July 2 – Burning Mouth Syndrome & Me

Kaliby Kali’ P. Rourke

Burning Mouth Syndrome (BMS): “Chronic burning pain in your mouth. The pain from burning mouth syndrome may affect your tongue, gums, lips, inside of your cheeks, roof of your mouth, or widespread areas of your whole mouth. The pain can be severe, as if you scalded your mouth.”-MayoClinic.com. ABC News covered it in a piece called “The Mysterious, Agonizing Pain of Burning Mouth Syndrome.”

There is no conclusively identifiable cause, no assured treatment and definitely no cure. The few research studies out there note a correlation between depression and BMS, but neglect to ask,”Which came first?”

In my case, the BMS definitely caused depression; not the other way around. Researchers suspect dental work, dense nerve tissue in “super tasters,” hormonal links, or neurological damage, but no one knows for sure.

I have been battling burning mouth since May, 2008, and after a hectic flurry of exams, specialists, tests and possible diagnoses over the first year or two, we settled on this bizarre syndrome that affects less than 1% of the population. Oh, how special!

I will not take you through the gritty details of everything I have tried; nerve blocks, GERD testing, vocal cord scoping, oh my! At this point I merely manage the pain and try to keep its effect on my life to a minimum. Most days I am fairly successful, but occasionally stress or other factors overwhelm even my best laid coping strategies and I must turn to medication. A small dose of Clonazepam (Klonipin) seems to make me drowsy and interrupts the escalating cycle of pain so that I can get through my evening. The only times I do not burn are when I eat, drink or cry.

I know I am not alone, but as those of you out there who have suffered from chronic pain know so well, sometimes it feels like it is just you and your constant companion. In fact, isolation becomes the additional thing you must battle. You have told everyone who needed to be told and there is nothing new to tell, so you stop talking much about it. When people ask how you are, you say, “Fine.”

And you move on.

I recently decided to talk to a counselor.

You see, I needed to talk to someone who would not be burdened with my pain; someone who did not feel for me personally, other than professional empathy with good boundaries.

Why?

Because I needed to vent without regard for the other person’s feelings, our future relationship, or any of those considerations that come into play when you talk to people you love, and who love you.

If you are dealing with chronic pain, whether it is physical, mental or emotional, I hope you will feel encouraged to reach out and find help and support. Sometimes your family and friends just aren’t enough, no matter how much they care.

Kali’ P. Rourke is an avid philanthropist and volunteer in Austin, Texas, serving on the board of the Seedling Foundation, Impact Austin and the Texas Advocacy Project.

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58 responses to “July 2 – Burning Mouth Syndrome & Me

  1. Thank you for sharing your story, Kali’! There are so many people who suffer from conditions such as this that can’t be seen by others, it can’t be easy.

  2. Wow, this sounds like eating hot chili with no relief! My condolences. Thank you for the information on this dreadful condition. Best wishes for a miraculous recovery.

  3. Thank you for this, Kali. I can only imagine how hard this must be to cope with and I suspect you’re not alone in coping with this. Speaking out about it just may help someone else know they’re not alone with it. I pray you’ll find relief from this dreadful condition.

  4. If you, or someone you know develops this, one of the most helpful sources of information I have found on the Internet is actually the BMS Support Group on Facebook (https://www.facebook.com/groups/55906216391/). You have to wade through stuff to get to practical info (there is a files section), but it also obviously serves as a support system for people all over the world who seem to lack them. I am fortunate to have coping strategies and well, my counselor let me go. Really. She said that I was handling chronic pain as well as she had ever seen, and so unless things get bad and I feel like I need it, she was comfortable concluding our sessions.
    I know she is right. There wasn’t much she could recommend that I wasn’t already doing, but she did ask incredibly insightful questions and one of them was, “Why do you think you are not still in the ‘Why Me?’ stage? Many people stay there for years.” I thought about that and said, “Because I decided not to stay there. I moved on, did what I could and found strategies to handle the day to day pain and discomfort. It was definitely a choice.” Choosing to go forward and keep making a difference actually makes a difference. Thanks for the friendly ear, ya’ll!

    • NOTE: I have discovered that the link I listed up above for the BMS support group on Facebook takes you to the page for people who are already members, and so there is not a “join the group” button visible. Please put Burning Mouth Syndrome (BMS) into the Facebook search box instead, and you will go to a closed group that you can then ask to join. Sorry for the confusion!

