The Deadly Reality Of Living With Sleep Apnea

“You need to get out,” she said. I could tell she was serious.

I always had a bit of a snoring problem, but in the five years we had been married, my wife had come to a breaking point. It was just too much. Not only was I snoring loudly enough to keep her awake, (she’s convinced the volume could have attracted extra-terrestrial intelligence), but I was – apparently – periodically gasping for air. Loudly. Desperately.

That isn’t normal.

Sleep apnea image via Shutterstock

She lovingly kicked me out. Our son was only two months old, so having a gasping creature in the bed alongside a regularly waking infant doesn’t help. I was banished to my office, where the trundle bed slowly dug its crooked and jagged supports into my back. Truthfully, as I lay there alone, I knew there was a problem. A pretty serious one.

I had been falling asleep at work. During an important meeting with several key leaders, I drifted off for what only seemed like a second or two. How long had I been asleep? Did anyone notice? Oh god, did I snore during a meeting? I’ve always been one of those “tired” people. But I chalked it up to lifestyle. Hey, I work 50 hour weeks. I do a lot of extra stuff outside work. I have a baby!

But this was different. I couldn’t make it to 2pm without having to actively fight off sleep. I was making small, stupid mistakes that could have been avoided. Mistakes that surprised me. So I lay there, in the trundle bed, in the dark, my feet hanging over the edge. And I decided to get something done.

Sleep Apnea Is A Big Deal

It’s a really big f**king deal.

This isn’t just about getting enough sleep. Or waking up a frustrated wife. Sleep apnea, when left untreated, is life threatening. High blood pressure, heart irregularities, headaches and memory problems are the lightest of the consequences. Higher risk of heart attacks and strokes come after that. It gets worse.

Recent research suggests untreated sleep apnea in elderly people is associated with accelerated cognitive decline by a factor of 10 years. “Among older people who developed mild cognitive impairment or Alzheimer’s disease, those with untreated obstructed sleep breathing began to experience mental loss at an average age of 77, compared to age 90 for those without breathing problems.”

Then there are the simple risks of just being tired all the time. There’s a reason people are told not to operate heavy equipment or drive while tired – 20% of deadly road accidents involve fatigue. Sleep deprivation is used to torture people. The worst part? One in four men over the age of 30 have some degree of sleep apnea.

I didn’t know that before I went to get diagnosed. I wish I had. Maybe I would have gone sooner.

Sleep Apnea Is A Big F**king Deal

My father was diagnosed with sleep apnea during his 40s. He was a hard worker – still is – and usually blamed that for his tiredness. He’s the type of guy who, when he does something, loves to do it right the first time. He’s thorough. So of course, he’s going to be tired. Growing up I began to associate tiredness with accomplishment. If you’re tired at the end of the day, you know you’ve done something right.

But it gradually became apparent normal people don’t fall asleep so much during the middle of the day. Normal people don’t fall asleep during church -- well, maybe scratch that last one. I told this to the young sleep specialist across from me as he considered my condition. Sleep apnea can be hereditary, he said. Combined with the noises my wife was wearing and my own personal experiences of tiredness, it was likely I had sleep apnea.

Getting diagnosed is a process with many steps. First up is a test used to diagnose how many “events” I experience during the night. (How many times I stop breathing). There are multiple ways this can happen, but ultimately the back of your throat – the soft palate – is blocking your airway. Your body is literally stopping you from breathing – until the brain kicks in before you die. Hence the gasping. The real danger is that sleep apnea stops your natural sleep cycle.

There are four stages of sleep. The ultimate goal is to experience a flow through the stages, concluding in REM sleep – that’s when you dream - before cycling back again. Each cycle has you experience progressively longer amounts of REM sleep – that’s when you dream. Babies spend 50% of their sleep in REM, compared to only 20% for adults. I wasn’t really thinking about this as I was getting wired up for my home sleep test. It’s a complicated test.

The doctor swaps you with a special glue and attaches pads to your skin for various wires – on your head, your chest, stomach and thighs. A piece of wire with an attachment fit under my nose. It was a little awkward.

