Managing OSA and IH

[ReverseBall]

Hi, I've been getting help from another forum in the past, but I thought I might post here as well because the other forum doesn't seem as active. I'm hoping to get some more diversity of opinion, and I'm also considering making some changes to my routine

Brief History:

I'm a guy in my early 20's, and I've been feeling exhausted for a long time. I had some endocrine related health concerns starting in my teens so there might be other factors going on, but the purpose of this is to manage my sleep as best as possible. I started the process about a year ago with a sleep study with MSLT. It appeared that I had mild sleep apnea with about 10 AHI overall, and 23 AHI during REM sleep. According to the MSLT I had idiopathic hypersomnia as well (though my doctor is hoping to retest because I wasn't on CPAP at the time). I sure felt exhausted enough. The doctor gave me a Philips Dreamstation, which I didn't have a great experience with. The doctor was pretty hands off - so long as AHI was ~5 they didn't care about much else. I didn't notice much improvement at all, as I was still exhausted. I slowly figured out the benefits of chin straps and mouth tape, but as I started seeking online help through the other forum, the members thought I had periodic/variable breathing and flow limitations with some slanted slopes on the flow graph. They told me the Dreamstation was a bad fit and suggested I switch to a Resmed Autoset 10 with EPR=3 and it made a pretty noticeable difference. The AHI's went under 2, the flow limitations seemed to go down, and I would feel pretty good for maybe an hour or two after waking up. My body felt like it was adjusting, as I started craving lots of sleep (10-12 hours per night) now that I was no longer choking awake/ woken up by dry mouth. But it feels like the benefits have plateaud at this point (4 months with Resmed), and I'm still really exhausted throughout most of the day. I still need a lot of naps (if I sleep whenever I get tired it can be up to several hours worth of naps throughout the day. I can force myself not to nap, but I feel totally incapacitated), and it is generally interfering with my work/ basic lifestyle necessities. I've tried armodafinil but that tended to make me jumpy, and my doctor is currently having me try Sunosi, which is making me feel a little naseous for lack of better word. The medications don't feel like they've made much of a difference. I've also been losing weight over the last year. I'm 6'0 tall, and have lost from 235 to 205lbs, which has helped reduce my pressure settings.

Current situation:

So currently, I am using the Resmed Autoset 10 every night, with a pressure range of 9-17. I use mouthtape as well as 2 chinstraps (I use the Knightsbridge with only the blue non-elastic strap. I don't like the Knightsbridge's elastic strap, so I use a separate elastic chin strap in conjunction with the Knightsbridge's non-elastic strap). I use either the Airfit P10 or the Swift FX (I prefer the nosepads on the P10, but I'm nervous about CO2 since it doesn't seem to vent much. I trained myself to get used to the Swift FX as well which vents better, but the nosepads don't conform as well). I get 8-11 hours of sleep nightly, but still get exhausted throughout the day. I'm currently debating on switching to a Resmed VAuto BiPap, which I bought at the same time as the Resmed Autoset 10 - I have been spending the last 4 months trying to get as much benefit out of the Autoset 10 as possible, but I'm just not sure how to interpret the Oscar graphs at a detailed level and how to determine whether I need more pressure relief. I'm trying to evaluate whether the VAuto would be an improvement. The Vauto is currently new, so I'd like to weigh the pros and cons before deciding use it. If there's a compelling reason to switch to it, I'll do so, but if not, I might sell it.

Oscar graphs:
These are graphs from a recent night. I also included a zoomed-in screenshot of a 3 minute period with some flow limit activity.

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2021_01_16_zoomed.PNG (132.8 KiB) Viewed 2984 times

Questions/Discussion:
So what do you all think of my current therapy? Is there still room for improvement? I'm hoping to better understand whether or not a BiPap's pressure relief would help my situation. But, as I mentioned, sleep apnea isn't my only problem. My sleep doctor thinks hypersomnia is a tough condition, and has told me to temper my expectations and that I'd likely never feel 100%, but I want to be doing all that I can. If there are any suggestions relating to hypersomnia, I'd love to hear them too. On the physical health side of things, I'm continuing to lose weight and improving my exercise routine, and it's helped a little.

