Feeling good <> AHI or SPO2

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
leeirvin
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Feeling good <> AHI or SPO2

Post by leeirvin » Fri Apr 24, 2015 7:24 am

I've been on CPAP therapy for almost two years to date. Frustrated with Excessive Daytime Sleepiness (EDS) I have been seeking even more assistance over those two years. I'm ADHD, so I take Vyvanse, and I also take Nuvigil for my EDS. You'd think I'd be able to paint the Sistine Chapel in about 45 minutes. However, sadly enough, no. Sit me down for 3 minutes I'm yawning excessively and give me 5-7 and I'm asleep. Even worse, put me in a meeting at work and everyone is looking at me. i know this has hurt me professionally.

I've recently switched to a Neurologist who specializes in sleep issues. According to her, I have no obvious neurological issues going on. (My wife may disagree) However, despite AHI index of around 1 and even less, she started looking into the quality of my sleep again, which drove me to here and a similar site where I have learned a lot in two weeks.

I currently have a ResMed S9 Escape Auto, which has been good, but as I have recently discovered, offers no data. After working with my DME (a nice way of putting it) I have grown frustrated and thanks to a member out here, I should soon be using a new Air Sense 10 Autoset.

In the meantime, I have learned how to change my CPAP @9 to an APAP and have slowly adjusted it upward to 10-20. I am also monitoring my SPO2 with a CMS-50E (the all inclusive LED unit on your finger) However, I am not seeing the correlation like I think I should. For instance, this morning, I woke up with a fantastic headache, tired, felt literally hungover. (BTW - I no longer drink alcohol due to my EDS, it will literally put me to sleep) My AHI events for last night were .2 over 7 hours and 15 minutes of sleep. This does not include the hour of napping in front of the TV with my wife (who's not happy I can't stay awake with her) My SPO2 was great averaging around 95%, heart rate around 59.

So I am dying to see the data that I can get from this new machine when it gets here.

I feel like I am running out of options here though. What else could be going on? Is there another specialist I should go see? I'm frustrated my DME did what so many do and stuck me with the S9 Escape Auto. Lesson learned.

Where can I go from here?

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Pugsy
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Re: Feeling good <> AHI or SPO2

Post by Pugsy » Fri Apr 24, 2015 8:09 am

1..What was your diagnosis back when you were put on cpap and how much was the diagnostic (without cpap) AHI? If you don't know the answer then you need to get a copy of your original diagnostic sleep study.

2..Do you wake often during the night for any reason?

A nice low AHI and nice normal pulse ox reports don't guarantee that all our problems are fixed...wish it were that easy.
Once you get your full data machine one of the things I would look at closely would be the flow limitation graph to see if it maybe is showing something. I doubt your AHI is going to tell you much since it is pretty much unremarkable now.

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Re: Feeling good <> AHI or SPO2

Post by robysue » Fri Apr 24, 2015 9:32 am

leeirvin wrote:I currently have a ResMed S9 Escape Auto, which has been good, but as I have recently discovered, offers no data.
The biggest problem with that S9 Escape Auto is that it records no leak data. If the leaks are really bad for a really long time on most nights, that can result in the AHI data that is recorded by your Escape Auto not accurately reflecting the true treated AHI. Hopefully the new Airsense A10 Autoset will show that your leaks are not really bad for long periods of time every night.
leeirvin wrote:I've been on CPAP therapy for almost two years to date. Frustrated with Excessive Daytime Sleepiness (EDS) I have been seeking even more assistance over those two years. I'm ADHD, so I take Vyvanse, and I also take Nuvigil for my EDS. You'd think I'd be able to paint the Sistine Chapel in about 45 minutes. However, sadly enough, no. Sit me down for 3 minutes I'm yawning excessively and give me 5-7 and I'm asleep. Even worse, put me in a meeting at work and everyone is looking at me. i know this has hurt me professionally.

I've recently switched to a Neurologist who specializes in sleep issues. According to her, I have no obvious neurological issues going on. (My wife may disagree) However, despite AHI index of around 1 and even less, she started looking into the quality of my sleep again, which drove me to here and a similar site where I have learned a lot in two weeks.
Sounds like the new neurologist has a good idea in revising the overall quality of your sleep. She might want to start with trying to make sure that your leaks are under control since your machine does not record leak data. But if she suggests another round of sleep tests, I'd recommend doing them. It's possible that there's more than one sleep disorder going on.

Since your AHI is apparently well controlled with the CPAP, I wonder if it would be possible to schedule an overnight sleep test using the CPAP, followed by the daytime MSLT test that is usually used to diagnose narcolepsy. They won't do an MSLT on a diagnostic sleep test (i.e. without CPAP) when the diagnostic sleep test shows untreated OSA. But you've been PAPing for two years and the AHI is under control, but you are still having some pretty severe daytime problems with EDS.

