adeliedreams (adeliedreams) wrote in fainters_unite,

Introduction and questions

Hello, all. I hail from the outlandishly hot state of Florida in the US. I've been a fainter for the last 10 years, and have had palpitations and a generally low energy level before that. Honestly, thought it was perfectly normal until a few years ago, when I was at a doctor's visit and the doc took my heart rate of 236. Promptly told me to get out, and go to the ER immediately. I marvelled at how so many people could push themselves so hard to lead active lives, and developed a sheer stubbornness to push myself beyond my limits - which I'm sure hasn't helped at all.

The ER visit led to a couple of years of poking and prodding, visiting docs of all manner of specialties, a short stay at a research hospital, and a considerable load of debt. My heart, brain and ears checked out ok, and after all of that, I've been stuck with a loose diagnosis of "autonomic nervous system disorder", a good number of docs giving me the "but you don't look sick to me", or the slightly better line of "there's nothing we can do to help you."

Meds and treatments:
I've been through anti-vertigo meds, antidepressants, flourinef, potassium, caffeine and a whole slew of meds that I don't even remember at this point. Anti-vertigo meds helped a bit with the vertigo, but prevented me from sleeping (a little more on that later). Proamatine/Midodrine was the most helpful for a period of about 3 months, then lost it's effectiveness, and was too expensive to stay on after 6 months, and my insurance company deciding they weren't going to cover it at the standard rate any more. While on proamatine, I had a side effect of constantly feeling like I was getting a low voltage electrical shock. It was annoying, and the docs said it would go away after a couple of weeks, but it didn't for as long as I was taking it.

Vestibular rehabilitation didn't really help. It helped with being able to train myself to fall more gracefully - I've been able to avoid hitting my head as often, at least.

Vertigo - particularly while sitting and laying down.
Low Blood Pressure
Blood Pressure drops when laying down - by at least 10 points immediately, and generally more over time. This is accompanied by vertigo, usually about 10-15 minutes after laying down. Sitting down causes this as well, but less markedly.
Syncope - especially in situations where I change position frequently within a short period of time.
Visual anomolies - Tunnel vision with constantly shifting patterns taking up the enlarged peripheral area of my vision - generally browns, yellows and reds. "Fog" where all I can see is a white fog from one or both eyes - generally after laying down for an extended period of time.
Fatigue is almost constant.
Temperature regulation: I feel hotter than everyone else, and have been told that I'm noticably "warmer" to the touch. Particularly at the hands and feet.

I've found that I can't sleep, unless I'm experiencing vertigo. I'm not quite sure why, though I think it's just the years of conditioning to sleep while "moving".

It's a nightmare to get out of bed after sleeping for more than a couple of hours, generally. For a good long while, it was taking me 2 to 4 hours to work up the strength to get out of bed every day.

So, the questions:
1) Has anyone else had experience with their blood pressure dropping when laying down? Most everything I've read assumes the opposite reaction, including the vestibular rehab, so "common tricks to raise blood pressure/prevent passing out" generally don't work for me.
2) Any recommendations on sleeping? I know I need it, but the more I sleep, the worse I feel.
3) Any physician recommendations? I'm at a loss, locally, even on getting referred out of the state.
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