I am a 19-yr-old Austrian guy who has a sleeping disorder caused by a disfunction of my brain. AMA.

Imagine trying to explain a girl you take home that she has to do all the work cause you're too tired and want your special mask!

I'm joking here, but have you ever had such a situation?

Haha yeah it happens...

most of the times i mention it when chatting with the girls, since they always ask me why i am allowed to study at my young age. then i have to explain why i didn't have to do the military service and therefore started to study one year earlier.

explaining the weird machine next to my bed when being drunk isn't that easy though ;)

EDIT: forgot to mention that the disorder kept the military service away from me

Do you guys have civil service as an alternative to the military service, like we do in Switzerland? If so, could you be/are you required to do that instead?

i guess the fellow redditors explained that now ;)

thanks everyone for helping me out btw, i know i'm answering late :/

Does it make sound like Darth Vader's mask? :)

It does! :D

But the sound is more high-pitched, it's not excactly the deep darth-vader-sound.

Just imagine premature Vader walking around his toy-deathstar ;)

STAR WARS DOESN'T WORK LIKE THAT

IN MY HEAD IT DOES!!

pics of the machine?

imgur link in the description :)

EDIT: this comment showed the OP, i decided to put it back in the description

have you ever been tempted to turn your mask into some kind of ungodly bong?

haha!

i joked about it with some friends, i guess it would work because the mask sucks in the air of the room and presses it into my nose

sleeping in a smoked room with the mask is horrible though, it feels like i smoked dozens of cigarettes while sleeping

i sleep on my stomach. how fucked would i be if i had to wear that mask?

I also do, it's not a problem once you figured out how to position your head on the pillow :)

so i've been planning a trip to germany. make me want to visit austria instead

tepends on what you want to experience on your visit, germany's cities are more exciting, we got the landscape and the mountains ;)

My roommate's dogs like to shit right in front of the air intake.

this dog would be horrible for me!

my dad has the same machine but he never wears the damn thing. he has a problem where he wakes up 4-5 times an hour because of him not breathing. he said it was something like 20 times a minute where he stops breathing. so then he falls asleep throughout the day when he sits down all the dam time. he spent over a grand on the machine. any tips on getting the idiot to wear the thing?

the machine is quite uncomfortable at the beginning, but it's crazy how fast you get used to it.

i thought a lot about not wearing the mask, but when i started to realize how awesome it is not to be tired, not HAVING to fall asleep all the time and having more hours of actually being FULLY awake, i started to like wearing the mask since i can experience my everyday-life a lot easier when not being tired all the time.

you just have more of the day and my mood got a lot better since i wear the mask every night.

also, it's very unhealthy to not wear the mask, as i mentioned in the description i wouldn't be able to get old without the device, i don't know how old your dad is but high blood pressure is always an issue and it drops significantly once he starts wearing the mask

I want to elaborate on this a little bit as these two modalities are extremely different.

Mlarson's father's PAP device (positive Airway Pressure) is either Cpap or BiPap. Cpap is a single pressure all the time to create a pneumatic air splint allowing the patient to breathe. BiPap is essentially the same, but the device has two pressures; one high pressure for inspiration and a lower pressure (normally at least 4cm/water pressure lower) for expiration. The difference is for comfort or for other underlying pulmonary complications (emphysema, copd, fibrosis...).

VanOlenger's device is designed to assist with his central sleep apnea by analyzing his breathing and determining whether he is breathing on his own or not. If he is breathing spontaneously, it continues to act like a normal Cpap/BiPap. If it senses a lack in respiratory drive, or his breathing rate falls below a specific number, the device then increases pressures to act like a ventilator.

VanOlenger's device is more intrusive and uncomfortable. Cpap/BiPap are a cake walk comparatively.

Source: I am a registered sleep technologist (Polysomnographic Technologist) with about 8 years in the field, currently managing a lab in California and specializing in sleep education and Pap therapy compliance.

whoa, thanks for helping me out there :D

Do you know that you couldn't breath at night or did someone had to tell you ?

i honestly thought that being tired is normal, since i was tired for so long.

finally, my friends filmed me during a sleepover

my friend's dad, who is a doctor, told me that somethings wrong when we showed him the video, joking about my "strange" sleeping habits at the kitchen table

it's really "funny" (can't say it's the best way to describe it, i should say odd and normal at the same time, i don't know, but whatever) that you said that you thought it was normal to be tired.

