What To Do? Self Titrating

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
joeshmoe90
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What To Do? Self Titrating

Post by joeshmoe90 » Fri Jul 03, 2015 6:30 pm

Hello,

We have terrible medical insurance. They won't even cover the cost of an office visit. We have to pay 70%.
They will, however, "conditionally cover" a sleep test if it's determined "medically necessary" along with a portion of the equipment. The deductible is $3K and even then, we're still on the hook for 30% after the deduct.

So I have Sleep Apnea. My wife has witnessed me not breathing and sleeping for the last 10 years. Last year, I had to go to the ER when I woke up with violent chills, chest pain, racing heart, shortness of breath, etc. It's happened before, but never this bad. The chest pain was scary. Last Jan., I bought a boil-n-bite mouthpiece which helped a lot, but not entirely. I've had a few more episodes since, but nothing near that day I went to the hospital.

My dilemma is primarily a money issue. I cannot afford these astronomical prices they want for sleep studies and subsequent equipment. We're already paying for previous medical bills and dealing fallout from being unemployed and my wife being let go after 17 faithful years of service to her employer. We're close to broke. Our income, however, is just enough to be considered ineligible for any kind of assistance and the available "affordable" gov't healthcare plans cost more than what we already pay. Anyway...

This week has been bad for me. I had multiple, full wake arousals with sweating, and staving for air, even with me sleeping on my stomach. This is new. When I doze off, almost immediately I stop breathing. This not the typical OSA that I've been dealing with. This is Central Apnea. My wife says the same when observing me. However, last night, I got SOME sleep and was fine. This morning, no headaches, no head pressure, no need to urinate like usual. I can often go weeks without having a full awake arousal, unless I roll over onto my back. Then, that's all she wrote. Guaranteed apneas and full arousal with all the life- threatening goodies to go along with it.

So, what to do?

Hopefully, with your help, I can do this without a sleep study til I can afford one.

I bought a REMstar Pro Auto M series A Flex w/humidifier. I'm taking a chance by purchasing it used from an online seller. In "good" working condition. Not sure if I'll like it, but it comes with the Mirage Swift II Nasal Pillow system.
I'll definitely need your help getting started. I know this goes against all the rules, but I have no choice.

I think the most agravating part for me is knowing we HAD excellent health insurance back in early 2013 (just before the economy crashed the healthcare frenzy) before we knew what was going on with me. Never had to use it with the exception of my wife having to go the hospital for an ectopic pregnancy. Didn't pay a dime. All but the catastrophic things were covered 100% Even then, it was 90/10 coverage. Office and outpatient visits were $15-20 co-pay. All those premiums we paid over the years, gone. Had known what was going on, I wouldn't be typing this today.

I apologize for the long, sob story. But it is what it is.

Thanks for this forum and the support it offers.
Last edited by joeshmoe90 on Tue Jul 14, 2015 12:22 pm, edited 1 time in total.

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kaiasgram
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Re: What To Do?

Post by kaiasgram » Fri Jul 03, 2015 6:40 pm

Hi Joe -- Would you say more about why you think you have Central Sleep Apnea? Nothing you described points directly to that. The reason it's important to clarify is that if you truly have CSA you would need a different type of machine than the one you bought.

It is not difficult to go the DIY route when you have plain old obstructive sleep apnea -- many people have gotten help here to do just that. I'm hoping that's the case for you too but we need to know more about your concerns about the possibility of CSA. Some of what you describe actually sounds like OSA -- like the fact that you had a little improvement with the mouthguard and that you're worse when you sleep on your back.

Welcome to the forum. We'll do whatever we can to help you out.

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Last edited by kaiasgram on Fri Jul 03, 2015 6:49 pm, edited 2 times in total.

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Julie
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Re: What To Do?

Post by Julie » Fri Jul 03, 2015 6:41 pm

Hi Joe - the first thing I'd advise is downloading (free) SleepyHead software from the first 'Announcement' on main pg because without it, you can't know what's going on or think about fixing it. It also works on Macs... so get the correct DL.

Lots of people self-titrate (which is what you'll be doing) and it's not a big deal, but it's also important that you know how to work the machine - how to change air pressures, etc. and decide (when lying down - your face changes a lot then) whether that mask (of many diff. ones out there) is right for you, or at least doesn't leak like a sieve or kill your face. There are a lot of people here who can help with it all... the only thing I suggest is that you try to stay with this one thread for now (you can always change the title some re diff. questions) so we all can follow your progress.

