Crashing and Burning round 3 (or is it 4?)

[robysue]

In the one step backwards department.

After feeling like I had just about finally beaten the insomnia and starting to feel really good on some mornings (as in years younger, with no pain and enough energy to get through the whole day easily) and decent enough most days (as in no worse than I felt the summer before starting CPAP), I feel as though I'm starting to crash and burn yet again.

The last four nights have been bad ones in terms of both the insomnia and the apnea:

Bedtime has sliding back to between 2:00 and 3:30 for a while, and when I get to bed as early as 1:00, I seem to wake up frequently---as in no more than 90 to 120 minutes between wakes sometimes as little as 30 to 45 minutes. I'm now teaching again so except for the weekends, I must be up no later than 7:30 or 8:00 and 8:00 is cutting it way too close. Quality of sleep is way down: I wake up feeling both in the morning and during the night like I've been tossing and turning even when I can't pinpoint how long I've been tossing and turning.

Daytime irritability has skyrocketed: The last 5 days have started with crying jags in morning. I'm having a tough time concentrating on anything. I feel like a skittish rabbit waiting for a hawk to swoop out of the sky ...

Aerophagia has returned, although it's not bad (yet). And this in spite of the fact that my 90% pressure levels are running a bit lower than they were last spring: Usually my 90% EPAP is between 4 and 5; last spring it was consistently hitting 6.

I'm fighting annoying small leaks in the pillows (out the side of where it fits against my nostril) that don't show up in the leak lines (most of the time) because they are either waking me up or keeping me awake until I get them fixed. Pillows are not quite a month old, so the insurance won't yet pay for a new pair.

And the last 4 days my AHI > 2.0. (Yesterday it was above 3.0). This is one of the longest strings days with AHI that high that I've ever had since starting this crazy adventure.

*sigh*

[Janknitz]

It would be a poop if all this was set off by a set of lousy pillows! Any way you can pay oop or swap for a new set?? Apparently eBay may be a source.

[apneawho]

It would be a poop if all this was set off by a set of lousy pillows! Any way you can pay oop or swap for a new set?? Apparently eBay may be a source.

Robysue, I have not gone thru insurance for my pillows. I can get them so much cheaper on ebay. They are unused, in original packaging and I don't have the seller's name, but I purchased 4 for $20. She was selling them 3 for $21 and I offered $20 for 4. You can find all sizes.

[BlackSpinner]

I feel as though I'm starting to crash and burn yet again.

The last four nights have been bad ones in terms of both the insomnia and the apnea:

Allergies? Stress (new school year)? What has changed in the last 3 weeks in your environment?

[Madalot]

Oh, robysue. I follow your story (as you have followed mine) and was so happy for you when things seemed to be going well. I don't have any answers, but hope you can get a fast answer and get back on track before it gets any worse.

[ems]

I'm really sorry to hear this, Robysue. It scares me. I had this strange idea that once one is on the upswing, it just naturally stays that way. I suppose so much has to do with life situations, changes, stress, etc.

I have read all of your posts and you're quite an inspiration for others. I hope this turns around for you quickly!

[robysue]

It would be a poop if all this was set off by a set of lousy pillows! Any way you can pay oop or swap for a new set?? Apparently eBay may be a source.

The DME let me get my next set of pillows a few days early. So I've got new pillows to try for tonighrt. The DME will file the insurance at the appropriate time. Hubby has suggested just buying the pillows oop, but I just can't stand how inflated the prices for these things are. It's bad enough to think of the garbage I'm generating and the carbon foot print of CPAP with all the energy and petroleum stuff that's got to be involved in manufacturing these goodies. I pay for the damn fine filters oop at $7.00 a pop. And I need to change those weekly because the house is old and dusty and I'm just not capable of keeping the place spotless and the cat is a big shedder. I keep hoping that cpap.com will start stocking the correct, tabless filter for the system one. Yes, I know I can just cut the tab off or smoosh the filter in higgledy-piggledy. But when I've done that, I've had more problems with the filters coming out of the machine by accident.

@apneawho: I've done the ebay thing. Got some decent pillows and some that were not decent---in the sense that they lasted no more than two weeks. And one pair seemed to have the "inner cone inverts to easy" problem right from the start. Hubby told me to just get them from CPAPXpress and not bother with ebay anymore after I got too frustrated trying to keep on top of getting the pillows found and ordered on time about 9 months or so ago.

