Sleep Apnea — CPAP Journal

Background

Around 6 years ago (c. 2016) I was referred to a sleep clinic for sleep apnea, but I didn't attend. Why? Because it seemed to resolve by itself. I had all the symptoms: regardless of how long I "slept", I felt like utter shit. I suffered this for years. BUT, this only happened when my weight went above 85kg. Around the same period, I had to stop lifting and lost a lot of muscle. The apnea events seemed to go away. But, I don't think they did - they are often unbeknownst to the sufferer.

Fast forward a few years and the condition worsened. So much so, that I would find myself gasping myself awake, often finding myself on my hands and knees gasping for air on the carpet. That scared the hell out of anyone who witnessed it first hand, and really traumatised me, making me outright petrified of going to sleep.

Fast forward to late 2021, after gaining weight to nearly 100kg by trying to move into men's physique, my sleep apnea became absolutely unbearable. Despite being less than 10% bodyfat, the body just doesn't seem to care. A thick neck (18" currently) causes apnea. If I had a job, I would have got the sack for falling asleep at my desk.

2022 January: I decided to take action and got a "moderate sleep apnea" diagnosis again (9 times per hour I would stop breathing for at least 10 seconds throughout the night). The theory is, whilst having these events, you effectively do not "sleep" at all (I use the word "sleep" in inverted commas because with sleep apnea you don't really sleep, you just think you are asleep). Your body kicks you into light sleep as soon as it tries to enter REM as the throat just collapses.

It's one of those conditions that either your partner points out, or you figure it out yourself because you feel like and look like complete shit all day.

Me with my CPAP mask for sleep apnea. I weigh 98kg here, but also had sleep apnea episodes around 80 - 85kg. But, not as bad.

I am using:

1. AirSense 10 AutoSet CPAP Machine
2. Simplus Full Face Mask

Wednesday, 9 February 2022

That is good for me. I got up at 3am (that's my usual time. I would prefer to wake up at 6 or 7, but the 3am wakeup is ingrained in me currently). I expected to feel like total shit, as usual - i.e. wake at 3, turn on the computer, do nothing, read the Daily Mail, and hope to God I get tired enough to go back to bed. Even after going back to bed, I still felt like shit. Was it my anaemia? How can it be now I have restored iron and haemoglobin? Apparently - even though resolving anaemia helped my daily energy significantly - it's not the fundamental issue with my chronic fatigue.

Last night was my first night using a CPAP machine, though. Those 5 hours I got felt like I got 8 hours sleep without the device. I am showered at 6am, my legs don't feel dull and achey. I can bend to put my shoes on without that dull fatigued "dead leg" feeling. I even feel like I could do morning cardio again, but am currently advised against doing so by the iron clinic.

This is just day one. I don't want to jump the gun, and a lot of this could be placebo fuelled excitement. I am going to try to document this every day if my motivation to do so continues. Either way, I want to comprehensively conclude whether CPAP works for me or not.

Thursday, 10 February 2022

This is an absolute record for months for me (e.g. compared to 4.5 yesterday, and typically 3). The app on my CPAP and the Fitbit oxygenation graphs both show me that my mask hose fell off for the first 4 hours of "sleep". Therefore, it is probably fairer to say I slept 4 hours in total as the first 4 were half-wasted.

I went to bed early at 7pm last night. I added a few confounding variables which doesn't make this a completely fair test:

1. I increased my prescribed amitriptyline (it is an old TCA often used for insomnia to 50mg from 25mg). I am prescribed 50mg, but prefer 25mg. I want to stop using this shit ASAP as it is a histamine and causes morning lethargy.
2. I read some USA sleep clinics prescribe Z-drugs like ambien (zolpidem) to help you get used to the mask. I still can't get used to waking up feeling like I am in Saw 2 with a bear mask on my face. In the absence of Z-drugs, I used 0.5mg xanax, which basically does the same job with a longer half life.

RESULTS



This morning at 5.20am, I feel OK. I just dropped a pen by my desk and picked it up immediately again instead of leaving it for days (normally I would feel too fucked to bend down to pick it up) - again, this could still be the initial placebo excitement. The fact that I am motivated to write this blog first thing in the morning when normally I would have double vision and find it hard to stay sitting upright in an office chair is positive.

