Discussions that mention proamatine

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 :)