(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 -- 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.
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.