Discussions that mention florinef

Rare Disorders board


Hello to all! I am new to the board. I was actually looking for some information on another medical problem that I am having and came across this. I was so glad to see it! I was diagnosed with NCS over 10 years ago but I have had it pretty much my whole life. My poor parents carried me to every dr imaginable trying to figure out what was wrong and of course no one knew. Finally when I was 21, 6 months after I got married, I got reffered to an electrophysiologist cardiologist. I was having several episodes a day by this point. I was actually bed fast. I had been a very, very active person up until then. They had scheduled a tilt test for me and some other tests. I was asystolic in 2 minutes. I still hold the record in his practice for the fastest tilt test...hahaha. I tried a drug called Norapace for 2 weeks which didn't work so I came back and nearly passed out on the tilt again. So, they put in my pacemaker in the test room immediately. Basically the pacer is my insurance policy that my heart will not stop if I have a severe episode. That is it. Then the work began of finding the right cocktail of drugs. For me it was, Florinef, Toprol Xl (100 Mg), Proamatine (2 pills every 3 hours from 6 am till 9 pm), salt tabs, and potassium tabs. It took nearly a year and a half to get that right. I was very sick and basically in bed becuase I was so dizzy during that time. And I went from 110 pounds to nearly 200. My metabolism basically stopped. BUT.....this is the good news.....over time I have gotten better. Yep...strange huh? My dr said it was possible. I still have episodes now and then but they are very few. Like one every 6 months or so. I did get my pacer replaced when the battery life was going out ( I am not dependent on it-it helps me only when necessary so I could have it removed later). My dr did that just in case I wanted to have more children. You tend to be prone to episodes in the beginning of pregnancy although later in pregnancy is great b/c of all of the fluid. Anyway, I only take Toprol XL now and I am doing great. I do drink LOTS of fluids-especially water or something with sodium. Even more in the summer.
Sorry this is so long, I just wanted to tell you all of this to say that it can be really bad, but it can be better too. Maybe I can help if you have a question as my dr has always been very open with me about everything. Good luck to everyone!
Jenn :)
Hi all-

Was looking for something else and stubbled across this thread. I also was diagnosed several years ago by a wonderful electro-cardiologist who happens to be a specialist in this (thank you to my old PCP for picking up on this problem and getting me to the right guy). I flunked (or is that passed?) the tilt table test. Am currently on Toprol 2x day, Florinef 2x day and Midodrine 3x day with fairly good results. I now only have probems when I overexert myself, forget to eat/drink enough or forget to take my meds. I have turned down the pacemaker for now as I feel I can handle the episodes I do have but it is an option for me. I am less concerned with the dizzyness; more annoyed at falling out since people tend to panic who don't know about me.

Do any of you have the need to rest more than regular folks and how do you handle the heat? I cannot tolerate the heat or even a hot shower without going down. My cardio taught me an emergency movement that has helped me out several times when I feel an episode coming on: Cross your legs and squeeze like heck - it sends your blood to your brain and can stave off an episode long enough to let you sit/lie down; sometimes it even solves the problem. Heck, I use it all the times while giving lectures where I am standing for hours. I look like I really have to "go" but fortunately I am usually behind a podium so nobody notices;). I sometimes wear ted hose if I am traveling or standing for long periods.

It is nice to get to know others with the same problem - I thought I was an odd duck since I have never met anybody who has even heard of it (including some doctors!)
jane