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[Diagnosis] Am I just an apnea wannabe?
#21
RE: Am I just an apnea wannabe?
That's taking stuck on Fisher and Paykel masks to the extreme.

Coffee
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#22
RE: Am I just an apnea wannabe?
(06-01-2021, 08:27 AM)Gideon Wrote: Yes the CPAP is helping you.  If you had a BiLevel machine such as the VAuto I would have you increase your PS to 4 from the 3 it is currently

In your opinion, would I have a better chance of achieving restful sleep by trying a BiLevel machine? I could try one of the monthly rental services or buy a used one. As I get better at reading the graphs, I can see what a flow limitation is, and I can understand why a PS 4 might help me. I am willing to do what it takes to feel good in the morning.

(06-03-2021, 10:50 AM)cathyf Wrote: Next look at your pressures -- what you see is that as long as you are awake, your machine keeps your pressures at 6/4. But the instant you fall asleep it zooms up to 10/7, 11/8, even 12/9, and it stays up there, too. The only thing that drops your pressures back to baseline is waking up! (Try lying in bed awake for a few minutes after you wake up, rather than shutting the machine right off. You will see zero flow limits as long as you are awake, and the machine will drop the pressure back down to minimums. It drops more slowly than it rises, but if you wait long enough it will go all the way.)

So, to answer the question that you started with, your machine sure believes that you have sleep apnea!

What this also means is that you should set your minimum pressure to whatever feels most comfortable when you are awake, because the only time you will be spending there is when you are awake. Setting your minimum to 6 like you have it means that your awake pressures are 6/4. If you set your minimum to 7, then your awake pressure will be 7/4 -- you will have your full EPR when awake, too. If you look at your graph, you see that the machine doesn't take you below nine when asleep, so a minimum of 8 or 9 would work, too -- whatever is most comfortable.

This is all incredibly helpful. Thank you. And for some reason, it really does make me feel good that my machine is validating me and saying, "yes dear, you are having trouble breathing in your sleep." After being dismissed by the sleep doctor I saw, I kind of want to send him a graph and a note that says, "Told ya." But looking at the overnight test he gave me, it does show a high percentage of "flow limited breaths." So why didn't he care about that?

(06-03-2021, 11:03 AM)SarcasticDave94 Wrote: FFM: I used the F20 for about 2 years, both AirFit silicone and AirTouch foam. It was a struggle to maintain leak control. When I tried the Fisher and Paykel Simplus and Vitera full face, I went ahead and made the Vitera my new go-to. Do a bit of research and I think you'll like it. The only perceived negative is the forehead bar, but it doesn't touch my forehead so no biggie really. Positives? I think it's lighter than the F20. It's far easier to get control over leaks, with less strap tension. These F&P masks have RollFit a bellows so go very light on straps tension and it'll work great. Comfort and control...2 checks for the win column for me.

I'll give anything a try. The only place I'm having trouble is leaking on the sides of my chin when I roll onto my back in my sleep. I have a small chin, so when my jaw falls back, there's not much for the mask to hold on to, really. The cervical collar seems to fix that problem, but it's a pain and it would be nice not to use it.
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#23
RE: Am I just an apnea wannabe?
(06-03-2021, 06:26 PM)redvinesfamily Wrote: But looking at the overnight test he gave me, it does show a high percentage of "flow limited breaths." So why didn't he care about that?
As far as I've been able to tell, sleep doctors only care about what happens during sleep studies. I had sleep studies in November and April, and they looked totally different from each other. I also have 6.5 years of sleep data on my card, but they don't care about that because that wasn't in their lab hooked up to their machine.
Of all 3 in lab sleep studies I've had, flow limitations weren't mentioned in any of them. If you look at my data, I spend all of my sleeping time, every night, having significant flow limitations that are only stopped by me waking up -- you can see them plain as day in the wave form. But those flow limitations didn't make any criteria as "events" so all of those arousals are scored as "spontaneous" even though they are clearly being caused by the flow limits!
The machines are programmed to respond to flow limits, so we have this bizarre disconnect where the gold standard of treatment for sleep apnea (the APAP) is treating something that the "experts" don't consider to even be included as part of sleep disordered breathing.
(When I drove the hour+ to the big-city sleep center for my consultation with the specialist, they asked for my card and disappeared with it, came back with it later. The night before I had slept 5 hours and had an AHI of 11. If they had actually looked at the data they never should have let me drive home!)
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#24
RE: Am I just an apnea wannabe?
(06-03-2021, 10:27 PM)cathyf Wrote: As far as I've been able to tell, sleep doctors only care about what happens during sleep studies. 

But the doc I saw spent at least 45 minutes with me, telling me that I need to not to do any thinking or work or chores or experience strong emotions via conversation or media past 6:30 pm if I need to get up at 6:30 am.  Rolleyes

I just read through your thread, and I'm curious if you are going to try the vauto. There's a used one near me, and I also see a rental site online that will rent them for $70/month. I have no idea about this company, but I guess it's worth a shot. Want me to be the guinea pig and try it first?  Big Grin
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#25
RE: Am I just an apnea wannabe?
What name is the company that's selling the used machine? Just the name not a web address.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#26
RE: Am I just an apnea wannabe?
It's just a human on a classifieds board selling the machine. When I zoomed in on the picture, it didn't look clean to me, so I will likely pass. I was considering a rental from the CPAP Box. 

