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Clueless Nube - Unidentified Apnea Events
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robysue Online
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Post: #11
RE: Clueless Nube - Unidentified Apnea Events
(05-16-2016 10:51 AM)plainhat Wrote:  Thanks to all of you. Feel free to move this somewhere else if need be.

Here's the thing -- setting rant tags on Hate-cpap -- I've weathered through most everything with a wry sense of humor: lupus, cancer, diabetes, gall bladder, thyroid shutdown and this very unusual thing where I had a second degree heart block, passed out and went into convulsions when I SWALLOWED. That last I could do a good stand up routine on :-) Oh, oh, Oh yeah, and then there was the defective pacemaker that had to be replaced. So I'm a pretty resilient gal and smile more than I gripe (or at least laugh when I gripe). It has never occurred to me to ask , "why me?" Honestly, I realize on some level that if my good luck was as good as my bad luck is bad, I'd have hit the big lottery jackpot by now, but I figure it all just means I don't generally sweat the small stuff. . . until now.
So you've got the proper credentials for being able to say: I don't usually rant. Smile

Quote:For some reason, this CPAP thing just makes me just plain ANGRY. I do have some history of claustrophobia,
You've just identified one potential CPAP adjustment problem: Claustrophobia.

A lot of people do have some serious problems with claustrophobia caused by the mask when they start CPAP. Some of them are even surprised that claustrophobia is an issue. Some aren't.

Claustrophobia can be dealt with. Sometimes its as simple as trying to remind yourself that this alien who has taken up residence in your bedroom and who is insisting on sleeping on your face is actually trying to make it easier for you to breathe. Sometimes people can train themselves to not hate the mask so much by using it in the daytime while watching tv or reading. Sometimes the issue is so serious that it requires some professional help, either from a counselor or psychologist who is good at directing cognitive behavior therapy or through the judicious use of anti-anxiety medication.

Only you know how serious the claustrophobia issue is for you.

The anger you feel is an issue, but it's not technically a CPAP-adjustment issue: You're angry because using the CPAP has turned out to be a whole lot harder than you expected it to be. And the CPAP is messing with your sleep in ways that you never anticipated.

It's also worth noting that both the claustrophobia and anger issues may resolve as you manage to find ways of proactively dealing with some of the other CPAP-adjustment issues that you identify in your rant.

Quote:I probably have some issues with authority and the feeling of having to push against air to exhale makes me feel like I'm getting rolled by a wave and about to drown (in fact that is the dream my head made up as I awoke gasping and pulling the mask off).
OK: You've just identified your second CPAP hurdle: Exhaling against the pressure makes you feel like you're going to drown (in air).

Do you know if EPR is set to ON? And if it is, what is it set to? For many people, the "correct" EPR setting goes a long way in relieving the feeling of drowning in air because you just can't fully exhale against the pressure. But "correct" EPR varies from person to person. Some people find that EPR = 1 works best. Others want EPR = 3. And others prefer the middle setting of EPR = 2. So play with the EPR setting.

If EPR = 3 does not provide enough pressure relief for you to exhale comfortably, then its time to report the problem to the sleep doc's office in firm language to get them to understand that this is a problem that is serious enough for you to want to just toss the whole thing into the closet. If you can talk to the sleep doc (or his nurse or PA) in a fashion where you think s/he is actually listening to you, you might want to bring up the idea of whether using a bilevel machine (the Resmed AirCurve or the PR DreamStation BiPAP) might help. On a bilevel, the amount of pressure relief on exhalation can be set higher than 3cm, which is the maximum amount of relief that EPR can provide you on the current AirSense.

Quote:I generally sleep with a window open at the head of my bed even when the temps drop into single digits. I dread stuffy, recycled air. I take trains when I can (even over night) so I don't have to deal with panic inducing airplane cabin air.
So you've also identified CPAP Issue #3: The air coming through the mask probably seems stuffy and stale to you. Particularly if your equipment is still new enough to smell like plastic.

Some things to try that might help:
  • If you are using a heated hose, turn the temperature DOWN or turn the heated hose completely off. Consider replacing the heated hose with a standard, unheated hose. Also you might want to compare a 22mm unheated hose to the 19mm unheated Slimline hose. Some people find the airflow through the hose sizes to feel quite different; which feels "best" depends on the person who is using the CPAP.
  • If you are using a heated humidifier, turn the humidifier setting way down or turn it off entirely. Breathing warm, humid air is going to maximize the feeling that the air seems stuffy and stale.
  • If you like things like aroma therapy, you can place a cotton ball with your favorite aroma therapy fragrance right by the air intake in the back of the machine. The fragrance will be pulled in by the blower unit and that might make the air in the hose not seem so stale and stuffy.


Quote:Then, back when I was in grad school and going through a divorce and lupus and .... well I learned to manage stress through breathing exercises... measuring the inhale and the exhale, deep and long into sleep.
And you've now identified CPAP-adustment Issue #4: The machine is changing or not allowing you to (comfortably) use some of your favorite techniques for dealing with stress.

This one was a big issue for me when I was a newbie too. I never have been able to do deep yoga-breathing with the mask on my face. And it was (and is) a major way I cope with stress.

This one can be tough to conquer. Some people do eventually learn to "breathe deeply with the machine." I never could---there's an almost miniscule rise in pressure towards the end of the exhalation when you are using EPR, and that always made it feel like the machine was rushing me to inhale before I was ready to. The real fix for that problem for me was a change to a PR System One BiPAP with Flex turned OFF. On my BiPAP, the pressure stays at EPAP until I actually do start to inhale. And that does make it easier for me to get to sleep.

