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New to CPAP as of about two weeks ago. Most of this time was spent fiddling around with different masks to find one that didn't leak excessively (16-25LPM leakage). During this period of trying out masks I was unable to use the CPAP more than an hour or two. On the advice of my res therapist I sat up reading with it a lot in order to get used to it. But until we got a properly fitting mask the CPAP would just shut off due to excessive leakage after I went to sleep. When the white noise ceased I would wake up, take off the mask and go back to sleep.

So I've really used this machine with a properly fitted mask about two nights.

First night, I stayed up reading with it on for a while, as my therapist suggested, then used it about three hours of fitful sleep before I could not stand it anymore, and was so exhausted the next day I was completely nonfunctional. I was unable to drive 15 miles to where I work without pulling over and sleeping in a park for an hour. Falling asleep at the wheel is not normal for me.

I didn't use it the next night, and had a relatively normal night of sleep.

Second night, I used it for less than an hour, woke up in a panic unable to get any air and tore the damn thing off my face in order to breathe. The machine was apparently functioning normally and said (after I calmed down and read the screen) it had an average pressure of 7, a leakage rate of 1.5 LPM, and an average AHI of 4.8. Slept fitfully the rest of the night. I'm very tired the next day, unusually so.

Some deets: I'm using a full face mask because of some reasons I'll go into below, I am using a Transcend 365 CPAP set to 7.0-20 pressure, and "Easy-Ex feature" so that it allows easier exhaling. If I stay up reading for a while the mask seems to work fine and I don't have any problems breathing. I can feel that it keeps my throat from closing up and my tongue from closing off, which is the point. The machine has a built in humidifier which I have set all the way up, and I don't see any evidence of rainout in the air tube. The machine is lower than my bed which would tend to move any rainout back toward the machine. I don't have OSCAR but can access some software from the manufacturer that gives a chart, but the salient data is posted in this message.

Full face mask: I have abnormally small nasal passages and often have a plugged nose from allergies. This has caused me to be a lifelong mouth breather. I can use a nose pillow for a while until I go to sleep and my mouth falls open, then the pressure just passes out my mouth and wakes me up. Nose pillows just don't work for me. I have some facial hair,. and we found a full face mask that uses memory foam and makes a decent seal with an acceptable leakage rate.

Ten or more years ago I tried CPAP with a crude machine of that era, that only provided constant pressure, not BIPAP or APAP with an exhale feature as these do now. I could use that machine for a few minutes, it would inflate my lungs but I could never breathe out once I relaxed and tried to sleep. It wasn't long before I ran out of air and tore it off my face in a panic to be able to exhale. Lower pressure settings did not prevent apnea, so we gave up on it.

My wife wakes me up sometimes when she notices I am not breathing, and this happens most nights. Sometimes I wake up in a great panic but most often not. My sleep study, one of those not-so-accurate home studies, said I had an AHI of 6, which I believe would be higher if I had a proper study in a sleep lab. I dont' trust this sleep study result. I know that I snore, stop breathing, wake up in a panic gasping for air, and this can often trigger midnight asthma attacks.

So far the more I use this machine, the worse I feel the next day, and I can't really sleep with it on. I feel so exhausted the next day after using it that I have to take a break from it for a day to catch up on sleep. I haven't given it much of a try but the results have been so terrible I am quite discouraged. How does anyone get any sleep with this wheezing, claustrophobic contraption strapped on your face making all this noise? If anyone has some suggestions that might help me get used to it I'd like to hear them.

Dizzybear wrote: ↑

Thu Feb 03, 2022 1:17 pm

I'm using a full face mask

Find your exact model mask on youtube and carefully watch three or four videos on fitting and adjusting.

Dizzybear wrote: ↑

Thu Feb 03, 2022 1:17 pm

I have abnormally small nasal passages and often have a plugged nose from allergies.

Schedule a consultation with an ENT. Tell her your story. There are good treatments these days. No use suffering and making CPAP difficult.

Welcome to the forum!

As things proceed, please stick to this one thread.

So how many hours of real sleep do you think you have gotten the past 2 days...each night?
Were those however many hours fragment with a lot of wake ups?
No sense in worrying about the first few nights since you admit not using the machine all night or even much of the night.

What data can you get on the Transcend?
AHI??? Event category of that AHI (there are 3 categories).
Leaks???

Until you can actually get some solid blocks of sleep and the therapy pressure being optimal at the same time...not much chance of feeling better.
If you aren't getting much sleep at all....you are going to feel like crap.

If you aren't sleeping well and having lots of awakenings or staying awake....what is the specific problem?

