I HAVE LONG QT SYNDROME

[@C-Clan1117]

I also was diagnosed with this issue. I was heartbroken when I heard “no sports”. As a little kid I was very athletic loved sports and all. For 1 year and 7 months I was excused from sports and gym all running and everything. At the time, note I was a small kid and didn’t think much of anything. To this day I still have long qt interval. I go to the cardiologist every 4 months and get checked up. So far im doing great. Never had an issue either which is great. I was diagnosed around 10-11 years of age, I am now 22 and still have to go to the doctor every 4 months. It’s a risk but I am allowed to do sports and I’m glad! Don’t worry you’ll be great. Don’t push yourself, listen to your body if it’s tingling and all. STOP and take a break. You got this!

[@calvinmurry1096]

I quit boxing because of it. I could train. But I noticed that in a match I didn't get tired. I got weak and dizzy. Felt like I was blacking out. I knew I had to shut boxing down. I don't get tired. I get flat out weak. Dizzy. And certain I was going to get knocked out. And I could feel heart flopping. So frightening.

[@closinginonclosure]

This is a condition that should be taken extremely seriously. I'm 32 years old. Had the first seizure of my life about a year ago. Went to a hospital and after all of the major tests, they said I was fine and just had a seizure brought on by a, number of possible things. Today I was just discharged from a 7 day hospital stay. I was told by all of the doctors how lucky I am to be alive. I literally died twice and was put on life support. They used defibrillators on my about 10 times, and by some miracle I'm alive now. I now have a defib/pace maker unit in my heart. Most people with this condition show up at the hospital Dead on arrival, or die while in care. Please don't wait to have a violent episode and get a unit installed immediately! Also, ingest plenty of potassium, phosphorus, and magnesium as it's beneficial

[@philipphilippides3726]

closinginonclosure wonder how you’re doing ! My wife has the same thing and she had an ICD implanted and she’s taking b blockers. Do you know the prognosis? What are your doctors saying on this after all these things you’ve passed?

[@sarah-janemelnychuk541]

I have LongQT, my sister who passed recently had a Torasades episode which is how we found out about this condition which appears to be a genetic condition in our family, not acquired but perhaps worsened through the medical my sister had to take and medication I am currently transitioning out of. I have been telling medical professionals my symptoms for a few years now and they always dismissed them. Also, I have had a tone of ECGs done and my sister who recently passed had her heart closely monitored for well over 10 years. A cardiologist didn't pick up on my sisters longQT and medical professionals didn't pick up on my LongQT no matter how many ECGs were done and no matter how much we had our heart health looked into. LongQT can simply hide from the best of cardiologists. It's not always easily found because they have to basically do some math to evaluate the potential for longQT and if you don't have a significant LongQT it becomes easily missed. Right now, it usually takes the sudden death of a family member to find LongQT. Other aspects around sudden deaths can further complicate things. My Grandfathers sudden drowning death when he was 35, my mothers sudden death in her sleep when she was 33, and my sister was 53 with her sudden and the only reason why our families genetic heart condition was found was because my sister had on a haltor monitor otherwise we might not have come to know that our family has this heart condition. LongQT has only been known about, studied, and researched for only 30 years. They know very little about the condition and lack resources to detect this heart condition when you first become symptomatic. I have been symptomatic for a few years now. I went to hospital with feelings of dizziness, short of breath, I also had chest pains and edema in my legs. The hospital dismissed it as heat exhaustion. Chest pains, albeit a rare symptom can still be a symptom caused the medical staff to dismiss all my other symptoms. Last time I was in hospital I told them I have LongQT which they wanted to still dismiss because of my chest pains. I told the Doctor, my cardiologist diagnosed LongQT plus I have this chest pain so figure it out but my cardiologist diagnosed LongQT so if this chest pain is not part of LongQT that still needs investigating. Anyways, it's been a long journey and unfortunately took the sudden death of my sister for me and my brother and my other sister to get diagnosed with LongQT even with the sudden deaths in previous generations. I say this to let you know that even if you had done more, medical professionals could have still missed it as they did with me and with the hundreds of ECG's I had done. So go easy on yourself.

[@Unclewich]

I feel you on that anesthesia. I had two rounds almost back-to-back, and with the reduced lung function, it was no joke!

[@guynellerandle9742]

Thank you for sharing this. I am affected by this, as well. This is the first one I have seen.

[@lorenzoflores5406]

What was your lqts symptoms

[@Darylmerry]

I lost my wife and my sister in law in August suddenly to long qt

[@bellaaa6196]

Im 12 and i have long qt syndrum aswell..... we are still getting the result back from the monitor any tips?

[@letgo1064]

isa How are you doing? Have you considered taichi for heart condition ?

[@josephmonceaux1677]

Yes I had long qt since I was 14 when i went in to cardiac arrest and died for like 8 minutes now i have an in planted cardiovascular defibulator and make sure if they out you on meds make sure that you take it as recommended and find a good dr

[@said1975]

I have taken 1 tablet 10mg domperidone in january this year after that medication tablet i had heart problems, scary arritmia and middle in the night or morning i wake up with fast heartbeat, dizzyness and i feel on my forhead sweat, they found i have the fast heart beat problem on the electrical place where the heart beat produced. Domperidone can cause long qt syndrome i have read i hope i dont have this syndrome, god bless you and stay strong good soul!!

[@stellabell5463]

Are you on beta blockers as they can cause breathing issues. Also get checked out for pulmonary hypertension.