That's not the 1st time someone says something like that : thinking what you think is the general paradigm among people (like the thread where someone was talking about seeing colors when hearing music or something : he really thought that everybody had the same feeling).

This psychological thing can really make your life shittier.

It sure can!

Why the fuck is your friend/friend's dad filming you while you sleep?

some friends filmed me because they thought stopping to breathe while being asleep is funny

it honestly is when you don't know what it's all about

What's your favourite type of coffee?

black and strong!

Is it really uncomfortable to wear?

I got used to it in about 6 weeks, i sleep perfectly now

it sometimes slips from my nose when i move, but i just wake up and put it back on, its not a big deal

My dad suffers from sleep apnoea as well and wasn't diagnosed until his mid 40s. He described it just they way you do as if he had never been fully awake before he got the cpap machine. I'm starting to worry a bit myself because I can't ever seem to get enough sleep. Often I'll go on only a few hours for days because it never even seems worth it to sleep. When you slept before, were you a very heavy sleeper?

I love the device, being awake is a great thing!

Before i got it, i slept a lot and had a very deep sleep, so i would say that i was a heavy sleeper. Try to get checked for sleeping disorders, there are so many different ones and if you have an odd sleeping pattern... better safe than sorry!

Finally moving back home in a week so I'm definitely going to look into a sleep study. Take care!

Do it man!

You too!

I'm trying to answer all the questions you guys ask here, but since i'm pretty new to reddit i struggle navigating through the comments, so it might take some time.

Also, i am foreign Austrian and have to think a lot about my expression when it comes to typing in english, so it also takes me a lot of time to phrase my answers (i have to google some words i don't know, etc.)

Sorry for that!

I keep reading pretty much everything you write in Schwarzenegger's voice. I hope that's okay. Do you consider Schwarzenegger a hero or sellout of Austria?

hahaha!

he's not that big of a deal in Austria, i guess we joke about him as much as the whole internet does^{^}

i won't say he is a 'hero', just an Austrian who made it, but there is a bigger hype about Christoph Waltz right now

Also, i am too young to actively notice Schwarzenegger's time as a movie star

I read this and was confused and then re read the OP and learned that OP is not in fact Australian

by the way

whats the OP?

noob redditor here!

Did you ever drink a lot of energy drinks just to get through the day ?

i don't really like them^{^}

sleeping more than 12 hours every day, i was kind of ok between my bedtimes, i survived my classes in school by occasionally sleeping when the topic got a bit boring, focusing on staying awake when i knew the teacher told us something important.

when i got home at 3pm, after lunch, i slept another hour, then i had another 5 hours of staying awake, which was ok for me.

Do you breathe sufficiently during the day? Does it ever feel like you aren't breathing enough? (Just wondering if that can happen with central sleep apnoea or if it's only when you're asleep)

Good question!

When i'm watching TV for example, i start snoring a bit because the apnea starts to kick in.

basically, everytime i get inactive, lie down, sit without moving, etc. ..., i start snoring.

when that happens, it kind of feels like it does when i wake up without wearing the mask, a bit strange in my chest and my throat, it's really hard to explain.

Woah my boyfriend's dad does this! I'll be watching tv with my boyfriend and his parents, then his dad starts snoring but when we look over he's awake. Maybe he should get checked out.

he should!

obstructive sleeping apnea is a common thing!

Does this mean you are constantly in manual breathing mode?

the air is pumped to the mask where it either leaves the mask through an overpressure valve or is breathed by me.

Servus (Do you say that or is it just Bayern?)

How's health care working in Austria? Is it the same as in Germany? has your insurance company covered it all? Does it make your accent sound better (sorry :D I just had to make one witty comment)?

