Advice for sleep apnea please.
December 16, 2007 10:35 PM   Subscribe

Sleep apnea sufferers: Advice needed. Whats it like to have sleep apnea? What treatments have you been given?

I was recently diagnosed with sleep apnea with 15.8 respiratory events per hour on average. More on my side and less while sleeping on my back. I now have an appointment for another sleep study to find out what pressure cpap works for me. In the meantime I could use some real life testimonies about this condition to help round out my research.

Can you tell me how you got diagnosed (symptoms) and what treatment felt like. Did it work? Did you use any alternative to cpap? Did losing weight or anything else help?

Also if you could include your events per hour that would be great. I'm not sure how bad 15.8 is. Its only been described to me as being moderate.

Some more details if it helps:

Time slept: 307 minutes out of 329 minutes
Latency to sleep: 8.5 minutes
REM latency: 89.5 minutes
Stage 1 sleep: took 7.3% of sleep time
Stage 2 sleep: took 72.8%
Delate sleep: .5 percent
Stage REM sleep: took up 19.4% sleep time
Total arousal: 8.6 events per hour

Overall apnea index: 15.8
oxyhemoglobin desaturation to a nadir of : 85%
Supine sleep: 19.9 AHI
Lateral sleep: 9.2 AHI
During REM: 22.2 AHI
Non-REM: 14.3 AHI
Mean Heart Rate: 75 bpm

FWIW, I slept very well there because when I got there I was pretty damn sleep deprived. I usually dont sleep this well.

Any advice and info would be greatly appreciate. Thanks!
posted by the ghost of Ken Lay to Health & Fitness (18 answers total) 10 users marked this as a favorite
Not a first hand account, but I'll share with you what I know.

My mom first discovered she had SA after being diagnosed with pulmonary hypertension, which is very serious. (I don't remember how many events she had, but it was really high.) They put her on a CPAP for a 6 month trial, thinking that alleviating it would also improve the PH. (It didn't, but that's because it turned out that there was another cause for the PH.)

That's been almost 3 years. She's had surgery to help fix the underlying cause of PH, but she's still on the CPAP. As her pulmonologist said -- "Once you have sleep apnea, you almost always have sleep apnea."

She really, really hates the CPAP. They've changed her mask a couple times, but she's never found one that's comfortable. However, not using it really isn't an option for her, so she continues to. (However, she also really, really hated the sleep trial and had to go three times before she actually slept, so maybe you're just a better patient than she is.)

That said, I have two friends who use a CPAP and don't hate it nearly as much as she does. One claims that it's really changed his life, and that he feels much healthier now.

If the machine bothers you at first, ask them to refit the mask or to order a different make.
posted by mudpuppie at 10:54 PM on December 16, 2007

Definitely lose weight (exercise will help you sleep as well). Stop or reduce smoking if you're a smoker. Also does your bedroom get enough fresh air? Is it dusty? Open the window for 10 mins. or so before going to sleep. Get a HEPA air filter?

Another thing to watch out for is coffee or eating too much heavy food. Don't have any caffeine after 3 PM if you can and don't eat anything for a couple of hours before bedtime. Good luck.
posted by Skygazer at 11:11 PM on December 16, 2007

I have a sleep disorder myself. Not apnea, but here's what I know. Apnea is the commonest sleep disorder, and one of the most readily treated. Your doctor has hopefully already explained what apnea is, but in case not, there's a good article here.

Have you slept with a CPAP mask? Some people find it perfectly fine, some people find it intolerable, most find it annoying at first but are able to adapt. You may find the extra quality of sleep you get with the mask actually makes the problem of sleeping with the mask worse; because you're less tired, it's harder to get to sleep with the thing on. Don't evaluate the mask just on one single night, good or bad; it can take weeks even to calibrate the thing properly, let alone get used to it.

Losing weight will help somewhat, for reasons as outlined in the article. It basically has to do with the mechanical effect of fat on your breathing. Have you gained significant weight in your adult life, or were you overweight as a child and young adult? If you can correlate an increase in your snoring and poor sleep with your weight gain, the symptoms may well reverse with weight loss. Another benefit of course is that exercise will make you more healthily tired, and sleep more deeply.

