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...
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.
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.
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.
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.
Update from OP. Sleep test results showed an average of 14 stop-breathing events per hour, and blood O2 levels stayed above 90% the whole time. Spent 75% of sleep on my back. Doctor said this represented a mild/moderate case of sleep apnea and said I could benefit from CPAP. I'm scheduled to go in to review the available machines in 2 weeks and then choose one and do another sleep test with it. He said he was pretty sure all the available models export the OSCAR data. I asked about dental appliances instead of CPAP and he said they don't do that at his clinic and told me to consult with my dentist about that solution if I want to go that route.
The original problem that led me here and to get the sleep test referral is completely gone. I really believe that the Wim Hof breathing practice solved it as I described above. I tried to discuss this with the doctor and to ask about the science of how the body measures blood CO2 and O2 and responds to it but he wasn't interested, he just said "well you can't do that breathing technique when you're sleeping" (completely missing my point). He seemed to be a "CPAP or nothing" kind of guy. Gut reaction is that I'm being rushed/railroaded into it.
Did you get a report from the study as to what the breakdown of the AHI was? OA, CA, hypopnea? That is helpful in understanding the type of apena you have. You mention breathing control which reminds me of my wife's "yoga breathing" that she used to get to sleep if she wakes up in the night. It might work, but from looking at her sleep data it kind of blows her AHI score out of the water. It involves holding your breath, and each time she does it the CPAP records an obstructive event.
You may be interested in this article about complex sleep apnea in the blog section here. It talks about how the O2, CO2, levels interact to control breathing.
Hi Sierra - Unfortunately it was a phone consult and I only received the limited info I mentioned above. I did read the complex sleep apnea article pretty much right after I arrived here. In my case I believe the post I linked nailed it with respect to my condition - I programmed myself for high oxygenation / low CO2 by doing a lot of anxiety-relieving deep belly breathing, and then at sleep transition where the CO2 got higher my body was reacting negatively (ie: screaming to WAKE UP AND BREATHE). The Wim Hof breathing practice (hold breath as long as possible on empty lungs) re-acclimatized my body to a higer CO2 level and it made the sleep transition reaction go away. This may be a terrible case of bad science / high belief on my part but my primary issue is resolved. I hope it can help others. I am still considering whether or not to start CPAP or try a dental appliance. My thanks for your presence here and responses, I think this forum has great value and I hope the other thread about it slowly dying proves to be wrong.
Your apnea is within the range that can be treated with a dental appliance. One issue is that you get no feedback on how well your apnea is being treated, short of having a sleep study done with the appliance in place. And, unless you have insurance that covers it, the appliance is quite expensive in most places.
I THOUGHT my Sleep Apnea (solely obstructive) at an overall AHI of 19 was within the range that could be treated with a dental appliance. So, I paid $2000 (this was several years ago) out of pocket for one to use when traveling. Then I went to Berlin for a week and used the dental device the whole time. By the end of that week I was a zombie.
If, like most people, your apnea is much worse in REM than in non-REM sleep, your overall AHI number may, unfortunately, be rather misleading. While your overall number may be within the dental device range, what about your AHI during REM? I couldn’t maintain REM sleep using the dental device because it couldn't remotely handle my AHI of 83 during REM.
So, I used the dental device for that week and never used it again. There are reasons why PAP tis considered the “Gold Standard” of Sleep apnea treatment.
Of course, a dental device or even a CPAP or APAP is unlikely to be able to do much for centrals. For that you usually need a VPAP. From what I hear, treating centrals is quite tricky. It may be a good idea to seek out a doc who specializes in that.
I don’t really know anything about the breathing technique you referenced.
However, I DO know this much: using AHI and O2 desats to diagnose, and particularly to determine, from a definitional standpoint, whether a patient “has” SA, has been very unsatisfactory for all of the following reasons:
1) The AHI definition requires breathing cessation of at least 10 seconds duration combined with a desat of 4%.
