Cannabis for Burning Mouth Syndrome?

As many of us do, I haunt the online forums looking for new information or even unusual coping strategies for Burning Mouth Syndrome.  Interested in learning more about this mysterious chronic oral pain? Check out the BMS Support Website.

As I read the entries, questions, and answers, I realize that many people who are looking for Burning Mouth Syndrome support are not reporting its symptoms. Often, they are reporting much more worrisome symptoms like sores and lesions, extremely dry and cracked tongues, and other varied complaints regarding other parts of their bodies. I find myself thinking over and over, “That is not primary BMS. They need a second opinion and to investigate other underlying disorders.”

You see, primary BMS is invisible. I am not kidding! If a doctor (and believe me, I have had quite a few) looks into my mouth and throat even when I am burning most intensely, they will see nothing unusual. That is a hallmark of this syndrome and if you have visible symptoms, please seek a different diagnosis. It may be another condition that has a cure or medicines that can better treat your symptoms.

Wouldn’t that be great?

The other issue that has been floating around for ages but has gained traction as states have legalized marijuana for medical reasons or in general, is the question, “Could cannabis or CBD oil help with Burning Mouth?”

Since I can find few scientific studies (Please alert me if you find something recent!), I am left with anecdotal evidence, which is not great. Often, when people report anecdotally, I note that they are also reporting a myriad of other symptoms from diabetes to peripheral nerve pain and I am almost certain that primary Burning Mouth Syndrome is not their major ailment. It’s a complicated picture, but one I hope that some researcher will find fascinating and make a statistically relevant study. I predict my fellow sufferers will try this treatment if it becomes legal and available and although the thought of actually putting something hot and smoky in my already burning mouth makes me recoil from the idea of ever smoking marijuana, I would probably be open to trying the oil or an edible form to see if it helped.

There is one study that included Burning Mouth Syndrome and cannabinoid receptors, but it was four years ago, only involved sixteen subjects and concluded that the eight Burning Mouth Syndrome sufferers had “increased TRPV1, decreased CB1 and increased CB2 expression in tongue epithelial cells also associated with a change in their distribution. It would appear that these receptors are related to BMS. These data could be useful for future characterization of BMS epithelial markers and therapy.” This small study could give hope for a diagnosis protocol, but it offered no evidence of symptom relief. You can read the abstract HERE.

The dangers? 

That is something to discuss with your doctor, my friends. As with any medicine, there may be side effects and you should be as careful with this one as any. Follow instructions, and don’t drive or drink alcohol with it since you may be impaired or at least drowsy.

The benefits?

Unknown. Perhaps some of us will find relief with this treatment, but if my anecdotal reading is picking up anything, it is that few are saying it helped their Burning Mouth Syndrome pain.

Want to see what Politifact says about Cannabis Claims? Check out http://bit.ly/2qNG9Yt and see what is being said, and how true the statements are.

We will see, but meanwhile, keep your coping strategies going, take any medicines that help and don’t have more side effects than they are worth, and we will all hope for two things in our immediate future…a standardized test for diagnosis, and God willing, a cure.

27 thoughts on “Cannabis for Burning Mouth Syndrome?

  1. I have primary BMS; meds I take are: Clonazepam, Gabapentin and Duloxetine. A few months ago I decided to try CBD/THC, the ratio of which is 10:1. I use a tincture form twice a day and have found that this has helped my condition immensely. At my last appt. with BMS doc, he was very pleased about my using the above and I now use about 1/3 less of Clonazepam. (Other two drugs are very low doses.)

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    • Barbara,
      I am glad you have found a combination that is working for you. Experimentation is often the key to finding the right coping strategies and pain-relieving meds. It seems to be highly individual. I have tried CBD Oil without much effect and do not have a legal way here in Texas to purchase anything containing THC in a therapeutic level. Perhaps things will change here, but it may be years or even decades.
      Kali’

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  2. I believe I have BMS. I have recently discovered that having an edible (marijuana) made things feel worse. It may be in the sub ingredients I use to make it. Maybe the chocolate has something different in it but it definitely hasn’t made my BMSand better.

