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Hi, blackadder337!
Have you checked your overnight O2 desaturation levels? If you are awakening with your heart racing, it could be because you are desaturating badly. Borrow or buy an overnight recording oximeter, and test yourself. They’re available online and not too expensive. Good item to have in the house anyway, like a blood pressure cuff or thermometer.
Also, have you developed any related comorbidities? Like COPD, CVD, HBP, AFIB, DM2, etc? Those could be influencing things….
It depends. If you desaturate badly, and I do (to below 60%) NOT using the machine can be life threatening. It’s NOT merely about the sleep. It’s about the O2.
BTW, there is a recent French study showing an increase in all cause mortality upon cessation of use of PAP.
Just be certain that there is NO heat on in either the humidifier or the hose, or things will get REALLY dry....
Use of the Ozone sanitizers voids most manufacturers’ warranties. Use of the UV sanitizers may do the same. I would check that out before buying or using them.
BUG: one of our Board members at the Alliance of Sleep Apnea Partner (ASAP) Apnea partners.org, a sister organization to MyApnea.org, also suffers from RBD, in addition to OSA. He’s approaching it as an activist and participating in a lot of clinical trials.
If you wish, I could put you in touch with him..He’s tried a lot of things, I suspect.
No, but I’ve been tempted by them. Interesting to hear a success story. Maybe I’ll try one. Are the pockets with pellets only around the edges? Or allover? And how does the cool factor work?
Correct, Sierra! Robert Thomas was the Doctor involved. I’m no longer in touch with the patient, but this treatment occurred within the last four or five years, when VPAPs were already available. However, I wasn’t aware of any altitude issues in her treatment. However, a couple of years prior to my own diagnosis I went on a Safari to equatorial Africa at an altitude of 8500 feet and had a constant headache (and I almost never get headaches) and felt slightly ill the entire trip. I later discovered on a trip to Denver, that at even 6000 feet the air pressure is only about 80% of what it would be at sea level, which has a major impact on breathing ann SA. (I was thankful that on the Safari trip I had declined the side adventure to climb Mt. Kilimanjaro. I wouldn’t have fared well. It was a company awards trips and our CEO had to be helicoptered off the mountain. He was later found to have—you guessed it- SA.
That’s what I used to think, too. But this was recently in response to a situation where the patient had low pressure requirements and a CO2 issue that was causing low ventilatory drive. It was a CO2 management issue.
I know someone who was successfully treated with a fixed pressure CPAP for complex apnea by an expert on the subject at BWGH at Harvard. I was VERY surprised (actually shocked) because I fully expected that she would require a VPAP. It had something to do with managing CO2 levels and the ventilatory drive, but I can’t explain the details.
In the US, it is unlawful for the docs to sell the machines (I think it’s called the Starkey Act) si it falls to the DMEs.) That worked reasonably well until about 2013, when Medicare unfortunately drove the DMEs into an overly competitive bidding process, with the result that the DMEs replaced their respiratory therapists with least common denominator delivery personnel, who don’t do much more than dropping off the machines. So, all too often, the patients are left on their own.
My sleep lab, however, had an excellent manager who devoted several hours a day to helping patients set up and trouble-shoot their machines and pressures. but I’m afraid that situation is more the exception than the rule. I was lucky.
