No luck with cpap but want to try again

Can you zoom in on the period of time just after 04:30 when the CA/centrals got flagged and the green CSR flagged time frame started?

Approx a 5 minut.e segment with the first 1/3 of the segment not being green section so we can see the flow rate before the green as well as some of the green along with maybe a couple of central/CA flagged events.

I am hoping/thinking that a good bit of the flagging that happened late in the night isn't real asleep breathing and evaluating that flow rate pattern might help ease our mind. If the ugly we are still seeing late isn't asleep breathing we don't worry about it as much except for the fact you aren't sleeping so great.

If you watch the videos here I think you will understand more what I am wanting to see.
http://freecpapadvice.com/sleepyhead-free-software

Also please don't try to cram so many graphs into one image. It makes the graphs hard to evaluate for for the screen shot that I asked for above.....just show the usual stuff on the left and these graphs only and in a size that will fit the screen and make for easy evaluation
Events
Flow rate
Leak
Flow limitation.
I don't need pressure graph at this time at all...we already know the pressure is fixed...and we don't need the pulse ox data or respiration data but we especially do need the flow rate zoomed in data of a size that we can examine each breath.

I think this is what you are asking for, let me know if it's something else

Yes...that's great...now one more image but this time all the green with the centrals flagged starting where this image leaves off so I can see even more of the pattern.
Start it at approx 04:38:00 at the same scale so that I can see more of the pattern that happened after it is cut off on this image.
You won't be able to get it all but another 5 minutes or so is sufficient.

Here ya go

Thank you.
Man I wish it was clear cut evidence that you were for sure asleep/awake but it's not absolutely clear.
It's not clear exactly real CSR but it is definitely periodic breathing which is a waxing and waning of the air flow.
If you go to this manual and scroll down there is an example of what obvious CSR looks like. Yours is "sort of" looking like it but not 100% exact.
https://www.respshop.com/manuals/ResMed ... %20her.pdf

Plain periodic breathing happening every now and then isn't a big deal but a lot of real CSR breathing can point to potential heart issues which of course can be a big deal.

For now I suggest that you stick with this current plan....fixed cpap with no EPR. Your central apnea count has reduced significantly with the removal of EPR or exhale relief from the equation. I don't have the time to explain it all in great detail but the short version is that for some people when they use any form of exhale relief they create a bilevel pressure situation and there is a very minority of people who this bilevel therapy situation can actual trigger centrals apneas.
Heck,,,,even just plain cpap therapy itself can trigger central apneas. Sometimes it can go away on its own and sometimes it requires a different form of therapy.

There is so much that we don't know about your situation that would be of benefit and maybe figuring out your problem.
Your original diagnosis...the number of centrals you might be having even without cpap pressure at all...
If you can get hold of your prior sleep studies...that would be a starting point but it might not be easy. Any chance of getting a copy of your original sleep studies????

Pugsy wrote: ↑

Mon Jun 01, 2020 11:58 am

If you can get hold of your prior sleep studies...that would be a starting point but it might not be easy. Any chance of getting a copy of your original sleep studies????

This is all that I have from that sleep study viewtopic/t179432/No-luck-with-cpap-but ... l#p1355123. Would there be something else?

The doctor basically told I had mild to moderate sleep apnea and the cpap machine essentially cured it so they didn't know why I still felt terrible. My insurance doesn't let me see another sleep doctor but I might try out of pocket. It's been my experience that it's quite a long process to see one and they just sort of shrug most of the time. My whole life I would sleep on average 9 hours a night of sleep and it would be quite hard to wake me up with snoozing the alarm multiple times. Since this started I've slept over 7 hours maybe 3 or 4 times.

I've never had any heart issues but that's interesting. I do have two AVM's. One in my brain and one in my spine. I've been told before they could make me prone to seizures but I've had them my whole life. Around the time these sleep problems started I was getting migraines with aura's that i never had before. Sometimes I would get them in clusters and be bed ridden for weeks. I haven't had a migraine in many months though and other than feeling like i'm in a zombie dreamworld all the time I'm pretty healthy with exercise and diet.

I was told I had a dust mite allergy so I've done everything I can to reduce dust mites in my house ( dropped the humidity below 50%, wrapped my mattress, comforter and pillow in protective wraps ). I have an allergy nose spray I take at night. I have an air purifier that runs in my bedroom.

Pugsy wrote: ↑

Mon Jun 01, 2020 11:58 am

Man I wish it was clear cut evidence that you were for sure asleep/awake but it's not absolutely clear.

I'll continue with this the next couple of nights and then post results. Maybe that will show something.

