Long QT Syndrome: Want to connect with others

Not yet. We’re being monitored and avoiding prolonging QT drugs. We have the ANK2 mutation and all I know is it causes cardiac arrhythmias and LQTS 4.

He was born with a hole in his heart (ASD) and cardiomegaly, but it’s resolved. Currently, no symptoms that were aware of. He has a holter monitor currently. I, on the other hand, get episodes where my heart will randomly start racing, bad cramping headache and my vision goes black, but I’m not sure what it is (LQTS or an arrhythmia or anything). I’m waiting for more testing to be done.

@ashtonnorris The Genetic and Rare Diseases Information Center has more information on Long QT Syndrome 4 here: https://rarediseases.info.nih.gov/diseases/10432/long-qt-syndrome-4

@ashtonnorris Hi, I have had a few of the symptoms you mention of the fast heartbeat and your the first person that mentioned vision going.Black. before they got my pacemaker adjusted correctly I too had one episode of an arrhythmia that my vision went black. It never happen again in the 9 years I had the arrhythmias. I have had a heart transplant now but thought I would mention that. It was my first bad arrhythmia and I did have a pacemaker which at the time was only set to shock me and it did that night but after the black vision issue. So my thought is the blood flow during an arrhythmia basically stops and that's what finally caused the vision issues lack of blood flow. Just something to maybe ask your doctor.
Dana

I'm so sorry to hear about your situation. It's very similar to mine I'm 35 years old and I feel like my life has been ripped from my hands! I'm not sure which type I have yet I'm seeing my doctor today. The other day I passed out and smashed my face and broke my nose... that was my first episode of fainting I normally have seizures (being ecliptic as well) I get an idea of when I'm going to have one.. this was scary because it came out of nowhere. They said at the nurmous ER visits all summer long a million different things. One where I had low potassium and magnesium made the most sense.. they as ER doctors are not capable of diagnosing an actual type... but I wish they would at least give me an idea of how your releasing me with potassium in the negative cbc over 12.2.. idk seems like everything in my opinion has changed. Depression is the worst I have ptsd so I get anxiety over everything.. Depression i had to stop taking my meds bc it was the reason possibly 3 years ago when it first appeared that I needed to get off of most my meds. I did and went asymptomatic for 2 years... just this June it came back and came back for the worst (symptom wise) my last elongation was 490. I'm actually getting a portable Ekg. You should look into like a smart watch that can monitor your sinus rhythm maybe it might help give you an idea when you can do something and when you can't. Staying hydrated with electlytes as you know help... so I would just let your friends know you have minor restrictions and make sure they are aware of your Depression and it honestly makes you feel better with them being around. In the beginning a couple of my friends wouldn't even talk to me because they where afraid to be around me.. but now having the watch I can reassure myself so I don't scare everyone away. I hope things get better for you! I'm praying for you and everyone on here.. this by far is a horrible heart condition seeing as there isn't much research backed behind it!

I was diagnosed with my prolonged QT over a year ago. Was advised to stop taking my antipsychotic medication, which I did immediately stopped all medication’s. I’ve been seeing a cardiologist who did an ECG every six weeks as well as the stress test on the treadmill. I have also had a heart ultrasound. After all these tests, the doctor got the results and I still have not heard back from the doctor. Also, I have been told is that my prolonged QT is not getting any better it’s still the same. I’m now having dizziness pounding heartbeat. I can feel it in my throat. Feels like there’s air coming out of my throat. Sometimes I get very dizzy when laying down sitting up standing doesn’t matter I’ve only fainted once so far no matter how hard I try to get a hold of somebody to get some answers I can’t. The doctors are not helping me.

I also wanted to tell you you're not alone I was diagnosed 3 years ago. I went off the zoloft and thought everything is going good... untill this June for an unrelated issue had to go to thw ER my qtrs barazzt was 500... since then my cardiologist has given me the bullshit of all bullshit you can be told when I toldnhim my syncopated episodes did not display any auruas he continued to tell me "as I feel it coming " like what does this guy note understand I DONT GET WARNINGS... HE DIDNT EVEN LOOK AT MY ECG RESULTS FROM PRIOR TO THE SYNCOPY.

On that note I fainted again yesterday the one HUGE peice of advice I can give I'd Make sure you don't have an electrolyte embalance mainly potassium... magnesium if your sick or just in regular daily hydrate drink anything pertaining to increase your electrolytes

Hello @corinna1977

When you last posted you were having problems with prolonged QT. Have you been able to get any help with these symptoms?

I have prolonged Q T interval , (prolonged Q T Wave ) which led to a sudden cardiac Arrest.

They implanted a AICD when age 32 after suffering sudden instant death.

I have had a defective lead wire that caused my AICD to fire at highest level.

They had to do life threatening lead extraction surgery.

The surgery was successful in 2008.

I had another AICD put in in 2008. The battery went dead and I had another cardiac arrest in 2015 as a result.

I have another AICD.

I have SVT and Atrial fib as well now at present.

Also an ascending aortic anuerysm and mild mitral valve and Tricuspid valve insuffiency.

@britt013