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300 days with machine, not so-great results, need help on how to proceed
#1
300 days with machine, not so-great results, need help on how to proceed
Hello all,

I've been having extremely terrible nights lately that finally, after a year, made me look into more information in regards to machines and Oscar data in general (of course they don't tell you any of this, but that's an entire subject entirely) and wow! Looks like I've been having issues for longer than I thought. Or I'm just used to it now I guess.

I've been waking up for the past month with headaches and dry mouth especially. I'd like to proceed to a change with my sleep doctor, but before I do I need your advice what to ask for and how to ask for it and/or if I can do anything else to help myself.

I currently don't have my initial sleeping test results, but I will try to get a rendezvous with my doctor for it (Quebec doctors are very hard to contact, unfortunately, hence why I would like to do this right). What I can share is about 300 days data worth with Oscar (gosh I wish I had kicked myself and learned about it sooner, better late then never I guess).

(Also sorry for all the links, I realize you can only post images after 4 posts)

General information:
- Female, Age 38
- 6 feet / 230 lbs (I've been trying to lose weight, but PCOS is making this very hard)
- Always have been a light sleeper since I was a kid. I always wake up in jolts or even when trying to sleep.
- Of course since no one really talks about it, I only found out about sleep Apnea machines about two years ago! It took a year just to get a sleeping test done.
- My body is kinda used to never having a good night's sleep (so idk if I'm having a good one or not)
- Got a machine last year.
- I bought around end of may a ghostbed with an adjustable bed
- Side sleeper when I go to bed, usually wake up on my back.
- I move around a lot.
- I have a Winix Wave 5300 for air purification but also change my filters in the machine each 6 months

- Even before APAP/CPAP always wake up with one of my nostrils clogged.
- During the switch from APAP to CPAP, I was also given APO-Fluticasone which seemed to help my nose, so as long as I take it each night, I don't have this issue.
- Dry eyes when waking up
- Dry mouth with waking up
- Usually go to bed around 3-4am due to work. There was a time when it was more around 6-7 which made results annoying since the machine changes date at 12am.

I have additional images, but I realize I can't link or post then yet before 4 posts, so I'll provide additional attachments as needed.
- Overall stats (see below)

Any and all help, tips or ideas would be appreciated. Despite my year of usage, I'm finding out I am very newbie at all of this.

Thank you very much!


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#2
RE: 300 days with machine, not so-great results, need help on how to proceed
Welcome to Apnea Board.

OK a few things I see that are troubling is the CA events are much higher than anything else. CA to OSCAR and your ResMed AutoSet means Clear Airway. These are referring to Central Apnea, events that you do not breathe. It is like holding your breath, but it is caused by a too low of carbon dioxide that the brain needs to sense to send breath signals. I can try to explain it in another way if it didn't make sense.

I think I saw you state you have been on CPAP for some time, more than 3 months. OK then, I'd also like you to check your Ramp settings and turn it off if it isn't now. Current EPR is Off I think. It must remain Off. Ramp and EPR can add more CA, and we need to avoid it. Your current machine can avoid some CA but not all as we see in the OSCAR data.

We have a situation that more than 3 months use as you have, then you need to get onto a path to get the ResMed AirCurve 10 ASV because of still untreated CA. You have lots of CA as I have said. Research the ASV and ResMed will tell you that only this ASV is designed to combat CA and win. I am not certain of your Canadian medical situation, but here in the US, you need the script for PAP machines typically with sleep study info for medical necessity requirements. Tell Doc you have major CA and list your fatigue and discomfort with PAP therapy. You need to so to speak write a book on how poor you feel with these CA present. You have to make the Doc see your CA and then he/she needs to take action to get you the ASV. When you get to that point of a machine, do not accept any other than ResMed 10 ASV. ANY BPAP other than ASV will multiply the CA. You will despise the BPAP. ASV only is your answer.

Ask us questions, that is what we're here for.

PS the sleep study that got you the CPAP may have the CA info to prove need of an ASV.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: 300 days with machine, not so-great results, need help on how to proceed
Thank you so much for the warm welcome and your answer.

