Your Personal CPAP Success Story - Post Here

[elmerF]

Just in case I get so wrapped up in my story, first let me thank you all for this forum. If cpap therapy ends up working for me, it will be because of this site.

I knew something was wrong. I was always tired, and my wife would say things like, “Hey, do you remember me punching you last night? I wasn't sure you were going to breathe again.” I talked to a couple of people with sleep apnea and they described the snoring and the interrupted breathing, but then they would describe going to a specialist and sleeping in a room full of cameras. Nope, not doing that, end of discussion.

Then I started to get morning headaches. I am not a headache person. I couldn't understand what the problem could be. Another friend with sleep apnea (there are a lot out there), summed it up for me, “Your brain isn't getting any oxygen at night.” That did it for me. I found a doctor that was willing to allow a home sleep study. It went well (data was collected), and I was diagnosed with moderate, just shy of severe apnea. The doctor prescribed an automated cpap (the Airsense 10), but that machine had to come through a home health care provider. Then the insurance hassle started. Fifteen days later the provider called and said I could come to their facility and pick up the machine, The message also stated that there would be no therapist, but I would get a DVD to describe how to use the machine. Well, I called back and asked about masks. They said it comes with a nasal mask, and any other type would have to be prescribed by the doctor. I'm a mouth breather, so round and round we went, till the provider and the doctor got on the same page, prescribed the full mask, and I finally picked up my machine.

The first night was a nightmare. I put on the mask, went through the Resmed preschool happy face mask leak check, and tried to go to sleep. Within half an hour I had a tornado in my mask, my cheeks were blown out like a squirrel carrying the winter's stash, and then the mask started a horrendous farting sound. I ripped the mask off, settled down a bit, and tried again with similar results. That was the end of it for night one.

Google found this forum, and I quickly realized that I actually had some control over the Airsense. I discovered the hidden settings menu, EPR, and Sleepyhead software while reading the posts on this forum. The machine had been set to 5 and 20 cm/w, and apparently without any baseline data it would ramp right up to max at the hint of a problem. Making slight adjustments, I slowly tamed the machine while reading the Sleepyhead reports. There really was zero support from the home health care unit, and long wait times to see the very expensive doctor - so you were my support.

I now have a Toshiba wireless SD card and I use Airpap to to pull the data into Sleepyhead while reading as much as possible about all the settings and other people's experiences. Resmed sends condescending preschool emails telling me I have achieved a silver trophy, not knowing, or caring that I did it despite them. I also bought a cheap recording oximeter, but have yet to successfully do a full night's study.

I am still having problems adjusting the the mask. I sleep on my side and get leakage problems plus my skin tends to itch around the mask as well as my nose. Slowly I'm making mask sleeping into a habit, and am trying to figure out how to adjust to the minor, but annoying skin problems. At this point I'm one of the people many people on this site that says they use a cpap and still feel groggy in the morning. Undoubtedly the grogginess is due to the fact that the mask wakes me up several times during the night with leaks and itches (I clean it daily), but the headaches are gone so I know it's doing good. I just have to adjust.

So, once again thank you all. It made my day when I read about pressing the adjustment knob and “home” button on the cpap machine to get to a menu that displayed something more than happy faces! I just talked to a relative that said it took him two years to adjust and believe, but he is now a firm convert to cpap therapy. I just hope it doesn't take me quite that amount of time, and with the advice and help from this forum I don't believe it will.

[scowell]

Glad I found this forum... helped me download the ResScan software, haven't had a chance to try it yet.

Five years ago, I was going nuts... couldn't sleep. I'm type 2 diabetic, so I went to my endocrinologist, thinking that my blood sugar was the problem... the PA said, 'no, silly, you probably have sleep apnea' and scheduled me for a study.