All the wires connect to a box which transmits the data to a computer at the clinic. I was explicitly told to make sure everything stays on. If anything came off during the night, I would have to get wired up and do the test again. As I left the clinic, I looked like some sort of awkward robotic experiment gone wrong.

I drove through McDonald’s just to freak people out on the way home. My wife laughed at me. I looked ridiculous. Then I went to sleep. On that little trundle bed in my office. Alone.

"We Need To Get You Started On Treatment Straight Away"

As I walked into the doctor’s office, I could tell something was a little off. He was nice enough, but curt. Not rude. Serious.

I sat down. He went through the spiel – reviewing what the process was, how they measured how many times I actually stopped breathing during every hour. Up to about five events would be considered normal. Between five and 15 is mild. Moderate is anywhere from 15 to 30. You definitely need to address the issue in this range. Severe is anything above 30. I knew my father’s diagnosis was severe, and his was around 70 events per hour.

“So, what did I get?” I asked the doctor. I think I was grinning like an idiot. Like this was some sort of game. He took a pause.

114. I stopped breathing 114 times every hour. That’s nearly twice a minute.

He showed me the chart. Not only did I not even dip into REM sleep, I wasn’t even reaching stage four. My body was not regenerating as it should have been. I could tell in his eyes – still and narrowed – that he had no time for hyperbole. “I legitimately do not know how you are awake right now.”

He went on to say that not only was I at risk of a heart attack or a stroke, if left untreated, this severe sleep apnea would make either or both events likely by the time I reach 40. I immediately thought of my son. “We need to get you started on treatment right away.”

A Few Different Ways To Treat Sleep Apnea

Contrary to what you might think, being overweight exacerbates sleep apnea, but losing weight won’t stop it. I wasn’t exactly obese, but I was overweight. I could lose some, the doctor said, but ultimately, it won’t stop anything. You can elect for surgery to remove your tonsils. This is the worst option said. It’s expensive, invasive, and there’s no guarantee it could actually work.

No thanks. The third method is the most popular. And, I was surprised to learn, it’s 100% effective. CPAP. Continuous Positive Airway Pressure.

CPAP therapy involves wearing a mask, connected to an electronic pump, every night when you go to sleep. For the rest of your life. The air basically pushes your throat open and forces air down your neck Not only should I do that, the doctor said. But I should go to the CPAP retailer and buy a machine in the next few days. Preferably that day. And start using it.

Oh, and by the way, he said. My sleep apnea was so severe that I couldn’t just use a nasal mask, which is what some CPAP machines have. I’d have to use a full face mask. I suddenly realised the impact of what this diagnosis meant. I would be reliant on a machine to not only sleep properly, but to regulate my health. Forever.

Imagine what you do before you go to sleep. You snuggle up in the covers, get comfortable, and drift off. Not me. I have to slip my mask on. Make sure the hose is connected properly. And then sleep on my side or back. Never my stomach – the mask doesn’t work that way. Whenever I travel, I have to keep my CPAP machine with me. Forever.

The Science Is More Robust Than It Used To Be

Even 10 years ago, CPAP machines were fairly basic. You’d just have them set to the pressure you need to sleep properly, (I had to take a second sleep test in order to figure this out), slip on the mask, and away you go. The connected device boom has changed that. Now, CPAP machines are digital, robust and able to track more information than ever.

A lot of the old machines couldn’t retain data on whether they were actually working or not. You could use them, sure, but there was no way to track their effectiveness. Was the right pressure actually working in reducing the number of apnea events per hour? Was there air leaking somewhere? You just don’t know.

I use the Resmed Elite 10, which tracks statistics like how many apnea events occur per hour, whether my mask is leaking, whether the seal of the mask is actually tight, and how many hours it was used. The device contains a mobile connection which uploads all of this data to a server, which is then provided to me through an online “MyAir” account.

Every day, I get a report showing all of these statistics, tallied into a score out of 100. The higher the score, the better quality of sleep. My doctor can access these statistics at any time. I got an email last week telling me that my air leakage was a little high – I should probably check to make sure nothing broke.