  5. Kali’, as a therapist, I am very grateful for your eloquence in expressing the role of a counselor. So many people know only the historic role of psychotherapy as an attempt to cure mental illness, which is now treated as a medical problem and called Behavioral Medicine. The role of the modern counselor is, as you said, to listen with compassion and without judgement, providing a place to be heard with no other reaction but support. I hope you won’t mind my quoting you. I wish you relief from your chronic pain and success in living vibrantly. You’ve really nailed the choice that works, and you’ve stated it so well.

    • Samantha, you are more than welcome to quote me. I truly believe that if there is any higher purpose to this experience, other than making me a stronger person (as difficulties often do), it is to encourage others who are traveling a similar road. Thanks for the kind words.

  6. As I read your saga with chronic pain it brought back the pain I felt as a mother when my son suffered from chronic pain due to a work related injury. I SO felt the need to “fix” it even though I am a therapist by profession. And, yes, he would testify that it was a very isolating experience. He also gravitated to Zen Buddhism and engaged in meditation. Have you ever had any energy work e.g. Reiki or Healing Touch? That could be an adjunct to your therapy.

  7. I get this burning in my mouth due to fumes from medication my husband uses for arthritis. it really is bad, glad to know I am not the only one with this problem

    • Estelle, although you may have correlated the burning in your mouth with the smell from your husband’s medicine, the research is indicating it may be the other way around. BMS sufferers, for whatever reason (hormones, thyroid, who knows?) often experience heightened or distorted smells and tastes. The fumes may have become unbearable because you had become more sensitive to strong smells. It is so tempting to try to blame this on one specific cause and think, “If only I hadn’t had those teeth worked on, or hadn’t smelled that strong smell, or hadn’t gone through pre-menopause or menopause…”
      But the reality is that all or none of those things may have been the causal agent. My suspicion is that if they ever do some intensive research into this, they will find that a combination of factors cause it, and that may be part of why it is so hard to treat and at this point, impossible to cure. All we BMS sufferers can do is cope, hope and keep going forward, because as the old saying goes, “It is hard to trip on something that is behind you.” Wishing you good treatment, coping strategies and a quick remission.

  8. It’s nice to find a web site with someone who understands. I wish someone had an answer or a fix for burning mouth syndrome, I just pray a lot and hope for a healing.

    • I do the same, Lynn. I have others praying for me, too. A day does not go by without me asking for remission or healing.

  9. I have suffered burning mouth syndrome for the past 3 years. I have seen doctors, dentists, etc etc all to no avail. I have been prescribed everything from anti depressants, lipoic acid (that helped for a while), special diets, all manner of other drugs etc etc. No relief whatsoever. 😦
    I n desperation I am now seeing a naturopath/homeopath. He says my system is toxic and my liver diseased. I need to get my system” cleaned out” and working properly again. He has started me on a large teaspoon of Bifidus (purchased from any health food store) each morning before food (must be left to stand in a glass of purified water for 5 minutes before drinking) – plus 2 “special” sprays he has made up – one for the liver, the other for the toxemia. I take one squirt of each spray morning and night. I have no idea if this will work, but he assures me it will. I have been seeing him for 1 month so far. I have noticed a change to the type of burning – but not a cure. I have had short periods of no burning. (several hours – not days) I had my second visit today and he is confident things will improve. If anyone would like his details Im happy to share.

    • Diane, I hope that this does help you, but must confess that I have seen many regimens like this outlined on the BMS Support Groups and Forums and have yet to see one that actually had long term relief or anything close to a cure. Perhaps you will be the lucky one, but do be very careful about the “special sprays” if they are from a compounding pharmacy. I paid a large premium for one myself at the beginning of this journey the second time around, and not only was it ineffective, but now that very compounding pharmacy is under investigation (along with many others) for lack of sanitary procedures. Err on the side of caution and keep working on coping strategies in case this does not turn out to be the solution. Sometimes feeling like we are doing something may help as much as what we are doing. Good luck!

    • I have had BMS since April 2013. Thank you, Kali’, for posting this. I find chewing gum helps and Miracle Mouthwash, prescribed by the dentist.. Besides the burning, I also have what feels like bubbles in my mouth and also the tissues on my tongue raise up. I’m wondering if you have this as well. Have you seen improvement, Diane, from the naturopath/homeopath?
      I’ve thought about seeing a counselor, but haven’t yet.

