing that complication? Does your doctor think that 2 mg is a low enough dose that it probably wouldn’t trigger that problem?
        Thanks again! You are one of the few people I know of whose doctor is looking to find the right (i.e. therapeutic) dose and not just fishing around (I liked what you wrote about your doctor really wanting you to get to that point). I’m now trying to do that, too.

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      • Carolyn,
        Ok, you are taking 1.5mg per day, but spreading it out pretty thinly. My Dr. would probably recommend adjusting timing before dosage, with .50mg after breakfast, and then a full 1 mg after lunch. If you are like me, you won’t need anything in the evening. Still the same amount of medicine, but a build up in blood level right before our escalation usually really kicks in. You could also try that 1 mg at dinner, but if you are like me, you may be quite drowsy and probably doze through your favorite TV show. 😀
        Clonazepam and Alzheimer’s, hmm? I read through the article on the Harvard.edu site and there may be correlation on this study, but they are not going so far as to claim causation. It is also very angled toward uses for benzodiazipines that are not what we BMS sufferers use it for. My doctor assured me that 2mg or below was not a worrisome dose, but I will ask him about this at our next check up and see if he has any thoughts on it. I will share them if he has any.
        Don’t neglect your hydration. I find that even with the increased relief I get from the dissolvables, I still need to keep very hydrated or it can lead to a miserable day. Let me know how you progress.
        Good luck!
        Kali’

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  3. Hi Kali,
    I also found your blog via the FB site when Dennis posted a link for us.
    I have had primary 1 BMS for 2 and a half years. I don’t need to say any more to you about that as you know exactly where I’m at.

    First of all I would like to say how much I have got from reading your blog. You are such a wise lady and write so well. I particularly liked the bit about how to relate to loved ones. I have been saying “l’m fine” for some time now., but it is so good to know there are others out there who know just how that feels. It’s all so exhausting and isolating in a way.

    I have a couple of questions about meds. My doctor is great and will let me try anything. Needless to say she had not heard of BMS and accepts I know more than her! I have been taking Lyrica for nearly a year and with her help have been ramping up and down the dosages settling on a low dose. I have had no side effects at all, but like you with Gabaten/Neurotin (which I think are similar) I don’t think it is working at all really.

    A few months ago we added .250 of clonazapam in the evenings. I have the regular tablets and dissolve them in my mouth to help me through the worst hours. I would like to try stopping the Lyrica and increasing the clonazapam to the dose you have found so helpful.

    I see from what you said in your email to Dennis you take .50 in the morning and .50 after lunch. Do you do this every day regardless then add on the extra .50 later?
    My main question is that unfortunately I don’t believe we can get the wafers in the UK although I will ask my doctor to try. Do you think it would work with the regular tablets? Have you ever tried the higher dose using the regular tablets?

    I am so thrilled for you that things are going so much better. Fingers crossed for me too.

    Thanks for your help.
    Dilly

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    • Hi Dilly!

      So sorry you have joined our group of chronic pain sufferers, but try to help where I can.

      .25 of Klonopin/Clonazepam would not be considered a therapeutic dose by my neurologist, but of course, everyone is different.

      To answer your question: I take .50 dissolved in my mouth in the morning after breakfast and brushing my teeth, and let it swish around for a good minute before swallowing. I do the very same thing after lunch, but depending on how I feel can take a .50 wafer or 2 .50 wafers for a combined 1 mg. dose. My neurologist will allow me to go up to 2 mg. per day if that was necessary, but I am at a good level with fewer side effects (only drowsiness) when I keep it to 1-1.5 mg. per day.

      I do this every day and will until that lovely day when there is no burning or tingling at all and I go into remission. Fingers crossed!

      I used the regular tablets this way, and although it took the edge off my burning at the same dosage, it was not nearly as effective for me. See if the wafers are available and try them if you can. I would not have believed the difference it made for me.

      Keep me informed on your progress and don’t lose hope. It took over 7 years for me to find something that works, and even now there is no guarantee that it will last, but I will hold on to hope and help others where I can. Good luck to you!

      Kali’

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  4. Just found it! I’m so glad to have found your blog and FB site and know I’m not alone with this horrible, depressing affliction. I’m spending tons of money and time running from Dr to Dr with no resolution. Right now I’m hoping that once I get off the Dexilant (a proton pump inhibitor for GERD and gastritis) it will be relieved. It seemed to appear after about a month on a PPI. Maybe though it was just a coincidence.

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    • Hi Suzy,
      Glad you found the Facebook group page. For those of you looking for it, just type “Burning Mouth Syndrome BMS” in the search box on Facebook and it should pop up. There may be other pages there, as well, but it will have the largest number of members.
      Suzy, GERD is one of the ‘horses’ of burning mouth syndrome and it was ruled out for me with a BRAVO test, but if you actually have GERD and gastritis, relieving them should help, not make BMS appear or worsen. A neurologist may be able to help you sort out the symptoms and let you know if it is possible the meds or the ailment has caused your BMS, but you may never know for sure. Let me know how that works out, and I will keep you in prayer for relief!
      Kali’

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