Help Interpreting Sleepyhead & Sleepy Study Data

[modernsportscar]

Short summary: EDS for 5 years, worsened in last 24 months. Need help interpreting data and mitigating short and long-term health effects.

Symptoms: Most days, crippling EDS (excessive daytime sleepiness), mental fog, completely inability to focus, completely flat emotionally, zero libido, zero natural interest in doing anything most of the time. Even the simplest tasks (like making this post) seem like climbing a mountain (classic depression symptoms).

Longer summary: I've been extremely tired (EDS) for the last 7 years, and it's worsened sharply in the last 2 years. The last 12 months it's been so bad that it's almost impossible to work, and has resulted in major depression. I've never considered suicide, nor am I even sad or hopeless--super ambitious and optimistic and extremely motivated to address this issue. That said, the effects are bad enough for me that every day is complete misery. I own my own business and have four children, so 'fixing this' is bigger than just my own sense of well-being.

Mental Health context: 'Diagnosed' with anxiety about 7 years ago. Obviously huge overlap with anxiety, depression, and EDS/fatigue. Chicken/egg, /cause/effect, etc. Does depression fragment my sleep and deepen depression, or do I have UARS, which can cause both anxiety and depression?

Anatomical Factors
6', 170 lbs, long neck, high narrow pallet, narrow throat, life-long mouth breather (that is, it's most natural to breath through my mouth, but I work hard on oral posture, tongue position, etc., through the day and only mouth breath when I do it subconsciously or during rigorous exercise). ENT says I am Mallampati 'Stage 3'--recommends UPP surgery, but wants me to go to Stanford University--suggests I may need full-on maxillofacial surgery, which my ortho also recommended years ago when I had braces.

My pallet is extremely high/narrow:



I have the classic 'adenoid face'--an example of that below.



I've had 3 sleep studies done--one home, and two at this sleep clinic. https://nortonhealthcare.com/pages/nort ... enter.aspx Bought a mandibular adjustment device about a year ago, which doesn't seem to do anything.
viewtopic.php?f=1&t=115246&p=1117133#p1117133

First study I couldn't sleep--felt like I never did, though obviously data shows I was asleep for at least a few hours, though little/none on my back. Doc went over results by saying 'you don't have apnea, try cognitive behavioral therapy for your EDS and/or another story with more supine sleep.

Study 1


Tried CBT, hot yoga, meditation, mindfulness, no sugar diets, sleep hygiene, etc., still tired. Went back for home study, which the data was ruined on somehow. Then did second in-lab study. Slept a little 'better' (longer), which you can see below.

Study 2



Low AHI + the dreaded 'spontaneous arousals' (i.e., who knows why you woke up, you just did).

After 6 months of experimenting with a variety of depression medication with mixed results, I started on sleep machine (DreamStation AutoBipap with heated hose/humidifier) in February. I've slept a full 8 hours with little to no AHI around 10 nights now (the study below was the highest AHI results I had, which is why I shared it first) and have noticed zero improvement. I slept a week without the machine, and the first few days I felt better than I had with the machine. I know it takes time, but it just makes no sense (to me, a layperson) how I could sleep a full night 10 times and feel exactly the same or worse, which always leads me back to wondering if my issue is pure depression and any 'UARS' is minor enough as to be superseded by depression and thus a relative non-issue.

Here is one night's data, fixed Bipap (15 and 7).





I can post data for nights I've slept in auto mode, which has resulted in AHIs at or around 0! But again, I feel ZERO improvement even sleeping three consecutive nights with ZERO AHI.

I'm confused. The MAD didn't help, the machine doesn't seem to be helping. Wellbutrin has yielded improvements the first two weeks I was on it, then the improvement faded (I've now been on it almost four weeks). After some Googling, it seems this is a 'honeymood' effect which is common and actually a good sign that after 6-8 weeks it should help.

I guess the purpose of this post is to help interpret data from my machine, and get advice from the community on what they might consider if they were in my shoes moving forward. My 'issue' is clearly a kind of Major Depressive Disorder, which itself can yield these exact symptoms. Reiterating though, I'm trying to continue to separate cause from effect--in this case by looking closely at data.

I'm hoping to visit Stanford Sleep Center in May.

[Pugsy]

Some questions.

1...Where or how was it determined you should use this setting showing on this report? EPAP 7.5 IPAP of 15.0 with PS of 7.5?
The bulk of your AHI is CA (clear airway) or what we call centrals and that PS is the first culprit I would suspect. That PS of 7.5 isn't helping and likely is a big part of the problem with this particular AHI.

2...What meds besides the Welbutrin are you taking?

3...Can you post one of the night's report where you used auto mode and got AHI 0.0?

[modernsportscar]

1. 15 & 7.5 was a baseline 'guess' based on reading others with UARS.

