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scary apnea symptoms and overwhelmed with data
#1
Question 
Hello,
I recently downloaded Rescan. Thank you to the apnea board ! I have been reading a lot of posts trying to learn.
I am new to the board and to trying to take an active role in my treatment . This is my very first post ever to any type of forum, social media etc... I am not new to CPAP. I had my machine for almost 4 years. I have struggled the whole time having problems adjusting to it and not feeling well at all and with feeling very alone.... I am so glad my NEW Dr. recommended your board! I was so surprised. He even recommended I download the software. My former DR. only looked at compliance and AHI and always said everything is good, even though I felt bad all along. Is this the usual for a DR. to only concern themselves with compliance ?

My New Dr. said to put it on Auto Mode, 7 to 13, but woke up in the middle of the night and put it back down to straight 7 cm of pressure because I keep waking up. I then put Auto back on a tighter range a few days later ( After reading alot of posts), 7 to 11cm that is where it is now. 95% of pressure is 9cm, median is 7.6 cm max is 9.7cm.

My AHI has always been in "normal limits" , Although the AHI for 4am to 6am ranges anywhere about 3 to 10 AHI. .... It seems to be only CA 's..... . And sometimes I struggle to go back to sleep... I have been on auto mode for about 2 weeks so I figured that the CA's should have gone down by now. The CA's usually come around when pressures are at 7cm or 8 cm range at 4am to 6 am , so I dont know what to do or make of it.
So now, I am very concerned and confused on what to do with all this data.
and nervous about my weird symptoms.
MY symptoms are Chest discomfort on waking and headache when I wake and Neck spasms and throat muscular soreness on waking like I'm wearing a really tight scarf ! breathless with heart racing sometimes...., the neck tightness and spasms on waking improved a little bit over the 3 weeks on auto mode.

Does anyone else have symptoms like this ?? Or is it just me? I read a lot of posts and I really haven't seen anyone with symptoms like this...Unsure

Sorry, I am still trying to figure out how to upload images.... I cant seem to find an attachment button..
Can someone advise on anything ??

Thanks In advance.
Evie1
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#2
Hi Evie1, welcome to Apnea Board, and congratulations on your first ever post.

Your new doctor sounds like an enlightened physician - most people here seem to experience medical staff who either don't understand our condition or don't really care all that much. So look after this doctor - he's unique!

A few questions about your central apnea - Are the CAs a new development since you went onto autoset, or have you had them previously? Or have you only just seen them now since you've been using the software? ResScan should allow you to see your previous data including events etc, so it would be interesting to know when the centrals started. In my own case, I also had a lot of centrals with big clusters in the 4 - 6am period (but centrals all night long as well). I eventually changed to an ASV machine which cured them totally. However they are very expensive and your insurance company will make you jump through hoops to get hold of one.

On the other hand it's not unusual to get centrals during the transition between sleep and wakefulness - this might be what you're experiencing.

I'm not sure what to say about your other symptoms, as I haven't seen anybody else here have similar. Have they just started with the change to autoset, or are they long standing? If you haven't already done so, I would get your heart condition and blood pressure checked, just to rule out anything nasty. However, I suspect it's some kind of reaction to the higher pressures. Perhaps the best thing is to tighten up the range so that min is 7 and max is 8 and see what happens. If that's comfortable, bump up the maximum by 0.5, waiting a week between changes. That way your body will acclimatise to the higher pressure and you will also get an idea of what is optimal for you.

You won't be able to post images until you have a few more posts under your belt - it's a necessary rule to help keep the site free of spammers.

Hope this helps - no doubt other members will have some further advice.
DeepBreathing
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#3
First off... don't be scared. You have taken the first steps toward be an active part of your care.
I'm not going to comment on the symptoms you describe; as frankly I don't know.

As for a cluster of CAs in the early morning -- does not seem an issue. Perhaps it is during REM sleep; or near waking when the consious mind is taking over breathing.

You cannot post attachments or links until you have a few more posts. This is by design to prevent "drive-by" spammers.
Then the best way to do it is not by attachment; but by opening a free account on photobucket under a nom de plum and pushing images to their site. Then you post a link in your message with the URL of the image between the HTML tags [img] and [/img].

