People's Experiences with Sleep Apnea & CPAP?

February 17, 2005 2:32 PM

I was recently diagnosed with moderate sleep apnea.

My CPAP titration will be done a week from Saturday. I am wondering if people could share their experiences with CPAP; from what I understand, it can give apnea sufferers a dramatic upsurge in their energy and can lower blood pressure. I'd especially appreciate any experiences that correlate with weight loss efforts, as well as any experiences about CPAP treatment affecting people's teeth. (I don't think it does, but I did find one person's experience in Google with regards to their teeth feeling odd.) Finally, any advice current users of CPAP could offer would be appreciated regardless of subject, whether it be good models, tips to getting used to it, or anything else you'd like to share.

posted by WCityMike to health & fitness (18 comments total)

I've had good luck with the REMstar models. Unfortunately, it's a lot of trial and error as to what will work for you. I think most of the CPAPs themselves work pretty well, but the facegear differs a lot. I used to have the full face mask, and now I have the thing that just pumps air directly into your nostrils. I've had mine for a long time now (>10 years), and it's a life saver, though I still hope to get off it some day. It does take some getting used to, so keep with it: after a week or two, it gets a lot easier. The teeth feeling odd thing probably happened because the sinuses sit right on top of the teeth.

You want a model that's not too big (so you can travel with it) and that will stay securely on your bedside table. The CPAPs are pretty expensive, so if you knock it off the table, there's a bit of terror involved, though I've done that without hurting the machine.

Other things you'll find with time are whether you need a humidifier and what sleep positions work best with it for you.
posted by anapestic at 3:17 PM on February 17, 2005

With regard to weight loss efforts, a diet and excersise plan along side the use of a CPAP will greatly decrease snoring and apnea incidents. You'll wake up feeling great, I guarantee.
posted by bryanzera at 4:04 PM on February 17, 2005

I have used one for about 18 months now and it has literally saved my life. The first morning after I had used it at home, I woke up refreshed for the first time in memory. I also come from a family with sleep apnea (both parents) Some things that I noticed.

-You'll look funny in the mask, get used to it. Everyone does and it is easy way to get laughs from the current sleep partner. I tend to look like an elephant in mine.
-Breathing only through your nose can take some practice. Eventually you'll get the hang of it.
-Use a saline nasal spray before bed. Your nose can get stuffy from all of the air blowing in and it helps keep the airway moist.
-Your energy will skyrocket. You will feel like a brand new person. Your love life, exercise habits, and work will improve just from the increased energy levels.
-Wash your headgear once a week. Wash your nosepiece daily. Liquid Ivory soap works pretty good.
-If you have a cold, put the mask on, and open your mouth. Let the air come out through your mouth and it will help clear your nose enough to use the mask that night.
-Don't worry about the whooshing noise. You'll get used to it and your partner will appreciate it much more than the snoring and apnea moments.
-Know your rights in regards to travelling. As a medical device you can carry your CPAP on a plane without a carryon penalty. It is essentially a free extra carryon. See the American Sleep Apnea Assc. for more details.
-Clean/replace your filters every few months. It makes a big difference especially if you have pets.
-Readjust your head gear once a week. This tip from the DME provider is priceless. The neoprene straps on my headgear stretch funny sometimes and can get tangled. Re-adjusting the fit (i.e. uinstrap everything and re-fit to your head) once a week will make sure it fits properly.
-Your nosemask may leak air. Try adjusting the straps, placing the mask against your pillow when you sleep to the side, or moving it up or down on your face. ine tend to ride up a little and I hahve to move it down sometime in the night.

But the biggest thing I can tell you is not to give up on it. It WILL help, but it can take a while to get used to. So stick with it and eventually it will be second nature. I can't sleep without mine now.

Feel free to email should you have specific questions. Good luck.
posted by ..ooOOoo....ooOOoo.. at 4:46 PM on February 17, 2005 [2 favorites has favorites]

I've been on my BiPAP since last July. Ditto pretty much everything ..ooOOoo....ooOOoo.. said, except, I didn't notice any upswing in energy but it might be attributed to how severe my case is. I had to have a BiPAP (dual-pump?) not a CPAP because the regular (single pump?) CPAP doesn't generated enough pressure to open my throat up. In fact I was about this close > < to needing a tracheotomy. my machine is a respironics with built-in humidifier. it's the i've used but it seems to work fine, though even with the humidifier my mouth tends to dry out and my tongue sticks to the roof of my mount and my cheeks to my teeth. i have a shallow nose mask. can't remember the exact model. i would also be willing to answer any further questions, as much as i can. br>
I do feel it saved my life. I'm 37 and people seem to die from congestive heart failure due to apnea in their early 40's. I know I'm getting good sleep. I have a small unit, er, I mean BiPAP, about the size of a shoebox, and I've even taken it on trips on my motorcycle. Neither my (ex) girlfriend nor my riding buddies who share rooms with me on the road have been bothered by the sound of the BiPAP. Could be because they're usually drunk...

