Burning Mouth…Impossible Choices

NOTE: Although this post will remain on Kali’s OQM Musings, it has been reproduced and future BMS posts will appear on A Burning Journey. Please check it out if you are interested in more about Burning Mouth Syndrome.

I know many of you have checked in on my Burning Mouth Syndrome (BMS) journey over the years. May 2016 will officially be 8 yrs. – No celebrations are planned.

You have seen me try all of the medicines and supplements and coping techniques that have come my way or been recommended by any of my Neurologists (three, so far). If you are new to BMS or this blog, my posts on it can be found at Burning Mouth Syndrome.

Cedar Pollinating

Juniper/Cedar in pollination

Back in August 2015, I reported to you that the orally dissolving tablet form of Klonopin/Clonazepam seemed to really be making a difference for me. And it did…until it didn’t quite so much. To be fair, I recently started using a seasonal allergy spray called Dymista, and it tastes horrible. The bitter taste seemed to worsen my BMS symptoms immediately, and I didn’t think I could tolerate it. I learned how to apply it correctly and that made it better, but since I have been using it, over all my burn has been much worse. Dymista works very well for my allergies by combining cortisone with a topical antihistamine, and I am breathing easily and clearly through the worst of a very heavy juniper/cedar pollination season in Central Texas but increased burning seems to be the price I must pay for that.

What a decision – to burn or not to be able to breathe?

That really is the question before me now.

I haven’t gone to see the Neurologist about this because I am fairly sure he will say something on the order of, “Duh! If something is working for you, don’t mess it up. Stop the Dymista!” And deep down I must not want to hear that because I am avoiding calling him.

Magnified Cedar Pollen

Magnified Juniper/Cedar pollen – looks like the Death Star, doesn’t it?

Likewise, on the allergy side, I am sure my Doctor would like to see me stay out of the infections and bronchitis that I used to get on a regular basis before I discovered cortisone nasal sprays. (No correlation between regular sprays like Flonase and Nasacort, and my burning mouth syndrome symptoms, by the way – we checked, and the only spray that has caused me any distress is Dymista, which also the one that works the best. Naturally.) She would likely recommend staying on the therapy, at least through the heavy pollen season.

I know many of you have struggled with similar knotty decisions, weighing one pain or side effect against another, and being forced to choose whichever is most bearable. It is like a Jenga game that is stacked against us and since there is not a treatment that cures or even completely relieves Burning Mouth, we can’t just switch to another game.

I will continue wrestle with this one but wanted you to know you are not alone out there and the most important thing is not to let discouragement or depression overwhelm you. 

My husband read a blog recently that compared depression to driving a car when you are very tired. You think you can power through, tough it out, and get to your destination, but at some point, exhaustion can overtake you and all of those worthy goals come crashing down. Depression can be like that…a fatigue you keep working through, until one day you simply can’t anymore.

That is when you reach out for help, my friends.  

Believe me, I am monitoring myself very carefully to make sure I don’t suppress my feelings and wind up in an emotional crash on the side of the road. And now that my husband understands this dynamic, too, he will help me.

As for my impossible choice; I am not sure yet. I think I will probably use the maximum dose of 2 mg of Klonopin ODT while I have to use the Dymista (cedar lasts through February in Central Texas) and I will let you know how it goes. In between naps, of course.

Good luck out there!

POST UPDATE February 14, 2016:
Well, I changed my mind after several days of “off the chart” burning and discontinued the Dymista.

What happened?

The burning went down to its current, controllable level and despite going back to my regular cortisone nasal spray, I am currently congested, coughing up a storm and fairly miserable. Is it a cold? Is it allergies? Is it a cold that piled on to the extra congestion of allergies? I haven’t a clue, but can only wait it out and pray for rain.  Cedar has been joined by oak and elm pollen in the local counts now, so it is practically a pollen party! A great, romantic way to spend Valentine’s Day, don’t you think?

Bottom line, I eventually chose to diminish the burning rather than breathing clearly, so I guess that shows you where I rate BMS on the scale of pain.

 

4 thoughts on “Burning Mouth…Impossible Choices

  1. I too suffer from this horrible affliction along with burning eyes. I relocated from Tucson to Ct and I was so stressed the year after I got here the burning mouth started. The dental hygienist told me it’s her worst fear of menopause. I have had it 2 years now along with my hair falling out . I’m not sure which is worse but all of it is too much to bear sometimes. I’m moving to Austin next year so I’m hoping getting out of this environment might help .
    I’m going to a Rheumatologist next week but with everything I read , I don’t think it’s even worth the time .

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    • Leslie, Austin is where I live, so when you get here, leave a message on my blog or email me at kali@austin.rr.com and I will give you referral to a good neurologist. If it is BMS (frankly, the burning eyes and hair loss are not symptoms that are consistent with primary BMS), he will be able to help you with the symptoms, but this sounds like you have an underlying condition. In any case, if I can be of any help, I will be happy to. Good luck, and I hope the rheumatologist helps. Do get tested for Sjogrens and vitamin deficiencies!
      Kali’

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  2. Passed your post onto our friends in the group. Wanted you to know what some think.

    Zdravka Rostočil Thank you Kali…good luck and thank you…hugsxxx we miss you.

    Kristine Peterson: Thanks Dennis , please keep us updated on Kali’s blogs. I know I really appreciate it. Charlee Chan: Thanks for sharing Kali’s blog, Dennis. I wondered how she was. Zdravka Rostočil: Well Dennis thank you for sharing..she was such a nice lady..at first I was thinking she posted…frown emoticon. Dennis Sharpe: Anyone wanting to follow her blogs, can go to this site and sign up and she will send to your e-mail. https://kalipr.wordpress.com/2015/12/31/forgive-and-forget/
    Dennis

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    • Thanks so much, Dennis! I got a comment from a sufferer who is moving to my area next year, and hope I can be a resource to her as she threads her way through this mystifying syndrome. Love to all of the regulars on Facebook, and I hope new folks are finding you and getting information and support. Ya’ll take care!

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