No luck with cpap but want to try again

[intemperance]

You elected to try cpap again and I assume it was because you were feeling pretty crappy.

Yea, I could get into it but it's really ruining my life being tired all the time. Some days are worse than others but it's really sucking the light out of my life. At this point it makes sense for me to try anything. I was told I had a dust mite allergy so I've done a great deal to prevent dust mites in my house. The next step is removing all the carpets which is going to be quite expensive. I've looked into various surgeries too but without knowing if it's going to be helpful, it's scary to risk operating on my jaw and risk a year of recovery.

Remember I said that sometimes treatment emergent central apnea will fade with time as the body adjusts. I have no way to know if you used it enough to give the body a fair shot at adjusting on its own.

Yea, everything you said about it really makes sense. I feel like a few are different things i'm trying this time over last time. 1. keep the pressure constant 2. don't ever sleep/nap without the mask on 3. try to get leak levels low and a process that you're not fighting. I'm hoping just to see longer sleeps with low AHI's and then eventually to feel better. What you've given me so far seems like the right direction for that. The last maybe 4 weeks before cpap I was waking up EVER night in the middle of the night with anxiety and that pretty much went away on cpap. Although I woke last night at 3 with a dry mouth and annoyed, I didn't have that same anxiety. I do think I'm more tired on the cpap though in general although I wasn't logging it before.

I am sure a lot would depend on multiple factors including just how low my O2 went without cpap

I just got the o2 meter so I never actually slept with it without the cpap. I'd be curious to see but I do have the o2 levels from my sleep study. I remember it was one of the things the sleep doc said that my o2 went below 90 and that wasn't good.

We could fix both problems right now today with one different machine....the ASV bilevel machine.

Looks like those machines are about 3 grand. I have the means to purchase one without insurance but I would need to find a doctor to give me a prescription. I already tried my primary care and they said I'd need to talk to my sleep doctor and I can't get a call back from them. Are there online doctors that could review my data and give me a prescription ?

All I can do now is say continue with status quo and work with the mask issues because the mask issues themselves will give us crappy sleep and make us feel awful and at this point we can't really tell how much the centrals are causing the crappy feeling or the mask and general sleep quality itself is causing the crappy feeling. I wish I could offer better but my crystal ball doesn't work so good to help me out.

I can continue to do that. I'll talk to my doctor again about an ASV machine. You've been a really great help. It's quite nice to not feel all alone in this. Thank you ~

Solomon

[Pugsy]

If you watch craigslist and sometimes this forum....you can buy an ASV machine without a prescription.
I don't know if you could get one from secondwindcpap.com. Officially they require a RX for all machines unless it's an international sale.
I have heard that they don't always strictly enforce it though.

At the moment I don't know of anyone who has one but I know of one person who might. Let me reach out and see what he says.
Now I gotta try to remember his forum ID... my memory sucks sometimes.

I have bought ASV machines without RX or even telling my doctor that I was going to do it. I have used them.
I don't have one right now though. Since I don't have a problem with centrals it seems like I always end up selling them to someone like you who needs one.

I am going to be honest here...given you gave cpap 5 or 6 months and nothing really changed and you feel worse now (which isn't surprising because you have just traded one form of untreated apnea for another that is actually worse and untreated)...I would be hunting up an ASV machine if it were me in your shoes.

[intemperance]

Morning there,

Yesterday I was watching some videos on central apnea as a result of cpap and they mentioned that too high a pressure can be one of cause it. So last night I decided to experiment and reduced my pressure a bit from 6 to 5. Still had a bunch of CA's but didn't have any obstruction events which is interesting. Numbers look very close to two nights ago although this time my O2 hit 88. The video basically mentioned everything you said. The co2 doesn't wash out and so your body doesn't breath. It then sees the co2 is way too high and you get this sort of hyperventilation breaths of hard breathing and then flatline. Which to me are exactly what mine look like. They said the same thing about a couple weeks to a month for your body to get used to it.

Woke up at 5:45 and then snoozed until 7:45. Didn't have any issues with my mask last night nor any dry mouth. Still tired and wish I had slept longer of course.