As to the effects of sleep deprivation, if they suggest medication to you it will most likely be a choice between modafinil and amphetamines. I take modafinil; for almost everyone, especially those with any previous history of anxiety, modafinil is vastly preferable to amphetamines. As far as I can tell (and studies seem to bear this out) it's not addictive, and going off it has no side effects beyond merely feeling sleepy again. I often do so on weekends, to catch up on sleep. I expect, in the case of more mild and serene personalities than my own, amphetamines may be better, and may even help more with weight loss. Talk it over with your doctor, of course. :)

One thing you probably haven't been told and I for one hadn't really considered in advance (on preview I see Skygazer mentioned it, but I think there's more to be said) was this: a caffeine habit affects your condition and your treatment. Are you a heavy coffee drinker? Lots of people with sleep disorders are, for obvious reasons. I advise you to go off coffee as early in your course of therapy, whatever it turns out to be, as possible. You probably know what caffeine withdrawal's like, but on the off chance you've never kicked coffee before: stock up on painkillers (ibuprofen works for me), have your last cup on a Friday morning, don't do anything over the weekend, and expect not to be back at work until Tuesday or Wednesday. Caffeine withdrawal sucks, no two ways about it, but in the long run, you're better off without a caffeine habit especially if you're on medication and doubly especially if that medication is amphetamine-based.
posted by aeschenkarnos at 11:18 PM on December 16, 2007

I've got sleep apnea. I initially had a sleep observation done for reasons unrelated to sleepiness / tiredness symptoms. At that point I registered 6 events per hour which they told me was only just barely above the non-apnea range of 2-5.

A few years later when I started to get the symptoms I was proscribed a CPAP machine. At first the pressure setting was waaaay too low and had to be adjusted six times before I could stand to sleep with it on. But now that the pressure setting is worked out and I'm used to it I find it comfortable enough and I feel as though I sleep much better.
posted by XMLicious at 11:56 PM on December 16, 2007

I have apnea, and I use a CPAP. The mask was annoying, at first, but the rest I get with it is pure bliss. I had to spend a week without it last year and it was horrible.
posted by RussHy at 4:20 AM on December 17, 2007

Nth the CPAP. Sure, sometimes it feels like I'm trying to sleep with a face hugger on, but I am sleeping and so is Mrs. Plinth, who has no difficulty letting me know when I'm soring to the point of rattling the roof.

I spoke at length to my ENT specialist about options and he said that the most effective is really the CPAP. There are some surgeries that can be used to correct specific structural issues, but aside from losing weight, they are only effective within those particular defects (IIRC).

What will happen with a CPAP is you sit down with a nurse who will show you around the machine and the various attachments. It comes with a memory card that keeps track of how much the machine is being used and at regular intervals, you'll be asked to turn in the memory card to the insurance company. They compare your usage patterns with statistics for success and if you've successfully developed the habit of using it, then you get to keep it, otherwise the insurance company says it isn't worth it and takes it away.

I have the ability to take the mask off and hang it up at around 3:00AM if it's annoying me. Interestingly enough, my dad has the same skill (not with the CPAP as far as I know), but when he was in college, he snored loudly enough that some of the guys living on his hall stacked up a pile of window screens on his door and knocked and hid. My dad answered the door, the screens fell in on him (as intended). He picked them up and threw them out a nearby window. In the morning, he found out that the window had been closed and he didn't throw them out so much as through the window.

So why am I bringing that up? Know yourself and your own habits.
posted by plinth at 5:21 AM on December 17, 2007

There are several previous threads on this with more advice -- just type "sleep apnea" in the search box top right.
posted by beagle at 5:47 AM on December 17, 2007

15.8 events/hour is moderate (5-15 is mild; 15-30 is moderate; and more than 30 events per hour is severe). Humdified CPAP is more comfortable in my experience. Good luck!
posted by lukemeister at 5:54 AM on December 17, 2007

I'm a "hosehead" - as I've learned I've been called. Starting CPAPing it before the summer.