Grüße from Düsseldorf.

we also say that, but in my dialect we say 'seawas' :D

We have free healthcare, just like the germans as far as i know, i got the device completely covered (and i'm so glad that i did, it's worth about 2500€ and im just a poor little student :P)

i have a german accent i guess.... not that sexy if you ask me

Wait... so no typical Austrian accent (if you speak German, obviously. We all sound the same if we speak English, I suppose)? I'm a bit disappointed to be honest.

It's probably a too important device to not cover it anyway. Some insurance companies don't pay for glasses but I think a machine that keeps you alive for 2500€ is not that much of a problem.

Yes, there are a lot of Austrian accents that the Germans don't understand at all, i come from upper austria (seawas for 'hi!'), which is next to germany's bavaria (servus for 'hi!'), thats why it sounds familiar.

i always like to describe the difference in the languages between austria and germany as kind of like the english and the scotch.

but there are also dialects in germany that i don't understand (to be fair there is also an austrian dialect that noone here understands at all)

but i get off the topic...

you are right, it's an important device, but today i already learned in this AMA that the americans that have a problem like me have to pay for it themselves, as one of the askers pointed out. crazy!

I guess I'm weird, but I have always LOVED German accents lol.

I guess my accent isn't that heavy, but we do get a slight touch here ;)

[deleted]

that's a great idea!

Thanks a lot for that!

I have an odd sleeping pattern, I sleep all the time also. Yesterday, I finished my day at around 3:30pm and went to sleep. I woke up at 7pm for somebody coming to the house, stayed awake until about 9pm then went back to sleep. I woke up at 1:30am for a few minutes then slept through to night and woke up at 9:30am this morning. I have thought about seeing a doctor but never got to it.

Do it!

it really sounds like my sleeping schedule before i got the device, and it's really anything but normal.

On your part, i would see a doctor if you can manage to do so!

I too have sleep apnea, although I have the normal kind. Glad you got diagnosed and can sleep better!

Thanks :)

Get yourself checked every now and then!

OP is Bane...

I AM!

When asked to choose a language opinion (online, dvd. for example), do you often accidently choose australia? i know i often choose austria

happens^{^}

but i mostly look for german anyway

Is this a type of disorder that would have been with you since birth, or something that happened as your brain developed?

It developed, i had normal sleeping schedules as a child, and as i got older, at the age of 12-13, it started.

How did you notice it starting and what did you think of it at the time?

Sorry for the late answer :/

my friends filmed me sleeping and we showed the video to a friend's father (just joking around, not being serious about it at all) who is a doctor, he then told me there was something wrong

the time i didn't know it, being tired was considered to be normal by me. when the doctors told me about the disorder, i was just happy that there is a device to deal with sleeping apnea, and that i don't have anything worse.

I have that too, but don't want to get the big clunky machine. I like to travel and feel like using the machine would prevent that. Is is really worth it?

i travel a lot, always hitchhiking through europe and my country when i have time to do so.

i only take the device with me when i know i stay in a hotel/motel, f.e. when i go diving for a week. you just need electricity for it to work, so i can't take it on my hikes

it's not a big deal. i just know that when i travel i'm tired, when i'm at home i can sleep with the device.

it's always worth to get the mask i think, since you get older when you use it, and most importantly, it's not clunky or anything, the bag i carry it around with is about as big as a small handbag

It's very much worth it. Depending on the severity, sleep apnea can kill you. It also causes weight gain, hypertension, enlarged heart, and other issues. The machines these days are small and pack nicely into a bag that is easily carroed around. As for the masks, there are tons and several styles. Which aren't too uncomfortable.

Source: I'm a RPSGT

The masks are so awesome!

I always get hyped up when i talk about them, they make life a lot easier!

There are dental appliances that can help with this problem if you don't have too bad of a case. Look in your area for a dentist that practices dental sleep medicine

this works if it's central, not obstructive?

as far as i know, there are no surgeries to help against central apnea

Not to sound cynical of anything, but this was a pretty cool post.

I'm not sure if I'm following correctly, so, because you had issues sleeping, but your blood pressure was still really high, did you physically get exhausted or did it take longer for your muscles/body to feel sleepy because they felt like you were always active?

Thanks for sharing your story bro!

Thanks for the comment!

