Remember how in my last post, I talked about trying a new medication (Florinef) with the hopes that it would help me make it through my wedding? And, remember how I said trying something new so close to the wedding might mean I’m really stupid??
God, I hate when I’m right.
Day 1 of Florinef (or, rather, a tiny fraction of a pill): no problems.
Day 2: one of the worst nights of my life.
I woke up at 1:30am feeling kind of jittery. Over the next hour, “kind of jittery” progressed to seizure-like convulsions, severe chest pains, extremely sweaty hands, ice cold swollen feet, shallow breathing and pain all over. I suspected my blood pressure was high because I felt very anxious, so I took it. 133/100 sitting, 180/111 lying down, although I couldn’t lie down for more than a few seconds before the convulsions became too much, so I’m not sure how accurate the lying BP is.
In the six years since I first started having postural orthostatic tachycardia syndrome (POTS) symptoms, this was only the 2nd time I have woken the BF because something was wrong. I was terrified. And, of course, he held my sweaty hand the entire night, reminding me once again why I want to marry him.
I wasn’t able to sleep that night, and wasn’t even able to lie down, so I just sat up and stared at the wall. In retrospect, we absolutely should have gone to the emergency room, but I was unable to think any coherent thoughts. All I could do was wish it to go away.
Twelve hours later I felt better, but definitely not normal. In fact, it has been a few days and I’m still dealing with increased chest pain and high blood pressure. I still feel….off. It has been a rough week so far. I hope to wake up one morning soon and feel “normal” (or, POTS normal), but at the same time, I’m so grateful for every morning I do wake up.
I’m sure this goes without saying, but I will never try that medication again.
As I mentioned in a previous post, Florinef is designed to help raise blood volume, as those with POTS tend to have 20% lower blood volume (according to my doctor) than the average person. Getting a saline IV serves the same purpose. After such a bad reaction to the Florinef, I am wondering if I have normal to high blood volume and am nervous about getting an IV before the wedding. I’ve received IVs in the past, but only after fainting or when I had a migraine – I have never received an IV as a maintenance/precautionary measure.
As a word of precaution, talk to your doctor about blood volume before taking Florinef, and start on a very small dose.
To be honest, I was counting on the Florinef and IV fluids to help me get through the wedding. Clearly the Florinef isn’t going to happen, and now I think an IV is just too much of a gamble. If I react to the IV like I did to the Florinef, I wouldn’t make it to the wedding. I don’t think it’s worth the risk.
Which means I’m going to have to make it through the wedding without any extra help. My confidence level just dropped.
Thank god the BF will be there, standing next to me, holding my sweaty hand.
“And it is still true, no matter how old you are-when you go out into the world, it is best to hold hands and stick together.” ― Robert Fulghum, All I Really Need to Know I Learned in Kindergarten
Smell ya later.