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Sleep-onset Central Sleep Apnea

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CharmingDesertSandCoyote0755 +1 point · over 2 years ago Original Poster

Hi everyone, I just joined this site today after battling with sleep apnea for the past 15 months or so.

So, its kinda of a long story, but in October 2016 I started having severe difficulty sleeping. I'm a chronic asthmatic, so difficulty sleeping isn't something I'm new too, but this was different. Despite not feeling congested or having a chesty cough etc.., at the exact moment of falling asleep, I would stop breathing. I would then wake up in order to breathe, then fall right back to sleep, only to have the exact same thing happen, sometimes going on for hours every night. I have gotten used to getting up and trying to function on just 3/4 hours sleep, sometimes for weeks on end.

This has been going on for 15 months now, with some periods of respite now and then, and it's starting to really impact my quality of life in a very negative way. Over the past few weeks, I have been feeling exhausted and anxious, and have taken myself to the hospital twice feeling like I was on the brink of a full-blown panic attack, due to sleep deprivation, something I have never done before.

Obviously, when I first started having these problems, I attributed them to my chronic breathing problems, and spent the next year trying various inhalers, nose sprays, anti-histamines and anti-inflammatories to treat this, all under the supervision of a doctor, of course. I also had to use sleeping pills (normally night-time cough/cold medicine that didn't require prescriptions) every few days when things were getting really bad, but it was the only way I could get to sleep at night. Predictably, they left me waking up in the morning feeling lousy.

Things have been getting worse over the past 3/4 months, so I decided to ask my Dr for a CPAP machine, which he approved after giving me a sleep test, more on the results of that later. So two weeks ago a started using a CPAP, an automatic Philips Respironics, top of the line machine apparently. I also got some sedatives to get me through the first few nights as I was feeling anxious and panicky due to the sleep deficit on which I had been operating for weeks.

Over the past few days, I have stopped using the sleeping pills as I have started feeling less panicky and only ever viewed them as a very short-term solution, while I got adjusted to pressurized oxygen. This week, I have started going to bed with just the CPAP machine, after having adjusted the settings to minimum pressure 10 and making sure the mask fit right. And the same thing keeps happening.

The best way to describe it is that your body "forgets" to breathe when you are in the transitional stage between wakefulness and sleep, and you have to wake up in order to breathe. I find myself feeling nice and sleepy (without taking any sedatives/sleeping pills), perfectly comfortable wearing the mask and receiving pressurized oxygen, but that even with the CPAP, my brain isn't sending signals to my respiratory system, forcing me to wake up every time I need to breathe.

After researching my symptoms, I came across a very specialized form of sleep apnea called sleep-onset central apnea or transitional central sleep apnea, and reading the symptoms, it sums up EXACTLY my experience. Namely, inability to take breath during the transitional stage of sleep and having multiple sleep apneas and the onset of falling asleep, that a CPAP can't necessarily fix.

Now back to the results of my sleep test: Another thing that is consistent with my symptoms and sleep-onset central apnea, is that hyperventilation or "Cheyne Stoking breathing" occurs during sleep, as well as a significant drop in the level of oxygen in the blood. My sleep report described both of these symptoms, and also a lack of actual snoring, which is also consistent with central sleep apneas in general.

I've had to start taking the sleeping pills again and am worried that, after reading what I have read online, that there is very little known about effective treatments for this specific kind of apnea. Treatment normally involves going to see an army of expensive specialists who will require lots of expensive tests just to confirm the diagnosis, and none of whom can guarantee any effective treatment.

This sleep-onset central apnea has been causing lots of damage to my life for over a year now, but I always felt optimistic a solution would be found. The CPAP machine (which cost £1,000 out of my own pocket) was my last resort and had really hoped it would make things better for me.I'm now starting to feel apprehensive about my job, my future and whether taking sleeping pills and spending my days feeling like a zombie may be the best I can hope for. At the moment, it feels like it's either that or being sleep deprived and panicky.

I really, really would appreciate absolutely any insights/advice/experiences that anyone may have had with central sleep apnea, in particular, sleep-onset/transitional, as my apneas happen at this stage in the sleep cycle, rather than during deep sleep.

Please note, I am from the U.K and based in Mexico, and am unable to access medical treatment in the U.S.

Thank you so much for reading, and I really hope to hear from you soon.

Joe

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RationalEmeraldKoala5148 +2 points · over 2 years ago

Hi Joe,

"Sleep-onset central sleep apnea is not uncommon phenomenon, and is usually regarded as a normal sleep pattern."

https://www.e-jsm.org/journal/view.php?number=91

If you're waking up because of it, it may be that the machine's response to your apnea is the culprit. The Respironics machines send a single 2cm pulse of air lasting one second after you have had an apnea for ten seconds, in order to detect if your apnea is central or obstructive. That can be enough to wake you while you're transitioning into sleep.

The Resmed machines use a different method. They send a 1cm oscillating pulse starting a 4 seconds and continuing until the apnea stops. With Resmed, if you enable a timed ramp (not an auto ramp), the pulsing won't occur at all until the ramp time is over, which can allow you to avoid the pulsing until you get to sleep. You can disable the pulsing entirely if you have a ResMed BiLevel in Bi-level mode and turn Easy-Breathe OFF. Even in Bi-Level mode, you can set the pressure to be the same, so that the machine is essentially as CPAP.

Alternatively, you could buy a cheaper machine, like the Apex XT, which I've been told doesn't do anything to try to distinguish between central and obstructive apneas.