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    • Jo,
      I have not tried the edibles, so thanks for sharing your experience. Right now it is so subjective because no studies have been done on marijuana and burning neuropathy so it is a “wait and see” situation. Now the question has been raised about the difference in how men and women experience pain and how medicines designed for men may not be as effective for women. Fascinating stuff and you can read about it at the BMS Support Website under Research and Studies. https://www.bms-support.org/research
      Good luck to you and stay in touch!
      Kali’

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  3. I’m a primary BMS sufferer and have been for the last 6 years beginning at 42 years old. I’m fit, active, don’t drink or smoke and not menopausal. I don’t fit the usual profile for this at all! The only thing I can figure is that I had ptyalism (was excess saliva) during three pregnancies. Maybe it’s connected? Anyway, I’ve tried it all! The only thing that sort of helps is a low dose gabapentin at night. It helps (sort of!) to reset in the morning so I wake up with less pain than I otherwise would. I sure am hoping CBD oil will help. I got some samples to try. If it works I’ll check back and maybe see if the CBD community will give me a kick back if I become their spokesperson!

    Like

    • Rebekah,
      I am sorry for not noticing your comment more quickly! I hope you have found your way to the Facebook Burning Mouth Syndrome Group and have connected to thousands who care. It is a frustrating and confusing chronic pain to deal with and you don’t mention how long you have suffered with it, but be careful not to let the persistence of it get you down. Depression is something most of us deal with at some point in our journey and there are always people who care just a phone call away.
      Wishing you well,
      Kali

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  4. I have Bms & had it for a year. The meds. I’m finding that are recommended for it are for depression,anxiety and such. I don’t suffer from any of those symptoms. Maybe bp.pills? Tried to go off & didn’t really help. I’m on thyroid meds. For I no longer have a thyroid. Changed the brand and that didn’t do anything. I’ve been drinking the same red wine for years? I have been smoking cannabis more? I just want to find some relief. Stopped drinking my well water which my gp. Recommended. Just hoping to help this research. 🤔

    Like

    • Jody,
      Your comment is a little difficult to follow, but I urge you to consider that your burning mouth may be caused by issues caused by lack of thyroid or meds you take for it, and if you could address those issues you might not have the burning.
      If it is separate from the thyroid then a visit with a neurologist who has treated BMS could be very helpful. The recommended meds for BMS are often anti depression, anxiety, or convulsion meds because all of those seem to help with the constant firing of the nerves that cause this neuropathic pain. Taken at a lower dose than would be used for those other ailments, people with BMS can get some relief from their pain. Again, only a doctor can tell you what might work for you and it often takes some time and experimentation to reach the optimal dose that gives you relief. Does smoking cannabis seem to lessen your pain? A pain diary can help you track how these different things you are trying actually affect your pain and you may luck into a coping strategy that really helps. Good luck!

      Like

    • Jody, I have had BMS for several years. I echo what Kali wrote above. My oralmaxilofacial doctor prescribes three meds for me: Clonazepam, Gabapentin and Duloxetine. The first and third drug are considered to be off-label; i.e., research has shown that other ailments, other than what they were intended for, are helping me. All of my doses are considered quite low and I have no side effects. I also am on synthroid and ambien meds. A year or so ago, I tried medical marijuana which lessened the burn. After hip replacement surgery ten months ago, I stopped the m.m., but make sure I keep a supply at hand should the need arise. Best to you.

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  5. Hello

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    Like

    • Kathie, you are welcome to publish a link to A Burning Journey on your site, but unless a link to BMS relief is found, it is not a subject I will probably write much about. Thanks for asking! Kali’

      Like

  6. I developed Primary or Idiopathic BMS 7 years ago, age 58. I had to leave the state I live in for an accurate diagnosis. I saw a third if dental specialists in my state, multiple neurologists in my state and all punted to each other and informed me they had no clue at all what I had. Out of state I went to see a Orofacial Pain Professor of Dentistry who made the diagnosis at a 2.5 hour consultation. He recommended I try Neurontin (Gabapentin) and Klonopin. I worked with Klonopin for about 5-6 months and discontinued due to negative effects. I have continued the Neurontin albeit a dose 200 mg. every 24 hours. The Neurontin knocked out my white blood cells and I had to d/c it for awhile and have resumed the 200 mg. once daily.