Allergies? Stress (new school year)? What has changed in the last 3 weeks in your environment?

Allergies? Rageweed is still blooming, but not as profusely as a month ago. No more sneezing than normal. And I'm still doing the neti pot, zyrtex, and flonase combo.

Stress? Always a constant in my life, and some of it good stress. In the middle of August our two AFS host daughters arrived. One's from Egypt and the other is from Pakistan. Opening your home to two foreign high school students obviously involves some stress, but it's a good kind of stress. The semester started off quite well for me. We're three weeks into the semester and things have been going pretty well. And until Friday (the beginning of the crash&burn feeling), during August and September, I had been noticing another unexpected positive difference as compared to my pre-cpap days that I'd hoped to be able to attribute to the BiPAP beginning to do its magic: I'd been handling stress in a more positive fashion and simply getting a lot less hyper when faced with day-to-day stress and pseudo-crises---those things that scream "CRISIS" but really aren't. Hubby had really been noticing this difference. But five straight days of crying jags in the morning have ended that streak (temporarily).

And then there's the TMJD oral appliance and the chew-free diet that came with it. I got it about a week before the bad string started. The first week with the appliance I had some of the best sleep that I've had in the past year---in terms of bedtime (in bed by 2:00 most nights), wake after sleep (0--2 wakes), AHI (less than 1.0), 90% pressure levels (about 7.7/4.3), and general overall subjective quality. But I also had to have the appliance adjusted since it was beginning to slip and rock the day before the current crash and burn feeling started. And that no-chew diet is beginning to get very old.

And I may be coming down with a cold. I've been coughing some. (I usually have no cough; allergies manifest themselves through congestion and sneezing.) And I've had some real problems with migraines and headaches this week.

@maddie: Your thoughts and concern always touch me. You've been an inspiration to me with all the problems that you are dealing with. It may sound crass, but reading about your very real problems always helps me put my own much more trivial ones in perspective. It's true I've had a very long and hard time dealing with this whole cpap stuff and the bad reaction to the migraine meds on top of it; but your story does remind me that I am still essentially healthy and that I should be grateful rather than resentful about my health. I hope that things go well with the new sleep neurologist and that a reasonable plan of action to help you feel better and function better on a day-to-day basis can be developed.

@ems: Two steps forward and one step back seems to be an ongoing theme in much of my xPAP story. I'm worried about the intensity of the crash&burn feelings, but after a decent Gifted Math class tonight and a welcome email from an administrative paper-pusher fixing a problem for my department at BSC this evening, my optimism is beginning to return.

It's past time for me to do the neti pot. So, I'm off to do that. Then put Kaa together with a new set of pillows. And then wiping the kitchen counters. And reading a bit of the Old Testament as my sleep aid before bed.

[cflame1]

And I may be coming down with a cold. I've been coughing some. (I usually have no cough; allergies manifest themselves through congestion and sneezing.) And I've had some real problems with migraines and headaches this week.

Well that could be the cause of your rise in AHI

[robysue]

Another not great night. But at least the new pillows did seal securely so there was no restlessness caused by those annoying small leaks each time I awoke. Still, I had three distinct wakes in a grand total of around 4 1/2 hours of "time in bed". And wakes So I guesstimate I got a bit more than 4 hours of sleep. And the AHI was 2.3 for the night. And woke with a tummy full of air, but at least the aerophagia is more of a nuisance and discomfort than outright pain this morning. And, unusual for me, there was six minute stretch of periodic breathing very shortly before I woke for the morning. I get a bit of periodic breathing flagged once or twice a month and don't think anything of it. The six minute stretch is the second longest I think I've ever seen in my daily data since I started using the PR System One. Overall, in my sleep log I described it as "not as bad as the last several nights." And I do feel marginally more rested even though I got a full hour (or more) less time in bed and probably close to an hour (or more) of less sleep time. I think that's because the wakes were short 5 minute ones instead of ones where I felt restless for a while fighting the slightly leaky old pillows. And so far no crying jag this morning.

And I may be coming down with a cold. I've been coughing some. (I usually have no cough; allergies manifest themselves through congestion and sneezing.) And I've had some real problems with migraines and headaches this week.

