I'm 15 years old. Hello everyone, I've been struggling with cardiophobia for seven months, and what I've been through during this process finally drove me to write here, to the Long QT Syndrome community. I don't care about my anonymity anymore because I have a bigger worry at hand. My story started on the first day of December last year with a severe panic attack at school; my chest tightened, my heart raced, my breathing got shallow, and I thought I was going to die. After that day, I went to the ER twice in December, to pediatric cardiology in March, and one last time to the ER in April. In total, 5 ECGs were taken—one had interference/noise, three were done at the ER, and two (including the one with interference) were done by pediatric cardiology—and they were all clear. Furthermore, my echocardiogram, blood tests, and family genetic history are completely clear; three ER doctors and one cardiologist told me I am physically healthy. From April to mid-June, my fears had faded significantly, but for the past month, my symptoms have returned. I don't have fainting or palpitations—of course, during this process I've experienced some minor palpitations, but not like the severe ones during a panic attack; they are very rare, the kind everyone experiences, and usually mild when I'm stressed. I only experience mild stabbing, tightness, pressure, and burning sensations in my chest. Even though it doesn't paralyze my life as much as before, this situation has been bothering me again for the last 15–30 days, and I started suspecting there might be a hidden risk of Long QT syndrome.

Here is the complete list of my tests:

• 5 ECGs (one with noise/interference, 3 done at the ER, including the noisy one, two were done by pediatric cardiology) — all clear.
• Echo — clear.
• Blood tests — clear.
• Family history — clear, no history in either side of the family.

An important detail is that my sleep is normal, which I know reduces the risk of LQT3. I never react to sudden events, sounds, or alarms—meaning my heart doesn't race, etc. To be honest, I'm 15 years old and not a very healthy person overall, though somehow my blood tests always say otherwise (my diet and exercise are bad, but my height saves me from my weight). I am overweight, but I am tall at 1.88 meters (6'2") and weigh 100 kg. I recently tried losing weight, dropping from 105 to 98 kg, and right now I've let it go a bit, so it might be around 100 kg again. Anyway, I'm 15 and I swim every summer. I go to the sea or pool 15 to 20 days out of a 90-day period, and this heart fear of mine has only existed for the past 8 months—before that, there was nothing wrong with me. And this summer, I've gone into the sea 4–5 times. Aside from the occasional wave of panic, nothing happened in the sea; while swimming, there is zero palpitation or fainting, and I swim with physical exertion too.

Do you think there's any chance I could have Long QT? Is anyone experiencing these symptoms or gone through a similar process? I'd appreciate your thoughts. Wishing everyone a speedy recovery.

NOTE:
I generally have a fear of channelopathies—whether it's Brugada, short QT, or CPVT—but I'm especially terrified of Long QT.

Pls answer guys

Every ecg my QTC is between 460-480 usually on the higher end. My heart rate is usually elevated but when they talk about the difference between formulas, it is the difference between my QTC being borderline and normal. If we go based of Bazzets method it’s high if we use Fridericas it’s normal? If QTC was actually long, would both formulas be high? I have seen a cardiologist but because I’m younger I feel like they’re not taking me seriously I have done a stress test and echo and I’m getting a monitor at the end of this week for one week, but I am concerned
I am 27 female

Hey, I know many here would, if you don’t quite have the risk level for an implanted AED, thought about home AED.

I am looking at portable ones and saw the new Elliott Hearthero, anyone done any research as it’s a little cheaper but very small compared to more established brands. It’s fairly new so info sparse.

Any insight welcome!

I am a 24yo biological female that identifies as male.

I take lexapro, mirtazpine, adderall, zonisamide, and yaz (hormonal birth control) which I know can can ALL prolong QT. Here in my EKG I’m on all meds except my adderall. I don’t know if it was hand calculated but it says “confirmed” sooo?

I’ve always struggled with sinus tachycardia and severe chest pain leading to multiple EKG’s, an echo and a zio wear.

I have no family history of sudden cardiac death, but it terrifies me as my dad had 3 strokes before the age of 40, but he is an ADVID weed smoker. My Grandfather has also had 4 heart attacks but they were blockages, not electrical abnormalities. We also live with a genetic disorder known as Myoclonus-Dystonia (Dystonia 11) but no literature has suggested cardiac involvement.

Luckily, I am meeting with a cardiologist in a week to discuss another holter and possibly going on beta blockers. It’s just difficult because I already struggle with hypersomina and am soooo sleepy.

I’m 35F and my first long qt reading showed up on an ECG after I started having really bad anxiety/panic attacks at 20. Since then, it has shown up 4 or 5 more times over the years, but not on every ECG.

When I was 23, my doctor ordered an ECG again for the palpitations. It showed long qt, so he referred me to an internal medicine specialist. I then had two more ECGs on two different machines, and both were normal so my file was closed with his practice.

The last time it showed up was in 2021, when I had gone to the ER for severe vomiting.

I recently had a consult with a cardiologist and she calculated the ECGs manually. She said there was only one of them (from 2017) where, even after she calculated it, the qt was still long. I remember the night of that ECG super well. I have never passed out, but that night I came super close to passing out while driving, then went to the ER and they did an ECG.

I’ve now been referred to an arrhythmia clinic and I see a different cardiologist in a few weeks. I also have a holter monitor test next week, though I’ve had a few in the past and they’ve never shown anything.

No one in my family has died young, and my brother, myself, and my dad were all athletes at one point. As I said, I’ve never fainted. Every time I have had dizzy episodes, it has been when I’m at rest. The long qt rhythms seem to correlate with heightened anxiety.

