New CPAP User and member (waiting for activation)

[John Richardson Non-Active]

Hello all, I’m a new user and I’m hoping that someone on this board could provide me some insight. I realize I only have sporadic data so far. I have done my best to follow the FAQ’s. I do not seem to have flow limit graphs. I apologize in advance for any mistakes or omissions I have made and will be happy to upload more data necessary ASAP.
I have not yet had a sleep study done – I have read through the boards and I realize that is preferred, and without getting into the details that hasn’t happened yet.

I have seen an ENT and allergist (which the pulmonologist would not see me until I went there first). They did not see any structural abnormalities (ie polyps, deviated septum, enlarged uvula etc.) except for a nasal valve collapse which he did not feel needs to be operated on. I have non-allergic rhinitis and I am frequently clogged up at night. Like many, the side I lay on gets clogged, while one nostril remains open.

When using nasal netipot and breathe-right strips I can get a fairly decent night’s sleep, but I suspect I have sleep apnea, as does my brother and father. I have issues if I sleep on my back where I have woken up gasping for air, so I have trained myself to sleep on my side. I have self-diagnosed sleep paralysis.
I am using a Nuance Pro. My setting on the machine is for 1x. I tried the small pillow the first night, the medium the next and the large (which seems to allow the best airflow on the final night). I still feel as if they aren’t very comfortable.

The first image, at around 6pm, I was testing out the headgear and trying to figure things out for the night. I attribute the first part to sleep wake junk. I am having a hard time trying to figure out and / or filter out sleep junk. The third image I was tossing and turning the entire night and could not sleep at all. It was my worst night yet. You can see where I had to stop therapy altogether. I have no idea if some of these are real events or again junk since I was up sporadically.

I am concerned about the centrals, but they don’t seem to happen in the areas where I am truly asleep. I attempted to raise my minimum pressure to just below the optimal level where I seemed to have been preventing any apnea events. I increased the minimum because I felt that 4/5/6 was preventing me from breathing easily when trying to fall asleep. I initially lowered from an open ended 20 to prevent run-offs. (concerns about if I truly had centrals). On the third night when adjusting constantly (or removing the mask), it took advantage of the higher max limit I had raised it too.

The third image/ night I dialed Aflex down from 2 to 1. Tonight I intend to have Aflex off completely (to see if this affects the pulsing).
I have had troubles getting used to the nose pillows and the way they sit on my nose along with the proper humidity (was 2, now up to 4 for tonight).
When I’m waiting to fall asleep (even if I use the ramp feature) it seems to log all this sleep wake junk (as I alluded to above) and it makes it very difficult to decipher because I am waking up throughout the night as well and can’t remember at what periods I am up or asleep. I have tried to turn the machine on and off when I thought I could fall asleep (only to fail at that), but it’s a hassle to put the headgear on and off so I would just sit there waiting to fall asleep. Apparently I breath very slowly when awake and the machine keeps interpreting these as events.

Furthermore, the machine annoyingly and constantly is sending out these test pressure pulses. I have only found one post on this topic
The pressure pulses happen randomly and I feel stressed that I need to increase my breathing rate while awake, artificially, so they don’t happen. You will see they don’t seem to show up too often or at all when sleeping. They prevent me from falling asleep because they are so uncomfortable. I do not know what to do to stop them. It almost feels like the machine (new) is broken. Would a different mask type help minimize me feeling them? I believe that is one of the biggest reasons I can’t fall asleep. They push extra bursts of air that are so strong just as I am about to exhale. I am constantly inhaling and exhaling but apparently, the device is not picking up that I am exhaling because as I am I get the pump of air.

I’ve gotten very little sleep in days so apologies for any ramblings. I truly appreciate any comments, etc. that you can provide as I am desperate for some healthy sleep.

Apparently since I have not been approved (I registered a few hours ago) as active I can not post my images. Since I can not login to set my profile, I have a new dreamstation apap 500t11 w/humidifier - nuance pro headgear

[jagzoo]

If you posted screenshots - they aren't showing up. There is a posting explaining how to do that. Then someone knowledgeable will certainly respond.

[Julie]

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[Pugsy]

Welcome to the forum.

About the flow limitation graph...that's for ResMed machine users. You are using a Respironics machine and it doesn't do a flow limitation graph. Instead it just flags them on the Events graph.

