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Re: Suffering part 2: Lowered the EPR
Posted: Sat Jul 07, 2012 10:29 pm
by kaiasgram
I moved the flow limitation line up beneath the flow rate line and here are some closeups of some different-looking respiratory changes. Can you please tell me what you see? I should probably have included the pressure lines too, let me know if they'd be helpful and I'll redo. Thanks!
This first shot was from around 8:40 a.m. when I thought I was sleeping pretty peacefully.
These two shots are from the period of time shortly before I awoke from the "clicking" dream:

Re: Suffering part 2: Lowered the EPR
Posted: Sat Jul 07, 2012 10:48 pm
by avi123
[quote="kaiasgram"]Please stay with me here, guys, I really need your support.
Even though as Max said yesterday the primary problem does not appear to be apnea anymore, I still have a sleep disorder that is not yet diagnosed or adequately treated. And it is torturous at this point. Much worse than before I started CPAP. I hope you, my fellow pappers, will hang in there with me until this gets figured out. I'm pushing for some attention from my sleep doctor and trying to get a neurologist involved in this. So I'm not expecting anyone here to diagnose anything, just to keep sharing your thoughts and stay in touch here. I'm still willing to do some tweaking and I need to keep hearing from y'all. Many many thanks.
Comment,
kaiasgram, is it possible that there is nothing wrong with you but you post incessantly because you are hypochondriac?
Re: Suffering part 2: Lowered the EPR
Posted: Sat Jul 07, 2012 11:05 pm
by Diablode
It would be interesting to post around 3 AM, thats the time with the highest pressures and flow limitations. We might find a possible RERA
And avi123 since when is taking an interest in your medical health considered being a hypochondriac?
Re: Suffering part 2: Lowered the EPR
Posted: Sat Jul 07, 2012 11:12 pm
by Lizistired
I'll try to ignore avi, as he seems to be on a binge lately.
I think you should raise your minimum 1 cmh2o, and relax and get some sleep. It's looks like your flow is trying to flat line when your pressure is dropping but it's hard to see the other data. It's midnight and I have to get to bed.
Oh, the s9 doesn't score RERA's so I don't worry about them. I know I have more arousals than apneas, just like in my sleep study, but I don't know what causes them and there isn't anything I can do about them.
If you have time tomorrow, check out the ResScan tutorial in my signature. See if it looks easier to navigate., Unless of course your computer can't handle it.
Check for inverted pillows before you go to bed.
good night
Re: Suffering part 2: Lowered the EPR
Posted: Sat Jul 07, 2012 11:25 pm
by Lizistired
Another thing to remember about aerophagia...
The machine isn't blowing the air into you, you are swallowing it.
Re: Suffering part 2: Lowered the EPR
Posted: Sat Jul 07, 2012 11:44 pm
by kaiasgram
Lizistired wrote:I'll try to ignore avi, as he seems to be on a binge lately.
I think you should raise your minimum 1 cmh2o, and relax and get some sleep. It's looks like your flow is trying to flat line when your pressure is dropping but it's hard to see the other data. It's midnight and I have to get to bed.
Oh, the s9 doesn't score RERA's so I don't worry about them. I know I have more arousals than apneas, just like in my sleep study, but I don't know what causes them and there isn't anything I can do about them.
If you have time tomorrow, check out the ResScan tutorial in my signature. See if it looks easier to navigate., Unless of course your computer can't handle it.
Check for inverted pillows before you go to bed.
good night
Thanks Liz, and have a good night's sleep -- I appreciate your time and feedback. Oh, and I have just discovered the delight of the Foes List feature -- you can make nasty hostile old blowhards disappear !
Re: Suffering part 2: Lowered the EPR
Posted: Sun Jul 08, 2012 12:55 am
by the_nap_ster
Hi there,
I am someone who has graphs that look just like yours. It is not usual for me to have an AHI of 0.0 -- probably happens about 40% of the time. Leak lines are great, 100% compliant (and I do hate that word), and everyone says I'm a success story.
