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Sanity check on next steps (still tired)
#1
Sanity check on next steps (still tired)
Hey everyone,

First - thank you in advance for any advice you can give! It's greatly appreciated!

About me: I'm early 30s, 6'2, 180lbs. Normally, I'm fairly active, but the pandemic took away my sports so I've been more potato-y recently. I take Modafinil in the morning for fatigue.

Timeline:
  • I was diagnosed with UARS about 10 years ago, after a few years of testing for sleeping issues. 
  • I had a CPAP machine, which I used for a couple years and quit because I didn't notice any difference whatsoever. 
  • I went back to the doctor a year or so ago and he convinced me to give it another go, with an APAP. I've been using the system since then.
I sleep on my back (trained to do so when I was using CPAP because the mask would leak otherwise) and I use a headband to keep my mouth shut during the night. I find that the nasal mask is the only one I can use without leakage issues (especially if I turn to lay on my side at some point).


Problem is, I still don't feel any better. It's soul-crushing at this point. I haven't had a good night sleep since I can remember (not an exaggeration) and I just want to sleep well. I feel tired when I get up and ready for a nap. If I don't take Modafinil, I'm so tired after lunch I can't concentrate.

The last few nights must have been terrible because I'm barely able to concentrate during the day, so I figured I'd really dig into things this time, figure out what's going on.

Unfortunately, I don't have my latest sleep study results handy. I will put in a request for it.

After downloading and examining my data, my concern is with the number of CAs I'm having.

Based on some reading, here is what I am thinking:
  1. I disabled pressure assist (did so today);
  2. I am going to get a soft cervical collar.
Hopefully, disabling pressure assist with help with my CAs and the soft collar with help with ensuring I'm not cutting off my airway.

I've attached a few examples from OSCAR. Could you please let me know if the actions I list above are the best route forward? If not, please recommend something else. I'm more than happy to experiment.

My apologies if I've attached images incorrectly. I'm happy to adjust and followed what I had seen in other threads.

Thanks!
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#2
RE: Sanity check on next steps (still tired)
Just looking at your chart and it seems to me your bottom pressure is to low with your EPR at 3 and that is why you more than likely are getting obstruction apnea's. Either turn down your epr to 2 or 1 or off. If you like your EPR go to 2 and increase your minimum pressure to 7.4 & try that for a few days possibly.
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#3
RE: Sanity check on next steps (still tired)
(08-10-2020, 05:53 PM)Canuck 2 Wrote: Just looking at your chart and it seems to me your bottom pressure is to low with your EPR at 3 and that is why you more than likely are getting obstruction apnea's. Either turn down your epr to 2 or 1 or off. If you like your EPR go to 2 and increase your minimum pressure to 7.4 & try that for a few days possibly.

Thanks! I turned off EPR (pressure relief) on my unit. I'm going to give that a couple days. If I can't manage to sleep or it doesn't help, I'll turn up the pressure as well.
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#4
RE: Sanity check on next steps (still tired)
Welcome to the forum.

First turn your Ramp off, at these pressures you do not need it.

Your min pressure should be 7, and I'd set the max pressure to 10. Looking to narrow your pressure range.

Regarding UARS, The only indication I see is the RERA stat which says in the past you had RERAs which are typically a fundamental part of a UARS diagnosis.
UARS is about being sensitive to Flow Limits.  Typically with UARS it takes a BiLevel to deliver enough PS to be effective against UARS.  Your EPR = 3 is treating your Flow Limits as far as it can.  Turning EPR off should increase your detected Flow Limits, also your undetected flow limits and reduce your Central Apnea.

Do you still have the report that the UARS was diagnosed with?  If so redact your personal info and post it here.

We would need to see a zoomed view of your flow rate to check for undetected flow limits and any disturbances around them.  3-5 minute view so we can see the wave form.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

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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#5
RE: Sanity check on next steps (still tired)
I may have it, but it was some time ago. The other is more recent. I'll dig through my files and upload it if I can find a copy.

I've increased the min pressure and disabled ramp.

Thanks again for the advice. I'll follow up with the requested info.
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#6
RE: Sanity check on next steps (still tired)
(08-10-2020, 07:45 PM)bonjour Wrote: Welcome to the forum.

First turn your Ramp off, at these pressures you do not need it.

Your min pressure should be 7, and I'd set the max pressure to 10. Looking to narrow your pressure range.

Regarding UARS, The only indication I see is the RERA stat which says in the past you had RERAs which are typically a fundamental part of a UARS diagnosis.
UARS is about being sensitive to Flow Limits.  Typically with UARS it takes a BiLevel to deliver enough PS to be effective against UARS.  Your EPR = 3 is treating your Flow Limits as far as it can.  Turning EPR off should increase your detected Flow Limits, also your undetected flow limits and reduce your Central Apnea.

