Why did dropping my EPR affect my brain fog, lack of energy, etc.?

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albigensian
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Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by albigensian » Mon Sep 20, 2021 9:23 pm

Can you help me to understand why decreasing EPR has changed my life?

I can’t figure out why increased expiratory pressure has dramatically decreased my lassitude, brain fog, and general exhaustion. I need to understand it because, once I do, I might be able to make even more improvements in my quality of life.

I hope that this post and its threat will help others struggling with the problems that I had. I admire the people on this board who are doing such great work sharing what they know!

THE OUTCOME OF ADJUSTING EPR: About a month ago, I dropped EPR from 3 to 1; minimum pressure was 5. I then had a dramatic decrease in AHI, which has dropped to below 1 from around 4 or 5 and up to 9 or 10. The decrease in AHI is mostly due to a dramatic decrease in clusters of clear airway events.

The big news is that I had an equally dramatic change in my consciousness during the day. I am much less foggy, less in a stupor, less cognitively challenged. I feel more like myself prior to beginning therapy: alert, focused, capable of moving from intention to action.

Take a look at the two attachments: one, OSCAR screenshot from August 17 with EPR at 3; the other, a screenshot from August 18 with EPR at 1. See the dramatic difference?

CLEAR AIRWAY EVENTS – TRYING TO FIGURE OUT WHAT THEY WERE: because I did not do an in-lab sleep test, I didn’t get detailed results that would tell me the ratio of obstructive to central apnea. As I learned by reading (thanks to all), my machine doesn’t know if my “clear airway” events are central apnea or something else. All it knows is that I wasn’t breathing and then, when it gave me a pop of air, it didn’t hit an obstruction. (I think that’s correct.) When I learned that clear airway events were associated with the dreaded central apneas, I read and worried about that for a while.

But reading a lot of threads gradually moved me to experiment with EPR.

But, I will confess, I still can’t visualize what the change did. All I know is that it worked. Based on what I’ve read, it has something to do with keeping my airway open. But, why? Can someone give me the For Dummies version? I have stared at Oscar and looked for changes in patterns of respiration but, I will confess, I can't see what others might be able to see. (If you want detail from anything, let me know and I will post it.)

I am turning to the community of experts with the hope that you will:

(a) Offer your ideas about why changing the pressure against which I expire – oh, that sounds so wrong! – made such a difference. Why would changing the expiratory pressure decrease these clusters of clear airway events? And why would these clear airway events have been causing this array of problems – brain fog, lassitude, enervation, cognitive challenge, stupor.
(b) Offer your ideas about what was causing the bursts of Clear Airway events that were a primary problem before the change in EPR. If I wasn’t breathing (and OSCAR says that I wasn’t), what was causing me not to breathe?
(c) Offer your ideas about the relationship (if any) between Clear Airway events and “lip flutter.” I thought that they were related but, as my clear airway events have largely vanished, lip flutter still remains and still disturbs my sleep. (Read the section below on lip flutter, if you can stand that level of detail.)

BACKGROUND INFORMATION: 68 years old, female, healthy and fit. Not overweight. Under treatment for nothing but lifelong allergies. No prescription drugs except for Montelukast and nasal sprays. Good sleep hygiene, regular exercise (treadmill, weights, yoga). I drink alcohol (hello, single malt!) but always moderately and always with periods of abstinence to avoid physical dependence. Lifelong sleep problems: insomnia, early morning awakening (beginning in mid-life), broken sleep. On and off with sleep medication during midlife, always careful to never take it more than two days in a row (to avoid physical dependence). Over the past decade, worsening sleep problems—struggling to fall asleep, waking up a lot, nocturia, unable to get back to sleep after awakening – that I had chalked up to aging.

WHAT PROMPTED ME TO GET A SLEEP STUDY? My allergist was the one who recommended the sleep study. During annual check-ins over the course of two years, I had complained of early morning headaches that lasted for hours and of being tired during the day and sometimes feeling unable to breathe out (expiration) during the night. I was also being forced to sleep on my side at some point during the night (something that’s physically hard on me because of joint issues) and had a vague sense that my body was demanding this “so that I could breathe.” I was blaming all of this on allergies but he didn’t think I was right.

SLEEP STUDY RESULTS: My sleep study in October of 2020 (appended) showed an AHI of 26, with the OAI score of 18. It was at at-home study (COVID, hello). I was put on Resmed Airsense for Her, the version that has two algorithms in it. I got a cursory visit from a DME who didn’t do much or know much. However, I adapted rapidly to wearing the nasal pillows and using the machine. I had very little leakage. I wore the device for 8 or more hours. No problem.

