Tell me about your sleep apnea treatment

In My Humble Opinion
21

I’m amazed at how many people have been diagnosed with this problem. I am a world-class insomniac. I was diagnosed with sleep apnea over 2 years ago, and the CPAP machine has not made a big difference. The big problem is me. I usuallly throw the mask on the floor in the middle of the night, not realizing it until the next day.

One thing that did help was switching masks. I found that using a mask that only covered my nose and not my mouth forced me to sleep without breathing through my mouth, believe it or not. I guess it is the pressure of the air being forced into my nose mask that somehow keeps my mouth closed. This mask is a big improvement over the full face mask that NEVER made it through the night. I felt like I was suffocating with that thing. It took me a while to get over the look, but my vanity took a back seat to the hope of a good night’s sleep.

I still struggle with the cpap machine, and my test results have been somewhat screwed up because since I have so much trouble falling asleep, I had to take two 10 mg ambiens to help push me over the edge during my overnight sleep study in the hospital. The nurse told me that if I didn’t fall asleep at all, they wouldn’t be able to get a reading. Fair enough, but knocking me out with ambien wasn’t the best solution, imho. This was my second test. The first went much better in that they were able to get a better reading, but I apparently wake up over 100 times an hour or something crazy, so I need some help.

I’m dubious of the long term solution with the CPAP machine, simply because the mask ends up on the floor almost every night. So I may have to look at other options.

I wish you all the best. If you can get used to the mask, I hear that the improvement in your life is well worth it. For anyone that has had surgery, if you could give more detailed information on the procedure/recovery, I’d love to hear about it.

I’ve been considering it. If you don’t mind, can you give us an idea of your age and how painful the recovery really was? After the procedure, are you now completely independent of the CPAP machine, do you use any sleep meds to get you started, or were their any complications from the surgery that you experienced?

Thanks. Great thread for us apnea sufferers.

22

I’ve used a CPAP machine for a number of years now since I was diagnosed with OSA. I got used to the machine very quickly. The quality of my sleep was so dramatically improved that I don’t even like to sleep without the machine.

Getting the most comfortable mask you can is important. There’s an even wider variety of designs available than when I got my first one. If you toss and turn, though, pay attention to whether the mask will intefere with your movements and will hold up over time. The type where the tube goes up and connects at the top of your head seem to work best for this.

The machines have also gotten much quieter and smaller in recent years. I recently stayed in a cabin in the woods with a new CPAP user. His machine was nearly inaudible except for a slight increase in volume when he switched from breathing in to breathing out. I notice there are machines available with optional builtin battery packs, too.

CPAP equipment is much easier to find than it used to be, as well. There are several on line sources so prices are quite competitive.

You do have to keep your mouth closed, but for me this was a benefit of the machine. Before I got it, I would sleep with my mouth open and awaken with a dry mouth. Now, since I can breathe more easily, my mouth just wants to stay closed and I wake up without that mouth full of cotton balls.

Many users find CPAP more comfortable with the addition of a heated humidifier. When I got mine, the humidifier was a clumsy, separate unit. Now many machines have the the humidifier built in.

A note on surgery: when I was diagnosed, I was told that surgery (I think uvuloplasty was the option) was sufficiently effective on only 50-70% of cases. The problem, according to my doc, is that in a high percentage of cases where surgery doesn’t help, it changes the anatomy to the point where CPAP is not very effective either. CPAP is low risk, reversible, and much less expensive than the surgery. Unless your doctor says otherwise, I’d recommend giving it a fair trial before going the surgical route.

Generally speaking, ambien or any sedating substance will aggravate sleep apnea since they supress the urge to breathe, but only your doctor can tell you whether ambien is contraindicated in your case. Obviously, there’s a balance to be struck between your apnea and other factors that may be interfering with your sleep.

My take home message for you is not to be afraid of CPAP. It’s not horrible torture and many of us find that after several days’ adjustment, it’s almost pleasant. Good luck!

23

First of all, attitude is everything with a CPAP. You’ve already started out with a negative one, and that will make the machine less effective for you. That is the first thing you need to fix. Do you want your sleep problems to go away? This is something simple and non-invasive that will help. How can you hate something you haven’t fully tried yet?