You might try doing the deep breathing before putting the mask on. And then slipping the mask on once you start to feel sleepy. That works for some people, but I have to admit that it never worked that well for me.

You might also need to work on trying to shorten your average latency to sleep. (That too can be very tough to do.) In the end, this was just as important, and maybe more important, in my own adjustment to CPAP. After doing some serious CBT-I work that involved some intentional sleep deprivation, I was able to shorten my latency to sleep from 40-50 minutes down to 5-10 minutes. Lying in bed awake for 40 minutes or more with the machine blowing air down my throat was a huge stressor for me and a significant source of my own anger at CPAP. Lying in bed for 5-10 minutes while getting to sleep is not an issue.


Quote:So when the least invasive device (nasal pillows) goes on for the few hours I've been able to manage, I need to fight all my usual sleep time habits. I'm suddenly dreading going to bed at night. If I get myself tired enough, I can get to sleep during the 45 minute ramp time
You've now identified CPAP-Adjustment Issue #5: CPAP-induced insomnia and/or dread of bedtime.

Been there, done that, and have way too many t-shirts to prove it.

This one is a very tough nut to crack. But it's probably the lynchpin issue for you to deal with. In the long run, you may need both some CBT for insomnia and the willingness to consider taking prescription sleeping medication to deal with the CPAP-induced insomnia and dread-of-bedtime problems you are dealing with.

Let me tell you about my own sad story with this issue: My CPAP-induced insomnia was starting to rage out of control by Night 3 of my CPAP therapy. I woke up from a dream that night that was truly bizarre and terrifying: I'd dreamed I was an intelligent goose who realized that I was being "fattened up" for fois gras by being forced to breathe in more air than my body could ever manage to hold. I knew that I'd be served up on little hors-d'ourve crackers just as soon as I popped from all that excess air.

In my case I was luck that my hubby could see not only how hard I was struggling at night, but also how precipitous the decrease in my daytime function was since starting CPAP. He insisted on calling the sleep doc's office (more than once) until he got my follow-up appointment moved to the next day. He went with me on numerous follow-up appointments when I was not able to effectively describe what was happening to me both at night and during the daytime. The PA suggested that I needed to pay a lot more attention to sleep hygiene and she also offered to write a script for Ambien, which I refused to take. In retrospect I probably should not have been so hard nosed about the Ambien. I did as much as I could to clean up the sleep hygiene on my own, but the CPAP insomina continued to grow and I continued to have problems with rather severe aerophagia. That's what lead to the change of machine from the Resmed S9 AutoSet I started with to the PR System One BiPAP Auto I currently use. But the change of machine was not enough to bring the insomnia under control.

At yet another "semi-emergency" meeting with the sleep doc's PA, I was finally able to admit that I needed some serious help with the insomnia. She listened to my desire to not take prescription sleeping pills and she was willing to direct cognitive behavior therapy for insomnia (CBT-I), but she also insisted that I be willing to take Ambien on the night after a "disaster night" to prevent having two "disaster nights" in a row. (I got to define "disaster" however I wanted to.) She also had me on a restricted time in bed schedule: My official bedtime was 1:30AM or when I first got sleepy after 1:30AM. My official wake up time was 7:30AM regardless of how little sleep I got each night. And if I thought I'd been lying in bed for 20 minutes or more without getting to sleep, I had to get back out of bed and go into a different room and wait until I was sleepy enough to try again. I also had to keep a sleep log documenting how long I thought it took me to get to sleep and how many time I thought I woke up each night.

And the interesting thing was, this rather difficult sleep restricted schedule worked pretty good in terms of reducing my latency to sleep and consolidating my sleep cycles. By the end of 3 or 4 months of CBT-I, I was consistently falling asleep within 10 minutes or so of going to bed and I was only waking up 3 or 4 times each night instead of 9-10 times. And the wakes were usually quite short--as in 5 or 10 minutes instead of 20 minutes.

So the moral of my story: My advice to others who are dealing with serious CPAP-insomnia issues or CPAP "dread of bedtime" issues is to report the problem. Ask about CBT-I. And be open minded if the doc, nurse, or PA suggests the short term use of sleeping pills.

Quote:(Thanks to reading here I figured out what that was about, since the guy who delivered it just set it to auto and left), but unfortunately that means I often screw up and fall asleep on the couch instead of in bed with my machine.
Don't beat yourself up here: When you wake up on the couch, make yourself get up and go to bed properly.

Also try to pay very close attention to how sleepy you feel: As soon as you start feeling like you can't keep your eyes open, go to bed and mask up.

It helps to have put everything together several hours before you go to bed. In other words, fill up the humidifier tank and attach the mask and hose to the machine well before bedtime. That way you only have to pull the mask on and hit the start button once you do climb into bed.

Quote:I put in calls to the "CPAP clinic" three weeks in a row looking for help (the doc had told me to call them) and was ignored.
Call the doc's office and report that the CPAP clinic is ignoring your calls for help. Call the CPAP clinic and the sleep doc's office every day if you have to.

Quote:Meanwhile the DME was calling warning me about compliance. When the clinic lady finally called after my Endocrinologist sent a note to her, all she said was that she couldn't help me if I wasn't compliant. I told her the doc had told me to call if I was having problems being compliant.
Your DME and sleep doc are playing "hot potato" and you're unfortunately the hot potato.