      • Mary,
        So sorry, but I missed your comment here for some reason. The burning sounds like BMS, but the bubbles and raised tissues on your tongue do not. Classic primary BMS has no visible symptoms.
        I hope that you have undergone blood tests by your primary physician and have ruled out vitamin deficiencies (this often shows up in BMS sufferers and can give some relief when addressed) and thrush (a yeast overgrowth that can really irritate our tongues).
        It is a great idea to rule out the obvious suspects and I pray that yours is a case that can be easily treated.
        Re: Miracle Mouthwash – most formulations contain the following in varying amounts.
        An antibiotic to kill bacteria around the sore
        An antihistamine or local anesthetic to reduce pain and discomfort
        An antifungal to reduce fungal growth
        A corticosteroid to treat inflammation
        An antacid to enhance coating of the other ingredients inside the mouth
        Mayo Clinic cautions folks about using this without knowing what is causing their condition and I can see why. Let’s say you have thrush but don’t know it – the antifungal and steroid will possibly cancel each other out , where an antifungal alone would probably cure you. Combine that with an antibiotic that can kill bacteria, but also kill healthy flora that contain yeast overgrowth, and you can see where I am going here.
        I am not saying not to use it, but I would not unless I had talked with my Doctor about the possible interactions.
        I hope you are doing better, and no longer need this information at all!
        Kali’

  10. Estelle, although you may have correlated the burning in your mouth with the smell from your husband’s medicine, the research is indicating it may be the other way around. BMS sufferers, for whatever reason (hormones, thyroid, who knows?) often experience heightened or distorted smells and tastes. The fumes may have become unbearable because you had become more sensitive to strong smells. It is so tempting to try to blame this on one specific cause and think, “If only I hadn’t had those teeth worked on, or hadn’t smelled that strong smell, or hadn’t gone through pre-menopause or menopause…”
    But the reality is that all or none of those things may have been the causal agent. My suspicion is that if they ever do some intensive research into this, they will find that a combination of factors cause it, and that may be part of why it is so hard to treat and at this point, impossible to cure. All we BMS sufferers can do is cope, hope and keep going forward, because as the old saying goes, “It is hard to trip on something that is behind you.” Wishing you good treatment, coping strategies and a quick remission.

  11. To all of you who have commented, thank you! I have been contacted by a news media company to do an interview about my experience with BMS and my hope is that some day soon you will see a news piece about burning mouth syndrome that will at least raise awareness. On another front, I have discovered that the link I listed up above for the BMS support group on Facebook takes you to the page for people who are already members, and so there is not a “join the group” button visible. Please put Burning Mouth Syndrome (BMS) into the Facebook search box instead, and you will go to a closed group that you can then ask to join. Sorry for the confusion!
    Good luck and my prayers for comfort and strength go with any of you coping with this particular dragon.

  12. Hi to everyone 🙂 I have suffered from BMS for about 4 yrs. It has got a lot worse in the last 5 weeks at which point I started to search for others who also suffer. Thanks to all who have shared as it takes away the loneliness and some of the fear. I would love to see this made public knowledge as my doctor has never heard of it and others like to tell me its in my head or anxiety. I pray for some type of cure and until that day I just pray we all learn to live with this pain and become better within ourselves. Sending hugs to you all 🙂

    • Kristy,I to suffer from bms.I’ve endured 24 yrs of this debilitating condition.I feel for you.I’ve been everywhere in the Boston area.Saw the best Drs.Had every medication you can think of.I also had accunpuncture, and went to 3 healing get priests.A friend took a trip to Lourdes in France,took me holy water.Believe me,some days I want to end my life.I suffer from depression.

      I’m in bed most of the day.My life is no longer a life full of energy and wanting to participate with friends.My body is tireing.I’m 66 yrs old.It’s getting tired.I don’t know how much longer I can hang.I currently belong to a pain ctr.I’ve been getting nerve blocks once a month.I really can’t say they do much.I’ll keep you in my prayers.If it wasn’t for my faith to carry me through,I would have been gone long ago.If I could be of any help,feel.free to contact me..

