6:57pm December 16, 2011

I love my bipap.

[This is one of several things that’s been sitting around unfinished in my text editor, that I’ve been trying to get to today.]

True story: A friend’s relatives were in one of those freak car accidents that nobody should survive but everyone did. They’d somehow fallen off a cliff or something, I’m not clear on details. So the guy got out of the car. And the first thing he did was make sure his CPAP machine was safe. Only then did he check to make sure his wife was okay.

I’m a little different than most people I know with sleep apnea because I get plenty of apneas while I’m awake too. Most of those are central (brain-based) apneas but if I get physically relaxed enough I can get obstructive (throat-based) ones too.

(My family has a mouth and throat shape that really disturbs anyone we see for sleep apnea. And most of us are fat on top of that. So right now 4 out of 5 of us have been diagnosed with sleep apnea. With two of us it’s obstructive only as far as I know. The other two of us have neurological conditions that cause central apnea as well – where our brains forget to tell our bodies to breathe.)

So in addition to the standard CPAP or bipap to hold my airway open, my mom and I also have a bunch of really complex crap programmed in that senses when we aren’t breathing and pushes air into our lungs really hard to prompt a breath. And does this harder and harder until it gets a result.

My mom and I both had severe mobility limitations by the time we got diagnosed with severe sleep apnea. We got our bipaps at roughly the same time, and she’d come to visit me shortly after getting hers. She went from barely getting around the house to being able to walk twenty blocks – for fun – in a couple weeks. I went from being in bed all the time except in a powerchair, to being in bed all the time except being able to walk around the house a little bit sometimes (and a powerchair the rest of the time). Not as big a gain but still really damn convenient.

We both also lost weight without trying – apparently prolonged oxygen deprivation does things to the metabolism. Which for sleep apnea can be a vicious cycle – weight gain fucks with the airway which causes weight gain which fucks with the airway. I’m not big on weight loss as a goal in and of itself but since it happened on its own and maybe got me a bit more literal breathing room I’m not complaining.

I’m thinking about this now because my dad – after seeing the changes for me and my mom – finally got himself diagnosed. This is after a lifetime of denial even when my mom taped his snoring and breathing gaps when I was a kid. He’s also in his seventies now and realizing he wants to stick around as long as he can. He’s already lived longer than anyone on his side of the family – all the men die in the 40-65 range from heart problems. We don’t know if that’s from poverty, typical Southern greasy diet, lack of dental or other healthcare, genetics, or what. But it could also be from sleep apnea – which can cause sudden heart trouble like that and kill people. And I’ve been scared ever since my dad hit his sixties, and am so incredibly happy he’s getting treated.

That’s the other thing – people have this weird tendency to hold out against getting treatment even though it’s one of the most treatable conditions out there and usually has an almost magical-feeling good effect on all kinds of aspects of life.

I understand sensory issues with the masks… but oddly enough I now feel less comfortable without the mask than with it. I just had to find one that didn’t trigger my trigeminal neuralgia, then it was just a matter of getting used to it. I know three other autistic CPAP/bipap users and they’ve all had similar experiences: initial discomfort for a few weeks to months and now feel naked at night without it. This won’t be everyone’s experience, and proper mask fitting is key, but it’s surprising what we have gotten used to.

It’s had other good effects for me too. I take epilepsy medications that for some reason make my sleep very thick. Hard to explain. My dreams used to be bizarre and fragmented before the medication. Now they usually have plots, usually like bad sci fi. They’re much less lucid than they used to be and it’s incredibly hard to wake myself up: I’ll just dream of waking up as often as not. And the dreams feel so thick and solid on all levels that I easily mistake them for waking.

So as my undiagnosed sleep apnea became more severe, I began having horrific nightmares. Someone was trying to kill me and no matter where I went, there they were. Killing me in incredibly painful ways. I’d die several times in the same dream. Often of suffocation, strangulation, or being made to breathe something noxious. It turned out this was my body’s way of telling me to wake up or I could die of not breathing. I rarely have those nightmares since using my bipap. I also have stopped waking up with horrendous headaches from lack of oxygen. And I feel better when I’m awake in ways I can’t easily quantify, probably because lacking oxygen just plain sucks.

I’ve known for years that I “forget to breathe” a lot when I’m awake. But I never realized the extent of it until I started wearing my bipap in the daytime sometimes. If I’m breathing fine with just one stable level of air pushed into my throat, then that’s all I get. But if my breathing is absent or too shallow, all of a sudden there’s this WHOOMPHSH thing and my lungs are filling up. That happens a fucking lot when I’m awake and not actively paying attention to breathing. I had no clue how many central apneas I was having during my waking hours. No clue at all.

I’m pissed I avoided the sleep center myself for so long. I had a terrible experience with an asshole technician there. My sensitive hearing easily picked up on this creep in the next room giggling over the sex habits of previous patients with the other technicians all night. He got pissed when I had to get up and pee (took him away from his gossip) so he wrote up in my report that I was demanding personal care from him and could only come to the sleep center with full time staff next time – I had an invalid study so I had to come back. So I avoided the place for years because I couldn’t face that guy again.

I was really upset too. At the time I had undiagnosed and untreated bronchiectasis, a form of COPD/lung damage that is rare in developed countries. (I got it from medical neglect, [snark]yay for the fact we dont have systemized oppression of developmentally disabled people in this country[/snark].) When they had let me try the bipap, my reaction was “OMG I can breathe without horrible amounts of effort, PLEASE LET ME TAKE THIS HOME NOW!!!” At that time, breathing was so difficult I could get tired just from working at it. Luckily I got diagnosed and treated a few months later, and breathe much easier, but I so very much could have used a bipap for that alone. (They now are using bipaps as more effective and less invasive ways to treat certain breathing problems now.)

This past summer I got a truly nasty lung infection that refused to let go. I have a mini pulse oximeter and at one point noticed things were really bad. So I put my bipap on and my reading went from less than 90 to the 97-99 range. One doctor was pissed – “You should have gotten help and let us put you in the ICU. Because if you’d gone off the bipap your oxygen would have dropped again.” (As if the same wouldn’t be true in the ICU?) But my pulmonologist was very pleased and told me to absolutely try that if it happens again, and only call for help if things stayed bad. She also very much approved of my using it while awake when not breathing well in general.

Anyway, I truly do love my bipap. I love putting it on and feeling my lungs actually fill up sufficiently. I love noticing it making me breathe when I didn’t notice I wasn’t breathing. I love not having nightmares every single night and waking up with a splitting headache and the feeling that someone kicked the crap out of my body when I was asleep. I love that when I get too weak to breathe properly on my own I can still breathe without having to go to the hospital. I love actually getting oxygen.

And while I know some sleep centers are run by asshats who don’t keep up with the research(*), and adjusting to sleeping with something on your face can be hard (and for some people impossible or close to it), I’d really seriously way recommend anyone who suspects any form of sleep apnea, who has the resources to do so, to get tested. The benefits of getting treated are usually rather amazing(**), and it tends to extend your lifespan too.

(*) Like the ones who tried putting my mom on oxygen instead of adjusting her CPAP settings. Doing that doesn’t work well if at all – if the air isn’t getting into the person’s lungs no amount of extra oxygen will help.

(**) And unfortunately it can be really dangerous to try to adjust your own CPAP/bipap levels. There are people who try it. But sometimes raising the pressure levels can cause more of some kinds of apnea and not less, so it’s way best to get tested somewhere they can monitor and adjust it.

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