Except it took me about two months on XPAP to not feel WORSE than I did before starting therapy. I don't know if your problems are like mine, but I wanted to post to tell you you're not alone. And to tell you to hang in there, because you'll figure out the problem and it will get better.
For me, I had a million issues (the extreme pain from air in my stomach being the worst). But it was all secondary to arousals. I swallowed air because I was waking up. I felt crappy because I was waking up. And here is what I learned: even though I tried a bunch of masks that felt comfortable and didn't leak, SOMETHING about them was irritating me in my sleep. And I'll probably never know what it is. But even though I can't tell the difference when I'm putting it on, I guarantee you that the headgear of the Swift FX (both the gender-neutral and the women's) will make me wake up bloated and nauseated, exhausted in the morning. The Bella Loops? No problems. I have a whole list of "looks good in Sleepyhead but don't work for me" masks. And it took me comparing a bunch of them -- 10+ now -- before I realized that.
So I guess what I'm saying is... even though you think it's not the mask, it might be the mask. And that's actually really good news, because it's something you can control. So it might be worthwhile to mentally know you have more to experiment with, and IT WILL GET BETTER.
In the meantime, be gentle with yourself and take care of yourself as best you can. You're in my thoughts.
Re: Suffering part 2: Lowered the EPR
Posted: Sun Jul 08, 2012 1:26 am
by kaiasgram
the_nap_ster wrote:
So I guess what I'm saying is... even though you think it's not the mask, it might be the mask. And that's actually really good news, because it's something you can control. So it might be worthwhile to mentally know you have more to experiment with, and IT WILL GET BETTER.
In the meantime, be gentle with yourself and take care of yourself as best you can. You're in my thoughts.
Thanks so much napster -- I'll keep the mask issue in mind. My Aloha feels so comfortable that I wouldn't have considered it as a potential interference with my sleep, but if I don't see some improvements in time with tweaking my pressures a bit, I'll re-evaluate my mask. And thank you for the encouragement and support.
Re: Suffering part 2: Lowered the EPR
Posted: Sun Jul 08, 2012 4:07 am
by zoocrewphoto
So, if your bed is all ramped up, are you sleeping on your back all the time?
Before I demanded a sleep study I went throught the same crap with my dr, wanting to give me nexium... I started reading about it, diet and raised the head of my bed, and then stumbled upon and article about UARS, (upper airway resistance syndrome). Duh. Fit me perfectly. Haven't had a problem with it since I got on cpap.
I really think when your airway closes your lungs suck the acid up from your stomach. Well, mine anyway.
I used to wake up choking and gasping. I would then choke up some acide reflux which would burn. And a couple times, I inhaled it. Sometimes, I coulnd't stop choking until I vomited. I assumed I had acid reflux.
Since I started apap treatment 10 weeks ago, I haven't had a single case of gasping, choking, or bringing up acid reflux. I think my gasping for air was causing a spasm that would bring up anything that was available.
I do sometimes have a burning feeling my throat during the day, and I have found that eating a couple almonds will stop that sensation. So, I haven't taken an antacid in several weeks. I used to take zantac 150 every night and about half the days. It is so nice not have that problem anymore.
Re: Suffering part 2: Lowered the EPR
Posted: Sun Jul 08, 2012 10:11 am
by DoriC
avi123 wrote:kaiasgram wrote:Please stay with me here, guys, I really need your support.
Comment,
kaiasgram, is it possible that there is nothing wrong with you but you post incessantly because you are hypochondriac?
Avi, please explain to me what you're trying to accomplish by being mean, rude and obnoxious to Kaia and others?? She is the perfect example of what we're all doing here,trying to help her and other people who are struggling. You've always been treated with courtesy and some very good assistance has come your way from many of us, but you're not at all grateful. I have a feeling that this is your real nasty personality before and after cpap treatment (if it's really even working for you). I know most of the forum just laughs at you and ignores you and thinks of you as an old,cranky codger but you're really annoying me and hurting those who are so very overwhelmed and suffering and reaching out to us. Your comments are not welcomed. I'm asking you in the nicest way possible...Please stop what you're doing!