One thing that I kept hearing was how great I would feel after my first night with CPAP - that I would sleep as I never slept before.

Not true.

I did feel like I had a more relaxing sleep, but it wasn't revelatory to any extent.

However, as I kept using it (and I DID finally start to get used to it), my sleep continued to improve. On the odd night that I missed it, I would wake up miserably in the morning, and fall asleep by mid-afternoon -- much like my pre-CPAP days.

So, I do feel better with the machine, I just don't realize it unless I miss it.

Another thing to note:
Everywhere I turn, I read about how losing weight will make the SA go away. However, I am not overweight. I mean, I could stand to lose some weight, sure. But I'm not, like, overweight overweight. The doctor told me that it doesn't seem to be a weight-related thing for me, but if I did jiggle my weight -- losing 10-15 lbs -- it might fix the apnea issue.

The takeaway is that this is a sensitive issue, and all sorts of 'tweaks' - your body composition, your sleeping habits - can change the story.

Hit me offline if you've got any specific questions.
posted by prophetsearcher at 6:29 AM on December 17, 2007

I had sleep apnea. I know because the noise woke me up. (and housemates told me) I think I've had it for a long time it just never woke me up so I ignored people mentioning it to me.

Someone a long time ago told me they thought it was because i drink wine. So when it started to wake me up I stopped drinking wine after 5PM. Ta-da! No more sleep apnea!

Now I have wine with my afternoon lunch instead of evening.

I don't drink coffee because of anxiety.

Fat seems like it would cause sleep apnea but skinny people get it too, so I don't know.
posted by cda at 6:30 AM on December 17, 2007

I didn't believe I had "The Apnea" when it was first suggested. I only went in to the sleep center because my wife was complaining about the level of snoring, and that's where my GP said to go.

I took the sleep study and found my number was in the mid-20s or so, iirc. Anyway, I started out with a mouthguard device that braced my lower jaw forward and supposedly forced my airway open larger. This was uncomfortable and messed up my bite, so I could not close my jaws without my front teeth colliding. This also may have moderated my snoring, but I didn't feel like I was getting any better rest and what effectiveness the mouthguard had faded with time.

Eventually, I went back and got a CPAP. It took some getting used to, but now I cannot get a decent night's sleep without it. Despite some discomfort and hassle, I must emphasise the bottom line here:


I did not even realize that my constant fatigue was abnormal. It just didn't occur to me that routinely falling asleep at my desk and struggling to stay awake during meetings meant something was wrong with my sleep. I felt stupid all the time: Dumb, slow, unable to grasp anything complex without major effort and concentration. I should have known better. Once I got the CPAP I noticed something very important: I was dreaming again. I was going on long drives and engaging in tedious tasks without wanting to pass out. It no longer feels like I am thinking through syrup. I no longer forget whole conversations moments after I have them. It was like I was zombified for years and then woke up fully.

Good luck; whatever the level of annoyance the mask brings, do whatever you have to, to stick with it.
posted by BigLankyBastard at 6:41 AM on December 17, 2007

My husband has sleep apnea, and he has a CPAP machine.

His quality of life improved immensely after he started using it. It was like getting a whole new husband!

He has always been the type of guy who can't stand discomfort, but he adapted easily to the "nose hose" and has no trouble sleeping with it.

As for me, the noise of the machine is MUCH preferable to the awful, awful AWFUL snoring he used to do.
posted by konolia at 6:41 AM on December 17, 2007

If you get a CPAP, do all you can to get the fit right, and BE PATIENT. It took me about 2 months to get used to it. Stage one will be discomfort, then you'll find a comfortable position but realize you can't move, then you'll get the hang of rolling over, etc., and based on comments above, you may take to it much more quickly than I did. It's a bit of a chore, but worth it in the end. I hate sleeping without it at this point.
posted by jalexei at 6:58 AM on December 17, 2007

I just came out of a sleep study last night where I was fitted with a mask and tested it. Glad to see all these encouraging comments on the CPAP!
posted by TheDukeofLancaster at 7:23 AM on December 17, 2007

oh my god, yeah, what BigLankyBastard said.

