tpapik Posted April 27, 2013 Report Share Posted April 27, 2013 new symptom I cant catch my breath! if I lay down I feel a little better- sitting gets worse- standing the worst! ive been to the ER twice in 2 days they look at me like im crazy because all tests came back clean!? ive been under LOTS of stress........ anbody have this or know how I can help myself with it Quote Link to comment Share on other sites More sharing options...
Katybug Posted April 27, 2013 Report Share Posted April 27, 2013 I have this. When it gets really bad in the summer (heat and humidity make mine worse), I put cold packs on the back of my neck and chest and lay flat with my feet propped up on pillows or up on the arms of the sofa so I can drain as much blood into my thoracic cavity and brain as possible. That's the only thing I have found to help when it's bad. I just real with it the rest of the time. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted April 28, 2013 Report Share Posted April 28, 2013 There has been a similar post on this topic recently.Some of us may be actually dealing with the side effects of some of the meds we're on. I had this problem while on metoprolol (lopressor) and then on propranolol - strangely enough it wasn't a 24/7 kind of issue, but I would go through periods of experiencing shortness of breath every now and then. My breathing issues are a thing of the past now that I came off beta blockers...maybe you should look into meds side effects?!Just an idea.Best,Alex Quote Link to comment Share on other sites More sharing options...
Lel Posted April 28, 2013 Report Share Posted April 28, 2013 I have a similar problem which can get pretty severe at times. Like Alex, mine isn't 24/7. When I have a severe episode I lay still with my feet propped up like Katybug and let the episode pass (however long that takes, though I don't really have an option). For the longer lasting but less intense episodes, I can generally sleep them off. If you figure out any more tricks, definitely post them for us! Luck Tipapik : ) Quote Link to comment Share on other sites More sharing options...
margiebee Posted April 28, 2013 Report Share Posted April 28, 2013 My younger brother is not diagnosed yet, but he shares very similar symptoms to me (OI, syncope, all the other POTSy issues)The one thing that has always differed between us is that he suffers with severe shortness of breath, a symptom I don't generally have, especially when doing activities like running. His doctor determined it is not asthma, suspected a vocal chord dysfunction but that was also not quite it. This, along with the fact that he describes his heart "racing" at the same time, leads me as well as my parents to suspect it is related to POTS. His doctor was initially dismissive of this theory because "young men don't get POTS" but my doctor suspects that he does have it, and that his breathing issues are related to tachycardia. He has always done a lot of things to try to correct this himself such as elevating his feet. He even used to stick his legs in ice after running claiming that this helped, I'm assuming perhaps it helped with the venous pooling. Hopefully once he is tested for POTS we will know if it is all related or not! Quote Link to comment Share on other sites More sharing options...
tpapik Posted April 29, 2013 Author Report Share Posted April 29, 2013 my brother in law whos now 19 was diagnosed with severe POTS at 17..... its not that un common as most may think Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted April 29, 2013 Report Share Posted April 29, 2013 I'm probably the biggest sufferer of this scary symptom. It's believed to caused from a drainage of blood from the lungs. I have a huge poll with about 80 responses on here from about a year ago. Everyone says their triggers, how theirs feels and what meds make it worse or better.. Try running a search for breathing problems or loom under my older posts. I suffer from it so bad thats i'm on disability and homebound from that symptom.. There are generally two type one is like a breathlessness sometimes with chest discomfort and another is like we forget to breath.. I really believe its from autonomic nerve damage to our lungs.. See a rheumatologist and get checked for autoimmune issues and not just blood testing.. Quote Link to comment Share on other sites More sharing options...
Lel Posted April 30, 2013 Report Share Posted April 30, 2013 Hi Margiebee,If your and your brother ever discover tips to help with breathlessness while running, please post it. I have had my biggest episodes while at physical therapy trying to do (very) mild strength training. I also use to be a distance runner. Weirdly enough, I usually have more problems right after I run. Have you guys noticed this? If anyone could figure out a trick, that'd be awesome! My PT has recommended that I try working out in full compression hose as opposed to just knee highs. If it's a miracle worker, I'll let you know. Quote Link to comment Share on other sites More sharing options...
Lel Posted April 30, 2013 Report Share Posted April 30, 2013 Hi Rich, I've been searching for the poll you mentioned. Unfortunately your old posts only go back so far, and I was unsuccessful in finding it under breathing problem. Do you know any other key words that I can try in my search? Thanks. Your poll sounds super interesting. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted April 30, 2013 Report Share Posted April 30, 2013 I'm not currently taking any meds (regularly, that is). So my breathlessness is not from that. Sometimes food or chemicals trigger it, or carrying objects. The symptoms comes on like a light switch and I don't always know what triggered. If it gets too bad where I think I'll become fainty then I take a half of a hydrocortisone. This really helps me with breathlessness and then the concurrent high HR. Good luck Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 8, 2013 Report Share Posted May 8, 2013 Here is the link to the polls: http://forums.dinet.org/index.php?/topic/20096-part-2-dysautonomia-breathing-related-issues-and-treatments/ http://forums.dinet.org/index.php?/topic/20049-dysautonomia-breathing-related-issues-and-treatments/ Quote Link to comment Share on other sites More sharing options...
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