One marker of success is: I only had to urinate 1 time tonight. My average is 3 - 6. I had many investigations as to why that is, enlarged prostate, poor bladder control, PSA etc. The NHS doctor basically knew fuck all (as usual).

Presumably, when the kidneys, bladder etc are properly oxygenated and subconscious awakenings disappear, the production of nocturnal urine is halted (as it should be). This is definitely a good sign that cannot be attributed to placebo

So far, so good. I need to work on the mask problem. I don't want to be a drama queen, but I definitely have some type of PTSD trauma from not being able to sleep properly for years. I think that will take some time for my body to "forget".

For the first time, I actually don't feel frightened to go to bed tonight. We will see.

Friday, 11 February 2022

I wanted to sleep more, but this is still double my recent averages. I went to bed at 8:52 and woke at 1am, 2am, 3am, then eventually got up at 3:21am. The frequent awakenings were definitely not sleep apnea events - instead I trained shoulders yesterday which aggravates my teres minors and side sleeping becomes impossible so I toss/turn from left/right each time I wake with shoulder impingement pain.

I am advised to learn to sleep on my back by my physio, but have never managed to do so as previously this was the position I would gasp awake most often or awake in sleep paralysis.

This morning (as I write this at 4:21am) I feel OK again. I am surprised again as normally I open my laptop and collapse on it with a coffee in one hand and e-cig in the other (even after taking 100mg modafinil I was effectively suffering a form of narcolepsy). But I have no desire to return to bed. Still, being awake at 3 or 4 with FA to do still sucks. I may have to try going to bed around 11pm like normal people do. (The only reason I haven't done that in ages is because I would wake up 3 irrespective of the time I went to bed).

My assumption is that I slept better with no deoxygenation events, but the nights sleep was mired by shoulder pain. So, I can't draw any major conclusions from today other than after waking I have no need to return to bed (which would previously often be multiple times).

One other thing I noticed: after using the device I wake up with full nasal congestion. After blowing my nose these past three mornings, I get gunk out like I'm ill. I think this can be mitigated by adding a humidifier to the CPAP device.

Whilst not a perfect night sleep, I recall only one event of nocturia during the night.

Saturday, 12 February 2022

Typically, I would be on my laptop at 3am waiting for the first crash. Last night was rough as hell due to inadvertently side sleeping and waking up feeling like I've torn a shoulder - roll over, repeat. Fitbit says 24 awakenings - that sounds about right. I busted my balls in the gym yesterday, took too much pre (pre-workout), got too high, and trained 1 hour 53 minutes inadvertently, so this is to be expected.

I would expect normally to feel like absolute shit today after that, but I've been awake 1 hour so far and no crash whatsoever. In fact I'm hammering away at the keyboard at 120wpm without squinting to see the screen. I may even brave opening my emails for once instead of procrastinating for days.

Also, with 24 awakenings, I would expect at least 4 nocturia events - I recall only 1. That is a big deal.

One of my most useful barometers appears to be the complete absence of my legs feeling like they are lead. Standing up to go to the kitchen is no longer a "fuck sake, I'll do it later" event - instead I can do it multiple times without thinking.

I am reasonably confident CPAP is making a significant improvement to my quality of life (Which I would have rated 2 or 3 out of 10 in recent months, and probably 6+ now). I could still be wrong. Placebo is a powerful thing and it's only day 4.

This diary may seem verbose, but given that I am only one point of data, I prefer to keep as much documented as possible. What I don't want to happen is for someone to come across this unfinished and for them to get false hope, so I plan to finish it with a conclusion rather than leave it hanging like nearly every CPAP forum post out there.

I am going to try today with only 50mg modafinil. I could try 0, but I use it as an appetite suppressant more than anti-narcolepsy and study aid these days, and 50mg usually does the job. (NB. prior to CPAP, without usage of drugs such as modafinil, coffee and nicotine I would be about as useful as a quadriplegic in a 100 meter sprint - having to use stimulants to get through the day is not healthy).

