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!

I actually started many months ago on the Florinef, at the lowest dose of 0.1 mg per day. I felt absolutely no difference, and it was about that time we got off on the wrong path and thought I might have an adrenal problem. I was taken off the Florinef while I was being tested for adrenal problems, so it wouldn't interfere with the tests. It is a steroid, after all.

Off the Florinef, I was placed on the Midodrine and it didn't take me long to find the downside. Midodrine caused me to have tingling all over. I had cold chills, especially on my scalp, and sometimes it actually felt like bees were stinging the top of my head. To make matters worse, it seemed to have no effect on my blood pressure. Not only was my upright blood pressure still low, but even my lying blood pressure was at the bottom end. Yeah, a side effect of Midodrine is supposed to be hypertension when laying down. Not so much for me. A lot of tingling, and nothing else.

Now, with the adrenal problems ruled out and POTS diagnosed I've been taken off the Midodrine and placed back on the Florinef. This time, I'm titrating up above the low dose I was on last time. At 0.1 mg I was not really noticing a difference, but at 0.2 mg I feel wired and hungry. It is a steroid, after all. In a week I'm supposed to go up to 0.3 mg and that sounds not fun.

I'm treating the medicine as a temporary crutch. I want to use the meds and the compression hose as supports to keep me upright until the exercise and diet can take over, but man is this part sucky. I didn't think the medicine would be as much of a trouble as it is. I way underestimated the side effects. I think that happens a lot - we hope for the medicines to save the day. We don't expect the side effects to happen to us. I mean, if we did expect side effects who would take any of the medicines that are advertised? I know I look at a list of side effects and go "Oh wow, bloody diarrhea? That must suck for that poor sap!"

The other day I met with my local doc, who was gung-ho to up my Florinef in order to speed up my gains in activity and exercise. I was hesitant, but couldn't really say why. Well, this is why. The meds have their own downside, and I think I'd rather slow roll than rush forward and feel like this. Still, I'm going to give this a chance. Unhappily, but I'll do it. I'll let you know if it starts to get better as I go on...