Severe mixed apnea at the age of 35

Herbert wrote: ↑

Sun Jan 29, 2023 8:38 am

I'm scared of asv because it's way more invasive than cpap. with the forced backup breathing etc. doesn't sound comfortable at all. I already had problems to adjust to cpap

Ahhh...misconceptions about how ASV works.

1....you think it pushes a mountain of air with every single breath you take while awake or asleep and you know you simply can't tolerate that..much less fall asleep with it.

Is that along the lines of what you were thinking?

That's simply not true. I have used an ASV machine myself and for a couple of years simply because it was super comfortable.
I don't "need" ASV in terms of centrals but I still have a few centrals (it's normal to have a few and centrals are only a problem if a person has a LOT of them).
The big push of air ONLY happens if you don't breathe on your own...central apnea....and it forces you to start breathing again or it continues pushing air until you do.
And it only pushes the air based on the back up rate that has been set ...either manually set or auto adjusting set.

So ASV breathes for you when you don't but when you are breathing normally it really does nothing special.
ASV can also deal with obstructive apnea stuff along with the centrals if a person happens to have both kinds of events.

Thanks for the explanation. still sounds scary to have air pushed down your throat. But what would the machine do in case the user doesn't have obstructive and no central at a certain moment. does it then still push like a cpap with a lower pressure or do nothing at all? Also how would it correct periodic breathing?

Herbert wrote: ↑

Sun Jan 29, 2023 8:58 am

Thanks for the explanation. still sounds scary to have air pushed down your throat. But what would the machine do in case the user doesn't have obstructive and no central at a certain moment. does it then still push like a cpap with a lower pressure or do nothing at all? Also how would it correct periodic breathing?

If nothing is happening in terms of either central or obstructive events to cause the machine to want to do anything then the machine only provides enough baseline pressure (per whatever settings) to keep the machine running.
CPAP just stents/holds the airway open....it isn't forcing winds down your throat. It's keeping the airway open so that WHEN your own body takes a breath then that breath can make it to the lungs.
And when people have central apneas then they DON'T take that breath even though the airway is already open and then that's when ASV pushes a breath and sometimes it only pushes the one to jump start the breathing.

As far as periodic breathing....how and why it happens and to how important it might be (in the absence of a truckload of centrals)....that's above my pay grade. I don't understand the mechanics behind it all.
Sometimes cpap itself can fix or improve on central numbers...certainly looks that it happened for your case but maybe doesn't do the greatest of jobs or a complete job. Frankly I am surprised as to how improved the overall AHI with just cpap is but I have seen it happen in a handful of other cases. Sometimes CPAP works...that's why in the US... docs and insurance companies want to try cpap first before going to the high dollar machines. Don't ask me why because I don't know why it sometimes works but most of the time doesn't.
I would assume that whatever is causing the centrals might be a factor in why cpap sometimes works but I don't know.

Thread is quite long and my memory isn't so long.....how are you feeling and sleeping NOW with current therapy as it is?

Pugsy wrote: ↑

Sun Jan 29, 2023 9:46 am

I would assume that whatever is causing the centrals might be a factor in why cpap sometimes works but I don't know.

Exactly. That's why I'm so obsessed with finding out why CPAP is working to some extent for me. To get a glimpse of what is causing my misery. Is there any obstructive component that is messing up my breathing or not... While for obstructive you nearly have no chance to get rid of it except with complex surgery for some cases, for centrals and periodic you might get rid of it, if you can find the cause and treat it. (That's just me trying to be positive somehow... you could call it the last straw).

But somehow nobody can tell. Neither others affected nor the doctors. At least not those that I contacted so far. I searched the web up an down but didn't find somebody in Germany yet who is specialized in this special kind of disease. All the doctors around here seem to have lots of experience about obstructive, but merely any experience with centrals. Yes I know its not very common, but even for the rarest diseases there mostly is at least one or two experts around. Do you know If there Is any doctor in the US that is very well experienced in this field that I might give a try to contact?

