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Waking up from apneas with Cpap
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ScrewtapeJenkins Offline

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Machine: PR System One Remstar Auto A-Flex
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Post: #1
Question Waking up from apneas with Cpap
Hey, all. I'm a newbie to the Cpap world. Inherited an old (very old - maybe 6-7 years old) machine from my dad. Got a sleep study in January but due to various issues have only been using the machine for like a month.

I was told in my sleep study that I have mild sleep apnea, which I think is true (or at least used to be true) most of the time. However, what drove me to have the sleep study is about once or twice a month I have a really bad night. On the bad nights I'll wake up up to 10 times gasping for air and I'll feel like I got hit by a train the next day.

Well, since I've been using my Cpap, I've had two "bad" nights, one a couple of weeks ago and one last night. I woke up gasping for air with my mask on and running at my max.

I've heard people say that it can take a month or more for the effects of Cpap to kick in, especially if you have mild sleep apnea. But if I'm having events so severe that they're waking me up, isn't that a pretty good indication my pressure is too low?

I don't have insurance and can't afford to run back and forth to a specialist a half dozen times. I was considering adjusting my pressure up ever so slightly (I found an article online teaching me how to do it - I think it was written by a forum member here). Am I being premature? Is it possible that I could have events so severe they wake me up even on the correct pressure?

(FYI, my machine is so old, it has no auto-titration, no software, and doesn't keep data that I can see.)
07-28-2013 10:30 PM
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Paptillian Offline

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Machine: S9 AutoSet
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Post: #2
RE: Waking up from apneas with Cpap
Hi, welcome to the forum. I haven't heard of anyone saying that they get severe events like that while on CPAP. It doesn't sound right.

Did you get a titration study done? What was the prescribed pressure?

Another possibility is that the machine is getting old and not providing a stable pressure.

Does the machine give you any indication of mask leak, or how well your mask is sealing?
(This post was last modified: 07-29-2013 12:24 AM by Paptillian.)
07-29-2013 12:23 AM
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Mark Risley Offline

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Post: #3
RE: Waking up from apneas with Cpap
The above comment is right on the mark. Floow that advice!
07-29-2013 05:44 AM
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ScrewtapeJenkins Offline

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Machine: PR System One Remstar Auto A-Flex
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Post: #4
RE: Waking up from apneas with Cpap
(07-29-2013 12:23 AM)Paptillian Wrote:  Hi, welcome to the forum. I haven't heard of anyone saying that they get severe events like that while on CPAP. It doesn't sound right.

Did you get a titration study done? What was the prescribed pressure?

Another possibility is that the machine is getting old and not providing a stable pressure.

Does the machine give you any indication of mask leak, or how well your mask is sealing?

I had a sleep study, and I was told very little about my results. That's a long story; I had no insurance so I went with the cheapest option in town and I got what I paid for. I only saw a cardiologist once, got a sleep study,and was basically pushed out the door with no information. All I was told was that my sleep apnea was mild. Then it took them forever to process my payment. They knew I had a machine already (I brought it to my sleep study) and they wouldn't tell me what my pressure should be, they would only tell the facility where I bought my mask. The cardiologist who referred me looked at me for like five minutes and I haven't seen or heard from him since. I envy all those folks whose doctors follow up and look out for them. My doctors could give a crap since there's not much chance of them making any more money off me.

My machine says I start with a pressure of 4 and then ramp up to 13. Last night I increased it to 13.4 and I didn't have any such events once it got to 13.4 (though I remember one or two when it was ramping). I feel a little better today than I have over the past few days. My mask gives me no data about leakage that I can see, but again, I was told absolutely nothing about my machine except how to clean it and how to turn it on. I get the feeling sleep medicine is all about the return customer and since I wasn't going to be one, none of the people involved in my care, from the cardiologist down to the technicians where I got my machine, seemed very interested.

