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Time: 11:19:39 PM
Remote Name: 18.104.22.168
I'm a 15yr old and i was told i had v-v when i was 12. I was pretty sick in intensive care and doctors told mum and dad i wouldn't recovber without some major problems.eg Brain damage, in a wheel chair etc. Though i proved them wrong and doin basically everything i was before. I have a pacemaker and was taking betablockers but they made me unbelievebaley tired so i stopped taking them. I don't really have much idea what v-v is or how serious it is. Basically because the doctors don't tel me anything so i've been looking up this site pretty regularly and am starting to see i'm not the only one. I am very lucky to be alive i never go a day without remebering. Things do get pretty hard like anniversaries but i guess thats just life for ya huh. Well i just wanted to say thanx everyone youve helped me lots. If anyone wants to mail me feel free i'll reply at firstname.lastname@example.org
My mother recently told me she had vaso-vegal syndrome for the past 20 years, and that she thinks that's what I have after I complained of nausea and an almost claustrophobic feeling on the last 10 or 20 minutes of airplane flights. I also get extremely hot, and an anxiety takes hold; the claustrophobia is not the feeling that I can't breathe, but that I need to get off the plane NOW. Does this sound like vaso-vegal syndrome to anyone? I've read a bit about it, but it does not seem like something that would be circumstantial like this.
I have seen my daughter drop out of college, lose every job she ever had, and basically become a social drop-out, because of some "unknown" reason. Her father and I just thought she was lazy or worse yet, on drugs. You can't begin to know the heartache we have suffered. She would leave home, not telling us where she was or when she would be back. Something similar to "fight or flight" response in animals. To make a long story short, she has been diagnosed with dysautonomia, which seems to go hand-in-hand with MVP (mitral valve prolapse). We are still in the learning stages, but are in hopes that when her sleep cycle gets back to normal, her life will, too. She has not been getting deep sleep for probably 2 to 3 years, and as a result, her life has been in shambles. She was today diagnosed by a cardiologist as suffering from vaso-vagel syndrome, but I have my doubts about this. She only comes "close" to fainting, only dropping to the floor one time and remaining there until her grandmother found her, who thought she was dead. She only "came to" when she was patted and pulled and talked to loudly. She thought she was in her bed when in reality she was on the bathroom floor! We feel we are on the right track now. She is so TIRED of tests and doctors. If she will just bear with me a little longer, I know things will be better. She is on anti-seizure medication, in hopes that she will get some deep sleep. I don't have the time to go into all of her problems, but I truly feel they all stem from the fact that she was born with dysautonomia and MVP. She was a very nervous child, very serious, and easily frightened. It's a sad shame that she is now 23 years old and has had her life basically "on hold" for the past 4 to 5 years. Her father and I can now see a light at the end of the tunnel - 6 months ago we couldn't have said that. Hope this info will help someone understand what might be going on in their life. Good luck!!!