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A silly question about AHI numbers
#1
I put my mask on soon after going to bed, but I often am not able to sleep for an hour or more, sometimes 2-3 hours. I'm thinking that makes my AHI skewed, as while I'm awake, of course I have no apneas. I can still read the entire result on Sleepyhead, but when I send off my card to be "read" at the sleep clinic (I doubt they really care) I wonder if it gives a false result as to the proper settings for my machine?

I'm still trying to get switched from cpap to apap, although it is very discouraging to have to defend myself to the sleep clinic people. I've been told I'm "self-diagnosing day by day" and that is clearly a BAD thing to them, and that they just use "under 5" as a goal but many people are very happy to have AHI numbers of 10 or 15, and generally make me feel like I'm doing something wrong to be using any kind of software to track my sleep. According to them, using the RedMed software is "probably illegal" and the Sleepyhead software WHICH THEY HAD NEVER EVEN HEARD OF ALTHOUGH THEY CLAIM 15+ YEARS IN THE BUSINESS is probably inaccurate. I find it incredible that the sleep clinic would not know every single thing that is going on in the apnea world, like Sleepyhead, for example. If I, a brand-newly diagnosed apnea patient can find these resources on my own, why can't they keep up?

As you can tell, I am discouraged and frustrated! HOWEVER I am still better off than I was before getting the cpap. I just wish that I could do well enough to be truly alert all day and not need a nap in the afternoon.

Kathi D.
Kathi D.
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#2
(05-24-2014, 01:20 PM)kderevan Wrote: I put my mask on soon after going to bed, but I often am not able to sleep for an hour or more, sometimes 2-3 hours. I'm thinking that makes my AHI skewed,

Assuming you're still breathing while awake, it might make it appear lower, since you have more hours and less apneas, if they don't look at the data too closely. If your machine collects enough data, they should be able to tell the difference between awake and asleep (more or less)

kderevan Wrote:I'm still trying to get switched from cpap to apap, although it is very discouraging to have to defend myself to the sleep clinic people.

Tell your doc you want an auto machine and to write a prescription for it. I can't imagine why he could possibly have an objection to it. If he won't do it, you can always find another doc.

kderevan Wrote:I find it incredible that the sleep clinic would not know every single thing that is going on in the apnea world, like Sleepyhead, for example. If I, a brand-newly diagnosed apnea patient can find these resources on my own, why can't they keep up?

You're stepping on their turf and making them less necessary. Truth be told, they have little reason to exist if they're not going to make things easy for you. There are any number of places on the internet that are happy to help. Also, the DME suppliers typically have little/no interest in anything they don't sell.

kderevan Wrote:As you can tell, I am discouraged and frustrated! HOWEVER I am still better off than I was before getting the cpap. I just wish that I could do well enough to be truly alert all day and not need a nap in the afternoon.

Tell your doc. If he won't fix you, find different doc. You're entitled to not be tired, and just because they're happy with 5 or 10 or whatever doesn't mean you need to be satisfied with it.

At the end of the day, doctors are just highly skilled mechanics that happen to work on people. If you're not happy with yours, switch.



Terry


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#3
(05-24-2014, 01:20 PM)kderevan Wrote: I put my mask on soon after going to bed, but I often am not able to sleep for an hour or more, sometimes 2-3 hours. I'm thinking that makes my AHI skewed, as while I'm awake, of course I have no apneas. I can still read the entire result on Sleepyhead, but when I send off my card to be "read" at the sleep clinic (I doubt they really care) I wonder if it gives a false result as to the proper settings for my machine?

I'm still trying to get switched from cpap to apap, although it is very discouraging to have to defend myself to the sleep clinic people. I've been told I'm "self-diagnosing day by day" and that is clearly a BAD thing to them, and that they just use "under 5" as a goal but many people are very happy to have AHI numbers of 10 or 15, and generally make me feel like I'm doing something wrong to be using any kind of software to track my sleep. According to them, using the RedMed software is "probably illegal" and the Sleepyhead software WHICH THEY HAD NEVER EVEN HEARD OF ALTHOUGH THEY CLAIM 15+ YEARS IN THE BUSINESS is probably inaccurate. I find it incredible that the sleep clinic would not know every single thing that is going on in the apnea world, like Sleepyhead, for example. If I, a brand-newly diagnosed apnea patient can find these resources on my own, why can't they keep up?

As you can tell, I am discouraged and frustrated! HOWEVER I am still better off than I was before getting the cpap. I just wish that I could do well enough to be truly alert all day and not need a nap in the afternoon.

Kathi D.
Hi Kathi,

How come you can't go to sleep? Man, when I put on my mask my body says "oh boy! I get to go to slee........" and that's all I remember for a good long time.

So I'm wondering if you're as comfortable as you could be? Mask comfy? Pressure ok? Miserable cats leaving you alone?

