Monday, March 15, 2010

Conquering Obstructive Sleep Apnea

I just had the best night of sleep I have ever had.  At least for as long as I can remember, so basically since childhood.  For the first time in my adult life, I woke up feeling absolutely fantastic, brimming over with energy and relishing the briskness of the morning.

The reason for this breakthrough is that after tangling with the medical bureaucracy on and off since 2007, I finally secured last Thursday a specialized prescription for a heated, humidified CPAP with c-flex and data recording.  I managed to lay hands on the machine Friday, and used it half of Friday night (I was getting over a sinus infection) and then for the entire night last night.

I know that's a lot of jargon to most people, so I'll explain.  Dealing with this situation, I was frequently starved for good information, so now that I have secured it, I want to spread it around and spare others the same frustration.

I have a condition called obstructive sleep apnea.  What this means is that I stop breathing while I am asleep, which forces me to wake up in a gasping, sweating panic.  I weigh 265 pounds; at 72 inches of height, I am supposed to be in the 200-205 range.  The buildup of fat in my body added to the soft tissue in an already genetically narrow airway in the back of my throat.  When I fall asleep and my muscles competely relax, the soft tissue back there occludes the airway.  When sleeping supine (on my back), the occlusion is total, and I wake up after a few seconds, struggling to breathe.  I can sleep on my sides or stomach and the occlusion is only partial.  The result is loud, earth-rending snoring, but I can at least breathe somewhat.  Even then, I receive too little airflow, resulting in hypoxia.  The effect of the hypoxia is that I wake up every day feeling like I am severely hung over, even though I probably drink alcohol only twice or three times a year.

An even more serious effect of the apnea is that constantly waking due to breathing stoppages makes it almost impossible to achieve REM sleep.  A lack of REM sleep gradually erodes mental acuity, memory retention, ability to focus, and general alertness/awareness.  REM sleep is also the phase of sleep during which the body burns the most calories.  According to the sleep studies I had to undergo, I have been getting less than 30 minutes of REM sleep per night, and none at all during some nights, for the past 20 years.  I will touch upon the consequences of this later.

There are two major treatment paths for obstructive sleep apnea, and both are meant to return the sufferer to productive sleep so that the sufferer can return to an ideal body weight and (optimally) have no excess soft tissue occluding the airway.  The two paths are surgery and CPAP.

Surgery to simply cut away some of the soft tissue in my airway would have been a serious step but would have been guaranteed to work, at least in the short term.  The problem was that I would not have lost any other weight, and so it was likely I would simply build up more soft tissue and be back to square one within a few years.  The surgery is most effective on people who are already at their ideal body weight, because they are likely to maintain healthy bodies with clear airways and minimal soft tissue.

CPAP, or continuous positive airway pressure, is a nonsurgical, noninvasive therapy for apnea that has a proven track record of success -- when the patient can tolerate the therapy.  A CPAP machine generates a stream of air that is forced into the patient's airway via a facemask or nose mask.  The continuous pressure maintains airflow through the patient's throat, preventing the soft tissue from closing up the channel.  If the patient is able to breathe and sleep normally, eventually his or her health improves and weight loss follows, reducing the soft tissue in the airway.  Even if weight loss is slow or a patient has a genetically narrow airway like I do, a patient can safely use CPAP for basically any amount of time.  Unfortunately, many patients cannot tolerate the CPAP, as was the case for me at first.  If I had known then what I know now, things might have gone much better.

I wasted literally years seeking treatment for "not being able to sleep," and followed many red herrings and found many dead ends, on the advice of doctors no less.  First it was stress -- but my stressors went away and the problem persisted.  Then it was caffeine intake -- but I abstained from caffeine and the problem persisted.  Then it was suspected somnambulance -- nope.  At last one doc had the prescience to think to treat the snoring problem rather than the sleep problem, and that set us on the right path... eventually.  Anti-snoring masks and straps did not help, and in fact made things much, much worse.  (Stopping breathing AND having my mouth held shut?  Where do I sign up!)  Dieting, even aided by phentermine and such, brought short-term gains, but I could never keep the weight off because I could never maintain the necessary activity level.  Finally, in late 2008, I was referred to a sleep study.

