The magic ten seconds

This is just me getting annoyed at my situation, so feel free to ignore this rambling.

I've been using my non-brick for just over a month now (I racked up a whopping five nights usage on what I was originally subjected to), and I'm getting much less "sleep" than I used to.  Of course, that prior "sleep" was marred by being too long, as I had been told to see if going to bed an hour earlier would make me less tired.  Now I get the fun and joy of being teleported between streetcar and subway stops, and three more hours a day to go about in a daze.  It probably doesn't help that a recent move inadvertently tacked a fourth extra hour onto my day.

Anyway, while taking Teleporting Transit Commission vehicles around town can be interesting, not being able to stay awake while attempting to study is not.  Fortunately, I realized that the term was not going well a week before the drop date.  Now I have no classes until January and no profs trying to convince me to visit accessibility over not being able to remember which ending matches which case when declining (I think part of the issue was that I was otherwise good at translating at a class-appropriate level).

In place of Latin, I bother my DME once a week, every week.  With just the usual sorts of issues and requests one could have, but weren't mentioned in what they told me, like how the mask they fit me with was too large (which resulted in a special order for a Swift FX for Her), what hose covers they carry (nil), and how to deal with the choice between my nose hurting and rainout (um, I don't know, you don't have the S9 Escape anymore, you can try hanging the hose off various surfaces that don't exist).  This week, I plan on asking them about non-machine-specific heated hoses.  Last week, they mentioned that they would call up the sleep clinic if I kept having issues.

Which brings me to the line in the sand, ten seconds.  Last week, the DME read my card because of such minor irritations as waking up feeling like I can't breathe.  They claim that all is well in the world as my average AHI is 3.3.  Who knows what would happen if there were a Pressure Pulse Index on those reports; they might have taken a closer look at the download if they saw that a typical PPI for me is around 40 (no, my events aren't long enough to contain 12 pulses apiece).  Seven-second not-apnea gaps happening multiple times in a minute, and other such fun.  The ignored pages 4 - 10 of the Encore Anywhere report might have shown them that on many occasions, the flow waveform looks like someone ran it through a half-wave rectifier, and on others, like a square wave (yes, I am ignoring my more common sawtooth, shark tooth,  and boring forms).

I wonder what I'll be subjected to at the sleep clinic if the DME do follow through with their threats.  The doctor they were mentioning by name isn't my respirologist, but is instead the clinic's neuropsychiatrist.

So to summarize, you have an ahi of 1.4 and still feel shitty?

How are leaks?
J

Oddly enough, once getting real sleep, I found I suffered both from insomnia and simultaneously realized just how tired I was. I think you become numb to the tiredness after its been prolonged for months. Then when you get some real sleep your body really wants it (having once again acquired the ability to sense tiredness) but on the other hand, having become acclimated to getting by on almost no sleep, getting sleep makes it hard to sleep. Its a catch 22 and it took me about 4 months to sort it out to where I could sleep more than 4.5 hours a night. Good luck, persistence will pay off. I am up to an average of 6.5 hours a night now and some nights I sleep 8-9 hours.

jamiswolf wrote:So to summarize, you have an ahi of 1.4 and still feel shitty?

How are leaks?
J

For my current mask (12 days), SleepyHead reports an average of 16.50 and 90% of 18.43.

Tetragon,
Sorry that you're having frustrations and still feeling bad. My numbers have never been that good...yet I actually feel pretty good. It's such a variable thing.

You say you added another hour to your supposed "sleep" time which is messing with your commute. I'd forget about the extra hour if it isn't translating into feeling better or an actual extra hour of sleep.

You hear people talk about the sleep debt they've built up. Damage to the body systems that takes time to heal once your sleep is back on track. Maybe that's part of what you're going through.

But hang in there and follow the common advice to always wear your cpap while sleeping...even if it's a nap. Wish I had more useful suggestions.
Jamis

jamiswolf wrote:You say you added another hour to your supposed "sleep" time which is messing with your commute. I'd forget about the extra hour if it isn't translating into feeling better or an actual extra hour of sleep.