My dad died at the young age of 57 of a heart attack. A few years later, we started hearing about this condition of sleep apnea, and how it can contribute to heart attacks. Looking back at my dad’s history of overweight, high blood pressure, and stopping breathing when snoring…loudly…we figure his undiagnosed apnea contributed to his death. So when my daytime sleepiness, constant waking up for the bathroom and my kids’ reports that I stopped breathing while sleeping became too much to ignore in the light of my high blood pressure and overweight situation, I went for the sleep study.

I can’t remember the numbers. I didn’t really sleep much during the first study, but enough that stopping breathing over 50 times was frightening to me. I slept more during the second study, and got my machine. I had two friends who already used one, and they raved about the improvement, so I was very eager to get going with the machine.

The first time I tried was a disaster, and I was afraid to try again for a week, depressed and angry with myself for letting a few difficulties prevent me from getting better. So I started using the machine for short periods during the day, maybe 10 minutes at a time when I wasn’t exhausted and trying to get to sleep, to get used to the mask and what position I’d have to sleep in and the hose placement… that strategy worked, and I soon had my first full night’s sleep in say, 15 years.

Once I had that great night, I was hooked. The machine became my friend…put it on, go right to sleep, wake up in the morning refreshed. No trips to the bathroom at two and four. No falling asleep at stoplights… Yes, sometimes I yanked the mask off at night. Sometimes it shifted position and woke me up. But in general, it is such a blessing I can’t rave about it enough.

The mouth-closed thing is not that big a deal. Your mouth will stay closed, and if it opens, there is a pressure change, yes…but it doesn’t hurt and you close your mouth again and it’s gone…nothing gets sucked out of you! And in the years I’ve used the machine, I’ve had such a significant decrease in colds and congestion…it’s amazing. If I even start to get a bit stuffed up, using the mask helps open things back up…that requires a teeny bit of determination and patience (maybe ten minutes) but it is so worth it!

I’ve since had another sleep study, with Ambien (because I just can’t fall asleep in strange places) and a gastric bypass and lost over 100 pounds and I no longer need the machine. I just realized I haven’t used it for over two months, and I don’t snore anymore, and I can sleep through the night without it. But in the past week I’ve been drinking so many fluids due to the heat, and waking up to pee, that I’m going to hook up the machine again so I can sleep until morning. The machine is comforting, and effective, and I believe it has helped to save my life.

So work on changing your attitude about the whole thing. Yes, it takes time to get used to. Yes, you may have to change some things about your sleep position. You shouldn’t need to use Ambien every night…doesn’t that alone scare you? And that gets expensive! Why would you even want surgery for something so easily fixed? Try to figure out why you hate the thought of the machine so much, and work on readjusting your attitude towards it. How old are you? It can be scary at a young age to realize your health is compromised and you need assistance, but the scarier thought is dying young, or living a life so exhausted that you can’t enjoy it.

24

I can’t dispute anything you say, kittenblue. My attitude is indeed a problem, but I think I came by it honestly. I’m 45. Part of my resistance is rooted in the concern that the CPAP is just one more barrier between myself and a satisfying romantic relationship (although the snoring is certainly another). Another part is a close friend’s mixed-bag experience with the device, and my suspicion that the CPAP contributed to his recent divorce (but God knows there were other, more significant factors). His experiences with the machine are definitely of the “I find it on the floor every morning” variety, which anecdotally sounds pretty common. I’ve never used Ambien, BTW.

I was pretty close to getting my uvula and soft palate removed, when suddenly my employer changed health care providers and the decision was taken out of my hands. Maybe that’s for the best, as the old doctor soft-sold the potential consequences of the procedure.

I’ll try to have more of an open mind about the CPAP, though.

25

My husband sleeps with a CPAP. It has made a moderate improvement in the quality of his sleep, and a great improvement in the quality of mine. I’d rather hear the white noise of the CPAP than his snoring. His snoring is not the classic window-shattering noise but rather an annoying loud breathing sound that gets louder until he stirs and repositions himself, then it starts again. It’s worse when he sleeps on his back and I would spend most of some nights prodding him (more and more viciously as the night wore on) to roll back over on his side.

With the CPAP he occasionally moves into a position where it makes a whistling noise and I have to poke at him to roll over and re-adjust it.

One problem is that he also suffers from frequent sinus problems, and he can’t use the mask when he is feeling stuffy. He did have surgery to correct a deviated septum and to put windows in his sinuses. The surgery was done mostly because he had lots of sinus infections but it did also help a little with his sleep apnea. His recovery from that surgery was not bad at all; not nearly as bad as we were expecting.