I always did a lot of sports, when i didn't have the advice, my pulse was extremely high, talking about 85-90 normally and up to 190 when i ran rapidly. I was the captain of the soccer team i played in for six years and i did notice that with the same amount of training, my pulse was always higher than the other's ones. also, i sweated like hell.

How is the weather in Austria this time of year?

The weather is great, i just went swimming in the danube river yesterday (was a bit cold though).

a lot of sunshine these days!

Is it sleep Apnoea that you have? Are you aware sleep Apnoea is common?

[deleted]

thanks for that, description will be edited :)

I was coming on here just to say this. But your description was good enough. Source: I'm a sleep tech.

That's a nice compliment :D

Thanks!

I did post this in the description. Sleeping apnoea is pretty common and i know that, but most of the cases its caused by heavy smoking or not enough workout.

My apnoea is completely caused by a disfunction of my brain, which makes it the rare "type" of sleeping apnoea.

I don't know the numbers, but my doc told me that 0,5% of all sleeping apnoeas are completely caused by the brain.

Fellow sufferer here. I'm curious how this affects bringing girls home. How do they react? How do you bring it up? (I was in a relationship when I was diagnosed, and am still in that relationship so I never experienced single life with the machine).

I answered a similar question above, i'll ctrl-V if you don't mind ;)

i am a single so:

most of the times i mention it when chatting with the girls, since they always ask me why i am allowed to study at my young age. then i have to explain why i didn't have to do the military service and therefore started to study one year earlier. explaining the weird machine next to my bed when being drunk isn't that easy though ;) EDIT: forgot to mention that the disorder kept the military service away from me

What methods did you use to try to sleep before you were diagnosed?

i never had a problem falling asleep as i was always tired anyways, the problem is that i stop breathing.

You're lucky to be diagnosed so early with sleep apnea. I wasn't diagnosed with extreme obstructive sleep apnea until I was 27. Effectively 27 years of feeling run down constantly.

School was hell as I was always tired in the mornings and exhausted in the afternoons. University was much the same, barely making it to lectures due to being exhausted.

My work has also suffered, especially early starts, I would be lucky if I had 3-4 hours 'sleep', not to mention not having any solid REM sleep or dreams.

Now I have my apap machine it feels like I'm clawing my life back. Mentally sharper, better concentration etc and my blood pressure is coming down.

your experience is like mine, and yes, im extremely glad that i got it before i started my life at university. it really helps a lot!

keep it up!

Da du ja Österreicher bist frag ich einfach mal auf Deutsch: Ist das nur während des Schlafens? Denn deiner Erklärung nach, hört es sich logisch an, wenn es nicht nur während des Schlafs sondern die ganze Zeit über der Fall wäre. Vielleicht ist das sogar der Fall und du merkst es nur nicht....

Ist nur beim Schlafen so, da erst dann mein Gehirn inaktiv genug ist. Ich merke aber leichte Anzeichen der Apnoe wenn ich müde werde, fernseh oder generell inaktiv bin.

[deleted]

There is no cure for central apnea, but i don't really care since I love my device, it makes life a lot easier and i don't mind sleeping with it.

And i can totally relate to the problems you had, i'm glad you got it diagnosed!

Wiener?

Linzer, studier seit herbst in graz :)

Heh, when I got tested I had somewhere in the 80's (82 I think) in incidents per hour and each incident was approx 35 seconds or something. Which from my poor math means I wasn't breathing for half the night. Though now I have the answer as why I could always hold my breath for a long time lol

That's more than a lot O.o

Go get your mask!

Seriously, more than eighty incidents w more than 30 seconds are horrible stats

What was diagnosis like for this? I think I may have it too but not sure how to go about asking my doctor. did you go to a specialist? did they observe you overnight?

go to a doctor, say you think you have sleeping apnea, they should tell you were to go.

i got it diagnosed after sleeping two nights at the local hospital, where i slept at the sleeping laboratory

so far, i've slept there 11 times

I'vee never heard of "sleep apnoea", are you sure you are not referring to sleep APNEA? It's fairly common in the US and it's classified by periods of abnormal breathing, sometimes to the point where you O2 sats drop below 80%. Sorry, not trying to be a smart ass, but just wanted to clarify. All your symptoms line up with this including having to wear a "small box" at nights, aka a CPAP machine.

