Who else uses CPAP?

In My Humble Opinion
21

Going on nine years now. Started with an Adams circuit and moved to a Breeze a couple of years ago.

Yep, I’m overweight, though working on it. My number is 11, but I don’t remember how many episodes an hour. Enough that the insurance company paid for my machine. When it broke down a couple of years ago, they paid to fix it rather than buy me a new one with a heated humidifier. Buggers.

I have taken it with me on numerous trips, including once to Washington, DC and once to England (with appropriate converters). I have never found a hotel room without an appropriately-placed plugin (Though I always carry an extension cord, just in case).

It is wonderful, and I would not be without it. My only forced absence was last month after I was bitten on my nose, a slashing bite that required 7 stitches in the emergency room, and the doc said no CPAP for a week. I had to sleep semi-sitting-up in my recliner. Not much fun, but I made it through.

Yeah, it’s annoying at times. I go to bed well after my wife is asleep, and sometimes the headgear that is resting on the pillow gets knocked behind the bed, and I have to get a tiny flashlight, hood it well, and go crawling under the bed to retrieve it. Sometimes the humidifier — merely an unheated plastic water compartment like a horizontal radiator which fits under my Sullivan machine — gets mold in it. There’s no way to reach inside and clean it, so I put handfuls of uncooked pearl rice in it with water and shake it up many times, finishing with a small bit of bleach in water shaken thoroughly, followed by several more rinses. This happens maybe once every year to 18 months, so it’s not so bad.
Every third day i have to add some water to it, but a gallon of distilled water is 89 cents and lasts a month.

For adjusting, I lie down on the bed before bedtime and fuss with it every couple of weeks to “retune.” That way it works fine when I come in later and my wife is asleep.

Some people get claustrophobic. I think I might get that way if I had a mask rather than the nasal pillows. With these, If I need to sneeze, no problem. Might not be that easy with a mask.

22

I wore Oxy masks for years doing aerial mapping so the mask was not a problem. Put it on a couple of years ago and use it every night since. I have the ‘over the nose’ only. I have a full beard. I am set at 13 I think. I have a humidifier but I like cool air so I put ice cubes in mine and do not turn on the heat.

In the hot summertime without A/C I would need to refill the ice after about 5-6 hours but we do have A/C so it is not a problem.

I got it so my wife can sleep. I snore real loud. :smiley: I needed it anyway judging by the sleep studies…

23

Had mine for about a year now. My apnea is diagnosed as severe, so I’ve noticed a huge difference in my quality of sleep, and how I feel during the day. I have a Resmed S8 Elite, with a Mirage Activa mask. I was going to try the nasal pillows, but I’m told they’re less reliable at higher pressure settings (I’m a 14).

I worked in a steel foundry for years so I was no stranger to wearing a mask, and I think that helped me adapt. A friend of mine who got one around the same time still can’t sleep the night with his.

24

yanceylebeef, I’ve read a few articles recently about having surgery to correct the various structural defects that contribute to sleep apnea. They all showed that only 10-20% of patients got total relief. Even weight lost for many didn’t get the “raccoon”* off their faces.

*from RickJay:smiley:

urban1z, thanks for the praise for the Breeze. It’s pretty comfortable, but it seems to bee cheaply made. I’m afraid I’ll break it.

Not a Platypus, I have trouble with “rain out” too. (that’s what we medicos call it.) We like the room cool when we sleep. I sleep on the side of the bed with the open window, so my side is anywhere from 10 to 15 degrees cooler than hubby’s side. His doesn’t rain out, mine does. The other factor is my pressure is much lower than his, so the aerosol droplets are smaller for him. He has to refill his every day, mine lasts for 2-3 days. I tried covering my tubing, but the Breeze is so light, the covering adds enough weight it pulls off my head. Maybe I’ll put a bonnet on to hold on the head gear. (NOT!)

Ok, my next question is more frivolous. Do you have a nickname for either your machine or headgear?
We call it a nose hose. I’ve embarrassed myself by using “nose hose” instead C-PAP in conversation with my doctor. She laughed, but sheesh.

25

Tomorrow I’m going in to get a different mask. I doubt I’ll be able to fix the condensation, since I won’t give up my nice cool room, but hopefully I can fix the waking every 2 hours to fumble and fight with my face. Honestly I feel worse than I did before I got it!

