I have been battling oak pollen allergies since the beginning of April. We got a good rain for a day, and a small respite, but the levels are back up in the medium category today and I feel it.
Burning Mouth Syndrome is a foe I have been battling for ten years now (Mother’s Day will mark the 10th anniversary…Yay?) and I have noticed a pattern that arises when I am forced to take decongestants along with my antihistamine because nasal congestion is rocking my world. There is no doubt in my mind that the drying action of the decongestants, although needed and effective for the life-sustaining action of breathing, also irritates the burning neuralgia of BMS. In spite of adding quarts of water to my intake, the pain has been nearly unbearable some days. When added to a string of migraines, triggered by sinus pressure, it has been a tough time.
I found myself looking forward to that next dose of Klonopin/Clonazepam so I could doze, even if I didn’t really have time to do that. To sit in my chair, watching TV with my husband, and just drifting off to sleep where the pain was not present was a gift on those high burning days. But what do you do when you have things to do, people to see, and responsibilities that are not subject to rescheduling? What do you do when there is a once in a lifetime event going on, and you can’t afford to miss it?
You power through.
I grab that glass of iced water and keep drinking. I use the distraction of the event to get my mind off what I am feeling and take any opportunity I can to nap, or simply sit quietly. I keep my meds going and I don’t miss a dose, but I am also managing the timing of it so that I can stay alert for the important things. (Coffee or green or black tea does the trick for me, but we all have our strategies!)
Burning neuralgia is a tricky beast. I have referred to it as a dragon at times, and that description still seems apt. You may have weeks of good days, where the burn is barely noticeable and doesn’t intrude terribly on your life, only to have a string of days that make you wonder if it is worth going through this day after day. Sometimes I am able to discern the cause or trigger (dryer than normal air, dryness from meds, and stress are three of mine) but sometimes I can’t, and I think that is more difficult to deal with.
Sharing your feelings, your coping strategies, and the information you learn along the way in this burning journey seems to help, and I encourage you to connect with fellow sufferers and check into the Burning Mouth Support website. If new information comes out, it will be there! Check in on Facebook for a group that might be of help, but be aware that many folks may be in what I call the “thrashing stage,” where a lot of incorrect information and quack remedies can be tried and mistakenly recommended. Use your discernment and be patient with them as they find what actually works and start to develop constructive coping strategies.
We only have each other and our medical specialists to turn to, and as many of you have discovered, we are often teaching our doctors about a pain syndrome they have not encountered before. Keep communicating and my prayers for relief and cure are with all of you.
There, I feel better already!
I’ve had bms or trigeminal neuropathy as my neurologist calls it for approximately 20 yrs. My meds have varied over the years. I have my neurologist and pain management doctor treating this beast. It’s been a long road. I was having twice weekly physical therapy sessions. The exact spots were being targeted. So, I feel pretty confident in the diagnosis. However, I’m rarely pain free. As the opioid paranoid crazy government gets, its harder to get complete relief. My neurologist is great. He knows I’m not a drug seeker and is trying so hard to help. I hope someday to never feel this burning again. Good luck to everyone
I am glad you have gotten a diagnosis you agree with and that you have found treatment for your trigeminal neuralgia. It is a difficult condition and has received much attention over the years, however it is not the same as burning mouth syndrome. The difference between trigeminal neuralgia and burning mouth syndrome is that the trigeminal nerve often sends a zinging pain as it fires and so diagnostic blocks can be done on the particular nerve. In burning mouth syndrome, there is no zing and no target, only an escalating burning pain that can affect the entire oral cavity. Opioids are not particularly effective for BMS although I know many people have tried them. You can have both conditions simultaneously but the treatment you have on the trigeminal nerve will not ease the BMS burning. It might be worth talking with your neurologist about a different medicine for the burning pain and see what he recommends. Sometimes we are in the position of having to educate our health professionals and this may be your opportunity to share information that could possibly help others, too!
Good luck to you, and feel free to check out the BMS Support website for information and research.
I have had BMS for at least 8 years, and have tried any new suggestions from my specialist over that length of time. The latest was a product called Watermelon Frost, purchased from a Chinese Medicine store. It comes in a spray or a chewable tablet. I tried both and much prefer the tablet which I let dissolve in my mouth. It helps but is quite temporary. I have been researching the benefits or oral THC or CBD. I will try that next as it is legal and easily available in stores where I live. I do take THC capsules for sleep, however don’t see any effect on BMS.
I am sorry to hear that you are dealing with BMS. Do you know exactly what is in Watermelon Frost? I think that many of us have tried topical relief, but as you mentioned, it is quite temporary.
Let us know if you find a level or type of THC or CBD that gives you any relief. So far, no one has made that claim, but the day is young.
Thanks for stopping by the blog and thank you for your comment!
I will most definitely report any success I have. The ingredients of the Watermelon Frost are:
Synthetic Borneol, Bohesuyou, Sodium Sulfate Decahydrate, and Menthol.