2. 7.5 mg of Citalopram is the only thing I take consistently. I have Provigil and Ritalin also prescribed, but I don't take them every single day, mainly because they stop working when I do.

3. See below.

[modernsportscar]

Here's one night where I fell asleep on couch, went to bed and slept with machine for a couple of hours and, and in my infinite half-asleep wisdom, decided I should take it off.

[Pugsy]

Okay...I don't know where you came up in your reading about using that much pressure support all night was the way to go but it wasn't. Now sometimes more PS can be used for UARS but that's a sporadic intermittent higher PS with a totally different machine.
Ditch the high PS..don't ever go over 5 PS in any of your experiments.
If it were me this is what I might try if I wanted to maybe try killing UARS (and I am not so sure that is what you are having)

Go back to auto mode.
Minimum EPAP 8 or 9
PS min 3
PS max 5
Maximum IPAP 25 I don't think you will ever come remotely close to the 25 and thus it really doesn't matter.

UARS usually means more EPAP is needed to better hold the airway open not god awfully high IPAP unless your EPAP is a lot higher too.
Your PS of 7.5 isn't a good thing unless you have some sort of restrictive lung disease where you need encouragement to take a big deep breath. Otherwise it can harm more than it helps.

Read up on the side effects of your Citalopram
https://en.wikipedia.org/wiki/Citalopram
It belongs to a classification of drugs called SSRIs and they are all notorious for causing problems sleeping and with sleep cycles.
Google "SSRIs and sleep" and start reading.
So they mess with sleep and also make you feel like crap during the day from fatigue, drowsiness, etc.
I know it makes no sense that a medication can cause drowsiness and insomnia (especially sleep maintenance insomnia) but these meds will do that.

Now is your medication the sole cause of your problems...probably not but it sure isn't helping.

[palerider]

Some questions.

1...Where or how was it determined you should use this setting showing on this report? EPAP 7.5 IPAP of 15.0 with PS of 7.5?
The bulk of your AHI is CA (clear airway) or what we call centrals and that PS is the first culprit I would suspect. That PS of 7.5 isn't helping and likely is a big part of the problem with this particular AHI.

2...What meds besides the Welbutrin are you taking?

3...Can you post one of the night's report where you used auto mode and got AHI 0.0?

indeed, seconded... that 7.5 PS is going to push MANY people into central apnea. ugh..

added to that, what was the justification for giving you a bilevel machine, with such a low AHI in the first place....

sounds like someone's padding their pocket books.

[modernsportscar]

Go back to auto mode.
Minimum EPAP 8 or 9
PS min 3
PS max 5
Maximum IPAP 25 I don't think you will ever come remotely close to the 25 and thus it really doesn't matter.

Will do.

Read up on the side effects of your Citalopram
https://en.wikipedia.org/wiki/Citalopram
It belongs to a classification of drugs called SSRIs and they are all notorious for causing problems sleeping and with sleep cycles.
Google "SSRIs and sleep" and start reading.
So they mess with sleep and also make you feel like crap during the day from fatigue, drowsiness, etc.
I know it makes no sense that a medication can cause drowsiness and insomnia (especially sleep maintenance insomnia) but these meds will do that.
Now is your medication the sole cause of your problems...probably not but it sure isn't helping.

Citalopram was the first thing I looked at years ago. I stopped taking it and my anxiety skyrocketed--couldn't even function. EDS got worse, too. This was odd because I've never had a problem with anxiety in my life, but I took a job I shouldn't have and the bottom just dropped out for me. Super irrational/out of character for me kinda thing. Went back all the way up to 40 MG. I'm now down to 7.5 MG, and am slowly trailing off of it while taking the WB. I've gone on and off WB several times cold turkey with zero effect, and further WB is the only thing I'm certain has helped me. It's been at least ten years since I've woken up in the morning and not felt worse than when I went to bed.

I've spent years reading about this, and there are so many possibilities. SSRIs can indeed affect sleep architecture. So can depression, and that's the tough part. It's easy to equate meds with sleepy, but it's also possible some of those people are sleepy on Citalopram because of depression, which the Citalopram isn't helping with. And the anxiety/panic attacks I had last time after coming off were SO BAD. Again, which I've never had an issue with my entire life.

A few possibilities:

1. Depression, neurochemically, developed in my mid-30s. Both parents diagnosed with anxiety/depression. Mother extremely loud snorer, though refuses CPAP.
2. UARS, which I've always had, worsened in my mid-30s, causing anxiety. Both led to EDS/depression.
3. Citalopram/SSRI is ruining my sleep architecture.
4. Something else, or some combination of the above.