That's why you need to continue calling both outfits. The CPAP clinic and the DME cannot prescribe sleeping medication if that's what you need to get over the initial hump. Nor can they provide you with CBT-I. That's the sleep doc's responsibility. You could also try calling your primary care doctor and ask him/her to refer you to someone who can do CBT-I or consider prescribing you with some sleeping pills if need be.

Here's the thing: The doc is the one who is ultimately responsible for the quality of your treatment. The DME/CPAP clinic can only make adjustments to the therapy settings if the doc orders it. But the DME/CPAP Clinic are the ones who should be working with you on things like finding a suitable mask and determining whether your leaks are under control. But if you're not adjusting to therapy to the point where you are not compliant, the sleep doc has some responsibility: Is the problem something that might be addressed with a change of machine? Only the sleep doc can make that determination. Is the problem something that some sleeping pills or CBT-I might help? Only the sleep doc can make that determination.

Quote:I pointed out that if someone had helped me by explaining and changing the Ramp setting sooner, I would probably be closer to being compliant by now so maybe they can help me in some other ways. She finally, grudgingly made an appointment for me (will be on Wednesday). Since then, I've discovered the EPR, but since that isn't part of the patient settings I want to let them do that. I suppose that since it is set at 2 it still can be improved slightly.
Pardon my saying it, but you seem to have a particularly incompetent DME or CPAP clinic.

Ramp should have been explained to you when you got the machine. EPR is a patient comfort feature and you should not have been locked out of it. As soon as you reported "I can't exhale comfortably" both the DME and the sleep doc's office should have jumped up to say, "What's the EPR set to?"

And yes, EPR can be increased to 3 and that might help you feel more comfortable exhaling. But if it's not enough exhalation relief, then the sleep doc has the power to write a memo to the insurance company explaining that there is medical necessity for doing a bilevel titration study with the intent to switch you to bilevel to see if that makes it possible for you to become compliant with therapy for your OSA.

Quote:Anyway, the few times I've been able to get close to a compliant night (missed it by five lousy minutes!) sleepyhead is telling me that my AHI was a whopping 0.28 (and yes that decimal is in the right place). Which brings me to another thing I obsess about when trying to sleep with the dang thing: The only reason I was sent for the sleep study was that my pacemaker reported irregularities. However since that time it has been determined that that was all artifact. Yes, I've been struggling with daytime sleepiness, but we also discovered that my thyroid was coming up short and sleepiness has always been the first sign that the thyroid is slipping.
But what did the sleep study itself say about your OSA? What was your diagnostic AHI on the sleep study? If you don't have a copy of the diagnostic sleep study, you need to get one.


Quote:So, if you've been kind and sweet and patient enough to read this far, I need to get control of these anger issues and rebellion and ... well if I'm ever going to be compliant. I just haven't figured out what I need to punch to get it out of my system. -- rant tags off --
It may be that your anger issues are serious enough where you might want to get some counseling for them. Mine grew to the point where my anger over CPAP was taking over my life. Counseling helped a lot.

Good luck.

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05-16-2016 02:37 PM
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Post: #12
RE: Clueless Nube - Unidentified Apnea Events
Perhaps it is a thyroid issue . You may have just won the cpap lottery. You may not have OSA after all. Once your thyroid is properly regulated report back on daytime sleepiness.

Coffee
05-16-2016 10:05 PM
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plainhat Offline

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Post: #13
RE: Clueless Nube - Thanks so much and a few more ?
Wow! what a generous and kind response! Thank you for taking the time and giving of yourself!

(05-16-2016 02:37 PM)robysue Wrote:  So you've got the proper credentials for being able to say: I don't usually rant. Smile
Naw, not really. I certainly don't have any excuse for feeling sorry for myself. I know that, but somehow then I start kicking myself for kicking myself.

(05-16-2016 02:37 PM)robysue Wrote:  You've just identified one potential CPAP adjustment problem: Claustrophobia.
<!--snipped stuff for brevity -->

Claustrophobia can be dealt with. Sometimes its as simple as trying to remind yourself that this alien who has taken up residence in your bedroom and who is insisting on sleeping on your face is actually trying to make it easier for you to breathe.
And there you defined another issue, Denial! It is very very hard for me to convince myself that it is helping me breathe when I never ever had any reason to believe that I was having problems breathing in the first place. The very first time I ever awoke with heart and head pounding, gasping for air was because of the CPAP! Yeah yeah I know. They say that is because I've not slept deeply enough to have it affect me that way. Brain may kinda sorta understand that, but the heart and the angry me just wants go sleep the way I used to!

(05-16-2016 02:37 PM)robysue Wrote:  You're angry because using the CPAP has turned out to be a whole lot harder than you expected it to be. And the CPAP is messing with your sleep in ways that you never anticipated.
Actually, I dreaded having to have one. Watched friends with them and always counted it as one of the small lucky things in life that I had at least escaped that problem. But yes, I never expected it to make sleeping worse!

(05-16-2016 02:37 PM)robysue Wrote:  OK: You've just identified your second CPAP hurdle: Exhaling against the pressure makes you feel like you're going to drown (in air).

