My BMS is lowest in morning, escalates throughout the day and then by night or bedtime the pain is at its worst. Consequently, I rarely fall asleep before 3:00 am due to the intensified pain. I keep ice water on my night stand but drinking/sipping water keeps you up all night. Can anyone offer tips or experience on how to sleep when pain is worst at night? Doctors in my state refuse to write for any sleep med (zolpidem or similar) and my insurance would require the doctor to first spend months getting it authorized. I've tried already. Insurance does not want anything controlled to be prescribed and doctors are reluctant for BMS. I guess if you had open heart or brain surgery they might give you something for sleep, if insurance allowed it. Benadryl leaves me lethargic next day. I sleep about 4 hours at most a night for last 7 years now since BMS began. Before BMS I had no problems falling asleep and remaining asleep until morning and did not need any medication or supplement. Thank you for any suggestions that have helped you with sleep. Best to everyone.
Burning Mouth Syndrome - any sleep suggestions?
Question posted by K2Z on 18 July 2021
Last updated on 21 July 2021
5 Answers
I've had BMS for the last 15 years. For sleeping I take 2 , 100MG at bedtime of trazodone. This is the only time I get sleep and relief. I fall asleep the minute my head hits the pillow and sleep like a baby all night. For pain during the day I take 3-200MG of over the counter Ibuprohen. It helps. Hopefully someday they will do more research. Maybe then they could at least find a treatment for it. Sorry for all of you that suffer from this horrible painful disease.
This comment is intended for everyone kind enough who replied to my question about what to take for BMS pain keeping me from sleep. I appreciate each and every response, thank you so very much. Last night at 3:00 AM, I finally accepted that I was not going to fall asleep, duh. I kept hoping to doze off but no luck. I dragged myself out of bed and found some otc Unisom, which is an antihistamine (similar to Benadryl). It is "Doxylamine succinate" 25 mg. I cut it in half and only took half. It did get me to sleep again, thank you. Based on past experience, I think the 25 mg. would have left me in a stupor today, LOL. Maybe another time.
I am familiar with trazodone but have not tried any in last 15 years. That said, I will give it another try for 'sleep'. As for Lyrica: It is the SAME medication as Gabapentin/Neurontin made by Pfizer. It is an anti-seizure medication that calms excess nerve firing. The difference between Lyrica & Gabapentin is that Lyrica is much more potent, hence the lower dosing amount. I tried Lyrica, and within 2 weeks I had unpleasant weight gain and oddly, it gave me terrible "INSOMNIA". I quit taking it due to insomnia. Doctor argued with me it could not possibly cause insomnia but I showed him FDA reports on middle age women documenting it can and will cause Insomnia for some patients - and I was one of them! Gotta love how doctors think they know your own body better than you do. Hope everyone is having a good day with plenty of gum and ice water on hand. Be well and blessings to each of you. K2Z
I have tried magic mouthwash, also Dexamethasone, Nystatin, and a formulary from an RX. However, I haven’t heard of lyrica. I am really looking for the root cause to eliminate it but after blood tests and medical visits there is nothing that stands out. So I guess I have primary BMS.
I get your frustration and the desire to find out the root cause of BMS. It’s crazy, there’s got to be a reason. How can a person begin to find a treatment if they don’t know the cause? Sometimes it gets quite overwhelming keeping track of all the things I’ve tried to do to find answers.
I think it’s neurological. I have an autoimmune disease called Sjögren’s disease and there is a neurological component to this disease. Half my face is numb on my left side which could be related to a cranial nerve issue and I have a condition with my left eye diagnosed as neurotrophic keratitis (or numb cornea) which is more than likely related to the same cranial nerve that my left sided facial numbness and maybe my BMS is related to. I also have horrific, intermittent sore throat pain which may be related to a different cranial nerve. I think the best way to detect cranial nerve involvement or entrapment is through MRI but not sure.