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leeirvin
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Re: Feeling good <> AHI or SPO2

Post by leeirvin » Fri Apr 24, 2015 11:53 am

Hey Pugsy:

Original Sleep Study:

AHI was severe at 33. Of which 31 resulted in a desaturation of less than 3%.

Obstructive Apneas: 0
Obstructive Hypopnea: 64
Central Apnea: 0
Mixed Apnea: 0

Apnea Index: 0
Obstructive Hypopnea: 33

All AHI events were in supine position. None recorded right, left or prone.

AHI during REM was 20

Respiratory Effort Related Arousals totaled 0.
Respiratory Disturbance Index: 33

Longest respiratory event lasted 29 seconds.
Average event lasted 20 seconds.

Baselilne O2 was established at 91%
Lowest SPO2 recorded was 80%
I sletp a total of 10 minutes with SPO2 less than 88%

Total Oxygen Desaturation Events was 67.
Oxygen Desaturation Index (>3%/hr sleep) = 35

Snoring was mild and intermittent.
Cheyne=Stokes breathing not observed.


I do waken during sleep, sometimes often, sometimes not. Most all times, I am groggy, notice I'm awake and fall back to sleep. Most occurrences are noises due to mask leakage. I was using a Quattro FX full face mask until two weeks ago. Now using Airfit P10 Nasal Pillows as an attempt to reduce wake ups due to mask leakage. One note, wife observed me snoring several times while wearing mask. One thing though, I have maybe only had one time where I failed to fall back asleep within the same minute, it it took that long.

The nasal pillows will wake me up because one isn't sealing right, as if the whole thing has shifted one way or another. Most times, if I purse my lips to the mask, it reseats and is fine. Others I have to grab it with my hand to reseat. I have also had an issue as of late with air leaking out of my mouth and this will wake me up. i sleep with my mouth closed and I wake up feeling it blowing up like a balloon. I concentrate on shutting off that part of my throat and I fall back asleep.

The only time I have ever had 0 AHI overnight was two weeks ago. My third night with the Airfit P10. Never with the mask.

I suppose I suspect mask leaks, perhaps they are covering events with the S9 Escape Auto (keeping AHI low) Although, my SPO2 didn't drop significantly. Still suspect of the accuracy of the CMS50.


robysue - I'll do another Sleep Study, not opposed to it. In fact, depending on what the new machine says, I may request it myself.

The new neurologist well, she put me on Nuvigil and scheduled a follow up in three months, so I'm not looking for any new developments from her. I called her yesterday asking for a prescription for a new machine that records data. She called me back and said Insurance wouldn't pay for it and all but argued with me that the S9 Escape Auto will tell you more info. I explained to her I'd pay for it myself. I tried explaining to her that I have the ResMed software and the Sleepyhead open source software (I am in IT myself) - There's nothing there. It notes that the prescription changed (I changed it from CPAP @9 to APAP from 10-20), but it does not log any additional data as I had hoped it would. Still she wants the data as it's read from my DME.

So I gave up and ordered one from here where I wouldn't need a prescription.

I believe in CPAP therapy. I think I just need to fine tune it a bit. However, I didn't know if there was any other place to go or another type of doctor to see, or another avenue I have missed?

I'm 47, so fairly young, not older, 5'11, 214 pounds and work out 3-4 times a week. BP is about perfect, 120/70. Blood glucose is a tad high, but diabetes does run in the family. Trying to keep that at bay.

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Pugsy
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Re: Feeling good <> AHI or SPO2

Post by Pugsy » Fri Apr 24, 2015 12:12 pm

I wonder if you might have an underlying UARS component to your OSA and it sounds like with the bulk of your sleep study events being hyponeas that it might be possible.
Google UARS...Upper Airway Resistance Syndrome
If you do the therapy of choice is still cpap but maybe needs more fine tuning and the AHI for UARS patients is pretty much useless as a guideline.

When you get your full data machine lets look at the leak and the flow limitation graph as well. Maybe something will stand out there.

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tedburnsIII
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Re: Feeling good AHI or SPO2

Post by tedburnsIII » Fri Apr 24, 2015 9:06 pm

Isn't there some kind of rule of thumb to go 3 under and 3 over recommended pressure as the starting apap pressures (e.g., 6-12cm)?

Would a higher APAP pressure starting @10 be warranted or appropriate?
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leeirvin
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Re: Feeling good <> AHI or SPO2

Post by leeirvin » Fri Apr 24, 2015 10:36 pm

I'd never heard of UARS. Some of the criteria fit and some doesn't. Now I am confused, but at least I know, if there are leaks, my AHI data will not be a good indicator. I'll just wait until the new machine gets here.

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