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September 18, 2002

Strike Three, But I'm Still in the Game

About a week ago, I received a not unexpected diagnosis of severe obstructive sleep apnea. This form of apnea (Greek for "without sleep") means that many times an hour, I stop breathing because of relaxed soft tissue in my throat. In yesterday's New York Times, by coincidence, Jane Brody's regular column was devoted to sleep apnea, so I learned that as many as 18 million people in the US have apnea and only 10 percent are diagnosed.

This is the third major health problem I've had in my short thirty-four years. The first, well, despite my well-known openness, I'd rather not discuss, but it involved minor surgery and a long uncomfortable recovery. The second was Hodgkin's Disease, which I've documented all over my site. Sleep apnea may be one of the easiest and most annoying, because there's a simple cure: a continuous positive airway pressure (CPAP) machine.

The CPAP pushes a very small amount of positive pressure through a mask you wear just over your nose and that small pressure--8 cm in my case--makes sure that even when you lose all tonality in your muscles in deep sleep that your soft tissue doesn't obstruct your ability to breath.

The medical technician who advised me and my wife Lynn on the equipment said that insurance companies won't pay for outright purchase, but insist on a 30-day lease, followed by a purchase. Why? Because even though a CPAP machine works for almost everyone--surgery is painful, not a complete solution, and often not successful--it takes some adjustment. Twenty percent of people who get a CPAP return it, even though they're signing off on a reduction in their lifespan by 15 or 20 years or more, as well as a declining quality of life as they approach that shorter end.

The machine isn't hard to use, and after a night in the hospital's sleep study area on Monday night to get the titration--the amount of pressure I needed--I used it for the first time on my own last night. It felt a little strange, mostly good. I got to sleep right away, and slept better than what my sleep experts tell me has probably been 15 years. Who knew?

Friends ask me how I diagnosed, and I credit two people: my wife and my doctor. My wife was somewhat fed up with my snoring, but also worried about how severe it sounded. My doctor listened to symptoms and sent me home with a portable sleep tester: an oxymeter that measured my blood oxygen level over two nights. The sleep clinic analyzed this, found a few disturbing but small signs, and sent me off to a full night sleep study.

During the sleep study, they cover you with from head to toe with electrodes and sensors: polysomnography! They monitor you while you sleep to see whether you wake, what level of sleep you descend into, and your body movements. Apparently, when on my left side, I have virtually no apnea, but it's impossible to always sleep on one side, as nicely as that might solve the problem.

The sleep study was interpreted by a sleep doctor, and I met with an APRN (advanced practice registered nurse, otherwise known as a nurse practitioner) who went over the results and recommendations.

It was a good process, and I recommend it highly to anyone who has been unable to get a good night's sleep, has snoring reported (a symptom but not exclusive to those with apnea), and has frequent problems with alertness during the day. Apnea can also cause memory loss or disorientation.

Posted by Glennf at September 18, 2002 9:04 PM

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Comments

I have had this cpap for 2 mo.. It works in the sense that I don't snore ( as per my wife) I find the Mask dificult and I rarely get thru the night without ripping it off because I can'tg stand the pressure on my face or my nose closes up.
After using Afrin to open my nose at night I now have alergies w/running nose so bad I can't go out side with out a dust mask. I NEVER had Alergies before.
HAs any one else had this problem?

Regards
Dave

Posted by: ,dave norman at October 16, 2003 7:52 AM

Anyone been diagnosed with apnea but later found out it was just alergies? I have no daytime symptoms of apnea, just snoring at night. I have gone up to 200 lbs from 175 in two years (1 inch neck size). They are telling me I have sleep apnea . . but noone is addressing the congestion I have at night. Anyone want to comment?

Posted by: James Lewis at July 1, 2003 5:14 PM

My sleep doctor called me "a poster boy for apnea." I've still got the printout around here somewhere and it's clear that I was getting only minutes of sleep a night.

I am one of the 20 percent who can't use CPAP -- I actually got less sleep with the machine than I did with the straight apnea. The air pressure, the sound, the straps (I even tried the nose-plug thing); it all just kept me awake.

My personal solution was to learn to sleep on my side -- the person in the bed with me says that while I still snore, she no longer hears my breathing stop (which is what got me to the sleep doctor in the first place).

A friend who was on CPAP for about five years recently switched over to an oral applicance (aka mouthpiece) which was custom-made by a dentist for her. She says that it works just as well as the CPAP and that her husband now sleeps because the CPAP machine -- while relatively silent -- still bothered him.

Posted by: Dave Cole at September 30, 2002 11:52 AM

http://www.bartleby.com/61/68/A0366800.html says that "apnea" is from New Latin (which, in turn, go tit from Greek) and means "without breathing (from pnein, to breathe...)"

Posted by: Guy K. Haas at September 27, 2002 12:41 AM

Thanks, Tom! I'm using some nasal spray, but I bought a unit with a humidifier built in. Since I'm paying out of pocket, the equipment guy connected with the sleep clinic got me a sweet deal on a top-of-the-line unit for 1/3rd the new unit's cost. It has about 45 days of use on it, so it's practically new, and has 18 months or so left on its warranty. I'm using the Ultra Mirage mask.

