Sleep Apnea and Burning Mouth Syndrome

Life has decided I needed an additional challenge and so sleep apnea is joining Burning Mouth Syndrome now that I have conquered my chronic migraines with Aimovig injections once a month.

Sleep apnea affects so many people (An estimated 22 million in the U.S.) with 80% of those undiagnosed and therefore, untreated. Sleep apnea affects many systems in the human body, as laid out in a 2017 article from Science Daily, researched by John Hopkins Medicine. The harmful byproducts of this stress on our bodies are documented, but I found myself wondering if there might be any link with chronic neuropathic pain conditions like Burning Mouth. I can keep wondering since there are few studies and as usual with BMS, they are quite small.

However, here is what I found:

As you can see, nothing more recent popped up. If you see something, please call it to my attention! We know that stress and the hormones it produces are not good news for our symptoms, so it is worth taking a look at something that reduces stress and your chances of developing more dangerous disorders.

As a long time BMS sufferer, I know that dry air is not my friend when it comes to my burning mouth. As I researched CPAP machines and the myriad of options that come with them, I realized that the basic model sends a steady stream of dry air into your nose (if you use nasal mask or pillows) or into your nose and mouth (if you use a full mask). This sounded like a horrible option for a BMS sufferer, so I kept digging and found that you can add a few options that sounded rather helpful. Higher priced models include heated humidifiers and adjustable rates of airflow. Hmm, warm humid air that adjusts as I need it? Sounds great.

What does it cost? With my plan, the model and mask I chose cost close to $400 out of pocket with a $50 per month rental fee that lasts for 9 months. At the end of 9 months, I will own the unit. Until that time, with this particular supply provider, I can change models or masks if the one I have is not working well for me.

I don’t have a great handle on supply costs but have budgeted about $150 every six months which should more than cover new minor parts with leftover cash to replace major parts when they are due. We are still in the deductible part of our insurance so your coverage may lessen these costs quite a bit.

If you want more, of course, you pay more. Sleep Apnea treatment will usually be covered, but I doubt BMS even gets considered so be frank with your sleep specialist and discuss what dry air could do to flare yours.

I tried mine for the first time last night and it wasn’t unbearable. I am one of those people who simply don’t sleep well the first night with something new (even hotel beds) so I will see how it goes. I got six hours of solid use in and that is good if I am reading the literature correctly. Finally at 4:00 am I had enough and turned it off, but I had been wearing it since 10 pm, so I got a good sample. Here are things I noticed as they apply to Burning Mouth Syndrome.

  1. The humidifier definitely helped. I had tried the CPAP at the supply store without humidification and even that short time flared my burning. The humidification helped that to the point that I did not flare even after long use.
  2. The mask I chose was the nose pillows style and it has minimal headgear and only closes off the nostrils. This works for me because I am a nose-breather and not a mouth-breather. If you are a mouth-breather, you will want to opt for a small profile mask that will cover both nose and mouth. Let me know if you find that air coming through your mouth causes you BMS discomfort. My mouth was a bit dryer than usual last night, but it did not react with pain.
  3. In the morning, my mouth was still a little dryer than usual, but I drank a glass of water before breakfast and noticed nothing after that. I am not more alert than usual, but my research indicates that you usually see benefits in 2-4 weeks so that is not surprising.

There it is, my friends. Sleep Apnea and BMS from my perspective and I will add updates to this post as I learn more about how they might intersect. If CPAP helps BMS symptoms for me, you will be the first to know and it may be helpful for you to get tested to see if sleep apnea has snuck up on you. My only clue was a higher than normal hematocrit level on a yearly blood test until my husband recorded me sleeping and that indicated I might not be breathing from time to time. Shocker.

Comment and let me know if you have tried CPAP and how it affected your BMS. The more we know…

 

7 thoughts on “Sleep Apnea and Burning Mouth Syndrome

  1. Hi there. Have you also noticed a swollen tongue? My BMS started 9 months ago after a long battle with a dental crown that didn’t fit properly.

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    • Eileen,
      I never had a swollen tongue that I was aware of. I hope yours resolves and goes into remission as your mouth adjusts to a better fitting crown. Have you been diagnosed with BMS? Do you take anything for it?
      Kali

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  2. Pingback: Sleep Apnea and BMS Update | A Burning Journey

  3. I have been a nasal pillow, Cpap user, for over ten years. I was diagnosed with Burning mouth in November. I tried using my machine several times after diagnosis. But I would be jolted awake after only 20 minutes or so with a dry mouth where my tongue was glued to the top of my mouth and I was in pain.
    Haven’t used my cpap since.
    Going in to get fitted for a full mask tomorrow but I don’t hold out much hope.
    I miss my cpap. This Burning mouth is awful!
    Even with the humidifier on full blast, I can get no sleep.

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    • Susan,
      I am so sorry you have joined our ranks. Are you using a CPAP with a humidifier in it? I found that was more tolerable, but you have read my story and know that I finally gave up on it due to other reasons. I hope the full mask improves your experience. You may be a person who breathes through your mouth as well as your nose when you are sleeping, and if so, the full mask may make a big difference.
      Regarding your BMS, are you treating it in any way or using coping strategies? Check out the BMS Support Website if not, because it may answer some questions and give you ideas for coping with this chronic pain. Stay in touch and let us know if the full mask helps you!
      Kalí

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      • Thanks for the reply and for the info about a support group. I had no idea. Could use some help and support. No one understands how awful it is how painful. I was diagnosed in November. In December and January I had taste alterations and could barely eat or drink anything at all. This lasted 5 weeks and I lost 25 lbs. Everything tasted like liquid soap or charcoal. I threw up anything I tried to eat or drink. Water was the worst.
        That has pretty much ended but the sores, cut up tongue and swollen inside of my mouth just never quit hurting. Been to many Doctors and no one knows what to tell me. All the products out there work for 15 minutes so I’d rather not go to the expense.
        I rinse twice a day with warm salt water which is the only thing that gives me relief.
        Any advice would be appreciated.
        It’s been a trip.
        Oh, stress started mine up . Also had some extensive dental work done at that time.
        Fun stuff!
        Thank you again!
        Susan

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      • Susan,
        Again, I am so sorry you are experiencing such pain. The sores and swollen tongue are very unusual in BMS. The hallmark of BMS is the very lack of those symptoms in spite of escalating burning beginning on waking and going up intensity until sleep. There are medications that have helped many and Clonazepam orally dissolving tablets have been a game changer for me. You will see many coping strategies on the website and medical information that may help you and there are also Facebook groups (listed on the website and from all over the world) that may be of help and support, as well.
        Good luck!
        Kalí

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