Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
Doce
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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Thu Aug 01, 2019 8:48 pm

Miss Emerita wrote:
Thu Aug 01, 2019 2:43 pm
I see on the web that alprazolam is fairly long-acting (11-20 hours). You might ask your doctor about using a shorter-acting bensodiazepine drug to help you sleep better. Again from the web, here are the versions that are especially recommended for sleep:

Estazolam (Prosom), flurazepam (Dalmane), quazepam (Doral), temazepam (Restoril), and triazolam (Halcion) are used for insomnia or trouble sleeping.

You might also talk with the doctor about the dosage that would be appropriate to address sleep problems. It might be different from what would address anxiety problems.
Thank you for the information. I'll bring that up with my doctor on the next appointment.



Update:
My follow up with the sleep doctor was last week. It went...okay. I was a little disappointed to say the least as the actual doctor was unable to see me, and I ended up meeting with the nurse practitioner . The entire visit was basically them plugging in my SD card, and telling me, "Your ideal pressure is 7". The visit was supposed to be discussing if CPAP is helping me, if the doctor thinks I should continue CPAP, review SOCAR data, and discuss if I have UARS. When I mentioned UARS, the nurse practitioner either didn't want to talk about it with me or didn't know much about it because the conversation was not explored.

Anyways, I have upped my pressure to 7.2 and it seems to be doing alright. Here is a screenshot from last night's OSCAR data. I also took an alprazolam for to help me sleep as I have maintenance insomnia. One of the things that has helped me be more compliant with the CPAP is to wear ear plugs. I am such a light sleeper that I noticed I'd be in a very light stage of sleep, as if my body was on guard, because of the noise from the mask, preventing me from obtaining a deeper sleep.

And another side note, as I sit here and type this, and for about the last 4 hours, I have not felt sleepy. I am actually feeling pretty good even though I was sleepy all day earlier and almost nodded off at work a couple of times. I don't know if this has something to do with the fatigue that I am experiencing possibly having any link to my circadian rhythm. Even though I have a consistent bedtime and wake time,I am always more tired throughout the day when I wake up at 645am compared to if i were to stay up later and sleep in until 8/9am. Maybe my DNA is a natural night owl with a very stubborn circadian rhythm no matter how consistent I am with my sleep schedule. \

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Doce
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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Wed Aug 14, 2019 5:04 pm

I’m becoming more adjusted to sleeping with the mask on at night. It’s been about 3 months now of using it, but I’m noticing there are times I’m even more tired when I use it versus not. I’ve read it’s normal to be even more tired as someone gets used to wearing them mask, but I am use to it but having most CPAP nights leaving me even more tired.

For instance, last night I thought I had a better sleep than usual upon waking up. I seemed to of had less brain fog during most of the day. Even my Fitbit showed more deep sleep and less notches of red which indicate arousals, but around 2pm I became so sleepy with a sleep attack and brain fog and still am.

Is this normal or is there something I should be looking out for or changing to help not be as tired when using therapy? Thank you.

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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by BornInChicago » Wed Aug 14, 2019 10:46 pm

Recently I discovered that if I waited until I was really tired, like even 3am, and then sleep only six hours I would feel perky all day.

If I went to bed too early, I'd not get the deep sleep needed in those critical first sleep cycles of the night.

I am retired and so can get up when I want to. Thank goodness.

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Doce
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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Mon Aug 19, 2019 8:42 pm

BornInChicago wrote:
Wed Aug 14, 2019 10:46 pm
Recently I discovered that if I waited until I was really tired, like even 3am, and then sleep only six hours I would feel perky all day.

If I went to bed too early, I'd not get the deep sleep needed in those critical first sleep cycles of the night.

I am retired and so can get up when I want to. Thank goodness.
Isn't it interesting how the body can feel so different based on the time going to sleep and the amount of sleep. I am glad you were able to find some relief!


I went though past data and noticed a trend over the months where it seems that if I raise my minimum pressure, my average pressure always increases. For instance, if I set my pressure at 5, it would hover between around 5.5 and 6.5 and occasionally rise to 8-9. When raising the pressure to 7.2, it would do the same correlation, hovering between 7.8 to 8.5 and occasionally jump to 10-10.5. It seems I am chasing a pressure that needs to be higher and higher.