This is what I tried to talk to the clinic person about over the phone. She kept insisting that I probably needed a higher pressure (I didn't know about the comfort settings then) or a mask instead of the nasal thing. At least I know what to ask about now when I see her on Wednesday. I will ask that the EPR be set to 3!
(05-16-2016 02:37 PM)robysue Wrote:  If EPR = 3 does not provide enough pressure relief for you to exhale comfortably, then its time to report the problem to the sleep doc's office in firm language to get them to understand that this is a problem that is serious enough for you to want to just toss the whole thing into the closet. If you can talk to the sleep doc (or his nurse or PA) in a fashion where you think s/he is actually listening to you, you might want to bring up the idea of whether using a bilevel machine (the Resmed AirCurve or the PR DreamStation BiPAP) might help.
I think if it comes to that, I may reach out to my former boss's partner who is a pulmonologist (though not a sleep doctor). He at least might offer some guidance in the way of a new specialist.

(05-16-2016 02:37 PM)robysue Wrote:  Particularly if your equipment is still new enough to smell like plastic.
Heh, I was annoyed this morning because my cat even smells like the plastic. Another small loss. She sleeps next to my head and I sometimes find comfort giving her a snuggle when I wake up in the night. it took quite some convincing her that I wasn't hissing at her with the CPAP Wink
(05-16-2016 02:37 PM)robysue Wrote:  Some things to try that might help:
If you are using a heated hose, turn the temperature DOWN or turn the heated hose completely off.

YES! I started to try that last night, but unfortunately I couldn't even try the CPAP last night because I'm suddenly having issues with GERD that has been otherwise under control for years. I WILL try it tonight.
(05-16-2016 02:37 PM)robysue Wrote:  If you are using a heated humidifier, turn the humidifier setting way down or turn it off entirely. Breathing warm, humid air is going to maximize the feeling that the air seems stuffy and stale.
Yes, the other thing I mean to try. I wasn't sure if I should muck with that setting, but I'll give it a shot tonight.
(05-16-2016 02:37 PM)robysue Wrote:  If you like things like aroma therapy, you can place a cotton ball with your favorite aroma therapy fragrance right by the air intake in the back of the machine. The fragrance will be pulled in by the blower unit and that might make the air in the hose not seem so stale and stuffy.
Better than that, I grow lavender. I'll cut some tomorrow :-}
(05-16-2016 02:37 PM)robysue Wrote:  Issue #4: The machine is changing or not allowing you to (comfortably) use some of your favorite techniques for dealing with stress.
You might try doing the deep breathing before putting the mask on. And then slipping the mask on once you start to feel sleepy. That works for some people, but I have to admit that it never worked that well for me.

What I have done occasionally is give myself license to inhale deeply through my nose then exhale deeply out my mouth a few times. The cat really does think i'm hissing at her, but it sometimes is enough to let me relax a bit.
(05-16-2016 02:37 PM)robysue Wrote:  You might also need to work on trying to shorten your average latency to sleep. (That too can be very tough to do.) In the end, this was just as important, and maybe more important, in my own adjustment to CPAP.

I'm way ahead of you on this one. I think it is because of the lupus pain, but I just simply can't sit in bed for any length of time before or after sleep. Stuff just starts to hurt and I'll never sleep. However, the flip side is that I sometimes overshoot that and end up asleep at my keyboard or on the couch.

(05-16-2016 02:37 PM)robysue Wrote:  You've now identified CPAP-Adjustment Issue #5: CPAP-induced insomnia and/or dread of bedtime.

Been there, done that, and have way too many t-shirts to prove it.

This one is a very tough nut to crack. But it's probably the lynchpin issue for you to deal with. In the long run, you may need both some CBT for insomnia and the willingness to consider taking prescription sleeping medication to deal with the CPAP-induced insomnia and dread-of-bedtime problems you are dealing with.
Oh geeez! yanno just five years ago I had gotten myself to the point where I was managing with just a bit of ibuprofen and that was all the medication I needed. In 5 short years I'm back to shake rattle and rolling with all the crap I put in my body. But..yeah... ok.. I get it. Not yet, but if it comes to that. I hope it doesn't.

L
(05-16-2016 02:37 PM)robysue Wrote:  I woke up from a dream that night that was truly bizarre and terrifying: I'd dreamed I was an intelligent goose who realized that I was being "fattened up" for fois gras by being forced to breathe in more air than my body could ever manage to hold. I knew that I'd be served up on little hors-d'ourve crackers just as soon as I popped from all that excess air.

Well you get mega points for originality anyway!!!
(05-16-2016 02:37 PM)robysue Wrote:  In my case I was luck that my hubby could see not only how hard I was struggling at night, but also how precipitous the decrease in my daytime function was since starting CPAP. He insisted on calling the sleep doc's office (more than once) until he got my follow-up appointment moved to the next day.
I'm so glad you had such a great support there! Doubt my hubby would have bothered. Hmmmm do you think I could train my cat to do that for me? Laugh-a-lot
(05-16-2016 02:37 PM)robysue Wrote:  She also had me on a restricted time in bed schedule: My official bedtime was 1:30AM or when I first got sleepy after 1:30AM. My official wake up time was 7:30AM regardless of how little sleep I got each night. And if I thought I'd been lying in bed for 20 minutes or more without getting to sleep, I had to get back out of bed and go into a different room and wait until I was sleepy enough to try again.

Yup, this is my usual routine (except for when I fall out before I get to bed :-) )

(05-16-2016 02:37 PM)robysue Wrote:  Don't beat yourself up here: When you wake up on the couch, make yourself get up and go to bed properly.
That I do, the problem I face then is that I'm not as sleepy anymore. I've taken the edge off.
(05-16-2016 02:37 PM)robysue Wrote:  Also try to pay very close attention to how sleepy you feel: As soon as you start feeling like you can't keep your eyes open, go to bed and mask up.

