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I am a 29 year old woman who suffers from vaso vagal syncope.
One thing about having this condition that bothers me is people and some doctors perceive me as weak and as having an anxiety disorder. As I mentioned in another thread, my incidents may not be frequent but they are severe. The first one occurred when I was a toddler and I hurt myself. My parents thought I was dead but sure enough I woke up. As I grew up I would have seizures, fainting spells, or cardiac arrest when I experienced any kind of piercing pain (specifically with needles, bloodtests, IV’s, and cuts, broken bones.) And there was no “talking myself out of it” or “calming down”. It happens so fast and once I feel it coming on, I can’t shut it off ( 5-15 seconds) then I go down. Sometimes I have just enough time to lie on the floor so I avoid concussions. In my case 90% of my incidents were a direct result of those stimuli I mentioned earlier. It is not as if at age two I was phobic. I’m not sure why I am like this but I know it is a physical reaction and not emotional. And my siblings do not have this problem. It was easier for people to put me in the category as just some girl/woman who needs a fainting couch from seeing some blood or feeling a little pain. And that is just ignorance.
I think throughout my life, I’m doing the best I can for what God gave me. As a child I even played sports every season and had quite an active social life. It really would have been easier and maybe safer for my mom to shelter me from everything and to hide out but what kind of life would that have been. Yes I did experience several concussions and horrible trips to the emergency room. And was even humiliated in school on more than one occasion. But I never gave up on pursuing what happiness and my dreams and continue to keep going day by day.
As a Pre-teen my neurologist decided to induce me with a blood test while monitoring my heart and brain activity. He did see that I flatlined for 1 minute and it was all recorded. My family and doctors had the concrete evidence of what was occurring but after that day I was never the same. My advice is never let someone do that do you and parents never have that done to your children. I thought I had died and so did they. Maybe I did. It was so frightening and so traumatic I don’t think I’ll ever forget it. After that day instead of trying to induce the incidents or even desensitize me, My family, my neurologist, and my doctors all took a different approach to my healthcare. They finally understood what I was trying to tell them all along. As a result, we then avoided all the unnecessary stimuli and my incidents lessened dramatically. For instance during high school and college I was excused from vaccinations. I know it’s hard but you really must be your own advocate.
My advice to parents of children suffering from this is first to educate yourself as much as possible. Growing up my parents had no idea at first what was happening. Try to inform caretakers and doctors of your kidsand even have copies of there medical history on hand. (even have them wear a medical bradelet) Several times I was rushed to the emergency room in the presence of acquaintances who were not familiar with my condition. I was treated intravenously for being epileptic which was the worst possible thing they could have done. By the time my mother was contacted I was in a horrible state as a result of what they were doing to me in the ER. Secondly try and build your child’s confidence. I know growing up the one thing I wished for was to be “normal” like everyone else. After I do have what I call “an incident” I am usually so terrified that it takes me a while to compose myself. It’s like I have to build up my confidence just to get out there and face the world again. I found that in the past, the more I isolated myself from everything, the worse I felt. Sometimes I would let the worrying and the “what ifs” get out of hand. I had to force myself to get back into my routine and each day it would become a little easier. And thirdly, try and maintain a peaceful, stable household. I do remember when I was stressed, my incidents were much more intense. Even my diet had an effect. Caffeine and sugar didn’t cause the problem, but I noticed they made the incidents worse as well. Also when I didn’t get enough sleep or when I had my menstrual cycle, I felt edgy and more susceptible.
I realize this thread is long but I hope it helps one person.