I had a feeling this could potentially need a ASV. Meanwhile, I have turned off ramp (I had actually turned it on for 15 minutes because of the issues the past few days, I had been using it without it before). Potentially dumb question, but what does EPR do exactly?


Also I did a little digger around and  I do have a copy of the sleep study! I was able to get it from my insurance company due to be request for the machine (doctor faxed them the info) and there's a lot more information than I expected. I've removed everything in regards to my name and so on, kept the important parts.

We also suspect we (boyfriend and I) may have gotten a cold or the flu or even covid (we're getting tested for covid tomorrow as a precaution) which sucks since we both work at home and only go out to get groceries right now since March. So this might explain my sudden drop in everything, but it did help me take a proper look around for information and I found this forum so I see it as a win regardless.

I've attach the images below, and it looks like while I did have central sleep apnea, the big issue was central and obstruction hypopnea.

Thank you very much for your help again!


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#4
RE: 300 days with machine, not so-great results, need help on how to proceed
EPR defined: Exhale Pressure Relief. The ResMed AutoSet you have has an EPR setting that is under comfort. EPR for ResMed is Pressure Support in reverse, as normal pressure support on BPAPs adds to the pressure, while EPR drops pressure by 1, 2, or 3 cmH20 depending on EPR setting. Again, this is for information only. I seriously think your use of EPR will make the CA go up quite a bit.

OK if you look at your chart 2, at the top at Parameters, all Apnea events were under C. I think this C is Central, these are the same kind of events as the CA you see now on OSCAR. No other Apnea but CA at all. This can be your evidence that may point to an ASV. All other events were Hypopnea, and the majority were there in the Hypopnea category as well. You had lots of obstructive hypopnea, some central hypopnea, and the rest were all Central Apnea.

Obstructive Hypopnea count was at 258, Central Hypopnea were 31, and CA at 8.

It may be a tough sell for an ASV as the CA there were far less than obstructive hypopnea. I do think though that a BPAP of any sort except the ASV will be worse than what you have now for therapy.

This is what I'd do, make note of every symptom and complaint about sleep that is off, wrong, or otherwise not good or acceptable. Fatigue, brain fog, insomnia, such like. Do mention to doc the concern you have about the CA events being all over your current data charts. Attempt to show the doc an OSCAR chart with all the CA you have presently; maybe someone looks at it. And even ask the doc about what machine is correct for a patient that has Idiopathic (unknown cause) CA and tested to have CA and high Hypopneas.

Keep the questions and charts coming. Maybe there are settings that should be adjusted, and AB members can help out.

Realize this: AB members are not allowed to quit or lose. Coffee
Look for Canadian guys n gals that maybe can chime in on your health rules. Maybe they give us suggestions on what your options are.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: 300 days with machine, not so-great results, need help on how to proceed
Welcome to the forum.

With your time on CPAP your Central Apnea is NOT Treatment-Emergent and as such will NOT go away with time.  That makes it Ideopathic (med speak for I don't know).
Overall your treated AHI, while predominantly central, is consistently under 5 which is the point which the med community says you are well treated, thank you.  To further your treatment thru your medical team you have to prove medical necessity as Dave has mentioned above.  This is accomplished by letting your doc know that this treatment is not working for you.  Thus his suggestion to generate and maintain a symptom list.  Be honest but be complete.  

Here is a Wiki article to read.  http://www.apneaboard.com/wiki/index.php...P_Machines  Note the section on symptoms.

I THINK you may be using EPR = 3. this is particularly bad if you are having predominately Central Apnea.  IF your EPR is in use set EPR = 1, in no way do I want to increase EPR.
Lowering it to zero is ok.

Increased EPR increases the flushing of CO2 out of your system, If this flushes CO2 to below your Apneic threshold a central apnea will occur.  It is 'high' CO2 levels that triggers us to take a breath, not low O2 (that actually causes us to breathe faster).

Please try this and repost.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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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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