Your Personal CPAP Success Story - Post Here

[PsychoMike]

I've been on CPAP for about 18 months now....started off with the original settings from my titration and was doing well (I'm actually a UARS patient....it's related, but doesn't have the big blood oxygen desaturations....my brain wakes up quick to get me breathing again...same sleep disruptions, just slightly different symptoms during the sleep study).

My tweaking and looking for the "best for me" therapy has certainly paid off. It took some adjustment to therapy and then a desire on my part to get the most out of it, but it has paid off (so stick with it if you're new to therapy).

I am going to toot my own horn a little: my diagnosed RDI=50 and AHI=6 (50 sleep disruptions/hr with 6 actually being long enough to desaturate to the point of being an apnea event) got down to an AHI=0.46 under the original treatment plan (so probably an RDI=~5 considering the original ratio). That was good...

As of now, though, with some tweaking of the settings and finding "the one" mask for me, my AHI for the month is sitting at 0.1 and the week at 0.06 with the numbers continuing to drop down a bit as I get more data with my new mask. I don't think I've ever slept this good and I know my wife has noticed a difference.

I know those numbers look impossible to some on the board, but of course, my diagnosis is a hair different. Even so...stick with it and be your own advocate: if you want the best sleep you can get, don't settle for "good enough", work it

Happy sleeping all

[ismaelderruci]

Hello everyone!!!

I'm from Brazil, my brother has sleep apnea and has been using the cpap for three nights now.

IT'S A F*CKING MIRACLE!!!!!!!!!!!!

He's 45 now and has had apnea his entire life. And I suffer with him because he used to "sleep" for 18 hours a day in average, he had no life, no friends no job.... every time he went to "sleep" it was pure agony, he would stop breathing as soon as he fell "asleep" and pretty much struggle for a breath every time. I couldn't sleep too 'cause I felt I had to "watch" for him at nigh, sometimes I thought he was going to die.

But now I hope it's going to change because of that miraculous piece of equipment.

I encourage everyone to keep using it, if you're having problems don't give up!

I found a lot of information in the forum that will help me take care of him, so thank you all very much, and I'll be here to try help whoever might need anything!

This forum is awesome!!!!!!!!!!

[retired_guy]

Thanks for stopping by Ishmael. Good on you for taking care of your brother. If there is something we can help with just let us know.

[GreatBlueWhale]

I had snored most of my adult life, but didn’t really think much about it. It may have kept others awake, but I thought I was sleeping just fine. But in the late 1990s, something changed. My energy was flagging too early in the day. Headaches in the morning became the norm. I found myself napping, for the little good it did, almost every time I sat down and was quiet for more than a few minutes. And it just kept getting worse and worse. I just couldn't stay awake, and when I woke up, I felt more tired that when I went to bed. There were hardly any areas of my life that weren't negatively affected.

When my wife mentioned that I stopped breathing when I was asleep, and I started falling asleep at red lights, I went to my doctor and told her we had to do something. Her husband was an ENT guy, so she sent me over to see him. I was scheduled for a sleep test that week.

I was “asleep” for about two hours when the sleep tech woke me up and had me put on a mask. He said there was no doubt in his mind that the doctor would diagnose severe OSA, and we’d just as well figure out what pressure we needed. I slept the sleep of the dead for the next five hours, and woke up ready to fight (and whip!) the world. About an hour after I got to work, my cube mates wanted to know just what I had taken, and where they could get some of it. I had a follow-up appointment a week later, received my diagnosis, and was told that a CPAP machine was ordered, and my pressure was going to be 14.

Six weeks later I got my CPAP machine. Between the DME whose personnel were clueless, and my insurance company that limited me to that one company in the entire metro area, I was ready to take a club to someone to get my therapy started. But oh, when it did…

I’ve used CPAP for the last 13 ½ years. There is no doubt in my mind that had I not been treated for my OSA that I would be dead today. My wife thinks so, too, and she’s been an RN with nearly 40 years of experience. She told me she figured I had maybe three years left to live just before I began CPAP

I have used the Breeze mask with nasal pillows the entire time. I’ve used continuous pressure ranging from 14-19, depending on my latest titration. I picked up an F&P Icon+ this morning (10-20 Auto), and I’m looking forward to trying out something new.

