adeliedreams (adeliedreams) wrote in fainters_unite,
adeliedreams
adeliedreams
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.

Symptoms:
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.

Sleeping:
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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Because your issues sound more complex than mine, I'm going to refer you to a larger group on yahoo. Not saying that this group isn't good, but it's fairly new and still seems to have only a few members.

http://health.groups.yahoo.com/group/NeurocardiogenicSyncope-Fainting/

The group has a pretty high volume so I have my settings on "no mail" at the moment but when things have been bad and confusing for me, they have really been an excellent source of support. Also, I think there are at least a couple of members from Florida that may know of decent doctors.

With regards to your heart rate, has it been diagnosed as anything and/or treated?

I have POTS and NCS but I also had Supraventricular Tachycardia (SVT). My HR would go up to 150 or above (but never made it into the 200's range). The only med I responded to for that was a Calcium Channel Blocker (and they tried lots of other thing first), which made my already low blood pressure, lower, and made me generally sicker. Since I had an extra electrical pathway in my heart, I had a cardiac ablation for the SVT so that I could get off that damned drug (Cartia XT).

Fortunately for me, florinef works most of the time but I have a host of other health issues so I am on disability.
Because your issues sound more complex than mine, I'm going to refer you to a larger group on yahoo. Not saying that this group isn't good, but it's fairly new and still seems to have only a few members.

Thanks, I've joined over there, waiting on approval. Definitely will be sticking around here as well - the more the merrier.

With regards to your heart rate, has it been diagnosed as anything and/or treated?

Alas, nope. It probably should've been, but the docs around here haven't really been that great.
How often does your heart rate speed up? and how long does it last?

The first time mine sped up, it woke me from sleep and I went straight to the ER. The staff were both baffled and fascinated by me because they don't see many (or possibly any) 27-year-olds with HR's that high...and their usual methods to fix it didn't work. They were going to try and "shock" my heart back to normal but fortunately waited for the cardiologist to show up and he tried some stuff that they didn't.
The really sharp spikes are rare, fortunately. Took about 14 hours to drop below 160 the last time. I get moderate spikes 2 to 3 times a day lasting from 10 minutes to a few hours.

I've gotten a good number of comments about my age, too. Turn 27 next month.
Welcome Adeliedreams! I'm Kylie, I started this group, it's my baby! Glad you joined us, but sorry that you are suffering.

A lot of what you mention sounds like a variation of POTS_ your symptoms sound a bit like mine. Try and get to Blair Grubb in Ohio? I'm in the UK, and even I'm starting to consider going to see him from out here!

Hope to see you here often

-Kylie
I will have to look him up, thanks. :)