I love all your vlogs, Noelle; this one was eye-opening as you're the picture of health ALWAYS! Much love from AZ, I think of you every time we're in Downtown Chandler... just two days ago. Be well, be safe, be loved!
Hello, thank you for posting this video. I was recently diagnosed with long QT, I am seriously scared as I had never heard of it. My diagnosis came out of left field as I too am asymptomatic and it was purely by accident but I thank God! In any case thank you for sharing your experience, I am currently trying to educate myself as much as I can so as to make the best choices for my care. I also find it reassuring that you seem to have a “normal” life as far as career, travel, home life and so on. Honestly tho I haven’t seen your other videos but I will (just subscribed). Take care and thanks again!
I am so glad you posted this! I wondered if you could be a FA with a heart rhythm issue. I have a heart rhythm issue too -- A fib -- that comes and goes. Happy to have found you heart sister!
Thank you for this video. My husband had cardiac arrest because of Long QT this year, also was clinically dead for minutes, he was never diagnosed before this incident. Just like your sister he got back to normal life in just weeks with a ICD implanted. I feel like more people should do checkups and more people should know about this condition to prevent tragedy. Thank you for making this video
Thanks for sharing. I was diagnosed 11 years ago and have always searched for content and community, but there’s not much out there. It’s nice to hear about others going through similar experiences. I was the one one that went into cardiac arrest in my family, but then we found it in many of my family members. Would love to hear more about your sisters experience as well.
Thank you for this!! Just found out this last year. I almost went into cardiac arrest. It was scary. Trying beta blocker now and the fatigue is killing me! It’s nice to hear that others deal with this weird syndrome.
I learned I had it because I was fatigued. Fatigue was due to slow heart rate. Went to electrophysiologist who told me I had long QT. I'm now on beta blockers and am even more fatigued. I've been on nadolol for 6 wks. Did you start to feel any better over time?
Hei, My Life has turned upside down in a heartbeat, I collapsed in the forest and was resuscitated, I have long Qt syndrome, and am loving in torture at the moment, I'm terrified of a second attack. Thank you for your video.
I’ve had this since birth. Was constantly fainting as a kid. Was diagnosed as epilepsy. Only was diagnosed correctly in 2018 when I fainted on a flight and ended up in a cardiac ward. I need an implant. I’m constantly nervous about raising my heart rate and dying.
They usually take the loop out or replce it after 3 years i dont know why they just left it in. I have 1 in and can you tell me how you can fly im afraid to fly with this condition
I honestly didn't really know how serious of an issue this was. I went to the ER last year for chest pains, found out I have ischemia and Long QT syndrome but as far as I remember, my cardiologist didn't act like it was a big deal at all. Didn't tell me to change my lifestyle in any way or take any medications. Now my daughter has to go to a cardiologist so I was reading up about Long QT syndrome and was like uhm yea this is kind of important
I feel like long qt isn’t super common of a diagnosis so definitely diagnosis and treatment is not as fast for many patients! But glad you are looking into if more especially because it is genetic and can affect others in the family as you have experienced as well 😭
I have just been diagnosed with this from fainting behind the wheel and crashed my car currently have the implant device that you mentioned and on nadolol beta blockers
Hi thanks for making this video as you said is not many of actual people telling about this . My son is been diagnostic with this he is a very active kid and play football how the medicine affect you ? Do you do any work out or sports ?
Not the creator, but I have long qt and I am super active. I am in my 30’s, played competitive sports throughout my life, work out daily, ran a bunch of half marathons, and compete in distance paddling. I have an ICD as well. I would consult your doctor, but it’s possible to live a super active lifestyle.
@ICH Most beta blockers are extremely effective in long QT and are usually very safe medications! Nadolol has the benefit off only needing to be taken once a day so you can be sure off a good coverage and no fear off missing a dose! Propranolol was commonly used for ages but recent studies have show once a day beta blockers like Nadolol, Bisoprolol, nebivolol are very effective