Compliance has never been an issue for me. Since I began treatment in early 2000, I have only spent 4 nights without my machine, and they were all due to either a power outage or machine problems. Even when I lay down for a nap, the mask goes on and the air starts to flow. I've made a few trips where I had to sleep in my car along the way, and found out that a good inverter works fine in a pinch. I’m trying to figure out how to get through power outages at home now. If you have any suggestions, I’d love to hear them. My current solution is to stay awake until the power company gets it fixed.

All in all, CPAP gave me my life back. My OSA is not just treated, but almost completely controlled. No more waking up more tired than I went to bed. No more napping watching TV or at red lights. No more waking up 100 times a night. And since I was actually resting, some of my other physical problems began to improve, too. If you have irritable bowel syndrome and untreated OSA, you’re a lot more miserable than you need to be, trust me.

After I began educating myself about OSA, I realized my wife was displaying symptoms, too. It took me nearly a year to talk her into getting tested. Since her symptoms weren't presenting as severely as mine, she thought I was being silly. And then she came home diagnosed with moderate OSA, and has been on therapy for 8 years now.

Hang in there newbies. There is a combination that will work for you. Be patient; be grateful for the good things. Work with your doctor and techs to solve the problems that may come up. And if they won’t work with you, get new ones that will! Educate yourself and be proactive. Compliance is a decision, not an emotion. We do it because we decide too, not because we “feel” like it. I’d rather not have silicon plugs stuck up my nose every night, but considering the alternative, I do it anyway.

That’s my success story, and I’m stickin’ to it!

[surferdude2]

Hi GreatBlueWhale!

That's a very inspirational story that will no doubt help several who show up here as newbies and need some encouragement and assurance that this CPAP therapy really works and is absolutely necessary if you want to live long and do well.

It makes my day when I read such reports. Thanks for sharing. I'll do the same when I finally get all my answers and win the battle with the sand man.

[GreatBlueWhale]

Hi GreatBlueWhale!

That's a very inspirational story that will no doubt help several who show up here as newbies and need some encouragement and assurance that this CPAP therapy really works and is absolutely necessary if you want to live long and do well.

It makes my day when I read such reports. Thanks for sharing. I'll do the same when I finally get all my answers and win the battle with the sand man.

Thanks, Surferdude. I could have written a lot more, but honestly, words can't do my experience justice. I've really glossed over how bad I was. Glad you enjoyed my story.

[PsychoMike]

Thanks for sharing, GBW. When you get "there" it's sooooo much better.

[Gabby]

Welcome GBWhale and thanks for sharing your story. There is a load of inspiration in there.
I hope you will hang around the forum.
All the best to you and your wife.

[Clementine]

oh, that is so inspirational! Thanks so much for sharing. I am struggling to get to the point where it is all working for me.

[surferdude2]

Here's how my story goes:

I awoke at 4 am last December 20th and was gasping for air with a 130 pulse rate. I had to get up and sit in a chair for several minutes before it calmed down. Even then, when I tried to lie back down to sleep, I couldn't seem to get enough air to feel comfortable. I suspect anxiety was kicking in to make things worse. The following weeks showed that this problem wasn't going to go away even though I tried everything I could think of that might be causing it. I finally broke down and went to a local express care doctor. They referred me to a pulmanologist.

It took over 6 months of suffering while going to 3 different medical professionals and taking many expensive tests to only find that I had early stage emphysema. I already knew that but I insisted that there was some other reason I wasn't able to sleep properly so finally, at my insistence, the pulmanologist suggested a sleep study. I told him I would not be able to sleep in a lab setting and asked if there was any way I could get a home version of the sleep test. He said, "None that I know of that are certified." I accepted that and let him set me up with the local sleep lab.

