StayAtHomeMom Posted May 3, 2017 Report Share Posted May 3, 2017 I know shortness of breath can be a symptom of POTS. My question is, is it chronic and constant? I have felt the need to take a deep breath every few minutes for going on 2 years. When laying down it is easier to attain, and when standing the sensation that is screaming to take a deep breath will get worse and attaing it is almost impossible. The intensity varies based on position, day, and possibly temperature. This breathing issue was the reason for me to seek medical care in July 2015. It started after a short run of less than a mile. It is almost like the bottom third of my lungs are not working during regular breathing so I have to inhale deeply to get it to expand and make me feel better. My pulmonolgist does not believe it is my lungs, ENT does not believe it is my sinuses, and my Chiro is flummoxed.... well most of my docs are flummoxed. I have been on propranolol and it lowers my average heart rate but it doesn't seem to help any of my symptoms. Some symptoms feel worse while on it. And my breathing feels awful like it is half my lungs instead of a third. Every medicine I have taken since this started has not made my breathing issue better. They even tried xanax and another anti-anxiety, it didn't help my breathing at all. The best the xanax did was keep me from hyperventilating due to fighting to get a deep breath. I am sorry this is long and maybe confusing. My brain is mostly shutdown due to a POTS flare up these last few days. I am hoping maybe someone may have some insights. Quote Link to comment Share on other sites More sharing options...
marcus99 Posted May 3, 2017 Report Share Posted May 3, 2017 I do not feel like I need specifically a deep breath, but I do have much more need for air than normal. I also notice in the morning I need way more air than later in the day. I am using a "Frolov breathing device" to train my lungs, I have to say it seems to be helping. It is basically breathing with air resistance, it mimics high-altitude breathing. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted May 3, 2017 Report Share Posted May 3, 2017 Hi StayatHomeMom. Sorry to hear about your breathing issues. Did they do an echo of your heart, check pulmonary pressure, PFT, 6 minute walk test, X-ray? What kinds of tests did your doctors run? I ask because my PFTshows decreased lung capacity and a low DLCO score so my lungs don't take the oxygen from the air and transfer it to my blood very efficiently. While researching for me, I ran across a ton of stuff it could be, but if they ran tests, it could just be the POTS. Do you have any other medical issues like autoimmune? Is your full diagnosis POTS? I don't have a lot of answers, but maybe I can help you some way. Maybe someone else on here has more experience with lung / breathing issues. I have just started on this leg of the journey. I breathe better too when laying down. I think that may have something to do with cardio. Have you seen a cardiologist? Hope you feel better. Kim Quote Link to comment Share on other sites More sharing options...
Weyland Posted May 3, 2017 Report Share Posted May 3, 2017 Did your breathing get worse after starting the propranolol ? That beta blocker can definitely affect your breathing. It made me feels like I had asthma . Others on this site have experienced the same with this medication. I also have breathing problems with my pots.... Quote Link to comment Share on other sites More sharing options...
angelloz Posted May 3, 2017 Report Share Posted May 3, 2017 My breathing problems go in waves. Sometimes struggle for weeks then not so much, others times varies by time of day or activity. I have been having more problems lately and do notice humidity makes things worse for me this spring. At the beginning of my illness I too only felt breathing was better when laying down. As KiminOrlando said, maybe rule out cardio issues? Keep at it until you feel safe and that it is just pots related. Quote Link to comment Share on other sites More sharing options...
StayAtHomeMom Posted May 3, 2017 Author Report Share Posted May 3, 2017 Kim: I have had an echo, 2 chest xrays, chest ct with contrast, six minute walk, full pfts, albuterol breathing test, the breathing test that checks for inflmmation. They have not done the pulmonary pressure but considering everything was normal I suspect that is why they didn't. I noticed my dlco is a little low but the doc says it is normal. Also had EKGband 24 hour holter monitor. The diagnosis that I have is POTS (not looked for underlying cause yet), kidney stone in rt kidney, fatty liver, mild chronic superficial gastritis, low vitamin D, polymorphic light eruption, rosacea, acne (finally have a handle on because of accutane). The POTS diagnosis I found and was confirmed in Janurary with a tilt table. Did they 24 hour urine test and it was negative for hyperPOTS. Bladerunner: it does feel worse on the propranolol I think but it could be environmental because I haven't managed to be on the reccomended dose more than 2 weeks. My thing is the breathing problem is always there just varies with intensity, anyone else have that? Or is it always in waves? Quote Link to comment Share on other sites More sharing options...
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