  13. The interview has been aired and if you are interested, you may find it at http://kalipr.wordpress.com/2013/12/14/burning-mouth-syndrome-my-tongue-is-a-star/
    It is meant to raise awareness, and so there is no new news there for sufferers (not that there is any to report, frankly) but it was their hope that raising awareness would allay the experience that we often have, where we are more informed about BMS than our care providers. Good luck to everyone out there who struggles with this mysterious and chronic pain and let’s keep talking until we find something that works!

  14. Carolyn Sterritt

    I suffered for over a year, several years ago, with BMS, then it went away. I am suffering again and am looking for support. I’ve read that B12 deficiency may be a factor. I have pernicious anemia (the inability to absorb B12). I go to my internist for an injection monthly. I wonder if I am getting it often enough. I also take thyroid medication as I had my thyroid removed because of Graves’ disease as a teenager. Both conditions are auto-immune conditions and I wonder if BMS might be?
    I am very depressed and get afraid to eat. Today I had whole grain bread with peanut butter, jello, and a baked potato. I’ve given up coffee, anything with sugar like ice realm, and now I’ll try gluten. I’m making a doctor and a counselor appointment tomorrow. Thank you for support.
    Carolyn Sterritt

    • Carolyn,
      I have seen many people on the BMS Support Group Facebook page say that they have a variety of autoimmune issues and developed BMS. This is what the specialists call “secondary BMS” and in some ways it is harder to diagnose than primary BMS because the underlying conditions can fuzz the picture up so much. Many of us (primary and secondary) test low for B12 and D3 and supplementing those are a good first step. Do check out food allergies or issues from your thyroid, since those can be large contributors to BMS, as well. When all else is ruled out, only then will most doctors concede that it is BMS and a neurologist may be your next stop in order to try Klonopin/Clonazepam and/or Neurontin/Gabapentin, which are the usual drugs used to deal with the syndrome. I wish you great luck, and while you are ruling things out, be sure to practice self care. We all agree that stress and focusing on the pain make it all that much worse, and coping strategies are key to keeping our eyes on the prize. Do what relaxes you, get plenty of sleep and fluids, and be open to trying new things. Hugs.
      Kali’

      • marvalousmarva

        Working with a neurologist who deals only with holistic remedies, I have learned that a great deal of pain is emotional and caused by stress. After blood tests, he put me on a diet of supplements including B12, D3 and Zinc and I can attest to the healing powers of this approach along with other natural stress relievers including exercise.

  15. Kali what a wonderful articulate article on this disorder I have suffered from for 8 years. I also have went the full trip of dr and dentist one after another finally gettining a diagnosis from a department head at OU school of dentistry but each dr, dentist, psychologist and witch doctor along the way has prescribed some new medicine all of which I am still on but they really don’t help. I have went the holistic approach, acupuncture and many other things that have cost thousands of dollars as I am sure many of you have niot to mention the heart breaking disappointment every time you get your hopes up and it does’nt work. My question is what would it take to form an organization to educate people about it and raise some money for research, look at how many interested people you have here. Off the topic but has anyone been keeping up with the research. Being done in Colorado ? They implant a microchip at the nerve site and the brain signal hits the chip instead of the nerve, the last research paper the dr was getting 60-70 percent success rate but it’s been quite a while since I have heard anything new-for those of us with cranial nerve damage it’s at least a hope