For my study, it was important that I got to sleep somehow that first night... or it would be *another* full night, two nights instead of one... really? That seems to be the norm, so when you go in, do everything in your power to get to sleep as quickly as possible. For me, it was a 1/4 bottle of NyQuil, my favorite pillow, and my little fan. There are wires connected to most parts of your body, including a full EEG cap with conductive goo. You are connected like a computer peripheral, via a big harness. How easy is it to sleep for someone that already has problems sleeping, connected up like Frankenstein? Believe it or not the fan was the biggest help, the tech said what a great idea, they didn't have a fan for me to use otherwise, and the white noise was great for hiding any other strange sounds (or lack of them!)

So you have to try to sleep without CPAP for the first few hours... I only managed about 55min, but the tech had mercy on me, I think I was supposed to get an hour's worth recorded. Turns out that I was waking up more than once a minute... sorry I don't have any other data for you.

Then they hit me with CPAP... out like a light. Tech said I went into REM recovery... the deepest sleep I've ever had. Next thing I know they're waking me up, it's 7am, and I have to leave! I had to wait two weeks for my machine... man, that made me angry, suffering for another two weeks... thanks, heartless insurance company.

Acclimation was easy... I turned off ramping after about a week, 10cm works great. One big tip... if you're winded, or out of breath, start out by breathing in through your nose, then out through your mouth (nasal mask here)... CPAP works by using the hose as a reservoir for your exhalations, so the slower you breathe, the more fresh air you're getting. If you're breathing fast, then you're going to feel like you're suffocating... so breathe out through your mouth until you catch your breath. The bigger mask and bigger hose seem to help too... I know the bigger hose (ClimateLine MAX) lasts at least twice as long as the normal one, since your breath doesn't go as far down the hose... and the bigger mask (Zest Lg) restricts the flow less. Getting the right mask makes all the difference, I was lucky that the second or third one I tried at the clinic felt good... but it even felt better when I moved to the large size mask.

Find a bedside table that is 4" below the top of your mattress... and butt it up right against your mattress. You *will* pull the machine off the night stand a few times... then you'll learn to manage your hose (wake up a little more) when you turn over at night. When you hear the gargling and feel the wet covers... just laugh, and know we've all done it before. It helps to hold the hose in your hands, so you remember it when you wake up to roll over or turn.

I used to have problems with reflux... for the most part, that's gone, Uncle Snorky keeps me inflated like a Heffalump. My sinusitis is better, the pressure seems to keep the swelling down. I like it in the winter especially, you can 'scuba dive' under the covers, from head to toe... this warms you up like an electric blanket, since your exhalations (and the humidifier/hose heat) are all trapped too. Most nights I just use a sheet, if it gets cold, I 'dive'!

Anyway, glad to find a community I can share with. Snork On!

[cmk17]

Dear All:

For as long as I remember, I've had insomnia. I say that I sleep like a baby -- waking up every hour or two and typically not sleeping at all after 3 am. Recently my memory started to fail. I work in a highly technical field where details and data and memory are keys to success. And I had to rely on experience because my memory was shot. In addition, I was told by my partner that I was snoring erratically and often not breathing for extended periods of time.

This August I had a home sleep study and was diagnosed with severe sleep apnea -- 30.5. I am a techie so I decided to study cpap machines and peripherals like they were cool new tech toys. Ergo I found this forum and started reading and studying and taking notes.

By the 3rd week of August I had a ResMed Airsense 10 Autoset For Her machine, with a heated hose and wisp mask -- all selected from reading this forum. (My algorithm was simple: the more people who like it, the more likely I will be one of those people.)

I have been using my machine since day 1 and have been sleeping 7 to 8.5 hours every night; only twice waking up in the middle of the night -- in more than 3 weeks. My AHI is now registering between 3 and 4 and I am feeling much better.

I have been using sleepyhead software from the beginning and noticed that around 3am every night (my magic hour!) I have 10 to 12 or more events. Most all the rest of the night is fairly calm and quiet -- but that single magic hour increases my average events/hour significantly.

First and foremost I am writing because I want to thank all of your for all of the information and stories and opinions that have helped me acclimate to the CPAP.