    Anyway, I’ve never smoked anything in my life. Cannabis became medically legal in my state about 2 years ago. I refused to smoke or vape it. However, at a cannabis dispensary I found a capsule form that is predominantly THC, as in 10:1. I only take one capsule about every 2 weeks. I take it at 10:00 pm. I sleep like a baby (have wicked insomnia normally) and I have to say, I have ZERO ORAL BURNING OR PAIN the next day, ZERO and I’m not exaggerating. It’s like a miracle and if you knew me personally, you’d know I’m so not medication inclined. I’ve always leaned Holistic, use Acupuncture, alternative medicine, yoga, massage, etc. Still, that 1 capsule gives me about 21-22 hours of TOTAL PAIN relief. I’m unable to take it every night because if I do, it jacks up Endometriosis pain for me – so that is why I do not take it on a regular basis. There are cannabis receptors in the pelvis. For anyone reading, I swear I do not get ‘high’, I do not hallucinate, I do not feel paranoid, I do not feel strange or buzzed, dizzy in any fashion. The first couple of times I tried the capsule, I felt lethargic the following day. However, this effect has gone away. I was exceedingly reluctant to even consider trying cannabis for the BMS pain but glad that I did. I also tried CBD Tincture but I never found any pain relief. Maybe I needed a different strain, or maybe I needed to take it a month or longer but for me, CBD didn’t offer any oral pain relief. I only share this information in case anyone with BMS is thinking about trying cannabis but fearful of trying it, or fearful of THC. There are Tinctures you can place under tongue and capsules. Our state doesn’t allow edibles, so I’m limited. I like this simple capsule at bedtime that literally takes ALL pain away and the Prescription meds never have. They’ve only lowered the intensity of pain.
    The strain of cannabis I take for BMS pain is called “Grandaddy Purple”. There are so many different ones but this strain has worked like a miracle for me (when I take it).

    Like

    • Lisa,
      I am so sorry you have gone through so much to get a diagnosis. I wish I could say it is unusual, but I am afraid many of us experience that particular merry-go-round of specialists at the beginning. Your experience with THC is intriguing. I live in state that doesn’t allow much of anything and have not tried it, but I would be interested to hear from BMS sufferers in more liberal states who have tried it!

      Like

  7. Kalipr,
    Just to be clear the state I live in ONLY allows low, low, low dose cannabis. I’m not on West coast. My acupuncturist was the one who ‘encouraged’ me to give it a try and my prescribing physician was also encouraging/supportive. If you never try, you never know and sometimes the pain level can be at 10 or higher later in day or evening. I was reluctant for a year+ to try it. I want to be clear despite the THC ratio of 10:1, the THC is super low level compared to more liberal cannabis States. I probably could not even tolerate their potencies. I’m very sensitive to medications and have never used cannabis in my life. All of our physiology and chemistry is so highly individual, what works for one person may not for the next. I only wish I could take it 2 or 3 times a week as the pain relief has been incredible for me. As with other BMS sufferers, I also am very aware STRESS can escalate the pain off the charts. There are a number of Functional MRI studies out that demonstrate areas of the brain for BMS sufferers do not work properly when compared to controlled groups without BMS. Biopsies of BMS tongues compared with non-BMS tongue biopsies also demonstrate Neuronal destruction of the myelin sheath which covers the nerves to protect them. Like a covering over an electric lamp cord. So tongue nerves have lost their protective covering. Since BMS doesn’t kill people and happens to older population, there is little to no interest in research grants. Lisa

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  8. Kalipr – I found your site while specifically searching to see if there were any studies re: THC/CBD and Burning Mouth Syndrome. I feel like I am about to have a total breakdown and am grasping at straws.

    I was diagnosed with severe endometriosis when I was 19. I had 13+ (stopped counting) laparoscopic surgeries performed on me over the years – ending with a partial hysterectomy at 38. Yes – partial which does not make any sense – then had my right ovary removed two years later. The foregoing surgical procedures resulted in hypertonic pelvic floor dysfunction. Took A LOT of internal physical therapy where my therapist taught me how to focus on trigger point relaxation. Not perfect – and it requires almost daily work (luckily, my therapist taught my SO how to do some of it with me).

    After my partial hysterectomy, I still was experiencing quite a bit of pain (which was very disappointing because I had always been told that once I was ready to have a hysterectomy, I would finally have relief from my horrible pelvic pain). No one knew what to do with me (except prescribed drugs – which didn’t address the actual problem (plus, was not feasible due to being a single mom + trying to make partner at my law firm). A legal secretary “diagnosed” me with interstitial cystitis one day – and she was correct.

    I’ve had quite a few other idiopathic diseases/syndromes/health issues over the years – basically, left me feeling like either (i) God hated me/I was one of the unluckiest people alive or (ii) there had to be a common underlying cause. I did a ton of research (have lots of time when you can’t sleep at night). I limit most of my research to PubMed (I have a science background – chemical engineering undergraduate degree). One night I stumbled upon a 80+ medical paper related to Mast Cell Activation Syndrome (MCAS) – and I felt like I was reading about myself! I contacted the author’s office the next day by email, and received a reply in less than 48 hours (I was told that it seemed quite likely that I had some form of mast cell disease).