Yeah well, this started when my thyroid first crashed (no circulating t4) and unfortunately, before we caught the problem and fixed it, I "learned" how to fall asleep with absolutely no warning at all... like at traffic lights. It isn't that bad anymore, but I haven't regained that warning mechanism that tells me I'm falling asleep.
(05-16-2016 02:37 PM)robysue Wrote:  The CPAP clinic and the DME cannot prescribe sleeping medication if that's what you need to get over the initial hump. Nor can they provide you with CBT-I. That's the sleep doc's responsibility. You could also try calling your primary care doctor and ask him/her to refer you to someone who can do CBT-I or consider prescribing you with some sleeping pills if need be.
I'll be seeing the doc in about two weeks for a followup. If stuff isn't better by then, I'll try to work it out with him.
(05-16-2016 02:37 PM)robysue Wrote:  But what did the sleep study itself say about your OSA? What was your diagnostic AHI on the sleep study? If you don't have a copy of the diagnostic sleep study, you need to get one.
I don't have a copy. I think he said that in a 6 hour period there were 17 "events," but didn't say what kind they were. I could have misheard him too, since 17 would be rather low. I guess they didn't instill much confidence in me when the PA took my neck measurement over my hair and my collar. It felt as though they were just making sure the insurance company heard what they wanted them to hear. I will ask for the records.

(05-16-2016 02:37 PM)robysue Wrote:  It may be that your anger issues are serious enough where you might want to get some counseling for them.

Well I'm hoping that the ever loving geek/nerd in me will take over and that looking at the data and maybe actually seeing something change will fascinate me enough to distract me from the fact that I want to hurl the ever loving thing out the window Big Grin The other thing I'm hoping for is that my blood glucose numbers level out a bit. The endocrinologist is hoping that the apnea is causing my numbers to go up at night. If I see that change, I might feel as though the whole thing is worth it.

A few more questions:
First, while you were adjusting, how did you manage on so little sleep? I have to drive 30 miles each way to work and find programming a bit difficult when I'm nodding off at my keyboard during the day :-P

Second, What about other issues that wreak havoc with sleep? I had a sleep study done back in the 90's as my neurologist pursued various issues I have always had with severe muscle cramps and fasciculations some of which would adversely affect my sleep (but also happen during the day). The only thing that came up then was that one of the medications I was on to help it was actually affecting my sleep. Otherwise, most of it was blamed on the lupus. The night of my recent sleep study these things were especially bad. This isn't just leg cramps, but arms and hands and ribs. I asked the sleep doctor about it he just blew all that off. I guess that if the sleep doc is a pulmonologist, the only thing that will concern him is the breathing issue. Does anyone else on these boards deal with multiple sleep issues?


Again, thanks for all the attention! I'm gonna figure this out one way or another.
05-16-2016 10:54 PM
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plainhat Offline

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Post: #14
RE: Clueless Nube - Unidentified Apnea Events
(05-16-2016 10:05 PM)sonicboom Wrote:  Perhaps it is a thyroid issue . You may have just won the cpap lottery. You may not have OSA after all. Once your thyroid is properly regulated report back on daytime sleepiness.

Ahh don't tempt me to hoping for that! Yanno, when the doc first prescribed the thing I asked him if I dropped some more weight if that would help me get rid of it. (That line on the Rx about LIFETIME use just made me wild) He said, no way, not ever that I just have too many risk factors. But but but... yeah, I could never be so lucky :-)
05-16-2016 11:00 PM
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Post: #15
RE: Clueless Nube - Thanks so much and a few more ?
(05-16-2016 10:54 PM)plainhat Wrote:  
(05-16-2016 02:37 PM)robysue Wrote:  You've just identified one potential CPAP adjustment problem: Claustrophobia.
<!--snipped stuff for brevity -->

Claustrophobia can be dealt with. Sometimes its as simple as trying to remind yourself that this alien who has taken up residence in your bedroom and who is insisting on sleeping on your face is actually trying to make it easier for you to breathe.
And there you defined another issue, Denial! It is very very hard for me to convince myself that it is helping me breathe when I never ever had any reason to believe that I was having problems breathing in the first place. The very first time I ever awoke with heart and head pounding, gasping for air was because of the CPAP! Yeah yeah I know. They say that is because I've not slept deeply enough to have it affect me that way. Brain may kinda sorta understand that, but the heart and the angry me just wants go sleep the way I used to!
Denial is a power beast. Get the full results of your sleep study. And make sure you ask for the all the summary graphs. The data from the sleep study may help you get over your denial about the OSA.

And brains can be stubborn. A lot of newbie adjustment problems stem from the unconscious part of the brain not wanting to accept this alien beast on the face as a friend instead of a foe. It does get better with time and perseverance.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  OK: You've just identified your second CPAP hurdle: Exhaling against the pressure makes you feel like you're going to drown (in air).

This is what I tried to talk to the clinic person about over the phone. She kept insisting that I probably needed a higher pressure (I didn't know about the comfort settings then) or a mask instead of the nasal thing. At least I know what to ask about now when I see her on Wednesday. I will ask that the EPR be set to 3!
There are two common problems that newbies have that are quite different, but newbies wind up describing them in the same way: I feel like I'm suffocating or I just can't seem to breathe with the mask on.

For some people (like you and me) the problem is too much air is coming through the mask for them to comfortably exhale against the pressure.

