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In previous entries, I’ve talked about my initial adventure with sleep apnea and my subsequent sleep study. The gist of those entries is that I was diagnosed with “severe” obstructive sleep apnea, with an AHI (Apnea-Hypopnea Index) of 48. This number means I had an average of 48 sleep interruption “events” per hour — these events range from blood-oxygen desaturation to a complete closure of the airway. There are lots of people out there with worse cases than mine (including readers of this blog!), so I took some comfort that my case seemed pretty typical — there was every indication that I could be treated.
In my daily life, particularly in the last few years, I’ve been a very sleepy person. I’ve generally existed in a sort of brain fog, muddling my way through each day until I could collapse for a longish night’s sleep (10+ hours) that, sadly, didn’t seem to refresh me. Of course, now I realize that during all that sleep, I was having these constant breathing interruptions, which caused my blood pressure to increase, and severely impaired my ability to experience the restorative effects of sleep. It’s strange to think that sleeping doesn’t lead to restfulness, but it certainly explained why I just seemed to feel worse as the months dragged on. After going through a sleep study, my doctor reviewed the results, told me about my AHI and various other fascinating acronyms, and finally prescribed a CPAP machine — a device that blows air up my nose, effectively stenting open my airway with air pressure. The idea is to prevent the airway from closing, and thus get that AHI number down — so the patient has uninterrupted sleep.
Getting the CPAP machine was an adventure. My prescription was sent to a medical device sales company in my area. That company called me one night and set up an appointment for me to come over (they’re “down by the airport”) and get fitted for my new sleep gear. My appointment was set for 5pm on a Thursday, and I’d be part of a “class” of people all getting their machines at the same time.
I was the youngest person in my class by about twenty-five years (I’m 30; the oldest person there was pushing 80). Everyone was given a CPAP machine, though they differed quite a bit based on prescription. Mine was a REMstar® Auto M Series, with a heated humidifier attachment. (Pretty sweet, huh?) Without going into all the specifics, the CPAP machine is programmed with various information from my prescription (specific air pressure ranges), and it does some amazing things — for example, it is able to detect apnea/hypopnea events and records them internally. It also records the specific air pressure used at all times, and builds an internal log of the entire therapy process. This information goes on a smart card which is later sent back to the medical services company, who work with doctors to analyze it, graph it on a computer, and make sure everything’s copacetic. In addition to the machine itself, I was given (okay, sold) a six-foot length of air tubing (about 1″ in diameter) and a mask that attached to my nose to actually deliver the air into my respiratory system.
The mask is a whole story of its own. While the CPAP machine’s usage is pretty straightforward for the patient — you press one button and it starts blowing — there’s all kinds of stuff you can do with different mask styles. Masks need to be fitted, adjusted, and regularly cleaned, and there are many opinions about which masks are best for various situations (though the global advice is just to get something that “works for you”). My doctor had recommended a “nasal pillow” mask for me based on my dislike of the over-the-nose cup used in my sleep study. I didn’t like the cup because the straps to keep it on were super tight, the cup irritated the bridge of my nose, and it leaked a lot of air, blowing continuous blasts of air into my eyes all night. In contrast, the nasal pillows are sort of like little nose plugs — they stick directly into your nostrils, and deliver air through a big hole in the middle of the “pillows.” The amount of headgear touching skin with this mask is far less than with a cup style mask, and I liked that idea. I ended up with a ResMed™ Swift LT mask (better pictures here). It’s much less invasive than the nose cup, but my doctor had warned me that nasal pillows freaked some people out — the issue being that using this mask involves closing your mouth, sticking something very like nose plugs up your nose, and then trying to go to sleep. Your brain isn’t used to this situation (mouth and nose both covered), and rebels, thinking that you’re being suffocated despite the tons of air pumping through the system. Also, the nasal pillows concentrate the air flow into nostril-sized holes, so the pressure feels higher than when using a nose cup or other large-area mask. It took a conscious effort for me to relax past the suffocation panic and let the system work, but I liked the idea of the nasal pillows since I’m a side-sleeper, and I felt that less headgear was better.
So I had the gear: CPAP machine, air hose, and mask. The class instructor told us various stuff about how to use it, particularly recommending the “ramp” feature on the machine, which starts off blowing air at a low pressure, then ramps up to full pressure over the course of a half hour. My machine happens to have a “flex” function which automatically decreases the air pressure when I exhale, which increases comfort. The instructor also recommended that we disassemble everything — mask, hoses, humidifier attchment, air filter — and clean it every day. This isn’t a ton of work, but it’s far more infrastructure than most people are used to just to go to sleep and wake up in the morning. But I dutifully listened, and even bought a gallon of distilled water for the humidifier on my trip home. (You have to use the distilled stuff, or minerals build up in the machine. Given the expense of the machine, I listened.)