Important for now do whatever you can to not sleep on your back as it provokes more apneas - once you're on C- or Apap, it might not be as important, but til then...

From your description of the symptoms you had, it sounds to me like you might have some completely unrelated condition going on, and I'd talk to your MD about it because not everything's about OSA.. people new to it tend to see everything as if it is.

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kaiasgram
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Re: What To Do?

Post by kaiasgram » Fri Jul 03, 2015 6:46 pm

Hold on Julie -- The M Series machines are not supported by SleepyHead.

Also -- OP expressed concern that he has Central Sleep Apnea, in which case the APAP may not be the right machine at all. I don't actually see anything in his post that strongly suggests CSA but we need more info from him about why he thinks he does.
Julie wrote:Hi Joe - the first thing I'd advise is downloading (free) SleepyHead software from the first 'Announcement' on main pg because without it, you can't know what's going on or think about fixing it. It also works on Macs... so get the correct DL.

Lots of people self-titrate (which is what you'll be doing) and it's not a big deal, but it's also important that you know how to work the machine - how to change air pressures, etc. and decide (when lying down - your face changes a lot then) whether that mask (of many diff. ones out there) is right for you, or at least doesn't leak like a sieve or kill your face. There are a lot of people here who can help with it all... the only thing I suggest is that you try to stay with this one thread for now (you can always change the title some re diff. questions) so we all can follow your progress.

Important for now do whatever you can to not sleep on your back as it provokes more apneas - once you're on C- or Apap, it might not be as important, but til then...

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Last edited by kaiasgram on Fri Jul 03, 2015 6:51 pm, edited 1 time in total.

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Julie
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Re: What To Do?

Post by Julie » Fri Jul 03, 2015 6:51 pm

You're right about the machine, but I was already hitting send when I saw your note...

joeshmoe90
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Re: What To Do?

Post by joeshmoe90 » Fri Jul 03, 2015 7:58 pm

Hey guys,

I very well may not know what I'm talking about. I just know that I'm not breathing. It would be great if it's just OSA.
Maybe I do have some other condition as well.
Last edited by joeshmoe90 on Fri Jul 03, 2015 8:19 pm, edited 2 times in total.

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kaiasgram
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Re: What To Do?

Post by kaiasgram » Fri Jul 03, 2015 8:10 pm

joeshmoe90 wrote:Hey guys,

I very well may not know what I'm talking about. I just know that I'm not breathing. It would be great if it's just OSA.
Maybe I do have some other condition as well.

What other details can I give you?
Any other details you think could be relevant would be good to share.

One way we could proceed would be to assume for the time being that it's just OSA. You could start using the machine and software to examine the data it's recording. We'd know in short order if there is a problem with centrals and then another plan would be in order. If it turns out to be garden variety OSA then you'd be on your way to fine-tuning your machine settings and taking care of your health.

Is there any chance you could afford a newer model (but still second hand) APAP machine? It would make data analysis a little easier because you'd need only an SD card reader (if your computer doesn't already have one built in), and SleepyHead software (free). If a newer model is not an option I think you would need a special card reader and I'm not sure but I think Encore software might work -- someone who knows more about Encore will stop by with the info.

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Last edited by kaiasgram on Fri Jul 03, 2015 8:11 pm, edited 1 time in total.

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palerider
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Re: What To Do?

Post by palerider » Fri Jul 03, 2015 8:11 pm

joeshmoe90 wrote:I bought a REMstar Pro Auto M series A Flex w/humidifier. I'm taking a chance by purchasing it used from an online seller. In "good" working condition.
see if you can return it and get a respironics system one auto machine, or a resmed s9 autoset instead.

they provide much more data, and are auto sensing to determine whether it is central, or obstructive apnea, and respond accordingly.

you can get buy with a M machine, but it's harder.

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joeshmoe90
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Re: What To Do?

Post by joeshmoe90 » Fri Jul 03, 2015 8:20 pm

What other details can I give you?