    I was hoping that would lead me to some type of “cure” – but it just led me to trying to find ways to manage my mast cells. Some symptoms and/or diseases/medical conditions I have that are linked to mast cell disease (in addition to endometriosis and interstitial cystitis) are: migraines/lichens sclerosus/obstructive sleep apnea (despite not having the typical risk factors for OSA such as excess weight, being male, being older, use of alcohol, smoking, etc), thickening of left ventricle wall, severely allergic to insect venom, unexplained trips to ER for anaphylactic shock caused by allergic reaction with unknown triggering event, joint pain, and BURNING MOUTH SYNDROME!

    FYI – I had searched many times for possible causes of endometriosis + interstitial cystitis because they are known as the “evil twins” – definitely appear to be linked by a common underlying cause. The night I found the paper on MCAS, I searched for endometriosis + IC + BURNING MOUTH SYNDROME. By linking those three health issues together – I was led to the paper by Dr. Lawrence Afrin.

    The reason I’m sharing this is because I truly feel like mast cells are underlying my BMS (and probably many other people’s BMS). When I read what Lisa wrote about the destruction of the myelin sheath thereby causing the nerves in the tongue to be unprotected, that sounds exactly like what happens in interstitial cystitis. The GAG layer (of the bladder epithelium) – has a primary role of providing a permeability barrier in order to prevent the penetration of toxins/pathogens into the bladder wall. When the GAG layer is missing, the bladder wall may be penetrated by substances that cause neural activation and trigger an inflammatory response.

    Stress is a huge aggravating factor related to my IC and has the ability to trigger extremely painful flares. Stress aggravates my BMS in the same exact manner.

    My BMS began back in 2013. While it was painful, my flares never lasted more than 3-4 days (and I could get them under control by reducing stress + using Magic Mouthwash. I started having a bad flare at the end of last summer. It was going on for 7-8 weeks straight – the only way I had relief was when I had ice chips or Magic mouthwash in my mouth (and eating sometimes seemed to distract me from the pain a bit). I was a mess.

    My doctor prescribed amitriptyline (made it worse) and then gabapentin (didn’t help + I didn’t like side effects) – doctor didn’t have any other options except referral to neurologist. I read studies about clonazepam – and another one of my doctors prescribe me some to try. As soon as I chewed up the pill, I could feel “something” happening on my tongue. There are mast cells on your tongue – and benzodiazepines have been shown to have mast cell stabilizing effects (in addition to their effect on benzo receptors – which can be helpful where anxiety is a prominent feature of MCAS.

    Within 24 hours, I felt 50-60% better. By the end of 48 hours, I felt 80% better. Everything was great – until my pharmacy switched manufactures for my clonazepam. I started using the new ones (now green instead of blue) – and my BMS retuned with a fury. It took a ton of phone calls (and a lot of time) before I found a pharmacist (owner her compounding pharmacy) who offered to purchase the first type of clonazepam. People with mast cell disease can have reactions to many of the expedients used when making pills. Generic variations of medications can have different binders/filler/dyes – some of which are known to cause issues for patients with mast cell disease.

    I’ve been taking the new (old) clonazepam that the pharmacist special ordered for me for four weeks now – but for some unknown reason, IT ISN’T WORKING LIKE IT DID THE FIRST TIME!

    I am completely miserable. I am in tears while I’m typing this.

    I cannot continue to live like this.

    I’m desperate – thus my search to see if THC/CBD could possibly help BMS.

    Like

    • Dani,
      I am so sorry you have experienced so much, but I must say that after reading through every single abstract and study on the Burning Mouth Support website, I too suspected Mast Cells, and I still do. I agree with what you are saying, and although you don’t mention where you live, I am wondering if you are using the Clonazepam Orally Dissolving Tablets (ODT). They are small and white, and I dissolve them on my tongue as you describe twice a day. They are the only thing I have found in all of these years of suffering from diagnosed Burning Mouth Syndrome that actually mitigates my pain. The side effect can be drowsiness, so I carefully time my doses and combat the drowsiness with iced tea or coffee. Talk with your specialist (I have had the best service from Neurologists and Pain Management doctors) and see if trying this formulation might provide you some additional relief.
      As for THC/CBD – I have no idea and live in a state that will make it quite difficult to even investigate it as a possibility. I would never smoke anything (the very idea of something burning near my mouth is unthinkable) but would try edibles or drops if they were available.
      Like you, many of us are searching continually for something that can help us cope with the chronic pain, the stress caused by chronic pain, and the fear that this may never end. Is Cannabis the answer? I don’t know, but if you are successful, please let us know.
      Reach out for emotional help if your thoughts remain too dark to bear and keep talking about your feelings. They are valid and without expression, they can do you real physical harm. My thoughts and prayers are with you.
      Kalí

