[Treatment] New user struggling to wake up refreshed

[THEVGE]

Hi all,

Summary: 

CPAP therapy works on paper (AHI <1, leaks OK, 100 % committed, sleeping 8 hrs), but I wake up tired every single day. My job and quality of life are under pressure. Support from the hospital will never save me. 

Note: PSG test and OSCAR images will follow after I post and save the text below.

Details:

I was diagnosed with mild OSA mid 2021, PSG sleep test showed AHI = 8 and AHI = 14 when on my back. Back then I had several severe health issues, including Afib, so I was put on CPAP immediately. The Afib is now under control (without medicine), probably caused by a combination of long term untreated sleep apnea and stress (both mental and physical). Not officially diagnosed, but I am pretty sure my OSA is caused by a restricted airway (the doctor who did gastroscopy a few years back complained about the narrow entrance ;-)). I was 46 when diagnosed with a BMI of ~26, but in hindsight me and my girlfriend think I was probably already having issues relating to OSA that goes > 10 yrs back. Important note, I am located in The Netherlands. Normally therapy settings should be done by the hospital, but there knowledge is limited to AHI numbers, leakage and .... well, that. 

I was put on a Resmed 10 AutoSet with N20 nose mask, at a whopping CPAP pressure of 5.4 cm H2O. Surprisingly, this was and is enough to manage my AHI < 1. But although this helped and my sleep improved (at some point I was able to sleep in well, sleep ~8 hrs, although I do wake up most days 1-2 times), I never ever felt refreshed after sleep. All tiredness seems condensed around my eyes, maybe this is what people call brain fog? I did have a second PSG sleep test with CPAP at 5.4 resulting in AHI = 2.6 but I also see 8 awakenings and 40 arousals in the report. Nobody triggered on this including myself back then (quite shocking reading this now to be honost).

During my therapy I got into trouble because I started changing settings myself, as I got nowhere with the help of the hospital. After setting that straight, we increased the pressure (because I preferred the higher air intake better, 5.4 started to feel claustrophobic) and we went from CPAP to APAP with the idea to get some indication of what end pressure I should have. But basically no follow up ever happened and I gave up expecting something from them. So I slept for a year with APAP 7-8 no EPR (I already know I will get remarks on this tight range). Sleeping in, making ~8 hrs was fine but still I have not had a single day where I felt refreshed. By now my job is under pressure and my quality of life is low. I don't have the energy.......

So I decided to pick it up again, and start asking in forums where people do recognize these struggles and where I feel hands-on and theoretical knowledge is present, like this forum. So here I am! I am also on a Dutch forum so some might recognize my struggles from that forum. 

What do I "think I know" today:

- I probably had issues for > 10 years related to some form of OSA (and maybe my dad as well (genetic?), although I will never know as he died at 59 from a stroke and a collection of health issues nobody wants).
- I suspect my airway to be the cause of my OSA.
- Looking at my data using OSCAR, I tend to think I always had and still have inspiratory flow limitation issues (when you mention these words in The Netherlands they stop listening, no support has ever looked at detailed Resmed data besides the high level reports).
- If IFL is my main issue, based on reading here and the Dutch forum, I expect 1) my pressure has to go significantly up, 2) I have to start using EPR and 3) I may need a BiPAP.
- I already started upping my pressure (now trying CPAP 9 EPR 1), but I have a lot of stress right now and my sleeping is currently horrible. So reliable data is not yet available beyond my 1 year APAP 7-8 no EPR. 
- I respond badly to EPR (when I set it at 2 or 3 my body forgets to breathe, EPR 1 seems to be OK with limited experience).
- I don't care anymore if the hospital gets mad at me for self treating and I am willing to drop serious money (e.g., buying my own BiPAP) if needed as my job is at stake.

I will now generate some images to share from my PSG tests and OSCAR therapy data. Looking forward to your comments, questions and advice!

[THEVGE]

Not sure if I made a mistake, I assumed I would be able to edit and update on the fly. The edit option is gone so I will post some initial images in a reply. And I ran into a maximum of 3 attachments. All fine, just have to getting used to how this all works.

Image 1: Selection of PSG home test results that gave mild OSA diagnosis. Mostly Dutch, if needed I can translate.
   

Image 2: Selection of PSG home test while on CPAP 5.4 no EPR.
   