I have a doctors appointment on Wednesday to talk about getting an ASV machine. Told the sleep tech that two years ago after trying this for 6 month I was still seeing the centrals and they agreed an ASV is probably the next thing.

Since I didn't hit any obstructions last night I'm thinking maybe I'll try reducing my pressure to 4 tonight. Do you think that makes sense?

[Pugsy]

While too much or higher pressures can be trigger for central apneas it isn't always higher pressures. Sometimes it's simply any pressure at all and reducing the pressure won't change things.
Sometimes people are lucky and there is a line where above the line the centrals pop up and below the line they don't and as long as people don't cross the line they won't have a problem with centrals.
I have known people where the line in the sand is maybe 14...above it and they run into trouble and below it they don't.
I have also known people who get a truck load of centrals even at 4 cm.

You can give 4 cm a try as long as you are comfortable with that lower pressure. Some people feel rather suffocated at lower pressures.
You won't suffocate of course but it can feel that way for some people and when that happens we don't sleep so great.

[intemperance]

Morning,

Here's today's chart. Yesterday I felt pretty crap all day and this morning I can tell it's going to be a bad day too. I have a painful pimple on my nose so I had to move off the bleep and onto the DreamWare nasal cushion. The dreamware was giving me some pain so I was wrestling with it a lot last night. I think i'm going to order an n30i and see if my face likes that better.

I've ordered a ResMed S10 AirCurve ASV machine and hoping that it arrives this week.

I also start a new job tomorrow and from trying to do work yesterday and not being able to I'm thinking I might have to go off the cpap until my ASV shows up. This is officially the end of my third week trying cpap again.

My numbers don't actually look that bad last night. o2 didn't get below 90. My AHI's are low. But I feel like a truck hit me.

[intemperance]

Hey friends,

Didn't want to go dark on this. Yesterday I felt really really terrible almost the entire day. Usually by the night time I start to feel better. I even tried taking a nap but my body wasn't doing it. I start a new job today so just had to forgo cpap because I'm pretty sure it's making me worse. Attaching my o2 stats from last night without cpap.

Strangely enough I slept 8 hours without a night awakening last night, which is interesting. I'm tired today of course ( like always ) but functional. I have a doc appt on wed and that ASV machine on order. I'll report back when I get on the ASV machine. Thanks again !

Solomon

[intemperance]

Hey Friends,

I'm back. I was finally able to get an Resmed Aircure s10 ASV. Last night I used that my my n30 mask and a chinstrap. It honestly felt like I slept zero but I must have slept some. I'm pretty tired today but the numbers are interesting. It looks like i have some leak issues with my mask but I know I kept opening my mouth too. I got up at 3am and wondered around a bit because it was just feeling like I was just laying there. The biggest thing I felt like I was fighting with the ASV was it it wanted me to inhale for a longer period than felt comfortable. Like every breath had to be inhaled for 3 seconds before it could be exhaled.

I've never had an AHI of zero before, so that's kind of interesting. Be more fun if it felt like I slept though.

Thanks !

Solomon

[Pugsy]

You can turn off the playing with the machine session in the afternoon so you can clean up your reports a bit.
Look on the left and scroll down to the bottom where it shows the sleep sessions. Click on the short play session and change it from green to red and it will be turned off and omitted from the graphs.

If you continue to have a problem with the timing of the inhale/exhale and feel rushed we can change that a bit to get more in sync with your own respiration timing but for now try it at the defaults. The first night with ASV is a bit of an adjustment for anyone so lets not get in a big hurry to change that setting. Play with it some more during the day while awake to see if you can get more comfortable with it.
You can always turn the play time sessions off.

[intemperance]

Morning there good people,

So last night I put the ramp on the ASV, used the bleep mask, and wore a chin strap. Got to sleep much faster and then woke up at 4am with air rushing into my mouth Walked around a bit and got some water and slept again until 6:30 or so with air rushing into my mouth again. Finally got out of bed at 7:30 but didn't feel like I got enough sleep and I'm pretty tired.

