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Author Topic: Back to worrying about Long QT Syndrome again *sigh*  (Read 413 times)

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Offline DahliaDollface

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Back to worrying about Long QT Syndrome again *sigh*
« on: March 11, 2014, 10:10:52 PM »
I had been doing fine with my worries about  Long QT syndrome for a while now. Up until yesterday, that is. Someone in another anxiety group I belong to was just diagnosed with Long QT after being told for years it was "just anxiety".

I swear I have Long QT too as I had a borderline reading about 12 years ago when I was 14 and last year I semi passed out( got hot, weak, had my hearing fade out nauseated,felt heavy and fell to the floor but never actually lost consciousness) 3 times.

Today, I got into a huge fight with my soon to be ex-wife (my health anxiety has ruined my marriage) and without giving too many details, had to walk about 2 miles to pick up my car from her job. While I was walking my left arm felt heavy, I felt off balance and out of breath. Right as I got to her place of employment I started really feeling like I was going to pass out. The feeling passed and I never did but now I'm convinced that this is yet another sign that I have Long QT.

She's been begging me to go check myself into the psychiatric hospital and get some help(what we've been fighting about) but, I don't think I need to go. My anxiety and debilitating agoraphobia (I'm practically bed-ridden) are because I have this fatal disease that is undiagnosed, hard to diagnose and is often missed or not even heard of by most doctors, not because I'm actually mentally ill. I have been very anxious all day and am now having palpitations. I  have a doctor's appointment on the 25th but I don't think I'm going to live until then.

Does this sound like Long QT?
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Offline Lara71

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #1 on: March 12, 2014, 07:31:48 AM »
You will make it to your doctor's appointment.

I had to look up Long QT because I never heard of it. It looks like it's rare. I think you suffered anxiety from fighting with your ex and the long walk.   

Have you ever worn a halter monitor? It constantly monitors your heart to check for arrhythmias for 24 hours.

Worst case scenario is you have it, the doctor prescribes beta blockers which will also help with your anxiety.

I don't think you have to check into a hospital But being mostly housebound and bedridden is no way to live.
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Offline xxAmyxx

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #2 on: March 12, 2014, 08:18:11 AM »
Sounds like you are going thru a lot right now. Hang in there, I think you're going to be OK and your Dr. will confirm it.
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Offline soaringfalcon

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #3 on: March 12, 2014, 08:26:14 AM »
We have a family history of Long QT and had to have my daughter thoroughly checked by a pediatric cardiologist.  Long QT typically does not produce symptoms.  It's also not always fatal. 

I truly believe this is anxiety and urge you to seek help. 

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Offline Thesgman

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #4 on: March 12, 2014, 08:50:41 AM »
Buy a lottery ticket. Your chance of getting more than four numbers on it are hundreds if not thousands of time more likely than you having Long QT, and tens if not hundreds of thousands of times more likely than Long QT killing you.

I came out of hiding to make this post because you sound precisely like I did in 2009, worrying about exactly the same thing as I did. I, too, had a lot going on that coincided with my health anxiety. Eventually, nothing but everyone around me being right came of my Long QT worry. In these last four years my parents, aunts, uncles, and cousins have all encountered health problems and my fiancée had major surgery (at our young age, nonetheless) and is still recovering. I seem to be the only one who's healthy!

However it is inevitable that I will make it through life without encountering some serious health problem; nobody lives as long and as well as we humans and gets to the end unscathed. I've learned that my heart will palpitate occasionally, that my lungs will feel tight sometimes, and that it doesn't mean I'm in danger. Those things and so much more happen to everybody else, too, I've learned. And yet late at night when my mind wanders I find myself returning to these Health Anxiety forums, which I keep as a little bookmark on my phone, and reading everyone else's posts and worries somehow keeps me sane, sane enough to help my fiancée recuperate or be the second person at my father in-law's cardiologist check-ups; these forums keep me sane enough to fall asleep with my phone in my hands while I read.

I'm not really sure how I've gotten better. However, I can tell you that in four years I've seen a lot of usernames come and go on these forums; somehow many of us seem to let go of the crippling focus we've had on our health, we let go of it or it lets go of us. You, too, will have that happen as the odds are in its favor. Unless that lottery ticket turns out to be a winner, of course! 

Keep reading the forums, brother, you'll want to get out of bed soon enough.
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Offline DahliaDollface

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #5 on: March 12, 2014, 01:58:42 PM »
So even though I've had a borderline reading and almost passed out three times, I shouldn't be worried? That just doesn't sound right :/ All the research I've done indicates that I should be VERY worried given the fact that I had a borderline read. This would be a lot easier to dismiss if I didn't have that.