What disabled me from sleeping more was nasal congestion from the mask. You know that green gunk you blow out your nose when you're coming down with a cold that won't rinse down the sink? This morning I had to get tissues full of the stuff out, and I'm still blocked up. Not only that it makes me start sneezing and coughing into the mask, fully awakening me.

That is annoying because I still feel a state of sleep debt and wish I was one of those people who could just "lie in" right now to catch up. Prior to apnea DX, I was sure it was psychological. I think if my nose wasn't full of shite after a few hours with the mask I may be able to sleep more - thankfully the solution is meant to be pretty easy - buy a humidifier for the CPAP. I avoided that as I hoped to get away without it, not due to cost but due to maintenance burden.

NB. I did not take any tranquilizers last night - I am getting used to the mask. But I'm still running the increased amitriptyline @ 50mg. It's not a pretty sight seeing Hannibal Lector in the mirror when you have to go for a piss, though.


The picture shows 1) close to 0 sleep apnea events (deoxygenation), 2) no issues with mask seal (I tightened it), 3) 5 mask off events - this was mostly due to having to pull it off to blow my nose and sip water. But, fundamentally it shows I am getting used to the mask.

Daily opinion: Still, so far so good. Still feeling positive about this. It's almost hard to comprehend how I feel so consistently fucking good compared to the shit I've been going through on/off for years.

Sunday, 13 February 2022

Although total sleep time was above the target of 7 hours, I just kept waking up. The main issue is trying to sleep on my back to prevent shoulder pain, but the DOMS in my upper back was so brutal I basically couldn't sleep in any position. I ended up eating NSAIDs like smarties but still woke up 46 times according to Fitbit.

I first woke up at 1am with brutal nasal and throat congestion - it took me about 10 minutes to clear my throat and nose. I thought I had no chance of going back to sleep after that ordeal, but somehow I was able to.

Surprisingly, only 2 nocturia events. So, I presume, whatever broken sleep I did get was not apnea-type sleep.

I write this at 6:03am as I wanted to mull around before making a judgement. But, again, it looks good. I have no desire to return to bed and initial energy levels are looking good.

I should mention that yesterday I had so much energy, I had nothing to do so wanted to test the limits a bit and skipped the weekly rest day in the gym. I didn't seem to run out of energy and was pacing up and down and cleaning my hotel room all evening.

I am becoming increasingly confident that mitigating apnea events is the biggest piece of the puzzle in solving this chronic fatigue. But, I am a little disappointed: I have such sleep deprivation from the past few months I was hoping for a miracle in that I would be able to sleep 10 hours a day until caught up. So, it appears my sleep quality is increased, but total sleep time is still a battle - I was told that was always anxiety related.

Today is definitely a day out of the gym and lots of foam rolling to make sleep less painful.

Monday, 14 February 2022

Day 6 with CPAP.

So it says I slept nearly 8 hours, but it also says I was awake 1 hour 32 of that with many nocturnal awakenings and lots of tossing/turning - all due to shoulder pain. I need to learn to sleep on my back; I have no idea how to do it - yet. I used to get sleep paralysis on my back when I was younger (T minus ten years), and the golden rule around the forums back then was "sleep on your side". I don't fear sleep paralysis anymore, so I will persist.

Only 1 nocturia event - brilliant. Everything I can see in the apps shows CPAP has, thus far, kept my airway open without failure. (Well, almost - last night it says 0.6 events per hour, which equates to 5 events that night - presumably that isn't too different from a person without apnea as the app still gives full points for 0.6 events / hour).

If I slept the way I did last night (29 awakenings / roll overs due to shoulder pain) I would feel like total shit today, I know that for sure - and so would whoever I lived with would hear about it. (I get what could easily be interpreted as melodramatic after insomnia, and believe me, they would hear about it).

Anyway, the awakenings to adjust sleeping position appear to have minimal effect on sleep quality compared to airway closing events, which seem to no longer happen. My theory is that a conscious awakening (e.g. to change position) is far less damaging to organs than 80 or more unconscious awakenings where you stop breathing entirely for 10 seconds - I haven't looked that up.

