Freaked Posted April 5, 2014 Report Share Posted April 5, 2014 These days I spend hours daily sitting in bad gasping for breath, unable to do absolutely anything. It's like torture. Can't get a hold of my specialist for love or money atm and GPs have no idea what to do for me. My oximeter normally reads 98 or 99 during these episodes (touch wood). Eventually the shortness of breath often devolves into a sort of panic attack cos I feel so dizzy and my chest gets sore, and my pulse pressure narrows to 10-25 for some reason. I try every technique i can find for hyperventilation, and I try ignoring it, but absolutely nothing makes a difference. Trying to talk or do anything seems to make it worse. Quote Link to comment Share on other sites More sharing options...
andybonse Posted April 5, 2014 Report Share Posted April 5, 2014 I'll join the club, I get these episodes all the time like I need a deep breath but cant get it, its horrible Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 5, 2014 Report Share Posted April 5, 2014 Do you know how to do meditative breathing? It can really help during those episodes whether they are POTS or anxiety related. The gasping and panti g, while it seems to make you feel better, will become a self fulfilling prophecy if you don't learn to control it. It causes your heart rate to increase, the increased heart rate causes your body to think it needs to intake more oxygen, and the cycle continues. Meditative breathing can help to ease the tension in your chest and keep a nice even respiration rate so you don't force your heart rate out of control. A good book to start with to learn how to do easy meditative exercises including controlling your breathing is "Where Ever YouGo, There You Are" by Jon Kabat-Zinn. You can find it on Amazon. Quote Link to comment Share on other sites More sharing options...
Freaked Posted April 5, 2014 Author Report Share Posted April 5, 2014 Good suggestion Katybug, but I have tried all types of slow and relaxation breathing techniques i can find, and nothing like that seems to reduce the tight chest or air hunger. It's like a switich gets flipped in my brain for AIR!! and I just don't know how to turn it off. I used to just get it after food or other things that lowered my BP, but now it's almost all the time. Really exhausting. I know a study came out recently saying that when POTS people stand up, the lack of cerebral blood flow triggers hyperventilation and makes everything worse, but this is happening just sitting up. I read a story in a newspaper about a woman with POTS who was so short of breath all the time she could barely eat, and that's getting to be how I feel. The only correlation I can find is the narrowing pulse pressure now and then. Quote Link to comment Share on other sites More sharing options...
Goschi Posted April 6, 2014 Report Share Posted April 6, 2014 I have also tried every type of relaxation-breathing technique. Most of them worked fine when it was about "normal" anxiety, anger etc. Some of these techniques I know from my pre-POTS life and I always loved them, as they really reduced overall stress dramatically. I was quite disappointed when I learned that after I got ill with POTS, my reliable old meditation techniques would literally do nothing for "breathing arousals" any more. Quote Link to comment Share on other sites More sharing options...
spinner Posted April 7, 2014 Report Share Posted April 7, 2014 I feel TERRIBLE for you. And we don't give "advice" here. But I can share my story.This is a constant issue with me and here is what ive done to MANAGE this as best I can1. clonapin has helped me overcome these scary episodes (yes its a benzo)2. LEAKY GUT SYNDROME/inflammation, food allergies is a progressive autoimmune disorder related to dyspnea--short of breath. KEEP A JOURNAL. WHEN do you get out of breath? Have you fasted for a day? Seen results? Your blood could be pooling or your body is having a continuous loop autoimmune response CAUSING the dyspnea after eating,exerting, overheating, etc.PM me if you like, this has to be fought and managed very meticulously. Quote Link to comment Share on other sites More sharing options...
andybonse Posted April 8, 2014 Report Share Posted April 8, 2014 I get mine when i get into bed at night as i get warmer vasodilation occurs so must be blood pooling or some sort of autonomic vessel control blood flow to lungs. I get it after being up right too long too and also my head feels weird when i get it light headed again blood flow imo!It ***** i hate it ive got it right now! My main symptom that i hate lol Quote Link to comment Share on other sites More sharing options...
Chaos Posted April 8, 2014 Report Share Posted April 8, 2014 http://www.cortjohnson.org/blog/2014/04/07/report-san-fran-iv-moving-forward-exercise-findings-pointing-mitochondria/If you read thru the above article you'll see some related info about breathing issues and suspected mitochondrial/energy issues. They're finding more and more info related to the physiology of what they suspect is happening. Now they just need bigger studies to confirm it. While this article is specific to ME/CFS, since there is so much overlap between ME/CFS and dysautonomia, it likely applies to a lot of us who experience these types of issues such as breathing problems, exercise intolerance, weakness etc. Quote Link to comment Share on other sites More sharing options...
Confusedguy Posted April 8, 2014 Report Share Posted April 8, 2014 I've had the same issue for a long time. My Neuro sent me to a Pulmonologist. After several tests they found I am only breathing at 52% of normal. It's worth checking out. Quote Link to comment Share on other sites More sharing options...
potsticker63 Posted April 8, 2014 Report Share Posted April 8, 2014 Could be myasthenia gravis Quote Link to comment Share on other sites More sharing options...
im4god2010 Posted September 12, 2016 Report Share Posted September 12, 2016 On 4/8/2014 at 2:32 PM, Confusedguy said: I've had the same issue for a long time. My Neuro sent me to a Pulmonologist. After several tests they found I am only breathing at 52% of normal. It's worth checking out. On 4/8/2014 at 2:32 PM, Confusedguy said: I've had the same issue for a long time. My Neuro sent me to a Pulmonologist. After several tests they found I am only breathing at 52% of normal. It's worth checking out. yeah I have had these issues also however I went to a pulmonogist and had a PFT and it came back abnormal then a week and a half later I had another one and t was normal not sure how that happens but it gets frustrating because when you are like this and you cant breath and people including doctors don't believe you it s hard to deal with just keep pushing through until you get an answer Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted September 12, 2016 Report Share Posted September 12, 2016 I'll throw my two cent's worth in here, I get this too. Ever since I was a kid. In my 20's and 30's it happened a lot at night. I would dream I couldn't breathe, and in reality, I couldn't. Last winter I had a bad cold type virus and my breathing was soooo bad. The doctor put me on Flovent, it's an inhaler. Not like albuteral (I have one of those, too, doesn't always help, though), but it's a corticosteroid I think. You have to be on it for a few days to notice a difference, but when I don't use it, boy, do I notice a difference. All these years.... Btw, my Zyrtec helps, too. Seems like mine might be an asthma/allergy thing for me, so don't know if it would apply to you. Would think yours might be more of an autonomic, blood not pumping enough oxygen through to get to your lungs. Do you have Ehler's Danlos, by chance? Quote Link to comment Share on other sites More sharing options...
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