How did you end up with the Transcend? Not having detailed data like we can get from OSCAR is going to make it really difficult to try to figure out if your therapy is even optimal or not.

ChicagoGranny wrote: ↑

Thu Feb 03, 2022 5:37 pm

Dizzybear wrote: ↑

Thu Feb 03, 2022 1:17 pm

I have abnormally small nasal passages and often have a plugged nose from allergies.

Schedule a consultation with an ENT. Tell her your story. There are good treatments these days. No use suffering and making CPAP difficult.

Agreed. My ENT did a simple turbinectomy that solved my "plugged nose from allergies" issue. Then I resumed nose breathing and was able to ditch the full face mask for pillows.

BuckarooBanzai wrote: ↑

Sat Feb 05, 2022 11:21 am

My ENT did a simple turbinectomy that solved my "plugged nose from allergies" issue.

Gramps had a turbinectomy and correction of a deviated septum. He says it changed his life for the better in a big way. Should have had it done years sooner.

Here's an update - I'll reply in more detail to Pugsy and ChicagoGranny in a bit, but here's the central problem:

The longer I use the CPAP, the worse I feel the next day. Even one hour of use leaves me feeling literally trashed the next day. Three hours of CPAP use turned me into a zombie. AHI numbers on the CPAP machine were higher for these short periods of use than they were on my home sleep test. Pressure on the machine automatically ramped up to 11.4 during sleep. Eventually I would wake up in a panic for lack of air and tear the thing off my face to get a breath.

So on a whim I turned the therapy pressure all the way down to 4, and had a normal night of sleep after one hour of use, half of which was sitting up. AHI numbers dramatically lower (1.8 vs 11 or 12). Pressure stayed low at 4. Feel great the next day.

Here's what I believe was happening at higher pressures. This is a similar result to my failed attempt at using CPAP some years back with crude machines of the day. Once I fell asleep, my lungs inflated, but I was not able to exhale all the way at the high pressure setting. I was able to get rid of enough CO2 to not feel asphyxiated, but was suffering from low level anoxia because I could not fully exhale. As you probably know the body uses CO2 levels as a proxy for Oxygen levels, we have no innate way of measuring our body's oxygen level. As long as you exhale enough CO2 you can happily go along in mild anoxia without knowing it. The machine sensed I was having problems, and automatically turned the pressure up, making the problem worse until finally I was choking and tore the thing off my face in a panic.

CPAP use at too high a pressure setting was giving me low level anoxia. Even one hour of mild anoxia makes a person feel like crap for the next day, or worse. If it goes on too long, obviously, it could kill you.

My respiratory care team had no data or tests to set the pressure -they just picked a number out of a hat and said that's what I needed like cowboys shooting from the hip. The setting they picked was making me really sick. The automatic ramping of the machine when it sensed I was having problems made it worse.

At this point I will refuse to use the CPAP again unless I can do it while hooked up to a pulseox monitor (Oxygen monitor) for a night or two. I think CPAP could well be beneficial, but this cowboy mentality is dangerous as hell. A good table pounding at my res care team is also in order as they have made a possibly deadly mistake.

Dizzybear wrote: ↑

Sat Feb 05, 2022 11:47 am

Once I fell asleep, my lungs inflated, but I was not able to exhale all the way at the high pressure setting. I was able to get rid of enough CO2 to not feel asphyxiated, but was suffering from low level anoxia because I could not fully exhale.

Sounds like bull donkers you dreamed up in your desperation.

Dizzybear wrote: ↑

Sat Feb 05, 2022 11:47 am

So on a whim I turned the therapy pressure all the way down to 4, and had a normal night of sleep after one hour of use, half of which was sitting up. AHI numbers dramatically lower (1.8 vs 11 or 12). Pressure stayed low at 4.

Did you sleep during the hour you used the machine? The AHI score means nothing if you were awake. Can you expound on those two sentences for clarity?

Dizzybear wrote: ↑

Sat Feb 05, 2022 11:47 am

At this point I will refuse to use the CPAP again unless I can do it while hooked up to a pulseox monitor (Oxygen monitor) for a night or two.

You can buy a good recording oximeter inexpensively. Forum members can make recommendations.

Dizzybear wrote: ↑

Sat Feb 05, 2022 11:47 am

but this cowboy mentality is dangerous as hell. A good table pounding at my res care team is also in order as they have made a possibly deadly mistake.

Not really. You are overreacting.

I'd like to echo the question that CG has put in red. It'd be helpful to know the answer.

Anoxia is the complete loss of oxygen to some part of the body. I doubt very much that you experienced it using PAP.