I am getting a little less motivated to diarise this already - which is good - because:

1) I feel like I am sleeping normally, recovering normally, to the extent where I feel I'm sleeping as well as a 30 year old
2) I am not frightened to go to bed anymore. I almost feel as if I could start planning daily events in advance again without fear of either not turning up or turning up in a foul mood
3) I feel like I'm getting through the honeymoon phase with this device and am thinking about it less; I just feel good - even in the morning. I currently consider it as much of a radical improvement to my QoL (Qualify of Life) as I could ever have hoped. If I didn't have the shoulder pain issue, I'd probably feel like a million dollars, but I'll take 100 bucks anytime for now

A couple of lesser notes:
- My nose is still full of gunk every morning, and it is an ordeal getting it out. I ordered a humidifier. I always go to bed with the window wide open (even in Winter) and air con on minimum. I'm not sure if the humidifier will work in those conditions but we will see - I hate sleeping in warm rooms. Regardless, as soon as the nose is full of gunk, there is absolutely no way to go back to sleep without removing the mask, blowing my nose and clearing my throat for 10 minutes, so this problem must be solved.
- For two decades I have taken my thyroid medication (thyroxine/T4 and T3) in the middle of the night, e.g. 2am when I wake up. That's now impossible as it requires removal of the mask to drink or take tablets. I guess I have to take it first thing on waking then fast for 2 hours (it has many food and drug absorption issues, including coffee which significantly +30%/-30% affect its utilisation). Removing the mask is NOT an option as I am 100% awake after fumbling around with that.

Update 1pm:

In the gym, I am feeling a lot stronger and no longer dragging my ass around. Previously I was reaching a feel of fatigue/malaise after about 30 minutes, but 90 minutes in I still felt fresh. I also did some of my other duties without the dreaded lead-leg feeling. I'm back on the computer making some appointments with a mild sense of fatigue and reduction in walking speed which feels about as expected after lifting and ubering around all morning.

It is looking good, however I do note that several studies cite multiple weeks or months to start feeling normal again - hopefully more improvement is still to come. e.g. :

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81% of people with OSA who use CPAP for more than seven hours a night have less daytime sleepiness after three months.[1]

[1] Antic NA, et al. The effect of CPAP in normalising daytime sleepiness, quality of life, and neurocognitive function in patients with moderate to severe OSA. Sleep. 2011; Jan 1;34(1):111–19.

Tuesday, 15 February 2022

Day 7: First rough night with CPAP

On paper, it looks good. I was "asleep" 8 hours 13 minutes. But it was rough as hell, having to get up to piss 5 times despite exactly the same water intake as previous days. Yesterday I bought a humidifier for the device and installed it after RTFM'ing it. It did what is is supposed to do - I have minimal nasal congestion.

But it is going to take a lot of getting used to again. The mask seal kept breaking open - probably 3/4 of the night I was breathing without the CPAP device - I had 5 frigging nocturia (noctural urination) events again, and feel like I'm back to square one. I got up around 2am saying "fuck this" and replaced the mask but much tighter. It was uncomfortably tight but at least the seal didn't break. With the seal on tight, it felt like I was under water. The breathing was so hot and thick, I had to get up yet again to turn the humidifier down from setting 4 to 3, then later to 2.

I'm expecting to feel a bit shit today; I'm a bit gutted as yesterday I was bouncing round the streets with energy and today I would prefer to just stay in bed if I wasn't in so much pain; I will update this later.

I should remember that sleep debt is cumulative, not isolated. I know one bad night of sleep doesn't affect life significantly from my party or coding days where staying up 2 days in a row was never a problem unless you make it one in your head. Others on CPAP forums say they occasionally miss a night without too many side effects so maybe I shouldn't freak out when this happens - everyone has a "bad night" once a week or so anyway, right?

I'll try to stay positive and persist with the humidifier.

Afternoon update: I lifted as normal, then later walked to Sainsburys to get my step count up. Both times I felt "heavy" and kinda "brain foggy". I definitely felt worse than previous days. They often say compliance is the most important part of CPAP therapy and I am inclined to agree.

