questions about lowering AHI

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Beth T.
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questions about lowering AHI

Post by Beth T. » Wed Mar 28, 2012 7:30 am

I started CPAP therapy on 2/2/12. I have an S9 autoset and my inital pressures were set at 5 and 8 by the titration study. My sleep clinic was great during the studies and setting up and explaining the machine - horrible at supprot and follow up that they said they would do. RT told me he would call after 4 days to see how it was going and then again at 2 weeks. Neither happened. I emailed him after a few days and he called and answered a couple of questions. I told him that I was not seeing an AHI on my machine. He said if I wasn't it was because it was 0. Of course that was not true. I figured out how to turn on the sleep report and was able to monitor it. Always under 5 but often in the 4s. Then I went back on 3/6 and saw the doctor. I told him that my 95th percentile was always at 8 so he agreed that the pressure should be raised and said he would raise it to 6 and 9. I also told him I wanted to try a full face mask as I was having some congestion problems and mouth breathing even with a chin strap. They measured me and said they would have to order one and would contact me when it came in. 3 weeks and 2 emails later and still haven't heard anything. Checked the next morning and my 95th percentile was still 8. So I figured out with the help of this board and the apnea board how to get into the clinician's settings. Sure enough the pressure had not been changed. I changed it to 6 and 9. AHI still hovering in the high 3s and 4s. Better certainly than what it was before CPAP but I want to get the most bang for my buck! However I kept it that way for 20 days to get used to it. I then changed it to 10 leaving the lower range at 6. Ramp is only 10 minutes but it is an easy way to get started every night. So for two nights I have had it at 10. THe 95th percentile pressure on both nights is 10. AHI of 2.5 and 3.1. Better certainly but - really - I want it to get as low as I can. However I will leave it at this to get used to it and see what happens. I want to post some of my data but am unsure of how to do it. I have both Sleepyhead and the Res Scan software.
I am so frustrated with thie after care and support that I am receiving. I did talk to the doctor about it when I saw him as I was having some problems with his billing person not returning calls too and he seemed really concerned and then - DIDN'T CHANGE THE PRESSURE WHEN HE SAID HE WOULD. I see him again on 5/8. Prepared to listen to crap about chaniging my own pressure and prepared to reply to that crap as well. Aetna has me paying for the machine for 10 months after which I own it - wonder if I can change doctors during that time...
So I have rambled but my questions are - how can I post some data? SHould I raise the lower pressure as well so it is in a 3 point range? How long should I wait before I raise it again if my 95th percentile keeps reaching the upper limits? Thoughts on staying with this practice or changing. They blah blah when you are on hold about how important you are to them and how they know the most important thing is their patient's satisfaction and the best compliment is a referral - and yet they really do not offer good support when that is what is most crucial for success.

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Pugsy
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Re: questions about lowering AHI

Post by Pugsy » Wed Mar 28, 2012 7:42 am

Before trying to zap the AHI lower...What is the AHI breakdown? How much in each event category?
Central (Clear Airway) Index....Obstructive Apnea Index and Hyponea Index?
AHI of 2 to 3 is acceptable and depending on the breakdown of the categories there likely is no urgent need to change anything.



I use screen shots to post data. Here is how I do it.

Open the image to full size so it is easily read.
I use Vista snipping tool to create a screen shot and crop the image at the same time.
Prt/scr key will also take a screen shot if using XP. If laptop is used sometimes the Fn key has to be pushed at the same time as the prt/scr key
I think windows 7 Home Premium has the snipping tool, Basic may not.
Once the screen shot is created save it in jpg format.
Upload the image to a host site. I use Photobucket it is free, there are others.
Once the image is uploaded then copy the ENTIRE IMG address. Be sure to include the opening and closing IMG in brackets. Paste that copied address into a post here.
Use the preview button. If you can't see the image try again because if you can't see it we can't.

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LSAT
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Re: questions about lowering AHI

Post by LSAT » Wed Mar 28, 2012 8:16 am

Beth...Why do you keep going back to this doctor...You don't need him. You are doing fine on your own.

