I need hand holding

[Bigcatdaddy]

Hello, I was diagnosed with mixed apnea of a central and obstructive type approximately 15 years ago. I have never been able to wear a mask longer than several nights and I have three CPAP type machines sitting in the closet. I am at an age now where I can no longer afford, interrupted sleep. And before I just accept the fact that I will just have to live with untreated apnea, I want to take a last serious look at treating my condition. I have not slept with my spouse for 15 yrs. People say they can hear me snoring 1 level up from my basement bedroom with my door closed and they are on the other side of the house.

The sleep professionals in my area are not much on information, the MD’s have never spent follow up time with me—I get farmed off to sleep technicians that look at no data, they just hand me a bag of tubes and masks and tell me to “try these”. No one has ever “fit” a mask. They just send me three sizes in the mail and tell me to use the one that feels best. I have been to several follow up sleep studies with my mask/machine for a titration sleep, and nothing has seem to have helped.

I am not asking y’all to help me right here in this thread—and I see you always tell newbs to read the old posts. My problem? 80% of the posts are foreign language to me.

My issue—panic, claustrophobia falling asleep, and if I do fall asleep—waking up in 1-2 hrs in panic and the Sahara desert in my mouth. The machine and gear end up chucked as far as I can toss ‘em.


Is there a place on these forums where some folks would walk me slowly through the data here, tell me what posts to look at (there are hundreds), and kind of walk with me to a point where I am now giving you useful information that you can then help me with?

I have lots of patience and thick skin.


Thx for reading this

[ChicagoGranny]

Stay in this thread. It makes it easier for the members to see your history and follow what you have tried.

Let's start with this. What is the exact model machine and mask you have? Tell us the newest/lowest-hours machine.

[Bigcatdaddy]

Wow, thx CicagoGranny.

Yes, start with basics seems a good idea.

I’ve just realized my wife has moved these all to attic, garage, or basement. After 30 min, I’ve found my second machine. A ResMed VPAP Auto 25. And a ResMed AirFit P10 with it—was some nasal pillow device. FWIW—I remember rolling in bed and hearing a crash. The machine was on floor and humidifier water inside machine. Never ran right. So I sent in for repair—came back working—but never worked again like before—so I put it in the circular file.

This will take a day or two. But I will post back with the info requested on last machine/mask.

[ozij]

I am not asking y’all to help me right here in this thread—and I see you always tell newbs to read the old posts.

We rarely do that when a person needs handholding --

If you can find your most recent titration study -- hide the personal data and upload it on an image sharing site.
Forum attachment quota is usually full, ,don't try attaching.
People will help you with the upload should you need help with that.

My issue—panic, claustrophobia falling asleep, and if I do fall asleep—waking up in 1-2 hrs in panic and the Sahara desert in my mouth.

The Sahara Desert in your mouth comes from air blowing into your mouth and out into the room. Blowing air is very effective at drying out things - mouths included. Very unpleasant.
We can also help you with the panic an claustrophobia.
Unlike some sleep techs and some doctors, we've been there, done that, and lived to tell the tale....

[Miss Emerita]

A few thoughts about the panicky feelings.

* Ease into trying CPAP again. Set the machine up outside your bedroom during the day or evening, mask up, and use the machine while you watch TV or read or do something else sedentary and diverting. Without any particular effort on your part, this will help you get used to the new sensations and avoid those panicky feelings. Don't worry about trying to use the machine at night for at least a week or so.

* I'd recommend having a minimum pressure of 6 or 7. Less than that can make a lot of people feel air-starved -- not exactly what you want when you're trying to avoid panic!

* Before you try the machine at night again, ask your doctor for some prescription medication to help you sleep (Lunestra, Ambien, whatever). You wouldn't be taking the medication for a long period of time; it'd just be for helping you ease into successful CPAP therapy.

A quick question related to your mouth breathing: during the day, do you breathe through your mouth or through your nose?

[Bigcatdaddy]

OK, I am now one step closer to success! after 45 minutes I have found the last machine I was prescribed.

Let's start with this. What is the exact model machine and mask you have? Tell us the newest/lowest-hours machine.

It is a ResMed Aircurve 10. And right below that brand name is a box with the letters VAUTO in it. I can’t yet find that mask but I found paperwork—it’s a Phillips DreamWeaver full face. In reality it’s a box over the mouth but from there up nothing over your face—but your nostrils sandwich down into the top of the mouthbox over some openings for them too.

My “logic used in picking this mask, (the techs just gave me a catalog and told me to pick what I like):
—it was so comfortable to have my face uncovered so I really had less anxiety wearing it.
—the hose connector was up on top of head—air flows down the face straps to mouthbox. In my mind—I can now roll around at night with less chance of pulling base unit to floor
—the lower face straps have a magnetic clip which seemed somehow more comfortable than other masks.
(This was about the 7th mask I had tried over the years). It seemed to bother me the least when I was awake.

[Bigcatdaddy]

If you can find your most recent titration study -- hide the personal data and upload it on an image sharing site.
Forum attachment quota is usually full, ,don't try attaching.
People will help you with the upload should you need help with that.

Ok, thanks it makes sense—we’re going need data? This sounds like I need to call the location of the study—the sleep doc’s office and ask for a copy of my sleep study data? And titration data?

