I have chronic OI and I know that sometimes I'll feel a choking feeling in my throat. (Which is typical for those with this) Many times it will block liquids or solids from going down or just regular breathing, but I can deal with it. But for the first time ever it happened in my sleep! The odd thing is that I was trying to move and wake up my boyfriend because I really couldn't breath. I felt myself struggling to get my body to move. I'm sure many people have had that feeling that they're brain is awake but there body isn't. To me it felt like my brain was giving out signals that my body was not receiving.

Anyways after about a minute of struggling and fighting to breath my boyfriend woke up and rolled me over and did everything he could to help me. It took about 45 seconds for me to stabilize. I have to admit that I thought I was going to die. I could actually feel myself drifting away after trying to fight to breath. My brain just wasn't getting any oxygen. And once I got that first breath of air a rush of pain filled my head. I don't know why. I'm ok now, I just felt the need to share my story.

Does anyone know anything about this and what I can do to prevent this form ever happening again?

There is a CPAP machine that keeps postive pressure air flowing as you sleep that you may get some benefit from.

Also getting a sleep study done froma sleep clinic might well be a plan. Rosie has posted lots on this subject--you might want to seach this site for her posts and read up on this.

Byt FYI YES00I have this sort of thing too! It feels like you're dying and scares the crpa of of me too! But, on the up side, I haven't died.

But it sure has made me a sick puppy. I just now--thanks to Rosie figured out what to do about this--and am going to a sleep doc next week.

Hope this helps!
Sandy

Does anyone have more information about the tight throat/choking? i had no idea it was typical for OI...

I don't know much about it either and would be interested in learning more. I was sitting at my computer a couple of days ago and all of a sudden felt like I was suffocating. I felt like I wasn't getting any breath, yet I was breathing. I always worry about blood clots because of the blood pooling and heart arrythmias so I panicked and of course that made it worse. I do get a tight feeling frequently (which can be from GERD) but this was different. I really felt like I would imagine suffocating would feel. So, I too am interested in why this happens. I guess the good thing is I obviously wasn't suffocating!!!

I read this on a MVP site or someplace--so she IS right that it's "one of the symptoms" but then again, What isn't?

My Mom has this lots. I only get it if I stand up too quick--or during those late night "spells."

But it IS very scary stuff!!! So let me be the first tos say "Poor baby!!!" If I could I'd pat your head and give you a hug--'cause I KNOW it's awful!!

All I can say is --for me--it DOES pass--and it passes more quickly if I practice my Yoga breathing stuff and am sitting down (not standing). I.E. breathe in counting slowly to 5--breathe out counting slowly to 5--that sort of thing seems to force it back to normal.

Wish I could tell you why. Don't know. Wish I could tell you what would make it stop happening. Again, don't know. If anyone does I'd love to hear it too!!!

Try your best to relax and trust that your body WILL choose to get the air it needs eventually--try to help it by deep breathing.

Know I care--Know I believe you--Know I hope you feel better soon!

XOXOXOXOXOXOX
Sandy Sims

I've been doing a lot of reading today to see what is the scientific cause of this, if they even had any. Yet again this is something else that doctors are sketchy on by here are some things that I've learned.


When this happens in your sleep they call it
Central Sleep Apnea, which is when the airway does not collapse but the brain fails to signal the muscles to breathe.

People can have sleep apnea without having dysautonomia but since our problems stem from malfunctions in our autonomic nervous system it affects us a lot more. For whatever reason our brain just fails to communicate to the rest of our body so things that are involuntary to most isn't always the case with us. ie: Blood flow, and breathing.

I've read debates going back and forth on the question "can this problem kill people" (I honestly thought I was going to die last night) Some people swear that you can't die from the choking sensation. They say that it's when your heart pumps too fast trying to get air you can have a heart attack, or when you brain doesn't receive the necessary oxygen then the brain cells start to die resulting in a stroke. There are a couple of sites that say yes of course you can die from the choking, after all we do need oxygen to breathe. Makes sense to me...

Basically whether asleep or awake or brain isn't sending out the right signal for us to breathe. That's what I've come up with today. I hope this helps some people.

I have OI and NCS and too have had this happen. i wake up from my sleep gasping for air, its like i forgot to breathe. i have done this a couple times at nite, but also a few times during the day. i told my dr and he just kinda looked at me funny and changed the subject, made me feel like a dumb ass, so i just left it at that. Rosie how would a person go about the sleep study? i mean i want one done but, i have to have a referral from the doc. what are some things i could say to convince him? why the hell should it matter to him anyway, im the one paying for it. sorry, it just bothers me when i think about that day, of him giving me that look. i have even been driving and felt the need to take a deep breathe, like i again forgot to breathe. sounds weird, but hey, it happens.

Hi jazz,

I've woken up during the night totally paralysed and not being able to take a breath, talk to wake my husband, etc. I think I'm going to suffocate.

It seems like minutes but I suspect it's only seconds and suddenly, somehow or other, my body will sort of jerk just a tiny bit and I'll be breathing again.

Rosie, FINALLY, they have opened a sleep disorders clinic on my side of the city and I will be seeing my general doc next week and getting a referral to it -- as this one will be in travelling distance for me (I have to get myself to and from and the closest one prior to this clinic opening was too far away for me to get to and from on my own). I will eat my hat if I don't have sleep apnea. I also have a theory that a CPAP machine is going to cure me of the migraine I always wake with.

It freaks me out at how cavalier docs have been when I've mentioned that I think I might have sleep apnea. They just don't seem to take it seriously. I find that attitude absolutely neglegent.

Something else just "came to me" on this subject that I thought I'd share. This has ahppened a few times now. I went to a homeopath to get an Alpa Stim machine. She immediately said I had some sort of "autonomic" problem 'cause you noticed --as I was trying to talk to her--I wasn't breathing AT ALL--and started gasping towards the end. I had noticed that, at times, when talking, I'd suddenly start running short of air--but hadn't noticed why.

There IS something to this Central Apnea thing. I'm convinced.

And it makes sense to me--I can't control my BP, blood sugar, body temperature, pulse, and all sorts of other autonomic functions--amkes sense to me that breathing would just be another one to add to the list.

BTW has any one else ever tried an Alpha Stim machine? This little device turns off jittery nerves better than anything I've ever heard of! And no side effects! it's killed my RSD pain--helped me sleep (what little I do) and kept me sane for the past year.

LOL and NO I don't work for these guys either. My daughter the shrink-- and my neuro doc with neck fusion pain both suggested it. It's not cheap--but it WORKS.

http://www.alpha-stim.com/research.html

Hi Sandy,

the subject of running out of breath and making it both difficult and tiring to talk has been talked about on this forum before.

Only two days ago I experienced an episode of this. First my voice gets weak and hard for others to hear, then I notice that I feel like I can't get enough air to expel the sounds of talking and then I just have to give up on talking all together until the episode passes.