Oh, and I call my machine/mask “my face” (no connection with Watchmen). It makes me giggle inside.

26

I’ve had mine about 11 years, I think. I use a full-face mask because I just can’t breathe reliably through my nose (allergies, sinus, or whatever).

I remember the first night I used it (and the first one was a horrible affair with one strap across the back of the head, and to keep it in place I had to ratchet it so tight that I thought it was deforming my skull). I think I slept through the whole night without moving once - what a contrast with before the CPAP, when I used to wake up and feel like I had to pee about 8 times a night, and snored like a buzzsaw. I guess I had apnea really bad (and had had it undiagnosed for a long time) but I have never known the details of my test results, nor my prescription.

I would like to not have to wear it any more, but I don’t think that’s ever going to happen. I was way overweight and then lost about 150 pounds, so I went to get another sleep test. I still had apnea episodes if I slept on my back, but I was ok if I slept on my side. Trouble is, I can’t stay comfortable just on my side all night long. So I continue to wear the mask. As someone mentioned, it is a sleep trigger too, so if I ever try to sleep without it, I have trouble falling asleep.

I don’t use a humidifier because I can’t be bothered with the constant cleaning, and anyway I don’t think I need it. I get a little dry mouth sometimes, but as long as I stay properly hydrated it’s quite manageable.

The worst thing, in my opinion, about this whole situation is the supplier. The first one was completely incompetent (I was on a business trip and hadn’t packed well so I broke an important piece of the mask; I called them for a replacement, they asked me “what kind of mask do you have” I said “don’t you have me on file there with that information?”. So they sent me a nasal mask that I couldn’t use. Then they said they were out of stock of the mask I needed. I went out and spent a couple of hundred dollars of my own money so that I would be able to sleep on this 2-week business trip). The one I have now is just arrogant. I take what they give me and like it. They don’t sell parts, so if I need a new strap, I have to get the whole mask. I hate them.
Roddy

27

I’ve been using a CPAP for a few months now, since November or December. I still find it uncomfortable. I didn’t use it for about 6-8 weeks, because I had an abscessed tooth, and the mask edge pressed against that tooth. Yeah, I went to the dentist promptly, but it took a while for the abscess to clear up. I also had a sinus infection at the time, and of course I couldn’t wear the mask with that going on. I have a full face mask that covers nose and mouth.

One of my major complaints is that I didn’t get a heated humidifier. Most of the time, I don’t need warm air, but I do sometimes. Especially when I have a sinus infection in the middle of winter.

It’s starting to become a sleep trigger for me. I use it because I do feel much better rested when I use it.

28

I did the sleep study about four years ago I guess. I think they said it was mild-moderate apnea. The mask that fitted around my nose was super uncomfortable- I always felt like someone was driving a fist into my face. I switched to the nasal pillows and after I adjusted they were not too bad. I wore it pretty steadily for about a year, but got out of the habit of it and haven’t worn it now in a long time. I keep thinking I should start using it again.

29

I had my first sleep study about 3 weeks ago. If I remember correctly they said that I was around 100 episodes an hour. That can’t be right can it? I go for another one tonight where I’m told that I will be using the CPAP machine, and they will be adjusting the levels to get the settings right.

Should I expect to (buy out of pocket, get via insurance/prescription?) one of these machines to take home this evening? Or will I have to wait until later to actually get the machine?

The first sleep study was one of the worst nights of sleep I’ve ever had. Between the hospital bed, the head full of wires and the fact that I’m being watched and monitored while trying to go to sleep it was not easy to fall asleep or stay asleep at all. I can’t imagine that the addition of more crap strapped to my head will make tonight any better.

30

I was having about 100 episodes an hour too, so it’s not unheard of; I was a bit surprised myself, because I wasn’t aware of any of them - no “waking up gasping for breath” memories.

What you’ll pay will depend on your insurance company. Your doctor will probably have to write up a prescription based on the sleep study report. The place that did the sleep study won’t be providing the CPAP machine. I can’t remember who did the referral, but I got mine from Apria, which presumably chose the machine and mask they felt was best suited to my needs. I was not offered a choice of masks, but didn’t have any problem with the one I got. My insurance company (BCBS) had me originally leasing the machine, I presume in case there was some problem with it, but it was a “lease to own” arrangement, and after three or six months I was billed for my portion of the total cost. BCBS also covers annual replacement of the mask if needed.

