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[-] DariaVader +0 points · almost 3 years ago

I am recently diagnosed with sleep apnea, but I believe I have had it all my life. As a child I had constant nightmares about being buried, choked, drowned etc, yawned incessantly, was always too tired to play outside, achy all over, migraines, polyuria, food allergies, immune system dysfunction. As an adult I developed DMII, Thyroid Goiter, High BP in addition. I have been on apap since November 2014 and for the first time in my life I sleep all night without needing to get up. Wake feeling alert (still not a morning person) I am hopeful that even at my age some of the damage done to my body can be reversed.

I struggle with mask comfort, vented air (using the light weight diffused venting P10, so it might be as good as it gets) eye and face edema due to something about the PAP (air, mask pressure, sinuses) and i hate all the cleaning that is required to keep my equipment smelling pristine and free of cooties

I worry about power outages (or power grid failure), traveling, loss of job and therefore insurance to pay for all this stuff

I think intro text should be on the profile - so you can see it when you look at another person on the forum :)

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[-] MakeSleepAPriority +0 points · almost 3 years ago

Welcome Daria! I'm so sorry it took so long for you to find help. It would be interesting to explore why it often takes so long. There must be others out there too. Do you have any idea what the barriers were that kept you from getting apnea diagnosed and treated sooner?

Don't give up on the CPAP. I bet your body is going through a lot of changes getting used to all the great things that go on during sleep. A lot of repairing and restoring goes on during sleep. I think your body will find ways to thank you for restoring good quality sleep. Hang in there!

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[-] DariaVader +0 points · almost 3 years ago

I am 56. When I was a kid, sleep apnea was not something anybody was diagnosed with. When people began to be diagnosed, I would read the symptoms and say to myself, sounds like me, but drs didn't think I fit the "profile." My primary care doc started mentioning sleep study a couple of years ago at least, but it has taken this long to actually do one. One night on cpap and I knew that I have always had it to a greater or lesser extent.

primary barrier = our health care system. Insurance companies need to know that treating apnea is cheaper than treating the issues it causes, and Doctors need to be more vigilant looking for apnea sufferers. I have heard that there are at least 2 women for every 3 men who suffer apnea, but more like 1w to 10m being diagnosed; women with apnea are getting overlooked because our spouses don't escort us to the doctor complaining about our snoring :D for women, who may not admit to snoring easily, nocturia is probably a more likely cue. Docs don't seem to know that and mine was surprised when I said that cpap had fixed a life long need to get up at night.

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[-] barbz +0 points · over 2 years ago

It has been a long journey for me too. I did not have nightmares, but would wake up feeling as if I had been running all night! I was a tomboy, got lots of exercise and deep sleep was never a guaranteed option at night.

Later, the technology let me down....in 1986 I had a study done in Miami at Mt Sinai. No apnea events. My husband tried to explain that my breathing sounded strange at times and he made the sound that resembles air going through a narrow opening. He offered to record it. They were not interested. Hypopneas, while not full apnea events can take their toll after a period of time as the body is not getting the full amount of oxygen!

I finally got my positive apnea sleep study in 2007, only after I promised to visit a psychologist first. My primary felt is was only depression. Guess what! It was not depression... still not getting restorative sleep, but better than before, that is for sure. I have tons of hypopneas as well as flow limitations. During my last study in Dec 2014 I had my first documented centrals as well as many RERAS (respiratory event related arousals). Looking into getting a BIPAP. Insurance will not cover this as my overall apnea score is considered mild!

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[-] DariaVader +0 points · over 2 years ago

my AHI was not that high in my test, due to me not sleeping for the majority of the night I had the test, but I got scored as moderate anyway due to the clustering events during "REM" and the high number of RERA which counts towards RDI and can now be used instead of AHI for insurance. You should check again, things are changing WRT how Insurance companies handle apnea. I put "REM" in quotes, because I had a home test, and they really cant tell. the portion of my study identified as REM was the only part where I was actually asleep.

I fell asleep once without it (had taken it off) and have this vague memory of rousing doing a "kkkk" in the back of my throat and thinking this is how it was b4 cpap but not waking enough to put it back on

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[-] Paulie +0 points · over 2 years ago

Hello,

Please allow me to introduce myself, My name is Paulie and I am from Massachusetts.I just turned 50 this past December and I am a victim of sleep apnea for many years.

For the past 14 years I have been battling with sleep apnea. I am still struggling with it as I cannot find a good doctor that will help me resolve my apnea issues. I first started using CPAP machine since 20003. however, I have stopped using it as it was frustrating that I cannot get the results I need to get a good night sleep. I have stopped using the CPAP machine in 2004 which I gave up because I felt I was not getting anywhere. Starting 2012 I began using a CPAP along with a full face mask and after I met with a Doctor whom I thought has resolved my issues with Sleep apnea. Sadly, I have not been able to get solid results of getting a good night's sleep. I then met with another Doctor whom again I felt he was not listening to what I have to say at all

I am still using my CPAP machine which the only positive side is that it keeps me asleep throughout the night but I'm still having trouble staying awake throughout the day. I have given up on looking for a Doctor that will help me and be able to get a good night's sleep. Im trying to lose weight, and exercise as much as I can but sadly, Im not doing well in that department.

It is depressing that I cannot find a doctor that is willing to go above and beyond to help me and sadly that I have given up. I know I sound like a broken record but at my age I cannot get sick.

Well, thanks for letting me share my story perhaps I can get some good advice and or some support. I do have a friend who has sleep apnea as well. But we don't really talk about it much.

Paulie

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[-] ang +0 points · over 2 years ago

Paulie, Reading your story stirs up many old fellings of anger and frustration with the medical profession.] I have been using cpap for 10 years now. And have had to walk through a lot of poop. Is it possible to get another Dr or find a sleep clinic in the area?

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[-] Paulie +0 points · over 2 years ago

Hello Ang,

Its not that Im angry at the medical professions its just that Im frustrated that I cannot find one doctor that will listen to what I need to inform them. Im in the process of doing some research as to what and where I can find a good reputable doctor that specialize in sleep apnea.

Like you I am going through alot of poop myself..but its good to know that someone understands what I am going through..

Paulie

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