STARTING TREATMENT in December of 2020: I adapted rapidly and was delighted with initial results. I could feel the difference that therapy made. I was sleeping through the night after years of constant awakening and struggling to get to sleep and stay asleep. For the first few months, slept A LOT and was groggy almost all of the time. But I was SO happy to be sleeping! I was groggy but good natured. And all of the advice said, “it can take six months to get used to therapy. Be patient.” My AHI was good – generally, about 5 and only occasionally up to 8 or 10.

PROBLEMS REMAINING/EMERGING AFTER SIX MONTHS OF TREATMENT: After six months of treatment, it was clear that something was not right. I was no longer groggy and no longer wanted to sleep all the time BUT my dominant state was lassitude. My brain was foggy; I felt as if I was in a stupor; my usually-sharp mind was slow and dull; I was more likely to stare into space than to get things done. Even with my lifetime of sleep problems, I had been sharp, on task, clear-headed, active. (True, some of that was through jacked-up levels of cortisol.) The contrast between pre-treatment and post-treatment was dramatic: yes, I was sleeping – but I was also dull-witted and drained. I could pull myself together for short periods of time and interact/act “normally” but, afterwards, I was drained.

WHAT DID THE SLEEP DOCS SAY? Surprise! Sleep docs (two of them) had no suggestions. The first one told me that therapy for sleep apnea was not about improving my quality of life; it was about extending my life. The next one listened to me more carefully. He dropped my maximum pressure from 16 to 12. That made no difference. He talked about people whose sleep issues couldn’t be fully controlled by machine therapy and gave me a prescription for Armodafinil. I tried it and it just made me feel like I was on speed when I finally stepped up to the full prescribed dose: a nasty feeling of agitation and buzzing consciousness, nothing close to normal wakefulness.

I began the rounds of non-sleep docs, looking for a non-sleep-related/non-treatment-related reason for my life-changing brain fog and lassitude: a broad range of blood tests from my primary care physicians produced no clues, so I moved on to ENT’s (“no, there is no hidden sinus infection or issue – we’ve checked everything”), cardiologists (“doesn’t really seem like a heart problem, but we’ll run some tests”), rheumatologists and neurologists and endocrinologists. The final stop was going to be a psychiatrist, as some research (emerging from an on-line search) suggested that Welbutrin was sometime used successfully for treatment-emergent problems like brain fog.

WHAT DID OSCAR SHOW? Prior to decreasing the EPR, I had generally good AHI’s, typically a bit less than five but sometimes spiking up to 8 or so. Not bad, by any typical (sleep doc) measure. (Look at the 8/17 OSCAR data to see what a typical night looked like.)

Until my most recent adjustment (dropping EPR to 1), OSCAR showed clusters of clear airway events that coincided with periods of wakefulness during the night or that forced me into awakening. These often came near the end of the night but sometimes hit in the middle. OSCAR also showed OA events but these tended to be scattered throughout the night and didn’t tend to cluster.

Because the Clear Airway events tended to cluster at the end of my sleep period and often woke me up and cut my sleep short, I struggled to understand them and what could be done about them. I knew that many people would dismiss them as SWJ (“sleep/wake junk”) but I became convinced that they could be causing problems for me.

As you can see, after I dropped EPR to 1, my AHI drops and my clusters of open airway events dissolve.

LIP FLUTTER -- MAJOR CHALLENGE THAT I (KIND OF) SOLVED DURING THE FIRST NINE MONTH: At first, I thought that lip flutter was disturbing my sleep and causing my brain fog, lassitude, etc.

About six months into treatment, I realized that I was being awakened by lip flutter (i.e., air being forced out of my mouth because it had nowhere to go). I actually recorded the sounds that I made while sleeping and identified clusters of these events. I couldn’t synch those records with OSCAR’s records of my open airway events, but they seemed connected. (For newcomers: “lip flutter” is not the same as mouth breathing. It is when the machine is trying to send air into your trachea but something blocks or slows the air flow and so the air has nowhere to go but into your mouth. It is often released with a pop-pop-pop sound and the weird feeling of a ball of air rolling around in your mouth as it searches for an exit point.) I posted on the board ("lip flutter during bipap treatment/shallow sleep" was the title of the thread) and got a solution: wearing a cloth band (a headband, like a girl would use to keep her hair back) over my mouth. This doesn’t solve the problem but it does do away with the pop-pop-pop sound that was waking me up. I think I’ve mostly gotten used to the sensation of a ball of air rolling around in my mouth. Air forced into my mouth is still sometimes a problem near the end of my sleep cycle. If I am not fully asleep, the ball of air and the now-mostly-silent pops can keep me from falling back to sleep.