I would also sink the money into a new machine, knowing I could sell it if I saw no improvement. I just don't know if that's a worthwhile venture, and I am at a strange place where I know the people on this board are far more likely to know if that's a good gamble than the doctors I've spoken with. 

Interestingly, my sleeping heart rate has gone down on the CPAP, and I've had zero palpitations since I started a few weeks ago. So that right there seems like it might interest a doc, but I imagine it would not.
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#27
RE: Am I just an apnea wannabe?
Silly docs, you never know how they react to our health concerns.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#28
RE: Am I just an apnea wannabe?
(06-04-2021, 10:47 AM)redvinesfamily Wrote: I just read through your thread, and I'm curious if you are going to try the vauto. There's a used one near me, and I also see a rental site online that will rent them for $70/month.

I'm really undecided. I have a followup with a PA in the big hot-shot sleep center two weeks from Monday. Ever since the wonderful folks here helped me figure out the cervical collar, I've been wondering if I'm just an apnea wannabe? Maybe what I can do is to sleep without a cpap machine but with a cervical collar? I think that I have convinced myself over the last 2-1/2 months that I can use the collar to create or prevent truly massively impressive apnea clusters pretty much at will. And that maybe the massive flow limitations are just me, asleep, and I've adapted to breathing that way since birth, and I shouldn't worry about them. The cervical collar is certainly less invasive (and cheaper!) than a CPAP -- it doesn't need to be plugged in so I can go camping!

On the other hand, I have successfully (through several thousand dollars of the insurance company's money and several hundred of my own) produced a sleep study with truly impressive numbers which "qualifies" me for an insurance-paid-for machine and supplies. The idea of having a brand-spanking-new A10 forHer that does RERA detection, the forHer algorithm, etc... Or maybe a brand spanking new A11 if one comes out in time? (Ironically, I got my machine on Oct 10, 2014, and I was first in line at my DME. I can tell that it was powered up for the first time on Sep 10, 2014 -- it really was hot-off-the-assembly line when I got it! I really wanted a "forHer" but it would have meant another 6 weeks of back order. So my machine is a first generation and doesn't have those things which got added later. And here I am seven years later in exactly the same place but with the next model. The one difference is that I have a machine, and a contec pulse oximeter, and seven more years of knowledge.) Seven years ago I was 3 weeks out from an ApneaLink home study where I had desaturated down to 79% but still had to wait 2 months for a lab study and couldn't get a prescription until afterwards. It was 5 months between diagnosis and starting treatment. While my PA was clearly freaked out by a 79% desat, everyone else was blithely unconcerned that I was waking up multiple times per night not breathing and literally afraid to go to sleep.

I've had a kind of ugly year healthwise (I'm coming up on blowing through a $3000 out-of-pocket max for the second year in a row.) I've come to understand that I have real and serious issues with anxiety and trust, and specifically focused on medical treatment and medical devices. The folks here like SarcasticDave with his healthy disdain for the idiocy of sleep "medicine" are a huge help to me. They reassure me that I'm not crazy!

I figure these are my choices:
  1. Go to the appointment with my data and my cervical collar and say "thanks but no thanks I've cured my sleep apnea with the help of my friends at apneaboard and don't need you."
  2. Go to the appointment and play their stereotype of the ditzy stupid apnea patient who needs to be bullied into "compliance" with using the magical machine that I can't possibly understand like their god-like selves. Take my prescription for what I can get and make my own way with it. Which is their model of sleep "medicine" anyway -- bully the patients when it's convenient to pay attention to them and them abandon them to their own devices when it's inconvenient. Basically I take the "please don't throw me into the briar patch" strategy because I'm now happily at home in that briar patch.
  3. Try to treat the fancy high-powered sleep center people as if they were real medical professionals deeply interested in the well being of their patients, eager to learn from the weird interesting cases so that they can take better care of everyone. If they were really those kinds of medical scientists, they would be all in for at least a couple of months rental of a vauto to see if it would make my sleep architecture better.
I've got until June 21st to figure it out...
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#29
RE: Am I just an apnea wannabe?
IMHO, Option 3, Treat them like a peer and show them printouts that illustrate the issue you want to discuss, Then Pull out your laptop and ask if they want to drill down into the data. And by all means print the charts of same settings with and without a collar. (go in the wiki and copy the study name that does into the "cervical alignment" stuff.

Under no circumstances Option 2. You have knowledge on the subject, use it.

Option 1 is the fall back if they treat you like an idiot.
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#30
RE: Am I just an apnea wannabe?
(06-04-2021, 03:43 PM)cathyf Wrote: I've had a kind of ugly year healthwise (I'm coming up on blowing through a $3000 out-of-pocket max for the second year in a row.) I've come to understand that I have real and serious issues with anxiety and trust, and specifically focused on medical treatment and medical devices. 

I hear ya. My family is currently at $4,039.70 of a $10,000 out-of-pocket max in June. But we've not yet met our $3,000 deductible. Because diabetic supplies don't count toward the deductible. It's insanity.

And I get the mistrust, as well. I've been diabetic since I was 11, and I have had docs tell me the most bizarre things about diabetes. Most of them only know about Type 2 diabetes. I now finally get excellent care with an MD and NP who are both lifelong Type 1 diabetics. Maybe that's the trick. Find a doc who suffers from precisely the sleep problems you've got.

Good luck with your decision.
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