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Sleepyhead data vs. Doctor's data
#1
According to sleepyhead, my data is horrible, and varies GREATLY from day-to-day, completely and wildly different, even though I sleep in the exact same position in a recliner. Lots of Obstructives, Some Centrals, and anywhere from 1-7 Cheyne Stokes.

I contact my doctor and he pulls up "his data" and sees that my AHI averages between 7-8 and says maybe that's the best I will ever be.

My original sleepstudy was AHI 14 and they said I was borderline for treatment, which I wanted because I felt so unrested.

A few months into my treatment, the Nurse Practitioner called me to tell me I needed another sleep study because my numbers were bad (this was before I had sleepyhead) At my second sleep study, the girl at the clinic told me she had orders to move me from CPAP to BiPap to ASV as soon as she can (for insurance purposes)........however during that sleep the result was that I was ok on just CPAP??

Both sleep studies I only slept a few hours at best.

My 1st question: How do you get an accurate idea of what's going on when your nights vary so wildly? Isn't it just luck-of-the draw what kind of night you have the day of your sleep study?

My 2nd question: Am I over-reacting to my Sleepyhead information thinking the doctor should at least LOOK at the reports, which I admit I don't fully understand the details of. Is there anything specific I should zone in on and print out to show him? I don't know what is important and what isn't.

My 3rd question: At what point do I simply give up on cpap and just avoid the stress altogether since I feel the same, if not worse, after over a year of doing this?
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#2
Question 3, NEVER!

Are they still considering moving you to an ASV? You have mixed apnea; and the ASV is the big dog for treating mixed apnea.

My doctor has never looked at my data in 6.5 years. So, don't expect a lot from the doctor -- but do keep voicing your concerns to your doc.
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#3
You could be my CPAP sister. Don't give up, but also don't sit there and expect them to "fix" it. My Doctor finally gave up on me and said I could change any and all settings I wanted Smile I was happy with this because I had reached a dead end with him, quite early on.

OA's, hypopneas, and flow limits leave you room for improvement. The machine "should" be able to reduce these.

step one-get your events undercontrol. Your plot is interesting and similar to mine (used to be at least). I use Resmed and was trying to figure out how your machine could reduce your pressure right after having several OA's in a row and then I remembered that the Resmed is more "aggressive" with pressure and hesitates to reduce it, the PR, at least how I understand it from this forum, is more aggressive in trying to reduce the pressure whenever it can. Many people like the PR system trying to keep the pressure low, you personally many not react well to this method of treatment. Look at your data and see if the OA's tend to start right back up again right after the PR drops your pressure back down. Your pressure minimum is set to 7 and for this machine and you, this may be too low causing you to go into and out of OA cycles. This is what I was doing, but not into full OA, but dropping to zero-recovering-ramping down to zero again and repeating, over and over for hours at a time-Quite disturbing to sleep.

If you increase your min pressure it should move this increase/decrease pressure pattern up to a higher pressure range, perhaps above where your apneas occur.

I suggest you help your Doctor see what is going on. I also had trouble getting my Doctor to look at sleepyhead plots-for several reasons. He was not familiar with the plots and he was more interested in averages then one night details. I stopped showing him plots and gave him summary information that I compiled. What percentage of nights were high AHI and disruptive and what kind of apneas during the disruptive nights. Voice your concern that being so varied the chances of getting a sleep study that aligns with the disruptive sleeping is slim, what can we do about that?

My Doctor eventually right out asked me what machine I wanted, scheduled a sleep study and with only 30 minutes of sleep that night, got a report that magically said I needed the machine I wanted. The sleep center was in his office and I am sure the talked to the sleep tech to get this. Insurance goes by the sleep center report not the raw data that led to the report. If your disruptive nights are mixed CA and OA, go for an ASV machine. If not you might want to go for a BiLevel machine, they have many more settings to try than your current machine.

If you don't want to change your therapy setting on your own, tell him what you are thinking and why and ask if he will give it a try?

For me I found I also had COPD on top of SA and once we stopped talking about numbers and started talking about how I was feeling-I said "as soon as I lay down I feel my breathing restricted" he referred me to a pulmonologist and I got Dx'd for COPD. THis got the COPD out of the way and back focusing on the remaining changes I needed for the SA treatment. WIth the help of some on this forum I slowly increased my minimum settings and stopped cycling in and out of apneas all night.

I also found out that I am a abnormally slow breather and had to change settings for that (BiLevel). All of this because of this forum and by dragging by Doctor along with me.