I can get on that in the morning.

[Bigcatdaddy]

The Sahara Desert in your mouth comes from air blowing into your mouth and out into the room. Blowing air is very effective at drying out things - mouths included. Very unpleasant.
We can also help you with the panic an claustrophobia.
Unlike some sleep techs and some doctors, we've been there, done that, and lived to tell the tale....

Yes, it started low pressure and would ramp up. At low pressure, no leaks and almost comfortable breathing….but yes, sound like a jet engine when I would awake with tongue stuck to roof of dry mouth (a dry like I’ve never experienced before), my airway blocked until I could move my tongue. Sheer panic.
I then drove 100 mile round trip to respiratory office—asked for a demo on the head straps, and to fit appropriate size mouth box. They said I was the only patient they had with this model-so didn’t know how to size. They ordered me a box from Phillips with 4 mouthbox pieces in it from XS— L. I was told to try em all and use the one that leaked the least. It was then I realized this is the blind leading the blind. When I pushed the issue of needing technical support—I was approved by insurance to drive an additional 120 miles to large city—at a real apnea store. These folks knew sizing and straps and adjustments. The problem now became the time, mileage, paperwork approval hassle—yup, it went in the circular file again!

I am not trying to pick on or downgrade technicians with these statements I’m making. the real issue is that the insurance company picked up any bid from any respiratory center. They just likely had little experience with output apnea treatment.

I like the idea of just using low pressure while wearing during the day.
I do use a little ambien

[zonker]

If you can find your most recent titration study -- hide the personal data and upload it on an image sharing site.
Forum attachment quota is usually full, ,don't try attaching.
People will help you with the upload should you need help with that.

Ok, thanks it makes sense—we’re going need data?

yup. sleep apnea is very individualized. i don't have the same apnea you do. and the other way around. so what the forum will suggest to you depends on what data you can provide.

good luck!

[loggerhead12]

It is a ResMed Aircurve 10. And right below that brand name is a box with the letters VAUTO in it.

Good news. That's the best machine money can buy for regular, garden-variety sleep apnea. Unless you have other issues, that's a fantastic start.

[Bigcatdaddy]

Okay my studies have been located from 2017 at the sleep center. I have been told I should have them in my hands somewhere between 2 and 4 weeks. Sending medical release today.


So I need to go and learn about this image site for getting my data on here. What do you mean exactly by uploading my studies?

I will spend the next 2 weeks reading some of the instructional data already posted here for newbies on how to do this.

Thx for the help

[loggerhead12]

So I need to go and learn about this image site for getting my data on here. What do you mean exactly by uploading my studies?

That's just for taking screenshots from your computer and sharing them here on the forum. Your screenshots need to live somewhere on the internet so you can share them here. A lot of people use https://imgur.com/.

You'll need to download OSCAR and install it on your computer -- that's in the sticky at the top of the forum. OSCAR is free software that translates data from your CPAP machine via the removable SD card into usable graphs that people here can use to help you optimize your therapy. Once OSCAR is installed, you take the SD card out of your CPAP daily, put it into a card reader on your computer, import the data into OSCAR, then put the SD card back into your CPAP (that's an important step). The newbie sticky also tells you how to organize your OSCAR layout efficiently so people can help you.

SD Card reader (or similar) - https://www.amazon.com/Anker-Portable-R ... 112&sr=8-5

[Bigcatdaddy]

Thank you loggerhead.

In the interest of saving time over the next 2 weeks while I wait on my data,

Should I be doing anything to my machine that has been sitting for nearly 6 years or is it as simple as turning it on and expecting it to work as before? does it have an internal battery so the prior settings all in there?

Could you all direct me to an online trustable source for purchasing CPAP supplies? Need to buy a mask.

[loggerhead12]

Should I be doing anything to my machine that has been sitting for nearly 6 years or is it as simple as turning it on and expecting it to work as before? does it have an internal battery so the prior settings all in there?

I have . . . not tried that before.

You can get into the clinical settings and check like this:

https://www.youtube.com/watch?v=voO1f1zRo-w

Worst case scenario (short of not working at all), it resets to the default of min 4 max 20. It would be useful to try it a few nights with an SD card in place to start establishing a baseline for data. You can import that into OSCAR and see what your results look like.

[Miss Emerita]

As others have said, great machine!

I'd suggest washing out the humidifier chamber with soap and water, plus maybe the hose. Just give the exterior a wipe to remove any dust. Put in a new filter and put in an SD card if there isn't one already there.

You could try cpap.com for a mask, though it looks like they don't carry the Dreamweaver. (They sponsor this site but have no say over content.) They have a good return policy on masks.

But as with any online mask purveyor, you'll need to upload a copy of your prescription. This is from the website:

A mask prescription must contain the following information:

Your Doctor's contact information
Your Doctor's signature
Your full name
One of the following words or phrases: CPAP Mask, CPAP Supplies, CPAP Humidifier, CPAP, Continuous Positive Airway Pressure, APAP, AutoPAP, AutoSet, Auto CPAP, Auto Adjusting CPAP, Self Adjusting CPAP, BiPAP, BiLevel, VPAP, BiPAP Auto, BiPAP ST, Synchrony ST, or VPAP ST