At the time he was diagnosed with sleep apnea he was perhaps very slightly overweight. He was told that surgery to remove his tonsils and other tissue in his throat would probably not help him very much.

26

I’ve been wearing a CPAP for about 5 years for severe OSA (close to 100 episodes a minute in my sleep study). It’s unattractive and occasionally uncomfortable, but I can argue with the improvement in my quality of life. Not only do I feel better in the morning and all day, it also eliminated my high blood pressure. It also allows my wife to get a good night’s sleep because I am not snoring.

I’m overweight but am currently slimming down (about 16 lbs so far, 34 lbs to go). I’m hopeful that I won’t need it if I lose the 50 lbs but even if I do, I wouldn’t part with it. I just can hardly sleep without it now.

27

I’ve been wearing a CPAP mask for about 4 years. I have one of the ‘nose only’ kind. It works great for me. If you share a bed with someone there can be problems, but less problems than you snoring.

I really like the fact that I dream again. I had stopped dreaming or I really couldn’t remember my dreams or they were very fragmented.

28

Preach it.

I went to my doctor complaining that I had trouble falling asleep, because I’m always twitching and have this horrible crawling sensation in my joints. It feels like what people call “restless leg disorder.”

So I went to the sleep study and they announced that I have sleep apnea. Oh yeah, real bad, you betcha.

Here’s the thing; I DON’T have daytime sleepiness. Not in the slightest; I feel every morning like I’ve gotten a fine night’s sleep. I wake up chipper - I am wide, fully awake pretty much instantly - and go all day. Don’t need to slam back a pot of coffee. Don’t feel drowsy during the day. My problem that I went to the doctor for was that I just have to spend an hour getting there before I nod off and my twitchiness drives my wife nuts - but once I do I sleep fine. I snore, but not much, and my wife insists she’s watched me sleep and has never seen me do anything like what sleep apnea is supposed to look like. No breathing stops and all that.

So I tell the doctor all this and he just ignores me. When he asked “How bad does the fatigue get during the day” and I said “Er, not at all. I feel fine during the day,” ten minutes later he tells me the CPAP machine will help me with all that daytime sleepiness I’d just finished telling him I did not feel.

So they send me back for a sleep study with the CPAP machine; I do this basically because if I do I figure the doctor can’t complain I didn’t cooperate. Well, the day I get to sleep with a CPAP machine on my face is the day George W. Bush converts to Hinduism during a State of the Union address. It was preposterous. And of course I’m still fucking twitchy and restless with the goddamn RLS thing, and the mask makes it ten times worse.

Sleep apnea is a serious problem for many people and the CPAP machine can work wonders, but it’s become the E-Z diagnosis for all sleep problems and frankly I need to find a doctor who’ll actually help me with the problem that’s hard to solve.

29

I understand your being bothered, but I’m afraid I’m with your doctor on this one. Not meaning to be rude, but 80lb (~35kg) is a fair bit and, well, when I’m diagnosing a computer problem and I find a 90% probable cause then I stop looking too, until that is shown not to be the problem.

30

Bizarro on the sleep apnea thing. Maybe it’s worth a repeat sleep study at a different sleep center! I’ve had three, of varying degrees of quality. One at a local hospital (joke, joke, joke, I slept hardly at all and had to holler for 20 minutes when I needed to go to the bathroom, after earlier incidents in which the attendant popped into the room ever time I moved a muscle), one at a major medical center (better but misdiagnosis: “hypnotic dependent disorder” which is related to overuse of sleeping pills… never mind that I’d never used them at that point so whatever my problem was, it literally could NOT have been that) and one at another major medical center (better… though they urged me to let them do an esophageal tube to measure godonly knows what and seemed to think this would not be all that uncomfortable and I’d easily be able to sleep and I said they were out of their fucking minds). All three locations seemed to be surprised that anyone could have trouble falling asleep in a strange, uncomfortable bed with stuff stuck pretty much everywhere. Sleep clinic staff and doctors live, in my universal experience, in a completely alternative plane of existence. And none of them caught the intermittent sleep apnea that I know I have.