For the last part of your question on how I'm sleeping now: So my AHI is down to below 2 on average. My Oxygen is always above 93% and on average at 97%. So for those two parameters therapy is a full sucess, but..... I still wake up too ofen most nights. I know it's normal to some extent. But for me it still feels like too often. I also have had really good nights after which I woke up feeling rested. But even after those nights the feeling of being rested only lasted maybe until Lunch. The tricky part is, I never felt completely wasted before thepary, so it's hard for me to tell what is normal...

So you are in Germany???

Sorry, but I don't know any sleep doctors much less anyone who might be able to help you. I have been out of the medical field for too many years now. Most of who I did know are either dead or retired.
Though I do think that Dr Steven Y Park is still practicing but I don't know him personally. By reputation...well thought of from what I have read.
https://doctorstevenpark.com/
He's the only one I can think of at the moment.
Dr Krakow has retired and besides...you wouldn't like him anyway. His preference is to fix ALL breathing issues with ASV.

I do know that sometimes people can have what we call idiopathic central apnea which is just a fancy name for "we don't know what causes it"

Some medications can cause it...particularly pain medication of some sort because those meds tend to suppress the respiration and make things worse. Sometimes people with a history of head injuries will see too many centrals. Sometimes a reason can't be found which of course is frustrating because we need to identify a problem before we can fix it and sometimes we just can't identify a for sure cause.

So I am taking a stroll through the 7 days detailed reports from sleephq.

I don't see real for sure flagged PB/CSR....just some breathing that looks like it could be PB which is just a waxing and waning of the air flow at times where it also looks like we aren't seeing good quality sleep breathing. Meaning I am seeing a lot of SWJ (sleep/wake/junk) from awake/arousal breathing.

Is what you are calling PB flagged or just what you think looks PB ish?
Does PB flagged show up as green segments in sleephq????? I don't use this software myself so other than zooming in on the flow rate I don't have much experience with it.

Are you waking often during the night and spending much time with mask and machine on while awake????

While I don't think we can blame all the ugly on awake breathing....I am thinking a sizable chunk of the ugly is awake/arousal breathing.

Looks more like train wreck sleep quality...now why the train wreck??? We can't tell what might be the cause from what the machine gives us.

Flow limitation graph is very active....I don't know how important that fact is.

Herbert wrote: ↑

Sun Jan 29, 2023 2:51 am

I did a sleep study in a sleep lab of a Hospital. The study took two days. first day I was cabled up to measure eeg, ecg, spo2, chest movements and airflow. On the second day the same only with cpap added. They told me I had an initial AHI of 58. With CPAP it went down below 5 in an instant. So I was sent home with the Resmed 10 and a pressure of 7.

It seems to be working pretty well.

Herbert wrote: ↑

Sun Jan 29, 2023 2:51 am

Why do I think that I only have central apnea and hypopnea: In the lab they measured not a single obstructive event. Also my Resmed only showed 2 obstructive events in 5 months usage. Last but not least I have never been heard snoring. Neither by my family nor by my wife which has been sharing my bed for over 10 years. Still the lab somehow "measured" a lot of snoring - not recorded on audio. So I assume it's been measured wrong. But that's only an assumption

Lab results aren't carved in stone, Robysue here has said she had three different lab tests and each of them came back with different results. However, I would hope that they accurately read the data from your in lab test, wherein I believe they could tell the difference in a central and obstructive hypopnea, based on the amount of breathing effort recorded.

One of the problems with in lab tests is that they're conducted in a foreign environment, not what you are used to. Snoring is typically recorded not audibly, but based on variations in the airflow. That's how CPAPs determine snoring.

Herbert wrote: ↑

Sun Jan 29, 2023 2:51 am

Coming back to my current situation: I feel not very well rested and looking to my recordings of the Resmed I have a lot of periodic breathing every night. So I'm really worried what the root cause might be e.g. an underlying condition that has not yet been found despite the several checks I had. Also I wonder if my current therapy is right for me. Don't get me wrong. Switching to ASV or similar really scares me and is nothing desirable for me, but if it might be the only way I want to know it.

Why would an ASV scare you? I've got two of 'em in the other room, no longer needed by the person I bought them for.

What is "a lot" of periodic breathing? can you post a few representative nights, with Oscar screen shots, not on imgbb?

