The Grinch Syndrome

Let me begin by stating categorically that I like Christmas. I have no plans to steal anyone's presents. I love the Whos of Whoville. It's just that my heart may be two sizes too small. 

You see, there is this doctor in Texas, Dr. Benjamin Levine, to be exact, who is a cardiologist researching for NASA. He was looking for ways to help astronauts cope with long periods of time away from gravity, and how to keep them strong during long times in space, and how to help them function when they return to our home planet. Then he noticed that people like me– people with POTS, people who don't DO gravity all that well– have a lot in common with these astronauts. So he started doing some serious research on POTS and how to treat it, bless him! What he came up with is an exercise protocol, three months long, mostly seated (recumbent bike, rowing, etc) so gravity is less of an issue. He tested these POTS subjects 9 ways to Sunday, and discovered that they all had something in common: small hearts. Each beat of the smaller heart moves less blood, the heart has to beat harder and faster to accomplish normal things. Also that the blood volume is low in these subjects, so now you have a small heart trying to move way less blood. Clearly the result is not enough oxygen getting to the brain, which leads to brain fog and tiredness, dizziness and near-syncope (almost fainting, which I like to call a sudden totally voluntary decision to lie down on the nearest flat surface.)

Best of all he learned that these small hearts could actually grow through intense exercise and that blood volume could be increased through exercise and truly crazy quantities of salt and water (8 grams, 4 liters, a day!!)

So he published this big study this summer, which I found out about through the wonders of the blogosphere, and ultimately forked over $15.00 to read for myself. (No, the public library did not have it…) The best part of the thing was at the end he said that almost half of the test subjects– ready– are YOU sitting down?– NO LONGER HAD POTS. Yes, you could tilt-table them even, and they would not pass out. Their POTS was GONE. Their hearts were normal sized again. Their blood volume, normal. Their quality of life– normal!!

That got me pretty excited, and I wrote him an e-mail saying hey, can I get a piece of this action? (Raising my hand ever higher and going, "me! me! take me!") And his asst. wrote me back and said that indeed they are running an even bigger study now, trying to set up a worldwide POTS database, and that I could be in the study too if I wanted. This would entail getting my doctor on board to be the liaison, and some other small technicalities. Then they would give me the exercise protocol, which I would commit to doing to the letter for three months, and then we'd see how it worked.

Yesterday (I just got the reply on Thursday night) I called my neuro to talk about it, and was only able to leave a message, and so this is still pending. I would think that he would be all for it, as he is one of the "exercise helps" camp and would love to have some proof to back up this instinct. The anti-exercise forces are still quite powerful in the world of POTS research, I think, and so they need data to support the new view.

[Regular-person article can be found here:  http://www.nsbri.org/newsflash/indivArticle.asp?id=383&articleID=57; abstract of medical-person article can be found here: http://content.onlinejacc.org/cgi/content/short/55/25/2858; one lady who actually tried it here: http://www.potsrecovery.com/]

Just last week I had a talk with Vince about my progress and he said that I should try… try… to go to the Wellness Center and work out once or twice a week, even for 20-25 minutes, just to see what happens. Now you may recall that in May, when I started back in vestibular therapy, I attempted to ride the recumbent bike for 4 minutes with two people standing there with clipboards watching me. Yesterday, I rode it for 40 minutes! The lowest setting, but still…

So I'm hoping to get this all sorted out and get the exercise plan in hand sometime soon, and launch this newest and most exciting phase of my recovery from this stupid illness.

I read in the New Yorker that ultra-cool guy John Lurie was diagnosed with POTS and dismissed it out of hand, because the name was too lame. Well, I'm not sure he'd like "The Grinch Syndrome" any better, but since all the subjects have small hearts, that's what those silly NASA-NIH researchers are proposing we call it! I propose that we call it "Astronaut Sickness" as being way cooler than either. I simply have a body that feels that it's been living on the international space station for the past year. 

Also I learned that "Yellow WIggle" Greg was felled by POTS himself, and had to pass the yellow shirt off to new Wiggle Sam for this very reason. In a later photos for their band (children's music sensation The Wiggles) he is often seen giving the thumbs up while reclining on couches. Dude can't stand up without fainting. … 

Now, on the flip side, also in the blogosphere are several nay-sayers about the study. They say the sample was way too small to mean anything, and that one of the conclusions (that POTS is caused by deconditioning) is totally offensive and wrong, and then they list their fitness stats. "I was running six miles a day when this hit," that type of thing. Also over the last few incredibly hectic weeks, I talked to a cousin of ours who is surely the most fit person I've ever met in real life. He is a rower in the extreme sense and is in perfect shape, a strict vegetarian and uncanny athlete– who thinks he has POTS. So, that aspect of it rings false. And it does worry me that rowing is effectively promised as the cure for something that this guy who rows like crazy has also. My hope is that he doesn't actually have it- he hasn't been tilted and has only been diagnosed by an ordinary doctor, so it's not totally sure.  

The other thing is the medication factor. They make people quit all heart-rate altering meds before starting the study. So… my question, and this is still unknown, is whether Cymbalta is "heart-rate altering" or not. If I have to stop it, and my neuro gives that idea the green light, I would surely try it. Scary– I have many fears about that idea. the Cymbalta has been a huge benefit to me, and when I think of the darkness and despair I was in in January, and how I had to lie down several times in the course of making dinner, I can't believe how much it's helped. But long-term– looking ahead some months or a year, I would surely rather be way more fit and be off the drug, and this study seems like a ticket to both goals.

So… we'll see. The next step is getting the doctor to agree to help. I bet he will, but until I know for sure I can only wait and see. Next week I'll find out and we'll take it from there. Maybe I'll be in better shape in time for Christmas– strong enough to carve the roast beast?