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robysue
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Re: questions about lowering AHI

Post by robysue » Wed Mar 28, 2012 8:25 am

Beth T. wrote:I started CPAP therapy on 2/2/12. I have an S9 autoset and my inital pressures were set at 5 and 8 by the titration study. ...
Then I went back on 3/6 and saw the doctor. I told him that my 95th percentile was always at 8 so he agreed that the pressure should be raised and said he would raise it to 6 and 9. ...
So I figured out with the help of this board and the apnea board how to get into the clinician's settings. Sure enough the pressure had not been changed. I changed it to 6 and 9.
Good for you for just deciding to do the authorized pressure change yourself since the DME/doc didn't manage to get it done for you.
AHI still hovering in the high 3s and 4s. Better certainly than what it was before CPAP but I want to get the most bang for my buck! ...
(After increasing max pressure to 10cm) AHI of 2.5 and 3.1. Better certainly but - really - I want it to get as low as I can.
Keep in mind that there are things that are more important than trying to get the AHI as close to 0 as possible night after night. One of them is actually managing to get some high quality sleep with the dang hose on your nose. And 'tis far better to have a slightly higher AHI and get a sound night of sleep than it is to have a near perfect AHI after a night with little or no quality sleep. (For me, I seem to feel best when my AHI is between 1.5 and 2.5. Any higher than that, and I tend to feel the apnea. Any lower than that and it often means my insomnia was a real issue.) So once your AHI is consistently running < 5, it becomes much more important to track How do you feel? and How are you functioning rather than just the AHI.

In other words, measure "bang for your buck" in terms of how you feel on a daily basis: If you're feeling lousy, you know your PAP therapy may need tweaking. If you're feeling fine, you know your therapy is going well.

And so I ask: How are you feeling these days?

However I kept it that way for 20 days to get used to it. I then changed it to 10 leaving the lower range at 6. Ramp is only 10 minutes but it is an easy way to get started every night. So for two nights I have had it at 10. THe 95th percentile pressure on both nights is 10. AHI of 2.5 and 3.1. Better certainly but - really - I want it to get as low as I can. However I will leave it at this to get used to it and see what happens.
It is important to let your body acclimate to any changes in therapy. But usually that only takes about 4--7 days or so. So leave max Pressure at 10 for the rest of this week and then evaluate both How do you feel? data and the AHI numbers.
SHould I raise the lower pressure as well so it is in a 3 point range?
What's the breakdown of events from the machine? As in are most of the events OAs? Hs? CAs? As long as the CAI is the smallest, sure you can increase that min pressure a bit without any real concerns. I'd suggest only going up 1cm at a time and leaving it there for 4-7 days. Also watch for aerophagia. If aerophagia becomes an issue, back off on the pressure some.
How long should I wait before I raise it again if my 95th percentile keeps reaching the upper limits? Thoughts on staying with this practice or changing.
Whether you want to keep rasing the max pressure just because your 95% winds up equaling your max pressure is not a simply "Yes/No" question. The honest answer is "It depends."

It depends on: Why is the machine is increasing the pressure? Are the pressure increases in response to clusters of apneas and hypopneas? If so, then yes, you might feel better with more pressure. Is it in response to snoring? Is it in response to flow limitations? In this case, the answer to "Should I raise the max pressure?" is "maybe." More pressure may help eliminate or minimize snoring and flow limitations. But higher pressure may also trigger problems with aerophagia and/or leaks, which in turn can cause problems with getting to sleep and staying asleep. And fragmented sleep usually leaves you feeling worse, not better in the morning.

For me: I consistently hit (and stay at) my max IPAP = 8 cm for very long stretches night after night. The pressure increases are mainly because of flow limitations and because snoring increases my EPAP, which in turn increases my IPAP. I'd actually like to my max IPAP a bit (to try to reduce the flow limitations), but that would also increase my maximum EPAP. And anytime my EPAP > 6 cm, I wind up with a great deal of aerophagia and fragmented sleep. So I've learned that I feel better with current settings even though they don't minimize my snoring or my flow limitations (or even my AHI).
I also told him I wanted to try a full face mask as I was having some congestion problems and mouth breathing even with a chin strap. They measured me and said they would have to order one and would contact me when it came in. 3 weeks and 2 emails later and still haven't heard anything.
This is simply unacceptable. Contact your insurance company and find out from them whether you really have to buy all your supplies from this DME. Chances are you can shop at other DMEs as well. But masks do require that you have a copy of your prescription.
They blah blah when you are on hold about how important you are to them and how they know the most important thing is their patient's satisfaction and the best compliment is a referral - and yet they really do not offer good support when that is what is most crucial for success.
Alas, this does seem to be par for the course. And then they wonder why so many people abandon therapy so early in the game.