Just for references, this is "a lot" of 'periodic breathing', much of it not even flagged as such:

@Pugsy: No I've not been awake a lot. I mean I wake up a lot, but usually fall asleep quite fast again. in those 7 days there has nothing been flagged green as CSR and I think sleephq generally does not do it. so in the end looks like I'm sleep shifty and that might be the problem?

@Palerider: They even showed me the results because I also didn't believe them. it clearly showed no breathing efforts when an apnea was reported during sleep study. so it seems at least without cpap it's definitely true. I was there 3 months later for a control night. there I had an ahi of 0.8 and they didn't mention any periodic breathing or alike... they just wrote nice sleep stage patterns and everything seemed to be fine.

for the Screenshots I tried to attach them here, but it says the board quota is not sufficient

Herbert wrote: ↑

Sun Jan 29, 2023 2:19 pm

so in the end looks like I'm sleep shifty and that might be the problem?

Might be part of the problem.
It's rare that we get so lucky and only have one problem in the mix.

I did see a lot of what appears to be PB breaths (not flagged) with a general waxing and waning of the breaths but the bulk of it was preceded by obvious awake/arousal breathing or followed by obvious awake/arousal breathing which just makes me wonder what is messing with the sleep itself. It's hard to know when for sure sleep was happening and you have to be asleep for any of this to matter.

Arousals....we don't always remember them....they happen but we just don't remember.
When I see 2 obvious breaks in therapy where a person turns the machine off and back on again....I know that sleep quality is far from what it should be. From your usage graphs overview.....lots of fragmented sessions. That screams not so great sleep quality.

There is definitely a sleep quality problem going on here but I don't know how much it plays in the overall scheme of things.
Also don't know the why behind it which is important to know. Is it a side problem or a main problem??? I don't know. That's above my pay grade and the machine is zero help in figuring out why we don't sleep so great unless there is something blatantly obvious and I just don't see it here.
The bulk of the central flags I looked at....were preceded by big gulps of air right before the flag and that means not asleep centrals.
The hyponea flags....geez...most were the hyponea flags I see sometimes and I wonder what in the hell the machine is thinking.

I know I raised more questions than I answered.....sorry but that happens sometimes.

Why can't I post anything here as attachment. that's really annoying.

Herbert wrote: ↑

Sun Jan 29, 2023 3:25 pm

Why can't I post anything here as attachment. that's really annoying.

viewtopic/t183806/EVERYONE-PLEASE-READ- ... MENTS.html

Because there is no room available for new attachments. The storage space is full and it's full because people posted and posted and posted and then left the forum and don't know they are hogging up the space.

I don't have the power to remove them and no one that does have the power seems to want to do anything about it.

You can embed an image and have it show up just like it would if you used an attachment.
You don't have to do the link thing.
Here's an image from my imgur account...Shows up just like it is an attachment.

finally... thank you. so attached some of my worst
ights in terms of periodic breathing

Herbert wrote: ↑

Sun Jan 29, 2023 2:19 pm

for the Screenshots I tried to attach them here, but it says the board quota is not sufficient

Then follow the instructions in the page you haven't read.
Or follow these: wiki/index.php/Oscar:organize

Herbert wrote: ↑

Sun Jan 29, 2023 3:43 pm

finally... thank you. so attached some of my worst
ights in terms of periodic breathing

November
December
December
September!
August!!

Could you find something *recent* to obsess about?

We're good here, but we can't change the (distant as far as sleep goes) past.

palerider wrote: ↑

Sun Jan 29, 2023 5:02 pm

Herbert wrote: ↑

Sun Jan 29, 2023 3:43 pm

finally... thank you. so attached some of my worst
ights in terms of periodic breathing

November
December
December
September!
August!!

Could you find something *recent* to obsess about?

We're good here, but we can't change the (distant as far as sleep goes) past.

It's not like they are from 2019 and everything could have changed meanwhile. But I tried to search for more recent ones and didn't find much"flagged" as CSR.

But the two attached screenshots show that I had periodic breathing. And this went on for hours that night. Any suggestions, opinions?




And here sth more recent with CSR flags


Here sth from this night - ddefinetly not CSR but still periodic