Symptoms still there, but as of yet, no solution

[kardia]

I've had heart issues for almost 10 years on and off.  I used to be on the local swim team (for 7 years) and would frequently have extremely high heart rates.  My coach would have me get out of the water and lie down until they slowed down... sometimes it would slow down immediately, other times would take the rest of practice (up to 30 minutes).  We finally saw a doctor (cardiologist) when an EKG after a fainting spell showed Long-QT Syndrome.  They dismissed it as a freak thing and computer glitch.  I was given the "free & clear".  In the last 6 months, though, I've had many symptoms... (though, I have normal or low blood pressure)... not all these happen at the same time (but often, at least two)

*weakness in my limbs
*heart palpitations
*dizziness & near fainting (4 or 5 times) & disorientation (like the world "turns" or gets shaken and set down again)
*chest pain (lasting anywhere from a stabbing second to hours at a time... usually an hour to a day after exercising or a stressful day... not usually immediately, but it has happened)
*tingling in hands & feet (especially fingers)
*headaches for no reason
*fast heart rates (160 bpm while sleeping woke me up... not a bad dream)... it was recorded on an event monitor my EP doctor gave me
*sudden ringing in my ears (just happened)

In June of this year, I had an EP study done... miserable.  They couldn't get it to do anything abnormal, but they did say it might be in the sinus node, which is a dangerous place of the heart to manipulate.  I was sent home and haven't been to see the doctor since.  I have an appointment for September 4th, but am worried for "now".  I am still having horrible chest pain at times and fast rhythms at weird times.  I get absolutely exhausted after that happens and will sometimes take 3-4 hour naps that afternoon (and then sleep a full night of 8-10 hours that night).

Any advice?  Should I look into taking medications?  What would be the side effects?  Is that something that is often treatable?  I was told they found several episodes of atrial tachycardia on my monitor and a few other things I didn't understand. (none of the major symptoms happened during the month of using it, but just the fact that they found these things worries me)

I have had two tests come back as having a Long-QT interval by computer (QTc was 475 & 466), but they evaluated the intervals and dismissed it.

I have talked with many people about this and they assure me everything will be fine, but I am still scared.  This is really quite unknown to me, and the fact that these problems are still being discussed (because they really happen).  My grandmom and granddad on separate sides of the family had some kind of heart disease.

Thank you for your help and advice!  I would be willing to do medications if necessary, but not really a favor of it.  I am just tired of missing out on the things I enjoy (swimming, running, etc. because I get dizzy and really, really fast heart rates)... even going to camp and walking on the beach are difficult because even a little walk will usually send my heart rate up to 170-190.  Running is out of the question... 220 a few times.  Swimming once show it up to 250 bpm.

thanks,
Kristin

[KLB32]

Kristen,

Did you happen to be on any medications at the time these Long QT intervals were taken?  The reason I ask is I once had a Long QT interval on an EKG but I was taking a medication at the time noted for its ability to increase QT interval.  I have not had that problem since.  You definitely want to have this ruled out by an EP (not a regular cardiologist) who is experienced in dealing with Long QT syndrome.  It can be dangerous left untreated.  But also keep in mind those computer generated (EKG) QT intervals are not always accurate.  It's best to have an experienced doctor evaluate it rather than rely on the machine readings.

I personally think it's time to consider medication.  It's obviously affecting your quality of life.  A heart rate of 250 is not normal and can lead to other problems.  I can tell you  that beta blockers have helped my tachycardia tremendously.  There are some side effects but they're so much easier to tolerate than having a rapid heart rate.

Good luck and keep us posted after your appointment!

[kardia]

Actually, I have seen (and am seeing) an EP.  He (and his team) calculated, by hand, the interval and came to the conclusion that it is "not" long.  No, I was not on medications anywhere around having those EKGs.  I know the computers make mistakes and calculate differently, but is it common for that to happen two times?  (there was a 5-year break between the two tests).  I also had a stress-test (EKG with treadmill) after the first one and nothing was suspicious (that was evaluated by a cardiologist... who is now an EP).
One thing I'll add... I went jogging yesterday (short sprints, short jog, walking, short jog, sprint, walk, etc).  It was not a long distance at all... around my campus (which can all be seen from one place standing.  My heart rate was 220 almost instantly.  It took nearly 6 hours for my heart rate to go below 140 bpm.
I am getting interested in medications (though I've never enjoyed the thought).  What are the side-effects of common meds?  I am a full-time college student & work full-time (have my own music studio teaching business).  I will be 21 years old soon.  I can't afford to lack energy or be sluggish, as I've heard the medications often cause.

Thank you so much!
Kristin

[KLB32]

I'm sorry you have been feeling so poorly.  I didn't start having these problems (I have many of your same symptoms) until I was 30.  I'm 33 now.

Make sure when you have your follow-up visit, you ask them directly whether or not they have experience in diagnosing Long QT.  It's rare and even an EP may not see if very often.  If you still don't feel comfortable, you could always seek a second opinion.

What were you doing when you fainted?  If you were exercising, that would be more worrisome than if you were just walking around.

It's possible you might have a rhythm problem like SVT which my understanding is benign but you would want to treat it to keep your heart rate down.  Have you been able to catch any of these episodes on the monitor? It's hard to diagnose without catching it on an event monitor.

It could also be something like IST (Inappropriate Sinus Tachycardia) or POTS (Postural Orthostatic Tachycardia Syndrome).  I have not taken the test for POTS but my Dr. strongly suggests I have it as a secondary condition to my connective tissue disorder. He said the treatment is beta blockers (which I take anyway), and increased fluids/salts.  A tilt table test would help rule this out.

When I first started taking a beta blocker, it made me tired and sluggish for about 3-4 weeks.  I've also gained about 7 pounds but I was super thin to begin with so I probably needed to gain a little. ;)  Honestly, I don't think I have any side effects from it now except maybe for a slower HR which is actually a welcomed relief from having my heart rate hover in the 130-140s for so long.

Don't stop until you have answers.  Doctors tend to be more dismissive of younger patients (or at least they have been in my experience). If you don't get answers from one, then get another opinion and find someone who takes it seriously.  If you still can't get a diagnosis, I don't think it would hurt to take a low dose beta blocker if it's offered to you.  I resisted taking them for a long time and wished I hadn't.  I feel so much better now on it than I did before (well, except for the occasional palpitation flares but I had them before I started taking the med).

Good luck!

[kardia]

Well, I do have some updates... My doctors are positive I don't have Long-QT Syndrome, but for the chest pain, palpitations, racing heart (not constant) - ultimately atrial fibrillation & tachycardia episodes, I have been prescribed "Tenormin - Atenolol Tablets" to be taken once a day (25 mg) at bedtime.  I noticed there are quite a few side-effects and complications can happen.  It also says not to drive, which I have to do often to get to work.  I am going to start taking it tonight (and don't actually work, teaching music lessons, until September 8th, so limited driving anyway).  Do any of you have experience with this medication?  It is a beta-blocker, but I don't know much about it... and am wary of taking a medication... last time, I ended up in the ICU in the hospital for 6 nights with a terrible allergic reaction.
Thank you all!
~Kristin