andybonse Posted April 12, 2014 Report Share Posted April 12, 2014 Hello,A lot of people get shortness of breath but mine is like:ill be sat up and the longer im up or stood up ill feel like my chest is dry inside like no blood and it gets a bit tight and cant get deep breaths and feel lethargic, ill lay down and within 10 mins it will be a lot better.I can only imagine bloods slowly pooling and the veins and arteries in the lungs are getting tighter and tighter reducing blood flow to keep a decent pressure?Its horrible its literally my worst symptom!!!! Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted April 13, 2014 Report Share Posted April 13, 2014 that sounds awful. Could be physical. It kind of sounds like a panic attack. Any anxiety when this happens? Quote Link to comment Share on other sites More sharing options...
andybonse Posted April 13, 2014 Author Report Share Posted April 13, 2014 I can assure you its not anxiety or panic related purely physical! I wish it was anxiety. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted April 13, 2014 Report Share Posted April 13, 2014 well at least you've ruled out something. Guess it sounds like a trip to the dr. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted April 13, 2014 Report Share Posted April 13, 2014 I find that when I have to sit for a long time, I will get a strange sensation in my chest, almost like an empty feeling? And I'll be gasping for breath, just sitting and I'll feel really bad and want to lie down. Mostly it will be when I'm in a meeting or something and sitting still for ages, and I just have to try and push through. It's really unpleasant though. Maybe you should talk about it with your doctor. Quote Link to comment Share on other sites More sharing options...
dkd Posted April 13, 2014 Report Share Posted April 13, 2014 Mine is more like a pressure/tightness-like my lungs can't expand enough. I feel it all the way from the bottom of my sternum up into my throat. I wonder if it's muscle related? Like a muscle cramp??? It's mostly when I stand, but can be when sitting also. I don't have it when lying down or when I get up in the morning. I had a pulmonary function test at my regular doctor's office and it said "suggestive of neuromuscular disease" so she sent me to a pulmonologist. He repeated the test and said it was normal-???? So, I just gave up on trying to figure it out. I did buy a finger pulse-oximeter that measures your oxygen level on your fingertip and mine is always ok--so that gives me some peace of mind that I'm probably ok even though I feel like crap-haha. Quote Link to comment Share on other sites More sharing options...
TCP Posted April 13, 2014 Report Share Posted April 13, 2014 I'm getting more restricted breathing and recent tests showed reduced lung capacity. I get very out if breath even doing minor things. Along with tachycardia it's quite unpleasant. Not sure what's best to do to improve it. Quote Link to comment Share on other sites More sharing options...
gjensen Posted April 13, 2014 Report Share Posted April 13, 2014 I have a variety of triggers and seemingly no trigger. The one that troubles me the most is like someone flips a switch. I can be lying down, sitting up, standing . . .does not matter. Something changes. Something I thought was interesting is suddenly my HR will become subdued. I do not think it is the cause because it does not always happen first. I do not know how to explain it. I just suddenly feel different, and it does feel like someone flips a switch. The trouble breathing with this is awful. Very labored, and my oxygen level does drop. It has never dropped to dangerous levels, but a measurable difference. I will be running at 93/94 instead of my normal 98/99. Sometimes it lasts for a short time, other times it can last a long time. The longest as been all day. I also get some grief associated with reflux on occasion. Then sometimes I wonder if I am having an allergic reaction to something. My throat and nose will tighten up etc. dkd . . . I suspect that I would test differently depending on when you tested me. I am never the same.Then of course the common orthostatic shortness of breath.And I will wake up having trouble catching a breath, and issues with the sleep transition.Early on these symptoms could progress into an anxiety attack. After hours of it, it can start getting to you. Generally, I do not get to worked up emotionally over it, but occasionally it does bother me. Depends how bad it gets.The breathing has been a big deal recently. It gives me more trouble at times than others.My "worst symptom" changes from week to week. Quote Link to comment Share on other sites More sharing options...
andybonse Posted April 13, 2014 Author Report Share Posted April 13, 2014 I believe this article corresponds with what i am feeling:http://www.ncbi.nlm.nih.gov/pubmed/15768201It states perfusion in part of the lungs may be less or altered which would of course happen and I believe this is my case!Thanks Dr Google haha, my lungs are fine etc, oxygen levels usually normal. Quote Link to comment Share on other sites More sharing options...
lejones1 Posted April 13, 2014 Report Share Posted April 13, 2014 Andybonse, I get that too, the shortness of breath from being upright. I've always thought it felt like I had a bunch of weight on my chest or something, like it takes a huge amount of effort to breathe. It's very different from the shortness of breath that can come on at any time.I got it during my last tilt table test and mentioned it to the lab tech, who knew quite a bit about POTS. And he said a lot of people reported it and, like the article you found mentions, that it has to do with lack of blood flow to the chest. Nice research! Quote Link to comment Share on other sites More sharing options...
Mermaid Posted April 13, 2014 Report Share Posted April 13, 2014 Yes, get this too, standing and sitting. Almost feels like suddenly my body forgets to breathe by itself and I have to take a deep breath and get air in. I think upright it's to do with lack of blood to the chest, as Andy proposes, and sitting, no idea. Quote Link to comment Share on other sites More sharing options...
andybonse Posted April 13, 2014 Author Report Share Posted April 13, 2014 mines like i feel the need to deep breath but cant get the deep breath or satisfy lol its horrid :/ Quote Link to comment Share on other sites More sharing options...
Raisin Posted April 13, 2014 Report Share Posted April 13, 2014 Fascinating. I had to sit on the floor while making toast because I was feeling oxygen deprived as you describe. I have 40% blood pooling when sitting up (not even standing yet). Ergo, does that mean it may be pooling in the bottom of my lungs (where we take in less ventilated oxygen) or perhaps it is not getting to the lungs? Either way it would form an imbalance of ventilation/perfusion I suppose. I do notice that midodrine helps me for about 3 hours and then it will start happening again on the bad days. I feel like a wind up toy....add midodrine and watch her go! Lol Quote Link to comment Share on other sites More sharing options...
andybonse Posted April 13, 2014 Author Report Share Posted April 13, 2014 maybe I should give midodrine a go again when im on my full dose of florinef, might make a world of difference. Quote Link to comment Share on other sites More sharing options...
Raisin Posted April 15, 2014 Report Share Posted April 15, 2014 It does make a difference for me AndyBones. I am considering Florinef as well. So sensitive to meds though. Hard to find the right combo. Quote Link to comment Share on other sites More sharing options...
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