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Beth T.
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Re: questions about lowering AHI

Post by Beth T. » Wed Mar 28, 2012 8:50 am

thanks everyone! I am going to try to post some data later today so I can answer some of the questions. I feel good - I didn't feel that bad before starting CPAP but I am happy with how much better I feel. There were times with tiredness - that felt like I could not shake it. I don't have that at all anymore. Feeling more energaetic for sure. I probably annoy people now babbling about CPAP and telling them how much better they would feel!!
I do think Aetna has you pay for it over a period of 10 months so they can be sure you are complaint before they pay for it totally. so that is why I will go back - I have been in compliance from the start and average about 7.5-8 hours with the mask on each night. The sleep study clinic is the DME - I gather that is not ideal or usual? It seems convenient but I would welcome their support and I would like them to do what they say they are going to do. I don't drive - legally blind - so with it being close it is easy for my husband to take me to apointments and to pick up supplies. There are others in the general area though if I need to change.
I am going to leave the pressure where it is for now. Don't want any bloating, more leaks etc so I'll see how I feel and what the AHI averages at. I'll see if I can post some of my data later today. Thank you so much for your responses!

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Julie
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Re: questions about lowering AHI

Post by Julie » Wed Mar 28, 2012 11:06 am

By the way, if you still have congestion, have you tried lowering your humidifier setting, or even turning it off?

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robysue
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Re: questions about lowering AHI

Post by robysue » Wed Mar 28, 2012 2:10 pm

Beth T. wrote:t The sleep study clinic is the DME - I gather that is not ideal or usual? It seems convenient but I would welcome their support and I would like them to do what they say they are going to do.
It's not unheard of, but it's not the usual set up.
I don't drive - legally blind - so with it being close it is easy for my husband to take me to apointments and to pick up supplies. There are others in the general area though if I need to change.
You might want to give your insurance company a call. They may have a procedure for reimbursing you for supplies bought from on-line DMEs such as cpap.com, our host here. And that way you wouldn't get caught between the rock and the hard place you find yourself in right now concerning the mask problem.

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Beth T.
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Re: questions about lowering AHI

Post by Beth T. » Fri Apr 06, 2012 8:54 am

Image
Image
Hoping I did these screenshots correctly!
Here are the last 2 days of data. I did get my full face mask and as you can see from last night I fought with it for a while before taking it off and switching back to the nasal mask. The night before was nasal mask. I will continue to work with the FFM but it made me feel pretty claustrophobic. I would prefer the nasal but really have a problem with opening my mouth apparently as I have a super dry mouth several times a night. It doesn't seem to be affecting my leak rate badly however but it is unpleasant. I will tinker with different chin straps perhaps and the dreaded taping of the mouth...
I raised my pressure myself as you will read in the above posts when my doctor said he would and then didn't . I then raised it again to 7 and 10. Still bumping up against 10 most of the time but I feel pretty good and so will stick with it for a while. I go back to him on May 8 and don't want him yapping about changing my pressure incessantly.
Thanks to the people who posted - this forum and apnea board has been such a life saver...

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Spinory
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Re: questions about lowering AHI

Post by Spinory » Fri Apr 06, 2012 9:32 am

Hi Beth!

I don't think I have much to add but wanted to let you know that I had a frustrating experience with my sleep clinic too. They also had their own DME (across the hall!) and did not mention I could go to other DMEs if I wanted to; I made many calls to my insurance company when I had questions and that helped.

My sleep doc prescribed a straight pressure of 11 but I wanted the flexibility of an APAP. I also wanted a machine that had data that I could access. They told me I had "no medical reason" for getting an APAP and "why would you want to follow your own data? We do that for you"! Unbelievable! They did agree to give me a script and with that I was able to get the machine I wanted (a ResMed S9 Autoset) from secondwindcpap.com that I set the pressure range myself(9 to 13 and I've seen my data that showed I needed the 13) and I bought a Swift FX out of pocket from a DME close to me that had been very helpful when I asked a ton of questions. I wanted to have the flexibility of being able to return it if it did not work for me. I might have done the $14 mask try-out from cpaplibrary.com but I didn't know about it then. There's so much out there to learn and this forum has been incredible.

I have "washed my hands" of my doctor and cancelled the follow up appt that I had and have no plans to go back. I've only been using my machine for 3 weeks and my AHIs have been consistently under 5 and I feel much better so right now I'll just keep
it as it is.

Just know you are not alone! Good luck!

Heather

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Re: questions about lowering AHI

Post by VikingGnome » Fri Apr 06, 2012 2:17 pm

Isn't there some sort of conflict of interest when the sleep doc owns both the sleep clinic and DME? That's like a doc having his own pharmacy. The doc is more motivated than most DME's to provide the cheapest option to solve patient's problem which is not always the best for the patient. I know Medicare has a law that says doctors cannot own clinical labs because they profit by ordering more blood tests. I would NOT seek the services of a DME that is actually owned by the sleep doc that wrote my prescription. You are NOT going to get the best care and equipment under those circumstances.