The sleep study was possibly the most frustrating experience to that point.  I was ready to give up and consider more radical solutions -- stomach lap-banding and what have you -- to force drastic weight loss and hopefully make some headway against the snoring.  At my first sleep study, I did not fall asleep at all.  The monitoring apparatus was just that disturbing and uncomfortable.  I forced myself to do it again, and they confirmed for the first time that there were breathing stoppages -- but that was it.  They tested no further.  The doctor prescribed CPAP, and my insurance rented me a machine.

The next few nights, I tried to use the CPAP therapy and found it absolutely intolerable.  The air blasted into my sinuses, drying out my eyes and ears.  I gasped to talk and couldn't get comfortable in the mask.  Worst of all, the machine they gave me had no "ramp" and a poorly implemented auto-adjust, a feature since removed from most high-end CPAP machines, as I would discover.  For all that discomfort, I never made it through a complete night of therapy.

At that point, I gave up.  I returned the CPAP and resolved to find some other solution, possibly even the surgery and I'd just take my chances on a relapse.  Life happened, and I became overwhelmed by other concerns.  (And they were worse than they otherwise would have been, thanks to my constant physical and mental fatigue.)  During an astoundingly busy 2009, I decided I was going to find some way to tolerate that CPAP, whatever it took.

So I did my internet research.  I learned that there were heated, humidified CPAP machines out there that were much easier to tolerate, and that all masks were interoperable so I could shop around until I found one that was comfortable.  I also learned that some CPAP machines "ramp" to make it easier to fall asleep -- they start at a lower pressure and gradually increase it as you drift off.  I even learned of a "c-flex" feature where the CPAP drops the pressure when you breathe out and resumes the pressure when you breathe in.  That was huge!  One of the worst parts of my original CPAP experience was how difficult it was to breathe out (expire).  Because the pressure was so high, I wound up instinctively breathing out through my mouth instead, and as soon as you open your mouth, the CPAP seal is broken and your sinuses are flooded with pressured air, a painful and unpleasant experience.

I figured I could just ask for one of the better CPAPs, so I called the rental company.  No dice, they said -- my prescription had expired.  Oh well.  Could I just buy one, then?  On the internet I saw many vendors who had them for sale outright.  Nope.  It turns out a CPAP is a Class II Medical Device.  Even the internet vendors needed to see an Rx.  So I went to ask my doctor for one, and found out he had left the state and was practicing elsewhere.  Arrrrrgh!

The rest of the story is simple, except that it took six months instead of six minutes because of that stupid prescription status.  I got a new doctor and had another sleep study.  At the sleep center, they fitted the better CPAP right then and there, and I felt like a million bucks when I woke up after less than four hours of therapy.  A solution was within my grasp!  After trying and failing to arrange another rental scenario, I decided to just buy a CPAP, and got my new doctor to write out a prescription so beautiful it makes my eyes tear up just to read it: "CPAP 8cm w/heated humidifier, c-flex, DR, fit mask for comfort."

Here is what that script meant.  The eight centimeters was the basic pressure setting.  Due to the prescription nature of the machine, the vendor sets the pressure internally in advance.  The heated humidifier was a must, sparing my sinuses from the beating they took from the "cold/dry" CPAP I had used before.  C-flex was the nice feature that drops pressure on expiration.  DR is for data recording -- the CPAP monitors its own pressure status and logs it, so I won't have to do a sleep study again.  I can just bring in the memory card to my doctor.  Finally, "fit mask for comfort" meant I could have any mask I wanted.  I wasn't taking any chances on a rental.  I plunked down $700 for a CPAP and mask at a local medical supplies retailer.  I'll try to get insurance reimbursed later -- for now, I wanted to get going.  Think about how adamant you get when you're weary and want to sleep and someone is keeping you up for some inane reason.  Now multiply that by 20 years and you'll have some notion of how accommodating of delays I was feeling.

