Shortness Of Breath

[ericajay]

Hi everyone,

thanks for all of your thoughtful posts. I am new here, I was diagnosed with POTS almost 2 years ago, and am seeking you all out now as I have been in a big slump for a few weeks now. I've been managing fairly well, but have occasional days/weeks of feeling lousy and am in probably the worst slump so far.

My main complaint is that I feel like I am never getting a full enough breath, or enough oxygen. I find myself catching my breath between words much sooner than I feel like I should have too when I'm talking. And no matter how hard I try, I don't feel like I am filling my lungs- like I never get a satisfying breath.

Does anyone else have this problem with POTS? Should I be more concerned about this than just annoyed?

I feel like there is so much I don't understand about POTS- it's so frustrating and confusing sometimes.

Thank you!

erica

[JeffKohrman]

Throughout my life, I've never thought it odd to constantly be out of breath. The way I deal with it is to concentrate heavily on making very slow deep breaths, or holding my breath for a few seconds, then trying to breath slowly.

I don't know, it seems to me that every persons situation varies greatly, so what works for one may not work for others.

I'm sure someone on this forum has some ideas though, so don't lose faith!

[ericajay]

do you even feel out of breath when you're not doing anything? I'd understand it if I was walking or moving, but I even this week feel winded just sitting down.

[JeffKohrman]

On a good day for me, I can catch my breath after about 30 minutes to an hour of sitting and relaxing. As I'm typing this, my breathing is pretty shallow. Typing is also a strenuous activity for me, so that may have something to do with it. What are you thinking about? Anything stressful? Try to clear your mind, and just focus on deep breathing exercises.

[ericajay]

I am stressed...but was feeling this way before I got stressed this week.. for about a week now i've been feeling really short of breath, and worrying about it.

I think I manage stress really well...I sometimes am able to do more under stress because I forget how lousy I feel.

My breathing right now is really shallow, and wide open mouth breathing if I'm not thinking about it and trying to concentrate on it.

If I drink water and take a big gulp, I have to take a panicky breath as soon as I swallow because I feel like I'm totally out of air.

[dsdmom]

I know EXACTLY how you feel. I have the exact same sensations. Even what you said about swallowing water. I hate this symptom more than any others. It was my first symptom 3 years ago and it was really really bad for almost a year. I went to doctor after doctor and had every test imaginable and they couldn't find anything wrong. yes, I heard 'anxiety' more times than not, but interestingly enough it was my psychiatrist who was adamant it was NOT anxiety. Long story short, there's been no explanation for this and I have just chalked it up to ans issues. It is much better than it used to be just I recently had a flare for some reason and it reminded me of how awful it is. Some things can set it off - like some medications - or weather - or who the heck knows what. I just hope that it will go away...

[erik]

If I drink water and take a big gulp, I have to take a panicky breath as soon as I swallow because I feel like I'm totally out of air.

I've had periods of time where I got this response especially. For whatever reason, I've been pretty free of it lately. I don't use it very often, but I've got an albuterol inhaler that I was prescribed after a lung function test demonstrated some compromised lung capacity (and my experience somewhat fit exercise induced asthma). As others on here can also indicate, sometimes the asthma isn't really asthma but regardless the inhaler has been helpful at times. I also get the sense that something is going on chemically that induces this "air hunger" at times. But since it is so pervasive for you I would generally recommend consulting a doc about it, even if it ends up just being another POTS thing.

[MomtoGiuliana]

I've had periods of this symptom too. Are you adequately hydrated? Is your iron level good? These things could also influence this symptom I think. But it can be caused by POTS too.

[potsgirl]

Hi Erica,

I get these symptoms, too. I've been really short of breath lately, and I'm sure it's related to my low BP, which has been worse than usual lately. Today, just being up for 10 minutes, I had 68/54 and 128. Needless to say, I felt horrible. How's your BP and HR? Hope you feel better soon!

Cheers,

Jana

[Elenapap11]

Hi Erica.I've also had POTS for the last two years.Shortness of breath is one of the first symptoms that appeared.It always led to increase of heart rate and i felt like fainting.I have found out that if i don't allow myself to get scared i soon feel better.The first year i was so afraid that i'll stop breathing and that i might suffocate that i made it even worse.Now that i know it's part of my POTS crisis i am dealing better with it.Some things i do are the following:

1.I drink small sips of water

2.i lie down with my feet up

3.I have someone to rub my back and press me on my upper spine(at the height of the lungs) which helps me take deeper breaths.

Try to monitor your blood pressure and heart rate when you get shortness of breath.If you have low blood pressure,lying down will definitely help you.Remember that stress will worsen your symptoms so try to tell yourself that it's just another crisis and it will go away.