I mention this because I started to think that lip flutter was related to the Clear Airway events. Does anyone out there have any insights? I still seem to have some lip flutter but, as I have been sleeping through it, I don’t know if it’s decreased. I guess I should record myself again and see what I hear, but I thought I’d put the issue out there for expert/experienced commentators.

CONCLUSIONS AND QUESTIONS: To summarize, I understood half of what I read in a zillion different threads on topics like “low AHI but I still feel terrible” or “clear airway events” but I somehow stumbled my way into understanding enough to get me to drop my EPR from 3 to 1. This made an incredible difference in how I felt and almost completely wiped out the clusters of Open Airway events that used to be clumped in the hour or two before my alarm was supposed to go off.

Why did the change in EPR make the clusters of Open Airway events mostly disappear? Given that the change in EPR made them disappear, does that tell us what was causing the Open Airway events? If so, can someone please explain it to me? I’m delighted at the change but know that, if I don’t understand it, I won’t be able to deal with any similar issues on a another machine (in the future) or make any further progress on pushing back against brain fog, lassitude, and the other drains on consciousness.

I should probably keep experimenting. Raise minimum pressure? Keep minimum pressure the same but eliminate EPR? Your thoughtful input is requested.

Thanks to all who take the time to read this and offer ideas/suggestions/questions/comments.
August 17 EPR at 3.png
August 17 EPR at 3.png (134.67 KiB) Viewed 1572 times
August 18 EPR at 1.png
August 18 EPR at 1.png (136.6 KiB) Viewed 1572 times
at home sleep study results.png
at home sleep study results.png (255.05 KiB) Viewed 1572 times

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zonker
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by zonker » Mon Sep 20, 2021 10:02 pm

albigensian wrote:
Mon Sep 20, 2021 9:23 pm
Can you help me to understand why decreasing EPR has changed my life?

simply put, by decreasing your epr, you have effectively INCREASED your minimum pressure. and that's what you needed to vanquish those events making up your ahi.
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by palerider » Mon Sep 20, 2021 10:11 pm

It's too late at the moment to read that wall of text, but I picked out a couple of highlights.

EPR *decreases* the EPAP, so by lowering EPR from 3 to 1, you *raised* the lower pressure (which is the important one) by 2.

Add to this that the machine won't go below 4, so until the machine got the pressure up over 7, you were still stuck at 4 in between breaths.

Additionally, the extra ventilation that EPR causes can, for a small percentage of people, can induce centrals, and you may be one of those people.

Based on the one "after" chart, if I were you, I'd work my way up to a min pressure of 8.

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GrumpyHere
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by GrumpyHere » Mon Sep 20, 2021 10:29 pm

Your median pressure went from 8.86 to 9.52
Your median EPAP went to 5.86 to 8.52

You could had achieved the same end by using a higher minimum pressure instead of lowering the EPR. If you prefer the feel of higher EPR, then raise your minimum pressure.

From my understanding of what I read here, on the ResMed AutoSet it is not a bad idea to change the minimum pressure to a little bit below the median pressure shown in OSCAR when dealing with OSA.
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palerider
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by palerider » Tue Sep 21, 2021 7:10 am

GrumpyHere wrote:
Mon Sep 20, 2021 10:29 pm
From my understanding of what I read here, on the ResMed AutoSet it is not a bad idea to change the minimum pressure to a little bit below the median pressure shown in OSCAR when dealing with OSA.
It's not a "bad" idea, but it's better to evaluate the pressure curve.

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albigensian
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by albigensian » Tue Sep 21, 2021 10:54 am

Thanks to all who commented.

Here is more data at different settings.

I raised minimum pressure to 7 and put EPR back at 3 which, I think, is in line with the main suggestions. I had a poor night of sleep with more obstructive apneas than clear airway events. I was foggy and stupefied this morning and that fog has not lifted after several hours. I didn't get much quality sleep after that 7:30 awakening, and I think that my sleep was thin through the night. I had a nagging headache that was noticeable from 7:30 onwards. (Screenshot attached.)

I am particularly puzzled by the increase in obstructive apneas. Maybe they are connected to eating a food to which I have had an intolerance (i.e., which has increased inflammation under some circumstances). It's hard to say. Last night is only one night, of course, and I'll try the same settings again tonight.