The humidifer seems to help, but not sure! Need to mess with various settings. I think my nose problem stems from the mask that I used at the sleep clinic. I broke out in whiteheads along the bridge of my nose the day after the study, and Lynn suspects they didn't properly clean the mask I used there. So now I'm exacerbating the healing of the whiteheads which have turned into scabs. Yuck.

Yeah, the six-hour sleep thing: I'm sleeping about 7 to 8 hours with one or two wakings per night, and feeling really amazing in the morning.

The first day after sleeping with a CPAP, I came in, wrote several thousand words, conducting some phone interviews, made some corrections to existing articles, and was generally unbelievably productive.

Posted by: Glenn Fleishman at September 23, 2002 7:14 PM

Glenn, if your nose is raw, that may be a sign that you need to adjust the mask a bit, or even switch masks to a different model. If you're still hurting after a week, and fiddling with the mask's straps doesn't help, talk to your RT again. I've also had a bit of problems with nasal dryness from the constant airflow, but I looked into a humidifier, and it's a huge PITA, so before I put the mask on, I do two or three snorts (ah, that old druggie terminology comes back into play) of over-the-counter saline nasal spray. Not the decongesting kind, I hasten to add; just saline. It seems to help. If I wake up a bit early and feel dry, I shut the machine off, slip the mask aside, take a spray or two, readjust things, and go back to sleep.

Speaking of which, when things are adjusted right, I now only need 6 hours to feel perfectly rested and alert. Before the machine, 8 to 10, and I still felt dopey most of the day. I got a new machine in June, and it worked fine until last week, when it started acting up. Got a loaner today, but the past several days have really pointed up for me the difference this therapy makes; I've felt awful, and my productivity has plummeted. I'm looking forward to a good night's sleep and getting back to work.

Posted by: Tom Negrino at September 23, 2002 7:07 PM

Hey, Tom, my sleep RN said I'd find lots of friends who were already on a CPAP/Bi-PAP, and lookee there! I'm still in the adjustment phase, but I'm having no difficulty sleeping with the mask -- 8 hours of good solid sleep is hard to argue with.

And, I agree about Rick: Rick, the stuff you're describing is all about the nose and sinuses, which have little to do with apnea -- they're only symptoms. Surgery was highly deprecated by everyone I talked to: only 30 to 50 percent successful, only a temporary fix for many people, and expensive and very very painful with a long recovery period. Also, irreversible.

The CPAP (or Bi-PAP) works for practically everyone. It's just a hassle, but a pretty minor one compared to the benefit.

The bridge of my nose is a little raw from the first week, but the mask itself is comfortable, and the combination of white noise and rhythmic breathing puts me to sleep faster than I've ever been able to nod off in my life!

Posted by: Glenn Fleishman at September 23, 2002 6:22 AM

The picture linked in the comments is the mask that I use; I like the way that the tube goes up over my forehead. It's actually been deprecated in favor of a newer model, the Ultra Mirage, that I don't like as much (I don't think it's as comfortable), but that breaks less.

I've been on BiPAP (different pressures on inhale and exhale) for about two years now. It's made a big difference to me, because I don't need to take a nap in the afternoons now and I don't feel tired all the time. The living longer will be a nice side effect, too. It's a bit of a pain to have to travel with the machine, but you get used to it. My apnea is pretty nasty; my doctor said that at times during the night, my blood oxygen level dropped to "just above that of broccoli."

If I were Rick, I'd do some more research and consider changing doctors; CPAP is almost always the treatment of choice over surgery. Before my sleep study, I tried the sprays and the nose strips, and they just don't really do the job.

Posted by: Tom Negrino at September 22, 2002 2:22 PM

Long Term Review: Just as a general comment, my father suffered from sleep apnea for years and years and has been living with the device you describe for a few years now -- and has never been better.

Posted by: Scott Johnson at September 21, 2002 8:40 AM

That picture is of the Mirage mask, which is actually one of the nicer, less obtrusive masks out there. You should have seen the WWII Gas Mask I had for my sleep study...

Posted by: Keith at September 20, 2002 11:29 AM

Glenn, my condolences. I too was diagnosed w/ apnea, tho just barely, only enough, according to my doctor, that we could get my health insurance to pay for surgery to quiet my snoring (which would otherwise be deemed "cosmetic"; tell that to my wife). So far I've decided against and have made due w/ alergy medicines, nasal sprays and those strips they sell in the drug store to flair your nostrils. That and sleeping on the couch from time to time. Not to make light of your condition, but to really put the agnony of apnea in context for your readers, you have to show a pic of the CPAP masks: http://www.designawards.com.au/ADA/98-99/INDUSTRIAL%20DESIGN/042/large-3.jpg

Best, R-

Posted by: Rick Bruner at September 20, 2002 10:17 AM

Welcome to the group. I'm at 11cm, myself. 99 apnea events per hour. (Every 36 seconds, fer chrissake.)

Rather like sleeping in a wind tunnel, isn't it? I find that after three years, I don't even notice the air pressure anymore.

Posted by: Keith at September 19, 2002 10:51 AM

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