EDIT:

I guess I was under the impression CSA is apnea caused by anything other than obstruction, ie throat, tongue airway.
It's still quite tricky to get just the right position, but at least with the mouthpiece and lying down on my front side, I mostly can get some sleep. Albeit, not deep or restful sleep. What's happening lately is I simply breath shallow and then cease, according to my wife. I can somewhat attest to that since I have caught myself doing it. I can sense I'm not breathing, but my airway "seems" fully clear. I'm the one half asleep. What do I know? LoL
There is the possibility that I'm sealing my tongue against the roof of my mouth while continuing to try and mouth breath, and I'm just thinking it's CSA. As I'm simulating doing that right now and it's impossible to get air. So, it could be that.

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palerider
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Re: What To Do?

Post by palerider » Fri Jul 03, 2015 8:31 pm

joeshmoe90 wrote:What other details can I give you?

EDIT:

I guess I was under the impression CSA is apnea caused by anything other than obstruction, ie throat, tongue airway.
It's still quite tricky to get just the right position, but at least with the mouthpiece and lying down on my front side, I mostly can get some sleep. Albeit, not deep or restful sleep. What's happening lately is I simply breath shallow and then cease, according to my wife. I can somewhat attest to that since I have caught myself doing it. I can sense I'm not breathing, but my airway "seems" fully clear. I'm the one half asleep. What do I know? LoL
There is the possibility that I'm sealing my tongue against the roof of my mouth while continuing to try and mouth breath, and I'm just thinking it's CSA. As I'm simulating doing that right now and it's impossible to get air. So, it could be that.
csa means you don't TRY to breath, and there is no obstruction, anywhere.

obstructive means something, somewhere is blocking the air.

this will help clear things up: https://www.youtube.com/watch?v=-gie2dhqP2c

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Accounts to put on the foe list: dataq1, clownbell, gearchange, lynninnj, mper!?, DreamDiver, Geer1, almostadoctor, sleepgeek, ajack, stom, mogy, D.H., They often post misleading, timewasting stuff.

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kaiasgram
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Re: What To Do?

Post by kaiasgram » Fri Jul 03, 2015 8:37 pm

Sure sounds like obstructive apnea from the way you describe it. Do you snore? That could be another data point, though it's possible to have OSA without snoring.

What about the machine question -- can you get a newer model?
joeshmoe90 wrote:What other details can I give you?

EDIT:

I guess I was under the impression CSA is apnea caused by anything other than obstruction, ie throat, tongue airway.
It's still quite tricky to get just the right position, but at least with the mouthpiece and lying down on my front side, I mostly can get some sleep. Albeit, not deep or restful sleep. What's happening lately is I simply breath shallow and then cease, according to my wife. I can somewhat attest to that since I have caught myself doing it. I can sense I'm not breathing, but my airway "seems" fully clear. I'm the one half asleep. What do I know? LoL
There is the possibility that I'm sealing my tongue against the roof of my mouth while continuing to try and mouth breath, and I'm just thinking it's CSA. As I'm simulating doing that right now and it's impossible to get air. So, it could be that.

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avi123
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Re: What To Do?

Post by avi123 » Fri Jul 03, 2015 8:40 pm

joeshmoe90, do you believe that you can feel or diagnose the kind of apnea that you are having?

http://www.resmed.com/us/en/consumer/di ... apnea.html

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tedburnsIII
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Re: What To Do?

Post by tedburnsIII » Fri Jul 03, 2015 9:08 pm

If it were me and in OP's position I'd just auto-titrate with a data capable machine (does NOT have to be compatible with SleepHead, but better if it is compatible-mine isn't) at a wide range of beginning and maximum pressures to start. But I'd go higher than 4cm on the low end.

I'd also get an overnight recording pulse oximeter and check out my sats and desats while going through this process. It's a temporary sort of 'fix', assuming that he does not have complex sleep apnea with a CAI of >5.

Best wishes, OP!
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Pugsy
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Re: What To Do?

Post by Pugsy » Fri Jul 03, 2015 9:40 pm

Exactly which M series machine do you have?
The Pro M series has CFlex and isn't an auto and doesn't have AFlex.
The Auto CPAP has AFlex and is an auto adjusting (apap) machine.
The data on either LCD Screen is very limited but you can do what you are wanting to do with it within some limitations.
Get the provider/clinical manual from here...make sure you request the correct manual.
http://www.apneaboard.com/adjust-cpap-p ... tup-manual

You are going to want to erase prior user data from the machine so that data doesn't get mixed in with your data. It's easy to do. I think the clinical manual explains how...if it doesn't I have those instructions available somewhere.

