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I have only come across this site for the first time and have read a number of the recent posts; I intend reading the rest when I have more time. I suffer from agoraphobia which makes me unable to be in public places on my own, as I feel faint and dizzy. I was first diagnosed with agoraphobia when I was 20 (I am now 51), but it interests me that the symptoms that people with vaso-vagal suffer from are actually very similar to those I have. When out in public, but also at home at times, I feel faint but don't actually pass out. I have very low blood pressure but my heart rate tends to be fast so I have to take propanolol to slow it down; needless to say, this doesn't do anything to help my low BP. On the few occasions when I have tried to do without the propanolol my heart rate has gone too high so I've been forced to restart it.
When I stand up after a prolonged period of sitting I often feel very faint and dizzy; I know this is down to my low BP. I also suffer from something I haven't read of here yet, but which I feel is part of this syndrome. When I go to bed and lie down with only one pillow (which I prefer for comfort) I often get the feeling that my heart literally stops beating and I have to 'shake' myself to restart it! I then use two pillows and feel OK again. I daresay this sounds crazy but it has happened so often that I feel it must be something to do with having my head in a low position that makes my heart behave in this odd way. I would have thought it would be good to have my head lower, so that blood could flow into it but it doesn't seem to work out that way. If anyone else has experienced this perhaps they could post and let me know.
I can't help but think my agoraphobia is mainly due to the fact that I simply don't trust my body to respond properly and so I'm afraid of fainting in public. This makes me very tense when I have to leave home and this tension seems to make the symptoms worse. It's a vicious circle in a way but I can't see what I can do about it. One of my sisters has low BP (not as low as mine) and she has also suffered with a milder form of agoraphobia, as has a second cousin. My father had low BP also but I don't remember him having any of these problems.
Sorry this is such a long, rambling post, but I just wanted to mention this phobia in case anyone else has the same problems as me. I have enjoyed reading the posts so far (well, 'enjoyed' maybe isn't the right word, but I've got some comfort from them) and I hope everyone finds something to help them with their problems. Forums like this are such a help as we feel less isolate when we know that others have the same worries and are searching for something that will help to alleviate these problems. Best wishes to everyone.