Re: Suffering part 2: Lowered the EPR
Posted: Sun Jul 08, 2012 12:11 pm
by 49er
DoriC wrote:avi123 wrote:kaiasgram wrote:Please stay with me here, guys, I really need your support.
Comment,
kaiasgram, is it possible that there is nothing wrong with you but you post incessantly because you are hypochondriac?
Avi, please explain to me what you're trying to accomplish by being mean, rude and obnoxious to Kaia and others?? She is the perfect example of what we're all doing here,trying to help her and other people who are struggling. You've always been treated with courtesy and some very good assistance has come your way from many of us, but you're not at all grateful. I have a feeling that this is your real nasty personality before and after cpap treatment (if it's really even working for you). I know most of the forum just laughs at you and ignores you and thinks of you as an old,cranky codger but you're really annoying me and hurting those who are so very overwhelmed and suffering and reaching out to us. Your comments are not welcomed. I'm asking you in the nicest way possible...Please stop what you're doing!
I totally 2nd what Doris C has said in her excellent post Avi. I hope you will listen.
And you know what Avi, if Kaia was a hypochondriac, which she definitely isn't, she would still deserve the utmost kindness.
49er
Re: Suffering part 2: Lowered the EPR
Posted: Sun Jul 08, 2012 12:37 pm
by kaiasgram
Dori and 49'er, Thank you for your words of support, it helps to know someone's got your back when you're down. In the short time I've been a member of this forum I've seen that avi tends to go after people when they are most vulnerable which is very sad. He has made even more cruel remarks to others than the one he made to me last night. The last thing any of us in this community need is someone spewing toxic energy around, so I have chosen to block further posts from him.
As for everyone else, including those with whom I've had some disagreements, thank you all for being here with the best of intentions.
Re: Suffering part 2: Lowered the EPR
Posted: Mon Jul 09, 2012 10:24 am
by Lizistired
How is it going?
I was thinking something else you need to try is turning off the electronics at least an hour before you go to bed. Get off the computer, turn off the tv and leave the smart phone alone.
Give yourself some wind down time.
Re: Suffering part 2: Lowered the EPR
Posted: Mon Jul 09, 2012 12:01 pm
by Suzjohnson
Good advice Liz! I might add sitting in a dim room, listening to soothing music is also beneficial. That shut down time before climbing into bed can make or break my sleep quality.
Suz
Re: Suffering part 2: Lowered the EPR
Posted: Mon Jul 09, 2012 3:51 pm
by kaiasgram
Liz and Suz, thank you both for your suggestions and for checking in again. I'm working on my evening wind-down time. I'm used to seeing therapy clients until 8 p.m. and getting home from work close to 8:45 or 9:00, so my whole circadian rhythm is a bit different than for 9 to 5 folks. Right now, though, I'm hardly working at all so I'm trying to shift to an earlier bedtime and to get quieter (and get lights dimming) earlier. Since I use nasal pillows I'm also able to wear a sleep mask which has really helped me to crank out some melatonin and get to sleep fairly quickly most nights. What's confusing is that sometimes I wake up in the morning feeling like my system is calm and I've had a long stretch of what felt like decent sleep, however as soon as I get up I realize I'm already running on empty.
Liz, I've been taking a much closer look at my flow lines since you suggesting zooming in on them. I do see a lot of wacky patterns, and I also see some flatlining, sometimes it appears to be just under the 10 second mark. So I may still be desatting and I may also have RERAs interfering with my sleep. I've bumped up to min pressure 6.6, aerophagia increased some but not unbearable (though the "puffing out" of air from between my lips started interrupting my sleep). I read some yesterday about UARS and holy moly, the profile fits my history and symptoms. So I'm doing my best to work both sides -- pushing for more help from my doctors and working on what I can change/improve on my own.
If you or anyone else has a good example of what a RERA looks like on the flow line I'd really like to see it. The flattening that looks like a "mini-apnea" is easier for me to spot, but I'm less clear about the appearance of a RERA. My smooth waveform, when it changes, looks chaotic in places but I don't know what if anything it indicates.
Thanks again for all your help and thoughtfulness.