lalalisa Posted February 9, 2012 Report Share Posted February 9, 2012 Hello,I've experienced shortness of breath as a POTS symptom off and on but it's been really intense for me since July. I'd love an explanation of this symptom. What do most dr's say? (I called Dr. Grubb but haven't heard back) I find it really disturbing - even though my dr's don't seem to think it's a concern, it feels concerning to my body. I thought maybe if I had a really good explanation that this would help me deal with it better. =)Thanks for any input!Lisa Quote Link to comment Share on other sites More sharing options...
fiona-jane Posted February 9, 2012 Report Share Posted February 9, 2012 i was told that it's called 'air hunger' - i get this when my lungs are clear and my asthma is not playing up so theres so i'm not technically short of breath, my body just thinks i am cos of the reduced oxygen levels in the brain that happens when blood pools. so your body makes you feel short of breath to try and get more oxygen to the brain but it's futile cos theres just not enough blood running around the system to deliver any more so the feeling of being short of breath can often last a long time (in me during my bad pots days this can last for days).as long as theres no other reason why you're short of breath (eg asthma, chest infection etc) then i wouldnt worry about it. i have a little pulse ox machine that i use to check my heartrate but i find it reassuring to check my oxygen levels when i get very breathless as my levels are never as low as i think they are... like today, i felt really breathless this afternoon but i saw that i was at 95% oxygenated (100% is perfect) and so although thats a little low its still well within safe levels.maybe getting one of these would help you too? you can buy them quite cheaply on ebay fi xx Quote Link to comment Share on other sites More sharing options...
rubytuesday Posted February 9, 2012 Report Share Posted February 9, 2012 I have asthma but this sensation was not my typical asthma attack. It started over course of summer (or so I'd noticed) few years ago with me. When I had follow up with my PCP I had mentioned to her that I thought it was taking me unusually long to recover from June's surgery or anesthesia as I just didn't feel like I was able to get in a good breath. She ordered pulmonary function test at local hospital here in boonies and pulmonologist interpreted it as my asthma being out of control. He'd put me on all kinds of things that were making things worse. (I discharged him, found another who listened to me and over cooler spring months I do know if I just adapted or if things got a bit better). That was 2007. When I went to new immunologist at University (who also is allergist/pulmonologist), I went for immune deficiencies but she ran the same test and showed me the test, explaining how I had vocal cord dysfunction (I have had asthma all my life), and sent me to otolaryngologist who scoped me and confirmed. He said the throat was very very red/dry/inflammed and vocal cords were closing tight when I breathed when they normally should be opened. It is also called 'upper airway obstruction'. (I had laryngitis develop and present at the time as well).Curious, I took a copy of the pulmonary function study to the immunologist at my next visit (as it sure did look a lot like the one she had run). She said it was vocal cord dysfunction back then too. She said many doctors miss this and mis-interpret it as asthma, which is why those meds do not help. It is important to recognize the difference as triggers for both can be the same, but if I have to use my rescue inhaler for asthma (coughing irritates the vocal cords and sets them into spasms you don't really feel as spasms--just as not getting air or change in voice control/pitch/tone/quality). I had to learn rescue breathing exercises to use for exercising and if I need my rescue inhaler for asthma, I have to do these rescue breathing techniques first because the inhalant rather than entering the lungs, would instead deposit itself atop closed vocal cords.BTW, my pulse ox is always good. This should be checked out. (I'd also had echocardiogram that showed small pericardial effusion and minor things consistent with age. Chest x-ray showed COPD and I've never smoked). Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 9, 2012 Author Report Share Posted February 9, 2012 Thank you both for your input! Fiona-Jane: The air hunger theory sounds interesting and very possible. Whenever I'm at the dr. my Oxygen levels look great. I may get a sensor though now knowing they are easy to get on ebay. =)ruby Tuesday: Thanks for your story of all you went through with testing for this. Wow! I've considered asking my PCP to send me to a pulmonologist but usually chicken out. I do have asthma flare ups but the shortness of breath is constant and seems to be a different sensation. I wonder how common your diagnosis is. Interesting!!The first time I experienced the shortness of breath was right after my daughter was born (I had a C-section). It came on suddenly and lasted for many months - maybe even a year. I'm currently in a flare up that has lasted 8 months now. It's amazing the symptoms we get used to, well sort of used to!Thanks again!Lisa Quote Link to comment Share on other sites More sharing options...
