One year -- whazzup with these numbers?

[Pugsy]

Those OAs happened because for some reason the pressure max of 11 was reached and it wasn't sufficient to get the job done. We don't know why but again the 2 most common reasons for higher pressure needs at times compared to other times....REM sleep or sleeping on your back or maybe combination of both giving a double whammy.

Those clear airway events...I have no explanation for that would be anything but a guess.
My first question would be were you really asleep during that time frame where the ugliest of CAs were flagged?

I don't think you need ASV from what we have seen so far...you have more nights where this ugly doesn't happen than you do have it happen.
If you end up needing ASV...I got one I will sell you that won't come near breaking your bank so don't fret over that if your insurance won't cover or your insurance copay is really high.
I have a PR S1 960 very low hour that I could be sweet talked out of.

[RubySnooze]

Thank you, Pugsy!

I'm pretty sure I was asleep during the icky stuff. Numbers have been getting worse lately. I'm trying to stay on my side, using Poligrip and/or Micropore tape for leaks, and no rx sleep drugs. Generally behaving myself unusually well!

The only thing I can think of that has changed is seasonal allergies. They have made an appearance in a big way. And it rather corresponds to the decay of my numbers. Think that could be causing trouble?

Would it make sense to raise the upper max pressure? Kinda hate to go there, since it didn't seem to work for me in the past.

Thanks for the reassurance about ASV. Yes, I have a monster deductible (am self-employed) and have had lots of medical expenses the past four years. Waiting to hear from Doc 2 on getting bilevel test drive scheduled.

Here's last night's Sleepyhead report:

[RubySnooze]

Had the bipap test drive today. Not sure what the point of that was, but it's done. They tucked me into bed with a few leads glued on my head, put my own mask on me, and ran the bipap for a while. I really couldn't tell any difference from my APAP. Later, the tech said she could activate "the flex feature" to see if that made any difference. That felt pretty smooth; liked it. But what the heck is a flex feature on a bipap?

Now the doc wants to do a bipap titration. An overnight at the sleep lab. Bleh.

Wonder if I should continue going with this guy's program. Or just stop the whole expensive process and buy a used ASV. I'm still super concerned that since this doc has not taken the time to figure out what's really going on with me, he will be back six months down the road saying I need to upgrade from the new bipap to an ASV. I'm a cash customer (super high insurance deductible) and do NOT want to end up buying three machines in 18 months.

Meanwhile, Sleepyhead numbers continue to be erratic. I will capture some screenshots and post them here in a bit. 'Preciate any suggestions!

[RubySnooze]

A collection of recent Sleepyhead stats.

Sep 25


Sep 26


Sep 30


Oct 3


Oct 6


Oct 9

[RubySnooze]

I am in a super cranky mood. Please don't read further unless you're up for a rant.

A year ago, after my PCP had me do a two-night home oxymeter test that showed 30 desats an hour (to the mid 70s), and told me I clearly have sleep apnea, I went to a local sleep specialist.
* His in-lab sleep study showed only hypopneas. No REM sleep. No problem; I was set up with a radically overpriced APAP and sent home.
* At my follow-up appointments, his PA had no problem with AHIs of 20 and 25 after five months of treatment.
* When I complained, she suggested I bag the APAP and get fitted for an oral appliance.
* After badgering her mercilessly, she finally agreed to change my wide open settings from 4-20 (where they had been the entire time I'd been on the machine) to 6-20.
* She had no suggestions, and made no referrals, regarding my allergic reaction to FFM head gear. Despite protecting my skin religiously for four months, I was still covered in a nasty rash the last time I saw her.
* She had no suggestions on ways to reduce my crazy leak level.
* There was no attempt to recheck my oxygen levels at any time.

Figuring there was no place to go but up, I decided to bag Dr. Arrogant and his braindead assistant, and made an appointment with the other local sleep specialist.
* First appointment: "I am so good, I fix everyone. There have only been maybe five patients the whole time I've been practicing that I couldn't help."
* Second appointment: "I have no idea why your treatment hasn't worked. I think you should try a bipap. Maybe you'll 'tolerate' it better."
* First appointment: "I'm not interested in [insert anything here]. We need to stick to the intake form." Does this doctor know that my AHI increases as I increase APAP pressure. No. Does he know that I have killer insomnia? No. Does he know that I haven't been able to use a FFM because of leaks? No. Does he know that I have a massive allergy to neoprene headgear? No.
* First appointment: Did doc look at any of the documentation I carefully printed out and highlighted? Or run a report from my SD card? Apparently not.

