Acquired or Congenital LQTS? Did We Cause Our Heart Issues??!

Hi Group,

I'm posting this on the general board as I'm not sure where else is more appropriate. I just got my ICD a few days ago after a week of testing in the hospital (was a nightmare) and the Dr.'s, though they STILL don't know for sure, seem to think I have Long QT Syndrome due to the very long QT intervals on my EKG's.

I've been looking up anything and everything I can on this condition and understand that there is acquired and congenital LQTS. No one in my family has dropped dead at a young age or has had any fainting spells (other than the one I had that led to this saga) so I'd be rather surprised if this is congenital, however, I think I'd be even MORE surprised if it was "acquired". From reading online the "acquired" type can be caused by certain medications (decongestants, antidepressants, etc) but I haven't read anything stating whether it's a temporary thing once the medicines are stopped or reversible or only w/ overdoses of medicines, etc? It just seems rather extreme that someone would develop this serious condition and need an ICD from taking a low dose of an FDA approved antidepressant that EVERYONE seems to take w/ no problems (if i'm reading this right). It seems that no one can tell me probably b/c no one seems to know.

Maybe it sounds silly, but I would feel a lot better if this was congenital or else I feel like I am personally responsible for causing it (I have been on Zoloft for about 7 years for anxiety and Tamoxifen for a year and a half for breast cancer) unless it's reversible (then i'd be thrilled!) So I guess I'm looking to see if anyone out here knows anything about this -- it just seems strange that it doesn't seem like the Dr.'s even know and are just kinda taking shots in the dark to explain this stuff. Another question, can stress/anxiety/depression actually CAUSE any of these heart ailments? (not just LQTS but ARVD, ventrical Tach, etc?) Is stress what is causing this stuff? Sadly, if that's the case that stresses me out even more... =-)

Thanks guys, hope everyone is doing well!


P.S I know there is a genetic test I can do but I won't b/c it's not covered by my insurance and is several thousand dollars.

3 Comments

more stuff.....

by Bionic Beat - 2008-06-09 08:06:07

Hi,
You sure aren't alone.
I've had heart stuff since a child but wasn't diagnosed til 27!
I never "squatted down" as a child, just knew to not do it, had periods of faintness/dizzines/lightheadedness and in those days (I'm just turned 60) they said I was "outgrowing my strength"!
My MVP/PAF was discovered while in hospital for an unrelated issue. The doc who did the pre-anaesthesia asked if I was dizzy or faint, no I was fine. He told me "don't move and don't get up", ran off and came back with about 16 docs who'd been on rounds.
The head of Cardiology told me to "squat", I told him "I can't cause I'll come over funny". When he insisted, I did it and came to on the bed.

Scroll forward decades, this past year has been a cardiac nightmare and I JUST found out that it's NOT NORMAL to feel my heart beating in my head, neck, chest, abdomen and feet!
For years, I could tell them my pulse/bp, as I could feel it beating throughout my body.

Yes, at 59 1/2 years of age, they implant a PM and do an ablation to "cure" my AFib and I find that I cannot feel my heart beating.

It scares the hell out of me, to wake up and have to take a long look around to see if I'm still here.....but I feel fabulous and am getting used to not sensing my heartbeat.

As Amy says, it was normal for me to feel my heart beating and my b/p, I thought everyone knew their HR/BP naturally.

I do miss feeling my beat to a different drummer but am getting used to it. I just kind of miss the vibrations. Seriously.

Good luck, take care.

Bionic Beat


stuff

by tpod - 2008-06-09 09:06:03

i'm terrible at subject lines, and i never capitalize. sorry in advance.

so, here's the thing. quick parallel -- i used to have passing out episodes, lightheadedness, that sort of thing. as a kid, even. but i never associated it with anything out of the norm. fast forward thirty years (i'm thirty, OMG!!) and i'm sitting before you with a diagnosis of brady/tachy syndrome, MVP, MVR, SVT, and persistent afib. all things i've had my WHOLE LIFE...but never knew.

it took me a very long time to associate what went on in my childhood with what's happening now. but it did happen, and it does tie in completely, along with a few other things.

these are all questions that you can get to the bottom of. it takes some time, though, to remember the associations. for instance, when the medications they started me on for the tachycardia slowed my heart down, i swear to you, i felt like someone had hit me with a mack truck. i was SO TIRED. it was apparent to me (and to my doctors) at that point that i'd been living with the problem for so long, it was normal for me. i rarely had complaints of dizziness or shortness of breath -- because i was used to feeling that way. and when i'd get light headed, i knew to sit down, and it would pass. it's how i grew up. it was NORMAL. i was never on a heart monitor until 2005, because i had no reason to be. i didn't know what a 'normal' heart did. mine had always kind of worked for me. heh. how would i know what it was doing wasn't normal?

pay attention to the 'normal' things. or when you notice that you don't feel a certain way anymore, write it down. you'll be surprised how many things that used to happen don't anymore, and how many that happen now that didn't used to.

good luck, and take care,

amy

ARS

by ElectricFrank - 2008-06-10 01:06:56

I've given a name to a new condition. ARS (At Risk Syndrome) is created by medical marketing. Just pay attention to the words "At Risk" in TV advertising and the talking head doctors being interviewed.

Marketing has discovered the power of fear and uses it effectively to sell everything from political to medical. The risk of sudden cardiac death is never stated in meaningful terms...always as a vague feeling that "I could drop dead any minute if I don't have my ICD". So in the next few minutes if I have one of those funny feelings that may be inner ear vertigo, I will be hit with fear that "this is it". That produces the well know panic attack symptoms one of which is passing out. Now I will be scheduled for a bunch of tests which are inconclusive, but just in case here comes the ICD.

I could go on and on, but I think you get the dirft. I've been tinking of starting a blog around FEAR.

frank

You know you're wired when...

You trust technology more than your heart.

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