My local neurologist has been helpful. He’s tried me on a number of medications that are supposed to help with nerve pain but I couldn't handle them because of the side effects, most of the drugs I tried were anti seizure medications. Lyrica with the generic name of pregabalin is my last hope in that class of medications. I’ve been on it since Feb. 26th of this year and ramping up very slowly, 50 mg every two weeks I. At about the halfway mark of the dosage amount I want to max out at. Going slowly lets me get used to the side effects, some of which include dizziness and fatigue. I had a consult with a Mayo Clinic neurologist but wasn’t satisfied with that visit so will be seeing a neurologist at the University of Minnesota in October. Still have a couple of things I want to do to figure out a cause for my BMS, one is get allergy tested. I want to get tested for food allergies as well as environmental allergies. I can’t handle exposure to cleaning products — they really make my burning mouth and throat issues worse. I also want to get a test done called a 24 hour esophageal mannometry done. See link. I’ll keep you posted. Good luck.
I use a mouth wash containing 2% viscous lidocaine (need a prescription and my script is for 10 bottles at a time, cheaper that way) I mix equal amounts of over the counter Mylanta with the lidocaine. This mouthwash numbs my mouth. I don’t swallow the mouthwash I hold it in my mouth until my mouth is numb then spit it out. Google “magic mouthwash” there are lots of formulas. Some of which include Benadryl and even some steroids. I also am trying Lyrica or pregabalin, suggested not only by my local neurologist but by a Mayo Clinic neurologist consult. The Lyrica makes me very sleepy at night. Good luck.
I've tried Lidocaine rinse for the bms. I just didn't like how it maked the inside of my mouth 'feel' or taste. Have also tried Mylanta and Milk of Magnesium to swish with but didn't help much. Lyrica is a good medication. When I took it, I did get some decent pain relief. The problem however was twofold: rapid weight gain plus total insomnia. So I discontinued taking it. But while I was taking it, it did help with the BMS pain!! It also helped my neck pain. As long as you can sleep with it, I say go for it! Just make sure your doctor keeps checking your CBC yearly because it can also reduce your White Blood count below normal levels - which make you vulnerable to infections. Any anti-seizure med can lower white count but again, not with every person.
K2Z - thanks for the comment. Hopeful news from you regarding your experience with Lyrica helping your BMS pain. I’m up to 300 mg day of the Lyrica and I have noticed a weight gain, but it’s just 10 pounds approx since February but what I’m discovering now is I’m retaining water and looked up Lyrica side effects and fluid retention is mentioned. After your comments about WBC I guess I need to look into Lyrica side effects more carefully, it certainly helps with sleep, anxiety and depression. Down side, fatigue and a little dizziness and horrific sugar cravings. Going to stick with it for awhile. Thanks for the info. Can you tell me though how much Lyrica were you taking when you got some relief of burning mouth?
I accidentally discovered that trazodone, which I was given years ago for mild depression, really helped with sleep. It is generic for Desyrel. I take 1/2 a pill each night i.e. 25 mg, and sleep really well. It is well known as a sleep aid and non addictive I am told. Hope this helps.
I take 2 Benadryl about 45 min. before I go to bed. It knocks me out. I try not to do this every night. I just want to get to sleep as fast as I can. I, too, feel lethargic the next day but I can always switch to Ativan to knock me out. We're all in this together. I could use all the help I can get.
Just a thought, Benadryl can cause mouth dryness which could make your burning mouth issues worse maybe? I know I absolutely can’t take Benadryl but I have mouth dryness due to my Sjögren’s disease. Have you been tested for Sjögren’s?
I was tested in-depth for Sjogren's Syndrome at Johns Hopkins in March 2021. I don't have it. I constantly chew carefree sugarless bubblegum from around 3 PM until I go to bed. My mouth isn't dry, just burning tongue. I rinse my mouth with Biotene a few times a day, it's soothing.
Have you been seen by a neurologist? Maybe you have some cranial nerve damage, specifically the trigeminal nerve.
I did see a neurologist but they didn't know what to do or what to look for. Thank you, again, for your advice. I will see another neurologist soon.
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sta-d, pain, sleep, burning mouth syndrome, burning, mouth, syndrome, burning mouth
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