As far as perpetual treatment goes, this is pretty easy. The only hard part is the mask itself. The doctor told me some people don’t like using the mask, so they take it off. They don’t use it. Don’t do that, he said. Your life is at risk – you’re lucky you caught it at 27 years old. This isn’t a complicated issue. CPAP therapy is 100% effective.

Just use the mask, he said. You’ll be fine.

I Don't Exactly Remember What I Felt The First Night

But I remember how I felt the next morning. There are moments in life when you suddenly discover a new horizon. Things you never thought were possible. Like those videos on YouTube where you see people switch on a hearing aid for the first time and listen to music. Or people who have corrective eye surgery and can finally see the face of a loved one. It’s literally a new world.

Before CPAP, I didn’t know what it was like to be awake. But the first day after using the machine, I was a new man. I had never felt more invigorated. My eyes weren’t hanging, begging me to close them. I had the mental capacity to have longer conversations. I’m an early bird. I love getting up at 6am. The first day I woke and felt like I could run a marathon. And I’m not exactly fit. I worked a 10 hour day and felt like I could go for a long run. My productivity improved. I could work long meetings without feeling the need to nod off.

Is this what normal people feel like? I was awake. I was alive.

A Lot Of People Complain About Being Tired

I meet a lot of people who often complain about snoring, or being tired. Sometimes I recommend they see a sleep specialist or take a test. Maybe they could benefit from CPAP therapy. “Nah, I don’t want to wear a mask,” they might say. “Yeah, maybe I should.” “Can’t be bothered.” Snoring is a part of life. We deal with it. We’re adults. We’re tired because we’re busy and god damn it, we’re important.

But you’re not just dealing with your lack of sleep, here. You’re dealing with your life. Your heart can only sustain so much strain for so long. By the time you hit 40 years old, that snoring could be putting you at risk of a heart attack. Like any type of activity required to improve your life, you need a little bit of short-term effort for long-term gain. It’s an effort to remember to use CPAP every night. To take it with me while travelling. And I still get tired. We all get tired. But when I’m tired, I know that it’s not my body’s way of crying for help – my heart isn’t straining to pump blood through my lungs.

I feel alive. More than I’ve ever felt.

When my son wakes up in, my wife usually brings him into bed with us. Especially if it’s too early for her to get up just yet – she loves her sleep. Shortly after I began CPAP therapy, I woke one morning to find my son moving the hose connected to my mask around like a joystick. He was laughing to himself. I took my mask off and lifted him in the air. He giggled uncontrollably. We went to the living room to play.

My eyes were open.

I was awake to enjoy it.

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    +1 for getting it looked into. A CPAP has transformed how (not) sleepy I feel in the day now.
    And you can get some cool stats to look at too.

    I woke myself up a few times feeling like I was choking, so I got myself tested. I remember the first morning after being on CPAP. I sat in my car, looked out at the world, and said "wow!". I was ... oxygenated, and light sensitive and tingling in a nice way. It settles down fairly quickly, you don't get that every day. Another thing that changed, and it might just be me, is that my morning pee went from a very pale green to a nice yellow, a sign I think of a much better constitution. And the night sleep is so deep, it is like an off switch and I'm not really aware of any time passing, although I do dream from time to time which I like too. If you are on the fence about this, I encourage you to at least get tested to see how bad you might be....

      This article was good to read. I got excited at the end when he was talking of his results. Good on him!

      I snore a bit, but my partner says it only really happens if I roll over on my back.
      I never wake myself up snoring, but my partner needs to nudge me and tell me to roll over occasionally.

      I wouldn't say I'm tired throughout the day though, reckon it'd be worth getting a look?

        I'm scheduled for surgery next week to get nasal polups removed, straighten my nasal canal and hopefully clear up my sinus sacks (I currently have little to none in the way of sinus sack (what ever they are called). The ENT recons this should stop me from snoring a bit and help get more oxygen into my lungs during sleep. If this doesn't work, I'll be on a CPAP soon enough but hopefully this goes well!