There are better nasal pillow masks than the Swift II. ...more comfortable for sure.
I used to have the M series machine and I did just what you are wanting to do with the machine with both my sister and her husband. It can be done but takes some work and some education.

There is software available to see more than the AHI and leak data that is on the LCD screen but you need a special card reader that costs around $75. I can help with the software (free) but I don't have a card reader.
I suggest start with what you have now and see what happens and then see if it is worth putting the money into the card reader. The M series machines were replace by machines that used SD cards for data transfer and not the smart cards. These newer machine also gather more comprehensive detailed data. Before spending money on the card reader it might be better to put that money towards one of the newer model machines that use SD cards.

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joeshmoe90
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Re: What To Do?

Post by joeshmoe90 » Sat Jul 04, 2015 12:56 am

palerider wrote: csa means you don't TRY to breath, and there is no obstruction, anywhere.

obstructive means something, somewhere is blocking the air.

this will help clear things up: https://www.youtube.com/watch?v=-gie2dhqP2c
Thanks, pale. I watched that vid last night.

As for the Central SA and not trying to breath, that's exactly what it feels like and what my wife says she observes. So while the major OSA is mostly under control with the mouth piece and sleeping position (except when I turn onto my back or even on my side) Not trying to breath is what appears my issue now. According to my wife, my airway sounds clear, but breathing becomes shallower and shallower until it stops. "Sounds clear" meaning that the preceding and proceeding inhales and exhales were open and clear prior to the shallow and subsequent cessation. In other words, no snoring.
She claims she hasn't heard me snore since using the mouth piece (unless of course, I turn on my back) That's been about 6 mos. now.

This is gonna sound weird, but at times (occasionally), I'm aware while I'm asleep that I'm breathing. I've actually opened my eyes and realized that I was either holding my breath or exhaled and hadn't inhaled. I then resume breathing as if a switch had been flipped and I might do that several more times until I get into a sleep that I cannot as easily awake from. It's usually then that I'm awoken gasping for air, in a cold sweat, chest pain etc. These events IMO seem to be as bad or worse than my OSA due the fact that it seems to be neurological or psychological. That's another concern I have with all this. What kind damage have I done or am doing having headaches/pressure and neck pain. When I get a consecutive nights sleep, these things generally all go away until the next time.
kaiasgram wrote:Sure sounds like obstructive apnea from the way you describe it. Do you snore? That could be another data point, though it's possible to have OSA without snoring.

What about the machine question -- can you get a newer model?
No. No snoring. Unless I flip onto my back which I still do more often than I would like. No matter what I do, some nights, I just end up on my back.

As for the machine...I don't know. How much am I looking spending? I spent $100 on the REMstar Pro. BTW, I'm guessing the seller misadvertised the unit specs. according to pugsys info. No such thing as an M series Auto with A-flex?
avi123 wrote:joeshmoe90, do you believe that you can feel or diagnose the kind of apnea that you are having?

http://www.resmed.com/us/en/consumer/di ... apnea.html
I can sure try. I have the power of the 'Force' with me. LoL Thanks for link.
tedburnsIII wrote:

I'd also get an overnight recording pulse oximeter and check out my sats and desats while going through this process. It's a temporary sort of 'fix', assuming that he does not have complex sleep apnea with a CAI of >5.

Best wishes, OP!
I'll look at getting a oximeter. Thanks.
Pugsy wrote:Exactly which M series machine do you have?
The Pro M series has CFlex and isn't an auto and doesn't have AFlex.
The Auto CPAP has AFlex and is an auto adjusting (apap) machine.
I don't actually have it yet. It was a panic purchase. Yeah, I might have fudged the bucket by buying it.
This is how he listed it:
"Respironics REMstar Auto M Series A-Flex Heated Humidifier Model 1051158"

I should have known better when he claimed to not know how to access the total therapy/blower hrs. I researched enough about the REMstars to know that the 1051158 number is just the humidifier model number, and not the actual blower model number, correct? Guess I didn't research enough. He claims it's an Auto, but none of pics show "Auto" anywhere.

At the very least, if it doesn't work out, maybe I can sell it and get my $100 back.