POTS Exercise - General Thoughts

I'm not the first person to tackle this subject. That much I know is true.

It seems to be generally accepted that exercise is an effective way of controlling the symptoms of POTS. In my experience, the guidance coming from the medical professionals is fairly slim. I was told "work out daily, build gradually, start off recumbent" and that was about it.

I know there is a certain doctor who has a very detailed POTS exercise protocol. I have heard that some people have good results using it. But after that, the details are sketchy as all get out. I understand that the original exercise study was conducted in 2011, and I believe a second study is still in process. Details of the current program are not being released during the study, and past participants signed confidentiality agreements. So the only way to get his exercise plan is to sign up for the study. Soooo... it's great that someone is working on this, but not much help to me right now.

POTS patients need clear guidance, a plan, something simple and attainable. Something safe and, dare I even breathe it, maybe even free. I've seen a few people who have shared general guidelines they were given, but they all seem to start a bit further out (in terms of exertion) than the more extreme cases would be able to handle. No, I'm not a professional. However, I have access to a few. I cannot claim a study or any sort of research, but I can share what has been working for me. There's nothing stopping me from doing that much.

So I'm going to be delving into my own exercise regimen. I'm going to share the opinions of the doctors who are treating me, what they think of my approach. I'm also going to bring in thoughts from a personal trainer who is a good friend of mine, just to get a sports medicine sort of look at things. And, most importantly, I'm going to tell you what has definitely been working for me. Because I can honestly say that exercise has turned the tide for me, inactivity has heralded my worst episodes, and from where I started (early September was my darkest hour) to where I am today is a total 180.

Turkey Day Wrap-up

I hope everyone had a fantastic Thanksgiving! I spent all day cooking (which I LUV to do) and a friend joined us at our table to give thanks for something so precious... health.

I find it hard to believe that I was able to participate in yesterday's festivities, because just two months ago I was bedridden. In September, I was hospitalized for four days, trying to figure out what was going on with me after going into the ER nearly catatonic. I'm truly grateful.

I've been trying to think of a way to share with you my exercise approach. It's what I desperately want to do, because I think it's the secret to my turnaround, but I'm stumbling on getting it out right. I promise to make that the focus of my next post.

POTS Swag: Water Bottles!

Drinking 4 Liters of water every day can become a logistical challenge for someone who's on the go a lot. And, let's be honest, the goal of treating POTS is to be on the go again, right? I've tried a few options for carrying enough water around, and I think I finally found something I like.

Flodrocort-o-Blues

In an effort to raise blood pressure, I've tried two medications so far. Midodrine was awful, but I'm starting to think Florinef is not much better. Aaaaaand.... rant!

Eating POTS

My POTS "diet" is a weird creature. I've had to change some basic things, and totally toss out some well-loved assumptions.  It's not anything established or proven over time, but I'm sharing it so you can learn from my experiences as I go.

An Overview of POTS Management

If you've been diagnosed with POTS, chances are you haven't gotten terribly clear guidance on what to do about it. That's because there isn't one clear way to handle it. Each person's individual treatment will be very different, based on factors like physical condition, severity of the syndrome, other ailments, lifestyle, etc. There are, however, some general areas of treatment that apply to everyone. Here's my summary of the broad categories.

Diagnosis: POTS, Continued

Perhaps you are wondering how a person even gets diagnosed with POTS. Here's part two of my story. For the first part of the story, take a look here. I'm just going to pick up the whole, sordid tale from where I left off.

Diagnosis: POTS

Like most POTSies, my story from health to illness to diagnosis is long and convoluted. My ongoing story of diagnosis to wellness is sure to be even longer, basically lasting the rest of my life. Here's the "Reader's Digest" version of how I became ill and figured out what was wrong, part one.

Diagnosis: Celiac

As a lifetime carb addict, I was never interested in the Gluten Free "thing." As friends embraced it for reasons I didn't fully understand, I began to question their sanity. What were they thinking? Life without bread bowls of soup? Endless breadsticks at Olive Garden? Heaping piles of pasta? Why would they want to live like that?