For other people the problem is not enough air is coming through the mask for them to comfortably inhale deeply.

As you can imagine, the fix for the two problems is quite different: It the problem is too much air, EPR is the first thing to try. If the problem is too little air, increasing the pressure is the first thing to try. Chances are the person you were talking to as dealt with far more newbies who can't comfortably inhale rather than ones who can't comfortably exhale.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  Particularly if your equipment is still new enough to smell like plastic.
Heh, I was annoyed this morning because my cat even smells like the plastic. Another small loss. She sleeps next to my head and I sometimes find comfort giving her a snuggle when I wake up in the night. it took quite some convincing her that I wasn't hissing at her with the CPAP Wink
My cat got banned from the bedroom when he made the mistake of turning my machine off one too many times.

Quote:
(05-16-2016 02:37 PM)robysue Wrote:  Some things to try that might help:
If you are using a heated hose, turn the temperature DOWN or turn the heated hose completely off.

YES! I started to try that last night, but unfortunately I couldn't even try the CPAP last night because I'm suddenly having issues with GERD that has been otherwise under control for years. I WILL try it tonight.
Two notes about the GERD stuff:

First a positive one: Many CPAPers with GERD issues report that their GERD problems get better once they've got their CPAP therapy optimized and they're sleeping well with the machine. The typical gasping to open the airway at the end of an apnea can pull the acid from the stomach into the esophagus. Prevent the apneas with CPAP and one source for the acid reflux goes away.

And now a negative note: Many CPAPers with GERD issues who have trouble exhaling against the pressure also wind up having some problems with aerophagia as a CPAP-side effect. Aerophagia is when you swallow too much air during the night and it gets trapped in your stomach. It can be painful. The usual things that are suggested for dealing with aerophagia start with doing all the standard GERD self-help tips.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  If you are using a heated humidifier, turn the humidifier setting way down or turn it off entirely. Breathing warm, humid air is going to maximize the feeling that the air seems stuffy and stale.
Yes, the other thing I mean to try. I wasn't sure if I should muck with that setting, but I'll give it a shot tonight.
The humidifier is there for your comfort. You can and should play with the humidifier settings all you want. You may in fact find that you prefer to turn it off all together, and that's ok.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  Issue #4: The machine is changing or not allowing you to (comfortably) use some of your favorite techniques for dealing with stress.
You might try doing the deep breathing before putting the mask on. And then slipping the mask on once you start to feel sleepy. That works for some people, but I have to admit that it never worked that well for me.

What I have done occasionally is give myself license to inhale deeply through my nose then exhale deeply out my mouth a few times. The cat really does think i'm hissing at her, but it sometimes is enough to let me relax a bit.
If you can do the inhale through the nose and exhale through the mouth routine without discomfort, use it as much as you want to. The cat will figure it out eventually.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  You might also need to work on trying to shorten your average latency to sleep. (That too can be very tough to do.) In the end, this was just as important, and maybe more important, in my own adjustment to CPAP.

I'm way ahead of you on this one. I think it is because of the lupus pain, but I just simply can't sit in bed for any length of time before or after sleep. Stuff just starts to hurt and I'll never sleep. However, the flip side is that I sometimes overshoot that and end up asleep at my keyboard or on the couch.
Good luck with dealing with the pain issues.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  You've now identified CPAP-Adjustment Issue #5: CPAP-induced insomnia and/or dread of bedtime.

Been there, done that, and have way too many t-shirts to prove it.

This one is a very tough nut to crack. But it's probably the lynchpin issue for you to deal with. In the long run, you may need both some CBT for insomnia and the willingness to consider taking prescription sleeping medication to deal with the CPAP-induced insomnia and dread-of-bedtime problems you are dealing with.
Oh geeez! yanno just five years ago I had gotten myself to the point where I was managing with just a bit of ibuprofen and that was all the medication I needed. In 5 short years I'm back to shake rattle and rolling with all the crap I put in my body. But..yeah... ok.. I get it. Not yet, but if it comes to that. I hope it doesn't.
Start by being proactive with the potential insominia monster. Take a good hard look at all your sleep hygiene behaviors and start paying attention to the ones that work the best for you.

Given the lupus pain, it seems that you probably won't be lying in bed for hours awake while fighting for sleep and getting angry at the CPAP. And that's a good start.

But do start working on learning how to tell that your body is getting sleepy enough to fall asleep relatively quickly after masking up.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  She also had me on a restricted time in bed schedule: My official bedtime was 1:30AM or when I first got sleepy after 1:30AM. My official wake up time was 7:30AM regardless of how little sleep I got each night. And if I thought I'd been lying in bed for 20 minutes or more without getting to sleep, I had to get back out of bed and go into a different room and wait until I was sleepy enough to try again.

Yup, this is my usual routine (except for when I fall out before I get to bed :-) )
If you fall asleep before you go to bed, you're missing some subtle clues that your body is finally sleepy enough to go to sleep regardless of whether there's an alien on your face. With time and paying close attention to your body, you should start to notice those subtle signs on a more regular basis.

Being able to tell when you are finally on the verge of falling asleep is a skill--but you knew that already. Just try to pay more attention to when the eyes get so droopy that it's hard to keep them open.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  Don't beat yourself up here: When you wake up on the couch, make yourself get up and go to bed properly.
That I do, the problem I face then is that I'm not as sleepy anymore. I've taken the edge off.
How long do you sleep on the couch before waking up? And when you say you've taken the edge off, do you mean you're up for the day?