I hope you find the answers you are looking for soon.Take care

Elena

p.s.Have you got any other health problems?(like indigestion,constipation,mitral valve prolapse etc)Make sure you do a thorough check up to rule out any other health problem which can cause shortness of breath.

[daisy]

Yes, I feel this often too. Exactly like you described - like I'm not getting a full breath...sometimes my chest feels like I've been running in the cold even when I'm not doing anything at all. I do have GERD and sometimes I think it may be related to that but more often than not, I can find a reason. It isn't even related to a fast heartrate either. Obviously, if my heart is racing, I'll be short of breath but often it happens when it's at a normal level. Yet another symptom that perplexes me......ughgghhg.....hope you can find some relief.

[kayjay]

First symptom i had. I was diagnosed with Asthma but a pulmunary (sorry about the spelling - can't think) specialist sent me to Johns Hopkins b/c he knew it was something else. I know it is horrible. Thinking about it makes it worse b/c i feel like I will suffocate. Treatment of pots has help this problem but I also do not LET MYSELF THINK about it- I have even had dreams about not getting enough air. now I'll have one tonight .

[ericajay]

Thanks, everybody.

To respond to some of the things mentioned-

I don't have any other conditions other than POTS (that I know about). I have been resisting taking fludrocortisine because I hear a lot about it having more side affects than desirable results. But I think it is reaching a point where I need to try something. And I am not convinced that there is not something more than POTS going on even though there are a million POTS related issues. I am due for a new workup- I lately have been having some digestive issues as well.

I don't know what my BP is, but I do keep track of my HR- yesterday when I was feeling really short of breath I sat down for a bit and my HR was 190 even after sitting for 10 minutes. (I teach first grade, so finding 10 minutes to sit is like heaven). My school nurse encouraged me to drink a lot of water quickly to bring my HR down sooner, but it is so hard to drink with that "suffocating" feeling. I also get palpitations when I breath deeply, or try to.

What does everyone know about Mitral Valve Prolapse? I'd never heard of that until the other day.

erica

First symptom i had. I was diagnosed with Asthma but a pulmunary (sorry about the spelling - can't think) specialist sent me to Johns Hopkins b/c he knew it was something else. I know it is horrible. Thinking about it makes it worse b/c i feel like I will suffocate. Treatment of pots has help this problem but I also do not LET MYSELF THINK about it- I have even had dreams about not getting enough air. now I'll have one tonight .

[kayjay]

I know the heart thing you mentioned (MVP) should be ruled out by your cardiologist. If you have had a stress test and an echo I think they would have caught this.

I was teaching kindergarten with undiagnosed POTS. My advice is to get rocker bottom shoes, wear compression and make sure you have your water with salt. Drinking when teaching can be so hard b/c you can't just rush off to the "potty" . I used to drink a lot of emergenc and now I drink it with salt. If you have enough salt your body can hold on to the water better... this really helps the tachy stuff.

I used to be anti meds but I know that the Beta Blocker is protecting my heart. If your heart works to hard for too long it can become enlarged. I might talk to my dr. about taking a low dose beta to slow things down. You may have some side effects at first but your body does adjust.

Good idea to check your Iron level. Mine was too low and made everything worse. Can you get a stool on wheels for your classroom so you don't stand to much? I couldn't bend over students so I spent a lot of time on my knees.

Also STAY OFF THE SWING SETS AND THE MONKEY BARS when you have recess duty- Haha- they really made me sick and now I know why .

[brownsea]

when my symptoms hit a peak, i couldnt eat or drink without being out of breath. the a&e said that unless you were born with your tubes mixed up then i shouldnt be having a problem. that was before p.o.t.s was diagnosed and i felt like i was going out of my mind.

i really wouldnt try to worry about the side effects of meds.

in may i was in hospital i was at my worse, no-one knew what was wrong with me, when the neurologist decided he would be put me on the meds, without having done the autonomic function test because i was so poorly.

before this time i wouldnt of taken any medication. i knew i was going down hill rapidly and had no choice, within the space of two weeks, i was on midodrine ( the first tablet they tried didnt work cant remember the name) fludrocortisone, domperidone, paroxitine and beta blockers. i didnt have any side effects, but also i wasnt worried and i didnt think about having any as i was so poorly.

the fludro also has helped me to sit up for longer periods throughout the day.

hope you feel better soon.

emma.

xxx

[HoudiniCat]

I too get this from time to time and for no apparent reason. You can understand it if you?ve been on your feet for a long time, climbing stairs or generally over-doing it. But when you?re just sitting at a computer and typing or relaxing and watching tv and it happens, its puzzling.

When this happens, I just have to take a few minutes, try to relax and count my breaths till it passes. After years of this, I know its not actually going to suffocate me and kill me (although it sometimes still feels that way). Just another really annoying POTS symptom to deal with.