Many people will be symptomatic even with shorter apneas and less desaturation. In particular, many women and children will not be diagnosed under those standards, or will be sicker and more at risk than their AHI categorization would indicate, because they typically have shorter duration apneas and lower desaturation rates. So they will show up with RERAS rather than apneas and hyponeas. And then insurers won’t pay for a machine for them.
2) The AHI is reported as an average, but may vary greatly throughout the night. E.g.it may be FAR higher during REM than non-REM sleep. In some cases apneas may meet the definitional standards only during REM sleep
3) the AHI, taken alone, doesn't rally tell you much, clinically speaking.
As a result there is currently research underway to study the effects on the heart during sleep apnea events.
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On the other hand I don't believe that the NHS in the UK will even prescribe a CPAP unless your AHI is more than 15.
In the US the standard used to be 5. But now it is 15, unless there is at least one comorbidity, in which case it reverts to 5. The insurers are being “penny wise, and pound foolish”. Actually, I suspect the insurers think that the expensive fallout of under-treatment will occur on Medicare’s watch, not theirs.
Directed to ABC123 and ReggieN. Thanks for your post!! I have the exact same thing going on, and my research has provided me with little help and little hope. I had this issue several years back, brought on by stress and basically just drugged myself with Xanax in order to get some sleep. This time it has come on after Covid with a slight case of pneumonia which I believe has resolved. Going to Dr. today. My ear eaustachian tube has been blocked, which makes me hear my breathing louder when I’m trying to go to sleep, which increases the anxiety. Hopefully I can get this resolved. Going on about 10 days. I just saw your post last night and wanted to say thanks for giving me some hope.
Hi i don't know how old this is but I have a question, I'm going through the same thing and doing my research, I think the co2 thing makes sense My question is about how you said the belly breathing made it worse? I've been told to do this by my therapist ( very recently so it's not the culprit) for my anxiety. I assumed it would have the same effect as holding your breath? Is this not the case? I'm a bit confused Thanks!
Hi Becca, I did years of regular belly breathing for anxiety. It is an amazing solution for that problem, changed my life really. The person I credit is Eli Bay and his "Empowered Breathing" relaxation tape. My belief is that doing that deep breathing so frequently oxygenated my blood to high levels which became the norm for my body. Then at sleep transition time when breathing becomes autonomic and more typical, those O2 levels dropped, CO2 increased, and my body was reacting with a terrorful "WAKE UP AND GET MORE OXYGEN" response. Wim Hof breathing went the other way - exhale and hold, get used to higher C02 levels, and my body's terror reaction subsided. I know you mentioned elsewhere the Wim Hof doesn't seem to be working for you, which I'm sorry to hear....this is a horrible state to be in so I will say a prayer that you find a solution.
Thank you for such a kind message. I have actually found something called the sleep coach school on you tube and its the only professional Ive seen acknowledge this specific thing. He says it's basically a normal thing that happens and it's harmless etc so even that has helped take some of the fear away. I won't go on about his theories but he seems to really know what he's talking about, so for anyone who might be interested, he has a book about insomnia called This Is Natto by Daniel Erichsen. You can get it on Amazon. The YouTube channel has a playlist specifically about what he calls hypnic awareness and an Instagram account. Good luck everyone
Hello. I am feeling those symptoms as well. So scary 😟. Any update?
I'm still fine, never started CPAP nor did I invest in a dental appliance, and I've had no recurrences of the sleep transition apnea/wake up gasping. I haven't done Wim Hof breathing practice in the last year. I believe that doing Wim Hof for that short period of a few weeks really trained my brain that higher CO2 levels at sleep transition didn't require a fight/flight reaction, so my body no longer reacts that way. I did make a few other changes around that time - bought a treadmill and still do about 30mins/day vigourous walking, which was a component of some of the other advice given for this problem. I lost about 15lbs then gained back because beer is just too tasty. Despite the treadmill daily I still believe the Wim Hof was the key.
Good luck deinhac, it's a awful situation to fear going to bed and I hope you find something that works.