Well that could be the cause of your rise in AHI

OK, I'll try to chill out about the sudden increase in AHI from the <1.0-1.5 range to the 2.0--3.2 range until I quit the coughing. Here's hoping I manage to actually get over this cold instead of having it hang around for months like they sometimes do.

[DoriC]

Robysue, I know what you mean about bad stress/good stress but they both have the same bad affect on me. So I'll vote for stress and the cold. I hope things quiet down soon.

[BlackSpinner]

Robysue, I know what you mean about bad stress/good stress but they both have the same bad affect on me. So I'll vote for stress and the cold. I hope things quiet down soon.

Absolutely - a death and a wedding have the physical effect from stress. Ones mental outlook sees it differently.

[robysue]

Robysue, I know what you mean about bad stress/good stress but they both have the same bad affect on me. So I'll vote for stress and the cold. I hope things quiet down soon.

Absolutely - a death and a wedding have the physical effect from stress. Ones mental outlook sees it differently.

And that's exactly why I admit that hosting the AFS students is still stress, albeit good stress. I know from long experience that "good stress" affects my body in the same way that "bad stress" does, although my spirit and soul gain from the positive experience that's triggering the "good stress."

And I do struggle with managing stress and always have: From the Department of Irony---one of my biggest stressors throughout my adult life has been worrying about how badly I manage the stress in my life. The work with the CBT psychologist that I'm currently doing has focused on this issue among others. And some of the things he's suggested have made a positive difference. It's just that I'm still in the baby-step stage of making these suggestions a daily unconscious part of my life and it does take time. And I know that. The yoga class I'm currently taking is also helping, even though I keep stressing out about it being at 9:30 on a Saturday with a 20 minute drive to get there, which means I need to be functional by 9:00 AM, which is very, very early for me on a weekend these days. Now all I need to do is find a way to block out some time (without it cutting into sleep) to do some yoga more than once or twice a week.

[Tom W]

.....

[BlackSpinner]

From the Department of Irony---one of my biggest stressors throughout my adult life has been worrying about how badly I manage the stress in my life.

Yes been there. Still doing it at times. Especially at times I am more stressed - like I really NEED to worry about that at that time! Plus as soon as I get stressed I start nibbling at the other things which MIGHT also happen - next year or decade. And then I can't focus on doing things that help me release stress because I am too stressed.

[robysue]

This is the exact scenario that made me re-balance my life. When I could can only fit something into my schedule by eliminating something else I knew something was wrong. When the only thing left to cut out was sleep I knew I was too far in the 'wrong' direction. BTW yoga was what made me realize this.

Ah yes. Rebalancing my life. That is actually what I am currently struggling to do. And weekly yoga and the CBT guy are major parts of what's helping me focus in on figuring out what I want to keep and what I want and can afford to ditch. But finding the time to do some yoga at home on a daily or every other day basis, which would do me wonders, still proves problematic between job requirements and family obligations.

To be perfectly honest, the two things that I'd most like to ditch the most right now are things that I can't: Two of my current day-to-day stressors are the time it takes to properly take care of my BiPAP equipment and the time it takes to do the light therapy in the morning, which is a pleasant experience, but leaves me tethered to the table for 30 minutes instead of being able to go clean Kaa. To be more clear about the light therapy: When I'm actualy doing the light therapy, I find the light from the light box makes me feel warm, more refreshed than just waking up, and calm during the time the light is on. But as soon as I turn the box off, the daily rush to get out of the door starts and I am more rushed because of those 30 minutes of pleasure sitting in front of the box eating my breakfast and (usually) reviewing my overnight data or reading cpaptalk.

And between not being able (yet) to get up consistently before 8:00 and having a 10:00 MWF class, that's not much time in the morning for all the other stuff that I'd like to do in the morning after taking out the time for the light therapy and the Kaa cleaning. The time it takes for these two things is a low grade, small time stressor, obviously. But the thing is they happen every single morning. And as my bedtime keeps bouncing closer to 2:30 or 3:00 because that's when I get sleepy, those mornings are getting tighter and tighter. I probably just need to bite the bullet and tell hubby to kick me out of bed by 7:15 every morning regardless of how late I've been up.