Fainting; POTS or Dysautonomia?

Posted by gzezulka @gzezulka, Jun 28 9:43pm

Hi, I'm going to be going down for my second Mayo visit this upcoming week, and I'm hoping my geneticist that I'll be seeing for my connective tissue disorder (suspected Osteogenesis Imperfecta aka Brittle Bone Disease) may be able to direct me to someone who can help me figure out why I am fainting so much.

Long story short, I am fainting often, both at home and in public (though in public is what has been really bothering me). My echo came back as having a mildly enlarged left ventricle, and some mild regurgitation, but I was told that my heart was functioning normally despite the mild structural abnormalities. My EKG also came back normal. I have a really high platelet count, but that was the only thing abnormal with my bloodwork.

I have no idea why I am fainting, but I was told by my partner it could be something like POTS or Dysautonomia, so I'm hoping that I get referred to someone who can help figure out what's going on.

Here are some of my symptoms though, if anyone with POTS or Dysautonomia can relate or lend some advice while I wait for answers, I'd be grateful.

Before I would really only faint if I had recently stood up and walked somewhere, but now I will be standing after walking for a while (like in a store) and I will suddenly collapse. When I faint I am partially aware, just enough to clock that I am falling, then the entire fall I black out. I wake up on the ground, and I recover quickly, usually within a couple of minutes but I'll be fatigued for a few hours afterwards. Before I faint I get very lightheaded (recently I've always been lightheaded though) and my legs will feel weak, it's like I disassociate and then it's lights out.

I've been taking Iron supplements recently, and trying my best to stay dehydrated, and walk slow, but I'm starting to have this crippling anxiety about being in public because I don't want to faint. I also keep hurting myself when I fall because of my connetive tissue disorder.

Any ideas on how to deal with this? Or any ideas on where I might be referred to in the Mayo to get some answers?

Thanks!

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cherawgirl | @cherawgirl | Jun 29 7:06am

I have the same condition. Cardiac workup clean. I have fainting events. They happen in clusters, then I go months without. But when I have them I faint sometimes 20 timers per day. I have not been able to find a trigger. I was diagnosed with neurally mediated syncope (dysautonomia) with unknown trigger. Its debilitating. If you find out what causes yours please put it here to help others like us. Also, I cannot get in any healthcare institution that specializes in this (Duke and Vanderbilt). Seems few treat it. Twice its taken to the ER. Can't plan things, never know when its going it happen. When it does it takes days out of my life. I understand your pain. Yours actually sound more like orthostatic hypotension than dysautonomia. A tilt table test could confirm, though I've read they can produce false results.

cctee | @cctee | Jun 29 9:13am

BTW, how old are you? If you don’t already, get a home b/p monitor and start checking your b/p lying, sitting and standing. Google online how to do it. Make a journal of it so you will have it for your doctor visit. Also, consider support stockings or knee hi socks. Some suggest fluid replacement drinks like pedialyte. Read online about this before deciding if it’s a good idea for you. Also there is a book called the Dysautonomia Project. They have a website too, and Reddit has a large posting community for their Dysautonomia page. Until you get this dx, try to protect yourself from falls, so dangerous. Good luck.