However, I do have significant daytime sleepiness. From your tale and mine, diagnosable sleep apnea must be inversely tied to daytime sleepiness :slight_smile: (actually mine is known to be due to RLS, which by the way can be quite treatable I’ve just been too d*mn stubborn to start the medication).

May be time for you to doctor shop - I think a LOT of RLS patients have trouble getting a correct diagnosis.

31

No, I’m fit and not overweight. I also don’t snore regularly. Yet I have moderate to severe sleep apnea and the lowest oxygen saturation I reach - both in REM and non-REM sleep - is 74%, which is very low indeed. I have a combination of obstructive and central sleep apnea.

I don’t think I’d consider the surgery. It sounds awful and the odds aren’t great that it even works.

32

Interesting. Have you always had it, do you think, or did it develop at some point in your life? If the latter, anything significant happen in your life at that time?

But basically is sounds like you just have an unfortunate shape of tissues in the affected area. If so, then surgery is indeed a likely answer (the bad odds for surgery you mention would cover attempts to fix apnea caused by such things as being overweight and excessive drinking which should not have been treated by surgery in the first place).

33

I think I’ve always had it. I know I wake up repeatedly during the night. I also have bad “delayed onset” sleep = insomnia. Badly need a nap in the afternoon (called a siesta here in New Mexico…). I’m really hoping the right CPAP machine is going to help me sleep much better and to get up refreshed. What a nice thing that would be!

34

The CPAP finally arrived in the mail a week ago. Nose-only, no humidifier, no exhale valve. I have yet to fall asleep with it on. Clue me in here: Should I be exhaling through my nose or mouth? If I can make this work, I’ll get a lot more enthusiatic about it.

Also, the higher settings seem to dry out my sinuses, so I keep it on a pretty low setting. Is this a mistake?

35

No, you don’t exhale through your mouth. Your doctor should have prescribed the setting. Your doctor - or the company that provided the CPAP should have given you instructions and coached you on how to use it. Go to www.sleepapnea.org and there is a forum where you can ask questions about CPAP use and sleep apnea.

36

A non-surgical suggestion for those with obstructive sleep apnea:

Take singing lessons.

I’ve never been diagnosed with sleep apnea, but I know that I snore at least a bit, and I noticed I was starting to have trouble occasionally choking when I drank something. I started taking singing lessons for fun and within a few weeks, the training strengthened the muscles of my throat, mouth, and palate significantly. I suspect that the soft tissue just doesn’t hang about like it used to.

Besides which, if it doesn’t work, you still get some vocal training out of it.

37

IANAD but I was just at a training for psychologists given by a sleep disorders MD. He said very clearly that Ambien and similar medications cause the throat to relax and therefore increase the possibility of sleep apnea.

38

I keep my mouth shut and exhale through my nose. It took me a while to get over the idea of “pushing” against the CPAP when I exhale, too.

39

Bumping this thread:

I’ve always been a terribly loud snorer and almost always wake up multiple times each night, but only recently realized that I probably have sleep apnea and that it’s probably moderately-serious or even more. I do have 27 days of free time before my next job begins (currently unemployed but got a job offer.) Anyone who’s gone through the experience know if it’s possible to see a doctor, get a sleep study, get a CPAP, and get everything cleared away in just four weeks’ time? I also have HMO insurance only (via ACA), which may make it hard or impossible to get a sleep study done by a specialist unless I first get some sort of referral. Plus, these sleep doctors may be booked for weeks in advance.

Also, has anyone ever tried bringing their CPAP in luggage on an airplane or ship? Does TSA usually object to it?

40

The hard part of a 27-day deadline is getting in to see a sleep specialist in the first place. Mine had a five-month wait list. Assuming approval by your HMO (and a referral to someone in your network) AND a miracle and you get in to see a specialist, they will either schedule an overnight study or an at-home one. I’ve had both. The overnight study is more comprehensive but it will require another appointment. If the doctor decides to start with an at-home study, they might be able to set you up with the equipment and you can do it quickly. The diagnosis of a home study is pretty quick and dirty, and if the doctor decides you need a CPAP, you’ll get a prescription for it and hopefully a list of providers that will accept your insurance.

TL:DR - you could do it in theory but every star in the universe would have to align perfectly.

As for traveling on a plane, you can either pack the machine in your checked luggage or bring it in its own little carry-on bag. TSA will take a good, long look at it, but they’ll let it through. Just in case, pack the instruction manual with the unit.