i figured EVERYONE was this tired ALL THE TIME, but that it was some kind of character defect that made me give in to it. my ability to fall asleep in meetings was legend among my coworkers.

and then i got diagnosed and got my cpap, and wow, life got much better. it radically changed my relationship to stimulants, too. i have to worry about how late in the day i drink caffeine, for instance.

the evil insidious thought was "wow, with only 4 hours of cpap sleep, i feel as rested as with 8 or 10 hours of pre-cpap sleep... THAT MEANS I COULD HAVE AN EXTRA 4 OR 6 HOURS A DAY..."
posted by rmd1023 at 7:54 AM on December 17, 2007

My experience is like prophetsearcher's. I was not one of those people who had a revelatory experience on the CPAP right away. It took a little over two months of frustration and adjustments to get to where it wasn't waking me up with leaks etc during the night. I also have had to figure out things like that I need to put a band-aid on the bridge of my nose where the mask rests or else I get a huge bright-red zit-like bump there. Very attractive. I had trouble with the strap across the back of my neck causing terrible muscle tension headaches at first as well.

I didn't have a dramatic experience but the fatigue that sent me to my doctor in the first place has abated. Other symptoms I hoped would improve, like a chronic headache, have not improved, and my doctor and I are still looking into those things.

Nthing "stick with it." I was really discouraged because I'd heard so many stories from people who saw immediate dramatic improvement, and I didn't. I had a lot of adjustments to work through and the improvement was less dramatic; like prophetsearcher, I notice how much it's helping most when I sleep without it for a night. But over time, I have found that I sleep 1-2 hours less at night and wake up much more refreshed, and I no longer find myself falling asleep in the afternoons.
posted by not that girl at 7:54 AM on December 17, 2007

I have sleep apnea as well, most likely due to obesity, although there's a history of heavy snorers in my family. I went on a CPAP about one to two years ago.

Keep in mind that your body has built up what's euphemistically called a sleep debt; you will have to "repay" it with good sleep on your CPAP before you hit that finish line where you're astonished to find you actually have enough energy for the day.

If your mouth constantly falls open during sleep as mine does, you may find it of greater use to get a mask that covers both your nose and mouth.

And keep in mind that your insurance plan most likely allows you to get a new mask every couple of months; you may not need to, but nevertheless, check into it. Your body will get used to the various annoyances; I had plenty when I started.

What most convinced me was the fact that allowing sleep apnea to remain untreated is a potentially fatal move. The human body does not stop breathing a large number of times each night and yet continue to function healthily through old age.

Personally, though, I've been fairly fatigued lately, and my pressure may need to get adjusted. So at the moment I'm not good to evangelize about how CPAP gives you an energy boost. It would be, however, far worse if I wasn't using CPAP each night.
posted by WCityMike at 8:33 AM on December 17, 2007

CPAP machine user here as well, was diagnosed with apnea a year ago, with 26 apnic events per hour.

I didn't realize how badly I was sleeping and much an impact that had on my day. It's really been an eye-opener (no pun intended).

Lost some weight, and it's hard to say if that has helped or not. My advice is to take the time to find a mask that works (mine is the "nasal pillows" type, that is a tube that fits under your nose, with cannulas that go up into your nose and straps to hold the whole thing together). My nurse commented that most patients she saw found the nasal pillows more comfortable. The machine brand is ResMed, FYI, but all machines have this mask type, I imagine.

Also, get the humidifier if it's an option, I use mine year round (and you can use cool humidification in the summer).

I have what's called (if I recall correctly) normal sleep phase delay syndrome, which means I can sleep from 4 or 5 am straight through until noon, but that doesn't work in a 9 - 5 world. I seem to tolerate Ambien (both the regular and the CR versions) better than any of the others, and take those 2 - 3 times per week. The rest of the week, a specific ritual (low lighting, warm vanilla milk, 3 mg of melatonin) seem to be enough.

It took me a good two weeks to get used to the mask.
posted by it must be bunnies at 11:03 AM on December 17, 2007

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