    • Wendy,
      I am sorry you have had to deal with this so long. The current pundits say that it lasts an average of 7 years, but after meeting so many sufferers from around the world on the Facebook support group, I see people suffering from it for more than 20 years. I see young, old, pre, peri, meno, and post menopausal women suffering from it, and a variety of men of different ages. It is a baffling and depressing syndrome, and I sincerely send prayers and thanks to the medical professionals out there who encounter us, listen, do their research, and treat us like the chronic pain sufferers we are. I have not encountered a single BMS sufferer, whether it is primary or secondary, who has been able to definitively point to a therapy or medicine, whether Western or Eastern, and say, “This cured me.”
      That population may be out there somewhere, but they aren’t talking anywhere we are hearing.
      Your question about an organization to support research in this area is a valid one, and many folks on the support group have “flown that balloon,” as well. As they investigate, however, they run into a blockade of difficulties, not only in the formation of a foundation or nonprofit itself, but in the amorphous aspects of the syndrome. So far, no national or International celebrity has come forward for this disease, to kick start awareness as they have for many others.
      There are so many people who have burning mouth as a secondary symptom to some other underlying condition, whether known or unknown. This causes a wide variety of symptoms, pain site occurrence, onset and etiologies that simply baffle the medical profession. BMS is a syndrome of exclusion, which means that it is what is left when all other possibilities have been excluded. Tough to pin down and diagnose, to be sure, and there are no definitive tests, either.
      Your comment on the research in Colorado is intriguing, but the challenge that we BMS sufferers face in trying to use technology or even medicine that targets specific nerves is that our misfiring nerves are generally NOT specific. I have undergone a series of painful and unsuccessful diagnostic nerve blocks,and I know personally how challenging that is. Unlike TNS (trigeminal neuralgia), we do not get that “zing” of pain that allows them to determine the nerve that is firing. Ours is a diffuse, burning and tingling pain, that can actually manifest in a variety of areas in the oral cavity and it is impossible to determine what nerve or nerves (perhaps even the root like small fiber nerves) are damaged. This therapy may help a small subset of us with specific cranial nerve damage, but they will probably not be classic primary burning mouth syndrome sufferers.
      I wish I could be more positive, but as I pull into the station toward 7 years of burning pain, I haven’t seen any big breakthroughs for us. It is still the “throw everything at it and see if anything sticks” method and we are forced in far too many cases to educate our medical professionals.
      Keeping hope.
      Kali’

  16. Charlotte Harris

    Kali, what do you think of capsaicin as a treatment? I have read a lot about it and I am so confused.

  17. Also what dental procedure did you have done that you think may have started the BMS for you. I had a root canal done 3 months before mine started. Have you heard of anyone getting BMS after a root canal? Thank you for helping me. Charlotte

    • Charlotte,
      To answer your first question, I think many of us turn to capsaicin (or the recently popular Tabasco sauce treatment) first. It is cheap, easy to do, and seems logical. Most of us do not find lasting relief from it. I tried the cayenne pepper version and found it analogous to hitting your foot with a hammer to make your head stop hurting. 🙂 I think that it temporarily trades one irritation for another, but in the grand scope of things, it is probably worth a try. Perhaps you will be one of the lucky ones that finds more than temporary distraction.
      Regarding the dental procedures – in 2006 I had my front two upper crowns replaced with a supposedly more attractive and durable material. This involved multiple dental appointments and one morning I awoke with BMS which lasted for 4 months and disappeared as mysteriously as it had come. I did not at that time, correlate the two and mistakenly assumed that an antibiotic I had been prescribed had knocked out an infection.
      In 2008, the right side crown of those same two teeth split multiple times and there seemed to be some kind of contact issue. Finally, it abscessed and my dentist said he needed to do a root canal on it. He did, but I was still in pain. He sent me to an endodontist, who referred me to an oral surgeon because he said that the root had been fractured. This led to an apicoectomy (a dental surgery to hopefully save the tooth) and it was ultimately unsuccessful. I eventually had to have the tooth extracted by a periodontist and the plan was to have an implant, but on May 2008 the burning began again and that nerve issue took the implant off the table. I have a DaVinci permanent bridge now that replaced the old crown on the left and replaced the missing tooth on the right. The burning increased with each dental procedure and although in both cases it had begun in my upper esophagus and the back of my palate, it now involved my entire tongue, with the front half being the most problematic.
      The periodontist who did my extraction verified that the nerve capsule between my upper front teeth was intact, but even after researching it extensively with his colleagues, found no evidence of damage that would cause BMS. However, he admitted that there was much they did not know about issues with larger nerve blocks and also damage to the hair-like nerve fibers found in the mouth. I hope this was illuminating, and that you find a therapy that helps and coping strategies that allow you to live your life well with this chronic pain. Consider checking into one of the BMS Support groups on Facebook, if for no other reason than support from others with many of the same challenges. Good luck!
      Kali’

  18. charlotte harris

    Thank you for your reply. I did trying joining a group on facebook and they all say closed group. When I go to the join button nothing happens. Do you know what is going on by any chance?

    • Charlotte, do you have a Facebook account? If so, when you click the button, a request goes to the moderator of the group. If you don’t, they can not add you. Let me know.