While I agree with your statement that taking sleep medications is generally a bad idea, both my father and a friend that I've known for twenty years have taken them every night for years. My dad takes Ambien and my friend takes an OTC (antihistamine type) medicine. While taking medications does involve risks, not getting enough sleep involves significant risks as well. I've begun experimenting with melatonin, with mixed results.

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sleeptech +2 points · over 2 years ago Sleep Enthusiast

Central onset events are not unusual - I see them all the time. Sometimes, as would seem to be your case, they can be worse than others. It can be a feature of normal sleep, but then so can pretty much anything. The question is more whether it is causing a problem and in your case it sounds like it is. Usually after a few months of using CPAP the onset events are less of a problem but that may not be happening for you. You said that your machine starts at 10? You may do well to start with a ramp from a lower pressure. Onset events can get worse as pressure increases, so this can usually be managed by using a ramp that starts your machine at 4 and steadily builds it up. This could reduce them impact of the onset events.

If this doesn't help then you may need ASV or even BiPAP. An in lab study may be very helpful in resolving this.

Rest assured you are not alone in this and it can be managed.

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CharmingDesertSandCoyote0755 +0 points · over 2 years ago Original Poster

Thanks for your comment.

I don't think it's due to the machine's response to the apnea, mainly because I have been experiencing this for about 18 months now, way, way before I got the machine. This isn't a new thing for me. The machine just doesn't seem to be addressing my apneas, which happen at sleep onset rather than deep sleep, and are therefore very short but enough to stop me from falling asleep.

I've tried the ramp but that doesn't help either. The thing about my translational apneas is that they go on all night sometimes, way beyond what is considered normal and, like I say, I really don't think they are due to the machine as I've been having these type of apneas for over a year before I even got it.

This week has been another terrible week, after thinking that things may have been starting to improve the week before. Every night this week has just been a case of going to bed exhausted and then falling asleep on breathing out, then waking up to breathe in, for hour after hour.

I'm gonna keep using the CPAP every night, as I don't find it uncomfortable or invasive at all and am having no problems drifting off to sleep using it. The problem is that is isn't helping me to breathe in the way I need it too and my transitional sleep apneas are still causing me real problems, which are only going to get worse until I find a solution.

Thanks to both of you,

Joe

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S2S +1 point · over 2 years ago

It might be that you are one of these people that is going to benefit from a more specialist machine than a straight forward cpcp or apap. Sleep clinics will always try (or should I say insurance companies) will always try the cheaper option first. If this does not work, they will then try the more expensive machines. This is what I have been told anyway, as I live in a country with an easier health system I have nothing to back this up with. However, this appears to be the general opinion of how it works.

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Apneaheadache +1 point · over 2 years ago

I have exactly the same problem 6 months ago. When i read your problem I imagined you describing my problem.. my life is like heaven because of that,

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CharmingDesertSandCoyote0755 +0 points · about 2 years ago Original Poster

@Apneadeadache: Really? Have you found anything that works?

Sorry for the late reply, the truth is that things got so bad the doctor prescribed me some sleeping pills, which Ive been using for the last 6 weeks or so. Ive been gradually bringing myself off them, and things were going ok, but now that Ive stopped them completely the exact same problems have come back.

Hope to hear from you soon,

Joe

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Stevef +0 points · about 2 years ago

Hi Joe,

I suffer from exactly the same problem. I have consulted 3 sleep specialists and they have never heard of this. Very frustrating. Have you had any progress?

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Alek +0 points · about 2 years ago

I have the exact same issue and I have had it for several years. After years of trying to figure out what the problem is I finally narrowed it down to sleep onset apnea.

Honestly, after dealing with this almost every night since May 2010, I had a 4 month period this last year where everything was totally fine and I slept like a log all night. No issues! I thought I was cured. Then it came back.

I had just gotten married and had an amazing honeymoon. My prospects were all lined up for my future and I hadn’t a worry in the world. That’s when it went away. “Coincidentally” it came back (seemingly to stay) once things started to get a little rocky with school and finances again.

Still trying to get back to that mental state to see if that was a key but it’s been tough and I’ve been having trouble Again for a few months. There are some placebo things that seem to help for like a week then stop working randomly, adding to my theory that this is all stress/anxiety related.

I thought for awhile the issue might’ve been from Silent Reflux as treating myself for that seemed to help wonderfully with my breathing issues but it stopped helping before long and I’m back to thinking it’s all mental!

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S2S +0 points · about 2 years ago

Hi Alex, Do you suffer from stress/anxiety as this can have strange affects on a lot of things in your life? Stress can have a large effect on your life that can bring on other things and if this comes along with anxiety attacks can be devastating on your well-being. It is very easy for someone to say try not to get stressed but that is not easy for some people. Count to ten and take a deep breath. I don't know of any study that has been done on Sleep Apnea sufferers concerning stress, but these studies can be picked apart due to the way they do some of them.

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VikkiLM2008 +0 points · about 2 years ago

Hi There,

I would like to say the sleeping pills help you transition to sleep by making you tired enough that your body is sleeping through the events. Sleeping meds do not cure sleep apnea.

Are the apneas occurring while you are on your back? Sleeping on your side can often improve sleep onset events.

Did I read you personally adjusted the pressure on your machine? I may have misunderstood. But if you did adjust it yourself please, please have it changed back to the setting prescribed by your doctor. The number is based on objective data obtained from diagnostic equipment. The wrong setting can possibly cause an increase in central apneas

Hope things get better soon for you!

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