Newbie wants opinions of SH data

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Newbie wants opinions of SH data

Post by Details » Wed Aug 13, 2014 12:12 pm

I'm new here and new to the CPAP crowd. After I was diagnosed I did a lot of reading to try and prepare myself for what my future held. I've just spent my first week with my S9 VPAP Auto and decided to download Sleepyhead and look at the data. I was hoping for a real low AHI, but that doesn't appear to be the case for me, at least not yet. Perhaps some of the experts here can look at the graphs and give me opinions.

Some nights are lower than others, but here is the first night I looked at: Image
Last night was better, but still not what I'd hoped for Image
The sleep center here told me I was around 58/hour when diagnosed, so 26.39 and 11.25 are certainly improvements, but not what I would consider a success. I'm supposed to take the SD card to the DME on the 22nd, so I'll see what she says.

Thanks in advance for your input.

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Re: Newbie wants opinions of SH data

Post by Pugsy » Wed Aug 13, 2014 12:36 pm

Do you have a copy of the diagnostic sleep study report? If not, get it.
Did you have a titration sleep study where you slept with the cpap mask and machine? If so...get a copy of that report also.
If you already have copies of your reports...what was the diagnosis?

Also...the 2 nights above...how was your sleep quality? Did you sleep well without any wake ups or did you have a lot of wake ups and tossing and turning with the mask and machine on.

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Re: Newbie wants opinions of SH data

Post by sc0ttt » Wed Aug 13, 2014 12:51 pm

Don't give up; that is good progress. Took me two weeks before I had my first sub 10 AHI, and 40 days before my first sub 5. Five months into therapy and I'm still not getting great scores but I'm definitely seeing good results physically and emotionally.

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Re: Newbie wants opinions of SH data

Post by Details » Wed Aug 13, 2014 1:24 pm

Thanks for the rapid response!
Pugsy wrote:Do you have a copy of the diagnostic sleep study report? If not, get it.
Did you have a titration sleep study where you slept with the cpap mask and machine? If so...get a copy of that report also.
If you already have copies of your reports...what was the diagnosis?
Unfortunately I don't have any reports. I did an at-home study that gave the diagnosis, and then a week or two later I spent the night at the sleep center when they did the titration (although they never used that word). I will try to get those reports, but don't have any idea how long it will take or even if I will be able to obtain them.
Pugsy wrote:Also...the 2 nights above...how was your sleep quality? Did you sleep well without any wake ups or did you have a lot of wake ups and tossing and turning with the mask and machine on.
The sleep quality was okay. I did wake up a few times during the night to roll onto my side, or scratch my nose (and reposition the mask), but I wouldn't say that it felt unusually restless. Nor did it feel exceptionally restful. There is a gap that you see in the graphs where I get up at 3:00 am every night and test my son's blood glucose (he has Type 1 Diabetes). Other than that, I wasn't awake during the night for more than a few seconds at a time. And if I were to estimate the number of times I was awake, I would guess three to five that I was aware of.

Is there anything specific from those reports that I could ask for? It might be easier to get the sleep center to answer a question or two in lieu of getting the reports. Once again, thanks for your input!

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Re: Newbie wants opinions of SH data

Post by Pugsy » Wed Aug 13, 2014 1:44 pm

They did an in lab sleep study to find the right pressure??? That would be the titration sleep study.
Of main interest is if there is any mention of centrals during that study. A copy of the dictated summary should mention centrals if they were present.
Hard to know if the diagnostic home study even had the ability to record centrals. Not all home studies have all the channels needed to isolate centrals.

Clear Airway events.....centrals and you are having enough of them for a person to stand up and take notice. If you had told me that your sleep quality was horrible and you had a ton of wake ups then we might blame the centrals on awake breathing irregularities.
But since you say you don't remember many awakenings and the ones you did were very brief then I doubt we can blame those centrals on awake breathing.

What are your settings? VPAP fixed mode or auto mode?

I don't know what is going on but the centrals are numerous enough that I would be troubled by them.
Without the sleep studies we don't know if you had centrals even without the cpap pressure being used or if the use of cpap pressure has caused them to appear.