It's more prevalent in the US because we have more obese ppl(not saying everyone with sleep apnea has obesity, but it's common) but the added weight and pressure on the epiglottis causes ppl to have moments of not breathing (aka apnea) while sleeping. Sorry, ICU nurse needing out

i do have sleeping apnea, but i'm foreign austrian and we say 'schlaf apnoe' so i got confused.

I have 'central' sleeping apnea though, which is not the same thing as the obstructive sleeping apnea of obese people.

That's why i call it rare, it's not the common apnea :)

This is not worthy of an AMA. You have a condition that a large amount of the population does (me included) - the only difference is the trigger.

I had a CPAP machine, hated it, opted to have surgery to correct the anatomy of my throat.

I thought about the AMA for quite some time, thanks for the nice comment :)

So you're awake during "Murica" hours?

its 7 pm in Austria right now.

[deleted]

we have no kangaroos!

Do you know if it has a genetic root? If so, where?

I have no idea, sorry for not being able to answer your question.

There are no other cases of central sleeping apnea in my family.

magst auf an kaffee gehn? :d

haha, graz und linz würd gehn!

best of luck man.

i am also 19, when i sleep my nostrils swell up and restrict breathing (maybe due to allergies) and i wake up super tired. i had this for about an year, now i have some nasal drops that help (my nose swells up a bit). so finally i can get some rest. but still my nose and throat gets soar sometimes.

waking up and not being tired feels awesome.

Man it sure does!

[deleted]

I needed about six weeks to get used to the mask, since then life has become a lot easier!

Depression is the wrong word for my state of mind those days, constant bad mood i guess.

Wait, my mom, brother, and grandma have this...

I had no idea this was rare.

Look at the description.

Are you able to play sports? Does being active allow you to breath manually or do you have trouble getting enough air into your lungs?

I've always been into sports quite a lot, i was my former soccer team's captain and still go for several runs every week. Before the mask, i had a much higher pulse than my team colleagues, which affected my play.

Right now, my pulse is okay, so i can do everything normally.

As long as i'm fully awake i don't notice any effects, but when i get tired and watch tv i start snoring, which is the first noticeable symptom.

Are your dreams.. Normal?

I guess they are^{^}

I dream a lot!

I'm glad the technology exists today to help you sleep. I have insomnia from time to time, but its hardly the same thing! At least there are pills for me. ~_~

i actually imagine myself being born 150 years ago pretty often. not being able to reach my 40s is a pretty scary thought O.o

Have you ever tried polyphasic sleeping? I've heard that the uberman cycle is very helpful with certain forms of sleeping disorders and was curious if that is something that you could benefit from?

I never tried anything like that, since my device works perfectly :)

I'll have to leave in about half an hour :/

So far, this AMA was overwhelming for me, i did not expect so much recognition and so many interesting questions by you guys.

I will try to answer as many questions as possible in the remaining thirty minutes, and i'll try to get some time tomorrow, although i got some university stuff to do.

What is your sleeping Time now ?

about 7-8 hours every night, not being tired when i'm awake

but i don't have a schedule like i used to since i can sleep normally now, so i don't have to sleep more on weekends to compensate the week's lack of sleep

i really think you should redact your real name.

noob redditor here, you are right

Thanks a lot!

Good for you man! were you prescribed modafinil?

thanks :)

i wasn't prescribed anything but the machine

I think I may have sleep apnea (my dad also had it), but I don't know how to find out for sure without committing to an expensive sleep study. I would be really grateful if you could maybe help me figure out if I have it with some questions.

1.) How did you first know for sure you had sleep apnea rather than something else? In other words A.) did you notice any specific physical symptoms other than sleeping a lot/tiredness B.) what exactly they ask/do as part of your diagnosis?

2.) I even videotaped myself to try to see if anything was going on with me...would your apnea be something you could actually visually see (eg. could someone in the room see you physically struggling while attempting to sleep/breathe, or if someone saw you would everything have looked normal/calm, just you weren't breathing as much?

