Saturday, September 16, 2006

The Masked Crusader!

Blog readers! Do you suffer from constant fatigue? Do you doze off during the day? Do significant others and housepets refuse to sleep in the same room with you, because you snore loudly enough to shake walls and rattle windows? Do people who've heard you snore report a characteristic pattern of increasingly loud snoring, ending in a choking gasp?

If you answered "yes" to these questions, then you, too, could be suffering from a sleep disorder!

The best-known sleep disorder is apnea, a potentially life-threatening condition in which patients stop breathing during their sleep. The brain alerts the body to wake up and breathe; the body dutifully obeys, interrupting sleep. As a result, the patient will be exhausted in the morning, but won't remember ever having woken up. In addition to creating sleep deprivation, a serious condition all by itself, apnea greatly increases the risk of heart attack and stroke.

Gary and I learned about apnea when his mom was diagnosed and started using CPAP (Continuous Positive Airway Pressure), a machine that blows pressurized air through a mask into your nose so your airway will remain open and you'll keep breathing. Because we were educated about sleep disorders, we had a good hunch about what was going on several years later, when I began suffering from severe daytime fatigue, combined with increasingly dramatic snoring at night.

Based on my symptoms and Gary's description of my snoring, my doctor was convinced I had apnea. When I went for my sleep test, it turned out that I didn't have apnea; I have a similar but less serious condition called Upper Airway Resistance Syndrome (UARS). My airway narrows when I sleep, but doesn't close completely. My sleep is still interrupted by "wake up!" messages from my brain -- an average of sixteen times an hour, according to the sleep test -- but I don't stop breathing. This is a Good Thing.

The treatment is the same, though. Yes, that's a picture of me in my CPAP mask at the beginning of this post. My sister took the photo two years ago during a summer roadtrip, during which she memorably described the CPAP headgear as looking "like a cross between a vacuum cleaner and a jock strap." Pretty glamorous, huh?

But I feel so much better on CPAP that I've now become an absolute evangelist for sleep testing. I recently exhorted a friend to have it done; it turns out that she has severe apnea, and in the month or so that she's been on CPAP, her blood pressure has gone down to its healthiest level in years.

Visiting my father a year or so ago, I became convinced by his snoring, and his daytime fatigue, that he had apnea and should be tested. He talked to his doctor at the VA, but because he couldn't describe his own symptoms very well (we can't hear ourselves snore!), they didn't give him the test. So this summer, I wrote a letter to his doctors describing his snoring.

It worked. They gave him the sleep test. He called me a week ago to report that he indeed has apnea; we were both very excited by this news, because starting on CPAP could make him feel so much better. Because the VA moves slowly, he has to wait a while for the equipment, but he's feeling hopeful about the outcome.

Yesterday, he called me with the official results of his sleep test. According to the VA, 5-15 sleep interruptions per hour indicate a mild disorder; 16-30 indicate a moderate disorder, and anything over 30 is severe. My father had an average of fifty interruptions an hour. And he's already had heart trouble and one mild stroke.

I can't tell you how happy I am that I said something!

So if you have these symptoms, or if someone you love has these symptoms, please, please, please look into sleep testing!

Q: If I think I have a sleep disorder, what should I do?

A: Consult your doctor. The first step will probably be bloodwork to rule out other possible causes of fatigue, like thyroid problems. If everything else checks out, you'll be sent for a consultation with a pulmonologist. Bring a significant other with you! If you don't have a significant other, set up a recorder next to your bed so you'll have a tape of your own snoring. As my father's case illustrates, it's very important for the doctor to hear the testimony of someone who's actually heard you snore.

Q: What's the sleep test like?

A: Oh, it's very entertaining. You show up a few hours before bedtime at a lab with a bunch of bedrooms. Techs spend forty-five minutes or so hooking you up to so many wires, monitors, belts and microphones that you look like someone getting ready to go up in the space shuttle. (Really, I wish I had a picture of myself wired for the sleep test.) And then they tell you to go to sleep.

All the wires and monitors are pretty lightweight, and the labs invest in good beds, but many people still have trouble sleeping. Part of the problem is that sleep labs, by definition, are filled with people who snore really loudly. Before my test, I was told that if I showed signs of apnea, I'd be woken up halfway through the night to be fitted with CPAP. At that point, I desperately wanted CPAP, so I lay awake, listening to the building vibrate from other people's snoring. Periodically somebody's snoring would stop, which meant that person had been woken up and fitted with CPAP. I finally dozed off . . . and was woken up and fitted with CPAP, to my great joy!

And then I woke up and discovered that I wasn't wearing CPAP. I'd never been wearing CPAP. I wanted CPAP so badly that I'd dreamed about getting it. I went home literally weeping with exhaustion and frustration. Luckily, it turned out that all the wires and monitors had picked up proof that I had UARS, so I got my CPAP anyway.

Q: But isn't CPAP, well, uncomfortable?

A: It can be. The biggest challenge is finding the right headgear, but there are lots of different kinds -- ranging from simple nasal cannula, like oxygen tubing only thicker, to full-face masks -- so you'll have a wide range of choices. If the first thing you try doesn't work, don't give up! Your medical provider will work with you on this.

I have a very small head, and wound up having to wear a pediatric mask. It took me about a month to figure that out and to find headgear that worked for me. During that month, I was frustrated and miserable. Since then, I've been very happy.

Q: But isn't having to deal with the machine a pain in the neck?

