In need of therapy assistance ... long time lurker / OSA sufferer

So Dec 9 was essentially a repeat of Dec 8 except not so many sessions but still a truckload of FLs and arousals.
First session on the 9th....I stopped counting at 40 episodes of some sort of arousal breathing evidence. Some brief and some quite prolonged which made it hard to count but I tried to count new arousals and not so much the prolonged episodes.

Your OSA itself...is well treated. The majority of what little flagged events we see are false positives occurring during obvious arousal breathing.

Your sleep quality though....extremely fragmented with a LOT of arousals (you may or may not remember all of them)....
What I refer to as crappy sleep quality in general and it doesn't surprise me one bit you feel horrible.
Now is the crappy sleep the sole reason for the crappy feeling????? It's possible but I have my doubts because of many potential factors.

Off to read the sleep study report...which BTW after we are done here with it you might want to edit your post and remove the link because from a glance I see a lot of personal information showing. You don't want to leave that out there forever.

I no longer have Encore Pro on this computer to use to get Encore's flow rate graph...wish I did but I suspect if I did it would look a lot like this below. It makes it really easy to spot arousal breathing. This is a guy who didn't have OSA but had crappy sleep and this is one of his good reports. I can't seem to locate the example of the really crappy sleep. I will keep looking.

Pugsy wrote: ↑

Sat Dec 10, 2022 11:55 am

Last night Dec 9....one obvious break in therapy.
Did you sleep better last night? Feel any better at all?

Off to zoom in on stuff.

Last night was average nights rest for me. I remember waking up and checking the time and taking a while (but not hours) to fall back asleep - some mild dreaming and feeling of "rest." I woke up around 5:30 and then forced myself back to sleep for another hour or so. (bad habit of doing that...)

Today is also average for me - it's around 1:30 pm and I am in desperate need of a nap. I am not falling asleep in traffic but certainly not that well rested, either.

Do you have anything else with that sleep study report?

I can't find any mention of arousals of any kind and that's the one thing I really wanted to see...

and how in the hell do they come up with pulse ox exceeding 100%??????

Do you have anything else like some graphs or something that mentions arousals...either respiratory related or spontaneous???

Pugsy wrote: ↑

Sat Dec 10, 2022 12:22 pm

So Dec 9 was essentially a repeat of Dec 8 except not so many sessions but still a truckload of FLs and arousals.
First session on the 9th....I stopped counting at 40 episodes of some sort of arousal breathing evidence. Some brief and some quite prolonged which made it hard to count but I tried to count new arousals and not so much the prolonged episodes.

Your OSA itself...is well treated. The majority of what little flagged events we see are false positives occurring during obvious arousal breathing.

Your sleep quality though....extremely fragmented with a LOT of arousals (you may or may not remember all of them)....
What I refer to as crappy sleep quality in general and it doesn't surprise me one bit you feel horrible.
Now is the crappy sleep the sole reason for the crappy feeling????? It's possible but I have my doubts because of many potential factors.

Off to read the sleep study report...which BTW after we are done here with it you might want to edit your post and remove the link because from a glance I see a lot of personal information showing. You don't want to leave that out there forever.

I no longer have Encore Pro on this computer to use to get Encore's flow rate graph...wish I did but I suspect if I did it would look a lot like this below. It makes it really easy to spot arousal breathing. This is a guy who didn't have OSA but had crappy sleep and this is one of his good reports. I can't seem to locate the example of the really crappy sleep. I will keep looking.

This is very very interesting to me - at the very least it's more validating than when a sleep doctor looks at your AHI and shrugs their shoulders. It's not "in my head" as has been subtly suggested to me before. If the sleep quality is what i need to address; I can go in that direction.

Thank you for doing this for me - I sincerely appreciate it.

Pugsy wrote: ↑

Sat Dec 10, 2022 12:37 pm

Do you have anything else with that sleep study report?

I can't find any mention of arousals of any kind and that's the one thing I really wanted to see...

and how in the hell do they come up with pulse ox exceeding 100%??????

