Raquel2: I know of a neurologist turned sleep doc, who, two years after becoming a sleep doc realized HE had sleep apnea. But because he was slender, he had a very hard time getting insurance to pay for his sleep study. So, knowing what the screening questionnaires would ask, he simply gamed the questionnaires to get the study.
He turned out to have an AHI of 28. The stereotype that says that only middle-aged, morbidly-obese males have sleep apnea is killing people. But most sleep docs still subscribe to it, sadly.
None of the questionnaires are validated, and many of them will very effectively screen out young, thin women, or just thin people in general. I was misdiagnosed with anxiety and insomnia for decades, when all the time the problem was that I obstructed so severely during REM that couldn’t sustain REM sleep and I would regularly desaturate to 60%, which is life threatening.
There is a lot wrong with this field.
Ideally, your machine should be PREVENTING obstructive apneas by keeping your airway open. That’s the point of the positive air pressures. And the algorithms are designed to anticipate a collapsing airway and provide increased pressures before you actually experience an apnea. The machine can detect the narrowing of the airway in a hypopnea and impending obstructive event and increase pressures pretty quickly to avoid it. RESMED says their machines can do so within three breaths. So, my questions would be: 1) what machine and settings are you using? 2) is your machine working properly? 3) And what’s your residual AHI?
There can be a lot of variation from night to night and many different things can contribute to that: the weather, including humidity, allergies or nasal congestion, what you ate or drank, and whether you are coming down with even a mild a respiratory infection, etc. sometimes you can find a physician who will prescribe a machine, but if your condition is milder than what your medical system/insurance is willing pay to treat, you may need to pay out of pocket.
You could have centrals, but there are also other possibilities. A friend of mine had something similar to what you are describing. He was Hypo or hyper ventilating shortly after he fell asleep. He was trying to adjust to using a CPAP, but it really interfered with his ability to achieve adherence.
You really DO need a sleep study. Preferably an in lab study, but often insurance will pay for only an HST. And centrals might also explain the lack of snoring. Obtaining good medical care when you are far from major metropolitan areas is a problem in the USA, as well. But going to the sleep lab location, if there is any way you can do it, may be your best option.
One problem is that sleep apnea is very heterogeneous and there are apparently several different “types”. A second problem is that there is a stereotype that the condition is prevalent in only middle-aged, morbidly obese males- and that stereotype is false and, IMHO, killing people. A third issue is that, yes, you CAN have sleep apnea without ever being told that you snore- or snoring only very rarely, because I did!
Your experience sounds very similar to mine. I am female, now 74, and have what is considered only “moderate” sleep apnea, but it was much worse than “moderate”.
When I self-diagnosed and finally got a PSG at age 56 (2004) I had an overall AHI of only 19–but during REM it was 83! That is, when I could even MAINTAIN REM sleep, which wasn’t often, because I was regularly desaturating below 60% during REM.
But, of course, I didn’t know that when I was your age.
In retrospect, I stopped dreaming at puberty (voice box descends in both genders, then, crowding the airway.) I noticed it at the time, but just thought that for some reason I had merely stopped remembering my dreams. I even asked my parents whether they remembered their dreams- Mom did, and Dad never did.
After I self-diagnosed 40 years later, I diagnosed Dad-(he had an AHI of 56!!) but by then he was 78 and, sadly, had sustained too much damage (stroke and dementia) to successfully achieve adherent PAP treatment. He died at 82 from a CV event. However, Mom, who dreams every night, is still living independently at 95.
My brother, age 70, whom I also diagnosed, but who won’t use his CPAP, is not doing so well and has had two heart attacks. BTW, my brother is, and my father was, of very normal weight. I was too, until menopause, when I went from normal to overweight.
But no one was obese. And I had apnea so severe that I couldn’t maintain REM sleep from the age of 12. As a young adult I had a BMI of only about 20.
By my late teens I had PVCs—-what you called extrasystoles—so severe that every other heartbeat was premature and not pumping blood. That is called “premature bigeminy”. I spent a lot of time with cardiologists who were seemingly mystified. I even spent a week in a hospital once undergoing many tests trying to get a diagnosis. They were looking for a “floppy mitral valve”. This was the late 60s and 70s. No one knew anything about sleep apnea that early. It was only discovered in a sleep lab in 1967.
You should also be checked for pre-diabetes. The PVCs can also be related to reactive hypoglycemia. And Sleep apnea is suspected of causing Type 2 Diabetes. The disrupted sleep causes insulin resistance and the hypoxia kills Beta cells which are highly susceptible to hypoxia.
I was trying to get diagnosed from about the age of 28. At that time, after surgery for a broken kneecap, I started waking up after 3.5 hours EVERY night, unable to return to sleep for about three hours. I also fell asleep early EVERY night “before my head hit the pillow”. That is also NOT normal. And although I described it quite accurately, dozens of doctors from different specialities completely missed the diagnosis.
This was the late 70’s. Although sleep apnea had been discovered in a sleep lab, doctors generally knew little or nothing about it and there was, as yet, no treatment. Since I was of normal weight, even had they diagnosed it, the only treatment they could have offered would have been a tracheotomy. CPAPs weren’t invented until the early 80s.
You’re on the right track with the overnight oximetry. But take it up a notch and record yourself sleeping- using both video and sound recording. Your apneas and struggles to breathe during sleep should become obvious. Take those recordings to the best sleep lab you can find, together with your overnight oximetry recordings and demand a sleep test.
It is possible that, like me, you don’t snore much because you are obstructing mostly during REM, which you can’t maintain. I suspect I go from having almost no apneas during non-REM to constant apneas during REM, such that I can’t maintain REM , but still have a relatively low overall AHI.
Are you awakening every night after about 3.5 hours of sleep? That is when the first major REM cycle occurs in most people. And you may be missing a lot of REM sleep. Do you dream?
And in what country are you located? I have contacts who may be able to identify some good sleep labs or doctors near you.
Do as much reading about SA as you can. I helped found the Alliance of Sleep Apnea Partners (ASAP) a non-profit dedicated to improving diagnosis and treatment and have written a number of book reviews which appear on the apneapartners.org website.
I’d recommend you read “Deadly Sleep” by Dr. Mack Jones, first. It’s available on Amazon, I believe. He is a neurologist turned sleep doc, who, after two years as a sleep doc, realized he had the condition himself. But because he was thin, to get the test, he had to game the screening questionnaire-(there are a couple of different ones) which as a sleep doc he easily knew how to do. He had an AHI of 27 and the book talks about his challenges in getting diagnosed and treated.
BTW, one of the problems with the screening questionnaires is that some of them tend to screen men IN, and screen women OUT. And they have never even been validated.
Anyway, keep me posted. I’ll try to help. I’m in the USA in the Eastern Time Zone.
Agree with Sierra. You need to ask the sleep doc.
In a sleep lab they make you sleep on your back, because they want to see your sleep apnea at its worst. Anything that interferes with that may mean you will not be diagnosed and get the treatment you really need. I would think, therefore, that they would want to see how you sleep unaided by any gadgets or intervention to get the most accurate diagnostic measurements. But check with your sleep doc.
When first starting therapy many of us have had to try five or six masks (or even more) to find one that worked well and didn't leak too much. It is a journey. And just when you get one you like, the manufacturer stops making it, and you have to search all over again. Of course they are always looking to make them more cheaply and that can interfere with quality and ease of usage by the patients. I believe there is also software to help with mask fitting.
Go back to your sleep lab and have the techs there work with you to find a better fitting mask. There may also be some pads that might help. Good Luck!