Sure enough, I didn't sleep any at all during the 7 hours of the sleep test. Even so, when I went for the followup and results to be interpreted by the pulmanologist (he's sleep certified) , he said I didn't fit the Medicare criteria for apnea coverage. According to his interpretation, I had slept for over 4 hours and my AHI level was only 1.9, well below the >5 threshold that Medicare has established as the minimum for coverage.

When I heard that, I immediately told him that I didn't agree with the test results since I knew I hadn't slept at all and didn't see how anyone could get any useful data from the session. I also told him I didn't give a hoot about the Medicare criteria but that I was pretty sure I had sleep apnea. My evidence of this was several sleep sound recordings that I had made using a sensitive digital audio recorder suspended above my bed and close to my head. Those recordings demonstrated that I was struggling for breath on short intervals and sometimes went as long as 70 seconds without breathing, which ended up with a loud gasp and a repetition of the cycle within the next 5 minutes or so. He said that wasn't useful since it isn't a recognized method or facility but he would be willing to write me a prescription for a CPAP machine although it would state that it was to be paid for by me and not billed to Medicare.

I agreed out of desperation and found a local source for gently used CPAP equipment and bought a ResMed S9 Elite with humidifier, hose and a new gasket for the Quattro Mirage FFM frame (all for $500). The mask frame I was able to get for free from my brother. That was a little high but I was desperate and it was time to do something without regard to money.

After 3 days of self titration I could see it was going to take quite a while to arrive at a point where this machine would help me. That's when I stumbled across this wonderful site and read the many posts from others who had succeeded with their own self directed therapy. One thing stuck out more than all else, the value of an Automatically regulating machine. I suspected that from the outset since I had already made a deal when I bought the S9 Elite that would allow me to trade it back in for full value against a S9 AutoSet.

I made that exchange (paid $150 boot, too high again) and my therapy has been smooth sailing ever since. My first day on the S9 AutoSet gave me an AHI of 1.5. WOW! My current readings are: DATE 9/14/2014 PRESSURE 9.4 ~ 10.7 AHI .4 OBSTRUCTIVE .0 EPR 3 SLEEP DURATION 7:14

That's a far cry from the 8.5 AHI I initially got with the S9 Elite! I can only wonder what my AHI index was without a CPAP machine. It certainly wasn't 1.9 as I would be led to believe via the flawed sleep study!

The only change I have made to the S9 AutoSet was to change the default 4 ~ 20 wc pressure setting to 8 ~ 16 wc. That was more for comfort than to reduce the AHI index.

This stuff was well worth paying for and beats trying to convince the medical community that their sleep lab test isn't all that adequate for some folks. I may yet request another sleep test and even contact Medicare to see it they have any home test companies that they accept. I'll probably not be using the same pulmanologist this time around since he didn't seem to be too interested in advocating for me or checking to see if there is actually a home sleep test that is Medicare approved.

In the meantime, I'm a happy camper and feeling better than I have in years. I wish I had known about sleep apnea years ago since I think I have had it for a long time without knowing it. My older brother was diagnosed with sleep apnea and has been using a CPAP machine for 12 years. It was partially at his insistence that I started this quest. He has been a great help to me in my journey of acceptance of this rig and I'm thankful for all he does to help guide me. I'm also thankful for the free mask frame he gave me. I could have nearly have gotten a new machine for the price I paid for this one but I needed it STAT! It only has 100 hours on it so should last for a while.

To this site and all the past threads that were a great resource for me to draw from and get help without even having to ask.

ps. It's my opinion that these CPAP machines are only glorified fans and since they pump more air than you can ever breathe and have a safety valve that lets you breathe normally if/when the fan fails, I don't see how you can hurt yourself too much by doing your own adjusting, if you so desire. Using the resources on this site and a little common sense will put you down the road much faster than waiting on the typical DME clinician for guidance.