Post Reply 
Sleepyhead data vs. Doctor's data
Author Message
Daisylouu Offline

Preferred Members

Posts: 69
Joined: Jun 2015

Machine: Philips Respironics Rem star Auto
Mask Type: Hybrid
Mask Make & Model: Mirage Liberty
Humidifier: unsure
CPAP Pressure: 8-16
CPAP Software: Other Software

Other Comments:

Sex: Female
Location:

Post: #1
Sleepyhead data vs. Doctor's data
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?
07-16-2016 01:36 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
justMongo Offline

Monitors

Posts: 3,839
Joined: Sep 2013

Machine: ResMed VPAP Auto (S9)
Mask Type: Full face mask
Mask Make & Model: ResMed Mirage Quattro
Humidifier: ResMed H5i
CPAP Pressure: 18 IPAPmax - 11 EPAPmin, PS=5
CPAP Software: Other Software

Other Comments: μολὼν λαβέ

Sex: Male
Location: Калифорния

Post: #2
RE: Sleepyhead data vs. Doctor's data
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.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
(This post was last modified: 07-16-2016 02:01 PM by justMongo.)
07-16-2016 02:01 PM
Find all posts by this user Post Reply Quote this message in a reply
PoolQ Offline

Advisory Members

Posts: 986
Joined: Jul 2015

Machine: AirCurve 10 VAUTO
Mask Type: Full face mask
Mask Make & Model: Amara View
Humidifier: Integrated
CPAP Pressure: 6.2, 15, PS4.0
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Sillicon Valley

Post: #3
RE: Sleepyhead data vs. Doctor's data
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.
07-16-2016 02:12 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
0rangebear Online

Advisory Members

Posts: 341
Joined: Jan 2016

Machine: ResMed AirSence 10
Mask Type: Other
Mask Make & Model: Amara View
Humidifier: HumidAire (Built-in)
CPAP Pressure: APAP 12.8-15 EPR 3 (cmH2O)
CPAP Software: ResScan SleepyHead

Other Comments: Ramp off

Sex: Male
Location: Brighton Colorado

Post: #4
RE: Sleepyhead data vs. Doctor's data
(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.
07-16-2016 02:29 PM
Find all posts by this user Post Reply Quote this message in a reply
Mary Anna Offline

Members

Posts: 18
Joined: Jul 2016

Machine: Air Sense 10
Mask Type: Nasal mask
Mask Make & Model: Phillips Wisp
Humidifier: Air Sense 10
CPAP Pressure: 10
CPAP Software: ResScan

Other Comments: EPR setting on 3 this is helped me.

Sex: Female
Location: TX

Post: #5
RE: Sleepyhead data vs. Doctor's data
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.
07-16-2016 03:17 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
Sn00zeAlarm Offline

Preferred Members

Posts: 72
Joined: May 2015

Machine: Resmed A10 autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed P10
Humidifier: Builtin
CPAP Pressure: 5-7
CPAP Software: SleepyHead

Other Comments: Heated hose

Sex: Male
Location: Florida US

Post: #6
RE: Sleepyhead data vs. Doctor's data
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)
07-16-2016 07:57 PM
Find all posts by this user Post Reply Quote this message in a reply
Rip and Rosie Offline

Preferred Members

Posts: 29
Joined: Feb 2016

Machine: RemStar Pro
Mask Type: Nasal mask
Mask Make & Model: Fisher & Paykell Eson
Humidifier: Dream Station
CPAP Pressure: 10.5
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Australia

Post: #7
RE: Sleepyhead data vs. Doctor's data
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?
09-01-2016 05:29 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
chill Online

Advisory Members

Posts: 850
Joined: Mar 2016

Machine: DreamStation X500
Mask Type: Full face mask
Mask Make & Model: Walk-in Mask Closet
Humidifier: DreamStation
CPAP Pressure: 13-16
CPAP Software: SleepyHead

Other Comments: CPAP True Believer

Sex: Male
Location: Vancouver, Canada

Post: #8
RE: Sleepyhead data vs. Doctor's data
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).
09-01-2016 05:59 PM
Find all posts by this user Post Reply Quote this message in a reply
eseedhouse Online

Advisory Members

Posts: 878
Joined: Dec 2014

Machine: ResMed Airsense 10 Autoset
Mask Type: Full face mask
Mask Make & Model: SimPlus
Humidifier: ResMed
CPAP Pressure: 7-10
CPAP Software: SleepyHead

Other Comments: Also on supplemental O2 at 3L/min. while sleeping.

Sex: Male
Location: Victoria, British Columbia

Post: #9
RE: Sleepyhead data vs. Doctor's data
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

I am neither a Doctor, nor any other kind of medical professional.

Actually you know, it is what it isn't.
09-01-2016 06:10 PM
Find all posts by this user Post Reply Quote this message in a reply

Donate to Apnea Board
Post Reply 


Possibly Related Threads...
Thread: Author Replies: Views: Last Post
  sending sleep study to another doctor's office sleepytimegal 3 206 11-30-2016 10:26 PM
Last Post: Mosquitobait
  ADVICE ON THIS DATA Gazz 3 245 11-21-2016 11:13 AM
Last Post: OpalRose
  Totally Confused by Airsense 10 Data - Centrals - Problem machine... ? mymontreal 20 969 11-20-2016 08:07 AM
Last Post: Rcgop
  SleepyHead disappearing data?? Lanco 25 794 11-14-2016 03:28 PM
Last Post: Sleeprider
  Sleepyhead data taly 2 207 11-12-2016 08:37 PM
Last Post: Sleeprider
  [Equipment] ResMed AirSense - Is there data storage on the SD card AND in the unit itself? FormerFed 19 2,431 11-03-2016 03:17 PM
Last Post: PreciousRoy
Question A10 autoset in CPAP mode- all data recorded? PreciousRoy 3 243 10-31-2016 04:25 PM
Last Post: trish6hundred

Forum Jump:

Who's Online (Complete List)