CharmingDesertSandCoyote0755

I just wanted to say a big thank you to everyone who has replied, and the info about the CPAP settings etc., is very useful. I'm gonna look into it for sure, but as these problems pre-date my getting a CPAP, I don't think the way the CPAP is set up is going to be the cause of the problem, although there is every chance reconfiguring the settings could lead to improvements.

I'll try and respond properly to everyone soon. Also, if anyone else is going through this and wants to exchange email addresses so we can share any useful information we find out with each other, please let me know.

Best, Joe

Hi Darlene, thanks for your message.

I'm very sorry to hear that this is also happening to you, I know from first-hand experience how demoralising and upsetting this problem is. I also have spent a lot of time researching this online and finding little information, and none of the doctors I have seen know what to do either. I'm setting in to relax for the evening so I 'm only gonna write a short response here, but in response to your question, no, I don't have that sensation of panic or dread when this happens to me, I remain very calm. I get super angry and frustrated sometimes, but nothing like you've described.

If you'd be ok with it, I wonder f you'd be interested in exchanging email addresses or phone numbers so we can share any potentially useful information? (this goes for anyone else reading this who is suffering from the same problem)

Best, Joe

Wow, thanks so much. I have the ResMed bu6t have never heard of Sleepy Head. Do you take this info to your doctor to be analysed? While I definitely think that this data may turn out to be useful in trying to figure out what the problem is, I don´t think the problem is the CPAP itself. I have had these problems for over a year before getting the CPAP and in fact, things have been slightly better since starting using it. But I´ll look into this and see if y machine is compatible with Sleepy Head. Also, I don´t my apnea events will be flagged either, as they are so brief (I don´t use a ramp) but maybe this could shed some light on what is going on with my breathing patterns during the transition to sleep.

Thanks for your input.

For around two years now, I have been suffering from some kind of sleeping disorder which is making my life very difficult.

There is some kind of fluctuation/irregularity in my breathing rhythm that causes me to wake up exactly at the point of falling asleep. It can go on all night sometimes and, unless I take sleeping pills, happens every single night, and has done apart from a four-month period from Feb 2017 - June 2017.

I'm a life-long asthma and allergic rhinitis sufferer and therefore thought the problem must be related to this. I went to see a pulmonologist in September last year who gave me some inhalers to treat pulmonary obstruction. Several weeks later this hadn't worked so I had a sleep test. Based on the results, I bought a CPAP in December last year, which I feel helps a bit and generally makes it easier for me to breathe when I'm lying down, but doesn't really address the problem.

After 3 months of using the CPAP and not noticing any improvement, I decided that maybe the cause was neurological rather than pulmonary and went to see a neurologist with a specialisation in sleep disorders and had a sleep test sometime after. The results came back negative, there were no central sleep apneas according to this test, despite the fact that during the sleep test I had experienced these same problems. The doctor told me that the test could only measure apneas of at least 3-4 seconds, and mine are sometimes just a second or two long, at the exact moment of falling asleep, which may explain that.

I then decided to explore the possibility that it may be stress/anxiety related, despite the fact that I wasn't feeling particularly stressed or anxious, at least as far ad I was aware. I took sertraline for 5 weeks and noticed no difference in either my breathing problems at night or my mood and decided to discontinue it, gradually. I no longer use it and feel the same as when I did. I also went for hypnotherapy sessions, which I found very relaxing but didn't have any effect on my breathing problems. I also tried, and still do, breathing and relaxation exercises before bed, which again are very relaxing but do not make a difference to my breathing problems.

I decided to go back to exploring the possibility that it was physical rather than neurological or emotional, and saw two ear-nose-and-throat doctors, both of whom recommended having a septoplasty to correct my slightly deviated septum. I had the surgery on September 13th. The operation was a complete success and has almost fully healed, yet here I am at 3.35 in the morning (I'm in Mexico) unable to get to sleep due to this strange change in my breathing that occurs at the moment I fall asleep. I have done a lot of research online, and can find a couple of references to something called "transitional sleep apnea" or "sleep-onset apnea," which seems to kinda describe what I'm going through, but sadly doesn't seem to be a common occurrence and there's to be little known about it, let alone a consensus on what causes it or how to treat it.

About 6 months ago, I thought there was no way I could possibly carry on this way, but the problems have persisted and I simply don't have any choice but to carry on. Sleep deprivation is now the norm for me and the only way I can get to sleep at night is to take meds which make me fall asleep fast enough so that these events don't wake me up. These kind of meds, which I do my best to avoid, affect my mood, my memory and my concentration. I'm making mistakes at work and finding it difficult to remember things. I'm irritable. Most of all, I'm sick to death of this.

My next plan of action is to have cranial therapy. I have had one session already and again found it relaxing and am feeling (or trying to) feel optimistic that this may be of some benefit. Apparently, I have some issues with the bone structure in my head, probably due to some injuries that I received to my head when I was younger and the trauma from them. Also, according to this therapist, "energy" is not flowing up to my head like it is apparently supposed to. After having tried almost everything, I'm open to anything. If this doesn't prove to be of any use, I honestly can't think what to do.

Can anyone be of any help?

Thanks,

Joe

@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

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

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