I went to my Dr House-type doctor yesterday, the one I am seeing about my CFS. I was there to get the results of my blood tests (mostly normal) when she asked me some random questions: have I ever fainted? can I stand up for a long time? do I have ‘stretchy’ skin? am I double-jointed?
Well, apparently my answers to these questions indicate that I probably have POTS syndrome (or, more correctly just POTS since it stands for postural orthostatic tachycardia syndrome). This is a pretty obscure syndrome, and it is truly down to the House-like powers of my doctor to figure out what’s going on with me. Since it is so uncommon, I wanted to go ahead and put this out there.
I am one of those people that gets woozy when they stand up, but fortunately I haven’t fainted (yet). If I have to stand up on the tube more than 15 minutes or so, the blood pools in my legs and I start feeling faint and nauseous and my feet feel like they are on fire — I tense up my leg muscles over and over to try and keep the blood moving but it isn’t pleasant. My wrists and hands are very flexible and my skin is indeed apparently stretchy (news to me).
The main indicator of someone with POTS is that their heart rate rises significantly when they stand up from lying down, and we generally have low blood pressure that drops even further when we stand up. Pretty much everyone knows how it feels to ‘stand up too fast’, but not everyone’s heart rate freaks out. Mine does. She tested me and everything. Interesting.
The deal is that POTS is more than low blood pressure and wooziness standing up, it is a dysautonomia. This means that my nervous system is wired a bit wrong and in simple terms means it takes about twice as much energy for me to get around in life as it does compared to most people. Every day is a Ginger Rogers day for me: backwards and in heels. It is the most likely explanation for my chronic fatigue and also for my random sinus freakouts, and even informs the very roots of my personality as a type A anxious-type driven person. That’s me in a nutshell: overclocked but underpowered.
In some people’s cases, POTS is triggered by stress or illness. In my case it is most likely genetic, related to a bunch of things I won’t bore you with. On the upside, my mysterious malaise has a name. On the downside, it really probably is permanent. I have been told to eat lots of salt, though, so there is that. And now I know why I generally love to stay in bed: I feel better lying down.
Anyway, it is one of those bizarre things where the more I read about it the more things click into place: why I can’t handle standing up, why I am so tired, why I once woke up from general anesthetic, why mornings are awful, why I feel ill on planes about four hours in when I can’t lie down, why I feel ill in hot weather (even though I love the heat…as long as I am lying down!), etc. It is all pretty uncanny. I do wish I could make it stop, but at least I can now better identify things that will make me feel awful so I can better prepare for and cope with them.
The Mayo Clinic has done a lot of research around POTS, and here are some interesting links from them:
* POTS podcast and other helpful info
* beta blockers as a possible treatment
* a paper summarising Mayo POTS findings