Let me ask you this. If i'm using the same pressure for my inhale and exhale does a bi-level machine make any sense for me? I was thinking of buying one out of pocket to see if that made any difference.

So let me get this straight...you had the sleep study for diagnosis purposes and then you started on cpap without having another sleep study to determine optimal pressures. Is that correct?

As far as getting a regular bilevel machine now....absolutely NOT. Waste of time and money at this time.

Pugsy wrote: ↑

Mon Jun 01, 2020 12:45 pm

So let me get this straight...you had the sleep study for diagnosis purposes and then you started on cpap without having another sleep study to determine optimal pressures. Is that correct?

That's right. I think they had me on the 5-10 and don't believe it was ever changed.

Gotcha.

Here's where you get the cpap treatment emergent central apnea speech. Some people put on cpap (with or without the use of exhale pressure relief) will develop central apneas in a number that is problematic and they didn't have centrals in problematic numbers on the diagnostic sleep study. Depending on when document you read...maybe 10 to 15 % of the people will have centrals pop up and they didn't have enough centrals before cpap to be a problem.

A few central apneas here and there....not a problem. We all have them ...even people who don't have obstructive sleep apnea.
They are only a problem when present in large numbers or causing sleep problems.

To complicate things further...sometimes just using exhale relief itself can cause centrals to pop up in large numbers.

It's a complicated confluence of several factors that causes central apneas to happen. Short version is an imbalance in the exchange of gasses that is part of the normal breathing process. CPAP (or the bilevel pressure situation when exhale relief is added to cpap) can cause the body to blow off or "wash out" too much carbon dioxide in the blood stream so that the blood levels of carbon dioxide don't get high enough for the brain to recognize that it needs to send the "breathe human" signal to the body. It's the level of carbon dioxide in the blood stream that dictates to the brain whether the body should breathe or not.

A central apnea is when their is no air flow going through the airway but the airway is still open. There is simply no effort to breathe. Hold your breath for 10 seconds....that's essentially what a central apnea is. Now a random holding of the breath for 10 or 15 seconds is no big deal...we can all do that easily and it won't hurt anything. The problem occurs when we have too many of those such events happening in a dense cluster back to back and it ends up maybe causing a drop in oxygen levels or maybe repeatedly waking a person up which of course we don't want.

Sometimes treatment emergent central apnea will fade away with time as the body adjusts to cpap therapy. The body learns or adapts to the breathing instability that happens with the carbon dioxide wash out and it simply fades away. Sometimes the body never learns and the centrals are still in numbers that create a problem and when that happens and cpap is still needed then a different kind of cpap machine therapy is needed. That's when we talk about the bilevel machines with back up rates (normally referred to here as ASV machines). Do understand that this type of bilevel machine is NOT what I call a regular bilevel machine. Back up rate capable machines will actually force a person to breathe when the brain doesn't send the breathe signals.

Now how does all this pertain to you? Right now it's too soon to know for sure but I suspect you probably have a combination of both ordinary treatment emergent central apnea (that's why you see some central sleep apneas flagged even now without using exhale relief).
I was hoping that just reducing or eliminating the trigger of bilevel (that's what EPR does since it creates 2 distinct pressures for inhale and exhale and is sometimes a central apnea trigger in a VERY small minority of people) would be all that is necessary for your central apnea count to reduce down to a more normal and non alarming level. Unfortunately last night's report doesn't lend me to believe that has happened yet...anyway. The first night without EPR was more promising.

So....what to do....if it were me I would just continue with the fixed pressures with no EPR and cross my fingers that the centrals will fade with time. There is every chance that they will. That's why doctors most normal first line of doing anything when treatment emergent central apnea is to adopt a "wait and see if they go away" approach unless the number of centrals are just horribly high (yours isn't at this time).

Since you just recently restarted cpap therapy...this sort of has to be treated like you first started cpap and that's how I would treat it if I were in your shoes. I suspect you never really were able to give cpap therapy a good run in the past due to using EPR and the obvious central apnea component that EPR triggered for you. You probably actually felt worse because you ended up having a lot more central apneas than you ever had obstructive apneas. Don't blame you at all for quitting. I would likely have done the same if I had been in your shoes and no one had taken the time to follow up and figure out why I was feeling like total crap using cpap that was supposed to help me.
You fell through the cracks....sorry but that's the cold hard facts of life.

Let's try the easy way first and cross our fingers and see what happens if we just give things some time and maybe your body will adapt and the centrals will fade on their own.
Please report here daily to me and the forum on how things are going. I want to keep a close eye on things and make sure we don't have a worsening that could be a bad problem that continues.

