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New Member desperate for help
#1
New Member desperate for help
Hi

I am a new member here. I recently found this forum, and first I want to express my gratitude to all the people who spend their time making this happen. You have changed people's lives and deserve all the credit in the world for that.

I am so happy I found this forum, since I really, really need help and unfortunately don't get it from my doctor (who is actually a nurse).
I was diagnosed with Sleep Apnea back in 2017. I have been using a CPAP since then, but not really seen any help from it.
Up till just recently I had a Philips Dreamstation Go, due to my very extemsive travelling. About six months ago, after the recall, I switched to a Dreamstation 2.
I have tried various masks, but feel that a full face mask is best, and that's what I am using. The nasal mask makes the air blow out of my mouth...
My AHI during the sleep study was 16.

I honestly feel like crap every morning and most days. Evenings normally better. Brain fog is a good way to describe how I feel. Sluggish, almost drugged. No energy, no drive. IQ which is half of what it normally is. Overall like my brain is just not working properly.

I have been experimenting with different pressures.
What normally happens is that my CA goes up when I increase pressure to 8-10, but my OA goes slightly down.
Most of my AHI comes from Hypopnea, which doesn't really seem to vary with the pressure.

For my last month, my average Data are;
AHI: 2.8
CA: 0.36
OA: 0.48
H: 1.93
Average (and most frequently used) min pressure is 5.5.
Average actual pressure is 5.9 and 90% pressure is 6.9.
My other settings are:
Ramp pressure: 4
Ramp time: 5 min
A-Flex, level 3

I would do anything to get help. Even though my AHI was "only" 16, I suffer badly from my sleep apnea. I honestly don't even think the machine does much good for me. I feel like crap with it and without it, but I keep using it in hope of... yes what? Not sure what I am hoping for.
But maybe someone on here can help me with some advice on where to start changing settings. Whatever I do now does not work.
My nurse at the local hospital, who is the only person I can talk to, is just looking at my AHI and saying all looks good.

I should also note that I have a deviated septum with very limited air flow in one of my nostrils, and slightly limited in the other one.

I understand there is a software called OSCAR that some of you knowledgeable people can use to give advice, but I also read that it does not work withe the Dreamstation 2. Is that correct, and if so, is there another software I can use?

I also read on here that some people said the Flex settings on Dreamstation can cause excessive Hypopnea. I have most of my AHI coming from those, could changing that setting be worth trying?

Thanks for reading my post, and I just hope that someone can give some advice. This is killing me.
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#2
RE: New Member desperate for help
Hi Mandrake!  -  Welcome
The newest version of OSCAR, version 1.4.0, does include the DS2's data structure.  It is free to download and use.  The download link is at the top of every page here on the board.  You will also need any SD card that is 2 to 32 GB in size to acquire the DS2's data.  Please use the F12 key (Fn+F12 on a Mac) to take the screenshot of your Daily screen.  This will collapse the calendar and remove the right sidebar, if either is open.   Hopefully, we will be able to see what problems you are experiencing and help.

- Red
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
The Guide to Understanding OSCAR
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Apnea Helpful Tips

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.
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#3
RE: New Member desperate for help
Welcome to the forum Mandrake!

The people that help here are magnificent and so well informed.  I don't have their skill, but I"ve benefited so much from changes they have suggested.

I use an iMac.  I use OSCAR and recommend you consider using it too, as Red did.  If I can get it on my computer and use it, it's magnificently written, and very well supported!

The links on his response to you will really help. And if you set up the charts the way described in "OSCAR Chart Organization" on his post above, it will help them respond to make suggestions.

I've been compliant for about 35 years. As you described, my own experience was that my treatment wasn't working.  I used to count the days I felt rested on the fingers of one hand.

Like you I'm so grateful that volunteers here help so many people.
DaveL
compliant for 35 years /// Still learning!

ResMed N20; ResMed P30i modified headgear; F&P Evora Full FFM



I'm just a cpap user like you. I don't give medical advice. Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea. Sleep-well

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#4
RE: New Member desperate for help
If the CPAP is keeping your AHI down but still feel bad, in addition you may need to improve your sleep routine. How often do you wake up during night? How many hours are you shooting to get? 

Some supplements, drugs, and late night drinking or eating can crash your sleep quality.
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#5
RE: New Member desperate for help
       

Here are the charts.
Two last nights. Only difference is last night I skipped Ramp function and decreased A-Flex from 3 to 2. Never tried this before, but I think it actually helped. 
Sure though that this is not the optimal settings, since no optimization has been done...
Looking forward to any comments and advice.
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#6
RE: New Member desperate for help
I believe your min is to low. The absolute lowest your machine is 4. That is just not enough air going through the Cannula. For instance I need at least 9 to get enough oxygen or I’m pulling off my mask.

I would raise the min to 6 and see if that is better for you.
Apnea (80-100%) 10 seconds, Hypopnea (50-80%) 10 seconds, Flow Limits (0-50%) not timed  Cervical Collar - Dealing w DME - Chart Organizing
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#7
RE: New Member desperate for help
Good call from staceyburke.  We routinely advise people who come here with poor results, and whose lower limit is much less than 6, to consider raising their lower set limit.  This is important when treating obstructive apnea, which appears in your data and graphic records depicted above.

I do see some possible clustering of events, although it tends to come later in the night, towards morning.  We'd need to see another two or three nights' worth of data to be sure, but it you are showing clustering, it usually means your chin is dropping toward your chest at some point, which pinches the trachea some and puts increased pressure into the tongue and epiglottal tissues.  They close up a bit on each other.  If this turns out to be true, you would be advised to consider a soft foam cervical collar, suitably sized for you, that helps to keep your chin higher.
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#8
RE: New Member desperate for help
As mentioned above you need to raise your min pressure to at least 6, I'd also bump your max pressure to 10.
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#9
RE: New Member desperate for help
Your Max pressure doesn't matter unless your pressure is on a continual increase and I do not see that with your charts.
Your min is IMHO too low, BUT your numbers are very good and don't in and of themselves demand a change so.

I want you to tell me if the below settings feel better or not. So use these settings for another night thinking about how these settings (min = 4) feel. If you think you got that try this

Min Pressure = 6
Max pressure = something between 10 and 20 which is your machine's max. I run my max at the machine's max and NEVER have hit it.

Which settings subjectively feel better, do not look at your results until after you do this. Why does it feel better or worse?
Let us know and do post your daily charts when you do,
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#10
RE: New Member desperate for help
Hi all and thanks for your comments and advice.
I see that several have suggested a higher min setting. I have tried that several times and I will attach some charts in this post from a couple of those nights. Data tells me my CA and H increases, while my OA decreases.

I would like to ask you about the A-Flex. I read this thread where a moderator named Sleeprider says that on some people Philips' Flex settings will cause more events, especially hypopnea. Based on the two charts I attached in a previous post above, that seems to be the case for me. 
Does anyone on here, maybe even Sleeprider himself, have any input on this?
Would it be worth trying to skip (i.e. turn off) the Flex settings completely?

Thanks in advance.

Charts attached with A-Flex level 3 and higher starting pressure.
   
   
   
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