Wait for more replies.
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#4
Thank You for your responses.

I looked back and found I had more centrals than OA all along , but I can only see statistics, not detail data. So I cant really see what and when things happened. This is because I did not have the card in for about a year because I was getting error messages when I put the card in. the DME said to just take it out. It sounds similar to you DeepBreathing, with more clusters later . But it seems the longer on Auto the more I have those clusters, instead of decreasing AHI , my AHI is increasing, due to centrals only.....

Im gonna make appt. with cardiologist regarding chest discomfort, for sure. But I think it is the machine pressures like you said. I do a lot of deep breathing exercises before even getting out of bed because I feel I need air. I had these symptoms but much worse BEFORE I went Auto, can it be just irregular breathing in the night? I remember my original PSG sleep study mentioning something like that, but it said it could not characterize it the pattern of irregular breathing.
I have variable High Blood pressure many years now , high at times and sometimes just borderline. I was taken off the meds but may have to start it up again.
I believe I was misdiagnosed many years ago, about 12yrs, because of my tiny frame and weight. Dr. just said new mom, tired, normal. Im 5' 1 , 100 lbs soaking wet. At the time of dx I was probably 94 ish. Maybe the pressures are tough on small body? I dont know, just thinking out loud.

thanks again for your responses ,
Evie1
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#5
Hi Evie1,
WELCOME! to the forum.!
I'm sorry you are having such a rough time with CPAP therapy,but just stick with it and hang in there for more suggestions.
Much success to you as you continue and finetune your CPAp therapy.
trish6hundred
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#6
You might just go back to 7 if you were more comfortable, see if things settle down and then start changing the settings more slowly.

Remember centrals aren't necessarily more harmful than obstructive, just harder to eliminate. Also, be sure to look at the flow rate waveforms and see how long and how total the centrals are. An 11 second central is a lot less worrisome than a 30 second central.
Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
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#7
Evie, I think the chest symptoms might be caused by not being able to exhale well enough against the pressures.

I like the range you have established, but I think you might be well served by turning EPR on, and to a setting of 2. That will allow for an exhale pressure of 2 less than the inhale. So if your inhale is at 7.6 for instance, your exhale will be at 5.6.

EPR can be set to 1, 2, or 3 on your S9. I think I'd start with 2, because you are scoring some CA's. Sometimes when people start with EPR the CA's can go up a little, if they are true CA's, which in your case I'm not sure at this point. By limiting to 2 you should be fine, and if it works out well, you can go to 3 later on.
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#8
Welcome to the forum Evie1.

I agree with what everybody else has said. Additionally, I would recommend that you consider installing Sleepyhead for analysis. I have both but find Sleepyhead to be more detailed and informative compared to ResScan. Archangle's post has a link to download Sleepyhead.

Good Luck!
______________________
Useful Links -or- When All Else Fails:
Posting SleepyHead Charts in 5 Easy Steps
Robysue's Beginner's Guide to Sleepyhead
Apnea Helpful Tips
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#9
(02-06-2015, 09:20 AM)Evie1 Wrote: ...My New Dr. said to put it on Auto Mode, 7 to 13, but woke up in the middle of the night and put it back down to straight 7 cm of pressure because I keep waking up. I then put Auto back on a tighter range a few days later ...

My AHI has always been in "normal limits" , Although the AHI for 4am to 6am ranges anywhere about 3 to 10 AHI. .... It seems to be only CA 's... I have been on auto mode for about 2 weeks so I figured that the CA's should have gone down by now. The CA's usually come around when pressures are at 7cm or 8 cm range at 4am to 6 am...

You seem like a bright person, so I think you will be able to figure this all out.

When I was 5-20, I had a couple nights where I got woken up when the pressure went to 18-20, and it seemed more like xPAP runaway than the machine responding properly to events (at least looking at it in SleepyHead) so I topped it off at 14 to prevent that, and it has not done it since. I have the same machine you have.

My sleep doc said "straight 8", which I tried for a while, then tinkered with 8-14 and then 10-14, and each change lowered AHI significantly (now 1.8) over the last 5 months.