Do you have anything else like some graphs or something that mentions arousals...either respiratory related or spontaneous???

This is the only other piece of information that I see in my file. No graphs.

https://www.dropbox.com/s/c4qbd612ecptm5a/LM.pdf?dl=0

Sadly healthcare in that state was abysmal ... And that one sleep center was my only option under that insurer within 100 miles. It's part of the reason I was constantly tinkering w/ my machine and feeling deep down in my gut that improper treatment was at least a component of my health concerns.

I no longer live there and as soon as I can get access to an updated titration / sleep study report; I will send it over or start a new thread.

Pugsy wrote: ↑

Sat Dec 10, 2022 11:47 am

There won't be any useful graphs on the ResMed machine since you didn't have a SD card in it. The machine only stores the limited summary data and it's the graphs we need. Probably going to ask you to use it again....not what you wanted to hear but will talk about that later.

That's not a concern - I already had a feeling you were going to ask me to try it again for a few nights.

The SD Card should be here tomorrow; nasal congestion should be gone by then so I can get an accurate sample off the ResMed for a few days. (I have a full face mask here somewhere but have never tried sleeping with it)

To be clear I don't know how much your unwanted symptoms are related to overall sleep quality but since it is a possibility....have to consider it.
I don't know what caused those arousals.....I couldn't see blatant overt evidence that they are respiratory or airway related from the data we have available. What with all the Flow Limitations seen...it's really difficult. Are the Fls causing arousals or are the arousals spontaneous which means we don't know the cause but we know not respiratory/airway related.

This is why I was wanting to see arousal numbers mentioned on the report. Wanted to get an idea if they spotted a truckload of arousals during the sleep study because you sure have them here.

Remember that picture of all the FL example I showed you above?? Your breathing is just chocked full of FLs.

Click on the image so it enlarges so you can see each rounded breath....this is from my report....and I rarely have FLs and none are shown here. This is nice boring asleep breathing without any airway FLs.



Now here is yours....note that not many are nice and rounded....most are just distorted looking...that means flow limited and while not all flow limitations disturb sleep quality they can cause disturbances and for that reason we pay attention to them. They are early warning signs of an impending airway tissue collapse....as long as they aren't from nasal congestion.

Lillypie345 wrote: ↑

Sat Dec 10, 2022 12:52 pm

This is the only other piece of information that I see in my file. No graphs.

Actually that does help a lot....it mentions RERAs which are Respiratory Event Related Arousals and there weren't any.
Would have been nice if they had also mentioned spontaneous arousals but they didn't.
If you ever do get another sleep study....make sure spontaneous arousals are reported on one way or the other.

BTW....0 RERAs...makes me really doubt a UARS diagnosis because with UARS people have a truckload of RERAs most of the time.

Right now I am leaning towards blaming the large numbers of arousal segments as spontaneous anyway.....for now.

When you do get the SD card....use OSCAR and get me that statistics page again so I can see what all settings you did try with the ResMed.
It will help me figure out what settings to offer to try.

Pugsy wrote: ↑

Sat Dec 10, 2022 1:11 pm

Lillypie345 wrote: ↑

Sat Dec 10, 2022 12:52 pm

This is the only other piece of information that I see in my file. No graphs.

Actually that does help a lot....it mentions RERAs which are Respiratory Event Related Arousals and there weren't any.
Would have been nice if they had also mentioned spontaneous arousals but they didn't.
If you ever do get another sleep study....make sure spontaneous arousals are reported on one way or the other.

BTW....0 RERAs...makes me really doubt a UARS diagnosis because with UARS people have a truckload of RERAs most of the time.

Right now I am leaning towards blaming the large numbers of arousal segments as spontaneous anyway.....for now.

When you do get the SD card....use OSCAR and get me that statistics page again so I can see what all settings you did try with the ResMed.
It will help me figure out what settings to offer to try.

THANK YOU SO MUCH. I will do that.