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  9. Kali’ – the clonazepam that initially worked for me (but isn’t working now for some unknown reason) is just a regular tablet that I chew up and than hold in my mouth. It is manufactured by Accord. It took me awhile to find a pharmacist who would special order it for me. I was so excited when I picked it up – bc I was expecting the same results as last fall. However, it seems like it’s not working at all this time – and I don’t understand why.

    My current plan is to have something compounded for me by my pharmacist. It will be $$$$ (insurance won’t cover it – at least not without a fight that will take some time). However, I am barely sleeping = my mouth isn’t “resetting” like it typically does overnight. I am in less pain first thing in the morning, but it doesn’t take very long for the pain to ramp up – and then I’m miserable again.

    It would definitely save me some money/time if the orally dissolving one works for me. While I know that people with mast cell issues have different triggers, I would really like to try the exact one that you use to see if it will work for me. I would really appreciate it if you wouldn’t mind sharing the exact type you use (manufacturer + dosage), plus the schedule of how you use it. I have avoided swallowing the clonazepam because I hate feeling tired/drowsy. Unfortunately, due to my interstitial cystitis, I cannot mitigate the drowsiness by using iced tea or coffee because caffeine really hurts my bladder.

    I hate taking all meds. I’ve been in pain management for over a decade – and I hate taking my pain meds. Also, it seems like my body is reacting worse to them – I am nauseous a lot these days.

    I do not live in a state where medical marijuana (much less recreational) is allowed. However, I live close to the neighboring state where it is allowed – so, it would be pretty easy for me to try. I would never smoke/inhale it (and that was before I ever had BMS) + I don’t like feeling loopy. I am so desperate that I am willing to try/do basically anything.

    I appreciate your words re: my emotional health. I have always been a strong person, but I am really struggling. It’s also difficult because I feel like people just don’t understand how debilitating BMS can be. There are times that I wish that my family/friends could experience how this BMS flare feels for just an hour or two in order to be able to understand how horrible it is. I’d rather have a flare up of any (or all) of my other painful health issues vs. dealing with this BMS flare. It makes me feel like a baby – but I really cannot live like this for the next 5, 10, 20, 30 years.

    I really appreciate your reply.

    Thanks,

    Dani

    Like

    • Dani,
      I take Clonazepam Orally DIssolving Tablets made by PAR Pharmaceuticals in .50 mg. strength. I dissolve one on my tongue before lunch and another before dinner and the drowsiness is the only side effect. Seriously, if you can, take a nap when you feel drowsy. When I am able to, it resets my pain cycle completely and is very refreshing. These are only available by prescription, but using a service like GoodRX can find the best price for them. If you haven’t seen a Neurologist, that might be your best bet for tracking it down if you both decide that is the way to go. Also, discuss other stimulants or teas you might try to address the drowsiness if you are interested. There are other choices, I just like green tea and it doesn’t have any issues for me.
      I hope that this helps you, Dani, and wish you the best of luck in trying medical marijuana. If it works, I would love to hear about it!
      Kalí

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  10. Pingback: Cannabis and Burning Mouth Syndrome…Continued | A Burning Journey

  11. I think there is some hope, I just went to my doctor today with BMS, I had it a couple of times in the past few months and this is day 8 for this time. I have always been prone to cold sores which is from the herpes virus. My doctor prescribed valacyclovir 500 mg to take twice a day for the next 10 days. I took the first pill a few hours ago and I do find it is making the symptoms subside ( I can feel my lips again) He also told me he had a patient a few months ago with the same symptoms and this medication worked for him. I am leaving for holidays for a few months, I will try to remember to come back to this site and give an update once I finish the prescription to give you all the results, but I just wanted to write this now because my anxiety has completely gone once I heard there was hope that this could be fixed. I live in Canada with excellent access to health care and meds but I hope everyone on here is able to get some relief

    Maureen

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    • Maureen,
      How wonderful for you! If your burning is indeed caused by herpes (HSV-1), Valacyclovir is the way to go. I ruled out HSV-1 years ago and recommend everyone with suspected BMS get that one off the table if you can. It’s a simple test.
      Best of luck to you, and I hope this is the end of your personal burning journey!
      Kalí

      Like

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