A: No, not really. It's quite small, and very quiet and easy to clean, and there are even battery-powered models for camping. Plane travel's a bit of a hassle, because the machine has to be carry-on. (Do not put your CPAP in checked luggage, because it will get thrown around and will break. I'm speaking from experience.) Also, CPAP machines often have to go through special tests at airports to make sure they aren't bombs. But the folks who work at security see hundreds of these machines a day, so they're friendly and sympathetic. They don't really think CPAP machines might be bombs, but their bosses do. The screeners are just doing their jobs. And you may have a chance to encourage your sleepy security screener, whose wife complains about his snoring, to go get his very own sleep test. You could be saving a life!

Q: Yeah, yeah, yeah. But, come on . . . you know! Doesn't it, doesn't it interfere with -- oh, you know! Doesn't your husband hate it that you're wearing this thing that looks like a cross between a vacuum cleaner and a jock strap? And doesn't that, um, ah, have a negative effect on your marriage?

A: Oh! So that's what you really wanted to know!

No, CPAP does not interfere with recreational intimacy. I wear CPAP when I'm asleep. My husband and I engage in recreational intimacy when we're awake. Sleep deprivation has a far more negative effect on recreational intimacy than CPAP does.

Gary loves my CPAP, because I don't snore any more.

Or as the sign in my pulmonologist's office puts it:

"Laugh, and the world laughs with you.
Snore, and you sleep alone."

So, all you snorers, what are you waiting for? Go get that sleep test!


  1. The image puts a whole new aspect to the old post coital cigarette (although I'm sure you bon't indulge in THAT foul habit)

    Cathie snores. I don't. She also suffers from asthma and most of the time I don't find her nasal snufflings much of a bother (I normally have other reasons for being awake at night - you're a writer, you don't need me to tell you)

    On the other hand, if it will improve her chances of that long and peripatetic retirement she's planning, I think I'll mention it to her when she wakes up. She's a night nurse (mostly - but that's another story about management rather than sleep problems) and could write a LONG book about disrupted sleep patterns.

  2. I've been on CPAP for four years now - high among the best things to happen to me, somewhere behind my wife and children. I don't go anywhere without it. It just adds one more request on those rare occasions when we can charter a sailboat: it has to have a hot socket, like a car's lighter socket. If my snoring was hard on my wife despite separate rooms, imagine what it would be like on a 30 foot sailboat!

    I will say the security people at airports have gotten a bit more anxious about it. However, as for you, it's made such a difference for me!

  3. Martyn: What kind of nursing does Cathie do? And you'll notice that "shift work" has its own button on the sleep disorders site!

    Marshall: I don't go anywhere without mine, either, although I've learned to do a careful check to make sure I have all the parts, because so often I've forgotten to pack one of the CPAP parts, which leaves me scrambling around a strange city trying to find a water reservoir or power cord or hose or whatever. Very annoying!

    If I traveled more, I'd try to get one of the newer, even-more-lightweight machines. The last time I flew, the security guy told me that there are some new transparent CPAP machines now. The airport folks love those, because they're easier to screen.

  4. Anonymous10:04 AM

    I am currently trying to find the right mask, but the respiratory therapist is rude and obnoxious about letting me try different masks. This bugs the bejesus out of me because trying on a mask sitting up in an office is NOT in ANY way comparable to trying to sleep in it.

  5. Anon, have you tried the nasal cannula? That doesn't require a mask at all. I loved it, but I have tiny ears and the tubing would never stay hooked over them properly, so I wound up having to go back to a mask. If you have bigger ears than I do, though, that might be a solution.

    I highly recommend; they were really helpful to me when I was looking for a new mask. They might be able to suggest something that would work for you. Their toll-free number is 1-800-356-5221.

    Good luck! I know from experience that this part of the process requires patience and persistence, but the results are worth it!

  6. Hey, anyone who can look glamourous in a CPAP get up doesn't have to worry about it affecting their sex life! LOL!

    I snored horribly until I lost 30 pounds, now it apparently isn't so bad, according to hubby.

    I was beginning to think I HAD a problem because he was waking me up all the time to tell me to stop snoring!

    We use a simlar idea, called BiPAP in the ER and it works miracles on people in heart failure. It has saved many a patient from needing intubation!

  7. I to wear this sensual apparatus to bed. Mine thoughis a full face mask since once I fall asleep my mouth flies open so the nose one did nothing for me. It took preserverance but once I got used to the thing, I'm glad I have it.

    My son, as a little guy of 11 or 12, would always watch the news every morning before school (he also wore pocket protectors so what can I say) and sometimes while waiting until time to drive him I would snooze on the sofa. He told me plenty of times, "Mama I had to go in my room to watch the news this morning because you were snoring so loudly".

    He's all grown up now. My dog doesn't care.

  8. Anonymous3:35 PM

    Your sister's remark about the mask being "like a cross between a vacuum cleaner and a jock strap" made me laugh, which I needed after struggling to get used to this contraption for a couple months now. Tried the full face mask, but I feel like a dog with his head out the car window. Back to the nose mask. I agree you have to be proactive with apnea treatment and grouse until you can find the right arrangement.

  9. kenny7:26 AM

    What an interesting place the web is. I stumbled on to your blog during an image search for Islamic Art and saw your blog on CPAP. I had sleep testing a few years ago, got a machine, couldn't stand it, could never get past 2 hours with it. Recently remarried wanted to give this marriage every chance to succeed so I tried to use the CPAP again. I now sleep with it every night and would have a hard time sleeping without it. By the way, when I snore it can be heard downstairs in the family room with the television on!


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