Miss Emerita wrote: ↑

Sat Dec 10, 2022 11:19 am

I hope tweaking your settings will help you. Because you might be affected by apnea or UARS plus something else, I just want to mention two areas you might want to explore with your doctor, if you haven't already: POTS, and autoimmune disease. Both have fatigue after exertion as symptoms.

+1

At 19 I woke up one day with hives. They lab tested me for everything under the planet. Accused me of cheating on strict food diets, thought I had scabies, bed bugs all kinds of blaming the victim. Suffered off and on for over 30 years finally one day a more knowledgable doctor tested me for the antibodies for autoimmunity they came back positive. Since that time have been diagnosed with several autoimmune issues the most notable being graves/hashimotos (yes, I have the antibodies for both) tho some doctors tell me its not possible, until I whip out my lab reports and then they insist on retesting me themselves.

In any case the thyroid was missed for so many years because the basic TSH was right where it should be. My cousin has the same issue with her labs showing normal until they search for the antibodies. Don't give up. Get to a doctor who specializes in auto immune issues and have them test for antibodies. I haven't had a single hive since they got me on the correct thyroid medication. Am still fatigued and plagued with other stuff but it really does help knowing there is a very real problem and its not all in my head like doctors tend to assume.

What (if anything) have you ever done to try to improve on sleep quality itself?
Medications?
Stricter sleep hygiene routine?

We can't glean sleep stages from the data we have available but with the number and duration of those arousals....I am betting that you aren't getting a nice normal mix of the sleep stages which is needed for the restorative powers of sleep to work their magic.

It is also entirely possible that there is some other problem also going on here....like chronic fatigue syndrome and no matter how good your sleep quality might be you would still feel like crap. There's nothing prohibiting a person from having more than one problem messing with sleep and how we feel.

But for now...we know that your sleep quality is in the toilet...can we fix it? Dunno but that won't stop us from at least trying.

Pugsy wrote: ↑

Sat Dec 10, 2022 3:41 pm

What (if anything) have you ever done to try to improve on sleep quality itself?
Medications?
Stricter sleep hygiene routine?

We can't glean sleep stages from the data we have available but with the number and duration of those arousals....I am betting that you aren't getting a nice normal mix of the sleep stages which is needed for the restorative powers of sleep to work their magic.

It is also entirely possible that there is some other problem also going on here....like chronic fatigue syndrome and no matter how good your sleep quality might be you would still feel like crap. There's nothing prohibiting a person from having more than one problem messing with sleep and how we feel.

But for now...we know that your sleep quality is in the toilet...can we fix it? Dunno but that won't stop us from at least trying.

I appreciate the insights - I have previously done CBT-I for insomnia so at first thought I like to think my sleep hygeine is fair. I sleep alone; in the dark; use the bed only for reading / sleeping, etc. No TV in the bedroom; etc.

However, when I consider it a bit more I acknowledge that I do have a few bad habits; including checking my phone before bed and not getting out of bed when I can't sleep. I also will lay around in the mornings for an extra hour or so after I let the dog in to snuggle. Occasionally; i will fall back asleep for an hour or so when that happens.

So yes - if changing these things might help I can definitely work on changing them!

I can divulge more about my sleep conditions in a moment - However, you just reminded me of something.

It was suggested (but not formally diagnosed) that I might be suffering from advanced sleep-wake phase disorder at one point during the CBT-I training. I kind of forgot about it as my condition has changed over time - but one of the primary complaints was that I would get EXTREMELY sleepy around 5 - 7 pm. (to the point where it felt like I was drugged - keeping my eyes open felt impossible) If I caved in and went to bed; I would pass out for a few hours and then be awake.

It will still occasionally happen to me here or there.

I'm not trying to muddy the waters as I know this is a sleep *apnea* board and I sincerely appreciate the helpfulness of everyone's interpretations and suggestions so far.

The CBT-I was a few years ago; and if recall I I bought some expensive blue light glasses that mimic sunshine in the retina and was told to take melatonin before bed.