Second, I made changes to my setting based on your teachings. For example, I felt like I couldn't breathe when I first went to bed; I knew it was the RAMP (because of YOU) so I turned it off. Much better.

My range is set to the machine default 4-20... though my DME acts like he set it up specifically for me. I tend to dislike falling asleep to 4 and really feel comfortable in the early morning hours when it's between 10 and 12 or so. So my next step is to raise the lower range appropriately.

Which brings me to my last point -- what do I do about that magic time when my breathing seems to go wacko even with the CPAP (and minimal to no leakage)? Is there someone I can share my sleepyhead data with who can give me pointers about what else might be happening at that magical time (3am)? I don't (yet) understand what all the various and sundry charts mean but have been reading the fabulous documentation on sleepyhead to try to better analyze my situation. I'm at a loss and would love to hear some of your ideas.

In any case, I am here and paying attention and reading just about everything I can. Thank you again for all of your help!

Best,
cmk17

[jerlank]

I'm new to this forum, but an old hand at CPAP. Been using my trusted Fisher&Paykel SleepStyle 254 since 2010. I noticed that there might be a problem when I was nearly sacked for falling asleep at my desk. My wife did not want to be in the same car as me, because I would just "switch off". So I went to a cardiologist for heart check-up, and she scheduled an angiogram. They tried administering local anaesthetic, but it did not work, so they put me under. And had one whale of a time waking me up. She told me I just stopped breathing completely. And that I should do the sleep test. Organised it all while I stayed over in the hospital. Hooked me up to wires etc. The next night they hooked me up again, but this time with a CPAP. Resulting report showed 5-6 episodes/hour, up to 90 seconds per episode. O2 saturation fell to 50% during the episodes. Got my machine with a nasal mask about 3 weeks later. And fell in love with the feeling of sleep. Woke up the first morning feeling like a million dollars. Life quality has changed, health has improved, even weight loss! Compliance runs close to 100%, because I firmly state that I would rather sleep without my wife than my machine. Only times I slept without it is when we had power failures. For the rest of the time, I put on my mask, turn on my side, and wake up refreshed.

I am now busy sourcing a second machine, because the F&P looks like it is nearing the end of it's usable life.

Hope someone reads this and that it helps them.

[AirPlease]

Hello everyone!

I have had my apap for one week now, and am still getting used to it. It seemed like it took forever to get to this point - something like seven months between asking my pcp for a sleep study referral, to actually taking home my new machine. With all the delays, I had plenty of time to research machines, though, and was extremely pleased that I was able to easily get a ResMed AirSense 10 Autoset for Her from my local DME provider. They actually recommended it, without me having to push for it! Apparently I lucked into a really good DME provider; I was all ready to fight for "my" machine. I just laughed and relaxed after being handed my first choice of machine, and trusted that the rest of the equipment would be top notch as well. A heated hose was offered without prompting, and there was a lot of fussing to find a good fit for the mask. About an hour total, and I was told that I could have as much time with the provider as I needed to make sure everything was working for me.

Then that first night, getting everything set up - even though I understood what to do, it was still quite a production. I was pretty sure I would accidentally yank the machine off my nightstand, so I put it on a large plastic storage bin right beside my bed. The storage bin has a lip around the top, and it is lower than the height of my bed, so I both protected myself a bit from rainout, and from egregious machine abuse.

I have terrible allergies, and got a new HEPA filter for the bedroom, in anticipation of pushing a large volume of pollen and dust mite laden air into my lungs. A recipe for disaster, without that (painfully expensive) HEPA filter. I also have a white noise generator, as I find that I wake up easily with any kind of sudden noise. Interestingly, I can barely hear the apap; essentially no adjustment needed with that aspect of the experience.

Even though I have a heated humidifier attached to the apap, I think I might need more humidification - so maybe I'll add a room humidifier to the mix. Fortunately, I have totally bought into the sleep hygiene concept that the bedroom is for sleeping, so the decor is simple. I don't mind having all this equipment around me, if I can get quality sleep!

