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Please help me talk to my doctor
#1
Please help me talk to my doctor
Despite an average AHI under 2, I’ve been experiencing worsening fatigue for the last few months, to the point where I’m having difficulty functioning normally throughout the day. I feel groggy, and all I want to do is just sit around with my eyes closed. (I’m not exactly “sleepy”, and if I try to nap, I don’t fall asleep.) I saw my PCP on Monday who did a bunch of lab tests, all normal. She believes it's probably a sleep issue (I told her I wake up frequently during the night) and that I should make an appointment with my sleep doctor, who is in the same clinic.
 
The problem is, other than my fatigue, I’m not sure exactly what I should be telling him or asking him for best results, so any suggestions on what to pursue with him would be welcome.
 
Based on my last appointment, I suspect he won’t be looking much past my AHI. Should I be asking him about trying a BiPap? I have a vague idea of what UARS is, but I don’t know if that’s my issue, and don’t know if he’ll even think that’s “a thing”. He did say at my compliance meeting that if I couldn’t tolerate CPAP, that I might be a good candidate for the Inspire and could be tested for that. I don’t think I’d want to go that route even if I’m a good candidate, but I assume he’s referring to a Drug-Induced Sleep Endoscopy test. Would it be good to have that test anyway, even if I’m not interested in the Inspire?
 
Issues:
  • Extreme fatigue despite low AHI. My fatigue level never improved on CPAP, and has gotten dramatically worse in the past 2 1/2-3 months. I have grogginess, occasional lightheadedness, and in the past couple of weeks, headaches that are sometimes just in the morning, sometimes last all day.
  • Fragmented sleep, with difficulty falling asleep and staying asleep.
  • Low Minute ventilation – averages about 3 (I mentioned this to him before, and he ignored it.) My respiratory rate is about 10.5 breaths per minute, tidal volume about 300. 
  • My O2Ring shows a lot of time in Sp02 drop, but I don’t know if he’ll accept the "non-medical device" results: Average SpO2 drop index:  14.12. 
Background:

I am female, 66, with BMI < 20 and only occasionally snore. No major health issues, no allergies, no nasal congestion. My sinuses are clear, and I have a “perfect” septum. I had a pulmonary test done about 5 years ago which showed I had “mild airflow limitation” that was not reduced following a bronchodilator. I live at 4200 ft elevation.

Overnight Sleep study – is the RDI a clue?
                The AHI scored at 3% and 4% were 13.0 and 12.0 respectively.
                The RDI scored at 3% and 4% were 30.2 and 29.3 respectively.
                The central AHI was 8.36.
                Conclusion: Moderate obstructive sleep apnea (AHI=21/hour, mean saturation 93%)
                Oxyhemoglobin Saturation was below 9% for 0.30 minutes or 0.12% of total sleep time
 
Since the beginning of October last year, I have been at fixed pressure of 8 with no EPR based on the recommendations from my sleep study titration.
 
Stats since starting CPAP
Average 95% flow limitation: 0.09
                AHI 1.72
                OA Index: 1.17
                Hypopnea index: 0.41
                CA Index 1.29
                RERA: 0.07
 
                From my O2Ring:
                Average Sp02: 93.11
                Sp02 Drop Index: 14.11
                Pulse change index: 15.32
 
The few times I tried EPR when I first got the CPAP, and the two nights at the end of last year when I tried Autoset at pressure 8-12 with EPR=1, I had no real improvement and had more CA’s and felt worse. I should have stuck with more nights of testing, but I was having trouble with my mask and it turned out that I was also at the start of getting terrible cold (maybe RSV?). Maybe I should give this a try again.
 
Recently I tried setting my pressure to 9 with EPR 1 for 6 nights. The first night wasn't great – not much difference other than more CA’s. But then I had several good sleep nights: much more REM and deep sleep, and no long awakenings. These were probably the most restful nights I've had since I've been on CPAP and I slept much later than usual. When I woke up, I felt the best I had since starting CPAP. My flow limits looked slightly less than usual, but I definitely had more CA’s. Then I had a couple of worse nights where even though my sleep felt better than usual, I felt tired in the morning and had some headaches that bothered me enough to return to the fixed pressure without EPR. I see that my SpO2 drops for the nights I had EPR on were higher than normal, ranging from 10-28/hr.
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#2
RE: Please help me talk to my doctor
Please post a typical example of an OSCAR daily results chart. My guess is that your flow limitation is fairly high. We can mitigate flow limitation, RERA and hypopnea with pressure support or EPR and we really need to know your settings, before we can advise on how to approach the doctor. Have you ever made changes to your settings?
Sleeprider
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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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#3
RE: Please help me talk to my doctor
Here are some screen shots from last night, which was fairly typical. 