Are you talking about the saw tooth spikey looking pressure things on the pressure grahp??? If the test pressure pulses annoy you the only way to stop them is to change over to fixed pressure. Set your minimum to equal the maximum when in auto mode will do it.
They really aren't that big though 1.5 cm increase and decrease over several minutes. They don't happen nearly as quickly and the graphs make them look like they are happening.

Or are you talking abut the pressure pulses used to distinguish between centrals and obstructive stuff??? Those are tiny puffs of air and only last for a brief second maybe. Some people do find them annoying though and unfortunately there is no way to stop them except by stopping whatever is happening to cause the machine to need to figure out obstructive from central.

I am concerned about the centrals, but they don’t seem to happen in the areas where I am truly asleep.

If you aren't asleep there is nothing to be concerned about at all. The machine doesn't have anyway to know if you are asleep or not. It just measures air flow and it's quite common for our breathing (air flow) to be really irregular while awake or semi awake...and the machine flags it.
Even if you were asleep a few centrals here or there isn't a big deal. It's normal to have a handful over the night for various reasons.
But if you are for sure awake...they have to be removed from the evaluation process because awake stuff simply doesn't count.

Sounds like you are using SleepyHead. If you turn the machine off and back on again it will create a new session each time you turn it off and back on and you can turn off a session and remove that session from the data...but you have to turn the machine off and back on again so the awake stuff is in the separate session.
Scroll down under the statistics on the daily detailed page and you will see the sessions. To turn it off just click on one of the session and turn it from green to red. This will omit that session from all calculations.

Or if not a separate session you can highlight just as segment of the Events graph minus the known awake time and the AHI numbers under the Events graph will change.

So if you lay there for a while and can't go to sleep...reach over and turn the machine off and then right back on again (takes half a second..don't remove the mask)...then you can easily remove the known awake time from the evaluation of the data using the session removal. Plus it makes it much easier to spot known awake time and any events real close to the on/off thing are probably SWJ.

AFlex setting...comfort only. Use whatever feels the best to you no matter the number or even try it off to see if you like it or not. Play with all the settings including off and use whichever you feel seems to feel better or more natural to you.

Once you get formal member acceptance you will be able to post your images. You have to be a member and be logged in to post links or images.

[John Richardson Non-Active]

Thank you all so much for the quick replies. I have spent hours digesting the information on this board and I can't express how reassuring it is to have such a great (and well informed) community. However, I am quite stressed out over all of this at the moment because I feel as if things are worse. I'm barely thinking because the last 3 days of forcing myself to adjust have resulted in very little sleep.

Pugsy: I do mean the pressure pulses that are used to distinguish the centrals and obstructive stuff. That is what they are called in the event charge. I find them unbearable - because I am breathing and as soon as I breath out, it blasts a puff of air. I thought the machine was broken. As soon as I get activated I will post the screen shots (good to know that there is no flow limitation graph). You will see that I get tons of these, and I can't seem to fall asleep with them. I thought a different mask might diffuse it (for example if I had a hybrid) the air wouldn't be so concentrated in my nose.

The only reason I am messing around with the Aflex is that I was hoping it might dissipate the pressure pulses.

I can force the machine into straight CPAP mode, but I'm guessing the recommendation to match min and max is so the EPAP pressure will continue to be variable, is that correct? I do not mind at all the variance in pressure as you might mean in the former part of your post (they happen slowly over time and I'm cool with those). it's the quick rapid bursts.

I'm going to try to sneak the images (3 days worth) here because I'm in desperation mode for some input:

imgur[dot]com/ZlPocng
imgur[dot]com/66VR5ti
imgur[dot]/iKahqgy

[Pugsy]

Do you take any medications? If so what?
Do you normally have issues falling asleep...staying asleep?

If you didn't have a sleep study...how did you come to have this machine? Any chance anyone you know might have a ResMed machine???

Even going to cpap mode won't stop the pressure pulses. Most people don't even notice them but some do and looks like you are one of those.
There's something with your breathing while awake that is making the machine think that there is some sort of flow reduction going on and that's why it is doing the pressure pulses so that if it has to flag something (meet criteria for the flag of whatever) it will know what to call it.

Your centrals...they could be awake centrals since you report not sleeping well at all. They could be post arousal centrals...sort of SWJ but because the OAs are causing arousals....if we could fix the OAs better then if (Big IF) those centrals are post arousal...eliminate the arousal and eliminated the central.