If i do have UARS, I should see how a higher pressure makes me feel since the past few months haven't helped much with my fatigue and energy and UARS patients need to focus more on how the feel and not AHI numbers. My pressure was raised to 8.8 which seemed to help me get a better sleep even though I almost feel asleep a couple of times today but the OSCAR data looked interesting.

There were less fake central apenas (arousals) which makes me wonder if the majority of the previous ones were due to some sort of breathing disturbance waking me up. It seems that even with a pressure of 8.8, there are frequent flow limitations and a couple of apneas. This makes me question if the pressure needs to be even higher, but of course, I will ride this pressure at 8.8 for a while to see the data and how I feel before any changes.

What are your thoughts about the pressure and the data?
Thank you.
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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Sat Nov 14, 2020 2:15 pm

I'm back on my third attempt at trying PAP therapy and so far it's going well. What's making this attempt better is that I have a mask that is comfortable and fits well, and I have dialed in the comfort settings such as the heated house and humidity levels.

Help is needed... It seems that upon reviewing OSCAR data, I always have 2-5 true central apneas a night. Is this a problem and is there a way I can reduce them? The three sleep studies I had did not mention any central apneas so I know it's caused by the PAP therapy. Also, I have several fake central apenas that I noticed from the start of PAP therapy because of the erratic breathing before the central apneas flagged as as explained in one of the videos linked on here. My questions regarding these fake apneas is if it someone can take a closer look at the data and see if the arousal before the fake central apnea was due to some sort of sleep disordered breathing or is if it looks to be a spontaneous arousal.

I suspect my sleepiness and fatigue issues are only partly due to sleep disordered breathing, but the sleep studies haven't found anything except many, many spontaneous arousals, which as we know, can wreak havoc on the sleep architecture.

Attached are several screenshots from OSCAR from the past two nights with examples of what I am referring to.
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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Sat Nov 14, 2020 2:19 pm

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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Sat Nov 14, 2020 2:23 pm

Real centrals

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Julie
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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Julie » Sat Nov 14, 2020 2:30 pm

You do understand that reguliar C or Apap do not treat central apnea?

Doce
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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Sat Nov 14, 2020 2:34 pm

Julie wrote:
Sat Nov 14, 2020 2:30 pm
You do understand that reguliar C or Apap do not treat central apnea?
Yes, I understand that.

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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Dog Slobber » Sat Nov 14, 2020 3:07 pm

Doce wrote:
Sat Nov 14, 2020 2:15 pm
It seems that upon reviewing OSCAR data, I always have 2-5 true central apneas a night. Is this a problem and is there a way I can reduce them?
2 - 5 true centrals a night really isn't much of a problem. You can try reducing or turning off EPR. That works for some.

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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Pugsy » Sat Nov 14, 2020 4:36 pm

It's normal to have a handful of real asleep centrals during the night. Not a big deal.
Turning off EPR will only help if EPR is causing the centrals and if it was you would have a lot more real asleep centrals than you are having. I doubt EPR is a trigger for your centrals but you could maybe try turning off EPR to see if it changes anything or not. There is no urgent need though and it really is the only thing you could do with this machine even if you were having a lot of centrals.

I would shrug my shoulders and move on. 2 to 5 centrals over the entire night....normal and to be expected and not a problem.

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Doce
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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Sat Nov 14, 2020 11:32 pm

Thank you for the posts. I am glad to know 2-5 centrals are common and nothing to worry about. I will continue on with PAP therapy and fingers crossed I see some relief after awhile.

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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Sat Dec 26, 2020 1:00 pm

Still continuing this journey and have not seen improvement or felt better. Had another sleep study to see if PLMD is the cause of feeling miserable each day but no PLMD was found.

At this point I’m questioning again if I should still pursue PAP therapy or back to the drawing board. I feel like after 3 PSG sleep studies, the key to my terrible sleep has to be hidden in there somewhere. I wish I could have a weeks worth of sleep studies back to back at the Mayo Clinic. It’s pretty disheartening and I feel like throwing on the towel and accepting this is how I’ll always feel.

Nonetheless, here are the results from my recent sleep study.