        If concerned, always get it checked out, we have a decent base level of medical care here and the ENT inspection was only about $120 out of pocket after medicare.

          Good luck red candle. I'm in next month for nose realignment and the sinus bits cut off.

          I had the same op including straightening my septum back in October, the operation itself was incredibly pain free although I stayed in overnight for observation due to the sleep apnoea. I seemingly have very narrow nasal passages though. It has helped with the snoring however my left nostril does feel a little odd. Get ready for some major clots coming out of your nose a few days after, very satisfying to get them out but Im talking 15cm long strands of thick red hanging from your nose.
          During my initial sleep study I had LOTS of events per hour, cant recall exactly but it was huge. However I do feel the test itself is partly to blame for this, I was in an air conditioned room, wired up and difficult to sleep in normal position so spent a lot of time on my back I think.
          One good thing is the followup consults with the ENT were bulk billed, so it was just my initial consult I was charged for. Given I was in a high dependency bed for a night at hospital I would hate to think what that would have cost me without medicare.
          Good luck with the op.

        Definitely worth doing a sleep trial. All the chemist near me are all over this as a revenue stream, which is how I really knew about it, so I did my local chemist's take home sleep trial. I think it was $100. You wear a few simple things on your body, nothing too invasive and go back to download the results. Mine were 35 obstructive apneas an hour, now it's down to a few or nothing.

    Great article, I'm currently in my fourth and last week of hiring a CPAP machine to test.

    I had a nasty series of accidents and fractured 9 vertebrae over the course of 6 months (and broke more bones) two years ago. I spent a long time lying down flat in a hospital, then in bed not moving at home, like over a year. I went from 64kg to about 110kg in just over a year (like an almost impossible amount) and began snoring for the first time in my life. Snoring incredibly loudly, and choking. I moved myself to the spare bedroom to give my wife back her sleep, but without A/C and a terrible bed, it didn't last long. The CPAP machine is AMAZING. I'm lucky that I can get away with wearing just the nasal mask, and even though it's a real pain to add to the sleep routine, waking up feeling rested and not crashing in the afternoon is worth a lot. I slept terribly even when I was very skinny and didn't snore loud, but I probably had apneas then too, just never measured.

    I'm going to buy one in the next couple of weeks, does anyone have any good suggestions besides what's mentioned in the article? As a geek I keep thinking about how it could be better. Anyone have any good tips on sleeping with the tubes all up in your business, or any other random tips after living with one for a while?

    Last edited 08/01/16 6:10 pm

    Another option is wearing a special mouthguard that pushes your lower jaw forward whilst you sleep. This is for people with less severe apnoea... like myself. Waking up to 30 times an hour. 35, fit as a fiddle... Been snoring only for the last 5 years. Was interesting finding out that every dentist and their dog has come up with a patented mouthguard that is the "latest and greatest". Don't get sucked in by marketing, go see a specialist ENT and/or orthodontist. Do a sleep study. My grandfather snored the house down and died young of a heart attack... they didn't have these options back then...

      So possibility that I could get off my cpap mask? Don't get me wrong, by now I'm used to it, but the idea is enticing at the least. Heck, I'm so obsessed with cpap masks and sleep apnea I just started my own site. I might as well try to help and make a dollar here and there if i'm going to talk about it so much anyway. lol
      It is new and work in progress so don't laugh. :)

        Absolutely. But it depends how severe your apnoea is and the cause of it. I'm on a mouth guard rather than a cpap. Mouth guards are incredibly effective! Definitely worth looking into, but get professional advice :)

    Yes you should get a test. I got a sleep apnea test. Have 'positional sleep apnea' which means I have severe apnea on my back, and little to no apnea on my sides or front. I slept 50% on my back which means half the sleep is shit. I used a tennis ball strapped to my back to keep me off it but now use 'nightshift' which works better. Good luck

