Friday, October 10, 2008

A day in the life of a POTSie...

Over the past few months, I've spent the majority of time on this blog writing about chronic illness in general... But today, I thought I should go back to talking about my specifics, i.e. POTS (postural tachycardia syndrome). For those of you who have not been with us from the beginning, I have POTS, which is a dysfunction of my autonomic nervous system. Basically, my autonomic nervous system does not respond appropriately to most tasks asked of it; for example, when I stand, my heart rate skyrockets and will keep rising the longer I am upright. I am on multiple medications that are designed to help with this problem, like a beta blocker to reduce my heart rate, and midodrine, which raises my blood pressure in general so that theoretically my heart rate will not need to rise as much to compensate for my standing. There are a lot of other problems associated with dysautonomia, such as being unable to regulate my body temperature (if I have a cold drink, I am freezing and have to put on a blanket even if it's 80 degrees in the house), difficulty digesting many foods, blurred vision due to increased pupil size (among other issues), fatigue, fainting, etc. Not a fun disorder to have to say the least!

One of the most difficult problems, of course, is the lack of control I have over my heart rate. I thought a lot of you would find it interesting to see exactly what kind of heart rate changes I am talking about. Below I have a graph that shows my heart rate while wearing a continuous heart rate monitor during the day (I chose an hour to show the changes in bpm enlarged). A normal person's heart rate would barely fluctuate at all and would stay relatively consistent. The low points are when I am lying down, trying to recover from standing, and the high points (upwards of 120 bpm) are when I am standing or walking in the house. This graph is only while I am in the house on a normal extraordinary activities here at all (unless you consider doing a load of laundry extraordinary). You can see that the instant I stand, my HR skyrockets and stays up until I sit or lie down. When my heart rate gets very high, I get extremely dizzy, disoriented, and feel faint. If I stayed standing long enough (more than a few minutes), I most likely would faint, as I have in the past.

Keep in mind, this graph is while I was on a beta-blocker (obviously it wasn't working as well as it should have been), so it would be even worse on no meds. Needless to say, not the easiest problem to have and the polar opposite to being able to function normally...

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Sweet boy

Chloe Bear

Chloe Bear
Chloe as a baby!