Elfie Posted February 9, 2012 Report Share Posted February 9, 2012 The air hunger explanation was what I was told, although I've had a pulse ox and my levels are fine during the episode. Still, the pulse ox isn't measuring oxygen in my brain! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 9, 2012 Report Share Posted February 9, 2012 thoratic hypovolumia makes chemoreceptors freak out = breathlessness. People ask this quite often. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted February 9, 2012 Report Share Posted February 9, 2012 After talking to many people about their breathing problems, I've come to relieve that some people have like myself have have two breathing problems. 1 is typical like Asthma or COPD and the other problem is completely POTS related. There has been research on this and it was found that there is hypocapnia (is a state of reduced carbon dioxide in the blood) http://ajpheart.physiology.org/content/291/2/H904.full.pdf and it's theorized that it's from chronic hyperventilation. It maybe be some kind of hyperventilation but hyperventilation is related to various different lung dysfunctions. This follows what Fiona-Jane was told because this leads to cerebral hypoxia. Only problem is they say even severe hypocapnia is well tolerated according to wikipedia. My breathing problems are awful and not well tolerated lol I'm trying real hard to figure it out and how to fix it.. Quote Link to comment Share on other sites More sharing options...
jenglynn Posted February 9, 2012 Report Share Posted February 9, 2012 This was interesting to read... because I suffer from shortness of breath, from time to time. Now, due to the amount of syncope and the very limited time I can sit upright or stand (1 min or less) I am a lot less active, so I only really notice it anymore after any exertion- because I can't walk, I crawl... and when I am talking. I am not sure how everyone else discovered their shortness of breath, but quite literally it wasn't there one day (never had ANY asthma or breathing or related problems EVER at any time) and I woke up the next morning and it was there. It happened THAT suddenly. I have to say, of all my symptoms, it is one of my scariest, or at least most uncomfortable. Not fond of the syncope spells either but only because I am constantly getting injured... but I developed a whole new level of sympathy AND empathy for people who suffer from any kind of breathing problem- because to have to gasp for air is one of the scariest things I have ever experienced.Thanks,Jen Quote Link to comment Share on other sites More sharing options...
issie Posted February 9, 2012 Report Share Posted February 9, 2012 I started noticing more issues with it about 5 years ago (have had POTS much longer than that). I started having problems singing - one of my favorite things to do. I used to could sing and fill the room but, started having severe dizziness and not enough breath to project. Now, instead of standing to sing - I have to sit and that is not good because it changes the way you sound. (Ever notice that singers always stand.) At the same time, I started having trouble even carrying on a conversation. I don't know what changed all of a sudden - but, it is an issue. I do the air hunger thing too. Sometimes, it's like I'm smothering. Then I hyperventilate and it's not something I can consciously control.Issie Quote Link to comment Share on other sites More sharing options...
lalalisa Posted February 10, 2012 Author Report Share Posted February 10, 2012 Thanks everyone! It's at the least helpful to know that many others of you battle with this - although I wish you didn't!!! It really is probably my most disturbing symptom as well. You just can't really shake it or get your mind off of it - it's just not that simple. As some of you mentioned mind seemed to show up over night as well. So interesting!!! I lived with POTS for about 7 years without it and then one day it was there!Thanks again!!Lisa Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted February 12, 2012 Report Share Posted February 12, 2012 thoratic hypovolumia makes chemoreceptors freak out = breathlessness. People ask this quite often.I think thoratic hypovolumia is very true but I don't think it's the chemorectors. Where did you read that? I read the chemoreceptors handle respiratory rate, so if they were freaking out they would increase my respiration rate. When my breathing problem happens my chest just gets extremely tight and it seems like the air is not saturating when the saturation is in reality very good nearly 99%. Some how this thoratic hypovolemia is feels is dehydrating the lungs, not sure if that's true but it feels that way. Some people who also have this feel like its like the energy of our lungs (ATP) is just giving out, almost like an acute Mitochondrial issue in our lungs... How we will ever prove this I don't lol Quote Link to comment Share on other sites More sharing options...
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