09-11-2023, 06:46 AM
New user struggling to wake up refreshed
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!
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!