Wednesday, 16 February 2022

Day 8: Broken sleep, but mask problems improved

Yesterday, the mask stayed on. I had 2 nocturia events, despite not drinking water except to take tablets after 6 pm. I believe these to be associated with normal awakenings vs apnea events.

I set the humidifier to the minimum setting (1 on my device, default is 4) and I have no stuffed nose issues, but breathing is still going to take some getting used to with it. I can't understand why I need the mask so tight with the humidifier on (yet). The back pressure is so forceful if I cough or yawn during the night with the humidifier.

I think I am going to feel fine today, despite tossing and turning all night. My personal feeling is leaning towards a normal awakening to be less damaging than multiple unbeknownst apnea events to sleep quality.

I really tried to sleep on my back, but I have absolutely no idea how people stay like that unless they are blind drunk so, again, I was tossing and turning all night from side to side and the first thing I have to do is foam roll my rotator cuffs.

What I am seeing is (as anticipated): CPAP improves sleep quality, but only for the sleep you can get.

- It obviously doesn't seem to help injury related insomnia
- It isn't helping me maintain anxiety related awakenings
- Still, it is improving the broken sleep that I am able to get

NB. the "7 hours 7 minutes" reported above includes 2 hours 3 minutes of being awake (tossing, turning, adjusting mask, getting up and walking around in frustration etc)

I don't think I'll ever be one of those guys who can sleep straight through the night, anxiety and pain free. My insomnia is too established for that. But, for certain, sleep quality is improving and will hopefully contribute to a significantly higher Quality of Life.

Update (Afternoon): No, I was wrong. I feel like shit today. After writing the above, I kept getting that "crash" where I would need ungodly willpower to do anything but fall on the sofa. I think I fell asleep about 3 times without the device. It could be external factors such as stress or whatever, and I don't want to draw any conclusions from one day, but today is bad with regard to sleep.

Thursday, 17 February 2022

Day 9: Awoken at 2am with anxiety

So, I'm back to my usually insomnia pattern. I don't know exactly what I'm anxious about, it's just when 2 - 3 am comes unless I am absolutely dreading the day (e.g. having to do morning cardio) or outright depressed, my brain just wants to get up and do something.

Sleep apnea CPAP treatment will never help with that. It's in my head. Physically I am exhausted, mentally my brain feels like it needs to be doing something. I don't think CPAP will ever help me with anxiety related inability to maintain sleep.

On the bright side, I went to sleep on my back, had only 2 nocturia events, but as soon as I fell to one side, the mayhem of shoulder pain started, the mask fell off, the light came on, and I said "Fuck lying here anymore" and got up.

This is one of the few times I am hoping I will actually crash and burn this morning; if I do I will retreat to the bedroom with the mask and try to do it that way.

Update: I spent the rest of the morning up until 9am semi-voluntarily falling on the sofa, managing to sleep 20 minutes, rinse, repeat - very rough day.

Intermediate 10 day Conclusion — Friday, 18 February 2022

Day 10: Another night of hell

Woke up too early again after retiring at 9:35pm. The majority of the 5 hours was wide awake - waiting, not sleeping.

It's anxiety and fear and I have lost my confidence in sleep again - I was scared to go to bed because of last night.

Non stop awakening, pissing, tossing, turning - pain from shoulder to shoulder. The mask fell off uncountable times and even became completely disassembled at which point I threw it on the floor in anger and slept without it. I had a stressful event yesterday which would have contributed to anxiety related insomnia - I can't shake things off as easily as I used to.

Sadly, so far, after the honeymoon and excitement period with CPAP, it looks as if:
1) Yes, CPAP will help with sleep quality if you stop breathing during sleep (apnea),
2) It won't do fuck all if you can't stay sleep in the first place due to psychological or physiological issues.

I think I am going to feel like shit today and feel back to square one, but I am going to pretend I am rested and battle it.

Saturday, 19 February 2022

By far the worst nights sleep (if I even went to sleep) since starting CPAP. I don't want to write anything about it. The last 3 days have been living hell again. I have no idea if I am better or worse on these "no-sleep" days as a result of the CPAP.

The anxiety component of my insomnia is a bigger contributor than I hoped.

I'm scared to go to bed again.