I suspect I got shoddy results from my sleep study, and that I wasn't really taken seriously because I don't have insurance. But I don't have the money to see the specialist again and I absolutely don't have the money to get a sleep study redone. I've felt slightly better since I've been on cpap but not by much. Sometimes I can't tell if it's doing anything. I've heard it's normal for a person with mild apnea to not feel like cpap is helping at first, but the waking up makes me feel like something must be wrong.
07-29-2013 07:33 AM
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Paptillian Offline

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Posts: 474
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Machine: S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: H5i
CPAP Pressure: 4 - 10, EPR x2
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Pennsylvania, USA

Post: #5
RE: Waking up from apneas with Cpap
If you are in the U.S., my understanding is that you are entitled to your sleep study results and a copy of your prescription. The sleep study is part of your medical record and protected by HIPAA.

http://www.hhs.gov/ocr/privacy/hipaa/und...cords.html

They can't charge you any unreasonable fees for giving you the records, either. HIPAA allows only "reasonable" costs for copying/mailing the records. If they come back and say "oh, there's a $20 archive fee" or some such thing you should call it on the spot.
07-29-2013 10:11 AM
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Shastzi Offline

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Post: #6
RE: Waking up from apneas with Cpap
Hi S.T. Jenkins.

I had to do pretty much the same thing since I cant afford insurance.
I do have a Primary physician I can work with though.

Good news is: You can get yourself out of the current mess and hopefully, into a better situation. There is no rocket science involved.

Bad news is: You are going to have to scrimp and save up to buy the minimal equipment required to do the job with
since your Dr's aren't going to help you out here and they won't monitor you. YOU will be monitoring yourself.
This is not so bad since diabetics do their own monitoring as well.

First thing I did when I suspected I was in trouble was buy a wrist oximeter.
I used it everynight and kept a log of O2 desaturations vs time. With the free software around this is fairly easy these days.

This will give you a baseline set of data graphs you can keep in a folder so you'll know how well you're doing.

after a few months of adjusting the CPAP pressure to get me in the ball park I eventually saved up enough for a
Resmed S9 Autoset and SleepyHead software. With some minimal tweeking and this equipment I was able to get in a stable condition by myself. If anything adverse happens at this point I can always then go in to see my primary physician for additional help.

The bottom line is that the S9 Autoset and SleepyHead software runs a partial sleep study on you every night and adjusts pressure on the fly as needed. No human can do this as well. (too onerous a job)

This is what worked for me, but human physiology being as variable as it is, everyone will get different results.

Cheers and Good luck.

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
07-29-2013 10:32 AM
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ScrewtapeJenkins Offline

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Machine: PR System One Remstar Auto A-Flex
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Post: #7
RE: Waking up from apneas with Cpap
(07-29-2013 10:11 AM)Paptillian Wrote:  If you are in the U.S., my understanding is that you are entitled to your sleep study results and a copy of your prescription. The sleep study is part of your medical record and protected by HIPAA.

They can't charge you any unreasonable fees for giving you the records, either. HIPAA allows only "reasonable" costs for copying/mailing the records. If they come back and say "oh, there's a $20 archive fee" or some such thing you should call it on the spot.

This is a good idea. I'm definitely going to do this. Thank you.
07-29-2013 10:42 AM
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ScrewtapeJenkins Offline

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Posts: 22
Joined: Jul 2013

Machine: PR System One Remstar Auto A-Flex
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: HumidAire 3i
CPAP Pressure: 10-20
CPAP Software: EncoreBasic

Other Comments:

Sex: Male
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Post: #8
RE: Waking up from apneas with Cpap
(07-29-2013 10:32 AM)Shastzi Wrote:  Hi S.T. Jenkins.

I had to do pretty much the same thing since I cant afford insurance.
I do have a Primary physician I can work with though.

Good news is: You can get yourself out of the current mess and hopefully, into a better situation. There is no rocket science involved.

Bad news is: You are going to have to scrimp and save up to buy the minimal equipment required to do the job with
since your Dr's aren't going to help you out here and they won't monitor you. YOU will be monitoring yourself.
This is not so bad since diabetics do their own monitoring as well.

First thing I did when I suspected I was in trouble was buy a wrist oximeter.
I used it everynight and kept a log of O2 desaturations vs time. With the free software around this is fairly easy these days.