Addressing some of the rest of the original post, my blood pressure has not gone down. In fact I'm seeing my doctor about it next week. But I'm pretty overweight, about 335-340, so I'm sure that has more to do with it. I tended to clench my teeth a bit when I first got the machine, but two dental checkups later and there are no problems.

Oh, and, ..ooOOoo....ooOOoo.., thanks for the tip about colds. I had a head cold around Thanksgiving and it was a bitch. I'll give that a shot next time.
posted by friarjohn at 5:08 PM on February 17, 2005

It makes a _huge_ difference. I've got a ResMed BiPAP machine, and it works really, really well. (I've only ever used bi-pap, but especially if you need to use a higher pressure, it apparently makes a huge difference, since it responds to your breathing, and cuts down the pressure when you're exhaling to let you breathe out easier.)

Even though I've got a pretty seriously deviated septum, I find the nose mask much more comfortable than the full face mask, primarily because you can get a nose mask with the gel cushion that you form to your face with hot water (like an athletic mouthpiece). The full-face masks I've tried have a hard plastic edge with just the standard silicone fringe, and if the shape of the hard edge doesn't match the configuration of your cheekbones and nose, they leak really easily.

Overall, though, it's a life-changing experience. I was at a point where I was practically narcoleptic, and the morning after I did my sleep study was the first time I had felt fully rested in months. Since getting on the machine, I sleep like a friggin' baby, and it's made a huge difference in having the energy to work out regularly and get in better shape.

As far as the teeth go, I've noticed kind of a funny sensation sometimes when I've used the full-face mask (which I still do when I'm really congested), but that seems to be basically the fact that you're keeping your mouth in a much more constrained environment than you normally would. With the nose mask, I've never felt anything in my teeth, but I do definitely sometimes feel a kind of strange lingering scent in my nose in the mornings--not moldy/mildewy, but almost like that kind of metallic, ionic smell that you get when it just starts raining. Never really worried me, but definitely something I've noticed.
posted by LairBob at 5:22 PM on February 17, 2005

My partner has been using a BiPAP for over 10 years now. She always tells people to be sure to get a heated humidifier. An unheated humidifier feels like cold daggers going up her nose (she even rigged a heater from a autodrip coffee maker once, when her heater was in the shop).

She refers to the time before she got the BiPAP as "the grey world". Claims it saved her life. She uses it *every* night.

She did not loose weight or gain weight when she started using it, but is now having success with Atkins. Weight loss has not yet affected the pressure she uses.

I find the sound of it rather relaxing, in a white noise kind of way. It's been kind of fun learning about the machine, how to hack it, put it together, get it through airport security, etc.
posted by QIbHom at 5:55 PM on February 17, 2005

I was not diagnosed with sleep apnea or anything like that, but I was a regular snorer- bad enough that the wife made me wear BreathRight strips to bed so she could sleep.

Anyway, I've lost 30 pounds on the South Beach Diet and my wife says I no longer snore even without a BreathRights. And the weight was lost in only 6 weeks (I hope to lose an additional 20-30 pounds). South Beach is designed to lower cholesterol, triglycerides & blood pressure, and a happy coincidence is that you can shed pounds with it as well. The only regular exercise I'm getting is a 20 minute walk 4-5 times a week.

YMMV since I've lost more on the diet than is expected. A friend started after I did and isn't following it as strictly, and he still dropped 15 pounds in the first month.
posted by Doohickie at 7:48 PM on February 17, 2005

Apologies for the long answer, but I love possibly being able to help! Like friarjohn, I also didn't experience a sudden upsurge in energy, which has been really disappointing to me. Without the CPAP, I spend about 8 minutes an hour not breathing, so clearly it has to be having a positive effect in my life! The doctor, after nearly two years now, is still tweaking the titration for me. I use a REMstar Pro with heated humidifier. I *do* sleep better, and I don't wake up with headaches anymore (I used to snore something obscene). It could easily be that I just don't get enough sleep every night. I average about 6-7 but probably need 7.5-9.

Not my teeth but rather my jaw will hurt sometimes if I drink too much the night before. I think it leads to my clenching my jaw in my sleep.

I needed to have a full face mask since even with a strap around my head (like Stan Laurel with a toothache), my mouth would open in my sleep, I'd start snoring again, and the air would pump out my mouth, effectively blow-drying it. Not too pleasant to wake up to.

Some tips:
I can't remember if you want to keep the unit higher than your head or lower if you start having condensation develop in your tube (which can run out on your face!), but you'll figure that out. (Mine is really close to even with my head, and I no longer have a problem with it.)

