Why Is It That....

[pink1975]

Some days I can dance the Macarena and some days I can't even walk across the parking lot?

I absolutely hate the randomness of my POTS symptoms. Last weekend I taught a bunch of my daughter's friends the Macarena and danced the whole song with them and this week I can barely walk across the parking lot. I do have asthma as well, but my lung function has been in the normal range and it doesn't help to take my rescue inhaler so I imagine the shortness of breath is from POTS. The weird thing is that my beta blocker is doing a fantastic job and during these episodes, my heart rate stays around 96 (resting has been about 64 lately which is the lowest I have ever had).

Can you have shortness of breath without tachycardia? Can low blood volume cause the feeling that you are short of breath? (My cheeks and fingers are always quite pinkish during these episodes so I imagine that I am getting plenty of oxygen). I have been having other POTS symptoms (I seem to be going into a flare). Last week I almost fainted after walking up three steps into my building and last night I had presyncope after I got home from work and had to guzzle two glasses of water and eat two salted (lol) pickles in order to stand long enough to cook dinner. Any thoughts?

[castronovo112587]

You have described me exactly as well. The only thing I could think is you may be over doing it on your good days and you pay for it for a few days after. Now its my understanding that beta blockers are not the best for asthmatics, especially ones that are b1 and b2 blockers as it can exasperate asthma symptoms so that can be part of your problem. Dysautonomia is just so random and unpredictable its frustrating!

[Chaos]

If you figure it out, I certainly hope you will let me know because I've been trying to find a pattern or precipitating factor for years.

Actually, when I first became ill, my symptoms seemed to be more random and less related to activity. Now I can definitely tie over-exertion to my PEM symptoms the next day. One of those PEM symptoms is the shortness of breath/air hunger. While I have been diagnosed with exercise induced asthma, my pulmonary function tests are always good....until I exercise. Then they don't look as good.

I have SOB without tachy frequently. I was getting saline IV's regularly over the summer and while they helped tremendously, the days that I was SOB, I was still SOB when I was leaving the facility after getting the saline so not sure that the blood volume accounts for it. I still think there is something metabolic that gets switched "off" and there is some imbalance of O2/CO2 that occurs in the brain that accounts for the symptoms. For me anyway, it doesn't feel like the problem is really a lung issue. Feels like it's more a central nervous system issue or perhaps a mitochondrial issue.

From the 2 day CPET I did, I know I get plenty of O2 into my blood, but it's not getting utilized by the muscles so I'm just exhaling it all back out again. Theories I've heard to explain this include one that says for some reason we have lost the ability to uncouple the O2 from the hemaglobin and allow it to enter into the cell. Thus, even though your O2 sats are fine, the levels getting into the cells aren't.

Regardless of "why" it occurs , I certainly share your frustration!