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+--- Thread: I'm done. (/Thread-I-m-done)
I'm done. - Earlsgirl - 09-02-2018
I fought with a CPAP for six months. My sinuses kept registering events and kicking the level to 17.5 and staying there. I couldn't get the pulmonologist to drop the reading. I fought with it and fought with it night after night. Wrecked my front teeth since I was using a full mask; dried out my skin horrible. I can see in the mirror exactly where the mask was. Unless doctors are willing to listen to their patients, I think a lot of people will give up. I would have liked to have stayed on one at 5 or 6 level. But that was disallowed. I got a second opinion finally, and that PA said that I could toss the stupid thing totally since I never did have apnea. I had sinus issues. That would have been nice to know six months and two sleep studies earlier.
RE: I'm done. - OpalRose - 09-02-2018
Just some clarification...sinuses don’t register events, but an Apnea event can cause the pressure to rise where it is needed to treat your Apnea.
Of course, there are other reasons for the pressure to rise, like snores or flow limitations, but doesn’t stay at that pressure all night.
When you say you got a second opinion, did that include a second sleep study? What did your first sleep study say? What was your untreated AHI?
What did your PA base his decision on that you don’t have Sleep Apnea?
I have attached your original thread here for others to see your background. From that thread, it appears that your Apnea was being treated with a low AHI.
We could have helped you and still can if you post a #sleepyHead screenshot of your data. It sounds like you suffered from a mask that didn’t fit you, and possible incorrect pressure settings.
It’s up to you, but quitting shouldn’t be an option.
http://www.apneaboard.com/forums/Thread-Pressure-Question-on-pressure
RE: I'm done. - Sleepster - 09-02-2018
(09-02-2018, 02:51 PM)Earlsgirl Wrote: Unless doctors are willing to listen to their patients, I think a lot of people will give up.
That's the reason why Apnea Board exists. When we support each other we increase the chances of success.
Quote:I would have liked to have stayed on one at 5 or 6 level.
That's easy enough to do. Takes less than five minutes. We can tell you how.
RE: I'm done. - sheepless - 09-02-2018
sorry to hear of your troubles. many of us are here for similar reasons: trouble adapting and lack of support from The System. many of us have worked or are working through a wide variety of apnea and pap related issues with help from our fellow hoseheads. if you want to give it a try, post some data and your questions. start with the results of your sleep studies. cpap must have been prescribed for something. follow the links around the site to learn how to download and use Sleepyhead software and how to post Sleepyhead data. as much trouble as cpap can be, most realize the alternative is worse, potentially much worse. a number of inquiries here are from people that had quit cpap and are trying again because in time the symptoms became intolerable. I was diagnosed in 1987 but received no treatment. I was fully aware of my problems with sleep but tried to adapt. I put off fighting The System for 30 years until I'd become virtually disabled by sleep deprivation. doing somewhat better now with help from forum members but I have to wonder how much damage occurred in those 30 years. some folks less fortunate than me so far can tell you exactly what damage putting off treatment did to them. you seem to have had two extreme opinions (high pressure vs don't need cpap at all?). maybe one of those is right. or you might do well to find a middle ground.
RE: I'm done. - Earlsgirl - 09-02-2018
I had to turn in the machine. I was unable to mess around with the machine, itself, when I had it as I had to bring in the chip to the pulmonologist for him to see all going on. If I ever purchase my own, I plan to set it at about 5. At 5, I could have used the nasal one instead of the full mask. But since they insisted on the higher setting, my passages couldn't handle it.
RE: I'm done. - Earlsgirl - 09-02-2018
I have mild hypopnea. But because the events wouldn't resolve due to blocked sinuses, it kept the pressure stuck at the extreme of 18. Since I gave up the CPAP, I am sleeping better and oxygen levels are good. I'm losing weight, exercising. BUT my mild arrhythmia has returned. So, I debate purchasing my own machine. I'm not sure I can get a prescription, though, to purchase my own. I don't want to jump back into the hamster wheel with the pulmonologist. It got so bad that I was only using the machine while awake so that I could keep dropping the ramp back down to four. Once it would reach around 8-10, I'd knock it down. If it went above 10, I would develop severe aerophagia. I thought I would die a couple times, it got so bad.
RE: I'm done. - tommyngo - 09-02-2018
(09-02-2018, 04:46 PM)Earlsgirl Wrote: I had to turn in the machine. I was unable to mess around with the machine, itself, when I had it as I had to bring in the chip to the pulmonologist for him to see all going on. If I ever purchase my own, I plan to set it at about 5. At 5, I could have used the nasal one instead of the full mask. But since they insisted on the higher setting, my passages couldn't handle it.
You tried the CPAP machine for 6 months and quit already ? I used it for 2 years and saw my AHI stuck at around 15.-16 ! Not until 2 weeks ago, acting on advices & tips in ths Forum and some trials & errors , I got my first zero AHI reading this morning ! Here are my changes : change the pressure range , use a soft cervical collar and switch to a nasal mask (from a full face mask ) and keep bugging SleepRider & OpalRose to review my charts for further comments & helps
! It's that simple ... 
RE: I'm done. - Earlsgirl - 09-02-2018
I no longer have the machine. Only maybe two times in six months did I reveal any issues with the mask. No leakage. But night after night, WHILE I WAS AWAKE WATCHING TV, it would soar up to 17.5 and stay there. I'd hit the ramp, watch it spin up, hit the ramp, watch it spin up. I'd do that for four hours to get in my four hours. I stopped sleeping with it because of the severe aerophagia that would develop if I slept. I turned in the machine; and I got a second one. The second one did the same: spin up; hit the ramp; spin up; hit the ramp. I changed out masks. This last time, the PA said I needed to stop the nonsense since I wasn't using it when I slept. I probably didn't use it for about three months when asleep--just awake and getting in the four hours. I told the pulmonologist what I was doing, and he gave me some pills for my sinuses. Those did zip. Kept getting in the four hours...
RE: I'm done. - Earlsgirl - 09-02-2018
They wouldn't let me change the pressure. I asked. BELIEVE ME, I asked. And I was warned not to mess with the machine, itself.
RE: I'm done. - sheepless - 09-02-2018
yeah, many of us have heard that song and dance. it sounds like you were not served well by this doc and PA.
if it isn't working out after a month or two (usually you know well before that but they always tell you to wait, you'll get used to it), it's time to try something different. in your case, I'd start with a different doc.
meanwhile, you can find quite a lot of info here about various means to obtain another machine if you choose to go it alone.