When is your follow up scheduled with your doctor (not the DME) as it is the doctor who needs to be aware of what is going on if these centrals don't reduce on their own. If they are related to pressure (complex sleep apnea) it looks like you have room to reduce the pressure to see if the centrals will reduce. If you had the centrals present during the diagnostic home study then that means maybe a different diagnosis (central sleep apnea) and this machine might not be the appropriate machine.
Normally if complex sleep apnea is involved and the person had an in lab titration sleep study those centrals should/would have been present at that time.

No need to panic right now though. No urgent need to do anything about it right this minute but if the reports don't show centrals reducing by the time you see the DME and your doctor for your follow up appointment (if you don't have an appt for follow up I would suggest you make one) then you may need re-evaluation.

How are you feeling?

Now bear in mind that I am not saying that complex sleep apnea is what is going on here but the number of centrals shown do make it suspicious for CompSA. Just need to watch things really closely.

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Re: Newbie wants opinions of SH data

Post by Details » Wed Aug 13, 2014 2:32 pm

Pugsy wrote:They did an in lab sleep study to find the right pressure??? That would be the titration sleep study.
Yes, it was in-lab. I figured it was a titration, they just never used that word.
Pugsy wrote:What are your settings? VPAP fixed mode or auto mode?
I have no idea what the setting are. The DME turned off everything on the panel except for number of hours. In SH, on the left, there is the 'Machine Setting' section and it lists 'Pr. Relief' and 'EPR x0'. Will SH show all the settings somewhere?
Pugsy wrote:When is your follow up scheduled with your doctor (not the DME) as it is the doctor who needs to be aware of what is going on if these centrals don't reduce on their own. If they are related to pressure (complex sleep apnea) it looks like you have room to reduce the pressure to see if the centrals will reduce. If you had the centrals present during the diagnostic home study then that means maybe a different diagnosis (central sleep apnea) and this machine might not be the appropriate machine.
I called the sleep center to ask for the reports and I also asked about a follow-up visit also since I don't have anything scheduled. They told me they would put the reports in the mail tomorrow, so we'll see what they show in a few days. I have a follow-up with the Nurse Practitioner (at least I think that's what she is) on 9/22. I haven't seen an MD other than my GP who set up the initial appointment with the Sleep Center back in June.
Pugsy wrote:How are you feeling?

Now bear in mind that I am not saying that complex sleep apnea is what is going on here but the number of centrals shown do make it suspicious for CompSA. Just need to watch things really closely.
I'm feeling okay. I'm not as sleepy today (after a night with AHI 11.25) as I was yesterday (26.39), but that may be because I got a little more sleep last night. Overall I don't feel much different than before starting CPAP therapy, other than I might be slightly less sleepy in the afternoon (some days).

As far as watching closely, that's why I'm here! I see such good advice from the people on this list that I figured I would ask questions. The graphs don't make complete sense yet, but I'm trying to learn. Also, it seems that my experience with the Sleep Center here has been on auto-pilot. I wonder if I hadn't called would they have even realized that I wasn't scheduled for a follow-up?

When I get the reports in the mail I'll post here. Thanks again for your help!

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Re: Newbie wants opinions of SH data

Post by Pugsy » Wed Aug 13, 2014 3:03 pm

SleepyHead statistics section on the left below the pie chart will show the pressure settings. I couldn't see it on these images.

You need to learn about your machine.
http://www.apneuvereniging.nl/forum/pdf ... manual.pdf
The settings are in the clinical menu. It's all explained in the manual along with how to get to the setup menu.

If you are seeing a NP on the 22nd that's a good start. DMEs mainly look at hours of use so they get paid but lack any power. NPs have some power to do something if needed.
Not sure anything needs to be done right now anyway.
Let's see what the reports say and see what happens with just a little time using the machine.

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Re: Newbie wants opinions of SH data

Post by Details » Wed Aug 13, 2014 9:29 pm

sc0ttt wrote:Don't give up; that is good progress. Took me two weeks before I had my first sub 10 AHI, and 40 days before my first sub 5. Five months into therapy and I'm still not getting great scores but I'm definitely seeing good results physically and emotionally.
sc0ttt, thanks for the encouraging words. Hearing that it took a while for someone else to see improvements gives me some comfort and that I shouldn't expect overnight success. And I thought that the struggle would be getting used to breathing into the wind and dealing with the mask and hose. So far those things aren't too awfully bad--at least not as bad as I've seen some other newbies complain about.

