First post, asking for help

[Stewe]

Hi all

This is my first post and I am really glad I found this forum. I have been quite active myself on another forum for another issue, where I have become one of the senior members helping others. Here I will be the beginner, clueless, asking for help...
I am Scandinavian, 46 years old. In good shape, not over weight. In better shape than most people my age.

I first noticed my sleep apnea when I started to wake up gasping for air in 2017. Had started to sleep poorly already in end of 2015. Woke up around 2-3 am every night wide awake. Couldn't go back to sleep for 1-2 hours and then just never slept properly from then on till time to get up. Half-sleep and just waking up a couple of times per hour.
I did the OSA test in 2017, had AHI of 16.5.
Was given a BiPAP at first. Not because of any clinical decision, just that it was the Rolls Royce of PAPs and if you can afford it, then why not? I could afford it so I got it.
Never felt it helped me at all. Stopped using it. Things kept getting worse and I contacted another doctor. This was all in Singapore, where I lived for many years. Got a Philips Dreamstation Go Auto CPAP. Appreciated the small size since I travel extremely frequently. Still no real improvement. But I was told I needed to give it time. And I did. HAve used it regularly (every night) now for at least 2 years. 
My monthly AHI average is around 1.5-2.0. Which should be fine. But the problem is - I don't feel fine. I still sleep poorly. More or less always wake up after around 4 hours of sleep and then sleep poorly from then on. I am often feeling like absolute crap when I wake up. Tired is a grave understatement. I would love to be tired. This is way worse. Completely off. Things normally get better as the day goes on and then I normally get tired (but perhaps tired in the word's normal meaning) by the evening. I have no problem to fall asleep. I don't think the mask and the CPAP is particularly uncomfortable. That is not the problem.
The strange thing is that how I feel at day goes up and down in cycles of weeks or even months. I've had periods when I have been feeling great. And then there are periods when I feel like absolute crap. The funny thing is that the periods when I feel good, I don't really sleep well. I still wake up a few times each night and sleep poorly the further in to the 7 hours of sleep I get.
Sometimes I almost feel that I feel worse the day after if I sleep through the night. My own layman's theory: When I wake up, I reset, breathe and get oxygen back in my system. When I don't wake up, I lie there with my lack of oxygene all night and wake up feeling like crap..?

Why did I get sleep apnea? My theory is because of TRT. I have had low T for ever. But did start TRT in 2013. At first, I noticed I slept so much better. Deeper. I was not sleeping poorly before that, but not very well either. After starting the TRT, I remember how I just fell asleep and then woke up 8 hours later. Now, I am aware of the time passing by through the night as I don't really sleep deeply. At least not after 3-4 am.
OSA is listed as a potential side effect on all the major brands of Testosterone gels, injections etc. I did try to stop the TRT for about 6-7 monhts in hope of getting rid of the OSA, but I slept just as poorly and felt even worse due to the low T. So back on it again. At regular TRT doses.


My TSH is also low. Subclinical hypothyroidism. T3 and T4 in the lower half of range, but TSH elevated. Several tests around 4.5-5.5, but a couple of test results at 9-10. Tried Thyroxine, but felt no better really and developed PVCs (extra heartbeats). Dropped the Thyroxine and after about a year the PVCs stopped. At least to the point where I never feel them anymore.

I feel I was very poorly managed my my physician dealing with my OSA in Singapore. Just given a CPAP, AHI is fine, keep going. Never did any titration for the settings, still using the same settings as I got the machine with. Did however try to increase pressure myself just lately as you can see below.

Just moved back home to Scandinavia a few months ago.
I will see a nurse (!) at my local hospital's Sleep Apnea department next week. But I have set myself to educate myself as much as I possibly can. And I think this is the best place to do it. 
I really need help, as it is now, I struggle to manage my work duties. I am a senior manager at an industrial company, and when I have my down days, I really struggle to perform in front of people. And of course, I am not the father or the husband I wish I was when I feel like I just want to sit by myself in a corner and wait till the time has passed away.

Don't know what to post, but here is a start:

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[Stewe]

First post, asking for help

Hi all

This is my first post and I am really glad I found this forum. I have been quite active myself on another forum for another issue, where I have become one of the senior members helping others. Here I will be the beginner, clueless, asking for help...
I am Scandinavian, 46 years old. In good shape, not over weight. In better shape than most people my age.

I first noticed my sleep apnea when I started to wake up gasping for air in 2017. Had started to sleep poorly already in end of 2015. Woke up around 2-3 am every night wide awake. Couldn't go back to sleep for 1-2 hours and then just never slept properly from then on till time to get up. Half-sleep and just waking up a couple of times per hour.
I did the OSA test in 2017, had AHI of 16.5.
Was given a BiPAP at first. Not because of any clinical decision, just that it was the Rolls Royce of PAPs and if you can afford it, then why not? I could afford it so I got it.
Never felt it helped me at all. Stopped using it. Things kept getting worse and I contacted another doctor. This was all in Singapore, where I lived for many years. Got a Philips Dreamstation Go Auto CPAP. Appreciated the small size since I travel extremely frequently. Still no real improvement. But I was told I needed to give it time. And I did. HAve used it regularly (every night) now for at least 2 years. 
My monthly AHI average is around 1.5-2.0. Which should be fine. But the problem is - I don't feel fine. I still sleep poorly. More or less always wake up after around 4 hours of sleep and then sleep poorly from then on. I am often feeling like absolute crap when I wake up. Tired is a grave understatement. I would love to be tired. This is way worse. Completely off. Things normally get better as the day goes on and then I normally get tired (but perhaps tired in the word's normal meaning) by the evening. I have no problem to fall asleep. I don't think the mask and the CPAP is particularly uncomfortable. That is not the problem.
The strange thing is that how I feel at day goes up and down in cycles of weeks or even months. I've had periods when I have been feeling great. And then there are periods when I feel like absolute crap. The funny thing is that the periods when I feel good, I don't really sleep well. I still wake up a few times each night and sleep poorly the further in to the 7 hours of sleep I get.
Sometimes I almost feel that I feel worse the day after if I sleep through the night. My own layman's theory: When I wake up, I reset, breathe and get oxygen back in my system. When I don't wake up, I lie there with my lack of oxygene all night and wake up feeling like crap..?

