Still in the Beginning...Now What?

80/57 101 bpm. I'm glad I'm off from work today; I can feel my heart racing, and it's uncomfortable. It's as if I've almost been hit by a car or just been mugged, and I'm coming down from that. Except I'm sitting at my computer, typing. So I'm breaking out the white grape Clear Choice fizzy water and salt-soaked carrots dipped in low calorie ranch dressing. Lucky for me, I love salt, because I have to consume as much as I possibly can each day. There can not be too much salt. Seriously. I layer it on salads, eggs, vegetables, fish, chicken-the other day I made the "salt trifecta"-yams, carrots and potatoes, sliced up french fry sized, sprayed with Pam cooking spray, and rolled to death in salt; then baked in the oven until crispy, then doused with more salt.

When I think, "what will I eat today?", I think, "will salt fit on it?".

Along with water, I always have carrots in my refrigerator, to salt and eat. What surprises me is that, along with medicine to help me retain water (more about that later), and all the salt and water I consume, I am not bloated. I should be bloated. I should look like a Thanksgiving Day parade balloon, but I don't. Maybe that's part of the problem. Low blood volume, low fluid volume retention? I don't know.

My head is clearing a little bit now that I'm sitting and have drunk the fizzy water and eaten salt. There are vertical things I want to do today, so I've got to get it together. I want to bake carrot bread, I want to groom my dog, I want to go to the gym and be able to workout on the Precor and not have to use the recumbent bike. The Precor is a better workout for me; the recumbent is well, redundant.

But before all of that, I'll continue with my story. After leaving Duane Reade with my 85/56 bp reading, I wasn't sure what to do. I really just wanted to go to sleep, and I wasn't thinking too clearly. A few days later, I made an appointment with my general doctor, I'll call him Dr. H.

At the appointment, I told Dr. H. all of my symptoms. He asked me some questions, and then took my blood which he was going to test for everything, including thyroid disease. And then he told me to see my cardiologist. So I did.

A couple days later, I saw my cardiologist, Dr. W. I told him all of my symptoms. He listened to my heart, which sounded fine. I had been to him previously and he had completely checked my heart out so we pretty much knew it was OK. Then he took my blood pressure as I was seated. Then he asked me to stand. I almost passed out. He hurried and took my blood pressure again as he steadied me. He kind of shook his head and smiled. I was like, "what??".

He said, "If your blood work comes back normal, you probably have POTS". Now, I had googled every nasty disease on the Internet, including Shy-Drager (which I'm still keeping my eye on!) but somehow I'd missed POTS, so my ears perked up. I asked him, "What's POTS?". He said, "You missed that one on the Internet, huh?". He's got a sense of humor.

Dr. W told me what POTS was and it seemed to fit. He also told me I had orthostatic intolerance, since when I stood up, my blood pressure dropped so much. He told me what medications treated POTS and OI. He mentioned labetalol, a beta blocker, which would slow down my pulse; he also mentioned midodrine, a vasoconstrictor, and fludrocortisone, which increases plasma volume by helping the body to retain salt and water. I was afraid to take the fludro (aka Florinef) because it could cause headaches, the last thing a migraine sufferer needs.

So we opted for the labetalol 50mg twice a day, and the midodrine, and he told me to drink tons of water and eat tons of salt. I went back to him less than two weeks later for an update, and we figured out that the midodrine, aside from giving my head a case of the creepy crawlies, wasn't getting the job done. So I started on the Florinef, .1 mg a day.

Around that time, I got a notice in the mail from Dr. H. that my blood work was normal.

Things got better after taking the Florinef. I think it gives me headaches once in a while, but that could be the POTS monkeys. There are a barrel full of POTS and OI monkeys that dance in and out of my life each day.

I went along, feeling a bit more in control, less dizzy, less tired, for a month or so. I had an upcoming appointment with my neurologist which had been set before any of this had happened. OI and POTS are neurological syndromes, so I was interested in what he had to say. Quite a lot it turned out...