Discussions that mention florinef

Rare Disorders board

I dealt with neurocardiogenic syndrome for at least 20 years before I was properly diagnosed. Starting at around age 10, I would pass out about once per year. The first time it ever happened was in the doctor's office after getting a shot (they assumed I was allergic to penicillian so I never received it again...oops). I also passed out in church, in school, at work, at home, etc. I always thought that it my "passing out" was caused by poor diet, lack of sleep, fright, drinking, anxiety, etc. On several occasions I passed out at the sight of blood.

The breaking point came in 2002. I was home sleeping. In the middle of the night, I woke up and for no apparent reason I passed out. I awoke and passed out two more times within minutes. I ended up in the E.R. via ambulance whereupon I passed out again! A cardiologist and nurse practitioner clued me in to what I had. The cardiologist wanted to install a pacemaker but I refused. I didn't want to be a 28 year old man with a pacemaker. I chose the alternate route. This consisted of a high salt diet, reduction in caffeine (I used to drink 12 cans of Coke per day) and drinking more water or Gatorade. I also began to take .1 mg of Florinef per day (I refused to take Effexor...an anti-anxiety med with helpful side effects to keep the blood pressure up) as well as an OTC potassium supplement. I failed several tilt tests before finally passing one after being on the Florinef (fludrocortisone) for about a month.

Things had been fine for about 3 years at which point I decided that I didn't need the meds anymore and I stopped taking them. DUMB!!! I ended up going down about a year ago and I could feel the symptoms occuring more frequently. I got back on the meds this May. I'm having fatigue issues now but at least I feel that I wont go down as easily if I were not on the meds.

STAY ON YOUR MEDS! Keep up the salty diet and try working out. I also drink no carb/no sugar pop (ie. coke zero/vault). Rather than drinking 12 cans, I drink 4 and have several bottles of water to stay hydrated. I have never had a problem after engaging in physical activity. My problems occurred when I was just standing around. I think that a pacemaker may eventually come. I'm hoping to go another 10 years without one. Don't be embarrased if you have to sit down in class. It's much more embarassing to pass out and end up waking up with 20 people hovering over you. Also if you are driving and you can't find a safe place to pull over, turn on the air conditioning (high) and open the windows at the same time. Try thinking of something else as well. I've found that when the symptoms arrive, the more that you worry about it the worse it gets. Try thinking about something else and calmy sit down or get something to hydrate yourself with. Try eating regular meals including breakfast (advice I need to follow myself).

I don't know if you will "grow out of it." I never did. But don't be ashamed. My physician put it best: it's a defect that can be managed and its not your fault. Take your meds and eat healthy. Good luck.