Can't wait until I'm five months in and seeing some of the same improvements!

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Re: Newbie wants opinions of SH data

Post by sc0ttt » Thu Aug 14, 2014 3:02 pm

Details wrote:
sc0ttt wrote:Don't give up; that is good progress. Took me two weeks before I had my first sub 10 AHI, and 40 days before my first sub 5. Five months into therapy and I'm still not getting great scores but I'm definitely seeing good results physically and emotionally.
sc0ttt, thanks for the encouraging words. Hearing that it took a while for someone else to see improvements gives me some comfort and that I shouldn't expect overnight success. And I thought that the struggle would be getting used to breathing into the wind and dealing with the mask and hose. So far those things aren't too awfully bad--at least not as bad as I've seen some other newbies complain about.

Can't wait until I'm five months in and seeing some of the same improvements!
Check out this chart I made starting with my first day - I think all that progress was just training myself to sleep in a new way and becoming one with my sleeping machine (although I was also on Percoset for the first two weeks for an unrelated reason).

Image

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Re: Newbie wants opinions of SH data

Post by Details » Thu Aug 21, 2014 9:51 pm

I apologize for the length of this post. Okay, I got my reports and scanned them. First is the sleep study:
Page 1
Image
Page 2
Image
Page 3
Image
And then the titration:
Page 1
Image
Page 2
Image
So it looks like I had some Centrals during both studies, but not nearly as many as I'm having now. Here is an overview of the last two weeks (since the beginning for me):
Image
And finally, the settings as reported by SH:
Image

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Re: Newbie wants opinions of SH data

Post by Pugsy » Fri Aug 22, 2014 8:30 am

Yep, looks like you did have a few centrals during your sleep studies but nothing like you are having now.
Your follow up appointment is today? Is that correct?
On your initial sleep study you had a good number of mixed apneas. Makes me wonder a bit if the S9 is having trouble with mixed apneas.

I don't know if complex sleep apnea is what is going on here or not. It's sure suspicious though.
The titration study reports admits that optimal pressures weren't ever reached. Makes me wonder about the central component and how much of an impact it had on things.

Will be interesting to see what the pros have to say about the situation today at your appointment.
See if they want to "give it time" to see if the centrals reduce on their own or if they want to move on to the next machine.

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Re: Newbie wants opinions of SH data

Post by Details » Fri Aug 22, 2014 11:29 am

Pugsy wrote:Yep, looks like you did have a few centrals during your sleep studies but nothing like you are having now.
Your follow up appointment is today? Is that correct?
Today I took the SD card to the DME. Unfortunately my follow visit with a NP at the sleep center is on 9/22, one month away.
Pugsy wrote:On your initial sleep study you had a good number of mixed apneas. Makes me wonder a bit if the S9 is having trouble with mixed apneas.
Are there better machines than the S9? I'm pretty sure my DME only deals with ResMed, PR, and F&P.
Pugsy wrote:I don't know if complex sleep apnea is what is going on here or not. It's sure suspicious though.
The titration study reports admits that optimal pressures weren't ever reached. Makes me wonder about the central component and how much of an impact it had on things.
Yeah, I saw that about optimal pressures not reached. Considering what time they woke me up to go home (pretty sure it was before 6:00am) it seems to me they could have just run the study longer. It would have given a better measurement and potentially saved money.

It was an interesting visit with the DME. She was happy with the compliance but concerned about AHI and is going to contact the doctor. She was pretty sure they would raise the pressure. So we'll see what happens with that.

While I was there I asked about trying a different mask, that I was interested in the TAP PAP from Airway Management to see if it would work better than my current mask. She said they don't deal with that company so I couldn't do that and further, I couldn't do that since the prescription was for a nasal mask. I figured it wouldn't be too much trouble to have the doctor modify the prescription so that shouldn't be an issue and she pretty much agreed (although reluctantly).