We have to get you some solid sleep first so that we can try to figure out how much of all this is SWJ and how much is real.
I am not going to pooh pooh off all those centrals right now but we can't fix them with this machine so instead let's concentrate on what we can fix with this machine and see if we get lucky and those centrals are either SWJ or post arousal centrals.

How about trying 7 or 8 minimum pressure? Doesn't really matter what the max is right now...what you have it set at now is fine.
I would like to see if holding the airway better in the first place will hopefully not cause the machine to want to send those pressure pulses which is making it impossible for you to fall asleep. Also if those OAs are real...it would better prevent them and if those centrals are post arousal....maybe get lucky and the centrals go away if the OAs go away. A lot of IFs and maybes but right now that is all we can do with what we have right now.

Let me see if I can get the images posted for you. The last one...I couldn't get it to work for some reason but I got the first 2.
Looks like I can get the links but can't embed the image even using the IMG brackets. Oh well. This is better than nothing.

http://imgur.com/ZlPocng

http://imgur.com/66VR5ti

[John Richardson Non-Active]

thanks again Pugsy. since I can't use the quoting function, I'll do my best to answer your questions inline.

"Do you take any medications? If so what?
Do you normally have issues falling asleep...staying asleep?"

I do not currently take any medications. I do have a Vitamin regimen, mostly only d3,b12,b6,tmg,magnesium,zinc

"If you didn't have a sleep study...how did you come to have this machine? Any chance anyone you know might have a ResMed machine???"
I bought it direct/cash.

"Even going to cpap mode won't stop the pressure pulses. Most people don't even notice them but some do and looks like you are one of those."
yes, it's very noticeable, but probably because of my awake breathing pattern, which is slow and calm IMO. not sure why it doesn't detect the exhale, because I am exhaling usually when it pulses.

"There's something with your breathing while awake that is making the machine think that there is some sort of flow reduction going on and that's why it is doing the pressure pulses so that if it has to flag something (meet criteria for the flag of whatever) it will know what to call it."
I 100% agree with you. i felt maybe the nose pillows were obstructing a bit. the angle of the holes is not exactly perfect on any of the sizes. standing up things feel great, but laying down I get the nasal blockage and I think that complicates things. the humidification helps obviously, and I'm pretty confident the air is getting in.

"Your centrals...they could be awake centrals since you report not sleeping well at all. They could be post arousal centrals...sort of SWJ but because the OAs are causing arousals....if we could fix the OAs better then if (Big IF) those centrals are post arousal...eliminate the arousal and eliminated the central."
you make a very good point, let's hope. Recently within the last few months or year, I have been waking up more and more throughout the night. Sometimes when I fall asleep it feels like my heart/breathing everything stops. it's like I catch myself in the state of just falling asleep and I am consciously aware of it. that's obviously a crappy feeling and so I have worked to just relax and let it go (not control it) and I normally can fall asleep.

"We have to get you some solid sleep first so that we can try to figure out how much of all this is SWJ and how much is real.
I am not going to pooh pooh off all those centrals right now but we can't fix them with this machine so instead let's concentrate on what we can fix with this machine and see if we get lucky and those centrals are either SWJ or post arousal centrals."

"How about trying 7 or 8 minimum pressure? Doesn't really matter what the max is right now...what you have it set at now is fine. "

the third night I did set the minimum to 7, it is noted on the third night chart but for some reason you can't read it. I'll set it to 8 tonight and open up the max. I'm not sure why the link isn't working. I very much appreciate the repost. I just checked the link via incognito and it comes up for me.
imgur[dotcomslash]iKahqgy

"I would like to see if holding the airway better in the first place will hopefully not cause the machine to want to send those pressure pulses which is making it impossible for you to fall asleep. Also if those OAs are real...it would better prevent them and if those centrals are post arousal....maybe get lucky and the centrals go away if the OAs go away. A lot of IFs and maybes but right now that is all we can do with what we have right now."
there is some evidence of this in the periods where I am asleep and sleeping well, so you may be on to something.

"Let me see if I can get the images posted for you. The last one...I couldn't get it to work for some reason but I got the first 2.
Looks like I can get the links but can't embed the image even using the IMG brackets. Oh well. This is better than nothing."

thanks again for your attentiveness, it is very much appreciated.