[Pugsy]

You are using the AutoSet like a bilevel. Did you know that? Using EPR gives you bilevel.
Did you know that the only thing the AirCurve 10 VAuto bilevel will do differently than the AutoSet is let you use more than 3 PS and it can go to 25 cm and maybe a couple of other little comfort settings adjustments?

I doubt it will make a big difference but it is certainly worth trying since you say you already have a ResMed VAuto.

BTW the term BiPap is a Respironics marketing term and there is no ResMed BiPap. Optimal term is bilevel. ResMed Vauto Bipap doesn't tell me which machine you have.
Is it the ResMed S9 VAuto or the AirCurve 10 VAuto?

Do you take any medications of any kind? If so, what?
Do you drink alcohol?
Do you do recreational drugs?
Any other physical and mental health issues going on?

When we try to share too many graphs from OSCAR it ends up making all the graphs so much smaller that we really can't evaluate very well.
You don't need tidal volume or snore graphs....they are unremarkable anyway.

I can't tell a whole lot from your Flow rate graph but it does appear that there may be some arousal breathing right at the end of the graph. Do you wake often during the night?

[ReverseBall]

Hi, thanks for responding.

My Vauto machine is the AirCurve 10 Vauto (Ref 37212). Thank you for bringing up the ambiguity - I hope that clears it.

Yes, I am aware the AutoSet has functionality up to 3 PS, and I've been using EPR=3 with it. The members on the other forum said the EPR was essential because the Pressure Relief is what handles the flow limitations (IIRC). That article from Dr. Barry Krakow that mentioned how most people with sleep apnea also have flow limitations, and that a bilevel machine is typically preferred because most people need pressure relief of 4-9 (IIRC) - he mentioned some lucky people get away with pressure relief of 2-3. So yes, I'm aware that the purpose of the AirCurve 10 Vauto bilevel is that it allows for >3 PS, but that is essentially my core question. I'm wondering if there's any indications in my flow charts/Oscar data to tell whether I'm one of the people that only needs 3 PS, or if there's more improvement to be had by using a higher PS? I'm not financially hurting, but I would like to understand and weigh the possible benefits of starting to use the AirCurve 10 Vauto vs selling it. What would be the indication of whether the current PS is adequate or insufficient? Is there a flow chart pattern to look out for?

Medications:
I am on Testosterone Replacement Therapy (currently Testosterone 33 mg 3x per week and HCG 300IU 3x per week) because my levels have been low since I was a teenager. On TRT, my total and free testosterone levels are midrange, but my Estradiol is quite high. This is part of the reason I am losing weight, since TRT typically works better for people that are not fat.
I'm on Levoxyl 50mcg/day for hypothroidism. I am attempting to get off this medication because my levels were subclinical to begin with, and having discovered sleep apnea my doctors think that maybe thyroid supplementation was unnecessary, so we are tapering down.
I'm on Sunosi 112.5mg/day to help manage the daytime sleepiness.
No smoking, no alcohol, no recreational drugs.

As suggested above, I'm overweight. I've lost about 30lbs in the last year, and aiming to lose another 30. I have a tight hip that limits my physical activity somewhat, but this has been significantly improved with Physical Therapy. My biggest health concern is my overwhelming sleepiness, and this has some impact on mental health/ mood as well. For this, I see a doctor that does Transcranial Magnetic Stimulation. I've also noticed some degree of hair loss this past year, but I have no idea what is the cause. My dermatologist says my scalp looks healthy, and the pattern might indicate early male pattern baldness. I'm addressing it with Rogaine, and by cutting down on my dose of Testosterone with my urologist's approval.

Thank you for bringing up the issue with the graphs. I'll be sure to omit the tidal volume/ snore graphs from now on. When you say you can't tell from my flow rate graph, are you suggesting I should post a picture with less clutter? If so, attached is a less cluttered version of the same three minutes of the same night as the original post.

