Sleep Apnea after cerebellar AVM

I had my AVM rupture in 2003. I’m 51 now and diagnosed with sleep apnea a few years ago. The fun of aging. I am trying to get this new implant for sleep apnea so I won’t have to use the machine anymore. The doctor gave me some equipment for an at-home sleep study. The device was on my forehead and held on there with a strap. There was a nose piece and a strap around my chest. Not the most comfortable night’s sleep. For best results, I was told to sleep on my back. This is something I can’t do because of my disability. My head spins if I lay on my back. It’s been a while since I tried to sleep on my back so I thought I would give it a shot. Big mistake, it felt like I stopped breathing 3 or 4 times during the night. It felt like in the movies when people come back to life gasping for air and coughing. That’s what it felt like. I don’t scare very easily, but that scared me. It was a 3 night test and I slept on my stomach the last 2 nights. I won’t find out the results for a couple weeks or so and I’m anxious to see what the results will be. I really don’t know what aging will be like and the challenges I will face as I get older.

Hi Michael, My friend has a smart watch that records sleep patterns, h20 levels and even correlates it with breathing so he knows how many times he wakes up. It may be better than that clunky device. Best wishes, Greg


I think we’ve got one or two other members here with sleep apnoea, so have a look around, use the search magnifying glass (use both the US and British spelling, separately) and you may find some friends. Beware that we moved platform in summer 2016 and some people found the move a bit of a leap too far, so conversations older than that we may have lost the people behind the story meanwhile.

Best wishes,


Hi Michael

This comes with a warning I’m having a negative day!

Basically you’re screwed

I ruptured in 1990. Intensive care and a lot of hospital treatment helped me to recover and I live independently. I’ve got a hole in my brain so I’ll never be complete again.
But I now have to use a sleep apnoea machine at night otherwise I don’t breathe enough. There is no request from my brain to my lungs for oxygen so I don’t breathe. Remember how people faint and some are out for 20 seconds but others are minutes.

So I continue to live independently and travel freely but at some point life will stop. There is no cure but I am using cpap equipment so that any periods where I don’t breathe at night are hopefully minimised. The problem is that I can go to sleep wearing the mask but take it off in my sleep without notice.
It took a lot of work and practice to be able to accept and use the equipment and making myself sleep on my back.
Long term life without the machine wasn’t acceptable and now with the machine it’s improved but I find it very variable and unpredictable. I’ll have crap days and some good days.
I’m in the UK and I had fantastic emergency care. The current therapy was very hard to get and I currently do not have any Neuro checks because there is nothing medically that can be done.

Best wishes

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My case is similar to yours. My brain doesn’t like to make me breathe sometimes at night. I don’t sound as severe as your case, but it’s very similar. I take my mask off at night sometimes too. I have an app that tells me how I slept and gives me a score of my night. I’m trying to get an implant so I don’t have to use the machine. I don’t know how my sleep study went yet. I have good days and bad days too. Just something we have to live with I guess.
I wish you the best