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  Also try to pay very close attention to how sleepy you feel: As soon as you start feeling like you can't keep your eyes open, go to bed and mask up.

Yeah well, this started when my thyroid first crashed (no circulating t4) and unfortunately, before we caught the problem and fixed it, I "learned" how to fall asleep with absolutely no warning at all... like at traffic lights. It isn't that bad anymore, but I haven't regained that warning mechanism that tells me I'm falling asleep.
Falling asleep without any warning at all ... like at traffic lights is actually a very common symptom of untreated OSA.

So yeah, some of the cause of that problem was the thyroid. But if it still happens, some of the cause might be the OSA. Once you are sleeping well with the CPAP the tendency to fall asleep without any warning during the daytime may disappear completely.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  The CPAP clinic and the DME cannot prescribe sleeping medication if that's what you need to get over the initial hump. Nor can they provide you with CBT-I. That's the sleep doc's responsibility. You could also try calling your primary care doctor and ask him/her to refer you to someone who can do CBT-I or consider prescribing you with some sleeping pills if need be.
I'll be seeing the doc in about two weeks for a followup. If stuff isn't better by then, I'll try to work it out with him.
I'm glad that you've got a follow up scheduled in two weeks. However if it gets to the point where you feel like you just can't sleep at all once you put the mask on, don't wait that long.


Quote:
(05-16-2016 02:37 PM)robysue Wrote:  But what did the sleep study itself say about your OSA? What was your diagnostic AHI on the sleep study? If you don't have a copy of the diagnostic sleep study, you need to get one.
I don't have a copy. I think he said that in a 6 hour period there were 17 "events," but didn't say what kind they were. I could have misheard him too, since 17 would be rather low.
Is that 17 events per hour? (I.e. your untreated AHI = 17)

Or is that 17 events during the whole sleep study?

Do ask for a copy of the study's summary report with the summary data and the summary graphs. There's a huge amount of data in that report and it will be useful to you as you try to understand why you're being told that you need CPAP.


Quote:I guess they didn't instill much confidence in me when the PA took my neck measurement over my hair and my collar. It felt as though they were just making sure the insurance company heard what they wanted them to hear. I will ask for the records.
I will say that taking the neck measurement that way is a good way to destroy the patient's confidence.



Quote:Well I'm hoping that the ever loving geek/nerd in me will take over and that looking at the data and maybe actually seeing something change will fascinate me enough to distract me from the fact that I want to hurl the ever loving thing out the window Big Grin
Get SleepyHead. You'll love all the data that your machine records about your sleep breathing each night.


Quote:The other thing I'm hoping for is that my blood glucose numbers level out a bit. The endocrinologist is hoping that the apnea is causing my numbers to go up at night. If I see that change, I might feel as though the whole thing is worth it.
There are a lot of people of forums like this who do report that once the OSA is controled, the blood glucose numbers become easier to control.


Quote:A few more questions:
First, while you were adjusting, how did you manage on so little sleep? I have to drive 30 miles each way to work and find programming a bit difficult when I'm nodding off at my keyboard during the day :-P
My hubby. He took to doing a lot of the driving. I'm a college professor so I also was able to request a later teaching schedule. Still it was hard.

And the worst of the sleep deprivation stage took place during my winter break. By the start of the semester, I was actually beginning to sleep for about 5 hours most of the time and waking up feeling somewhat rested.

I'll also add this bit of information: The 6-hour time in bed time period was based on the fact that prior to starting the CBT-I, I was getting about 4 to 4.5 hours of sleep during about a 7 or 8 hour "time in bed" period. The PA used the fact that I was only sleeping 4 to 4.5 hours anyway to determine the 6 hour time in bed period. The idea was to prevent me from spending long periods in bed tossing and turning both at the beginning of the night and during the middle of the night after waking up. As I recall she said something along the lines of "The goal is to consolidate your sleep cycles: We're giving your body enough time to get the sleep it's already getting, but we're forcing it to not waste time lying in bed awake."

The long term goal was to slowly increase the time in bed period once I was soundly sleeping at least 5-5.5 hours every night during the 6 hour time in bed period.

I now typically get about 6 or 6.5 hours of sleep in a 7 hour time in bed period, and that seems to be enough for me to function most of the time. I've learned the hard way that if I give myself an 8 hour time in bed period, but I only get 6.5 hours of sleep anyway, I feel worse than if I get 6 hours of sleep in a 7 hour time in bed period.