Why did I get sleep apnea? My theory is because of TRT. I have had low T for ever. But did start TRT in 2013. At first, I noticed I slept so much better. Deeper. I was not sleeping poorly before that, but not very well either. After starting the TRT, I remember how I just fell asleep and then woke up 8 hours later. Now, I am aware of the time passing by through the night as I don't really sleep deeply. At least not after 3-4 am.
OSA is listed as a potential side effect on all the major brands of Testosterone gels, injections etc. I did try to stop the TRT for about 6-7 monhts in hope of getting rid of the OSA, but I slept just as poorly and felt even worse due to the low T. So back on it again. At regular TRT doses.


My TSH is also low. Subclinical hypothyroidism. T3 and T4 in the lower half of range, but TSH elevated. Several tests around 4.5-5.5, but a couple of test results at 9-10. Tried Thyroxine, but felt no better really and developed PVCs (extra heartbeats). Dropped the Thyroxine and after about a year the PVCs stopped. At least to the point where I never feel them anymore.

I feel I was very poorly managed my my physician dealing with my OSA in Singapore. Just given a CPAP, AHI is fine, keep going. Never did any titration for the settings, still using the same settings as I got the machine with. Did however try to increase pressure myself just lately as you can see below.

Just moved back home to Scandinavia a few months ago.
I will see a nurse (!) at my local hospital's Sleep Apnea department next week. But I have set myself to educate myself as much as I possibly can. And I think this is the best place to do it. 
I really need help, as it is now, I struggle to manage my work duties. I am a senior manager at an industrial company, and when I have my down days, I really struggle to perform in front of people. And of course, I am not the father or the husband I wish I was when I feel like I just want to sit by myself in a corner and wait till the time has passed away.

Don't know what to post, but here is a start:
   

Thanks in advance

[Stewe]

Getting there...
Just learned how to properly attach a pic. I hope. 
Sorry for all the mistakes, but hopefully I got the picture right this time.

Thanks in advance again.

   

[Melman]

Welcome to the forum. Please post a daily chart. It provides the data we need to evaluate your therapy. See the links below for how to organize and post your data.

[pen123]

How did you attach the chart? I can't seem to be able to figure it out. Also how do you like the dream Station? I've tried it and the ResMed. The Dream Station is much smoother. Koo koo

[staceyburke]

You attach a screenshot (use F12) by using the button to add a photo (attachment) at the bottom of the reply. - use the rely button not the quick reply.

[staceyburke]

I owned a dreamstation for 5 years. I could not get my events down more than 15 to 20 per night now with the ResMed I’m never higher than3 and many nights 0. A huge change for me between machines.

[Dormeo]

Stewe, do post a Daily chart so we can see whether it holds any clues. But I suspect you are overdue for a big medical workup. I strongly recommend that it include blood tests for autoimmune diseases, especially in the connective-tissue-disease family. The reason I say that is that deep fatigue is often the primary complaint, and symptoms can come and go in a pattern of flares and remissions.

Some good general information here:

https://my.clevelandclinic.org/health/di...e-diseases

It would help your doctor for you to be able to be pretty specific about the pattern of feeling good/bad and to be able to describe your fatigue (e.g., flu-like? gets worse after exertion? present upon awakening?) and your mental state (trouble thinking of words? following trains of thoughts? concentrating? making decisions?). Your doctor may ask you about any serious infections you might have had around the time of onset, whether you've noticed your fingers changing color (white/blue/red), whether you have patches where tiny blood vessels are broken, whether you experience joint pain, whether you've noticed any discoloration of your skin in the area of your nose, whether your mouth or eyes chronically feel dry. So you can give those topics some thought too.

About oxygen: it doesn't sound as though this is an issue, but if you can afford to get a recording oximeter, you could see what your O2 levels are doing during the night. In Oscar, look at the Oximetry Wizard on the welcome page to see which ones can be exported to Oscar.

[Stewe]

OK, thanks for the reply and the willingness to offer help.
I attach two charts. 
The first one (Jan 11) is from a night where I felt like absolute crap the day after. If brainfog is a word, that's what I had tonnes of. No records on my subjective grading of the sleep that night.
The second one (Jan 4) is from a night where I subjectively slept well, and felt really, really good the day after.
Both nights I use the same mask, Philips Amara Gel Full Face Mask.
   
   

Thanks in advance

[mesenteria]

Good to see you here. 

Your first chart states that your minimum pressure is 4.0  That's much too low.  If you look at the flow rate chart, see all those shaded areas?  You're getting flow restrictions, and I'd bet a dollar to a dozen donuts that your minimum pressure of 4.0 is grossly insufficient.  If it were me, I'd raise that immediately to 8.0 and try that for at least three nights in succession.  Three nights because successive nights have variability from person to person and night to night.  You want to see if the range is smaller rather than larger.