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Re: Am I missing something, or do I just have a crappy doctor?

Posted: Wed Apr 23, 2014 12:50 pm
by ATXFerret
Here's from last night. Looks like the APAP is trying but not really keeping up. Should I bump the minimum to 17? I got the liner, and it's doing a decent job of keeping the leaks down, but I'm having a hard time falling asleep with it for some reason. Feels kind of suffocating. Obviously it's not since I slept for 13 hours without dying, but it still makes it hard to initially get to sleep.

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Re: Am I missing something, or do I just have a crappy doctor?

Posted: Wed Apr 23, 2014 12:58 pm
by Pugsy
If you were awake a lot last night then I don't know how much faith we can put in this report but yeah...try 17 minimum.

Did you have many wake ups during the night and approx how long did it take you to get to sleep.
Looks like the machine didn't want to do anything until almost 2 AM...did it take you an hour to get to sleep?

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Wed Apr 23, 2014 2:07 pm
by ATXFerret
I think i fell asleep pretty quick last night. Probably within 20 minutes. The night before was a lot harder, which is probably why I slept so long last night.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Wed Apr 23, 2014 6:07 pm
by Pugsy
Okay...if you didn't wake up much last night and fell asleep fairly quickly...keep one eye on those centrals (clear airway apnea events)...let's see if they increase in numbers and we can't blame it on being awake/semi awake.
They could also be post arousal centrals due to the OAs which are also showing up around same time frame. Hopefully if we can get the OAs reduced...the CAs will reduce along with them.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Fri Apr 25, 2014 1:48 pm
by ATXFerret
Well, here's last night. I think I really need an auto bipap.

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Re: Am I missing something, or do I just have a crappy doctor?

Posted: Fri Apr 25, 2014 7:36 pm
by Pugsy
Well.... you might get things under control with minimum of 18 or 19... stress the "might"
But yes, I agree with you and said it right from the beginning...you need a BiPap Auto...it will be a lot more comfortable and the machine can go a little higher which it looks like you are going to need at least part of the night.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Fri Apr 25, 2014 9:18 pm
by ATXFerret
I'll leave it as is for the remainder of the trial, which is until the 1st. Then I'll send the data to the doctor, set an appointment, and go tell him what I think I need. Seems a silly way to do things, but I guess that's medicine nowadays.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Fri Apr 25, 2014 9:34 pm
by chunkyfrog
The one good thing about when the patient knows more than the doctor--somebody knows!

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Fri Apr 25, 2014 9:39 pm
by ATXFerret
I still wonder if there isn't something else he could do to get the pressure down. I guess we'll cross that bridge at the appointment.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Fri Apr 25, 2014 9:40 pm
by ATXFerret
I thank you all VERY much for you help so far, and if anyone has any better/different ideas on my next course of action, I'd gladly take them in to consideration.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Fri May 09, 2014 9:02 pm
by ATXFerret
Well, this is a bit unreal. Got a phone call today from my "sleep doctor." Their directions are to set my CPAP to a setting of 17. Which is exactly back where I started, when I first called them to say that my apneas were still averaging over 20 per hour on some nights. Back in February, they had me pay for another sleep study, after which they said I should lower my setting to 15, which made things worse. Then when I wouldn't pay for a second sleep study within a month, they had me borrow an auto-PAP from the machine company, after which they have apparently decided that my pressure should be at...17. That's what this doctor got out of the information within this post.

What an expensive mistake this doctor has been. Time to go elsewhere and start over.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Sun May 11, 2014 9:39 am
by archangle
The doctor may not be wrong. Another sleep study, perhaps with bilevel testing, may be the "right" answer.

However, you may want to do some more tinkering on your own, even with the manual Elite CPAP. Some thoughts:

1) Have you experimented with EPR? Sometimes it helps, sometimes it makes it worse. Sometimes it doesn't make sense, but you can find the best setting for you.

2) Some of us subconsciously tense up our face into the mask when fitting it to stop the leaks. When you're fitting the mask, make a conscious effort to relax and make the mask leak. Then adjust the mask to fix those.

3) Zoom in on the airflow waveform and see what your apneas look like, especially how long they are and how completely you stop breathing. Short apneas are not nearly as harmful as long ones. It's especially important to look at the centrals. Sometimes the machine will flag centrals that aren't all that "real" in terms of airflow.

At this point in time, what are you unhappy about in terms of your therapy? Poor sleep, tired feelings, high AHI, leaks, etc.?

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Mon May 12, 2014 6:12 pm
by ATXFerret
Poor sleep, constantly tired.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Mon May 12, 2014 6:59 pm
by musculus
check your insurance policy and push for a biPAP.
be patient with your doctor and treatment
ATXFerret wrote:Poor sleep, constantly tired.

Re: Am I missing something, or do I just have a crappy doctor?

Posted: Wed May 21, 2014 4:46 pm
by ATXFerret
New sleep doctor might actually be effective, but it's going to take another sleep study, this one to justify an auto-bipap. More money. What is particularly ridiculous is that, in the other three sleep studies, with me having "excessively severe sleep apnea", according to the new sleep doc, no one tried bipap settings. So therefore, I have to pay for yet another sleep study, and go through another night of being wired up. She did mention that the settings that the last doctor was trying were absolute bullshit (not her words). The setting of 15 that he wanted me to use was based upon 20 minutes of non REM sleep. So, basically, he had no idea what he was doing as a sleep doctor.