If you want to send me a PM...feel free...but please also post updates here as I think it is a good educational experience for everyone and I want everyone to learn and understand. If you need clarification as to something I have said...just ask. Often what I type comes out different than what is in my head. It's clear in my head but might not be so clear on paper kind of thing.

If things get out of hand and things devolve to a point that I think you need to seek medical care....I will be the first to tell you.
At this point...I don't see that yet.

Make sense? Anything need further clarification?

Pugsy wrote: ↑

Mon Jun 01, 2020 5:06 pm

Make sense? Anything need further clarification?

Thanks so much for all this. All this support is really kind. What you said makes sense to me, I wish I had some records of what my machine was set to the first time I went through cpap but I'm fine looking at it like i'm starting it for the first time.

I'll continue to post daily updates of graph. I'm always hopeful that tonight will be better than the previous night.

Here's today's charts. Same hours of sleep again. Woke up after five to five and a half hours but couldn't go back to sleep with the mask on. Really really tried but I was having some pain with the mask. Was able to snooze for like 15 mins. Took the mask off and was able to sleep again until 8:45. Feel pretty woozy and stuffed up.

My O2 looks much better. I'm really hoping my new mask can help me keep it on all night. I'll look at adjusting it tonight.

Pretty much as expected. Not pretty but not horrible either.
You can expect to not feel so great when you sleep without the mask. That means untreated obstructive sleep apnea filled sleep on top of some central apnea sleep. Lose ....lose situation anyway you look at it.
The sleep you got wasn't enough for one thing and you had a bunch of central apneas happening in the middle of what you did get.
Not enough hours of sleep coupled with less than ideal sleep quality itself.

edit

Norma45 wrote: ↑

Tue Jun 02, 2020 11:12 pm

This experience is probably not true for everyone, but since I was like you, struggling to breath out with a cpap, I would suggest trying a bi-pap.

Actually most people do well and appreciate the comfort that bilevel machines offer. Most people....not everyone though.
There is a small percentage of people who find that using a bilevel machine actually creates significant problems with central apneas.
When people use EPR or Flex exhale relief they are essentially creating a bilevel pressure situation but for that small minority the bilevel pressures create significant breathing issues from the number of central apneas.

So the OP here was using his machine as a limited bilevel when he used EPR but his central apnea count was through the roof.
He was having trouble breathing but not because of a problem exhaling against the pressure. He was simply not breathing at all because of the central apneas. Totally different breathing problem than it sounds like you experienced.

If he were to get a machine like yours it would be a total waste of his money because the very thing that offers you comfort will cause him to have a truckload of central apneas during the night and essentially suffocate from centrals like the rest of us suffocate from obstructive apneas if our OSA goes untreated because these machines can't treat central apneas. They only treat obstructive apneas.

Now there is a type of bilevel machine that could help his problem but it is VERY expensive and requires a doctors prescription if insurance is going to help with the cost and a ton of paperwork hurdles. It's not the same kind of bilevel machine you are using at all.
The first hurdle...the doctor will want to adopt a "wait and see" approach because sometimes these weird little problem can sort itself out with a bit of time. Cold hard fact of life. The insurance company will make a person wait to see if things get sorted out with a bit of time and quite often it does.

So for him to go out and get a machine like your bilevel machine....number one it won't help his problem at all and number two it will make it worse and be a total waste of money.
Bilevel pressures are the problem in this situation and not the solution unfortunately.

The OP here in this thread....one of a very small minority of people who are unlucky enough to find that the very thing that makes cpap/apap comfortable for the majority of cpap users actually makes their apnea issues significantly worse.

We never ever want to advise anything for anyone that might make things worse. Please be careful when offering advice when you don't fully understand the problem or what you see being advised that might go against what you want to advise.
There is a reason why I specifically said "don't waste your money"....because it would be a waste for one thing and I already know that for him to use a regular bilevel will make things a lot worse. I won't ever, ever advise that sort of thing when I know for sure what the results will be.

Now there might come a time when I have to tell this guy that he needs that fancy really expensive machine to deal with his OSA and the central apnea that cpap causes him to have. Right now isn't the time though....I already know what his doctor will say....he will say "let's give it time"....so that's what we are doing now and if we come to a point where we have given it adequate time and the doctor will have to accept that fact and then the ball can get rolling for that high dollar machine. It's a whole other can of worms that gets opened in terms of not only machine cost but other sleep studies and doctor visit costs.

Pugsy, sorry I missed reading the second page and when I saw there was one and read those posts, I took away my suggestion (since there were other issues being focused on - e.g. the CAs). I did that shortly before you posted. But I am appreciated your posting about lower pressures - while I had seen others post that info, you were the first one that explained things in a way that made sense.