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Anyone have experience with Long QT?

My doctor just told me I have something called long qt- I've never heard of it and when you google the term some pretty scary facts come up. Has anyone had any experience with this or maybe just know something about it? Is it something I should actually be worried about?

Also, does anyone know if it can cause muscle pain and fatigue?

Thanks all and Happy Holidays!
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Avatar universal
Hi Dear

I too have Long QT Syndrome.  I had a cardiac arrest from the Long QT (died) first time in 1995.  Fortunately I was in hospital at the time and received immediate emergency treatment.  Later I had 2 more arrests.  Once I had the 3rd one I was rushed into the operating room and had a pacemaker installed.  I have been fine since the pacemaker.  

I had no symptoms and no sensation of something happening.  Only after I was revived by medical staff did I know anything had happened.

This is a VERY serious diagnosis and you must inform others in case there is an emergency.  If you are not responded to immediately it can cause death.

Seek advise from a good Cardiologist and stay on top of your heath.

Good Luck!
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Avatar universal
The fatigue and muscle pain started long before the diagnoses, so I suppose it's unrelated. I haven't had any seizures, a few fainting episodes throughout my life but I've had migraines for years and always associated it with the aura I get with the migraines. I never thought I had any heart problems. My mother has PAH and many of my uncles have had heart attacks at young ages but it never occurred to me that I could have a problem.

One of my sisters has also been diagnosed with Long QT and the other sister hasn't been tested yet. I am so afraid that I may have passed the gene on to my children and hope to get in with a geneticist soon to find out.

I found the list of drugs to avoid; thank you for the information and advice. Also, I will ask for a referral ASAP.

Thanks again
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Avatar universal
I also meant to add that LQTS does not cause muscle pain or fatigue. Did you just start betablockers? This could possibly be a side effect from the medication.
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Avatar universal
Hi Sarah,
Yes, this is something you should worry about. Did your doctor start you on betablockers? If your doctor is not an Electrophysiologist (cardiologist that specializes in heart rhythm disorders) then ask for a referral to one. These are the only doctors trained to diagnose and treat Long QT Syndrome properly. Check with the SADS or CARE websites for doctors.
Do you have any of the symptoms, fainting, seizures, etc.?
Also you should mention this to all your family members, siblings, children, etc. so that they can be screened for it.
Long QT Syndrome can be scary at first but once you are on treatment life does go on. Betablockers are the best treatment in most cases except for LQT3 so that is why it is very important to see an Electrophysiologist who can determine this by your T wave pattern and possibly get genetic testing started.
There is a QT Drug List available on the internet that lists all the medications known to prolong the QT interval and all these drugs should be avoided.
Keep learning as much as you can about LQTS and ask any questions here and I will help if I can.
Good Luck
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