So, although there has been a learning curve, it's been relatively easy for me to adjust to sleeping with the mask/apap. I'm getting 5-6 hours of sleep per night, in two or three segments. What I have not experienced yet is feeling significantly less sleepy during the day. I may need to just give it more time, or, I may need to dive into the data and try and figure out if anything needs to be adjusted.

I love exploring and "detective work", so although I want to look at my data for my sleep quality's sake, I also am just plain interested in it all. Thus, finding this site.

I'm looking forward to exploring more, and learning more; I'm very thankful that this site exists!

[Dagmar]

Hi Everyone,

I've been on CPAP for about six weeks now. I found it pretty easy to adjust to and have only had one or two nights where I was a bit frustrated. My only real problem has been mouth breathing. I'm on my third chin strap and may have found one that works for me. I feel more rested and I'm better able to focus. I'm also taking 1/3 as much of the ED drug I've needed prior to CPAP therapy. That alone makes it easy to understand that CPAP therapy is beneficial to my health. I'm sure it's more of a challenge for people that don't feel the benefits of PAP therapy. Even if you don't see concrete improvement with your therapy, if you have OSA, your overall health will likely benefit from therapy. If you are new to CPAP just keep trying; and if you are having any problems-this board is a fantastic resource. I owe much of my success to the Apnea Board. 1) I have an autoset machine where I would otherwise have a "brick" 2) I learned about SleepyHead software and have had help with interpretation, 3) Peer to peer support network, 4) Helped me figure out which mask to ask for, 5) Nice people.

Thanks everyone!

Dagmar

[waterlady1200]

I was miserable and tired even when I woke up. I was groggy all day and could not keep my eyes open. I could not concentrate and was making a lot of mistakes. I almost fell asleep driving on a few occasions as my job takes me on the road. Being in my own business I had no health insurance, a typical problem in our country. I finally went to a pulmonologist I knew and told him I was quite sure I had sleep apnea. I also told him I was not insured and could not afford the sleep study. I described my symptoms of my throat collapsing cutting off my breathing that would wake me up many times through the night never allowing me to get into a REM sleep mode, loss of concentration, 24 hour exhaustion, and sadness. After a long discussion it was agreed there was an apnea problem. I was able to get a script and bought a Auto CPAP. I knew enough not to get the straight CPAP and even now can never understand how anyone can use those things. The doctor started me on low settings and titrated after reviewing the SD card information accordingly. Unfortunately, I could not get used to the mask. I hated that thing and kept throwing it on the floor. The first year was awful wasting money on masks that would keep me awake all night with the leaking I could not stop. I had given up until a friend of mine told me about nose pillows. I purchased one by Swift. It was still difficult, but not impossible. However, with prudence I finally was able to sleep part of the night. It actually took me a few years to finally sleep through the night. Now I can say thank God it works. I have a ResMed auto that is wonderful. I use nose pillows, but there are issues of dryness of the nasal passages that has caused me to be prone to nose infections in the forward area of my nostrils, but I have learned to apply a thin coat of vaseline in the inner nostril that i effective. It has been a long haul and finally I can use my CPAP auto and get a decent night's rest. I also bought a Transcend for travel and found it to be a real honey of a unit. I am amazed at its silence. I love that little thing, but it is not Mac compatible so I have to get a cheapo pc to get online to upload my information. For the Transcend I discovered an adapter that is an antibacterial/humidifier that works almost like my ResMed humidifier. I am so glad I spend the money for that unit. It fits anywhere and is great for travel. People can sleep in the same room and never hear it.
My heart bleeds for those who don't know about their condition and for those who have given up trying to get used to this treatment. I know there is an extremely high failure rate with this treatment and only wish they would seek an apnea specialist who could guide them along to success.
I now use a doctor who specializes in sleep apnea. He has an open house once/week for a few hours. His technician demonstrates various masks, how to adjust them, discussed different machines, and teaches apnea hygiene. They also explain the health risks of this dangerous diagnosis. It's amazing how many people have this problem.
I am just so happy I can finally say I am a successful apnea machine user. [/color][/size][/font]