When sleep doctor said I had UARS, after doing some reading it a lot of things started to make sense. UARS (and other SBDs) can also apparently, negatively impact your central nervous system due to the constant arousals. This can cause anxiety, and both keep you from being well-rested, which can cause depression. Very narrow throat--choke easily on food. Huge adenoids. I've always had cold hands. Mouth breathing. All of my children sleep poorly/have similarly shaped mouths/etc. Every picture of my from my childhood I have dark circles under my eyes. Report cards noted I was 'often sleepy' in class. It's easy to fall into confirmation bias here, but UARS seemed more likely than 'standalone' depression and other alternatives. I hope like hell it isn't UARS, which is hard to treat and a life-long issue. I PRAY it's something as simple as the SSRI. I can be off that in a 6-8 weeks, though, again--the last time I did that, the panic attacks/anxiety were unbearable, and lasted for months. I'm definitely 'wired' funny--very sensitive, conscientious, reflective, emotional, etc. Makes me a great writer, but everything else not so much.

[modernsportscar]

added to that, what was the justification for giving you a bilevel machine, with such a low AHI in the first place...

I bought it with my own money. Doctor said use straight CPAP, but insurance wouldn't pay because of low AHI/no apnea. Most of what I read about UARS said bilevel can help, and I figured worst-case, I could run the machine in straight CPAP anyway.

[Pugsy]

I understand the meds/side effect issues and how you kinda are damned if you do and damned if you don't with some of them.
We do the best we can though.

I don't know if my ideas for a suggestion will help but they won't hurt you like the settings with such a high PS could maybe be doing a bit of hurting. I am pretty sure that the centrals/CAs you were seeing was from the PS being so high.
That much PS makes us sort of hyperventilate and we blow off carbon dioxide too soon and too much...so the carbon dioxide levels never get up to where they need to be to signal to the brain that it needs to breath...so the brain doesn't tell the body to breathe.
People often think it is lack of oxygen that is the trigger but it's really the level of carbon dioxide in the blood stream that the brain monitors and when it gets too high the brain sends the signals to breathe.

As you have probably realized UARS diagnosis is often more of a "rule out" diagnosis unless you actually have a sleep study with one of those PES things in your airway.
CPAP is still considered first choice for UARS therapy though...problem being is that the things the machine flags, OAs, hyponeas, etc aren't things that a person with UARS will necessarily have very many of.
The data the machine collects isn't particularly helpful for UARs patients. Even the Flow limitation data that is collected doesn't necessarily correlate all that well to UARS flow limitations.
We do the best we can though. You aren't going to get much help in evaluating your therapy with the software reports. Your AHI isn't all that remarkable to start with so it's not going to be all that remarkable now.

What you are going to have to do is come up with some way to evaluate how you feel subjectively at various pressure settings and you have to be willing to devote considerable time to any changes you might try. Keep a log on your settings and how you feel and how many hours you sleep and how many wake ups you think you might be having. One thing you can do that the software might help with is if you wake up during the night just reach over and turn the machine off and then right back on again. This off/on will cause a break in therapy and you can see if you woke up and how many times...and what was the breathing doing right before that wake up.

[modernsportscar]

This is extremely helpful.

I have been keeping an 'EDS journal' for years now. Used to be a spreadsheet looking at all factors--blue light, stress, sleeping position, caffeine intake, weather, season, etc. Now I simply write down 4-6 data points each night before bed. To this, I'll add what you suggested. I am going to try to taper off Citalopram, but I'm going to do so sloooowly, and stay on WB while I do so.

For now, in your best layperson opinion, should I just leave the machine in auto mode with settings you suggested above and come back in a couple of weeks and post screenshots and see how I feel, etc? You mentioned various pressure settings--what would your advice be there as far as realizing that kind of experimentation?

[palerider]

come back in a couple of weeks

couple of *DAYS*... see if you're in the right neighborhood for settings or if something needs to be changed soon.

[Pugsy]

Be aware that Welbutrin also mess with sleep but go about the med changing slowly and best under doctor's supervision.

Let us at least see a couple of typical reports at my pressure suggestions before you go long term with them.
While I doubt they will be hugely helpful I just want to make sure that nothing shows up that could maybe be a factor in the poor sleep quality.

Plus I want to make sure the Centrals stay away with lowering PS.

Like PR says "couple of days" and then if things look good you can continue. I based my ideas on what I saw in auto mode at lower settings and the fact that UARS typically needs a little higher EPAP and also made a WAG...wild ass guess. It's an educated WAG but still a WAG.

[modernsportscar]

WAGs are my favorite guesses.

[palerider]

WAGs are my favorite guesses.

Pugsy's are *experienced* WAGs

[jtravel]

WAGs are my favorite guesses.

If you have some experience with the subject then we would call it SWAGs (Scientific wild ass guess)