As mentioned from my sleep study:

Respiratory Events:
-AHI 4.6
-AHI during REM 9.7
-Obstructive events: 12
-Hypopnea events: 1
-RERAS: 8
-Supine: 3 obstructive. 5 RERAS
-Prone: 0
-Left side: 2 obstructive.
-Right side: 7 obstructive. 1 hypopneas. 3 RERAS

-Sleep efficiency 66.1%
-Sleep spent in rem 13.5%
-REM latency of 182.5 minutes
-No PLMD observed
-61 spontaneous arousals which equates to 13.3 per hour

-mean SpO2 of 95.8%, minimum SpO2 of 92.0%

The things that stand out to me in the studies are the high number of spontaneous arousals (which unfortunately, no idea for the cause as they are spontaneous) and the poor sleep efficiency. In my opinion, there’s a lot of sleep fragmentation going on in both sleep studies which could explain the reason for feeling miserable, but there’s no idea for what’s causing it.

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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Miss Emerita » Sat Dec 26, 2020 1:25 pm

This must be very frustrating, Doce.

Did you ever have a chance to follow up on your low vitamin D, low-ish iron, and hypoglycemia? More information about hypoglycemia here, from a trusted web site:

https://www.mayoclinic.org/diseases-con ... c-20373685

I see that fatigue can be a symptom. Fatigue and weakness can be symptoms of iron deficiency:

https://www.mayoclinic.org/diseases-con ... c-20355034

And symptoms of low vitamin D can also include fatigue and weakness:

https://my.clevelandclinic.org/health/a ... deficiency

Sometimes one has to push the doctor to follow up, especially when the symptoms are subjective, like fatigue and weakness. And possibly you'd be fine if you had only one of these lab results but not so fine with multiple factors.

So that's one avenue to explore. Another might be cognitive behavioral therapy for insomnia, which can help some people consolidate their sleep. More information here:

https://stanfordhealthcare.org/medical- ... omnia.html

I really hope something is going to help you get the rest you need.
Oscar software is available at https://www.sleepfiles.com/OSCAR/

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Re: Making progress or should I discontinue APAP? Trying to figure out if apnea is the cause of my daily exhaustion

Post by Doce » Sat Mar 06, 2021 3:44 pm

Hey everyone,

This spring I have physical to do lab work for key components that can relate to my symptoms. In the meantime, I started pap again after another visit with the sleep doctor last month. This go around I am doing it differently - using it every night no matter how much more tired it makes me. Also, giving it a full 6 weeks, everyday use, as recommended by my doctor. Hopefully the "you may feel worse before you feel better" saying is true. If I still feel as though PAP therapy is not helping, I may elect to have surgery to correct a deviated septum and turbinate reduction to help with nasal breathing at night.

For about two weeks straight, I've been using the machine every day. It's been pretty miserable trying to adjust to it again with increased insomnia and sleep disturbances, but I noticed the last 2-3 nights I am getting more use to it - thankfully. This is the first time out of trial runs I’ve stuck with it for 2 weeks straight.

Here are some oscar charts from a couple of days during the first week and the last two days. There is some peculiar data that I noticed and have several questions. I did change the settings to a fixed pressure, but not all nights (3/2) on the fixed pressure looked even remotely close to 3/4 and 3/5.

The OSCAR data was very eye opening. It makes me think that apnea really could be the majority cause of my excessive sleepiness, fatigue, brain fog, and memory issues for a decade now. The last two nights I still remembered waking up a few times tossing and turning, but it felt like I was able to sleep through the majority of each night with it. Those two nights, I do recall having vivid dreams that seemed to last a long time. During the day, my usually symptoms remained relatively the same (sleepiness, fatigue, etc.).

When I reviewed the data in OSCAR from the last two nights, I noticed my apnea is the worst I've ever seen it out of all of times I've used the machine the last 2.5 years on and off... even with the same settings previously dialed in. There really isn’t much that I’ve done differently the past couple of nights… not taking any medication, no weight changes, no different sleep positions, no new pillows, etc.
Here are my questions. What could be the cause of the sudden excessive apnea? I've never seen the data look so rough before... Could it be that my body is finally adjusting to PAP therapy by relaxing more at night and the apneas are starting to appear more clearly? My analysis of the data is that I need to raise the minimum pressure, reduce EPR, switch back to APAP mode, or all three.

In your opinion, what would be the best way to proceed?

(see next post for the rough apnea nights 3/4 and 3/5)
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