Centrals and Doctor Wont Do Anything

[lindalam89]

I believe I have centrals or mixed apnea. Every day when I check my cpap data, my entire apnea events are made up of centrals, maybe one or two hypopneas. I show this to my doctor and he keeps saying that the problem is my mental health, not the centrals. I keep telling him that every sleep study I had barely showed no apneas, only centrals, hypopneas and reras, so i do not know where they got the "mild sleep apnea" diagnosis. I was not asleep long enough for the centrals to show in a out of normal range. But in the short 15 minutes I was in REM, two centrals were registered.

My doctor got fed up with me and just keeps replying "No".
My thinking and communication abilities are severely impaired from my insomnia. It's getting worse and every night I have heart attack like events. Doctors say my rhythm is normal and wont do anything.

I am desperate for help. And I see that the time my centrals show up are times I find myself waking up. I am seriously considering buying a ASV without a prescription but my doctor is insistent that I dont need it and that it is dangerous.
Any opinions?

[LSAT]

Unless you have DOZENS of CAs appearing in clusters, and your AHI is high, the CAs should be ignored. Your doctor may be right.

[lindalam89]

I do not have dozens. But I have about 3-5 centrals every few minutes. Is this just sleep wake transition centrals?

Can you explain in depth why centrals on a cpap is not something to be treated with a ASV?

[Pugsy]

But I have about 3-5 centrals every few minutes. Is this just sleep wake transition centrals?

Can you explain in depth why centrals on a cpap is not something to be treated with a ASV?

Please post a screen shot of a "bad" night in terms of the number of centrals you are seeing being flagged so that we can see what you are seeing.

Bear in mind that centrals that are associated with awake/semi awake time simply don't count for anything...Awake centrals are meaningless because you are awake and the machine is only flagging awake breathing irregularities.

Now sleep onset centrals...real centrals when you are actually transitioning from awake status to asleep status are normal...and not normally considered a bad thing to have unless we are seeing truckloads or them and they are causing low Oxygen levels or they continually bounce you back out of sleep status to wake status. When they keep bouncing a person out of sleep...they are messing with overall sleep quality and that's something that can be a problem...but usually the Central/Clear Airway index is going to reflect a higher number or the reports show significant clustering all night long.

So...we ignore the known awake time centrals.
For the possible sleep onset centrals...unless they are creating a problem of some sort then we also ignore them. I know it's hard to do mentally but that's what we have to do.
If we could see what you are seeing on a bad night...it would help us try to figure out if what you are seeing is really worth worrying about.

About going to ASV on your own.....unless you have some cardiac issues (like congestive heart failure) or other contraindications for cpap therapy...it probably is not all that dangerous. You know that Dr Krakow has long suggested ASV for UARS issues.
I am currently using an ASV type of machine...the S9 Adapt and I went to it on my own and decided to continue using it after last summer's scare in regards to potential congestive heart related issues because I don't have any cardiac issues that put me in the potentially dangerous category. I made the switch on a lark really...wanted to see what it was like and found out that I slept better with it. I don't know why and I sure can't recommend it just because I did it. I have no idea if it will help you sleep better...UARS is not a problem that I have been fortunate to be "blessed" with. If you are indeed having enough sleep onset centrals to keep bouncing you out of sleep then the centrals would be addressed by a machine like mine but the way the machine addresses it may also bounce you out of sleep because it would deliver a rapid large burst of pressure so the treatment itself could also cause you to wake up. Now for myself....I see evidence of a handful of those bursts presumably in response to a sleep onset central (never had centrals otherwise of any importance) and I sleep just fine through those bursts but then I have always been lucky in that I can sleep through some pretty dramatic pressure changes even on cpap/apap/bipap.

If you do elect to do it on your own you have to be prepared for some heavy duty education and also be prepared to buy the machine privately because it's unlikely you would ever get a doctor to give you a RX for it.
Should you elect to do that...we have a few forum members who might have an ASV machine available that has been gently used. If you buy it smart (for right price) and you find you can't tolerate it...you can always put it up for sale and not get too hurt on the price.

I can't tell you what to do....but if you decide to do it...I will try to help in any way that I can.

[ChicagoGranny]

I do not have dozens. But I have about 3-5 centrals every few minutes.

Check your math. "3-5 centrals every few minutes" adds up to dozens in a normal night.

[OKCSleepDoc]

I do not have dozens. But I have about 3-5 centrals every few minutes.

Check your math. "3-5 centrals every few minutes" adds up to dozens in a normal night.

Boom! Good Catch Granny! this is similar when patients with insomnia tell me they wake up 3-5 times during the night. I ask them how long it takes to get back to sleep and they say "I never get back to sleep". I then have to remind them that if you wake up 3-5 times, then you must have fallen back asleep at least twice. Math! but I guess the US doesn't fare well globally in the math department anyways, so it is to be expected.