Do you still have the report that the UARS was diagnosed with?  If so redact your personal info and post it here.

We would need to see a zoomed view of your flow rate to check for undetected flow limits and any disturbances around them.  3-5 minute view so we can see the wave form.

Thank you for this!

Unfortunately, I have to wait for the report as I don't have a copy.

Quick update about last night:
  • Woke up a bunch, probably have to spend some time getting used to new settings (EPR off, ramp off, pressure 7-16)
  • Woke up with stomach pain (air in stomach). I wonder if this is because of too much pressure on the low end (pressure didn't go over 11). Do you think enabling EPR and setting it to 1 might help with that? I have had this happen before, mostly when I'm laying flat, which I wasn't, but I elevated more and it seemed ok after.
I've attached the report from last night, along with the zoomed in view of flow rates around 2 events. Please let me know if you're looking for a different view.

Edit: Hit file size limit - had to resize files. If they're too small, let me know.


Attached Files Thumbnail(s)
       
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#7
RE: Sanity check on next steps (still tired)
Your Centrals are margihally better (EPR off)
Your Flow Limits are statistically 5 times worse (EPR off). This is well within the normal and good limits for a Non-UARS user.
Increased Aerophagia? due to increase in EPAP (EPR off)

The spike before the 00:57 CA event indicates a tossing in bed, Followed by a smaller breath (normally typical of a central) then deeper breasths indicating a recovery (typical of Obstructive events) following following the central.
The seriesof breathing 00:58:40 - 00:01:00 is a disturbance, A single disturbance is in significant but many such as this throughout the night would be significant.

the second chart shows similar patterns, a more pronounced disturbance before the OA event, a disturbance following and a good amount of flow limitation following.

Note: A tighter timeframe would show the flow limits better but hide the context around them.

I see no proof of UARS here which is why I'd like to see the UARS study. I'm not saying you don't have it.

Ignoring the Aerophagia, which settings felt best to you, which gives you the best sleep?
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

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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#8
RE: Sanity check on next steps (still tired)
(08-11-2020, 09:35 AM)bonjour Wrote: Your Centrals are margihally better (EPR off)
Your Flow Limits are statistically 5 times worse (EPR off).  This is well within the normal and good limits for a Non-UARS user.
Increased Aerophagia? due to increase in EPAP (EPR off)

The spike before the 00:57 CA event indicates a tossing in bed,  Followed by a smaller breath (normally typical of a central) then deeper breasths indicating a recovery (typical of Obstructive events) following following the central.
The seriesof breathing 00:58:40 - 00:01:00 is a disturbance, A single disturbance is in significant but many such as this throughout the night would be significant.

the second chart shows similar patterns, a more pronounced disturbance before the OA event,  a disturbance following and a good amount of flow limitation following.

Note: A tighter timeframe would show the flow limits better but hide the context around them.

I see no proof of UARS here which is why I'd like to see the UARS study.  I'm not saying you don't have it.

Ignoring the Aerophagia, which settings felt best to you, which gives you the best sleep?

The earlier settings felt better, but it's probably because I'm used to them. The feeling with the new settings is somewhat similar to when I started treatment and had to get used to the pressure, etc.

The tiredness in the morning/during the day is unchanged.

I've attached a tighter timeframe for one of the events.


Attached Files Thumbnail(s)
   
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#9
RE: Sanity check on next steps (still tired)
the Min pressure should be the larger of
6 (you are an adult) or
Min = 4(machine min) + EPR (3) to give EPR the full room to work in. Pressures lower than this inhibit the benefit of EPR
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

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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#10
RE: Sanity check on next steps (still tired)
(08-11-2020, 10:07 AM)bonjour Wrote: the Min pressure should be the larger of
6 (you are an adult) or
Min = 4(machine min) + EPR (3) to give EPR the full room to work in. Pressures lower than this inhibit the benefit of EPR

Thanks again for the advice! I left EPR off, as I wanted to give myself more time to adjust.

Last night was far better re. aerophagia and discomfort. I propped myself up with an extra pillow and the pressure didn't keep me up. My mask may have been a little loose, as leaks were higher. Problem is that when I tighten it too much, I have issues with aerophagia, so I tend to err on the side of loose.

Unfortunately, no change in wakefulness and the numbers aren't better. OAs seem down, but CAs up... Any thoughts about that? I know things are limited with just this output.

I'm thinking of shifting the max pressure down, per your suggestion. Am I reading the charts correctly in my understanding that pressure didn't go over 11? If so, I'll set the pressure max to 11 (from 16). Although, I'm not sure if it'll do anything if the pressure isn't going that high.

I may also try to sleep on my side... Not sure whether it's going to help and if I'll be able to get the mask to function without leaking, but I'm happy to try anything at this point.

As soon as I have my latest sleep study, I'll post it.


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