pink1975 Posted April 18, 2017 Report Share Posted April 18, 2017 The past several weeks I have been having a doozy of a flare but as it gets worse I have been noticing an increase in shortness of breath. Since it is spring and I have asthma and allergies I assumed that was flaring as well and have been taking my puffer like crazy. Yesterday I felt so bad that I was considering a trip to ER. I realized I was pooling more than usual so I put my feet up on my desk. It was almost immediate that my shortness of breath was relieved and I felt much better. I think I already know the answer, but wanted to run it by others, could the shortness of breath be POTS related and not asthma and has anyone else noticed this same type of relief simply by putting their feet up? Also suffering a lot of coat hanger pain and wondered if this too was caused by lack of blood due to it being all pooled in my extremities. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted April 18, 2017 Report Share Posted April 18, 2017 Hi @pink1975! I'm all happy, noticing you don't live terribly far from me. I'm closer to Rice Lake. I have sometimes have shortness of breath when standing, depends on how bad of a day I'm having. It's relieved by putting my feet up. Quote Link to comment Share on other sites More sharing options...
pink1975 Posted April 18, 2017 Author Report Share Posted April 18, 2017 Hi @BuffRockChick. Where are you located? North or south of Rice Lake? Thanks for the reply. I thought that it would make sense about putting the feet up but since I also have asthma I wondered a bit if it was just a fluke. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted April 18, 2017 Report Share Posted April 18, 2017 South of Rice Lake. Pretty much middle of nowhere! LOL! But isn't everything out here?! Where do you go for treatment? Are there any good doctors around here? I'm not diagnosed with POTS yet, I have an appointment with my PCP tomorrow. I'm sure I'll end up with a referral, but no idea where too. Quote Link to comment Share on other sites More sharing options...
pink1975 Posted April 18, 2017 Author Report Share Posted April 18, 2017 Lol, you are right everything here is in the middle of nowhere. I see Dr. Christina Hyser at Essentia Health in Hayward. I spent years seeing literally everyone it felt like. I would mostly get told it was anxiety or all in my head or stress, blah, blah, blah. Finally on one of the dozens of ER trips I got a Dr. (who unfortunately just retired) who felt that my heart rate issues were something electrical. Of course I googled and brought what I found to Dr. Hyser who agreed that it was likely. She referred me to a cardiologist who did a bunch of tests including a poor man's tilt (where you take your heart rate and blood pressure sitting and then standing) and felt that this warranted a closer look. I then got referred to cardiology at St. Mary's in Duluth. I got a battery of tests on my heart which showed a healthy heart and then I had a tilt table test which I failed spectacularly in 30 seconds and here I am. Dr. Hyser is awesome and has been one of the only doctors who hasn't blown me off. In the course of searching for why I felt so yucky all the time I found out I also have celiac, asthma and fibromyalgia as well as dozens of allergies along with my POTS and she is awesome with all of it. I have been all over including Marshfield Clinic, Mayo in Eau Claire, numerous in and out of network specialists and so far the best have been Dr. Hyser and everyone at St. Mary's/Essentia Health in Duluth/Hayward. Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted April 18, 2017 Report Share Posted April 18, 2017 Uggh, I've gotten the "all in your head" too, before I noticed the tachycardia. Trying again. I will keep Dr. Hyser in mind. Thanks! Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted April 18, 2017 Report Share Posted April 18, 2017 I get a lot of shortness of breath, too. I, too, thought it was my allergies, mild asthma possibly. I used my Flovent inhaler for a while, it was helping, but I was still having some symptoms. I tried taking a Sudafed (just one) to see if it would help, and it did! So now, with the idea of Sudafed being a vasoconstricter, I realized that it was probably due to POTS more than it was my allergies. My heart rate gets really low sometimes, as well as my bp and the Sudafed gives my blood vessels a little boost and helps my shortness of breath a lot! Just an idea! Quote Link to comment Share on other sites More sharing options...