I set up all the equipment, put on the mask, and started the flow. Within thirty seconds I ripped off the mask and was gasping for breath. My brain was screaming — suffocation! — and somehow it seemed much worse at home lying in bed than in the class. I chilled out for a while and tried again, but still the sensation was too intense. I switched to the nose cup mask I had disliked in my sleep study (they gave it to me to hang onto), and that was a lot easier to handle. So on my first night, I slept with the nose cup (plus an Ambien) and it was…tolerable. Except for the rain-out.
Rain-out is a phenomenon where water condenses inside the mask and air tubing, because the air in there is warmer and moister than the air in the room. This was certainly true in my room, which was probably at 60 degrees F, and I was using a heated humidifier on the CPAP machine. The result was water condensing in the mask and literally raining on my nose (and sometimes up my nose). No fun. There are many potential solutions to this problem, but so far what I’ve done is simply warm up the room and reduce the heat on the humidifier — there’s still a little condensation, but not enough to bother me. Aside from the rain-out, the other problem is just getting used to having something strapped to your head all night. This is genuinely weird, and takes some getting used to. A final issue is the restricted range of motion you have when you’re attached to a mask and air hose — rolling over in bed requires a little planning, and I had to reconfigure my pillow setup. (But frankly, as a geek, this was kind of fun.)
In subsequent nights, I switched back to the nasal pillow mask. Although it was hard to get past the suffocation reflex, I just kinda powered through it. Now that problem is mostly gone, and I’m able to get past the freakout sensation with a minute or two of calm breathing. I like the nasal pillow mask far better than the nose cup — it’s more comfortable, it’s smaller, and overall it just feels like a better fit. So I’m happy. I must say that getting used to CPAP is genuinely challenging — I can see why some people give up. There’s a lot of gear and maintenance involved, and you have to change your sleep routine permanently. But in my case, the daytime sleepiness had just gotten too bad — there was no way I was not going to use CPAP. I needed a change, and CPAP was going to give it to me, if I put in the work.
So what’s my progress? In my first two weeks on CPAP, my AHI has gone from 48 to 0.7. So I’m still having the occasional sleep-interrupting event, but vastly fewer than before. I’m also routinely sleeping through the night, whereas before I would wake up repeatedly (up to ten times a night), and often got up to visit the bathroom. This is just gone — my body no longer seems to feel the need to dump liquids at night. I no longer wake up thirsty; there’s no real need anymore for a glass of water by the bed, which is a big change. My blood pressure has gone down. I’m losing weight. I’m also dreaming much more, and the dreams are intense and memorable. I’m still sleeping 10+ hours a night, which seems like a lot, but maybe I’m paying down a sleep debt? I’ll have to ask my sleep doctor. The best part is I’m more wakeful during the day. The wakefulness isn’t perfect — there’s no miracle here — but it’s clearly a lot better than before, and the fog is clearing. I’ll see my doctor next week, and we’ll review the machine setup and the data, to see how things are going.
So my overall experience with my sleep apnea diagnosis has been positive. It’s frankly a lot of work to go to a sleep doctor, fill out forms, go get a sleep study, figure out how to sleep during it, go back for more review and testing, get the machine and mask, set it all up, maintain it, and use it — but the upside is enormous. And the potential downside (leaving it untreated and never being properly rested) is horrible. So I’m sticking with it. For those who haven’t yet been diagnosed, I encourage you to be persistent — you have to be your own advocate within the medical system. But there are many people who have gone before, and have shared their experiences online.
Please share your experiences in the comments. I’ve already heard from many readers with sleep apnea, and I’ve been very encouraged by your stories! Thank you. Also, I found the forums at cpaptalk.com encouraging and enlightening — many of those folks have Gone Pro with their sleep apnea, buying special software and hardware to monitor their CPAP data. It’s inspiring — and this CPAP machine gives me a new thing to geek out on! The community over there has answers for pretty much any question, and it’s a great resource.
Comments (19)
Comment
My daughter has hated to sleep since day one thus I average about 5 hours a night sleep. Funny thing is that over the past year and a half, I’ve actually adapted and don’t suffer from sleepiness.
posted by Marty on 10-17-2008 at 3:02 pm
thanks for the info — i may have to get one of these eventually, and this gives me a good idea of what i’d be in for…
posted by heather on 10-17-2008 at 3:21 pm
I had the exact same machine! They sell a swivel adapter (about $10) for the machine end of the hose. That makes turning your head or rolling over not such a hassle. It’s totally worth it.
posted by qt314159265 on 10-17-2008 at 4:07 pm
I’ve had a CPAP for 4 years now, and I’m 27 years old.
For years I would sleep for 10-12 hours a day and still be tired all the time. I missed classes because of it left and right.