Now, as to your DME crowd, I would simply ask them what their overall drop out rate is with their patients that know no evil, speak no evil, hear no evil... I don't have the stats to prove it, but I would be willing to bet the last hair on Herb's head that the compliance rate of the folks on this board beat the snot out of theirs. That's not because we're so cool, but because when people care enough to take ownership of their situation, they will always do better than those that don't.

Are you self-diagnosing? Damn straight you are! You care enough about your health to want to be sure you are doing everything you can to insure your success. If they cannot understand that, then maybe you need to find a doc that can.

Is an ahi of 5 a bad thing? Don't know.... for me maybe, but for someone else it might be a blessing. Everyone is different, in spite of what the DME's might think.

Is the Rescan software "illegal?" Well, until the Resmed police arrive I would not worry about that. It is software that was produced just for the sleep docs and dme's, and is not supposed to be used by mere mortal patients. But the Sleepyhead software has no such issues, and if they aren't familiar with it, which they probably are not, it's because most of the DME's and sleep docs I've heard of aren't all that "into" state of the art internet support groups.

In the end, just know that you are doing great. You're getting treatment you need and you're intelligent enough not to trust some sales organization who want to feel like you're their patient, rather than their client.

Keep up the good work....... We've got your back.
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#4
And some of the folks at some sleep clinics are very unskilled mechanics.

As you start knowing much more about how well your apnea is being treated than they ever will, those are also the ones likeliest to become defensive about their own professional inadequacies, and likeliest to try to attack you for looking after your _own_ health.

The folks on this board, on the other hand, are also in your shoes (or mask or nasal pillows, as the case may be Smile ), and will do their best to help you.
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#5
KathiD,

I'm so sorry you feel discourage and frustrated because you are smart, intelligent, working through a very new and difficult process - and doing all you can to improve your health. Please don't let the DMEs and doctors "beat you down". There are only a handful of those guys and many more of us hose heads on Apnea Board that are here to support you and help you. Ditto what tcarmen, retired_guy and APAAW said. And keep us posted, please.

Remember… you are not doing anything wrong! You are doing everything right.

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#6
What APAAW says! In simple terms, he nailed it! Sleep labs lose money when someone uses an APAP and finds that his actual median for CPAP is much higher than what was titrated. That is where I stand. I started off at 10, but with APAP it is now 11.6. After being on S8 Elite CPAP for 4.5 years and actually feeling great, with my S9 AutoSet on auto, I feel awesome! My 37 day median for AHI's is .01, now that is better than it has ever been on straight CPAP. When I started CPAP, I would take the card in to be read by the DME, and asked them to give me a statistics printout of all available data. This was before I acquired my own software. All they ever gave me was the compliance data, saying the other data was only for the doctors, not the patient. With the assistance of this forum, I was able to look at all the data, and discussed it with my GP, and had his blessing to make any changes I felt needed to be made. I still get my supplies from my DME, and have ordered some they "never heard of", and insisted that those were what I wanted, and they now stock them, and Medicare pays their appropriate amount for them, leaving me a 20% co-pay. Much cheaper to me than paying out of pocket online.
OK, enough rambling on about the dead horse. Absolutely become your own best advocate in this issue! Hands down, it's the best thing you can do.
I-love-CPAP Rycharde
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#7
Just wanted to add my note of support here. For me, an AHI of '10' is wonderful, but that's just because of how bad I am if not on my machine. Everyone is different, so what works for me, you might hate.

A lot of great answers above me - I too was one of those that just used my machine for years without even thinking about what it does, or how it works. Hang tough, we're all here with you!
*I* am not a DOCTOR or any type of Health Care Professional.  My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
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#8
I would be LOST without all the good advice and support here. Thank you all!
Kathi D.
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#9
(05-24-2014, 03:18 PM)APAAW Wrote: And some of the folks at some sleep clinics are very unskilled mechanics.

As you start knowing much more about how well your apnea is being treated than they ever will, those are also the ones likeliest to become defensive about their own professional inadequacies, and likeliest to try to attack you for looking after your _own_ health.

The folks on this board, on the other hand, are also in your shoes (or mask or nasal pillows, as the case may be Smile ), and will do their best to help you.

You have the "go on the defensive" part right. I must have asked the wrong question because the answer was, "I'll be the doctor, and you be the patient." What brought that on was a requested pressure adjustment on my Respironics 600 Bi-Pap. When I first got it the thing would hurt my eardrums every time it cycled. I took it in was told I would get used to it. I finally learned how to see the settings, which were 19.0 / 21.0. From a source near and dear to my cursor at this moment, I learned how to adjust adjust and configure it myself, set the pressures
lower (7~8) had a good sleep. In the last 12 months I tweaked and got up to 12~14, and find it very comfortable. Don't give up!
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#10
(12-21-2014, 04:30 PM)vcottom Wrote: You have the "go on the defensive" part right. I must have asked the wrong question because the answer was, "I'll be the doctor, and you be the patient."

WOW!!! I am afraid my response would have been, "You practice being the doctor and find someone else stupid enough to be your patient". Thumbs-down-1 Sad
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