I've now humored this guy through the initial appointment, through a three-night in-home study (total bust because the equipment wouldn't work with nasal pillows -- even thought the tech swore it would, and because I hardly slept during the three nights), through a second appointment, and through a "bipap pap nap." Now he wants me to schedule an in-lab, overnight bipap titration. Since he doesn't know I spend the middle of every night wide awake for 2-4 hours, he has no idea what a waste of time and money that would be.

Today, a twinkie from his office called to schedule me for a bipap titration. I told her I didn't want to set up a titration at this point. Why not? Well, because I'm not convinced I'm going to buy a bipap machine. But the doctor says it will work much better for you. Well, the doctor can't tell me what's wrong, so I'm not sure why he feels that way. Well, he thinks you should try the bipap. Well, I'm more inclined to buy a used ASV so I'll have every possible tool to treat whatever odd thing is going on with me. Oh no! You don't want an ASV. An ASV is only for people with central sleep apnea. How do you know I don't have central sleep apnea? Or complex sleep apnea? Well, well... I don't want to buy a bipap and six months from now decide it doesn't work and have to buy an ASV. Which seems like a real possibility since no one can tell me why my current treatment isn't working. But you won't like an ASV; it's very invasive. It works like a ventilator. It's my understanding that an ASV can be set to function as a cpap, bipap or ASV. But it's going to force air into you. Not if it's not set as an ASV. Well, I've never heard of that; I don't think that's true. I'm going to put you on hold.

Ten minutes later, Twinkie returns extremely frustrated because the doctor is with patients and can't be disturbed. And is SNIPPY with me because I won't schedule a bipap titration.

I am so fed up with arrogant, incompetent medical "professionals." Not a single person in this ugly tale has helped my situation. And on top of it all, a flippin' office administrator is giving me ATTITUDE???

'Scuse me. I'm going out to the garage to scream at the top of my lungs.

[Pugsy]

I need to send you a bottle of my homemade Irish Creme and we can get drunk together long distance. If you don't drink...I will have a couple for you anyway.

"Invasive" my ass. There's a reason they are described as non invasive ventilation. There's a reason that Dr Krakow out sort of in your neighborhood uses a lot of ASV machines for people not doing well with standard cpap. Hell, he uses them for UARS.

Dumb ass Twinkies.

[RubySnooze]

LOL...let's put it this way. Even if I didn't drink before I was a PAP patient, I'd certainly be drinking now!!!

Dumbass twinkies. Worth a real bender.

I mean really, why is it such a monumental struggle to get the most basic, minimally adequate health care? And why am I THE BAD GUY for trying to improve my health? You may color me BEYOND DISGUSTED.

Interesting online info re Dr. Krakow. Often treats fragmented sleep / insomnia with ASV. Treats those who are not doing well on CPAP/APAP with... ASV. Has amazing results with...ASV. Thanks for sharing his name!

Meanwhile, my husband is wondering what that silly grin is doing on my face. He has no idea the words "homemade Irish Creme" are on my screen.

[RubySnooze]

First night on ASV. Sleepyhead stats below.

I felt like it was pushing a LOT of air into me. When I woke up just before 5, I opted to not restart 'cuz I was afraid my chest was going to be sore from all the pressure. So kind of a half-night of stats here.

* What is going on between 3:45 and 4:15
Patient triggered breaths appear to be at zero there
* No central events
* Very few obstructives; nearly all events are hypops
* Medium tidal volume is double what it's been on APAP

THANKS for any input!! [EDIT: Am now getting different numbers from Sleepyhead. Will post latest stats under the first stats for Oct 15 below.]

[RubySnooze]

Second night on ASV. No centrals, no obstructives. All hypops. From other forum posts, sounds like that's not unusual. So helpful to have all these forum posts available.

