Have you been diagnosed with idiopathic Central Apneas? If so, how?

[thibaulthib]

Hey There!

Have you been diagnosed with idiopathic Central Apneas? 
If so, which tests did you run to rule out any possibilities of disease and make sure there was no other explanation than the fact it is idiopathic?

Quick introduction of myself, Thibault, French, 28 years old, Male, 170cm, 70kg. 
I've never smoked, never ever taken any medecine for whatever reason (Except Ventoline when I was young because I was doing asthma).
Well, the only real "medecine" I have taken was Decapeptyl for 3 years, from 10 to 13 years old, to treat my early puberty.

I just found out 2 weeks ago that I am having the following events during my sleep, and had to move from CPAP to VPAP S/T (backup rate):
- Very low tidal volume (220ml - 280ml) vs the 400ml that I should be getting
- Central Hypoventilation
- Central Apneas (Not through a PSG but with my Resmed Lumis 150 ST and Sleepyhead)
All this happens sober, and is definitely worsen when intoxicated. I only (used to) drink over weekend, and never touch anything over weekday. But here is not the question.

I have been running all the following tests in the past 2 weeks, which all came back normal:
- Heart check: ECG, CT scan, stress echo test (treadmill), 24h Holter
- Complete Blood check (vein). Here are the tests: https://lifescanmedical.sg/services/health-screening/men-deluxe/ 
- Cortisol check
- Blood Gas check (artery)
- EEG
- Brain MRI with contrast (It includes the upper part of the neck)
- Pulmonary function test (Spirometry) + chest X-ray

Something I can add on about myself:
- Since I am 170cm, I have always had a constant weight of 70kg. However, from 2010 to 2014, I suddenly took on weight and went up to 90kg (BMI=31). I stayed at that weight for 4 years, and had that time, my ex girlfriend was complaining that while sleeping I was snoring, gasping... I did not believe her for some reason. Of course, night sweats were here too, and I was often depressed, moody, morning headache, impossible to focus/concentrate, loss of motivation for social activities, etc, you know the story...
- Then suddenly, in 2014, I started losing weight when I moved from France to Singapore, and since then I am back to 70kg.
- I have got diagnosed with sleep apnea in March 2018, where the PSG showed an AHI of 11/hour over the night, and AHI of 30 during REM Sleep only. The PSG only mentioned I was doing hypopneas (not a single OA nor CA have been detected during that PSG night...).
- I have been drinking almost every weekend for the past 8 years, when I've started uni. Since all this happened, I haven't had one single sip, it has been 4 weeks now. Once again, I am aware about what you are thinking, if all these CAs are dues to that, let's face it, but none of all the specialists I have seen (2 different Cardilologists, 1 Pulmologist, 2 different neurologists) can tell, even though they said it may play a role. No study is able to prove it.

My questions are the following:
1) Is there any other tests that should be run in order to make sure we are not missing out anything and that I also suffer from idiopathic CA?
I am thinking of a full neck and spinal cord MRI for instance.
2) I was also wondering if somehow, while I was obese, I could have developped OHS? And after losing weight, I may have kept the OHS symptoms which may have evolved to CHS?
3) I am now all good with the AirCurve 10 S/T, but will my condition get worse over time, meaning I will be having more and more CA?

I am just trying to find an explanation, knowing that my symptoms started in 2010, which brings me back when I was 20 years old (So at that time, there wasn't much alcohol involved since I was a "poor" student, lol).

Thank you all in advance,

Thibault

[sheepless]

I don't think I can offer much of value to you in terms of answering your questions but want to respond that I was dx'ed with moderate central sleep apnea in 1987. cpap was not yet widely available and nobody seemed to have any idea how to treat ca. they did a basic pulmonary function test and we experimented a little with O2 and some medicines, one supposed to increase blood O2 and a couple older anti depressants as I recall. no effect. only just the last 2 years with apap and asv after a new diagnosis of severe obstructive apnea (older and fatter after 30 yrs.) even though I had almost equal numbers of obstructive and central events in my 2016 at home test. they ignored both ca and periodic limb movements.

no one has ever specifically called it idiopathic but in the 30 years since the original diagnosis no one has ever said I have some underlying disease causing the problem. personally I prefer idiopathic to finding out I have some identifiable problem. I do believe that growing up with central apnea is related to having lifelong attention deficit disorder (not recognized / diagnosed until ~ 45 years old but clearly evident in childhood in retrospect). more recently I've become aware that I have disruptive periodic limb movements which I also kind of suspect is related insofar as they all suggest some kind of neurological origin / problem.

you are way ahead of me in terms of seeing doctors and getting tests. I look forward to reading about your results.

[thibaulthib]

Thanks!

Ho and I forgot to tell something in my description, but when I started feeling unwell in 2010, at 20 years old then, I went to see a neurologist and had passed some cognitive tests, which the outcome was that I suffer from ADHD, and should be treated with Ritaline.

I did not accept to take any of that medicine, so I had to deal with it without... I guess I was already having sleep apnea at that time, without knowing it. But in retrospect it makes a lot of sense now... 

Where I am P*ssed off is that even after describing all my symptoms, no one ever proposed be to run a sleep study!

Thibault

[Mosquitobait]

You can have brain anomalies without them showing up on current technology. A standard scan still doesn't show the damage done by lightning for instance, yet the affect on the person can be very profound and permanent.