[Pugsy]

Okay. Today I can get the link for the 3rd night to come up for me. Last night it wouldn't.
http://imgur.com/iKahqgy

We don't need snore, resp rate and tidal volume graphs. So next time omit those and let your other 4 graphs be larger.

Where do you live?

Let's see if using 8 min and opening the max made things better or worse.

[John Richardson Non-Active]

Hi I tried to fall asleep for over 2 hours last night starting at level 8. The pressure pulses happen when I'm trying to fall asleep or just as I may have fallen asleep so I never get to sleep. Additionally because it thinks I'm having events when I'm awake, all the while the hunt and peck routines are cranking up to nearly 15, which I don't think I need, as when I did get some sleep the first night, things seem to settle in around 9 or less. The combination of being at such a high pressure while awake, along with the pressure pulses further prevents the sleep - like an endless cycle.

Since the entire night (except 10 minutes) last night is SWJ because of this issue, I am not providing a link.

Turning off the Aflex did seem to help, and I think it's because the pressure drop that happens on exhale is eliminated so rather than 3 levels of air (the quick pulse is the third), I have just 2 - so the difference in pressure is not so drastic; yet still too much to allow me to fall asleep. I am really trying, spending up to 2 hours lying in bed waiting to fall asleep, until ultimately I had to shut it off and take the mask off.

I was thinking of forcing straight CPAP mode tonight, but I do think I want the benefits of allowing it to hunt and peck (not pressure pulse, but search for the optimum pressure) when I'm asleep to slowly raise the levels if/when/in anticipation of/ need be and then slowly lower back down to baseline when I don't. I'm not sure if straight CPAP mode will turn off these pressure pulses, but clearly they would turn off the automatic portions that would still be beneficial to me. I can find no option within the machine to help.

[Pugsy]

You can't turn off the pressure pulses. They are going to happen in cpap mode also but you can severely restrict the pressure increases in an effort to remove that annoyance since it disturbs your sleep.

If you go to cpap mode the Flow limitation flagging is turned off so if you do that you won't see any FL flags on the events graph. Doesn't mean they didn't happen...just means the machine doesn't record them in cpap mode.
That's why I usually suggest people keep Respironics machines in auto (apap) mode but set the minimum to equal the maximum if they are wanting fixed pressures. It will then function like it was in cpap mode and not vary the pressure but the FL flagging will remain on and if they happen you get the flags.

You might do better with a ResMed machine. It doesn't do the pressure pulses to help it figure out central vs obstructive. It uses something called FOT Forced Occilation Technique instead. Some people say they can feel it also so I don't know if you would or not. I have used both brands of machines but I have never felt either the pressure pulses or the FOT kick in.

Another option is to use auto mode but with a severely restricted range so the machine won't roam around so much. Like maybe a 2 cm range.
The disadvantage to using fixed or severely restricted range is of course a person would have to use higher pressures all night instead of part of the night but in your situation that might be less of a problem then the roaming around causes. Until you actually get some real solid sleep we won't have any idea what pressure you might need all night. If you want to try that start at 8 or 9 and move upwards if you actually sleep and you see a lot of OAs or hyponeas. The centrals we still want to keep one eye on but since we can't fix them with this type of machine we have to just try to fix what we can with this machine (the OAs, FLs, snores and hyponeas) and then once those are dealt with then evaluated the centrals and decide if there's enough of them to be a problem or not.

I don't know what is going on with your breathing that is causing the machine to need to do the pressure pulses and/or increase the pressure while you are awake. Your airway shouldn't be collapsing while you are awake so the pressure pulses shouldn't be happening while you are awake and the pressure shouldn't be increasing either. Are you by chance having much nasal congestion which could maybe fool the machine?

[jonathan richardson]

thanks for the information on the ResMed. I wonder if I would feel the FOT.

I will restrict the range tonight. I agree that the disadvantage is needing a higher range when I don't need it.

I really would like some solid sleep, but I don't see that happening any time soon.

They happen like crazy, so maybe my congestion is that bad - however, as soon as I fall asleep they disappear. That makes me think the machine isn't faulty. I don't understand why it can't detect the exhale. It happens almost toward the end of my exhale (the quick pump of air). When I'm asleep my breathing is more rapid. If I fake it and force myself to breathe faster when awake, it doesn't happen. I don't feel clogged when awake but I do feel as if I have to rush my breathing pattern.