Hello all,
I know this is a very old thread, but as it's one of the only things that comes up for people who have our problem, I though it's useful to keep everyone posted.
Like everyone here, I was confounded and shocked by this sudden ailment, back in late August. Out of nowhere, I was suddenly stricken, unable to fall asleep at all. Every time I would just be drifting off, a powerful surge of adrenaline would shoot through my whole body, forcing my heart to race and wake me up, sometimes with a sense of not being able to breathe. This would happen over and over and over, all night, until the sun rose. By the third day, I really feared I was going to completely lose my mind. A truly horrifying experience. It really felt like my body forgot how to fall asleep, and I was going to die from it, or spend the rest of my life like this, a zombie. I had never had any history of anxiety or panic attacks or anything of this nature, so I had no idea what was going on.
Finding this thread was one of the things that gave me at least some hope, if only proving that I wasn't just losing my mind and that this was a real phenomenon, so thank you for everyone who posted here.
After three days of no sleep, I drank the better part of a bottle of Whisky just to force myself to pass out (which worked!) I woke up massively hung over, but it was just a relief to have gotten some manner of sleep. After that I tried every over the counter sleep aid to no effect. Melatonin, Walsom, etc.... all did nothing. As many people on here have said, you almost develop a fear or dread of trying to sleep, which only makes the cycle worse. I went to the doctor but they could find nothing wrong physically. At first they only prescribed Trazadone, which didn't really have a strong effect. After much urging, they finally prescribed Ambien. I know the risks of addiction are strong and all that, but it was the only pill that truly worked. One of those, and I was out like a light in 15 minutes, with no side effects. It wasn't until I had Ambien that I could sleep through more than one consecutive night in a row, so to anyone at the end of their rope, I would try that as a temporary solution.
I was wary of the long term addiction effects though, so I began switching to Trazadone some nights, and eventually tried weaning myself off of them. The first night I slept without any meds I thought I was cured, only to have it come back the next night. A sleep study told me to try a CPAP machine, but I found that experience so horrible that I couldn't use it for more than 20 minutes; just wasn't for me. Actually, the experience was so bad that as soon as I took off the CPAP, I fell asleep normally, without meds. I honestly wonder if it shocked my body back to its normal state. But from then on, about November 9, I could sleep with no issues again, and I'm now completely back to normal.
So the entire experience was about 2 months. To any of those stumbling upon this thread as I did, and being terrified of being stuck with this problem forever, I can only offer you some hope that it will pass. I can only say what worked for me, using ambien/trazadone in the interim until your bodies rhythms go back to normal. Still have no idea what caused it, but I'm back to my old sleep habits, so try and hang in there!
There is a website started by a pharmacist that was concerned about the use of sleeping pills especially in the elderly. It apparently significantly increases the risk of falling and breaking a hip etc... There are a lot of good tips there including the use of the CBTi process.
This is one of the best descriptions of this condition. For me, I’m convinced it’s a pulmonary issue. It typically happens when I’m congested or wheezing. Most of the times it’s accompanied by dyspnea throughout the day or especially at night.
I suspect you're right. One of the things that this problem caused was hyper-awareness of my breathing, and a feeling like if I stopped concentrating, I'd stop breathing. The very act of thinking like that would kind of make it true, and exacerbate the problem. But at the height of my episode, I definitely had pulmonary concerns, and even went to the ER to get my breathing checked out (though they couldn't find anything).
I'd recommend discussing your findings with a healthcare professional once you've had your sleep test. They'll be able to provide you with the most accurate diagnosis and guide you on the best course of action.
As you see, sstress and anxiety can indeed have various effects on our bodies, including sleep disturbances. Recent changes in your stress levels may be contributing to your current experience.
In the meantime, you could consider relaxation techniques to help manage stress and anxiety. Also, you can try natural remedies, such as CBD. You can get a cannabis card for that from releaf.co.uk. Besides, breathing exercises and mindfulness practices might be helpful.