Palerider, can you explain what you mean by looking at the pressure curve? What is the pressure curve and what would we be looking for/at? I assume that it is what is shown on the "pressure" section of OSCAR. I don't know how to interpret a pressure curve. The guide to OSCAR tells me what a pressure curve is but not what it can tell us.
raising min to 7 and EPR to 3.png
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by Julie » Tue Sep 21, 2021 11:06 am

By keeping EPR at 3, you're lowering the min. pressure of 7 to 6 at best, if not less and I'd either lower the EPR or raise min. pressure more... that's how it works.

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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by CorgiWalker » Tue Sep 21, 2021 12:37 pm

My breathing got out of synch with EPR. My episodes decreased quite a bit, when I turned EPR off. I think Pugsy helped me with this last year.

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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by Julie » Tue Sep 21, 2021 12:41 pm

Turn EPR to 1 or 2 at most if any at all.

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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by chunkyfrog » Tue Sep 21, 2021 1:31 pm

One of the best things about full data is that we can customize our therapy
to best fit our needs; as our requirements are all different;
and clinicians cannot do it for a few, much less everyone.
Encrypting or withholding this essential data is the worst thing
a manufacturer can possibly do to the patient.
Such a choice should disqualify that company from selling their product.

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albigensian
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by albigensian » Tue Sep 21, 2021 3:28 pm

Thanks, Juli and CorgieWalker, for encouraging me to continue to raise minimum pressure. CorgieWalker, is there a thread on Cpaptalk in which Pudgie worked with you? If so, I'd appreciate a link to it.

albigensian
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by albigensian » Tue Sep 21, 2021 3:31 pm

palerider wrote:
Mon Sep 20, 2021 10:11 pm
It's too late at the moment to read that wall of text
Sorry for all of the narrative! I wanted to provide as much info as I could so that anyone who wanted to offer comments would have as much info as I could pull together. I have seen so many posts started by folks who don't provide even the most basic of details that I probably over-reacted and flooded you with details. Just ignore what isn't useful, of course. I'm still too much of a newbie to know what the more experienced folks need to be able to offer advice....

albigensian
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by albigensian » Tue Sep 21, 2021 3:32 pm

palerider wrote:
Tue Sep 21, 2021 7:10 am
GrumpyHere wrote:
Mon Sep 20, 2021 10:29 pm
From my understanding of what I read here, on the ResMed AutoSet it is not a bad idea to change the minimum pressure to a little bit below the median pressure shown in OSCAR when dealing with OSA.
It's not a "bad" idea, but it's better to evaluate the pressure curve.
I just learned how to reply with quotes! So, Palerider, would you please coach me as to how to evaluate the pressure curve? If you need more data to evaluate the pressure curve (whatever it is), just let me know. Thanks!

albigensian
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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by albigensian » Tue Sep 21, 2021 3:34 pm

chunkyfrog wrote:
Tue Sep 21, 2021 1:31 pm
One of the best things about full data is that we can customize our therapy
to best fit our needs; as our requirements are all different;
and clinicians cannot do it for a few, much less everyone.
Encrypting or withholding this essential data is the worst thing
a manufacturer can possibly do to the patient.
Such a choice should disqualify that company from selling their product.
So true, so true -- but what should we do about doctors who won't look at all of the data that is available? That's what has me currently tearing out my hair. "None so blind as those who would not see..." and etcetera. No DME tech will approach the data and I've been to two MD's who won't deal with it, either....

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Re: Why did dropping my EPR affect my brain fog, lack of energy, etc.?

Post by zonker » Tue Sep 21, 2021 3:41 pm

albigensian wrote:
Tue Sep 21, 2021 3:34 pm
chunkyfrog wrote:
Tue Sep 21, 2021 1:31 pm
One of the best things about full data is that we can customize our therapy
to best fit our needs; as our requirements are all different;
and clinicians cannot do it for a few, much less everyone.
Encrypting or withholding this essential data is the worst thing
a manufacturer can possibly do to the patient.
Such a choice should disqualify that company from selling their product.
So true, so true -- but what should we do about doctors who won't look at all of the data that is available?
this may sound like a smartass answer, but mostly we on the forum DON'T. there are just too many doctors out there who don't care about data. they seem to feel that they have done their job by merely prescribing the machine and wash their hands of the rest.

so, we take care of ourselves with the help of others on the forum. we monitor our own data via oscar and make changes in the settings ourselves.

so far, this method seems to be working for all that try it, myself included.
people say i'm self absorbed.
but that's enough about them.
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