This is how sleeping tablet abuse starts - utter frustration and desperation. I must resist.

Back to a world of shit.

Sunday, 20 February 2022

Day 11: Broken sleep — playing catch up

I have nothing to do today, so I was hoping to catch up on the last 3 nights but had broken sleep again last night. Sleep diaries are complicated due to the sheer number of external factors.

I keep waking up spontaneously. Something isn't right. Could be mood, feel a bit down, overtraining - it is impossible to discern.

I sleep for about 45 minutes at a time, wake up wide awake, get up, mull around. Then go back to bed, re-mask, and attempt again.

The flat is a mess, I have no energy or motivation to do anything about it today like previous days.

Around 11am, I made the mistake of sleeping on the sofa without the mask and woke up gasping - I wonder if that problem will actually worsen as a result of CPAP (i.e. increased dependency on it over time).

I'm still not sure if it's the mask discomfort springing me awake, but I don't feel rested at all. I think I may take another day off the gym tomorrow as that would be a big factor excluded from the confusion.

I'm still hoping these past four days were just a blip, because I have felt just as bad as before starting therapy.

Monday, 21 February 2022

Day 12: Early to bed, early to rise, but frequent awakenings

I went to bed at 7pm yesterday. There was no point staying up longer as I was so lethargic from previous nights.

I still don't know why I keep waking up, but it's driving me nuts. It seems to be a combination of pain and anxiety. I am taking my prescribed 40mg propranolol whenever I wake up which helps me return to sleep as it takes the edge off anxiety (I haven't tried that in ages and is better than eating benzos even if it reduces fat loss). I'm mostly anxious because I still can't find a place to live.

I am reasonably confident that I feel a lot better today with the CPAP device vs. previous equivalent days, but I don't have the spring in my step which I had at the start of this journey. As I alluded, it could well have been placebo fuelled excitement. Having said that, I do feel more mobile; I just don't want to be today.

Tuesday, 22 February 2022

Day 13: Late to bed, early to rise

I took two days off the gym. One day stationary, yesterday active rest. I had a hunch that my training was adversely affect my ability to stay asleep. No improvement.

So, that is good that it indicates I am not verging on overreaching. But I still can't explain the nocturnal awakenings (3 nocturia events). I just keep waking up, and it's so hard to return to sleep. I was awake nearly 2 hours of those 6.

I feel shattered but may improve as the day goes on.

It's not even 5am. Ideally I would go back to bed but I will just lie there wide awake, so I won't bother.

Final Conclusion

Sadly, I was unable to conclude this diary at the monthly intervals I originally agreed.

My insomnia is multi factorial and, coupled with being an athlete and natural workaholic, this was not going to work.

So, I continue to use the CPAP machine without fail. I do not like it and it is uncomfortable. I have not yet travelled with it. Sometimes I still narcoleptically (invented word, adj. for narcolepsy) fall asleep on the sofa (i.e. falling asleep against my will) and without the CPAP my ability to sleep naturally seems WORSE: without the machine I have reverted to waking up in a panic and leaping onto the carpet holding my throat thinking I cannot breathe.

Whether the CPAP machine made my ability to sleep without it worse or not, I do not know. I had this problem before but, as I write this, it is magnitudes worse.

The fact remains that I can function on 1 hour sleep per night and have done for the past 45 days. I believe I have SSS (short sleeper syndrome) anyway so I was not a good candidate for this diary. Besides, I am only one point of data anyway. I will always suck at sleeping; whether I have airway obstruction or not, I am constantly writing down ideas by the bedside and I will never lose that habit; in fact, I've recently decided I don't want to lose it. Forget CBT and trying to be "normal", I am who I am.

Update: 12th June 2022 - I learned how to use it

I may be on a lucky streak, but I'm starting to like it now. 1) I changed mask size from L to M. It feels like it doesn't fit, but it stops me waking up with a gap in the seal flapping against my cheek. 2) I may have been slightly hyperthyroid throughout the majority of this journal. Note: I don't usually sleep 9 hours, 6 is now closer to normal; I am a little depressed so am using amitriptyline to make the days shorter. But last night was the best success I've had with CPAP so far.