    I am 24, and have been using a CPAP for about 5 years now. A combination of being overweight, a severe overbite, and abnormally small sinuses for someone of my size (6") meant that, even as a kid, I was a terrible snorer. When I was about 12 my parents even had my adenoids cauterised, to no effect. I finally decided to just simply go for a sleep study when I was about 19, and lo and behold, it turns out all that snoring was sleep apnoea. I suffered from nearly 160 events an hour, and they got me started on a CPAP straight away. Ever since then, it's been embarrassing yeah, and sleeping on a plane or while camping is a bitch, but I sleep solidly. All through school, and especially high school, I suffered from falling asleep in class, and as a result my grades *severely* suffered, my attitude went really sour, and towards the end the combination of all of that lead to pretty bad depression. When I drove, I could barely stay awake, which is obviously really dangerous. Often I would just collapse. It wasn't uncommon for me to be lying on my bed talking to people with my laptop, when all of a sudden I'd ........................................................................................................... - you get my point. I had never heard of sleep apnoea until I actually saw a doctor about it, and he recommended a sleep study. After the study, everything became so clear, it was like an epiphany.

    I can definitely recommend sleep studies to anybody of any age, even if you just suspect you might be overtired. They only cost about a hundred bucks thanks to medicare, and it could just end up giving you what you need to sleep well.

    Last edited 09/01/16 2:37 am

    I've been using a pillow nasal mask ordered from the States a few weeks ago. It's the best CPAP mask I have tried to date (having tried full face and the masks that just cover you nose). The full face mask used to leak to buggery and was too big. The nasal cover mask used to cause my nose to itch. With this nasal pillow mask, I can sleep on my back, sides and on my stomach if I want. No problem.

    I feel I should add that the prices of CPAP machines and accessories have been way over the top. The people who retail CPAP machines charge like b******s and have no empathy if you are poor. I was lucky enough to get my fisher and paykal machine from the States before importing them was banned. Shame on you greedy aussie CPAP retailers!

    Don't get an old machine because it is cheap. Chances are, it will be very noisy and you don't really want to breath from a machine that someone else has used. Well, I wouldn't.

    Last edited 09/01/16 11:09 pm

      Whats the story on banned imports? Classed as unapproved medical equipment or something?

        I don't know. It is as if the Australian retailers have used the ban so that they can charge much much more for the same machines as the Americans pay for theirs. Who knows how much the machines will cost in Australia now with the drop in the Aussie dollar. The whole thing stinks. There must be so many people out there who knowingly and unknownly suffer from Apnea, yet the Australian retailers can charge such inflated prices for their imports.

          Or it could be the same reason that a phone charger might cost you forty dollars here, but five dollars in China: because the cheap knock-off ones don't meet Australian safety standards in terms of material and construction and end up literally killing people.

          Having high safety standards means that things cost more.

            Things that cost more can also mean that some people who cant afford them actually end up going without. Catch22 situation in some ways, but I think that some people would rather have access to a lower quality device that they can afford rather than a higher quality more expensive device that they cant, as long as it complies to electrical safety standards and doesn't strangle you in the night that is.

        In the US you need a prescription to buy CPAP equipment. I have patients who buy their equipment from US websites but they need an up to date prescription from us to do so.

      Woah ease up mate.
      "Shame on you greedy aussie CPAP retailers!"
      As one of these "greedy" CPAP suppliers, I'll have you know I can't buy the units for more than double what the guys in the US are selling them for.
      So don't criticise us, It's the manufactures and the economy of scale that the US retailers have that allow them to buy and sell so cheaply.

        I think you mean "cant buy the units for LESS than double" ??

        As a seller here in Australia, what is preventing you from buying from the US sellers at retail price if its still cheaper than what you are able to purchase them at wholesale for from other sources? Is there an issue with the US models being not approved or not suitable for our voltage here in Oz?

          The US models are not approved for sale in Australia as they have not passed TGA approval. This means I can't (by law) import a machine and on sell it. The US models also are not made to as high standards as those for sale here. e.g. Aluminium chamber bases as opposed to stainless steel. You also then have issues with warranties as most manufactures have country of purchase warranties only.
          This is all driven by the US health insurance model.
          It's frustrating when I see a machine, made in Australia, being sold in the US for less than $500 USD that costs me over $1600 AUD to buy!