  19. Your post is very helpful, thanks for sharing. I do feel very alone with this syndrome & I’m tired of complaining to everyone! I’d love to meet someone in person that has this so we could talk although I wouldn’t wish this upon anyone!

    • Linda,
      I am glad it helped. I have a collection of posts at http://kalipr.wordpress.com/tag/burning-mouth-syndrome/ that you might find of interest, and do check out the Facebook BMS Support Group. I think they are up over 700 members now from around the world, so be patient with the translation issues, but if something works for one of us, we tell everyone. They also have a file with the location of all of the members who wanted to disclose that, and there may be a fellow suffer near you. I hope so!
      Kali’

    • Linda, what city and state are you in?

  20. I belong to two BMS groups on Facebook. Ask to join, it’s amazing to Hear how other people deal with this on a daily basis

  21. Shirley Forehand

    Kalipr
    Two months ago started with dry lips and mouth, escalated to BMS. Dead end visits to dentist, dermotologist and now doctor. My biggest issue is trying to sleep. I started on 1m of Xanax four days ago. Not really helping. How do you sleep? I pray for all of us.

    • Shirley,
      So sorry to hear you have had to deal with BMS. It is hard to find the right balance of meds, but my best advice has come from a neurologist. You might want to check one out. Pre-screen them by phone to see if they are familiar with BMS. You don’t want to spend multiple appointments educating THEM on your disorder!
      Re: Sleep – I take Klonipin for the burn and its side effect is drowsiness. If I take my dose at lunch time, it helps take the edge off the burn through the afternoon and evening and helps me drop off to sleep just fine. Sleep is our friend, since the misfiring nerves seem to calm down and lack of sleep seems to be a common denominator for us in increased burning and pain. Wishing you luck and remission!
      Kali’

  22. Hi! Just found your page. I am going on my 4th year I believe — I’m starting to lose track 🙂 Every few months I check online to see if there has been some new development. I am not on Facebook and don’t wish to be, however, I’m wondering with all your research, if you have found people who have had this problem for years and then it went away? Everyone I’ve seen has just had it and it hasn’t gone away yet. Of course, people don’t normally post when they are healthy and happy.

    Thanks!

    • Hi Kelli,
      Yes, I have heard from people who have gone into remission and I actually had a 2 yr. remission between my first bout of BMS and my second. Unfortunately, no one has been able to attribute their remissions to a common cause. Many, like mine, simply disappeared one day and others experienced a gradual cessation of symptoms. No rhyme or reason! The media says that the “average” is 7 years but there are people in the group who have suffered three times that period, so we all pray to be average! Wishing you well,

  23. Thanks for responding so quickly! Yes, I’ve heard the 7 years also. I about died when I heard that the first time (so long!), but now I’m hoping that is actually the case and that it at least goes away. But nevertheless, we all have our problems and I’ve learned to live with it for four years, and I can live with it as long as it lasts. My mother always taught me if we all throw our problems into a circle, and then pick a problem out, we would pick out our own — because we know how to deal with it! I wish you the best of luck!

  24. Hello Everyone, Like many of you I have suffered with BMS for a long time (2.5 years). Recent good results with Acyclovir after being diagnosed with oral HSV1. I didn’t have mouth ulcers which is the usual oral HSV1 symptom, but found this article http://www.cbsnews.com/news/womans-burning-mouth-syndrome-had-strange-cause/ and convinced MD to try antiviral medication. Best I’ve felt in years!

    • BMS Sufferer,
      I think that the HSV1 test is a good idea for any BMS sufferer, but the percentage of BMS patients that test positive so far has been very small. It’s a good “horse” to rule out before searching for “zebras,” however. I did not test positive for HSV1, but my doctor was intrigued and allowed me to try a treatment of Valcyclovir which had no effect on my burning.
      However, I did find a great deal of relief from something my new neurologist (3rd one, BTW!) recommended. He put me on the ODT version of Klonopin, at .50mg in the morning after breakfast and .50 -1.0 mg after lunch depending on my level of discomfort. Something about the orally dissolving wafer really makes a difference for me and I am getting about 95% of my pain relieved. I would give it a 100, but I still get a tingly tongue from time to time. 🙂 If you have not tried these, do ask your neurologist about them and see if it might be a fit for you. I wrote about this recently in https://kalipr.wordpress.com/2015/08/24/a-pattern-of-pain-burning-mouth-syndrome/
      Good luck out there! Kali’

    • I was very glad to read your post. My veterinarian friend found the HSV article and listed the doc doing a clinic in Colorado. Can you tell me how much Acyclovir was prescribed to you? I have herpes, have the meds and would like to try the protocol. Thanks so much!