I've never had any luck wearing a mask that goes over my mouth. It always gives me tons of leak problems and gives me pain and sores. Looks like I have to figure out a way to keep my mouth shut though.

Number are still good ! .2 AHI and my o2 numbers look crazy. only 2 desat events and my o2 never went below 95%. Probably the best my o2 numbers have ever looked. I got one of those dreem devices coming today. Hoping that can help give me some useful numbers as well.

[khauser]

What's weird about that is that no large leaks are reported. When you say air rushing in, can I reinterpret as air rushing out? I can't see why air would be rushing in....

[intemperance]

What's weird about that is that no large leaks are reported. When you say air rushing in, can I reinterpret as air rushing out? I can't see why air would be rushing in....

You're right, it would be air rushing out wouldn't it. Zooming in on the 4:10am I don't see any leak events at all around there.

[Pugsy]

The mouth opening or air in mouth leaks are probably brief enough not to make it on the graphs but of course annoying enough to wake a person up pretty quickly when it happens.

The back door from the mouth to the airway has come open and air going up the nose and down the airway enters the mouth through the open door because it wants to exit early. Shutting the back door is more of a reflex action than anything. We can use our tongue while awake (place it in the roof of the mouth) to close the door but when we go to sleep the tongue gets lazy and will drop down to open the door.

There is a reflex that will hold that door shut but I can't explain how to do it. Wish I could because I could make a fortune just eliminating chipmunk cheeks. I can be using my mask and machine and open my mouth to talk, stick out my tongue, yawn, etc and not have air enter my mouth at all. It is just something that I learned or happened over time using cpap. I am not the only one that can do this.

You are doing it for the biggest part of the night when you don't wake up with air in your mouth.....we don't know why it changes or what to do when the air enters the mouth to get back to the way it was. About the best we can tell people is to practice keeping the tongue placed in the roof of the mouth to close the door and hope it becomes a habit and second nature and it will stay in place while asleep.

[intemperance]

Hey there,

Yesterday was a very hard to make it through the day. I got my dreem thing and last night wore that, mouth tape, chin strap, o2 meter, and bleep mask. I could NOT get to sleep though. I tossed and turned for three hours until I took some zzzquil, which I hadn't done in a few years. I feel so horrible today and like I'm about to have a breakdown.

The mouth tape wasn't really helpful, I was still opening my mouth and getting dry mouth. I think I'm swallowing air too as I was feeling really bloated. The dreem said I got 14 mins of deep sleep and 5 hours of sleep overall.

[Time will tell]

Hi,

I’m in my second week, it is challenging and even more added stress with insurance wanting compliance or they won’t pay. I am on my second mask, had nasal pillows and went to a nasal mask with a home made liner and paper taping my mouth, and that has helped, got two good nights, then last night not so much, maybe need more humidity. I’m tired a lot, they say it takes time. You mention difficulty falling asleep. Right after I got the second mask last week, and still being unable to get to sleep as well as waking during the night, I was back searching the internet and what caught my eye talked about electronics near the head of the bed. Looking back I started having trouble falling asleep most nights around the time I upgraded to a new cell phone last year, the previous one was five or six years old. The phone was always on the nightstand. Add to that the pap machine, which mine is wirelessly connected to A T &T so everyone can monitor my sleep, also near my head on the nightstand. There is a lot of information out there about this and how to deal with it, it isn’t difficult. Also, modems and other electronics add to it. I am falling asleep better since making modifications and don’t put it down to mind over matter because I have tried many things over time and addressing this has made a difference. Don’t know if I am extra sensitive or what, but in general this is a health concern with all the electronics nowadays. Maybe this is something that will help you.

[intemperance]

Don’t know if I am extra sensitive or what, but in general this is a health concern with all the electronics nowadays. Maybe this is something that will help you.

Thanks for this. I was sleeping without my cell phone near my bed for the last couple months but I needed it there last night on account of I couldn't ask Alexa to turn the lights off with my mouth taped modern problems. I've been neglecting the sleep hygiene stuff and tonight I'll get back to that. No cell phone in the bedroom, blue light glasses a few hours before bed, no cell phone after 9, etc. Time for better habits !

Solomon