Hypoxia is the partial loss of oxygen to some part of the body, and hypoxemia is the lowering of O2 levels in the blood. Apnea can cause hypoxemia. As CG has mentioned, you can get an O2 monitor to check your O2 levels if that worries you. It'd be worth getting a recording oximeter so you can see results for the whole night.

During respiration, CO2 levels need to build to a level high enough to trigger your next breath. Sometimes it takes a longer-than-usual pause between breaths for adequate CO2 to build up. If the pause is 10 seconds or more, that gets flagged as a central apnea. Do you know whether your sleep study showed central apnea events?

Breathing with a PAP machine can wash out some CO2, leading to central apneas. This is called treatment-emergent central apnea. It often goes away on its own as you body adjusts.

A pressure of 4 leaves most people feeling starved for air. But if it works for you, go for it. I would not, however, criticize your care team for failing to set your machine at a constant pressure of 4.

ChicagoGranny wrote: ↑

Sat Feb 05, 2022 12:04 pm

Sounds like bull donkers you dreamed up in your desperation.

Not really. You are overreacting.

You are entitled to your opinion. I don't have to agree at all. Please keep insults to yourself, I am trying to get some help here.

Miss Emerita wrote: ↑

Sat Feb 05, 2022 1:00 pm

I'd like to echo the question that CG has put in red. It'd be helpful to know the answer.

Anoxia is the complete loss of oxygen to some part of the body. I doubt very much that you experienced it using PAP.

Sorry I used the wrong word. In layman's terms I'm not getting enough air, wake up desperate for breath and claw the mask off my face gasping. Whatever the medical term for that is, those are the facts. This is not claustrophobia, nor is it the same experience as apnea. I know what waking from apnea is like, and this is a different experience. Whatever the medical term for that is, it is clearly not conducive to sleep!

So on a whim I turned the therapy pressure all the way down to 4, and had a normal night of sleep after one hour of use, half of which was sitting up. AHI numbers dramatically lower (1.8 vs 11 or 12). Pressure stayed low at 4.
Did you sleep during the hour you used the machine? The AHI score means nothing if you were awake. Can you expound on those two sentences for clarity?

On the night I turned the pressure down, I stayed awake for about 30 minutes (this was recommended as a tactic to get used to the machine) and slept for about 30 minutes. I then took the mask off, this time not because I was desperate for a breath, but because I had planned to use it only for a short time in order to get used to it. I have sat up reading for a while each time I have used the machine recently, on the advice of my care team, in order to get used to the machine. I sit up for about 30 minutes no problems and then use the machine for 30 minutes to several hours. Each use before I turned the pressure down I felt really terrible, confused, exhausted, irritable, the next day despite having a normal amount of sleep after use of the machine. This experience is not normal. Even if I stayed up late I never feel this bad the next day.

Previously on nights I had stayed awake for a while, the machine registered high AHI during 50% wake 50% sleep periods. This time was unusual as the measured AHI was much lower. also it was much different as I did not feel exhausted/zombied/confused the next day. If the AHI is not useful for wakeful periods, maybe one should just ignore that and focus on how I felt the next day - a dramatic difference when the pressure was lowered.

There may be a misunderstanding - it's usually recommended to wear the mask while e.g. watching TV etc, but not with the machine on. And while you may feel fine at the machine's default low (min.) setting of 4, most don't and usually end up raising that to 6 or 7, while leaving the max setting at 20 (or not a lot less). It's the min. pressure that does the job of dealing with apneas, not the max.

Dizzybear wrote: ↑

Sat Feb 05, 2022 8:56 pm

ChicagoGranny wrote: ↑

Sat Feb 05, 2022 12:04 pm

Sounds like bull donkers you dreamed up in your desperation.

Not really. You are overreacting.

You are entitled to your opinion. I don't have to agree at all. Please keep insults to yourself, I am trying to get some help here.

Welcome to the zoo

Dizzybear wrote: ↑

Sat Feb 05, 2022 11:47 am

Once I fell asleep, my lungs inflated, but I was not able to exhale all the way at the high pressure setting.

Can you blow up a balloon?

even bilevel machines at a pressure of 25cmh2o can't produce enough pressure to blow up a balloon.

alternatively, if you put a straw in a tall drink 10" tall, can you blow bubbles through the straw? because that's right at 25cmh20 pressure you're overcoming to push the water all the way down the tube.

Julie wrote: ↑

Sat Feb 05, 2022 9:51 pm

There may be a misunderstanding - it's usually recommended to wear the mask while e.g. watching TV etc, but not with the machine on.

Wearing the mask without the machine being on is patently stupid, so no, that is NOT what is recommended.

Really? It seems to be what I've seen many times - if only to get used to the mask.