I've wondered if the machine had possibly made an error but, from what I've read, it's more common to have a false negative than a false positive. I was on several QT prolonging medications at the time (Seroquel, Trazadone, Effexor, Risperidal and Lexapro) but from what I've read about acquired long QT I'd have to be taking a massive dose of each of those for it to prolong my QT interval and even still, the fact that it did at all indicates that I have the genetic kind.

I've never had a holter monitor or any other kind of cardiac testing done as Medicaid won't cover it since I have a diagnosed anxiety disorder. Though, if
I live to see my appointment, I'm going to really push to have something done. Preferably an event monitor or implantable loop recorder as I don't see the holter catching anything.
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Offline Thesgman

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #6 on: March 12, 2014, 02:33:59 PM »
Twelve years ago you had a borderline reading and eleven years later, last year, you say you had three near-fainting episodes? If it were I, which it isn't, I know, then I wouldn't be worried about it. If I were back in my anxiety mania then my mind would have made a connection between a borderline reading twelve years ago and probably anxiety-driven near-fainting feelings eleven years later, but honestly the connection between those two is tenuous at best.

I remember reading about abdominal aortic aneurysms and feeling an unusually strong pulse in my stomach. I could see my belly twitch when moth my heart beat, I mean! It was scary. I spent two or three days at least skipping school, lying on my back thinking if I were to move it'd burst and I'd die. Doc saw me, did an abdominal ultrasound, which was normal, and told me not to worry. I've lost weight since that time and I still have a super strong pulse in my belly, but that's just how my body is and my mind, magically, doesn't make the connection between it and a AAA anymore.

You'll feel better after you see your doctor. I remember feeling like I could conquer the world every time I'd see my doctor about my heart or kidneys and he would assure me I was fine. :)
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Offline soaringfalcon

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #7 on: March 12, 2014, 03:08:10 PM »
A halter monitor WILL catch it.  Testing typically includes halter, EKG and an echocardiogram.

Near fainting is actually pretty common as I learned this year when my daughter passed out at school.  I mentioned the family history and they did a second EKG (first was done by the paramedics) and had it checked by a cardiologist.  She is fine, there is nothing at all wrong with her heart.

You've done a lot of reading, yes, but you are NOT a medical professional.  Of the millions of kids that play sports each year, none suddenly drop dead.  As a previous poster said, you have much better odds of winning the lottery.

You have a choice...you can continue to let this ruin your life and relationships or you can get treated.
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Offline DahliaDollface

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #8 on: March 12, 2014, 03:23:28 PM »
Really, NONE drop dead? In my area in the last year alone we've had three kids drop dead from Long QT. Several years ago someone I knew died in her sleep from type three so I'm not buying it. Also, statistically speaking 1 in 5,000 to 7,000 people have Long QT. You have better odds of having Long QT than winning the lottery based on current numbers.

Getting it treated is an arduous task on Medicaid. Often times they decide what you do or don't need and once you're diagnosed with anxiety, all your credibility is taken away and you are brushed off. It's not a simple as making a choice when you are at the mercy of a broken system.

And while I may not be a medical professional, the vast majority of people, doctors and cardiologists included, have never heard of Long QT and don't know any more than I do. However, I do know my body and know that something is wrong. It's hard not to be anxious when you know there are tests/treatments out there but you cannot get approved for any of them because you've been labeled "crazy".
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Offline soaringfalcon

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #9 on: March 12, 2014, 04:29:06 PM »
I don't want to argue with you because I can tell you're in a really bad spot.  In the area I live in, an EKG is part of the standard sports physical before kids can play school sports because they're so aware of Long QT. 

I wish you the best of luck at your appointment.
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Offline panicqueen

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Re: Back to worrying about Long QT Syndrome again *sigh*
« Reply #10 on: March 12, 2014, 10:12:43 PM »
Dude... you don't have Long QT syndrome!  Trust me... it is easy to detect on EKG and if you've recently had one, the QT Line would be in a higher range (can't remember the exact number but I think over 450 gives you that diagnosis)... anyway, I was hospitalized in Dec and the dr there told me that I did in fact "have Long QT Syndrome."  I was scared but didn't realize exactly what it was, just that my heart rate was very high.  When I got out, I went to see my electrophysiologist and he said that I did not have it because my QT line number wasn't high enough.  He also said, "IF that Dr. does truly believe you have Long QT Syndrome, he is an idiot for prescribing you Levaquin (for my infection), as it could kill a person with Long QT.  Anyway, try to calm down.  You don't have it.  I have felt light headed like you at times and even fainted.  Do you have low blood pressure?  That may be all it is.  I drink a lot of Gatorade and am on a high salt diet per my doc's instructions. 
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