Sleep Apnea and Burning Mouth Syndrome Update

Photo by missyredboots

About two years ago, I wrote a post about Sleep Apnea and Burning Mouth Syndrome.

Since then, a couple of dramatic things happened. A third occurred more slowly and was less dramatic, but more long-lasting.

First: I received this notice and an accompanying notification from my sleep apnea specialist that encouraged me to enroll myself in the recall website and to add an additional filter mechanism (that I could buy on Amazon) to protect me from the particles the machine could be spewing into my lungs.

From Phillips: “In June 2021, after discovering a potential health risk related to a part in certain CPAP, BiPAP and Mechanical Ventilator devices, Philips issued a voluntary Field Safety Notice (outside U.S.) / voluntary recall notification (U.S. only).
Patient safety is our top priority, and we are committed to supporting our patients, durable medical equipment providers (DMEs), distributors, home health partners, and clinicians through the complete remediation process.
Throughout the remediation of this recall we will provide guidance and share next steps so you can ensure you have the most current and accurate information. We thank you for your patience as we work to restore your trust.”

(I registered my machine on the recall website, tried to use my travel version that hadn’t been used since I bought it, due to COVID travel restrictions. It failed to be tolerable due to insufficient humidity. I then tried an add-on filter to my present DreamStation that made it feel like I was breathing through a barrier, It is now March of 2022 and I still do not have a replacement machine.)

Second:

I got serious about weight loss, mostly to take pressure off my problematic knee, but I also knew that losing weight might help with the apnea. I lost 28 pounds and am maintaining that loss. I think it has helped the sleep apnea, but I would have to go through a sleep study again to be sure. I don’t feel motivated to do that.

Third:

And this brings me to the psychological element of CPAP. I am not comfortable with the machine any longer. It was always a challenge that I just pushed through, and the motivation to do so has been eclipsed by discomfort. There is an element of trust to allowing a machine to pump air into your lungs all night long that I have personally lost.

Big Question: How has this affected my Burning Mouth Syndrome symptoms?

Not at all that I can tell. My escalation pattern is the same, the level of burning remains the same, and I am sleeping well and doing my best to get 7.5- 8 hours per night. Other things may wake me in the night but snoring has not and there are no complaints from my husband. 😀

I think if you have sleep apnea and require CPAP you should certainly try your best, but I would not invest in another Phillips machine. This recall has dragged on for far too long and has lost me. Now that I have gone so long with no machine, I find I can get by without it. If that situation changes, I will look at other brands.

Good luck out there!

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