3.) Were there any sleep positions that made it any better or worse? (I feel like I can't breathe at all on my back, but somehow I can breathe on my stomach, and it really affects my sleep)

4.) The classic symptoms I hear for apnea are waking up in the middle of the night gasping for air, or being able to fall asleep at a moment's notice (eg. at the wheel of the car). Did these happen to you with your 'central' apnea? I don't really wake up grasping for air so I'm wondering if that's necessary to the definition.

5.) Is it true that only people above average weight or with beer bellies get sleep apnea? That applies to me so just wondering for you

6.) Lastly, what impact did you feel it had on your every day life, again other than extra sleep? Like did you feel it impacted social situations, your daily cognitive function, mood, depression, anything else?

Thanks for any you can answer!!!

I am sorry to respond that late as it takes me some time to phrase the answers.

1.) I knew it for sure after a long sleep study, i spent 11 nights in the sleeping laboratory so far, but i didn't know anything about the disorder at all, so i would have noticed it without professional help if i knew as much about it as i do now.

2.) most people with sleeping apnea snore. in my case, people recognize me struggling, 'gasping' and trying to catch breath after such a pause. i don't move around doing that, but you can hear my breath.

3.)it does affect your sleep the way you described your positioning. sleeping on your back supports the apnoe.

4.)it didn't happen at all, i always slept straight. but i snore, not all people with central apnoe do that.

5.)every gram of fat supports apnoe since it presses on your throat when you lie on the back. i lost quite some weight since i got it diagnosed because i was more active during the day and without being tired it was easier for me to motivate myself for a run.

6.) compared to now, i was in a bad mood and sometimes wasn't aware of things that happened around me. a lot of headache too.

i hope it helped!

when you think you have apnoe, you should get yourself checked, life is a lot easier with a device that supports your sleep!

uncomfortable question: can you actually die from that? or does your brain "wake up" from asphyxiation?

Due to high blood pressure, i would have had a rare chance of reaching my 40s because the chance of having a heart attack goes up drastically.

At my young age, there shouldn't be an acute danger.

Have you heard of lucid dreaming?

The ability to remain conscious while you're sleeping may be a very valuable skill for you, and it would be interesting to know the effect it has on your condition.

i've heard about it some years ago, but i didn't try it out or anything.

Guess i'll give it a shot, would be interesting if it's possible while wearing the mask!

Considering that you are able to make it to the REM phase, it seems highly plausible that staying conscious while you dream will either alleviate the problem or give you the option of managing your breathing while getting the sleep that you need.

As most people need 40 minutes to get to REM (unless sleep deprived) and oxygen is need on a much much swifter time scale. That does not seem to be a plausible solution.

i don't think at all that it could be a solution, and i'm more than happy with my device. but trying it out would be fun anyway i guess :)

[deleted]

it is pretty common, also in europe.

i just edited the description to explain why i don't have the "common" sleep apnea.

I'm afraid i can't provide you with statistics since I have actually no idea how high the percentage of people with sleeping apnea in our country is.

if i recall correctly only about 0,5% of all those people have my type of apnea, and what i know for sure is that i am the youngest one they ever had in the hospital of Linz, Austria

I'm gonna try to find some statistics, I'm out of my hometown so i don't have access to my hospital's papers, but I'll try the interwebz

Found something!

In Austria, 9-24% of the population has light forms of apnea, not causing them to be tired during the day (basically everyone who snores has that)

2-4% have heavy sleeping apnea (enough that they get tired and can't rest enough)

Are we still doing that ducks/horses thing? Or have people finally gotten sick of that. I haven't been paying attention.

me neither, gotta try a duckface foto with my mask though...

This isn't very rare in Murika, but its because people get too fat and their sleeping bodies can't cope with the fat weighing their chest down and they stop breathing.

true dat, overweight people have a lot of problems with that

I guess mine was not really a question. Umm, umm, you ever sneeze with that thing on?

happens, it's like sneezing normally :)

Sleep apnea isn't really that rare. I have narcolepsy. I'd say that's worse. At least you can remedy your condition with a machine.

about the rare thing: that's explained in the OP, and yes i'm glad i got my machine

is it not possible to deal with narcolepsy at all? :/