I felt like I dealt better with the pressure last night, but had a couple episodes that caused problems where the ASV was making me breathe really fast. I checked the settings and the BPM is on auto. Wondering if I should put a number in there instead? Or will this push by the ASV eventually train my own breathing, so better left alone?

Not sure how solid either night's numbers are, as I've been awake quite a bit.

[M'ohms]

Ruby,

It takes a while to become adjusted to your ASV machine. For now, leave the breath rate at auto. You will become adjusted to its rhythm and it will become adjusted to yours.

I remember at first that I felt my breathing was being rushed, but the machine will settle into your timing after a while. We breathe slower when awake and faster when asleep. That's why leaving it in auto is a good starting place.

I know it seems strange to have a machine that does unexpected things. Before long you will not even think about it. For example, my doctor prescribed a minimum PS of 0(!) when I first got my ASV. On my next visit, he couldn't figure out why my minimum PS was at 0 and he changed it to 5. Big change--I thought I was going to explode! It turned out that it took me about a week to get used to it, and I eventually increased it to 5.5 to get a higher tidal volume. That has worked out very well. I love my ASV!

[RubySnooze]

Thanks, M'ohms! Really appreciate your input. I will rack up some nights and see how things go.

I did much better last night (night 3 on ASV). Felt like I slept well. Better than I've slept in months! Didn't notice any pressure increases; didn't feel any weird breathing patterns. It does feel like I'm breathing deeper (a shallow breather in my natural state). AHI was 8.42 and I had some leak stuff going on. But no centrals, no obstructives, no periodic breathing. Just a bunch of hypops.

I'm feeling super encouraged about ASV life. Fingers and toes firmly crossed!

[RubySnooze]

Whoa, mama! Check this out:

[Pugsy]

I see your usual one block of time where you were up and awake...how was the rest of the sleep?

Congrats on the good numbers...tells us that these settings will work at least some of the time.

I am much more interested in your overall sleep quality in general than I am the overall AHI....but I do know it's nice to see those nice low numbers.
The other night I had something weird happen and had about 20 minutes of non stop hyponeas...one big ugly cluster in an otherwise picture perfect report. Still scratching my head over that one...have no idea what happened.

[RubySnooze]

I see your usual one block of time where you were up and awake...how was the rest of the sleep?

Last night and the night before I had way better sleep than usual. Yeah, still waking up for my middle-of-the-run sleep break , but the rest of those nights felt really good. Best two nights of sleep I've had in a very long time.

Congrats on the good numbers...tells us that these settings will work at least some of the time. I am much more interested in your overall sleep quality in general than I am the overall AHI....but I do know it's nice to see those nice low numbers.

I know. Getting excited about the numbers is kinda silly. But I take it as a sign that it's possible to have a good sleep night with good numbers. Very encouraging! Plus, I'm going back to sleep easier after my every-night wake-up session. Maybe it will eventually give up and go away.

The other night I had something weird happen and had about 20 minutes of non stop hyponeas...one big ugly cluster in an otherwise picture perfect report. Still scratching my head over that one...have no idea what happened.

Did it disturb your sleep? Funny, I just saw something similar on hubby's SH report from last night. About 40 minutes before he woke up, big fat cluster of mainly hypops, but a few obstructives and a couple centrals. His events are usually nicely spaced out. I was wondering if this was SWJ for him?

Did you feel like you'd had crappy sleep when you woke up? Hubs feels great today. He was shocked to see his AHI was almost 4 and he'd had A Giant Cluster.

[Pugsy]

Did it disturb your sleep?

Did you feel like you'd had crappy sleep when you woke up?

I am trying a new mask and good sleep has been slow coming but because of the mask.
I have had weird little clusters in the past and never had a clue and never could tell that they impacted sleep at all.
Most of time it's something I see that happened several nights ago and I don't normally see or feel any difference in anything when I have these weird little clusters.
I don't think a random lone cluster does anything to me that I can tell anyway.
Now if I saw lots of them or they happened every night I might pay more attention.

I never wake up wanting to run a marathon. I have never ever been a "morning" person.
The best cpap therapy in the world isn't going to make me into something I have never been.
But I don't wake up with massive headaches and feel like I just ran a marathon or got run over by a bus anymore.