Weyland Posted April 18, 2017 Report Share Posted April 18, 2017 Pink1975 , I have pots and recently been having asthma type breathing problems lately . Did you get diagnosed with asthma after you had pots ? What kind of doctor diagnosed your asthma ? What kind of meds did they give you for it ? Thanks Quote Link to comment Share on other sites More sharing options...
pink1975 Posted April 19, 2017 Author Report Share Posted April 19, 2017 Bladerunner, I was diagnosed with asthma before POTS. I take singulair daily and have xopenex for attacks. Xopenex is levalbuterol so it is kinder on the heart, doesn't make it race as much as plain albuterol. I went to a pulmonologist for diagnosis and I think the test was called a methacholine challenge. Quote Link to comment Share on other sites More sharing options...
cmreber Posted April 19, 2017 Report Share Posted April 19, 2017 I tend to have a lot of shortness of breath when I get flares, though I don't have asthma, so I think mine is purely POTS related. I have hyperPOTs, so I think that mine has to do both with blood pooling and the adrenaline dumps that come along with my sympathetic nervous system briefly taking over. I do find laying down/putting my feet up helps a lot; sometimes I need to remove myself from any sort of stimuli, and sometimes I actually need to distract myself with Netflix, etc. It's actually been awhile since I've had a really bad flare, and the worst one came a couple of years ago right before I discovered I needed my gallbladder out. I had shoulder/neck pains at the time, but mine was associated with gallstones and the inflamed gallbladder. Quote Link to comment Share on other sites More sharing options...
TCP Posted April 19, 2017 Report Share Posted April 19, 2017 You're not alone, I get very short of breathe even after minimal exertion. I had a lung function test and my lungs had apparently shrunk as compared to previous x-rays. My lung volume was down and I really struggled with the spirometry test. Quote Link to comment Share on other sites More sharing options...
Morrolan53 Posted April 19, 2017 Report Share Posted April 19, 2017 When my POTS was at its worst, I felt like I was suffocating. Now I still get it occasionally but it's always hard to tell if it's real asthma or POTS. I find drinking more water and lying down helps a lot. Quote Link to comment Share on other sites More sharing options...
Don Posted April 20, 2017 Report Share Posted April 20, 2017 I served in the military for 6 years competing in marathons and triathlons. I got out in '09 on a medical retirement. It was around this time that I started to develop symptoms of dysautonomia. I was diagnosed with asthma and nocturnal hypoxia (I used oxygen at night for several years). Sometimes, I get shortness of breath and extremely bad chest pain. It's almost like somebody kicked me in the chest. I complained to my doctor that sometimes I'll just stop breathing without realizing I've done so. When I catch myself, I'll take a deep breath and begin a regular breathing pattern again. Does this sound familiar to anyone? Quote Link to comment Share on other sites More sharing options...
BuffRockChick Posted April 20, 2017 Report Share Posted April 20, 2017 When I have shortness of breath, it's easy for me to hyperventilate without noticing and then stop breathing for a couple minutes. Interestingly, that slows my heart down and relieves many of my symptoms. Is that what you're experiencing @Don? Quote Link to comment Share on other sites More sharing options...
Don Posted April 20, 2017 Report Share Posted April 20, 2017 It's almost like I'm unintentionally holding my breath. Then I realize I'm doing it and catch my breath. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 20, 2017 Report Share Posted April 20, 2017 Don--welcome to the forum. Others have described that symptom here on the forum. You might find it discussed in previous topics. Quote Link to comment Share on other sites More sharing options...
yogini Posted April 20, 2017 Report Share Posted April 20, 2017 IF putting your feet up helps, have you tried compression stockings? They help with pooling Quote Link to comment Share on other sites More sharing options...
pink1975 Posted April 21, 2017 Author Report Share Posted April 21, 2017 I also have the issue with either feeling like I'm holding my breath or that I need to consciously tell myself to breathe in and out. It is weird. It's like my body forgot how to do it by itself sometimes. I have tried compression stockings but found them to be super uncomfortable although I am looking into the footless ones currently. Quote Link to comment Share on other sites More sharing options...
angelloz Posted April 23, 2017 Report Share Posted April 23, 2017 Don, I did this for the first couple of years..less so now. Sometimes I would be standing doing the dishes ( or trying to ) and realize I was holding my breathe for no reason. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.