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Sleep Onset Transitional Central Sleep Apnea - Causes and Solutions?

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ReggieN +0 points · about 1 month ago Original Poster

Hi all, this is my first post and I'm glad to have found this forum. I have not yet had a sleep test, nor do I have a CPAP machine. I have reached out to my GP to get a referral for a sleep test. I'm hoping to get some context and advice on what is happening to me.

I've been experiencing frightening symptoms for the past few nights which seemed to be described here as "sleep onset transitional central sleep apnea". Exactly at the moment of falling asleep I stop breathing and awaken in terror. It repeats constantly and my nights are now sleepless. Going to bed is becoming a source of dread. The same thing occurs if I try to nap during the day. There is a song called "Sleeping Sickness" by City&Color that eerily describes this (lyrics here: https://www.azlyrics.com/lyrics/cityandcolour/thesleepingsickness.html)

Unfortunately all the threads about on these forums are old and locked, and there is no way to direct message the posters to ask if they were able to solve their problem and how they did it. It's also scary to see they had for months/years when I'm only a few days into this.

The threads I refer to are:

https://myapnea.org/forum/untreatable-sleep-onset-transitional-sleep-apnea (user CharmingDesertSandCoyote0755 "Joe" 3 yrs ago)

https://myapnea.org/forum/sleep-onset-central-sleep-apnea/1#comment-8133 (also CharmingDesertSandCoyote0755 "Joe" 3 yrs ago)

https://myapnea.org/forum/newbie-sleep-onset-apnea (user p3000g 3 yrs ago)

https://myapnea.org/forum/sleep-onset-apnea-01 (user SouthAfrican 2 yrs ago)

https://myapnea.org/replies/27904 (user Velacook 2 yrs ago)

There are 3 "solution" posts that make me hopeful, but they are also very old and aren't definitive about the solutions. One indicates it has to do with the body's mechanism/tolerance for measuring CO2 in the bloodstream and recommends breathing exercises to increase this tolerance:

https://myapnea.org/forum/how-i-cured-my-sleep-onset-transitional-sleep-apnea (user abc123 1 yr ago)

Another one indicates it's caused by long term stress and anxiety which burns out the adrenal gland and causes "Adrenal Fatigue", a condition that is recognized by naturopaths and integrative doctors, but not by traditional allopathic medicine:

https://myapnea.org/forum/sleep-onset-apnea-01/1#comment-28352

The third solution also indicates it is caused by stress and anxiety and recommends supplements as the solution:

https://myapnea.org/forum/sleep-onset-apnea-01/1#comment-28555

My question to the forum is - what is the latest on this? I don't see much since these 2-3yr old posts (my apologies if I've failed Search101). My gut tells me the cause is a combination of the ones I noted - in my case long term stress/anxiety has led me to do relaxation breathing regularly for over a decade and I think I might have trained my body to have a low tolerance for CO2 in my bloodstream because the belly breathing has kept me so well oxygenated for so long. Now when I get to the wake/sleep boundary my body can't tolerate even those few seconds with a higher CO2 level while it waits for my autonomic sleep breathing to kick in, and it pulls the alarm bells to WAKE UP AND BREATHE instead of just holding out a few seconds. I don't know why it would suddenly manifest now, however. I do know my anxiety levels are much higher in recent weeks so perhaps there is a connection there.

Any thoughts? Advice? Suggestions? Any help is greatly appreciated...

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ReggieN +0 points · 26 days ago Original Poster

Quick update from OP here - had my sleep test last night, results meeting with doctor is 4 weeks away so I don't know what it showed. In the interim I've been trying the Wim Hof breathing training that was recommended by this link: https://myapnea.org/forum/how-i-cured-my-sleep-onset-transitional-sleep-apnea (user abc123 1 yr ago) and it seems to be working. I've only had two recurrences of gasping awakening right on the cusp of sleep, but it didn' persist for many cycles like it was before, I was able to get to sleep a few minutes later. That poster might have been onto something, my thanks to whomever they are.

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Sierra +0 points · 26 days ago Sleep Patron

If you end up with a CPAP that supports OSCAR you will be able to look at the breathing flow in amazing detail (breath by breath) and see what is going on. May not be an obvious solution but you will see how you are breathing and when you stop. I recommend the ResMed AirSense 10 AutoSet machines, and they are compatible with OSCAR. I think some select clinics are selling the AirSense 11 machines, but I don't know if they are supported by OSCAR.

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ReggieN +0 points · 23 days ago Original Poster

Thanks, I will ask these questions when I get my consult at the end of Sep. I'm in Canada so the availability of different machines could be hit or miss, also what's covered/not covered under our gov't healthcare plan.

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Sierra +0 points · 22 days ago Sleep Patron

The ResMed website currently indicates that the AirSense 11 is only available at select sites in the US. Somewhere else I have seen that they only plan to sell them through sleep clinics and not through on line sites. Not sure what province you are in, but there is a bit of a sleep clinic vs on line CPAP store game that is played here. It varies from province to province, but in Alberta the common way of getting a CPAP is to be prescribed a sleep clinic trial. There are many clinics that offer them for free if they are prescribed by a doctor. They give you an at home sleep study machine to use overnight. You bring it back to them in the morning and they read the data off the machine and have it analyzed. A sleep clinic doctor in some unknown location reads it and diagnoses the apnea. This is provided to your doctor and if they agree, then a machine is prescribed. Most of these clinics will then give you a trial machine to use for a couple of weeks, again for free. If it works then they offer to sell it to you for about $2500. If your insurance pays for it, then I guess that is no big deal. But if it doesn't then there are alternatives to buy the machine from any number of different on line outlets for much less. When I got to this point I bought a AirSense 10 machine/mask kit for about $900 on line. For a long time machines surprisingly were selling in Canada for much less than in the US. ResMed has changed their pricing policy now and force retailers to meet a minimum selling price which I believe now for the AirSense 10 kit is $1270 or so.

The details vary by province and I believe Ontario actually pays for part of the machine but also requires an in lab sleep study instead of an at home version. In any case it pays to be aware of these issues if you get to the point of having a study done, trialing a machine, and then buying one.

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