2021_01_16_zoomed_2.PNG (33.62 KiB) Viewed 2958 times

Or are you saying it's hard to tell because it simply looks ambiguous?

I notice myself waking up about 2 times on average during the night. Usually it's just to use the restroom. However my first month of switching to the Resmed I woke up randomly in the middle of the night more often, and wouldn't be able to fall asleep due to discomfort, which I've since gotten used to. It makes me wonder if maybe I still am waking up, but just not remembering it because I've gotten better at falling back asleep.

[USMCVet]

Have you had vitamin D checked? What do you think of sunosi? I'm on modafinal and it doesn't seem to work anymore.

[Pugsy]

I am saying that the scale of the graphs (they are too small) makes it difficult to evaluate them.

For arousal breathing flow rate education...watch the videos here.
http://freecpapadvice.com/sleepyhead-free-software

For how to post a screenshot and what graphs to post and get an idea as to scale...look here.
viewtopic/t158560/How-to-post-images-for-review.html

When you have a big gap because you have a short session and then nothing...turn off the short session so that your events graph doesn't look so weird.
You can turn off sessions....scroll down below the statistics column and just click on the session you wish to hide. You can always turn it back on later.

I like to see at least the overall detailed report to get the big picture and then maybe a zoomed in section of the flow rate.
It's really hard to evaluate anything with just snippets and too small of snippets at that.

Your Flow Limitations are far from horrible but they are bigger than mine...not that means much but just a comment. Below is a really bad FL graph. I don't know if you need or would do better with 4 or 5 PS....we can't tell just by looking at the graphs because they were never designed for that sort of reporting. Please don't go wild with PS numbers though....too much PS can trigger centrals.
When Dr Krakow did the higher PS it was in a sleep lab and people were being monitored by techs and if centrals started to pop up they could quickly address it...and besides...most of the time Dr Krakow had them on a bilevel machine that could treat centrals...yours won't. There are several different models of bilevel machines...some can force you to breathe when you have a central apnea and some won't do anything at all. The bilevel you have...won't do anything at all for a central apnea. When Dr Krakow was titrating people it was almost on the ASV bilevel machine and those will deal with centrals.

Try the bilevel though and see what happens...and BTW your new med Sunosi 112.5mg is well known to mess with sleep quality.

Bad FL graph...pretty impressive.

ugly fl graph.JPG

[ReverseBall]

Have you had vitamin D checked? What do you think of sunosi? I'm on modafinal and it doesn't seem to work anymore.

Thanks for reminding me about Vit D. I'm consistently on around 30 with the range being 25-100. So I'm on the lower end, but consistently inside the range. I do supplement Vit D, but I'm not as consistent as I should be. I'll work on this.

Sunosi makes me feel kinda weird... I'm not sure I've noticed much benefit, but it does make me feel kind of both dizzy and naseous.

I've tried armodafinil before - my first week on it made me feel pretty good, but afterwards, it made me kind of jumpy, and I would get really tired and unproductive but unable to nap. It wasn't a great experience.

I am saying that the scale of the graphs (they are too small) makes it difficult to evaluate them.

For arousal breathing flow rate education...watch the videos here.
http://freecpapadvice.com/sleepyhead-free-software

For how to post a screenshot and what graphs to post and get an idea as to scale...look here.
viewtopic/t158560/How-to-post-images-for-review.html

When you have a big gap because you have a short session and then nothing...turn off the short session so that your events graph doesn't look so weird.
You can turn off sessions....scroll down below the statistics column and just click on the session you wish to hide. You can always turn it back on later.

I like to see at least the overall detailed report to get the big picture and then maybe a zoomed in section of the flow rate.
It's really hard to evaluate anything with just snippets and too small of snippets at that.