I suggest you fight for the best treatment you can get, you may reach a time when it is the best it can be-but I do not think you are there yet.
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#4
(07-16-2016, 01:36 PM)Daisylouu Wrote: According to sleepyhead, my data is horrible, and varies GREATLY from day-to-day, completely and wildly different, even though I sleep in the exact same position in a recliner. Lots of Obstructives, Some Centrals, and anywhere from 1-7 Cheyne Stokes.
There will always be some day to variation, it is important to see the trend across multiple days. Is the night you posted one of your worse nights?
(07-16-2016, 01:36 PM)Daisylouu Wrote: I contact my doctor and he pulls up "his data" and sees that my AHI averages between 7-8 and says maybe that's the best I will ever be.
I would keep asking the doctor question until he explains how he comes up with an AHI 7-8 it is important to know how much you doctor knows and whether he is doing his on data analysis or accepting a conclusion from your DME.

(07-16-2016, 01:36 PM)Daisylouu Wrote: Both sleep studies I only slept a few hours at best.
This is a common problem with sleep studies they take a single same in atypical environment. It is impossible to get a valid measures of center and spread with that process
(07-16-2016, 01:36 PM)Daisylouu Wrote: My 1st question: How do you get an accurate idea of what's going on when your nights vary so wildly?
Think Kiazen:big results come from many small changes accumulated over time
(07-16-2016, 01:36 PM)Daisylouu Wrote: Isn't it just luck-of-the draw what kind of night you have the day of your sleep study?
Absolutely, Nevertheless, it is you first data point, and you have to start somewhere
(07-16-2016, 01:36 PM)Daisylouu Wrote: My 2nd question: Am I over-reacting to my Sleepyhead information thinking the doctor should at least LOOK at the reports, which I admit I don't fully understand the details of. Is there anything specific I should zone in on and print out to show him? I don't know what is important and what isn't.
Please post more nights with more detail and the Folks in the forum will help you with the learning curve and equip you to go back to your doctor with pithy questions

On thing I can't see I your data that is very important the 90% or 95% pressure -My first suspicion is that you range is too wide and creating more apneas. The 90th percentile number is important to determine the best settings to start you on the path of continuous improvement


(07-16-2016, 01:36 PM)Daisylouu Wrote: My 3rd question: At what point do I simply give up on cpap and just avoid the stress altogether since I feel the same, if not worse, after over a year of doing this?

Never Surrender Never give up ! You can do this ! Okay



2004-Bon Jovi
it'll take more than a doctor to prescribe a remedy

Observations and recommendations communicated here are the perceptions of the writer and should not be misconstrued as medical advice.
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#5
I struggled for 9 months on a Respironics machine.. no sleep, more events even though no data. Humidity a big problem..finally a heated hose which helped but then stopped working, new hose - no better. So two weeks ago, I finally told them I was turning in the machine as I had exhausted everything I could do on my end. They quickly upgraded me to a ResMed Air Sense 10 Autoset. The difference is amazing. First there is data.. now I can see what is going on . First couple of nites not so good..but changed pressure and the EPR setting and I'm having best sleep I had in years - 7 plus hrs and from zero to .6 events. So I think it was the machine all along.and also the return pressure..that seems to have helped me. Good luck.. don't give up.
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#6
If your Sleepyhead data does not match the doctor's data, check that the machine model and serial number on his report matches the device you have. If the DME screwed up the data entry in their system, they could be sending your Dr the data for some other poor slob. This actually happened to me! The Dr thought I was not doing well at all with AHI=7 when the correct number was more like 1.2.

Luckily I came prepared to my Dr appointment with a variety of SH charts and summaries and told him these were consistent with what the machine's own display showed. With data backing up my contention that my condition varied over time, even within one night, I left his office with a new prescription for APAP mode instead of CPAP (and my CA events have dropped)
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#7
I have a dream station machine (fixed) and last month I returned to the Sleep Clinic for review.
I didn't take the whole machine with me, just the SD card, and I had printed out some Sleepy Head reports as well.
The sleep techs got quite shi**y and told me the SD card was "corrupt" and unreadable....the specialist doctor said the whole visit was useless without the tech's report...?
I showed him the Sleepy Head reports and he was impressed, and we got on with the review.....while telling me Sleep head had "corrupted" my SD card and I needed to buy a new one.
Got home, checked the card... continues to work fine.
Any clues?
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#8
Some of their software is very picky about there being nothing else on the card. I use a Flash-Air card and in my last visit they could not read it, said there was nothing on it (their software said that, clearly there is something as SleepyHead reads it every day).
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#9
Some versions of Windows will write index files to the SD card and some programs will interpret this as the card being "corrupt". You can tell windows not to do this.
Ed Seedhouse
VA7SDH

Your brain is not the boss.