Aerophagia might be a word you have to learn: with that air getting pumped down your throat, you'll end up swallowing a lot of it, and you will wake up bloated and farting. Sometimes it's really painful, even turning over in bed and feel like something's going to burst within you. Fortunately, it's just air in those farts (plus whatever would normally be there), so in five minutes to an hour, it'll work its way out. If you've got kids, maybe you'll be able to impress them with your prodigious farting! For some people this is just an early phase in their CPAP using experience, and for some it's every day, and I bet some people never experience it at all. It's worse when you take longer to fall asleep--you actually do the most air swallowing when you're awake!

A lot of people initially like the option of manually setting the CPAP lower and letting it step itself up as you fall asleep. Most people, I think, ultimately get used to just running it at full blast.

My silicone mask leaves my skin dried out sometimes, especially the top of my nose. I get the occasional "What happened to your nose?" I should probably clean the mask more often and keep some moisturizer on hand.

Finally, you might really appreciate the forums and info at sleepnet.com. Good luck!
posted by kimota at 9:33 PM on February 17, 2005

I am unfortunately going to have to be the voice of dissent here, although I will add the caveat that I'm not convinced I was accurately diagnosed. That being said, I was prescribed a CPAP machine about 6 months ago for treatment of sleep apnea. My sleep test showed periods of three to four minutes of not breathing every half hour or so.

My initial feeling on all of this was, THIS IS GOING TO CHANGE MY LIFE. At this point, however, I've stopped using the CPAP because I don't feel it accomplishes anything. Perphaps my pressure wasn't high enough, I'm not sure, but I used the thing for three or four months with absolutely no change in my sleep behavior (except for not being able to get to sleep with that thing strapped to my head) and no improvement in my daily exhaustion, headaches, etc.

My conclusions on all this are mostly that I feel I was misdiagnosed, mainly because the two nights I was sleep tested, I didn't really sleep. Between the wires and the horrible hospital bed and the terrible pillows I never got to sleep, so I can't understand how they could get an acccurate idea of what my sleep patterns are really like. If I do really have sleep apnea, I feel like the CPAP machine should have had some minimal impact on my sleep, even if the pressure was too low - enough that I could say, yes, this is addressing the problem, just not strongly enough.

So, I guess my point is that if apnea is really your problem, there is a lot of consensus that the CPAP works. However, I feel that this is an overprescribed solution for an overdiagnosed problem. I would be sure that you are convinced by the evidence that the doctor gives you that apnea is indeed your problem and I would encourage you to ask as many questions as possible and to not be afraid to go back after using the CPAP and say 'this is not working' if indeed that is the case. Sleep is a very complex issue and I dont think the 'professionals' really know as much about it as they profess.
posted by spicynuts at 8:38 AM on February 18, 2005

I was diagnosed with Moderate Sleep apnea almost a year ago. It's been a hellish year, only made worse by an initial mis-titration by my first sleep doc.

The sleep studies are critical, here are some important steps.

• Read your study instructions carefully, follow to the letter.
They will probably tell you to avoid any caffeine the day of -- this is really critical. Also, no alcohol day of.
• If you're feeling off, re-schedule. Sick? Reschedule. Allergies? re-schedule or be sure you're getting them treated.
• Consider staying awake the night before.
Ask your doc if this is a good idea, but my instructions asked me to stay awake some or all of the night before, and no napping the day of.
• Ask your doc if you can take the cpap machine home on a low pressure setting before the study
. Getting used to the machine before the study will help you get accurate results. This is almost definitely what killed the last year for me. Regarding your treatment:
• Don't believe the hype
Lots of people have immediate good results from their CPAP treatment. Good for them. Don't expect it (as several people above have mentioned). If you've really got it Cpap will help, but I had a major disappointment because people kept telling me "you'll wake up a new person".
• Don't give up
Despite the above, keep up with it. It took me 4-5 months to figure out what would work well for me. And it is working well.
• If you've got doubts, get a 2nd opinion
My first doc had me running at a pressure of 13. I finally went to get a 2nd study and found out that a pressure of 6 treats me just fine.
• Try different setups
If it isn't working for you, try as many different setups as you need to get it right. The 'Adams Circuit'/Nasal Pillows style mask works great for me. The Nose and full face masks didn't. I needed a humidifier. a Spirit Autoset machine worked much better for me than the remstar machines. It takes some fiddling.
• This may not be the reason you're feeling crappy
Even if you do have sleep apea, it may not be the only problem. One sleep doc I saw said that Sleep/Anxiety/Depression are all closely linked. Treating my depression had a major impact on my sleep and sleep apnea treatment. Pot calling kettle Black: I really found the sleep apnea boards to be of little value. (Talkaboutsleep.com is one). The people there seemed really bent on Cpap as the only solution. In my case they were wrong, but not willing to consider any other information. If I had to do this again, I'd skip the online forums. The bottom line is that Cpap should make you feel better. There's no other good measure of whether you're being treated effectively (sleep studies are too limited to give you any real information, IMHO). Once you've gotten your setup down, adjusted to the machine (and the farting), and are sleeping well, you should start to notice life getting better. If not, go back to the sleep doc and your GP and try again or try other avenues. Lots of the information above is really good as well, particularly about machine maintain.

