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ASD and Sleep Apnea Problem

OlLiE

Well-Known Member
Hello, I wanted to ask if anyone else here has this unpleasant mix.

From the title you can guess I have both.

My sleep apnea is categorised as 'severe'.
Based on the sleep clinic results i wake up about 45 times an hour on average with peaks of up to 75.
So my sleep is a mess. I've tried all the recommended treatments, none of it helps.

I'm high functioning and gifted and have been usually good at 'masking', but as I get older it gets more and more exhausting to do.

With my sleep deficit getting ever worse I am less and less capable of masking, mainly masking irritation and frustration.
I've always been calm, never quick to anger. Lately though i feel drained and empty, the smallest thing sets me off.
I can't bear to talk, have to talk or interact with people. Loud noise that i have no control of will set me off almost immediately.

Supposedly my fight or flight instinct is switched to perma-on, to the point I don't even realise it anymore as the stress eats away at me more and more.
I have stress related chest pains on and off almost daily now at the slightest mental or physical effort.

My behaviour is understandably putting stress on my marriage.

Managing my me-time used to help, noise cancelling headphones don't work, walking barely helps.
I go camping once a month for a few days but that isn't enough any more.
I would need silent / dark / cold alone me-time for an impossible amount of time.

So i'm feeling pretty boxed in and can't seem to find any way to get out or even to improve things.
At this point i am randomly shouting at people when i get overstimulated/irritated.
I feel like i am permanently running away from the world with nowhere to hide.

Has anyone else experienced this or have any tips.
 

Neonatal RRT

Well-Known Member
V.I.P Member
Disordered/disrupted sleep patterns are common with autism, in general. Much of the research on the specific topic of apnea and autism is with children. There are specific brain waves that are associated with different sleep states, and certainly autism can mess that up for people.

Many adults, regardless of autism or not, can have sleep apnea.

Disrupted sleep will, at the very least, affect your cognition, but long-term can significantly affect your cardiovascular health and respiratory drive stability. If you've had your sleep study, have you used CPAP to help with the apnea? There are newer implantable devices that stimulate and give your upper airway muscles more tone while you sleep, stabilizing your airway, and less tendency for those obstructive problems.

If you do a Google Scholar or PubMed search for "sleep apnea in adult autism" you will get a handful of articles on the topic.

Some people respond well to L-theanine and/or melatonin supplements. My mind relaxes much better with L-theanine than anything else I've tried so far. I do snore, but do not have obstructive apnea spells. I don't have a problem sleeping, at all.
 

OlLiE

Well-Known Member
Hello, thank you for the info. I’ve done cpap, but as soon as I fell asleep I would unconsciously remove the mask, I’ve tried all types of mask and none worked. In Belgium, if you can’t wear it long enough every night you have to return the machine to the hospital. I also tried the mra (made to measure oral prosthesis that clamps to your upper and lower tears and moves your lower jaw forward and opens your throat. Despite being made to measure, it was too painful and irritating to wear. There is an experimental treatment, however it entails having surgery on the underside of your jaw to implant a (relatively large) chip with electrodes that shock your tongue when an obstruction is detected. It is powered by a battery that you have to stick to the bottom of your jaw (like charging electric toothbrush) every night. I cannot imagine that this would be tolerable for me… During the sleep clinic they also monitored my brainwaves and told me that my brain doesn’t really switch off during my sleep…
 

Jeepcarpenter

Active Member
I got the same notice from the diagnostician of my sleep study, that my brain settles or switches off very rarely, my events are only 15-18/hr though.

Have been using apap for a bit over 2yrs now and though I feel the quality of my sleep is a bit better, it hasn’t really changed much for me.. and gah.. getting used to any of the masks was utter hell.. I wound up having to go for the smallest nose pillow and just taping it on, and my mouth shut; for nearly a month before I became acclimatized to it.

I can never remember sleeping well, often up for hours overnight in my room as a child, or watching TV through the crack in my bedroom door if parents were still up.

The sleep problems don’t notably affect my daily performance, I can often go 2-3 days without, same for eating; without any discernible issue aside from muscles getting sore. And I know neither is good practice, I don’t make it habit, or rather I try to get my 7-8hrs a day but it’s usually 2-3hrs or 11-14hrs.. I prefer the 2-3 as I feel far better and have more time available to me.. the 11-14 is more common and ruins any day happening of.

In the same, those 11-14hr sleeps I can be an entirely different person if waking before ready, a complete monster/a$$hat, combative and aggressive, entirely not me and I usually have no recollection of.

I as well can’t recall having any dreams since the age of 10-11.. occasionally I might recall one having happened but it’s usually from a significant event prior to, or after/while suffering sickness or fever, which as well is fairly rare.

Don’t know if that helps any, I haven’t been given many other options aside from sensory deprivation.. which has worked at times but is hard to do in a busy house like mine.
 

Crossbreed

Neur-D Missionary ☝️
V.I.P Member
I use a BiPAP, too.
There are newer implantable devices that stimulate and give your upper airway muscles more tone while you sleep, stabilizing your airway, and less tendency for those obstructive problems.
What is that device/technique called?
 

Jeepcarpenter

Active Member
@Yeshuasdaughter Good point, having your bed inclined so that head is higher than feet -is- supposed to help, I have my bed propped about 4” higher at the head than at the foot.

I’m not sure whether a recliner is ideal as most with sleep apnea have significant difficulties on their back and ‘should’ be sleeping on their side, left side being preferable if suffering GI issues, reflux or liver problems, right side if suffering heart issues.. don’t know how accurate that is though..

‘Apparently’ even the direction your bed is oriented can cause/resolve issues.. again unknown as to validity, I have tried without much notice of difference but supposedly the foot of the bed should be directed north, the head south; though I don’t know the origin or why, all I can surmise is magnetic poles having some type of effect on circulation?

I dunno.. all I can say is the best sleep I can remember having is in a sensory tank or -sometimes- in a vacant hotel room after a few days stay with no one around
 

Suzanne

Well-Known Member
V.I.P Member
I have moderate sleep apnea with just 17 episodes, but that is due to acid reflux, which, thinking about it, I heard that is also a part of being on the spectrum ie digestive issues.

Just a suggestion, because it has helped me enormously. Vitamin B12 with is an energy booster and since taking it, my moods swings have tapered out and that was before, I started on the road of CPAP therapy, which does not improve my sleep; other than improving other things, that I would never guess was related.
 

OlLiE

Well-Known Member
Thank you guys for all the feedback, what works best for me up till now is the camping in the quiet and fresh air with no one talking to me. Regrettably I can’t do that every day :)
 

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