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breathing trouble


ariella
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hi

I'm having a lot of trouble breathing, and we're trying to figure out if it's being caused by POTS or another illness that I'm being evaluated for. How short of breath is normal in POTS? I'm having trouble breathing even when not feeling otherwise POTSY. It's sometimes severe enough that I cannot eat, or I feel "drunk" from lack of oxygen.

thanks

Ariella

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I am one of the very few here who has shortness of breath all the time. I have had numerous tests (although I have not had a cardiopulmonary exercise test) and the results are pretty normal. The shortness of breath was my first POTS symptom and has endured for 18 months now, with no signs of it getting better, or worse.

The tests I have had that helped rule out more serious causes include a pulmonary function test, a CT scan of your chest or a V/Q scan (to make sure I had no blood clots in my lungs), and I also tried an albuterol inhaler and Advair inhaler. I have not tried oxygen yet, but some here say it helps them.

So to sum up, I don't know if my breathing difficulties are "just POTS" or not. But so far they are not appearing to be anything serious, even though it feels like it.

Amy

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There are different kinds of shortness of breath. I experience air hunger and have sighing hyperventilation when i go to sleep or lie down. It makes you feel like you can't get quite enough air into your lungs and you have to keep taking these big breaths till you feel like you got enough, and then 2 minutes later it starts over. I occasionally have this during the day if under tremendous stress, but 99.9% of the time I wake up with it. It can be bad enough to make me light headed and my ribs hurt from it. It's miserable.

The other one is severe shortness of breath when I try to exercise. It's totally different. That's the kind that makes me want to stick 02 in my nose, and I'm not a big fan of that. It's more the gasping too fast kind.

Can you describe your symptoms, or be more specific. Is it all the time, only when you lie down, or exercise. Do you have a cough with it, or are you swelling anywhere?

If this is something new, it's certainly worth talking to your doctor about (I know we all love that) but if it's affecting you this much, he should be aware of it. Sorry I can't help more. morgan

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Morgan,

Had this for 11 years when POTS symptoms started. Was misdiagnosed at the time. Just got POTS dx a few months ago!!!

Shortness of breath is getting much worse, feels like my body just is too fatigued to breathe. At best have to strain for a full breath, at worst even straining doesn't help. It's fairly constant now, with occasional better moments and many worse moments. Usually worse at night, but otherwise unpredictable. No cough. It's not asthma. Find it hard to talk. (God's way of telling me that I talk too much!LOL)

Ariella.

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Ariella, you should ask for a CPET, a cardiopulmonary exercise treadmill. It is monitored by a doctor and it shows whether there is a heart lung, heart, lung, or exercise intolerance factor to the shortness of breath. It shows many many things and I think it is a very good test. I only lasted about 3 minutes, because I couldn't breathe, but they were able to tell a lot of things. I don't hyperventilate, so it's not anxiety, I get tachy way too fast, I am very deconditioned but it would be impossible for me to get conditioned because of my shortness of breath and tachy. So it was actually a very positive test that showed I really had stuff wrong with me. One of the few. It also showed that my heart and lungs work together okay, so it's the OI thing. It was a very helpful test for me. They put me on 02 for a little while after, because that is about the closest I ever came to fainting. Being short of breath is the worst thing I feel with this disease. Not my heart going a zillion miles an hour or my bp going sky high, but feeling like you can't breath is the worst. I hope they will do some more tests on you and get to the bottom of it. morgan

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Morgan, what is the cardiopulmonary exercise test like? Do you have to have an IV? An arterial line? Anything painful?

Amy

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morgan,

forget the treadmill idea, I can't walk too much either, muscle weakness with repetitve motion, I walk real slow and it gets worse as I go. That's why we're doing a workup for something other than POTS. But I'm laughing at the idea, imagining something under my feet making me walk fast! (I really am laughing, it's how I cope) Thanks for thinking of me! :)

Ariella

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Amy, My test was not invasive at all. Sometimes they do blood gases, but only for people with significant lung disease. All I had were electrodes and you breathe through a machine as opposed to just standing there, and that is only part of the time. It is not invasive at all. No iv's or heparin locks or meds.

Ariella, they also use a bike for people wjo can't do the stand up one. I would have to use a bike this time if I did it again. So there are other options for doing it, that aren't as hard as the treadmill. Trust me, it was almost impossible for me, my heart was 120 before we even started and 200 in 1 1/2 minutes. But I can do a recumbent bike okay. They use both. So don't totally rule it out. I get very short of breath on my bike too, but since the ablation, my heart rate doesn't go up at all, so I'm gasping like a dying fish out of water with a heart rate of 102. I had my cpet before my ablation. morgan

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Shortness of breath has always been one of my worst and most persistant symptoms. Early on, I felt like my breathing was partially paralyzed, and spirometry reflected that. I feels now (months later), like I am breathing through a straw most of the time, and that something is restricting my lungs to keep me from getting a full breath.

Pulmonary/exercise tests show some abnormalities, but it's not "too bad". What is interesting, is that if I get VERY COLD and stay cold (like my nails are blue), I can breath so much better!!!! So, I do believe it is something vascular, they just don't know what. It is very reassuring, though, to have it better, even if it is an isolated time. It shows me that everything has the potential to work.

BTW, I have much more trouble breathing while lying on my left side, next worst is my right side, easiest is my back. You may want to check out if any position helps you.

It seems paradoxical, but after I exercise (recumbant bike), I feel a little more on top of the breathing, too. So, even on kinda yuck days, I at least TRY to exercise a little. Hang in there. You are not alone in this. My doc at Mayo said that he's had a couple of patients who needed to be taught how to breath again!

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I also feel at times like I can't breathe, that my chest is heavy/tight. All tests always show o.k., except at times maybe they say, a touch of asthma(allergies). I also notice that exercising can help me, that sometimes, not all of the time thought, that after exercising I breathe better.

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Ariella,

I would also suggest that you request your doc to test your respiratory muscle strength.This is easily done along with Pulmonary Function tests...called MIP MEPs (max inspiratory pressure.max expiratory pressure).This would rule out any neuromuscular problems that could be causing your breathing problem.

Hope this helps.

Margaret

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For me my "shortness of breath" is only when I'm either tachycardic or bradycardic...in other words when my heart rate is going wacky. I'm glad to hear that you're exploring if there could be something else going on as it's so easy to attribute anything & everything to OI. Hang in there & let us know how things turn out.

:-)melissa

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