Chiari Online Support Group

Forgetting to breathe?

#1

I’ve had this problem a lot throughout my life but today it’s happening a lot. I just stop breathing sometimes. I don’t even notice and then next thing I know I’m out of breath. I don’t know if I have sleep apnea. My mom says she’s noticed that I stop breathing while sleep so I probably do have it but… this is during the day too. I just stop breathing. I also feel air hungry. It drives me nuts. I’ve experienced this issue since I was nine years old. It just happened again as I was typing this. Help!

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#2

Geo, I too have this issue at night only. I just came to learn it in a sleep study. I was told that they suspected Central Sleep Apnea and were more sure of it because it is present in Chiari sometimes. I am still waiting for test results to see what treatment is preferred. CPAP at least but they were going to decided between BiPAP or ASV as more specialized care. I have been on night time oxygen and was told to stay on it until I get whichever machine they prefer. I also take Modanifil…all this because I told my family doctor I was completely exhausted and felt like I was just wearing out. I am 56, but have been told for as long as I can remember that it is hard rooming with me and it seems like I stop breathing a lot, then suddenly wake up gasping. So I am glad I was finally honest with my doctor… should have told him years ago. Hope you get it all figured out soon.

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#3

Geo,
I have this problem as well. I had a sleep study 2 years ago. I’ve been using a CPAP for 2 years now. I KNOW I forget to breathe during the day as well. I thought it was just my imagination. I hope I don’t need a CPAP during the day as well. When I get stressed out (which is a lot of time lately) I notice I’ve stopped breathing. It’s scary. I wonder if I need a different kind of sleep study. I have never gone to a Chari specialist, my neurosurgeon has told me that my cerebral tonsils are protruding through my back of my skull, after he saw an MRI of my head. (from a study I had a while back before having a brain aneurysm test, which I ended up having repaired with a coil and stent) I think I need to look into this more thoroughly. :frowning:

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#4

Yeah. I’m stressed out a lot too lately. I know people can start to hold their breath when they’re anxious but this is so frequent. I have to make a conscious effort to breathe or I just stop? It’s so odd.

#5

Breathing retraining may be appropriate - thorough assessment should indicate what form of therapy would be appropriate

#6

The last two years before my decompression surgery, I had this problem day and night. I had several sleep lab tests - which showed that my breathing was stopping up to 90 times an hour - but the CPAP machine never helped!!! When I was diagnosed with Chiari’s, I’ve come to the conclusion (myself) that my breathing continually was stopping because Chiari compression is on the brain stem. The brain stem controls a lot of ‘automatic’ nervous system - including your diafram! So, My diafram would stop doing it’s automatic work the longer my brain stem was getting ‘squished.’ Once I had the decompression surgery, my diafram has worked just fine.

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#7

I have had the surgery on January 10 and all my symptoms were gone the first couple of weeks but a lot of them have come back over the past couple of weeks. I know everything is going to come and go over the year, maybe longer. 26 years of a compressed cerebellum, I had a very extensive surgery so I know my nervous system is still adjusting. I have a follow-up March 25th. I’m going to see what the doctor says. Thanks everyone for your input. Will keep you posted!

#9

I too have this! Mine DEFINITELY increases during stressful times, which absolutely applies to me right now. I use a CPAP machine but I’m not sure what good it does sometimes… Might have to look into the breath retraining.

#10

Geo and Cara, I have never really thought about stopping breathing during the day until I found out about the night time problem. I now realize I do that as well, a lot. Mainly when concentrating or frustrated. it shocked me, but I am not really worried about it. When I realize it, I just start again. It was then that I realized that when I would every now and then take a shuddering like gasping breath during the day, people would always look at me in alarm. lol But I don’t think that many people realize that stopping your breathing is even possible. I guess we are here to tell them it is. But what is scary, is the fact that I have been doing this for many years and have just been lucky that I somehow was reminded to breath. The central nervous system is a funny thing in Chiari patients. I guess they call what we have Central Sleep Apnea for good reason.
It is good to hear that you have CPAP now, I may need some pointers. :slight_smile:
I am still on the oxygen at night which doesn’t bother me, what worries me is the CPAP mask head gear. I have had the Posterior Fossa Decompression Surgery and a shunt @ 40 years ago. So when they put the head gear on at the sleep study, it was so uncomfortable. It just so happened that all the straps seemed to line up with all the scars and just bug the heck out of me. I am hoping to find something with a little less straps and nasal only if that would work. Just can’t wait to get this ball rolling and move on with working on the next thing to try and recover more from a setback a few years ago when my shunt broke. Surgery is not recommended so my head already feels like it snugly in a vice sometimes, with that on it felt like someone was turning the handle all night. So I am in for another challenge.

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