The little graph that shows what pressure was when events are happening in SH (the lowest graph on the page) can be a little misleading, as it refers to exhalation pressure rather than inhalation pressure, so if you have EPR on, it subtracts that from the inhalation pressure (which is what the xPAP is set to). So if you have EPR on and set to 3, an event that happens at an inhalation pressure of 10 will register there as happening at a pressure of 7, so you have to make that leap to really know what pressure events are accumulating at. Kind of a gotcha, as one would expect such a graph to track the inhalation pressure that the xPAP is set to.

Another thing that I think is a good idea is that when you wake up, for me a process that can take 10-15 minutes before I get physically out of bed, as soon as you are sure you are not going to fall back to sleep, either take the mask off (allow auto-stop to kill the blower) or stop the machine.

The reason I recommend that is that wrassling around and changing position as I wake up seems to mean my breathing becomes irregular while doing that, very naturally, and the machine sometimes flags that as hypos or CAs, which are then actually false positives. There is no EEG so the xPAP has no idea whether you are asleep or not, and still flags what it perceives as events.

If you extend that line of thinking, this means that every time you change position during the night could be triggering your xPAP to flag false positive events.

*****************************
Now, about the CAs; I think CAs are definitely scarier than OAs because OAs are a logistical issue, a physical blockage that can be prevented with xPAP, and have nothing to do otherwise with your CNS's attempt to breathe normally. The "central" in "central apnea" refers to events that are considered failures of the central nervous system to attempt to breathe normally. That, to me, is scary.

But I think there are a lot of false positives there. I had virtually none in my home test unaided by xPAP (AHI of 55.7, CI under 1, HI under 3), but I have had about twice as many CAs as OAs every single night on xPAP, at any pressure. So they are not coming from me, they are coming from the xPAP. And others report much the same thing.

And lowering the top IPAP range pressure is supposed to lower CAs indicating that higher pressure causes more CAs to be reported. And it seems, from my experience, that xPAP pressure causing CAs is behind that, and that it is causing false positives at lower pressure too, just fewer of them. There is some sort of mechanism at work here causing CAs to flag that may not actually be CAs.

It does not make sense that pressure can interfere with the nervous system's respiratory response; it's not like therapeutic pressure can prevent you from exhaling, or even inhaling; respiration continues regardless.

The part of respiration that induces you to inhale is because respiration feedback knows when you need to, and possibly pressure fools that by causing more oxygen to circulate via the turbulence of the Venturi effect which means more oxygen molecules reach receptors in the lung even after reaching past the top of the flow waveform than would normally, so your body has what it needs and does not induce another breath as quickly, and maybe that fools the xPAP into seeing that as a CA if that extends the time between breaths long enough.

The term "stopped breathing" is a misnomer, and should probably be referred to as "paused" or "delayed breath". Its not like you actually "stop breathing", because if you did "stop breathing" you would no longer be here.

My only disclaimer here is that I honestly have no informed idea regarding why false positives for CA occur, but many people still do report this. I am only speculating because no one seems to be able to answer why I have CAs with xPAP that never existed without it. xPAP doesn't even treat CA because it can't. Certainly none of this is definitive proof, but there is also no definitive disproof of this theory. Respiration that is good enough to prevent significant desat is not always a perfect repetitive waveform over 300-400 breaths, even in non-sufferers. So I would take the CAs reported with a giant grain of salt.
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#10
(02-06-2015, 12:39 PM)retired_guy Wrote: Evie, I think the chest symptoms might be caused by not being able to exhale well enough against the pressures.

I like the range you have established, but I think you might be well served by turning EPR on, and to a setting of 2. That will allow for an exhale pressure of 2 less than the inhale. So if your inhale is at 7.6 for instance, your exhale will be at 5.6.

EPR can be set to 1, 2, or 3 on your S9. I think I'd start with 2, because you are scoring some CA's. Sometimes when people start with EPR the CA's can go up a little, if they are true CA's, which in your case I'm not sure at this point. By limiting to 2 you should be fine, and if it works out well, you can go to 3 later on.

Hi, I forgot to mention , I have EPR setting 3. I tried to lower it to 2 , but was very uncomfortable and changed it back in the middle of the night. I may try it again.
Thank You for the response, I appreciate it.
Evie1
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