      • Caroln Bills,
        I am not sure if you meant to reply to me, or to the person who said they found relief with HSV meds. I do not know what dosage they had her/him try, but my doctor put me on Valcyclovir 500 mg. 2x daily. After a couple of months, I had experienced no relief and we discontinued it. Try replying to the other commenter and see if they respond. Good luck! Also, check out http://www.bms-support.org where the latest studies, podcasts and articles from researchers around the world are available.

  25. Have you heard of anyone being successful with acupuncture? Did you try it? I have read studies but wasn’t sure if there were actual success stories… I am trying to help my grandma who is suffering from this..

    • Hi Paige,
      Yes, I have tried the acupuncture BMS protocol (originated in Italy, of all places) for a couple of years with no real change in my pain. It is not the most comfortable of acupuncture therapies, so give it a try, but depending on her pain tolerance, she may not want to continue with it unless she is getting relief from the burning. It sounds like you have done your homework, so I assume you have run across the protocol. If not, you can join the BMS Support Group on Facebook and I posted a PDF of it there that anyone can download. I wish her best of luck, but as I said above, Klonopin ODT is the only thing that has truly relieved my pain without unendurable side effects. I am sure it isn’t for everyone, but it might be worth asking your doctor about it. Wishing her well, and let me know if I can answer any other questions for you!
      Kali’

  26. Maureen Harding

    Anyone still following these posts. Recently diagnosed and looking for help.
    Maureen

  27. Reading your story,is my story.24 yrs of suffering s more than one person can handle.Into have a long and lengthy story to tell.Damag3d nerve from a dental school,has caused my life to change so drasticly,I’m ready to pack it in.Ive done everytthin.and have been to every hospital in the Boston area.Ive seen the best specialist.My story is a pathetic one.Pain from a young teen.with abscesses and tooth loss,Finally in my040s I get hit with damaged lounge.My life has had very few yrs.of a life that has been pain free.Growing up in a family of 7,the dentist was only for extraction,My depression has been since my lounge was damaged.My days and nights are in bed and on 5he couch.Inhave no quality of life.I do have more to share.But as you said ,no one really wants to listen to you.Inhave shed a million tears.Im still shedding them.please feel free to ask me any questions,I can tell you,I have been everywhere and done everything possible.A million medications.Contact me at harleyboy816@comcast.net. Patty…

  28. Thank you for replying. I to have a story to tell.Reading yours ,feels like me explaining mine.I to am a 24 yr.Sufferer.Dental school in Boston area damaged my nerve permanently. I’ve been everywhere. My heart goes out to all who suffer.I’ve been to the best in Boston.Tufts cranial facial pain clinic.Brigham & Womens,Beth Isreal and Mass General.I’ve taken dozens of medication.Accupuncture, and healing priests.I’m now 66yrs old.My body is tired.It’s hard for me to endure this dibilitating condition
    There is no cure.I have a story to tell ad well.From neglect as a child with my teeth.and now as an adult ,more suffering
    It seems suffering is all I know.I tried to get on Dr.Oz show.A friend affiliated with producers,filmed me to talk about giving this condition more exposure.They never responded.I would love to hear some feedback.

  29. Patty,
    I am a little confused by your last comment. I was not alerted to the May 23rd post, so did not respond until I received word of both the May 23rd and May 27th comment today. Did someone else respond to you directly? If they have answered your questions, just disregard this reply, but if not, let me know if you have a specific question you think I can help you with.
    Reading what you have written, I hear the familiar lament of those who suffer with chronic, intractable pain, and since there are only coping strategies for us, whether they are physical, mental, or chemical, there isn’t a lot new to say.
    However, support and communication with other people who “get it,” and are willing to listen and share strategies can be helpful. I hope you have checked into the Burning Mouth Syndrome (BMS) Facebook group and have shared your story there. There may be friends to be made and a sympathetic ear for you, and those are always good things.
    Keeping you in prayer for relief,
    Kali’ Rourke

    • Patty,

      This is a dreadful condition to deal with. I’m almost at 5 years, tried many medications, supplements, gum, mints, etc., etc. and still deal with this on a daily basis! I’ve come to the conclusion that there is no cure all, no magic pill and I have to find a way to deal with the pain! Stress definitely makes the pain more intense, but Stress makes anything seem worse! I’m managing, trying to get by but there are days I’m very sad to be dealing with BMS! 24 years, I can’t imagine. I keep hoping the 7 year mark (as posted on some sites) will just make the pain go away!