Your Flow Limitations are far from horrible but they are bigger than mine...not that means much but just a comment. Below is a really bad FL graph. I don't know if you need or would do better with 4 or 5 PS....we can't tell just by looking at the graphs because they were never designed for that sort of reporting. Please don't go wild with PS numbers though....too much PS can trigger centrals.
When Dr Krakow did the higher PS it was in a sleep lab and people were being monitored by techs and if centrals started to pop up they could quickly address it...and besides...most of the time Dr Krakow had them on a bilevel machine that could treat centrals...yours won't. There are several different models of bilevel machines...some can force you to breathe when you have a central apnea and some won't do anything at all. The bilevel you have...won't do anything at all for a central apnea. When Dr Krakow was titrating people it was almost on the ASV bilevel machine and those will deal with centrals.

Try the bilevel though and see what happens...and BTW your new med Sunosi 112.5mg is well known to mess with sleep quality.

Bad FL graph...pretty impressive.

I will take a look at the educational videos regarding flow limits later tonight, but I wanted to update on the most recent night's data. I have looked through that forum suggestion and have tailored my screenshots to include only the 5 essential graphs. The following is from last night, with two zoom-ins on some periods of activity:

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2021_01_17_zoomed_2.png (108.61 KiB) Viewed 2949 times

Is this set of screenshots able to tell you anything new? Let me know if there's any segment of interest I can zoom in on. I hope the scale is large enough?

So my Flow Limitations aren't terrible, and if I were to try out the Aircurve 10 Vauto, it would only be a slightly higher PS of 4 or 5. It seems the bottom line is that the graphs can't tell us if I would do better on the Aircurve 10 Vauto, and I would just have to try it out and see?
I think I will talk to my doctor about considering getting off of Sunosi. It makes me feel really weird during the day.

[Julie]

I think you'll have a hard time balancing the meds unless you take the daytime one very early, because it can keep you awake at night if you're not careful, but I suppose you've already realized that. The testosterone may also be a problem in the same way - have you discussed all this with your doctor, or ? You might want to look into a better fitting mask unless you're comfortable with what you're using (the two straps, etc). Have you considered a soft cervical collar that'll keep your head up better (if it ends up on your chest, partly blocking your airway) but though may keep your jaw shut, it doesn't keep your lips closed. If any of this seems relevant.

[Pugsy]

There's really nothing on the graphs that would give us any idea about the success or failure of bilevel.
There are some things that we just have to go on subjective feelings more than anything else.
Now if I saw you continually using pressures in the high teens...more PS would definitely help in that regard but again lots of people use pressures in the high teens without even any PS of any sort and do quite well.

Everything with CPAP comes with a big YMMV. Often people look for data points to give clear cut answers to lots of questions but we have to realize that the data the machine gathers really is limited and there's a lot lacking.

I use a bilevel machine....just because I sleep a little better with PS of 4 than PS of 3. I don't need very high pressures except sometimes in REM.
As to the data that I see reported by the AutoSet I had and the bilevel....to be honest there was never any real consistent differences in anything.
BUT I felt I slept better and to me that's all that matters.

Asleep breathing is very rhythmic and regular and doesn't change....awake/arousal breath is irregular when compared to arousal breathing.

Asleep breathing circled in red. Different levels of zooming in of the same area so you can get the close up as well as the big picture.
Watch those videos at the link above.

[ReverseBall]

I went ahead and tried it. I think there was a funny period of mask adjustments about 20 minutes in. Not sure otherwise why there was so much activity in that period of time. Does this look like an improvement on flow limits? I'll pay attention to how I feel throughout the day and check back

[Pugsy]

Definite improvement on the flow limitation graph.

[ReverseBall]

So I have a little more time this evening to gather up my thoughts:

One thing I remembered is that I woke up to use the restroom at some point, and my heart was pounding pretty hard. This happens on occasion. I'm not sure what's going on? I've sometimes wondered if the P10 mask (which I was wearing last night) results in rebreathing of CO2, and if that's related to heart pounding.

At PS 4, it almost felt like it was doing my breathing for me and "driving" my diaphragm. A little unsettling at first, but I got used to it pretty quickly. Hope this isn't a concern. I'm wondering if I should experiment a little with PS. You said not to go crazy, but should I try to adjust around a bit in increments of 0.2 or so?