[Heart Jumping]

I believe I have centrals or mixed apnea. Every day when I check my cpap data, my entire apnea events are made up of centrals, maybe one or two hypopneas. I show this to my doctor and he keeps saying that the problem is my mental health, not the centrals.

Linda, some doctors are very poor at communicating and do so in an insulting way. Do you tend to suffer from anxiety? Maybe what he means is you are getting anxious over something that is nothing to worry about. Hopefully others can advise more once you post screenshots of exactly what's being recorded, but having some centrals show up is fairly common, and they often don't represent actual events.

It's getting worse and every night I have heart attack like events. Doctors say my rhythm is normal and wont do anything.

What does heart attack like events mean? Do you feel pressure on your chest? Heart skipping? Racing? What does "rhythm is normal" mean? When sticking his stethoscope of on your chest, or have they done some actual testing? For instance, have they had you wear a holter monitor for 48 hours?

[metsfan302]

I do not have dozens. But I have about 3-5 centrals every few minutes.

Check your math. "3-5 centrals every few minutes" adds up to dozens in a normal night.

3-5 centrals every few mins = hundreds a night right?

Based on 6-8hrs sleep.

But yes a screenshot from Sleepyhead etc would help

[lindalam89]

I do not have dozens. But I have about 3-5 centrals every few minutes.

Check your math. "3-5 centrals every few minutes" adds up to dozens in a normal night.

Sorry I should have been more clear.

I don't use the apap for very long, so for some hours there are about 3-5 centrals.. others none, because i'm awake. So you're right, my math is wrong. What I was trying to say is that I will sometimes see centrals clustered every few minutes. Then a long hour or two break when I am wide awake, so no centrals are registered.

Pugsy: I took some shots from Sleepyhead on my old computer, but since upgrading, I lost the data. But I think I have sent you an image of my concern where I thought there were clusters. Don't remember if I sent you the shot that had an AHI of something like 11.

At any rate, here is a image I found that sort of describes my concern but is not a very high AHI that I've seen:




Maybe it's sleep-wake centrals. I'm not sure. I know correlation doesnt always equal causation but I find it frustrating that I wake up frequently because I feel too tired to breathe. Then the waking up repeatedly also prevents me from reaching restorative sleep, and the cycle continues.

[lindalam89]

I do not have dozens. But I have about 3-5 centrals every few minutes.

Check your math. "3-5 centrals every few minutes" adds up to dozens in a normal night.

Boom! Good Catch Granny! this is similar when patients with insomnia tell me they wake up 3-5 times during the night. I ask them how long it takes to get back to sleep and they say "I never get back to sleep". I then have to remind them that if you wake up 3-5 times, then you must have fallen back asleep at least twice. Math! but I guess the US doesn't fare well globally in the math department anyways, so it is to be expected.

Sorry, my communication abilities have degraded. I have pretty bad insomnia and it effects my cognitive abilities. I wouldnt blame it on my education. More like i'm so tired, I cant remember or think properly.

What I meant to say I will see centrals registered about 3-5 times in a short time span, usually when I am really fatigued and fall asleep, then wake up a few minutes later.

Not trying to sound pitiful but my insomnia is pretty bad. I've had a sleep study once when a technician unplugged me because she said I wasnt sleeping. Another time I was told about sleep state misperception. When I got out of the lab, the technician apologized to me and said I was one of the few patients shes seen that really does have insomnia. I had several sleep studies and from what I recall I had zero delta, and about 15 minutes of REM

[BlackSpinner]

Step one - use your machine whenever you sleep. If you don't you are just undoing the good of using it in the first place.

[lindalam89]

I believe I have centrals or mixed apnea. Every day when I check my cpap data, my entire apnea events are made up of centrals, maybe one or two hypopneas. I show this to my doctor and he keeps saying that the problem is my mental health, not the centrals.

Linda, some doctors are very poor at communicating and do so in an insulting way. Do you tend to suffer from anxiety? Maybe what he means is you are getting anxious over something that is nothing to worry about. Hopefully others can advise more once you post screenshots of exactly what's being recorded, but having some centrals show up is fairly common, and they often don't represent actual events.

It's getting worse and every night I have heart attack like events. Doctors say my rhythm is normal and wont do anything.

What does heart attack like events mean? Do you feel pressure on your chest? Heart skipping? Racing? What does "rhythm is normal" mean? When sticking his stethoscope of on your chest, or have they done some actual testing? For instance, have they had you wear a holter monitor for 48 hours?

I say heart attack like events because my doctors have said I have normal sinus rhythm albeit high heart rate. Also the symptoms that trigger these events make no sense to me or my doctor. We've never heard of the symptoms I'm having. Basically In my sleep I will have a acid sensation. Kind of a feeling like someone scrapped my entire back and neck and the whole thing is stinging. I will often as a result get extreme thirst, nausea and a high heart rate. It sounds like anxiety but it usually happens when I reach deeper stages of sleep. I got sent to a chronic pain program. My biofeedback doctor has pointed out that I do very well with controlling muscle tension... numbers can go under 1 (I don't remember what the measuring variable was, something like muscle electric pulses. 4 being normal and under 4 is ideal). I'm a medical mystery. My sleep doctor however is convinced I have full blown anxiety. I believe I have the same level of mental anxiety as any other person. My biofeedback doctor said I could bring the data to my doctors but honestly my sleep doctor is so fed up with me, he wont accept any answer other than I have anxiety.

