Mike Posted March 21, 2015 Report Share Posted March 21, 2015 Weird I know. This first starting happening years ago, after walking for a few minutes with my mind wandering thinking about whatever, I would all of a sudden take a huge breath as if I had been holding my breath. This was well before I ever heard of NCS or any type of dysautonomia. I would tell my mother and doctors and always heard the "it's all in your head" or "you don't think about breathing, you just do it." It wasn't really a problem back then, I would slow my walking down, concentrate on breathing, and I was fine. I went years without bringing it up to anyone again because I was tired of no one believing me. Now it seems to be a huge problem, but not when walking, now it's when I wake up in the morning. About every morning I wake up, I don't feel good so I end up lying in bed for about an hour before actually getting out of bed. When I'm lying there, I can't tell if I'm dozing off or passing out, and I keep waking back up short of breath and doing the gasping for air thing, and it always results in a bad headache. I had a sleep apnea test in 2010, and two done in 2013 along with a narcolepsy test. Everything said I was fine. I know it's not just in my head, I'm sure most of us here have heard that before, and I know the people here believe and understand what dysautonomia patients go through. Has anyone ever experienced something even similar to this? Quote Link to comment Share on other sites More sharing options...
angelloz Posted March 21, 2015 Report Share Posted March 21, 2015 I know I did this...especially at the beginning of my journey with autonomic problems. I think I would hold my breath and not realize I was doing so. I also would sort of forget to breathe as I was dozing off. If I could get to sleep at all. It is better now. I still have episodes when no matter how slow or deeply I breath it feels like I am not getting enough air. Hang in there..I have heard of others with the same issues! Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 22, 2015 Report Share Posted March 22, 2015 I have this happen too, it started before my POTS was diagnosed. I also had a sleep study and some other testing done and was told everything was fine/normal. I wake multiple times in the night seemingly gasping for air but my doctor does not believe me or tells me that I must have been having a dream. Every single morning when I start to wake up for the day I will still dose off and on before getting up but when I am almost back to sleep I gasp, as if I have forgotten to breathe. I have a lot of trouble breathing throughout the day, I am constantly short of breath and there are times when I need to concentrate on my breathing to make sure I am inhaling and exhaling...it is crazy! Quote Link to comment Share on other sites More sharing options...
Sunshinegirl Posted March 22, 2015 Report Share Posted March 22, 2015 Oh wow....yes. I don't consider breathing very autonomic anymore. I go through bouts of it. When I started doing breathing meditation, it got much better. For me, I found that it was not just a physical thing but a consciousness thing. It seemed like my mind was to preoccupied or something. I don't have sleep apnea but sometimes I wake up gasping for air. In my dreams I am drowning. The lack of breathing does not start with the dream but becomes part of my dream as I feel the sensation of what it is like to be drowning. I don't have a fear of drowning. I do a breathing meditation before going to sleep and this seems to remind my body to breath while I sleep. I do it 4-5 times a day and that seemed to stop it for the most part. If you go on youtube and get the halleluiah chorus...you inhale to the halle and exhale to the luiah. You need to find one that goes for about 10 min. There is a CD called the Mandala healing kit that comes with a great version of this. I found it at Barns and Noble years ago and used it when I taught yoga. This version starts out regular and then gets longer and deeper as it goes for 11 min. It is beautiful and a perfect breathing guide.Hope this helps Quote Link to comment Share on other sites More sharing options...
Mike Posted March 22, 2015 Author Report Share Posted March 22, 2015 bethanyh that sounds so much like me.Sunshinegirl thanks for the advise, I'll look into breathing meditation. Quote Link to comment Share on other sites More sharing options...
bellgirl Posted March 22, 2015 Report Share Posted March 22, 2015 It happens to me all the time. Singing in the choir at church does help me tremendously with my tidal volume, however I do have sleep apnea, too. It expands my lungs, so that I don't feel as if my chest is in a vice!! Love your idea of the Hallelujah chorus, Sunshinegirl!! I sang the whole Messiah in choir years ago! It was so awesome!!One night I woke up and couldn't breathe properly for a half hour, even with my Cpap, though. I also had a dream of being in a cold horse arena and not being able to breath; sure enough, I woke up NOT being able to breathe. I want to purchase a pulse oximeter, so the next time this happens, I am ready. I should have taken my B/P and pulse, but I was too busy trying to breathe!! Deep breathing does help with this...going to the beach is even better!! I have a peace that passes all understanding there. I just came back from a trip to Panama City, Florida for my mom's 85th birthday. It was wonderful, especially at sunset! Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 23, 2015 Report Share Posted March 23, 2015 I am thinking about asking my doctor for another sleep test, though I am sure he will say that it is not justified based on his "normal" findings from my prior study. I like the idea of breathing exercises, I cannot sing at all anymore and at times even a normal conversation is hard because I get so out of breath. Quote Link to comment Share on other sites More sharing options...
Mike Posted March 24, 2015 Author Report Share Posted March 24, 2015 I have noticed I have troubles when trying to speak really loud. If there's music playing or the tv is turned up to loud and I'm trying to talk with someone and having to raise my voice, I can't for long without getting some symptoms. Quote Link to comment Share on other sites More sharing options...
bethanyh Posted March 25, 2015 Report Share Posted March 25, 2015 Same here, Mike. I have a really hard time breathing and speaking if I have to raise my voice. I also have terrible chest pains (beyond my normal) if I need to raise my voice. Quote Link to comment Share on other sites More sharing options...
Lemons2lemonade Posted March 29, 2015 Report Share Posted March 29, 2015 I agree this happens. It probably has something to do with the whole "autonomic dysfunction" thing as breathing is an autonomic function. In fact, when I first started getting symptoms I often learned that I was holding my breath. I would do conscious breathing for a few minutes and then it would go away. I think it's interesting though that this was happening to people before they were diagnosed it sounds like or their symptoms exacerbated...huh... Quote Link to comment Share on other sites More sharing options...
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