Having the machine has made my life a million times better. The only downside is that you’ll really have to wear it every single day for the rest of your life. Cuts down on the “sleepovers” quite a bit, if you catch my drift.
I still plan on getting surgery for my condition because I’m not prepared to wear the mask for the next sixty (I hope!) years. But it has worked wonders and I’d probably a lot less healthy and happy without it.
posted by Andy on 10-17-2008 at 4:16 pm
cpapman.com was recommended to me by my medical supply company – it’s ugly, but they seem to have it all.
posted by M_Hagen on 10-17-2008 at 4:17 pm
Have you looked into the Pillar system? My daughter-in-law just could not handle the CPAP machine and it is not conducive to intimacy. The Pillar system insert flexible plastic rods in the soft pallet – an in office procedure…she is quite pleased with the result, as is my son….he gets some sleep now.
posted by Mrs B on 10-17-2008 at 4:20 pm
I’ve used CPAP since spring of 2005. It’s been a struggle. My machine does not vary pressure or log data; I set my own pressure and my humidifier temp. It seems seasonal changes of barometric pressure, humidity, and temperature all tend to vary in weird combinations, resulting in dry mouth or rain-out. In June I went to a new dentist, for routine work. I mentioned my apnea and mentioned how my pulmonologist had told about a dental appliance that helped. He said he had fitted his own father with one, along with dozens of others. The appliance, called snor-gard (I think) consists of two plastic forms that fit over my uppers and lowers. The dentists took plaster casts for this. Connecting the upper form to the lower is a tiny “strut,” about an inch long, that pivots on both ends, such that when deep sleep causes loss of muscle tone and the jaw goes slack, the mandible pivots forward (as it does when you consciously jut it forward to make a funny, “under-bite” face. So far, I’ve been able to use lower CPAP pressure and I no longer use ambien. I have several different sizes of those tiny “struts,” in single-millimeter increments. Last night I put in slightly short struts, to increase the degree of “underbite,” and it helped more. (lower pressure, less dry-mouth) Some snor-gard users are able to dispense with cpap altogether. The only complication for some is some pain and strain on the tempero-mandibular joint. So far that has not happened for me. I’m using the 22mm struts now; I still have the 21mm set to try.
I agree with you: sleep deprivation makes a person perennially dim and kind of stupid. I’m better now (as far as i know).
Sweet dreams!
posted by james on 10-17-2008 at 4:33 pm
Great post. I am getting my CPAP machine very soon and after the night of sleep I had with it during the test; I can’t wait!
posted by Tim on 10-17-2008 at 4:39 pm
I have the exact same machine as well. Seems to work fairly decently. By the way, I am 37, and every time I go to my sleep doctor’s office I am by far the youngest person in there. Respironics has a new full face mask that has a gel lining- it is awesome! I hated full-face masks before I got this one. Good luck with everything!
posted by RussellMania on 10-17-2008 at 4:40 pm
My father “failed” his sleep test. He had so many events in the first 1/2 hour that the staff put him on a CPAP because they were concerned he was going to die in their bed.
Now that my wife has informed me that I snore like a chainsaw, I’m probably headed down a similar path.
posted by dagwud on 10-17-2008 at 4:46 pm
Interesting comments on the dental guard and Pillar thing. I haven’t really looked at that stuff (nor the surgery) but I’ll take a look!
posted by Chris Higgins on 10-17-2008 at 5:08 pm
My husband has been on a CPAP for years (since before I met him, and I met him 6 years ago). He *still* pulls off his mask in the middle of the night. Often, the noise of the air pumping out of the mask will wake me up, and I’ll nudge him to put it back on. Looking at the cool gear you got, Chris, makes me want to shop around. Maybe my husband would benefit from a different type of mask. He currently uses a small nose cup (with a full gel lining), but I was reading this blog to him and he seemed kind of interested.
posted by Amy D on 10-18-2008 at 7:01 am
I have been a snorer for a long time. As I got older, my snoring has gotten more frequent and louder. I also noticed I was tired a lot and liked to take naps during the day. People complained about my snoring and I could not sleep in the same room with other people for fear of keeping them awake.
Finally, I asked my doctor about the problem and he had me try out a CPAP machine. The doc said my airway was closing off up to 70 times each hour, and that I stopped breathing for as long as one full minute at a time! He strongly recommended I start using the CPAP machine, since I was risking damage to my heart due to lack of oxygen.
I had read about CPAP machines before and always thought I would never be able to sleep with one, since I am somewhat claustrophobic. Surprisingly, it only took me a few minutes to get used to, and I was able to sleep comfortably from the very beginning with no problem.
The mask portion is just a small apparatus that fits on the nostrils to blow in air that keeps the throat inflated, thus preventing any snoring. Straps over the head are a little annoying, but they are necessary to keep the nose piece in place. If one changes sleeping positions at night, it’s possible for these straps to move, causing the nose piece to slip off.