31

The way it worked for me was I had one sleep study to see how I am normally, a second study to figure out my settings, and then once they got the results they called me to set up an appointment with their DME office, which is when I got my mask. After I got my mask I set up another appointment about 4 weeks out to follow-up with my doc.

I was thinking the same thing about the second one not being any better, but it was! Sure it’s more stuff on your head, but it’s stuff that should help you sleep easier. Plus, you know what to expect.

Don’t be surprised if you have to go back one or more times to try different masks. I just got back from my appointment to get a second mask, and I should have gone back after the first week went poorly. If what you get isn’t working out for whatever reason, don’t be like me and assume it’ll get better… go get it fixed!

32

I’ve had mine for a year or so, but I needed it a year before that. Took them a year to get me a diagnosis and equipment. Bleh.

I had to go to multiple doctor’s appointments, telling them how unusually tired I was. I was sleeping 15+ hours a day and listless and falling asleep all the time, and I was told a bunch of brushoff crap at first. Drink coffee. Etc. It was crap. I went to the ER crying exhausted a few times because nobody was doing anything or listening to me, and I was desperate to find out what the hell was wrong with me. I just couldn’t stay awake. I was falling asleep standing up, at work, doing random things at home. It was dangerous.

Finally I got put on a six-month waiting list to get a sleep study done. I almost got fired from my job due to falling asleep at work while I waited for my sleep study.

Got the study, waited another two months for the machine. From the day I got on the CPAP, I started feeling better immediately.

Before then, I had severe edema, and after I started on the CPAP it completely vanished. I dropped a chunk of weight. Before, if I didn’t wear it every single night, I felt awful. Now, if I skip nights (I probably shouldn’t, but my sleep schedule is ridiculous with what hours I work), i don’t feel tired or sick. I might be able to get off it completely in the future if I lose some more weight.

I wear a full-face mask. The machine was originally rented, but then my insurance bought it outright from the company. I do have problems from time to time where I take the mask off in my sleep and don’t realize it.

I’m 27 and female.

33

Of course after I say that it’s a sleep trigger for me, and I sleep much better with mine…the mask develops problems. The hose won’t stay attached to the mask any more. I did call yesterday morning, and I’m eligible for a new mask, but I have to wait for it to go through insurance. Grrrr.

And it’s hard now to go to sleep without being a hosehead.

34

I got my new mask Friday, and so far I like it! I’ve slept through both nights without having to fight with it at all. The condensation is annoying (drips onto my face around my mouth) if I’m on my back, but I don’t notice it at all on my side. I think it just collects on one side then, and gushes out all over my lip when I roll over… exciting way to wake up.

I can already tell a difference.

35

In response to picunurse’s question, I’ve always call it my Darth Vader rig, but “nose hose” has a certain attractive rhyming symmetry.

My brother-in-law used to work at the sleep lab, and I would volunteer to sit in a sleep lab booth at our annual health fair wearing my mask and answering questions. (The machine wouldn’t be turned on. except to demonstrate, so I could talk to people with questions.) Most of the time people would really appreciate a straight answer from someone who had used one for years.

36

Been using one for going on 10 years now. Unfortunately, my old one died on me 2 weeks ago, and the new one… Well, I think it just doesn’t have the right settings or something. Doesn’t seem to be helping as it should. I’ve put in for another sleep test so we can adjust it to what it needs to be, but the earliest test isn’t for 3 weeks, so I get to be miserable until then. :frowning:

37

Do you use a humidifier? You might have to adjust the settings down. I tried a full face mask for a bit, and when I switched to just a nose mask, I had to dial down the humidity setting drastically.

38

SY,
You’ll know if you need to get your CPAP adjusted when you wake up in the morning and have to burp a lot. At least that’s the way it was for me. Once I didn’t need the CPAP forcing so much air into me, it more or less just made me bloated. I’d wake up in the morning with a full gut full of air. I’d burp 3 or 4 really good burps, and I’d be fine.

39

I have it set to the second-lowest setting. I’m going to try putting it as low as I can, and we’ll see how that goes.

40

Interesting, thanks. That has not happened yet, but I’ll keep it in mind.