[Uglidan]

So here is my story, I'm an ICU RN, and I work nights, have for 20 + years, (only 13 as nurse), so I sleep during the day of course. My kids complained about my snoring (they are home schooled and would hear me snoring downstairs) but my wife said that she had never heard me stop breathing, so I just assumed that I didn't have sleep apnea, and told the doctor for years that I didn't need a sleep study. Im a big guy, and getting bigger unfortunately, and have been working on trying to get smaller and control my diabetes, so I tried a new drug which I wont name here, and it was working, lowered my A1C 1.5 in three weeks. But I started to notice I was sweating much more than normal (remember the big guy part), and I would get short of breath walking on an incline, long and short of it is I ended up a patient in my own ICU. I had called in a favor from a Dr that is a friend (awesome pulmonologist that I work closely with)and she admitted me and started digging into my history. She came into my room and said that she couldn't find my sleep study report, and asked where I had it done so she could send for a copy of it. She smacked me when I told her that I had never had a sleep study (not too hard, there were too many witnesses).

That ended that, I was scheduled for my sleep study, I was nervous, I have issues getting to sleep, have for years (another reason I didn't think I had sleep apnea) and I figured this would be pretty impossible. I went though, didn't want the aforementioned to kick my butt, and I didn't sleep well, but I did fail the test, 29 events an hour, and my SPO2 dropped to 84%. A couple of weeks later I got my second study, played around with lots of masks, and ended up with nasal pillows for the test. We got rid of my snoring and got good REM sleep with a CPAP of 8, and I was on my way. I have now been using my Resmed AirSense 10 for two weeks, I ending up sarting with a Phillips Respironcs Amarra View, it's a full face mask, but very non-invasive. I have tried a different set of nasal pillows and they were very uncomfortable, then a nasal mask, that didn't even last 15 mnutes (I have few friends that are RTs and supplied me with the extras). I'm back with the Amara View, but have oredered a Fisher Paykel as I am having some side leaks that wake me up (we call it face farts in the ICU). I have adjusted my CPAP up to 9 as I was air hungry, and I have been 100% compliant with it, even if I take a nap.

I was honestly hoping to feel much better than I did before, but I am waking up with a much clearer head, and don't feel like I need another 12 hours of sleep like I used too. I don't think I am sleeping as deeply as I will when I get used to it, and I am really hoping to start having more energy so I can get my fat butt moving more and maybe make it not so fat. I am planning on downloading SleepyHead when I get home in the morning and see what it sees, the MyAir dashboard doesn't give me as much info as I would like. I am happy that I found this site, it has already helped me (I've been here quite a few times before I joined tonight) I wouldn't have known how to change the settings without this site. I have found that the RAMP makes me very air hungry, so I turned that off. Now to just find a pillow that holds my head without trying to push off my mask.

[MtFallsTodd]

Hi everyone,
Been checking out this sight for awhile and figured I should join. Been on cpap for 2 years now. Visited my Dr for severe daytime sleepiness, no energy, and uncontrolled weight gain. Had a sleep study and was diagnosed with severe OSA. 122 events a hour. Was given a cpap set at 14.5 , a nasal pillow mask and sent home without much more than a quick how to from my equipment provider. Extremely difficult transition period but stuck with it and started to sleep more than a few hours a night. After about 45 days I started to notice a difference in the way I was feeling during the day. The best thing I noticed is my appetite started to ramp down out of high gear and I started losing weight. I started to feel week enough that I got back into working out and jogging. A year later I was 80 pounds lighter and feeling great. I decided to take the next step and bought a PRS1 auto and slowly tweaked in to work for me. I now sleep 7 to 8 solid hours a night a have boundless energy. I'm not going to say this was an easy process but it has been worth it. As soon as I get out of newbie status I will give a review on the Dreamwear mask. Got a free one to review from my provider and so far it seem great!!!
Later,
Todd

[DariaVader]

great results!