      I do wish Dr. Oz would consider a show to help spread awareness!

      Lynn

  30. Brilliant article , sums it up unfortunately. A day at a time and maybe someday , someone, somewhere will find a cure.

    • Thanks, Jo.
      We are definitely all praying for that. Meanwhile, visit https://www.bms-support.org/ and bookmark that site if you are dealing with Burning Mouth Syndrome. It has folks all over the world keeping an eye out for advances in this area of study, coping strategies that have worked, and good advice for anyone who is suffering from BMS or caring for someone who is. Good luck to you!
      Kali’ Rourke

      • I am so happy to receive this information regarding b.m.s.
        I am a 20 plus year sufferer.
        I’m tired and worn down from this condition.
        I could be your poster child with all the Boston hospitals I’ve been to,and procedures I’ve had.
        I’m retired and have no Golden years.I live hell on earth.I have done acupuncture, shots in my head.Tried all kinds of mouth washes.I got a license for medical marijuana,and it worsened my nerves.
        I tried holistic herbs,and vitamins.
        I saw an infectious disease Dr, had my tounge swabed for herpes virus, nothing was wrong with it.
        I do see a therapist, but in the end,this burning pain,it so hard to cope with.
        Sometimes,I think about giving up my life,but I have to much to live for.
        It sucks the life out of you.
        I’m on so much medication, and still suffer.
        I think about having the nerve killed.
        Some Dr’s say,even that will wear thin..
        I had a friend, who could put me in touch with the Dr Oz.show.She filmed me,and we sent it in,hoping we could get some exposure, but nothing became of it.
        We need more exposure, and we need it on t.v.
        People need to know,we are here and we are suffering.
        Please keep in contact with me..Thank you
        Patricia Cataldo

      • Please keep in contact with me.
        I’ve had this condition for 20 plus years.It is so hard to go on,day by day,with this debilitating condition I have been to so many Boston hospitals, had accunpuncture, I’ve had nerve blocks in my head.I’ve even threw holy water from Lourdes,friends brought me .I’ve seen healing priests.
        Nothing will take away this hell I live with everydayod my life..God bless you

  31. Patricia,
    I am so sorry you have had such a rough journey. If you are suffering from Burning Mouth Syndrome, unfortunately, there is not a specific nerve you could block. Trigeminal Neuralgia sufferers have more success with that since the nerve that is firing can be identified. Our more diffuse burning is a much more difficult target.
    It sounds like you are doing everything you can to cope, and I am glad you have talked with a therapist, as well. My neurologist refers to the “persistence” of BMS and I know you know exactly what he is talking about. Do check out the BMS Support website (https://www.bms-support.org), and I am happy to correspond with you if you would like to share an email address.
    Kali’ Rourke
    https://burningmouthjourney.wordpress.com

  32. The article reads like I wrote it myself..
    How difficult it us to go on day by day.
    I to call it my partner,a hellish partner.
    I to take clonazepam, one during the day,and two at night.
    That to troubles me,I know the side affects are not good,as I have been on it for many years.
    I had nerve blocks,and have been to so many Boston hospitals.
    I to believe ,in my case it came from dental work
    Many years I was having dental work at a learning school in Boston,a very prominent one.The student injected me and when he did,I jumped,with what seemed to have hit a nerve that shot right to tip of my tounge.
    Shortly after that,I was awakened at night,with a bolt of lightening, that shot to the tip of my tounge. It was so strong that it left my tounge pulsating. .Then the burn started.
    I could no longer work.I have been suffer with depression,anxiety. I have had thought of killing myself,but I would never end my life.
    I have family and an understanding husband to live for.My catholic religion also plays a part in it as well.
    I pray for all those who suffer ,hell on earth..
    Please feel free to contact me,as I am a 20 plus year sufferer. .
    God bless. .

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