This will give you a baseline set of data graphs you can keep in a folder so you'll know how well you're doing.

after a few months of adjusting the CPAP pressure to get me in the ball park I eventually saved up enough for a
Resmed S9 Autoset and SleepyHead software. With some minimal tweeking and this equipment I was able to get in a stable condition by myself. If anything adverse happens at this point I can always then go in to see my primary physician for additional help.

The bottom line is that the S9 Autoset and SleepyHead software runs a partial sleep study on you every night and adjusts pressure on the fly as needed. No human can do this as well. (too onerous a job)

This is what worked for me, but human physiology being as variable as it is, everyone will get different results.

Cheers and Good luck.

So, did you not have a sleep study at all? I had a sleep study and I think I'm in the ballpark (upping my pressure to 13.4 seemed to do wonders for me last night). Could I skip the wrist oximeter (which amazon lists at $250) and just go with the S9 Autoset? And does the SleepyHead software come with the S9 or is that a separate purchase?

I think I actually saw the S9 when I went to pick up my new mask and have my pressure set. It was the only auto-titrating cpap they had in the store. The price was similar. I'd pretty much made up my mind even before reading your post that I was going to have to find a way to save up $700 to get an auto-titrating machine. One of my early plans before I used a year saving up the $2000 to have my sleep study done was to just have my dad (who had a prescription for a cpap) go in and buy an auto-titrating machine for me, and skip the sleep study and just do that. I decided to do the thing honest because I thought a doctor would give me more precise help than a machine. I'm starting to think I made exactly the wrong decision.
07-29-2013 10:48 AM
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oak Offline

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Post: #9
RE: Waking up from apneas with Cpap
Screwtape, you dont say how old your machine is or what kind of mask you have. Getting your report would hopefully be very very helpful to people on these forums so they can help you. Also, if you can get your prescription, you could purchase an S9 autoset or PRS system one, either from a local supplier or online supplier. (make sure you get a data capable machine) The sleepyhead software is free here. You also can purchase masks the same way, or even buy mask parts online without a prescription and assemble the mask yourself. You dont say if the mask is working for you. If it was me I would work on getting a good, data capable CPAP machine and mask that works for me before worrying about the oximeter. Work with knowledgeable people on the forums to help you get the pressure set correctly since you cant afford to go to the doctor. They cant give you medical advice but they can tell you what they would do if they were you. This could take a few weeks because you should leave your machine at a given pressure for at least a week or more before messing with it. There are also people on these forums and the American Sleep Apnea association that work with people to get low cost or free machines (although they may not be fully data capable machines). I have even heard of DME vendors (shock!) who will sell or donate used machines. Also, Paptillan and Mark have given you good advice. Also--if those "gasping for air" events dont start to come under control with CPAP, i think you should see a pulmonologist who is also a certified sleep doc. You dont say where you live, but in the US you should be eligible for very very low cost insurance through the affordable health care act soon. You can sign up starting in October. In some states you would be eligible for Medicaid/Medical Assistance right now if your income is low enough. At any rate, --Good luck-stick with it and hopefully you will feel better soon! Regards, Oak
07-29-2013 11:45 AM
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ScrewtapeJenkins Offline

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Machine: PR System One Remstar Auto A-Flex
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Post: #10
RE: Waking up from apneas with Cpap
My best guess is my machine is between 5-10 years old. When I got my mask, the technician checked the machine and said it was functioning properly. I use a full face mask, but not the kind that covers your whole face, just your nose and mouth. It's a Mirage Quattro. I know I get leaks because sometimes I hear it or feel it and adjust it.

I don't know what you mean by the question of whether my mask works for me. I have no trouble getting to sleep with it on. Whether it leaks a lot while I'm asleep, I have no idea. I would assume it does leak at least a little, but would that justify the severe events?

I am correct, though, that a person on cpap shouldn't experience events of waking up gasping for air? Even if I had a mask that was leaking a little bit, that shouldn't happen, right?
07-29-2013 12:39 PM
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