I think I have poor communication and memory abilities and that leads to people seeing some kind of objective anxiety. Not sure if that means anything.

[lindalam89]

Step one - use your machine whenever you sleep. If you don't you are just undoing the good of using it in the first place.

I'm getting there. albeit very slowly. I've tried using my machine for full nights and I end up crashing after a few nights. It's a trade off. My doctor has said that sometimes Cpap increases more arousals than being off it. So I'm trying to meet a half way point by using it at least for 4 hours.

To give my doctor the benefit of the doubt. I think the reason he is insistent on not ordering a ASV is because he knows I have a hard time already sleeping on Apap. This sounds bad but although cpap I found has some benefits in that I dont get as much temporary spikes in heart rate. The machine does make it harder to sleep well and in the end I rather have a few passing moments of high heart rate, than to be sleep deprived to the point I get morning nerve pain and fatigue. I'm not sure if I will ever reach a point where I can use the machine for the full 8 hours on a consistent basis

[lindalam89]

If you are indeed having enough sleep onset centrals to keep bouncing you out of sleep then the centrals would be addressed by a machine like mine but the way the machine addresses it may also bounce you out of sleep because it would deliver a rapid large burst of pressure so the treatment itself could also cause you to wake up. Now for myself....I see evidence of a handful of those bursts presumably in response to a sleep onset central (never had centrals otherwise of any importance) and I sleep just fine through those bursts but then I have always been lucky in that I can sleep through some pretty dramatic pressure changes even on cpap/apap/bipap.

If you do elect to do it on your own you have to be prepared for some heavy duty education and also be prepared to buy the machine privately because it's unlikely you would ever get a doctor to give you a RX for it.
Should you elect to do that...we have a few forum members who might have an ASV machine available that has been gently used. If you buy it smart (for right price) and you find you can't tolerate it...you can always put it up for sale and not get too hurt on the price.

Sorry for the repeated posts. But BINGO. That is what i'm trying to get at. My "centrals" may not be real centrals but its apparent that the machine flags centrals when I wake up repeatedly. I was hoping to go on ASV in that maybe it would make sleeping easier.

Your recommendation to switch to the Airsense has helped a bit and every bit of help counts. I may not be a perfect sleeper. But I have noticed going on the airsense has helped me and I think going on a ASV may address the sleep wake transitions.

I'm just concerned because my doctor was very firm that it is dangerous for me to use a ASV unless I really had centrals. I was trying to explain, exactly what you've explained here. That I want to try a ASV because maybe it will help me from getting knocked out of sleep. Thus improving sleep quality

[Pugsy]

What makes the central evaluation extremely difficult is we don't know and have no way to know for sure if those centrals are truly real centrals (be it sleep onset or other) when someone reports a lot of sleep fragmentation because we have a real hard time figuring out if the central we see is an awake/semi awake tossing and turning pause in breathing or if you are really asleep briefly and then the central happens and bounces you out of sleep.

It's really hard to evaluate even when we can zoom in on the flow rate and look at the breath by breath flow rate around each central. Impossible to tell at the level shown in these reports.

Respironics machines do a separate wave form graph available in Encore that makes for much easier viewing and possible evaluation. Unfortunately ResMed flow rates have to be done manually and we can only do it in short segments and it makes for an already difficult evaluation process even more difficult.

I am the first to admit that I am not the greatest at determining awake status by the flow rate/breath by breath thing but if you want me to try I will try but I need to be able to import your data into my SH software and manually do it. If you want to help me try to figure out a way for me to get hold of the data on your SD card so that I can see that level of detail then we can try.
Essentially I need the files off your SD card so that I can use my software and pretend I am using your SD card files. Do you know how to maybe make a copy of your SD card then compress/zip it and then either send it as an attachment to email (if it isn't too large it can be done that way) or put the zipped file/folder on some place like dropbox where I can upload it?

Maybe we will get lucky and the flow rate will be easy to distinguish awake time vs asleep time. I can't promise anything concrete because I am not all that great at the evaluation process but maybe if enough of us put our heads together we can maybe come up with a consensus of what we are looking at.

Give me a little bit and I will see if I can get you a screen shot of where my breathing pattern changes from awake to asleep and it's easily seen to give you an idea of what I am talking about.

About ASV being potentially dangerous...yeah, it can be for some patients who have significant cardiac issues like congestive heart failure. It's a serious enough potential risk that patient's with known congestive heart failure issues are being advised to discontinue the ASV therapy because of increased mortality rates in a segment of those particular patients. So far it only pertains to patients with congestive heart failure issues and where their cardiac ejection rates are below a certain factor.