Hi ya'll! I was (FINALLY) diagnosed with neurocardiogenic syncope about three years ago. It took two and half years of doctors, neurologists, psycologists and cardiologists to actually come to a diagnosis - then when they did have a "name," it seemed that I still wasn't having the proper symptoms - instead of a 20 minute recovery time after a spell, mine might take up to 36 hours. Therefore, the psychiatrists - because, of course, it was all in my head!

Finally, I came across a cardiologist who actually seemed to understand the problem. He is wonderful and he set me up with a pretty good arsenal of meds, which helped reduce my spells but did not completely stop them - I went from spells everyday to spells about 3-4 times a week. And he still couldn't tell me WHY my symptoms were so different. So he referred me to Blair Grubb in Toledo, Ohio.

What a wonderful man! He spent hours with my family and I, explaining the very basics of neurocardiogenic syncope. My long recovery times were NOT psycosymatic, they were byproducts of the types of spells I was having. It seems that when most people have a "spell," it happens very suddenly and they pass out immediately. The brain only experiences loss of oxygen for a very short time and therefore the recovery period is relatively short. I can feel a "spell" coming on for an hour or more and I almost never completely pass out. I experience a number of symptoms as parts of my brain shut down b/c of loss of oxygen - I'm get confused, I'm extremely fatigued, my voice goes down to a whisper no matter how loud I try to talk and I find it very hard to communicate. Once I talked to Dr. Grubb, it all made sense.

Because my regular cardiologist is doing such a good job, Dr. Grubb really didn't have much more to add in the way of treatment. He fiddled with the meds a little but not much at all. However, the explanations and support he gave me and my family were well worth the trip from Florida to Ohio. I've seen him twice now, and plan on making it a yearly trip. I'm not crazy afterall!

The one thing Dr. Blair stressed was having a good support system. My family and friends are great. They recognize a spell coming on usually quicker than I do and lead me to a chair and put my feet up. After all this time though, I try not to talk about the stresses of having syncope at this level. Listening to someone's health problems can get pretty boring after a while if you're not experiencing the same thing.

SOOO - we finally get to the point of this post! I'm looking for contacts who can listen (and give suggestions) or who need someone to listen )and give suggestions), to the everyday facts of life when living with a chronic problem like syncope.

I'm talking about the fatigue, the sweats, having to quit work, trying to manuver the Social Security system, the embarassment of fainting in the supermarket (I fainted in two different Publix Supermarkets, across town from each other, on the same day!); the problems families face because there's only one parent allowed to drive and one kid has karate practice at 6:30 and the other has a softball game at 6:45 - across town;

Although they never say anything, I know my kids get embarassed when they're with me in a public place and I have a spell. My husband has been absolutely wonderful, but I feel like a kid again when I have to ask if he can take me somewhere. And then I feel like I have to hurry through the errand b/c he's waiting.

I could spend another three paragraphs complaining - and I'm sorry if I sound petty, b/c I have so much to be grateful for - so I'll stop here. I guess I just want to hear from people who have gone through the same things and gotten through them alright. God's Blessings on you all.