I have been using a Dreamhelmet, a combination sleep mask sound-muffling pillow for years now, for sleeping at night and for napping during the day. I always find it hard to sleep without the Dreamhelmet, and I was afraid I would not be able to use it with the CPAP mask, but I was wrong about that too.
After I slept with the CPAP machine and mask for a short while, I tried wearing the Dreamhelmet over the CPAP, covering up the straps – voila, it worked like a charm! I found that the Dreamhelmet actually helps keep the straps in place when I change positions, so now I can sleep all night in comfort, not being bothered by sound, light, or changing positions. The CPAP and the Dreamhelmet are the perfect sleeping combination for me.
I now wake up rested, and I have energy that lasts all day long. I don’t feel so run down all the time or feel like I need an afternoon nap, but I still carry an extra Dreamhelmet in the car with me just in case I do need a nap.
posted by Joe on 10-19-2008 at 12:56 am
I have used a biPAP machine for about 5 years. Very similar to a CPAP machine, but produces 2 different airpressures (hence “BI” instead of “C” (Constant)). The machine automatically reduces pressure when I exhale. I found that better for me than the CPAP machine. Other than that, it’s the same.
Bad news on that: The “BI” machines are more expensive, and the insurance folks sometimes fuss.
But: It solved the problem of me falling asleep at red lights (when I was driving…). I was also out on the high end, having >100 episodes/hour.
It’s made all the difference.
Thanks for the great article and references.
posted by Lion on 10-19-2008 at 7:54 pm
I go for my second sleep study to be fitted for a CPAP on December 3rd. These posts have meant so much to me. Best account I have found so far.
I’m so excited for the hope of not waking up tired. Oddly enough, I do better sleeping 5-6 hours. Much longer and I wake with a wicked headache. Goes without saying that caffeine is a basic survival tool.
I’ve been snoring since I was a small child. The tiredness started around 13 or so, but I chalked it up to normal teenage stuff. It’s gotten so much worse in the last couple years.
I’m hoping better sleep will lead me to a better life. I want to do so many things I don’t do because I’m too tired; go back to college, work overtime, update my blog on a regular basis, fit in some physical activity.
posted by Tina Kubala on 10-20-2008 at 1:41 am
I had the same rainout problem, I bought a hose cover made by resmed it help hold the heated air and reduced the condinsation problem by 50 % + . for 15 bucks it helps alot..
posted by Shawn on 11-10-2008 at 12:34 pm
This is probably the most comprehensive CPAP experience I’ve ever read online, and I’m grateful that you posted it. I’ve been considering getting a CPAP machine for some years now, even though any sleep apnea I have is quite minor. I’m so happy to hear that it really can be integrated into someone’s sleep routine… I had my doubts about that problem since so many people seem to stop using their machines.
posted by Vern Masters on 1-8-2009 at 5:21 pm
56 years old, could not sleep for years. Ear and eye doctor I visited for another reason told me based on the structure of my throat tissues I probably should look into apnea. Long story short, I did. Resisted machine and mask (side sleeper) for another two years. Then my doctor told me it was putting a strain on my ticker and I better do it.
Well, I made myself keep the mask on for two weeks just to see. OMG what a difference. For the first time in years I sleep through the night. And I mean deep sleep like I have not had in years. Trust me. If you are having trouble sleeping and your spouse says you snore to much, go. Go and get one of these things and you will never regret it.
posted by steve on 1-9-2009 at 2:27 pm
Great story. I was diagnosed February of this year, after the worst winter of my life. My health was failing, I was exhausted at all times, and I suffered from anxiety, panic attacks, and depression. I thought it was related to stress, but my doctor had me go in for the sleep study. Horrible experience all around, only slept for about 3 hours, but that was enough for a diagnosis of moderate sleep apnea. I would just like to mention I do not snore, and snoring is not an indication of apnea. This is a common myth. I am also young (29) and skinny, another myth, that you have to be overweight and older.
Overall, now I sleep much better, although it took about 3 months for me to “pay back” the sleep debt I acquired from years of untreated apnea. I still have a few bad days, but the panic and anxiety has recently melted away, I can now be physically active, and my wife is so much happier with me and my demeanor.
The tough part was not adjusting to the mask, although that took persistence. For me it has been the ignorance about the condition. Even after explaining, people just think that you are just “tired” all the time. Well true, but I try to tell them think of the most tired you can get, say you are up until 3AM, and think about how that would feel to live your life like that. Could you get much done? What about the physical side effects of being that tired, headache, weakness, anxiety, shakiness, confusion, loss of focus, etc..etc…
Anyways if anyone reads this please do not resist treatment, it has changed my life and countless others.
posted by Sleeper on 6-25-2009 at 12:09 pm