So if you AHI is consistently below 5 on CPAP, why change your settings? You are at "normal" like people without CPAP. Don't let the numbers be your guide. How you feel, your level of alertness, ability to concentrate, and mood are much better measurements than a number produced by a machine. And don't take a look at your AHI in the morning and THEN decide how you feel. I think that is one reason the docs don't like use to have data capable machines.

BTW. I told my sleep doc's nurse practitioner about SleepyHead software. He had not heard of it before but was excited to learn that those stuck with Encore Pro had another option. He was quite open to me being able to monitor my own data. And we even discussed some of things I have been observing on my daily flow data. He concluded that savvy patients like me that both understand OSA and the measurements reported by software BENEFIT by being able to self-monitor. Other patients have neither the knowledge, capacity, or interest in seeing their numbers. Many he sees don't even comprehend what AHI means.

He says if I feel I need a pressure change to give him a phone call. Explain what I'm seeing and he'll fax the script over the DME for the change. I'm good with that because it is my philosophy that patients shouldn't have to change their own pressures. They should be done with an MD script to DME. Any patient that self-adjusts their pressure are releasing their sleep doc from ALL malpractice liability because they are not following the prescription provided by the doc.

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Beth T.
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Re: questions about lowering AHI

Post by Beth T. » Sat Apr 07, 2012 6:41 am

thanks VikingGnome - you bring up some realy good points. I had to smile when I saw the part about not looking at the data and then deciding how I felt that morning! I have been guilty of that for sure. I guess I just want to get my OSA as controlled as possible - so many people post about their AHI being consistently less than 1 etc. But you are right- less than 5 is what to strive for and I have that.
I hate to be clueless about the doctor/DME thing. THey simply provided the machine, masks etc. Not having experience with it I just thought it was normal. However they did give me the S9 Autoset etc which seems to be a good machine so I don't think they are trying to go with least expensive. I could change my mask all I wanted in the first month. So I am not sure I have any problem with that aspect of it although I can see where it could be a problem if they did try to cheap out. THeir lack of support is what is concerning although they have been better lately with my insistence. He did say no one else has ever asked for their sleep reports or talked about AHI etc which I find really crazy...
As far as changing the pressure - he said he would do it and then didn't so then I just did it. I don't drive so going back is a hassle - I did email them that I had done it but got no reply. So then I changed it again a few weeks later to where it is now - 7 and 10. I am stilll hitting 10 most of the time but will wiat and see how it settles in.
thanks for your thoughts - they did give me a better perspective and I am jealous that you seem to have found a good practice that will work with you! Maybe I can mold these people into that - lol

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Re: questions about lowering AHI

Post by avi123 » Sat Apr 07, 2012 8:52 am

Beth, the fact that you could email or phone call your Doctor and RT, and argue about your APAP's set-up, tells me that they are not highly reputable. None of my dozen specialists I could reach by an email or telephone. This is because they are not paid for such time, and also b/c of the face to face requirements for check-ups and examination. In this regard, MDs are not like lawyers. Also, my Sleep MD would not look at my reports from my APAP, or listen to me talking about the data. If I complain about my daytime residual sleepiness then my Doc would suggest another PSG test at a sleep clinic. If I do the test, and set up my APAP at the newly found pressures, but still have the daytime sleepiness, then my Sleep MD could say that things like that happen i.e. I could be at my optimal setting and still have residual daytime sleepiness.

Do you use a chinstrap with your nasal mask? I ask it b/c your above graphs show that the APAP pressure is hugging the max pressure line. It could mean that your optimal pressure is a bit higher, or that your leaks are interfering with the machine not being able to suppress obstructive events and causing the pressure to rise. I usually include the leak graph in the presentation. See it here and also the confinment of the pressure graph within the max and min lines:

Image

Image

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Beth T.
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Re: questions about lowering AHI

Post by Beth T. » Sat Apr 07, 2012 9:43 am

i am really not reperesenting that well - I can't reach my doctor by phone or email - I can email the RT to ask questions. Didn't argue about the pressure - just told him that they forgot to change it when they said they would and so I did it myself rather than try to go back in there - do not drive due to vision so that is a hassle when I can just do it myself. With the APAP I don't think I would have need for another sleep study so soon. Just had the first one on 1/12 and the second on 1/26.
I thought I put the leak rate chart on there as well - sorry. My leaks are very well contained, usually well below 10 on the Resmed graph. I do wear a chin strap although still have somewhat of a dry mouth - that is getting a little better. My pressure probably could stand to be raised but for now I will leave it like this until I see him again in a month. My AHI is always below 5 and usually below 3.5.
thanks
Beth

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