I had been recovering from ear/sinus infections, so I knew my sinuses would have a hard time acclimating, and thus I only used the CPAP for part of the night Friday and Saturday -- and I still felt great in the mornings.  But last night, I was free and clear to sleep the duration with the therapy in place.  I lay down on my back, neck straight and even on the pillow, mask in place, pressure set, with six hours of quiet approaching... and it was bliss.  I never moved.  I woke up at 5:45, which is apparently a time in the morning now as well as in the afternoon (nobody informed me) and had time to play with Evey, check some computer tasks, and stretch out a bit before hitting the shower and heading in to work... almost half an hour earlier than usual.

It is far too soon to know how successful this therapy will be or what my long-term outlook is, but I have to think my focus, energy level, and therefore my productivity is about to go through the roof.  And that's what brings me to regret all the wasted time and effort for 20 years that this damned condition has cost me.

First, my severe weight gain.  Like I said, I have felt fatigued every day, similar to what you might feel if you had serious jet lag.  Toward the end of the day, my body finally finds some chemical balance, and this is probably why I have been productive as a night owl for some years now.  Now ask yourself how much exercise you would get if you felt like that all the time.  It becomes clear why I have continued to gain weight, amplifying the underlying problem in a vicious cycle.  I might have been healthy and happy years ago if I could have bought a fully-loaded CPAP like the one I have now right off the shelf.

The mental fatigue is by far the more troubling aspect, and I can only begin to guess at what sort of long-term damage I have done to my brain from 20+ years of hypoxia.  When I was a child, I was considered a prodigy and was expected to have a huge future at the cutting edge.  By the time I was 17, I had my nomination to West Point in hand and was merely waiting for the great adventure to begin.  Even when my eyesight kept me out of there at 18, I was accepted in the blink of an eye by the ASU Honors College, and I figured I would just have to charge through the ASU engineering program on my way to my ultimate destiny.  But by the time I was 20, I had failed out of the Honors College and was soon to drop out of community college as well.  Somehow, I had gained a bunch of weight and gotten scatterheaded, unmotivated, and lazy.  Now, I don't doubt that some of that was authentic indecision/angst/sloth, but those factors alone cannot explain how I fell off the rails so abruptly.  Worse yet, I struggled to move forward in classes at which I had once excelled, such as mathematics and the hard sciences.  I just couldn't focus, and I had never had to develop much in the way of academic discipline, so I had no work ethic to fall back on.

I have since learned that this is not an uncommon story for apnea sufferers.  Indeed, I had to have a work ethic beaten into me by life experiences, and once I had the study discipline as a fallback position, I was able to finish law school and pass the bar exam.  I once hated math and science out of regret at my failure to cut the mustard at those disciplines, and now I am rediscovering my love of those things -- my writing is heavily focused in the science fiction genre, and even my whiteboard at work currently features a gallery of fractals.  But the worst thing is that I hated myself, thinking I was just a lazy person, never realizing there was a medical problem underneath it all.  Now that I know the truth, I think the sky is the limit.  I think I will be able to make up huge chunks of lost ground in a very short time.  I just wish so much had not gone to waste in the meanwhile.

In fact, writing this post has me thinking that there might be some meaningful writing to be done on the topic of obstructive sleep apnea itself, and that I might be a good candidate to be doing it.  I will consider this in the days and weeks ahead.

If anyone has any questions whatsoever about apnea, CPAP, or whatever, the comments thread is open and I will try to give helpful answers.

3 comments:

  1. My dad has suffered from sleep apnea for about 30 years.

    It was very enlightening to read this from your perspective, as he has had a CPAP for about 10 years. It was like I got my dad back again after he had been on the device for about 3 months.

    He is still struggling with weight issues due to Thyroid history and stress levels, but at least it is not exacerbated any more due to lack of sleep.

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  2. Sweetie, I'm so glad that this has helped you! I'm also glad that the machine is SO MUCH QUIETER than your snoring!
    :-)

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  3. Amy,

    Glad to hear it helped your dad too. CPAP as a therapy is only successful for around two people out of five, and yet it is still currently the best thing going for apnea treatment (which is a real eye-opener at how marginalized sleep disorders are in the medical community). I wish him the best of luck with the thyroid and stress issues, as those are no picnic either!

    Steph,

    I can always run a diesel generator by the side of the bed if you get nostalgic for the seismic-grade noise! :)

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