posted by daver at 9:57 AM on February 18, 2005

p.s. Feel free to mail me as well, there's plenty more to talk about. Good luck!
posted by daver at 10:02 AM on February 18, 2005

God, I'd love to have one of these machines. I don't have health insurance - if any of you have a CPAP you are going to discard, please holler to my e-mail address!
posted by goofyfoot at 10:17 AM on February 18, 2005

Just wanted to say to everyone thank you so far for the very amazing and informative responses -- they're very much appreciated. Life has been a bit hectic over the last few days so I've not had a chance to respond as actively as I'd like to the discussion in this thread -- but I'll be checking in again either tonight or over the weekend.
posted by WCityMike at 10:33 AM on February 18, 2005

"Aerophagia "

Kimota - thanks for identifying that word. I had that happen (again) just last night. The "gas" was awful. The first time it happened, last summer, I swallowed so much air so quickly that I woke up belching, which continued for a few minutes. Straight. No break. Since then I've mostly just had a little bit of extra flatulence on occasion.

Daver - I've felt the same way about the forums and stay away for the most part. I have a coworker who has been on a CPAP for awhile and she's been a much better resource. This one thread here has been more valuable than most of what I've seen online.

Oh, and I wish I could get away with 6. I'm at 23. Still, I've gotten to the point where I don't have to "ramp up" the pressure.
posted by friarjohn at 12:53 PM on February 18, 2005

Two questions that come to mind as I try to catch up with this thread.

I tend to be a pessimist. Something I'm trying to work on, definitely, but nevertheless, I sometimes worry about things even when I don't have to.

I know each of you are sort of tethered to your own experiences, but does anyone have a sense of how common *NOT* having the rejuvination feeling is? Or how common aerophagia is?
posted by WCityMike at 1:13 PM on February 18, 2005

aerophagia increases with the pressure of the cpap. Lower pressures cause less, higher cause more. It's basically swallowing air as it's blown in. The cases above seem extreme to me, I noticed an increase in my gas passing, but nothing like cramping or waking up.

No idea on the rejuvenation issue, I'd guess it's between 30% and 10% based on the anecdotal reports I've seen. But seriously: don't go into this expecting rejuvenation. If you do, chance are good you'll be so let down that you will pass up on real, valuable medical treatment.

I try to explain to people why Sleep Apnea is so bad. I say High Blood pressure, falling asleep and people laugh at me. When I say "Kills people because they drive off the road (and potential kill other people), they tend to sit up and take notice.

Also: FWIW -- pessimism and worry are signs of depression and anxiety. Not that you have either, but both can be exacerbated by lack of sleep (duh). Regardless, they might be worth looking into independently. I didn't realize it until I got some counseling, but medical anxiety in particular is a symptom of generalized anxiety...
posted by daver at 3:16 PM on February 18, 2005

Mike, you definitely want to just focus on the fact that even if you don't see a dramatic, immediate impact, there are all sorts of other reasons that aren't so obvious, that are even more important.

You may or may not feel a night-and-day change when you start using CPAP, but if you've got sleep apnea, you're suffering on a lot of different levels, from blood pressure, to your inclination to exercise, to your ability to do well and thrive at work and in your personal life. This sort of thing has a real ability to spiral into a vicious circle, and where all the things like lethargy, weight gain and depression that can be a _result_ of apnea can contribute to being in a sedentary state that in turn makes it _worse_.

Whether or not you wake up feeling like you drank a hundred cups of coffee, breaking that cycle is something that just can't happen too soon. Start with the presumption that the _real_ advantages of going through with this are _not_ going to be immediately self-evident...the super-charged feeling is icing on the cake, but not something that happens for everyone. Whether or not you wake up all bright-eyed and bushy-tailed, though, if you've really got the condition, getting real rest is a critically important change in your life. Even if you can't feel it right away, it's probably the most important single step you can take in your life right now, if only because it stops you from taking so many others.
posted by LairBob at 3:31 PM on February 18, 2005

My sincere thanks to everyone who gave me very valuable help in this thread. I can't put into words how very much I appreciate it. I'm intending to stick around the Ask MeFi community, and hopefully here and there I'll be returning the favor.
posted by WCityMike at 2:15 PM on February 22, 2005