So I asked if there were other pillow masks to try and that I'd know after one or two nights if I wanted to go back to my Airfit N10. She said that I couldn't go back to the N10 if I switched to a pillow. I was surprised at this. Evidently, the only way to switch to a different mask is to say the current mask isn't working. And of course, if a mask isn't working, you can't use it. So right now the only way to try a different mask is to buy one myself or wait until the next purchase, six months in the future. She said it was the policy of ResMed, but I'm not convinced (it might be the DME). It's clear that they don't really want the best performance, they're satisfied with just being "okay."

Thanks so very much for giving opinions and encouragement. I'll update this thread when I get the new pressure settings.

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Re: Newbie wants opinions of SH data

Post by Pugsy » Fri Aug 22, 2014 11:50 am

Details wrote:She said it was the policy of ResMed, but I'm not convinced (it might be the DME).
She has told a big bold face lie. All the mask manufacturers allow a 30 day return policy on all their masks and you can try as many as you need with 30 days per mask. The DME doesn't want to do the paperwork. It makes me see red when they lie like this. I would respect them if they just said "it's our policy to do so and so".

Have your doctor or NP write a RX for "Mask of patient's choice"....that way you can remove the "your RX is only for....." hindrance.
That should have been done anyway.
Details wrote:Are there better machines than the S9? I'm pretty sure my DME only deals with ResMed, PR, and F&P.
Not in the sense that you are likely thinking. There may be a different type of machine that would suit your needs better and ResMed makes a really nice one. That would be the ASV type of machine that would treat those centrals if the doctor deems them enough of a problem.

Now please bear in mind that I am NOT saying that you have complex sleep apnea but the number of centrals makes me wonder about it. Watch this video as it explains it better than I do.
https://www.cpap.com/productpage/apex-x ... chine.html

If you do have pressure triggered centrals then an increase in pressure is NOT the way to go. Let's see what the doctor says after DME relates the data to him or his NP.

Actually with the absence of OAs and hyponeas I was thinking maybe a reduction in pressure to see if maybe the centrals would reduce. If the centrals are indeed related to the pressures then increasing the pressure is likely to increase the centrals.
Maybe find a fine line where centrals aren't so numerous and the Obstructive component is still well contained.
The pressure support of 6 cm could also be causing the overshoot undershoot thing if the centrals are indeed related to the pressures themselves.
Unfortunately we can only speculate at this point because the data available to us from the machine doesn't always give us all the information that is needed to figure out exactly what the problem is coming from.
Details wrote:She said that I couldn't go back to the N10 if I switched to a pillow.
Hogwash. She just doesn't want to be very helpful because it involves extra work for her.
What nasal pillow (besides the Tap Pap) or cushion mask do you wish to try? Can you afford to buy out of pocket for it from cpap.com and get one of the masks with free return insurance so if you hate it you can get your money back?

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Re: Newbie wants opinions of SH data

Post by palerider » Fri Aug 22, 2014 12:41 pm

Pugsy wrote: Actually with the absence of OAs and hyponeas I was thinking maybe a reduction in pressure to see if maybe the centrals would reduce. If the centrals are indeed related to the pressures then increasing the pressure is likely to increase the centrals.
Maybe find a fine line where centrals aren't so numerous and the Obstructive component is still well contained.
The pressure support of 6 cm could also be causing the overshoot undershoot thing if the centrals are indeed related to the pressures themselves.
Unfortunately we can only speculate at this point because the data available to us from the machine doesn't always give us all the information that is needed to figure out exactly what the problem is coming from.
I was going to suggest possibly lowering the PS for that reason. perhaps getting 'overbreathed' as it were.

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Re: Newbie wants opinions of SH data

Post by Pugsy » Fri Aug 22, 2014 2:28 pm

palerider wrote:I was going to suggest possibly lowering the PS for that reason. perhaps getting 'overbreathed' as it were.
When I tried PS of 6 (just for grins) I got light headed like I was hyper ventilating. PS of 5 is about the most that I feel comfortable with...PS of 4 works great for me.
I saw a report once from someone who went from PS of 4 to PS of 8 and it was packed with centrals at 8 PS and none at 4 cm. High PS definitely contributed to the high centrals.

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