          Last edited 11/01/16 5:11 pm

      What is the name of the nasal pillow? Do they do full face masks? Not happy with my current full face mask as it leaks so badly.

        There are high quality retailers in all major cities and regional centres. If you are not happy with your current mask it is worthwhile visiting for a mask fitting with a professional and renting before purchasing anything :)

    Great article :)

    As someone who works with people who use CPAP I want to add that the severity of your sleep apnoea does not determine what type of mask you need. Mask choice is determined by what seals well and is comfortable. Masks that cover your nose and mouth are needed when people can't breathe through their nose, or when they leak air out of their mouths when using nose only masks (commonly identified by having a dry mouth in the morning, and commonly first treated by trialling a good quality chinstrap with the nasal mask). Most people are fine with nose only masks and can sleep in all positions.

    I knew I needed CPAP, but I had a terrible time getting used to it. I had two separate tests and didn't sleep for even a minute during them because of the positive pressure against exhalations. I had tried the machines and found them "impossible" to get used to. wife and I went traveling to Singapore. We had been up for over 28 hours. We finally registered into the hotel. I had a panic attack. I was beyond exhausted. We had been carrying our luggage all over the airport and the ship that we were supposed to be on didn't leave until next morning.

    The air conditioner was blaring on me. I didn't know whether I would continue breathing when I went to sleep. I raised myself on three pillows and "debated" whether to alert my wife that she might be awakening to a corpse in the bed next to her.

    Eventually I went to sleep. But I awoke exhausted and still badly frightened. I resolved to GET USED to CPAP even if it "killed me" in the process.

    But I didn't know that the technology was vastly improved and that the NEW machines used decreased pressure on a computerized algorithm program.

    I had another sleep test and still didn't think I'd slept. But I actually got about 4 hours. I got the new machine with the new technology and within a week I was up to 4.5 hours of sleep every night. My AHI's are now between 2-4.5. I feel wonderful. (Under 5 is considered "normal." )

    Note to dis-believers: The NEW technology of the VPAP machines is nothing like the old systems. You CAN get used to this. If I did, anyone can.

    sanjosemike (Parenthetically I am a retired physician, but I am also a patient, just like you are)

    2 points to discuss. I have sever sleep apnea, (78 times an hour) from puberty on, based on physiology; barrel chested, short neck, wide shoulders. When I weighed 160 lbs, I shook the house; my Dad, a slim and trim WW II vet, was the same. My doc said I was sleep deprived from puberty on.

    Point 1: I was married 20 years ago, so effectively, my wife has had sleep apnea (through me) for 20 years. She is now having much better sleeps, and out life together, while always good, is much better now. She *greatly* appreciates the efforts I do so we *both* can sleep well.

    Point 2: The way to have guys wear the mask is to focus on their work performance efficiency. I tell them that mild sleep apnea can reduce their work performance by 10+%, moderate by 20+ %, and sever by 30+ %. I know these are not scientific numbers, but there is some truth in the numbers. They are more likely to persevere wearing a mask when they realize the effect sleep apnea has on their work.

    Im glad to hear that the cpap treatment/machine works for you but just so you know (and other readers)- the cpap machine/treatment is NOT 100% effective- success rate is very high but some takes weeks or month to have any positive effect and for some it does not work at all.

    Couldn't make it to work with out falling asleep. Feel asleep at work multiple times holding blades and patient specimens. Feel asleep with my car off in the heat. I had no idea sleep apnea could cause this. Provigil worked at first. There were issues getting my machine approved by insurance. I couldn't work. I became so desperate I tried nicotine for energy and overdosed. I was okay, threw up and had swollen eyes. I thought over weight old people got sleep apnea. I was wrong. Doctor thought I was narcoleptic. I also thought I slept great every night. Good thing my wife could hear me chocking. I wanted to make people aware how bad this disorder can be.

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