Quote:Second, What about other issues that wreak havoc with sleep?
You listed a bunch of them. Some of the other issues are actual medical problems that can require treatment. Others are more life style issues that can be controlled if they're adversely affecting the sleep. Others are more life-stage issues that we have to get through one way or another. A short list includes:
  • Muscle cramps. Restless leg syndrome can occur both during the day and at night. RLS can ruin some people's sleep. My father takes gabepentin to keep his restless legs under control so that he can sleep. RLS is usually diagnosed through a careful patient history.
  • Periodic limb movements. PLMD is not quite the same as RLS since PLMD is a very specific kind of muscle movement and only occurs at night. But PLMD can ruin sleep. PLMD is usually diagnosed through a PSG. Sometimes OSA can mask PLMD, and the PLMD becomes clinically important after the CPAP therapy is optimized. There's a poster on another forum who has dealt at length with this issue and she's very up to date on her knowledge of the kinds of treatments that can be used for PLM.
  • Circadian rhythm problems. Delayed sleep phase is when you don't get sleepy enough early enough in the night to function during the daytime. Advanced or early sleep phase is when you get sleepy too early and often as consequence wake up too early. Both are not real issues unless they interfere with your daily life. Circadian rhythm problems are usually diagnosed through a detailed patient history and perhaps by asking the person to keep a sleep journal for a few weeks.
  • Shift work syndrome. If you are constantly switching back and forth between working days and nights, that can play havoc with your sleep. Many people who only work nights also have problems getting high quality sleep if they're not working a schedule that fits their circadian rhythm.
  • Stress.
  • Medications. Many medications can trigger insomnia. Many can cause daytime drowsiness. Many can do both
  • Caffeine, alcohol, and other recreational drugs. They can all adversely affect sleep, although the affect it in different ways.
  • Narcolepsy. It's not common, but it does play havoc with the overall quality of the sleep.
  • Sleep terrors, nightmares, and other REM related disorders. Again, they're not common, but for the folks who suffer from them, the affects can be profound. Some REM related disorders will be picked up on a routine PSG.
  • Bruxism or nighttime teeth grinding or clenching and other TMJ problems. While these can also be daytime issues, they can occur primarily at night and when they do, they can also make it more difficult to get a good night's sleep. Night guards are the usual way of treating them.
  • Depression and other mood disorders. Lack of high quality sleep can be a major symptom of depression and several other mood disorders. If depression is the only cause for the bad sleep, treating the depression with antidepressants often improves the sleep. But "bad sleep" caused by other reasons can also lead to depression as well. So this one's a two-way street.
  • Other medical conditions. A large number of medical conditions can make it harder to get a really good night's sleep where you wake up feeling rested and refreshed. Some of them are pretty common: GERD and nasal allergies are things that a lot of people experience that can cause temporary sleep problems. But almost any condition that causes pain can interfere with getting high quality sleep---you have some experience with that with your lupus. Arthritis can also cause problems because of the pain. It's hard to get into a sound sleep if pain is keeping you awake.
  • Infants and small kids in the house. Yes, it sounds weird. But as any parent of an infant or toddler knows, when the kid is crying in the middle of the night, you're not getting a full night's sleep. Of course, this one is self-limiting: Eventually the kids get big enough to not cause regular night time interruptions to the sleep. And then hopefully the adults' sleep returns to normal.


Quote:I had a sleep study done back in the 90's as my neurologist pursued various issues I have always had with severe muscle cramps and fasciculations some of which would adversely affect my sleep (but also happen during the day). The only thing that came up then was that one of the medications I was on to help it was actually affecting my sleep.
Yep. Medicines can have some oddball effects on our sleep.


Quote:Otherwise, most of it was blamed on the lupus.
Not an unreasonable hypothesis since lupus involves pain in multiple locations.


Quote:The night of my recent sleep study these things were especially bad. This isn't just leg cramps, but arms and hands and ribs.
It would be interesting to see if there was any note about PLMD in the data from the sleep study. However, if these sensations were when you were trying to get to sleep, that would point more to RLS, which does not have to be limited to the legs.


Quote:Does anyone else on these boards deal with multiple sleep issues?
I'm sure a lot of folks here do. On the other forum that I participate in, there are a lot of folks with multiple sleep issues.

My own list of sleep issues include: OSA, insomnia, delayed sleep phase, and serious nighttime TMJ issues. They're all controlled with the help of my sleep doctor and TMJ specialist and more hard work than I care to talk about on my part. Stress adds to the insomnia, the delayed sleep phase problems, and the TMJ quite a bit. It took a while to find migraine medication that could control my chronic migraines without aggravating the insomnia. I'm also sensitive enough to caffeine to require being "caffeine free" as much as I can. (I still miss unsweetened ice tea when dining out.)

Questions about SleepyHead?
See my Guide to SleepyHead
(This post was last modified: 05-17-2016 01:44 PM by robysue.)
05-17-2016 01:39 PM
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plainhat Offline

Members

Posts: 13
Joined: May 2016

Machine: ResMed AirSense 10 Autoset
Mask Type: Nasal pillows
Mask Make & Model: ResMed AirFit P10
Humidifier: integrated
CPAP Pressure: 5.00 - 20.00 cmH2O
CPAP Software: SleepyHead

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Sex: Female
Location: Philly Area

Post: #16
RE: Clueless Nube - Unidentified Apnea Events
Again thanks! Yep it was the migraine meds that mucked up my sleep back in the 90's.

Just a final note. I finally got the full 4 hours for compliance last night (I was awake for the last ten minutes or so). Sleepyhead again reported no events. :-) We shall see. So for the about 10 or so hours, the evil beast has only found one OSA event and two RERA events. I'll keep reading and learning!
05-17-2016 02:14 PM
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DeepBreathing Offline
Wiki Editor
Moderators

Posts: 2,295
Joined: Sep 2013

Machine: Resmed S9 VPAP Adapt
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: Resmed H5i
CPAP Pressure: EPAP: 9 - 15 PS: 3 - 10
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Perth, Western Australia

Post: #17
RE: Clueless Nube - Unidentified Apnea Events
Quote:So for the about 10 or so hours, the evil beast has only found one OSA event and two RERA events. I'll keep reading and learning!

I'd phrase that differently - the plastic alien has managed to prevent all except one OA and two RERAs. It shows the machine is doing what it's meant to do. Now the main thing is to focus on comfort and related issues as discussed by RobySue above.

DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
05-18-2016 12:02 AM
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