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#10
(07-16-2016, 02:12 PM)PoolQ Wrote: You could be my CPAP sister. Don't give up, but also don't sit there and expect them to "fix" it. My Doctor finally gave up on me and said I could change any and all settings I wanted Smile I was happy with this because I had reached a dead end with him, quite early on.

OA's, hypopneas, and flow limits leave you room for improvement. The machine "should" be able to reduce these.

step one-get your events undercontrol. Your plot is interesting and similar to mine (used to be at least). I use Resmed and was trying to figure out how your machine could reduce your pressure right after having several OA's in a row and then I remembered that the Resmed is more "aggressive" with pressure and hesitates to reduce it, the PR, at least how I understand it from this forum, is more aggressive in trying to reduce the pressure whenever it can. Many people like the PR system trying to keep the pressure low, you personally many not react well to this method of treatment. Look at your data and see if the OA's tend to start right back up again right after the PR drops your pressure back down. Your pressure minimum is set to 7 and for this machine and you, this may be too low causing you to go into and out of OA cycles. This is what I was doing, but not into full OA, but dropping to zero-recovering-ramping down to zero again and repeating, over and over for hours at a time-Quite disturbing to sleep.

If you increase your min pressure it should move this increase/decrease pressure pattern up to a higher pressure range, perhaps above where your apneas occur.

I suggest you help your Doctor see what is going on. I also had trouble getting my Doctor to look at sleepyhead plots-for several reasons. He was not familiar with the plots and he was more interested in averages then one night details. I stopped showing him plots and gave him summary information that I compiled. What percentage of nights were high AHI and disruptive and what kind of apneas during the disruptive nights. Voice your concern that being so varied the chances of getting a sleep study that aligns with the disruptive sleeping is slim, what can we do about that?

My Doctor eventually right out asked me what machine I wanted, scheduled a sleep study and with only 30 minutes of sleep that night, got a report that magically said I needed the machine I wanted. The sleep center was in his office and I am sure the talked to the sleep tech to get this. Insurance goes by the sleep center report not the raw data that led to the report. If your disruptive nights are mixed CA and OA, go for an ASV machine. If not you might want to go for a BiLevel machine, they have many more settings to try than your current machine.

If you don't want to change your therapy setting on your own, tell him what you are thinking and why and ask if he will give it a try?

For me I found I also had COPD on top of SA and once we stopped talking about numbers and started talking about how I was feeling-I said "as soon as I lay down I feel my breathing restricted" he referred me to a pulmonologist and I got Dx'd for COPD. THis got the COPD out of the way and back focusing on the remaining changes I needed for the SA treatment. WIth the help of some on this forum I slowly increased my minimum settings and stopped cycling in and out of apneas all night.

I also found out that I am a abnormally slow breather and had to change settings for that (BiLevel). All of this because of this forum and by dragging by Doctor along with me.

I suggest you fight for the best treatment you can get, you may reach a time when it is the best it can be-but I do not think you are there yet.

PoolQ: I suppose I may be closing in on the off-topic border, so forgive me if I am, but I am curious. Feel free to answer via PM if you like instead. On the COPD aspect, what steps did you endure to get diagnosed and what treatment is ongoing? FWIW: I got the COPD diagnosis after complaints to Primary Care Doc that I have difficulty breathing all the time, with chest tightness and some coughing occasionally, smoke (not cigarette smoke as I quit some years ago) irritates, hot humid summers and very cold weather causes increased difficulty, can't exert w/o making breathing worse, and so on. I've had several chest x-rays which PC doc interpreted as beginnings of COPD; a pulmonary function test verified obstruction as COPD in early stage.

Trying to be back to posted topic: the only time my pulmonary doc looks at or shows me a data chart is after a PSG. He leaves very little time for Q&A regardless. He may have been getting sleep data via the wireless modem on the DreamStation, at least he never asked for it from me, which proves nothing. I also have heard about Windows adding files onto SD cards, but I don't recall that being a problem either for Sleepyhead or a secondary pulmonary care office getting data from the card that the DreamStation had.
Sarcasm is a hobby of mine. I am not sarcastic on serious issues, implied or otherwise.
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