I currently do not take any medications before bed unless I am desperate. Even meltaonin will keep me groggy throughout the next day; which defeats the purpose so I tend to skip them. I will take occasionally take magensium before bed.

https://sleepeducation.org/sleep-disord ... ake-phase/

Stuff like advanced sleep-wake phase disorder is really above my pay grade to deal with. Not an easy diagnosis to make and for sure not always easy to do anything about.

Pretty much what I do is see if I can spot a problem and then try to fix the problem in some fashion and hope that we can reduce whatever unwanted symptoms someone is having.

In your case it is fairly easy to spot the arousals, which are extremely numerous, and that many arousals means that there is a sleep quality issue which could potentially be responsible for your unwanted symptoms. Is it a guaranteed problem that is fixable in terms of reducing your unwanted symptoms???? Dunno to be honest but it is possible and when anything "is possible" I figure might as well try to fix it....if possible.

What do we have to lose in trying to improve on sleep quality and being able to reduce the arousals?

Your OSA is well treated but your overall sleep quality is in the toilet from some unknown reason. I really think that you are having a bunch of spontaneous arousals from something and it's messing with your sleep quality and thus messing with the restorative powers of sleep.

Sleeping pills (RX or OTC) come with their own baggage so not always a good option. Most RX sleeping pills are for dealing with sleep onset problems...insomnia issues at sleep onset. They do a good job helping people fall asleep but not so great of a job in terms of staying asleep. Even melatonin comes with some unwanted baggage and again melatonin is mainly for the falling asleep part and not the staying asleep part. I can't take melatonin at all...causes extreme vertigo within just a few minutes. If you look up the side effects from melatonin it has quite a list of some rather ugly side effects. It's not nearly as benign as a lot of people think it is.
Vertigo is a known side effect as is the next day grogginess you experienced. It's not really meant to be a long term sleeping pill anyway.

So what do we do with you??? We need to try to reduce the arousals to a more manageable number that is less likely to cause your unwanted symptoms. I will be honest...it's not an easy job and probably going to have a lot of trial and error experimenting.

Have you ever tried aroma therapy? Worth trying and it's cheap, easy and without harmful side effects.
https://www.researchgate.net/publicatio ... _and_Women
Yes a small study but a real actual study.
I would start with lavender myself. Gotta start somewhere and might get lucky.

Also...be more strict on yourself when it comes to just laying in bed for prolonged periods of time and not being able to sleep.
Don't do it.....one thing it makes it impossible to know if the arousals we are seeing that are prolonged on your reports are awake breathing irregularities or not. You've been through CBT therapy for insomnia......you know the rules. Try not to break them if at all possible.

Never tried a weighted blanket myself, but you might take a look at this:

https://aasm.org/study-shows-weighted-b ... -severity/

I think overall the scientific evidence for improvement of sleep is pretty slim, but wouldn't it be nice if this worked for you?

Lillypie345 wrote: ↑

Sun Dec 11, 2022 8:50 am

Pugsy wrote: ↑

Sat Dec 10, 2022 3:41 pm

What (if anything) have you ever done to try to improve on sleep quality itself?
Medications?
Stricter sleep hygiene routine?

We can't glean sleep stages from the data we have available but with the number and duration of those arousals....I am betting that you aren't getting a nice normal mix of the sleep stages which is needed for the restorative powers of sleep to work their magic.

It is also entirely possible that there is some other problem also going on here....like chronic fatigue syndrome and no matter how good your sleep quality might be you would still feel like crap. There's nothing prohibiting a person from having more than one problem messing with sleep and how we feel.

But for now...we know that your sleep quality is in the toilet...can we fix it? Dunno but that won't stop us from at least trying.

However, when I consider it a bit more I acknowledge that I do have a few bad habits; including checking my phone before bed and not getting out of bed when I can't sleep. I also will lay around in the mornings for an extra hour or so after I let the dog in to snuggle. Occasionally; i will fall back asleep for an hour or so when that happens.

So yes - if changing these things might help I can definitely work on changing them!

Do you have an iphone? If not i don’t know if androids have a similar setting. But- under display and brightness setting is night shift. This time can be set so light is softer and less of the light that keeps you awake. Looks yellowish to me. still workable tho.
hth