LONG QT SYNDROME AND VT...

[piggy001]

Hi Everyone,

So I've just returned from seeing my EP and the news is very unexpected.

I had a very lengthy appointment, we went through all my hospital notes and results from the cardiologist and looked back on all my various ECGS and SUPRISE!!!! I've been told my QT intervals are above normal and prolonged. They were hand measured to confirm and now are wondering if these tachycardia runs are short runs of VT????

WELL SHIT!

I was def not expecting all of this and I am thoroughly TERRIFIED to say the least.

I have been told I am at some increased risk for sudden cardiac death, fantastic and that there are various medications I must avoid for the rest of my life.

The EP did not start me on a Beta Blocker yet and wants to wait for the EP which is being bought forward and expected to take place in the next 2 weeks. They also suspect that I may have another faulty rhythm like IST thrown along in there but the EP study will hopefully unmask anything.

I will be going through genetic testing as will my son, my sister and her son who is having fainting episodes after exercise which is obviously very concerning.

So basically here I am very overwhelmed and I don't really know what to do as of now.

I expressed my concern that something could happen to me in the meantime while waiting for the EP study but it was never clearly addressed and I have also been giving something called ALIVECOR to keep with me in the meantime.

The thought of having an increased risk of suddenly dying is really scary to say the least.

Looks like all I'm doing is waiting to find out whats next......

Piggy xx

[Hidden]

Hi Piggy,

That sounds like a pretty scary situation to be facing and I fully understand why you feel concerned. Long QT syndrome is a risk with the drug I took and I've been concerned about the same having been put back on the same drug time and time again despite a stated risk of developing this effect.

If there's a positive here it's that your family's risk is now flagged up and you will certainly be taken seriously. It's good news for your nephew in that he should now receive the treatment he needs...although it may be hard for him to digest the implications. Obviously, this is going to be hard, not just for him, but for all of you. I hope you can support each other during the investigative process and beyond.

In the meantime, sit tight and take any symptoms very seriously. I'm sure I don't have to say that....you know this already!

I'll keep my fingers crossed for you for a successful EP study and some resolution for your entire family.

Good luck & keep us in the loop.

xxx

[Hidden]

symptoma.com/en/info/torsad...

Torsade de pointes is associated with potassium issues. Is it worth taking a look at this article and asking your consultant about it. It seems to be one of those diagnoses which can run in families, causes long QT and the symptoms you describe, but has to be very carefully diagnosed as it isn't always recognised and has unique treatment needs.

I have no idea if this is relevant to you and I am NOT medically qualified in the slightest....but perhaps worth a look for background knowledge.

x

[PattiJay]

Hi Piggy..I will be following you because you are going through so much, and the waiting must be so horrendous for you! Have you ever heard of "Long QT Syndrome"?  For now maybe you could ask your Cardiologist for copies of your EKG and Google what a normal QT measurement is...I think definitely less than 500 ms. Mine is long too, like 550 ms...but not for the same reason as you. My EP at first thought I might have long QT but the reason my QT is long is because my R wave is spread out due to left bundle block. Then 3 1/2 years ago the LBBB caused a lot of ventricular HF, so i got the implanted CRT-D,    ( Cardiac Synchronization Therapy-Defibrillator) device because I also was at risk for sudden death. They have to measure your basic PQRS baseline EKG in ms to determine how your conduction system is working to signal the synchronized pumping of your right and left chambers -both ventricles-from the atrium down as the sinus node transmits its signal to pathways along the heart via pathways and fibers called left and right bundles of nerves and "Purkinje" fibers and "Bundles of His" named after famous scientists and doctors who discovered all these tiny little bundles of nerves that just receive the "catch" and relay it on just like an Olympics race! It's very exciting and it goes on constantly all through the heart! It's amazing that a doctor can just look at your EKG and see a funny humped R wave and see left-bundle-branch-block like what happened to me!  Or see a long measurement of QT on YOUR EKG and be so concerned and want to save your life and be smart enough to get you an EP! YAY Piggy! Now last year I had an nSTEMI! That means on my EKG my ST wave (PQR....the ST would be elevated for a clogged artery heart attack but I had a heart attack with no clogged artery and my ST wave was NOT raised hence "nSTEMI...MI means Myocardial Infarction!" because I suffered a Right Bundle Branch Block and a Left Fascicular Block in addition to my Left Bundle Branch Block. Also 2 wks ago when I had my "failed" ablation , Rt Heart Cath and EP study (they MIGHT do one for you) they discovered that I also have another conduction block in addition to all those other blocks:  Bundle of His blocks...Surpr and Infra Conduction Blocks. So I have almost complete AV Heart Block. Thank God for my device pacing me 100% of the time.    So my advice to you is to spend some time on the internet...look up some of the things I talked about, Long QT Syndrome can be hereditary, your doctors are smart and they are doing everything and you should trust them, be glad you didn't have to wait as long as I did, and fight to find good doctors like I did...it seemed like I had a lot of doctors turn their backs on me and now I have like total Heart Block. So ask as many questions as you want and be a Heart Warrior!  You are strong and smart and we are all proud of you for coming forward with this!!!! good luck and please keep us posted! I gave you lots of information today because this is what happens when the cardiologists DON'T refer you to an EP. When they DON'T try to diagnose you and help you right away. You might not want a device right away, but nobody offered me one till it was too late for me. Look everything up and be calm! You will be fine! Prayers and Love!