I felt pretty good for the first few hours after waking, but got pretty tired before too long.

I think you'll have a hard time balancing the meds unless you take the daytime one very early, because it can keep you awake at night if you're not careful, but I suppose you've already realized that. The testosterone may also be a problem in the same way - have you discussed all this with your doctor, or ? You might want to look into a better fitting mask unless you're comfortable with what you're using (the two straps, etc). Have you considered a soft cervical collar that'll keep your head up better (if it ends up on your chest, partly blocking your airway) but though may keep your jaw shut, it doesn't keep your lips closed. If any of this seems relevant.

I do struggle with sleeping at night sometimes. I think Armdafonil messed with my sleeping at night, and I'd like to talk to my Doctor about Sunosi making me feel weird as well. I haven't discussed the testosterone's affect on sleep. I inject roughly EOD, so it isn't really tethered to my circadian rhythm. Testosterone Cypionate has a half life of 8 days anyways, so not sure there's much that can be done on this front.

My jaw unhinges pretty easily, and my lips leak air pretty easily too which is why I use tape. I might try out a cervical collar - do you recommend that in place of the chin straps? Mask wise, I'd be almost perfectly happy with the P10 if not for it's vents - the other nasal masks I've tried don't seem to seal quite right against my nose, but the Swift FX isn't too bad. Do you have a suggestion for alternatives?

[ReverseBall]

For arousal breathing flow rate education...watch the videos here.
http://freecpapadvice.com/sleepyhead-free-software

I watched through those videos today, and I'm wondering about his advice on EPR. He seems to recommend turning EPR off because the exhale pressure gets too low, but this seems contrary to my understanding (and seems to kill the point of a bilevel machine). My understanding is that EPR or Pressure Set is what treats flow limitations (which I don't think he talks about so much) and I'd want to keep it set to around 4-5. Is my understanding correct?

[Pugsy]

I'm wondering about his advice on EPR. He seems to recommend turning EPR off because the exhale pressure gets too low,

Jason isn't a big fan of any exhale pressure relief for several reasons. It's his opinion and he is entitled to it. Just an opinion.
Exhale pressure can drop below a line where it might allow apnea events to happen. It all depends on where the line is and if that happens we can easily adjust for it just by increasing the minimum a bit.

Not a big deal. Your software reports will tell you if the exhale drop takes you down to a point the airway isn't held open well enough to prevent collapse. You will get more FLs or OAs or hyponeas if that happens. For most people it won't matter. It just depends on how close that minimum pressure setting is to the line in the sand where the collapse can happen.

I use what would be EPR of 4 if I was using the AutoSet model machine and EPR could go to 4. That drop during exhale doesn't allow any sort of apnea event to happen for me because my inhale pressure is high enough that when the drop happens...my airway is still held open well enough to prevent closure.

[ReverseBall]

Here is some more data with PS of 4.2. How is it looking? Should I up the pressure set by tiny increments? I did notice that I woke up a few times this night and went back to sleep. I guess these count as arousals? I feel like usually I'd forget about these events but remembered them tonight for some reason.

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[ReverseBall]

I was hoping to follow up regarding waking up with my heart pounding. Is this a cpap/ mask/ oxygen related issue at all? I've noticed it a few times, and it seems to happen a little more often with the Airfit P10 mask than with the swift FX. It's a little freaky, and I wonder if other people have experienced this? Here's an OSCAR data from a long nap I took tonight, where my heart was beating very heavily towards the end. I'm also surprised that some of these things that look like events aren't being picked up by the machine.

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2021_01_23_zoomed_2.png (110.98 KiB) Viewed 2847 times

On another note, I have my Philips Respironics Dreamstation CPAP DSX500 with 2507 machine hours on it. To my knowledge, sales on this forum is allowed, but should I start a different thread? I'm not exactly sure what the market looks like but I was hoping to get around $125 and I'm open to any reasonable offers.