Just tried ASV and I hate it. Help?

[Technopauper]

Many users of the ASV say that it took a while for the machine to "learn" their breathing.  As far as I know, no CPAP, Bilevel or ASV has adaptive or artificial intelligence.  None of these machines change their programmed behavior over time, but the patients using them do learn and adapt.  Maybe a future generation of PAP therapy will incorporate AI to improve results, but imagine how this would work under a FDA regulatory system that is not friendly to inconsistent or adaptive outcomes.  I think it is a long way off.

Sleeprider - I tested this theory when I got a 2nd brand new Aircurve ASV after having used another machine for a couple of months. I set it to exactly the same settings and it felt exactly the same from the first moment I sucked in.......I clearly adapted to the machine not the other way round.

Rob

[Broomstick]

I thought thought if I had moderate apnea with an AHI of 16 that I could hang up the machine for a while. Boy was I wrong. I felt like I was going to DIE yesterday.

I don't really get tired all day like most people, but I lose energy. I had so little energy that I felt like all the life was being sucked out of me. Not sure how much more energy someone can lose before dropping dead on the floor.

Pulse oximiter shows good. Blood pressure shows good. Regular doctor found nothing wrong (month or two ago but I've feel like this well before that).

This situation seems directly attributable to not using the machine. I'm not exactly the pinnacle of energy today but I don't feel like I'm gonna die like I did yesterday.

Without the machine, I really feel it in my chest when I wake up. I could tell that whatever is happening to me is no good. 


I feel like my breathing starts to become compromised the minute I lay down. Sometimes 6cm (the maximum PS with ramp) is not enough. So I'm experimenting with turning the ramp OFF. That causes it to hurt (too much air?) when I get behind and the machine breathes for me. So I dropped the Max PS and Max EPAP down 1cm each and that made all the difference. Then the machine's timed breathing became a literal breath of fresh air.

But that could cause a problem if I need more pressure when I'm actually sleeping. This is exactly why I HATE the fact that the timed backup can't be delayed!

I feel like the best option would be BIPAP with a fixed high pressure support. No games or other BS. I want a machine that will support my breathing like a ventilator because I feel I need it. 

Thats, of course, assuming the mouthpiece won't help, which I am already preparing myself for.

[jaswilliams]

When you get behind the machine and it starts blowing at you blow hard at the ASV and it will reset the algorithm and the machine will spend the next 3 minutes learning your new breathing rate

[SarcasticDave94]

Note that for some, Blowback may not work. I'm not sure of the criteria that makes it work vs fail, but I'm just mentioning it might not be successful for everyone.

[Broomstick]

When you get behind the machine and it starts blowing at you blow hard at the ASV and it will reset the algorithm and the machine will spend the next 3 minutes learning your new breathing rate

Note that for some, Blowback may not work. I'm not sure of the criteria that makes it work vs fail, but I'm just mentioning it might not be successful for everyone.

I must be one of the few that it does not work for. It certainly does not hold back for 3 minutes. 30 seconds maybe. But not 3 minutes.

[WillSleep]

Hi Broomstick ... funny story behind the name?


When I first started the first 20 minutes of each sleep session looked like yours in the image you posted on 05-29-2019, 05:34 AM

Good news: We can surely help you get a better experience that I saw in that screenshot.

I might have configured my machine the same as those settings in that screenshot if someone asked me.  "Now show us an example of the ASV might be configured so incorrectly as to give someone a horrible treatment experience, an example to include in our 'What not to do' list."

"Well, from this screenshot we see the EPAP + Ramp configured was pretty ineffective at his sleep onset apnea events and with Pressure support configured PS Min: 0.0 and PS Max: 20.0  

So from my experiences ... 

At sleep onset the combo of EPAP+Pressure Support (PS) & Ramp settings is still allowing new apnea events to occur about ever 90 seconds.  With Max EPAP locked down leaving Pressure Support the responsibility to solve the apnea all it's own, with a slap happy range of 20 to work with (PS Min: 0.0 and PS Max: 20.0).  

But never Fear!   Left to fight alone the ever eager (maybe overly eager) ASV Pressure Support will jump to attack the rising apnea with a sudden burst of air pressure ... that might knock the guy halfway out of bed and prevent him for going to sleep."

Any that sound familiar? 

We would be happy to help.

What settings are you using on the ASV now?

A new screenshot of a full night and a second screen shot like this zoomed into the first 20 mins of sleep?

WillSleep

[Broomstick]

I'm not sure what else there is to do but die in the street. I'm going to start making it clear to these doctors that I haven't worked in years and remain in bed for most of the day. I am not a regular person who can carry on with life while waiting for appointments weeks and months in the future. I need help now.

I also need to better explain the problem without just saying I have trouble breathing and sleeping.

I've lost my ability to sleep for more than 1 hour at a time without a machine. Does that sound like an AHI of 16 to you?

It is russian roulette sleeping with the ASV. I average 5.5 hours but it could be 6 or 4 or 3. When I wake up from ASV, I usually can not continue with it because its too hard to breathe while laying down. If I sit UP with or without the machine, I can breathe fine. But when laying down, my breathing is reduced and the machine makes it 1000x worse.

I want to be evaluated at a hospital somehow where I can be locked in a room until I sleep and have real doctors figure out what is wrong. Is that such a crazy idea?

The way the sleep studies work is just WRONG. You are given a time limit and if you can't sleep within that limit, they will let you go. They shoudln't be allowed to do that. I came in with a problem and shouldn't leave until the problem is resolved. If the technician has to leave, then the next (night or day) technician can take over.

Why are simple things made so complicated. Why do we have to do things the hard way? Today I unloaded on a receptionist when I was told they don't have a waiting list to call if an earlier appointment becomes available. A piece of paper! A piece of paper next to the phone. I know damn well they DO have a list because they told me about it every other time. I erupted because I had problems with this place before and am tired of getting jerked around by everyone.


Now heres the problem that troubles me.

I've wondered for a LONG time if BIPAP would help. I would manually be able to set the pressure higher and keep it there. But I certainly don't need a higher pressure when going to sleep. And if I set it to automatic, well, thats not gonna be any better than ASV then, is it.

The fact that these machines (CPAP auto and ASV auto) aren't putting out MORE pressure despite the fact that I'm struggling to breathe (felt in dream and when awakened), should I just assume that the machine is correct and the problem is NOT a blocked airway and maybe my breathing muscles getting tired or something?

Even if there was some kind of breathing muscle problem, BIPAP is designed specifically to help with that as well.

[sheepless]

it does make one wonder. IDK the answer, but assuming you've ruled out too low and too high pressure, it seems to me that the fact that you breathe alright with the machine while sitting up but not lying down should mean something to your doctor(s).

[Broomstick]

it does make one wonder. IDK the answer, but assuming you've ruled out too low and too high pressure, it seems to me that the fact that you breathe alright with the machine while sitting up but not lying down should mean something to your doctor(s).

I never quite mentioned that. I never thought to sit up with the mask on after waking up and see if I could at least breathe better like that until very recently.

[Sleeprider]

Broomstick, did you ever try the BiPAP ST? It's not for everyone, but for some reason, it sounds like you.