Image 3: Overview how my FL looks graphically and in numbers during my therapy (as I am now focused on FL).
   

Will work on OSCAR plots of a typical night later!

 

[THEVGE]

OK, so next is a random chosen date showing a typical OSCAR overview of my nights. This is APAP 7-8 no EPR as I have been on the last year.

I hope my story and added images enable you to advice on what to dop to solve my chronic tiredness. 

Thanks for your time!

Image 1: High level overview.
   

Image 2: Zoom in showing disruptive flow.
   

[THEVGE]

Still struggling, so let's give it a new try to get your expert opinion. I am currently on bi-level as CPAP did not do the job. I have achieved pretty good flow rates (compared to before), but I still suffer from waking up a lot (also visible in OSCAR) and daytime fatigue. I have learned (or at least, I think) I do not need a very high pressure to suppress obstructions/hypopneas (> 6,6 will do the job but even at lower pressures I rarely see 1 or 2 obstructions during the whole night) but I do need high pressure support (> 5.0) to get good flow rates. Currently (still/again) experimenting with the settings. It seems I have a hard time dealing with baseline pressure higher than 7.2 with PS 5.0 or above (mouth leaks).

I was recently diagnosed with "chronic hyperventilation" so this will surely be a part of my fatigue.

Open for any suggestions to improve, but my specific questions is:
- Do I still suffer from airway collapse, or put otherwise, do I need to up my baseline pressure?
My numbers are great, and the mask leaks are not always this present, still working on getting this better. 

See 1st image (6.2 PS 5) between 01:00-01:25 while having a mask leak. 

   

Same for 2nd image (8 PS 6) around 00:00 and 01:00.

   

Third image shows the flow rates (random example) I currently can achieve, as long as not in REM, as long as my PS is 5,0 or above.

   

Any tips appreciated!

[Jay51]

These charts look better than the charts that you posted earlier.  You are figuring out your own settings well.  0.00 95th percentile flow limitations here.  0.33 95th percentile in earlier charts with straight cpap with no EPR.  The close up flow rates that you post look great also.  

Only a few big leaks at the end of therapy.  

Keep up the good work.  You can up your pressure slightly to see if it helps, but these charts look pretty good.

[WhyMe]

Keep in mind that not all arousals are related to breathing issues. In my case, OSA was well treated with Bipap, but I also needed treatment for periodic limb movement. Once that was under control, I needed help breaking a 30 year habit of only getting 3-4 hours of sleep at a time. There can also be environmental factors, like light, noise, partner movement, pets, medications, other health issues (such as chronic fatigue syndrome or thyroid issues) - you get the idea.

One thing at a time of course. First get the OSA under control, then work on sleep hygiene, then consider other possibilities.

[THEVGE]

Thanks for the kind and re-assuring words.

I might be onto something, as yesterday for the first time ever I tried what happens if I tape my mouth. I do not know yet if it is positive or negative, but I woke up feeling run over by a tank. I could not get out of bed until 11:30 and even then I had to drag myself. But the tiredness was different, better I would say, more like lazy tired instead of exhausted like normally.

What I further experienced, when sleeping light/dozing off and aware while wearing my mask, is how often I had a mouth leak. Until today I always assumed my leaks where mask leaks. Just checked the data and.......0 leakage!

You have no idea how much I am looking forward to sleeping the coming days hoping for a positive effect!

   

[Jay51]

That is a very clean and "quiet" chart that most people would envy.  0.00 95%tile flow limitations also.   Try to get develop a trend of this type of quality sleep and see if things change for the better.

[THEVGE]

That is the point, there is no quality of sleep, even with these great numbers. Night 2 with tape was terrible (I have about 4 hours of fragmented sleep). I have continuous air bubbles in my mouth so I think I am forced to reduce my pressure/pressure support up to an optimum where the bubbles stop, but then my pressure/pressure support may get to low for good therapy. We will see.

Besides lowering pressure/pressure support, what else can be done?

I am thinking more and more maybe I should try an oral appliance. Been struggling for over 3 years now and still getting nowhere......

[nh00]

I'm sorry I don't have any helpful advice, but I want to say that you aren't alone. Your description of fatigue being concentrated around your eyes is exactly how I feel, and I've also not found relief from CPAP yet. I tried an oral appliance first and had no luck. I'm rooting for you and wishing you the best