Not quite. I started out trying for eight hours, and that time frame includes when my iron levels were low. Then my doctor found that my my ferritin levels had increased to a normalish level, and it could no longer account for how tired I looked. So I was told to increase to nine hours. After a month of that, and a harder time getting to sleep, my doctor sent me in for my first sleep study. I had the fun times of meeting a respirologist whose opinion was that in spite of having sleep apnea, my real problem that needed to be dealt with was insomnia. I got a prescription for CPAP, and some book titles for attempting to deal with insomnia on a DIY basis (note: none of my textbooks were on that list). I then switched to trying for six hours of sleep, which wasn't too bad, although it was a bit harder to fight off sleep in lecture. Then came a daylight savings switch that wasn't handled well and a move that happened at a similar time, which tends to leave me with only five hours.

jamiswolf wrote: But hang in there and follow the common advice to always wear your cpap while sleeping...even if it's a nap. Wish I had more useful suggestions.

And that's how I know that when I had a 102 minute nap earlier today, the AHI was almost five, mostly clear airway events (as usual). I don't normally nap, but today it reached a point where I couldn't fight off the sleep.

Tetragon,
I'm actually fairly new at xpap therapy and there are many others out there better qualified to assist you in trouble shooting your situation. Now that your initial rant is over ...why don't you post a summarized 'situation report" as well as some samples of your data reports. That's where the rubber meets the road...so to speak.

If you are mostly having centrals, well then why? Are they cpap pressure induced or non-iatrogenic? Perhaps a different and more sophisticated machine might be needed. If you can lay your hands on a recording pulse oximeter (perhaps from MD's office) it would be interesting to know if you're having oxygen desaturations and how low they are getting.

So your anemia situation is under control now?

Robysue (a member here) has a good blog on cpap insomnia and posts very useful advice here on the forum...so she could be a useful resource. I don't have a link but if memory serves me, her blog is called "Adventures in Hoseland"

Above all...persist.
James

jamiswolf wrote:I'm actually fairly new at xpap therapy and there are many others out there better qualified to assist you in trouble shooting your situation. Now that your initial rant is over ...why don't you post a summarized 'situation report" as well as some samples of your data reports. That's where the rubber meets the road...so to speak.

I'll be able to tomorrow night. I need to drag my laptop out to a cafe for a steamer (milk, as prepared for a latte) and wifi for the samples. I don't hold much faith in the legibility of cell-phone photos in place of nice screenshots.

jamiswolf wrote:If you are mostly having centrals, well then why? Are they cpap pressure induced or non-iatrogenic? Perhaps a different and more sophisticated machine might be needed. If you can lay your hands on a recording pulse oximeter (perhaps from MD's office) it would be interesting to know if you're having oxygen desaturations and how low they are getting.

I don't know why I'm having centrals, although, by their usual frequency, my guess is that I may just be waking up or moving at various intervals. They tend to be clustered in time. I don't think my pressure is high enough to cause any problems; it's a mere 7cm, which doesn't even stop snoring (that was noted on the single page I have about my titration, that it took a pressure of 8cm to stop snoring, but I was prescribed 7cm instead). I'm not sure about how useful a pulse oximeter would be. My saturation didn't really drop all that much in either the initial study (went all the way down to 95%) or the titration.

jamiswolf wrote:So your anemia situation is under control now?

Should be. I'm no longer on a dose of iron that gets strange looks from pharmacists when I clear out their shelves. Either that or they're used to me.

jamiswolf wrote:Robysue (a member here) has a good blog on cpap insomnia and posts very useful advice here on the forum...so she could be a useful resource. I don't have a link but if memory serves me, her blog is called "Adventures in Hoseland"

I've read her blog.

jamiswolf wrote:Above all...persist.

Why would I stop. I now have an air tube that lets me keep my entire head warm, under my blankets, without any pesky air holes near my face to give me a cold face. And the new blanket I just picked up even dampens the noise from the vents (note: I am not blocking the vents, the blanket's fleeciness is nice acoustically).