Full night plus a couple of zooms. I have the experimental user flow limit flags turned on, so there are more flags showing in the events than usual.

I've only changed my settings a few times - just the times mentioned in the first post. I'll get some screen grabs.


Attached Files Thumbnail(s)
           
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#4
RE: Please help me talk to my doctor
Attachments are:

Last night's sleep cycles in case that's of value 

One of the nights I tried APAP (8-12, EPR=1) (Dec 26 2023)

Last week when I changed my settings to Fixed pressure of 9.0 with EPR=1 (May 1)


Attached Files Thumbnail(s)
           
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#5
RE: Please help me talk to my doctor
Well, this is too easy. Try these settings:
Mode Autoset Standard
Minimum pressure 8.0
Maximum pressure 11.0
EPR: on, full-time
EPR setting 2

You should have asked sooner.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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#6
RE: Please help me talk to my doctor
Thank you, I will try those settings tonight. 

As for asking sooner... I did have a therapy thread here, which was when I tried the Autoset in December. But at that point it seemed like I was just as well off with the fixed pressure. 

When I started getting fatigued in February, I didn't really think it was the CPAP therapy, since I'd been feeling about the same for the 5 months I'd been on it. I figured it was probably a B12 issue since I had that last year and had even worse fatigue to the point where I was nodding off randomly. But another B12 test was normal (though lower than it was last September), so that's why I ended up at my PCP for more tests this week.
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#7
RE: Please help me talk to my doctor
We try alternative modes and pressure to get feedback on whether you're more comfortable or not. If everything is working, the feedback is often something like, "that looks great", so it really takes your subjective feedback that sleep is not good, experiencing fatigue etc, for us to kick it into gear to try something else. There are enough flow limits here to motivate a try with EPR and a different group of settings. It's a lot more visible in this image than in any of the statistics. The really long inspiration time vs expiration time should have been a tip-off.

[Image: attachment.php?aid=63855]
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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: Please help me talk to my doctor
That makes sense. 

I should have spent more time trying different settings and for longer time periods (I know just a night or two isn't giving it enough time), but I felt so awful after the trying the Autoset the second night that I didn't want to continue. But as it turns out, I was coming down with an awful respiratory illness, so that might have been part of the issue.
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#9
RE: Please help me talk to my doctor
Here's the info from last night with the settings you suggested. I think it went well. I do still feel tired and have a mild headache, but I feel a little better than the last few days. My breathing definitely felt easier, and although my sleep wasn't great overall, it felt pretty good. I did get up twice to pee, which is a bit unusual. 

I had a difficult time getting to sleep due to knee pain, so the first part of the night is rubbish: I went to bed at 10:30, didn't get to sleep for nearly an hour, then had about half an hour deep sleep followed by half an hour core sleep, then woke up and had to pee. I deliberately removed my O2Ring so I could get a separate session for the rest of the night. You can clearly see those stages in the first CPAP session and the O2 data. 

The rest of the night was much better. I actually have some segments of straight lines in my SpO2! And I got a 10.0 score from the O2ring for the second session, which is extremely unusual. (The first SpO2 session was only 7.9. All Sp02 drops for the entire night were in that first segment, mostly while I was awake.)

I've attached my full night's Oscar data, a snippet from when I think I was in core sleep (1:16 am), and another from deep sleep (3:01 am)


Attached Files Thumbnail(s)
           
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#10
RE: Please help me talk to my doctor
Flow limits are still present but lower. We're balancing against increased CA events, however I think we can disregard the early cluster. Overall, the pressure should not feel much higher than the fixed pressure of 8.0 and it's encouraging you found this comfortable. Interesting how respiration varies with sleep stage. I'd like to see this continue for a few nights to get the trend.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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