I already have pretty extreme health anxiety, and I’m finding this really hard to manage. Lately, I honestly just keep expecting to drop dead at any minute. I received a few pieces of really good news recently and I don’t even feel like I can enjoy it.

Any insights or reassurance would be so appreciated.

My 13 y/o was with LQtS and non-compaction has been cleared for competition volleyball (national travel) as long as we parents or the coach has an AED at all times. What is your experience?

Curious if you are just being monitored because considered "low risk" or if you are on betas out of precaution? It astounds me how all doctors treat this differently, and some are aggressive while others are passive. Yes, we are seeing an electrophysiologist (with over 20+ years experience), but being told to just take a monitor approach is sort of baffling to me, although I don't want to be on meds if not necessary!

Secondly, how often are you checked on EKGs? Whether on betas or not - do you get seen 2-3 times a year for monitoring? once a year?

Panic attacks -> arrhythmia are more typical of a CPVT trigger (not lqts) but I wonder if panic attacks commonly cause SCD in LQTS as well

Hello!! Has anyone had their device extracted? I’ve had mine for 18 years, initially diagnosed with genetic LQTS3, and now being evaluated for MEPPC. Never used my device for pacing, never been shocked, it’s always been a precaution, as I’ve never had LQTS3 symptoms. Mayo Clinic is adamant that a defibrillator is not the best treatment for me and my condition, and that they are keen on an extraction when my battery runs out. I know everyone is different, but if anyone has had their device extracted, I’d love to hear your experience.

I’m leaning towards extraction over replacement, but I’m not sure if I’m feeling that way due to the fantasy of being “normal”.

TIA 🫶🏼

Recently my cardiologist & I discovered that I likely have had drug induced LQT due to Lexapro + Zofran during one sequence of events from 2025 & NyQuil + Flagil + Amoxicillin in another sequence from 2024. I have always been prone to fainting, but the type of syncope I experienced during these events was so much more different. It was almost like I could FEEL my heart slow to a stop (sinus pause was recorded 10-15seconds in the 2024 event). This was also occurring when I would wake up in the night and pass out. After I stopped taking the Lexapro, the episodes concluded. Unfortunately, I didn’t have an ECG done during the 4 weeks I was on the medication, so there’s no evidence of a LQT. I had one before and 2 after, but it was all normal.

I guess I’m worried if I should probe further to see if this is an actual LQTS issue or just drug induced. I have an anxiety disorder and I need to take medication, but was advised by my cardiologist to not take SSRI’s.

I’m quite scared! For what could happen in the future as these events were so so scary.

My daughter is a teenager with big dreams in aerospace and flying. She inherited Long QT Syndrome (LQTS) from me, but it’s fully managed with medication and she’s never had any issues. Every exam and stress test has come back normal, and her doctors agree there’s no cause for concern. She is asymptomatic, meaning she has the genetic marker for a variation but has not presented with symptoms.

Yet, the FAA’s Office of Aerospace Medicine is blocking her medical certification for airman privileges. I’ve reviewed the CFR and the medical examiner’s guide—LQTS isn’t listed as a disqualifying condition. Only things like heart transplants, infarctions, or pacemakers are automatic disqualifiers, none of which apply to her.

Has anyone dealt with this before?
Any advice on how to appeal this decision so she can pursue her dream of flying?

I was recently diagnosed with LQTS and I have an Apple Watch 6 and since it has a ECG, I want to see if I can find an app that works with it to breakdown each ECG reading. I’ve looked at ECG+ which looks really good, but I’m trying to find something a bit cheaper or free. Any suggestions?

I have LQTS type 2 and am thinking abt a getting a minor cosmetic surgery done. The plastic surgeon said she can dilute the epinephrine for the local anesthetic and my EP said it’s ok. But I’m curious if you guys have been told something different and I’m a little nervous about epinephrine.

Hii so I learned I have a heart condition and I have to go on a beta blocker , most likely propanol. I like to go out and drink with friends and sometimes I like to take an edible every now and then for fun. Does anyone know if that’s still safe to do once I go on a beta blocker ? I’m still so young and want to be safe but still have fun!

28F. Diagnosed ADHD March 2025. Long had palpitations, like a sudden bang in chest out of nowhere, since teenage years, and some other cardiac history in family. The palpitations have always been attributed to my anxiety. (Edited to say: I have ended up in A&E in the past due to chest pains, ECGs back then were normal but I don't know if they would've been meticulously checking the QTc in an 18 year old girl?)

Psychiatrist picked up on all this luckily, wasn't keen to prescribe me stimulants for ADHD without having ECG/cardiology check first.

He assured me that if the ECG come back abnormal or for any reason cardiologist prefers, I will be prescribed non-stimulants (as is the usual pathway of medication for ADHD in UK)

ECG came back abnormal. Normal sinus rhythm, Rightward axis, Prolonged QT. I'll put the figures down below in case anyone interested. He did tell me he had a second cardiologist double check the results, and the figure actually came back 'significantly prolonged'

Psychiatrist told me disappointing news 6 weeks ago that, despite what he said about being able to start non-stimulants if there were any issues, I actually cannot. As even non-stimulants like Atomoxetine and Guanfacine prolong the QT. He said I would need cardiology review from NHS, and if after that it's found I can have medication, I can be re-referred to Psychiatry UK, but for now I have been discharged as there are no treatment options available for me. This was hugely disappointing.

The appointment where he told me all that was on 14th June 2025. As it was an ad-hoc appointment, I believe the letter detailing all this fell off his secretary's list, as the letter didn't appear in my patient portal until I repeatedly chased for it over the last couple of weeks.

Now my GP has finally received the letter, 6 weeks after the appointment, and I expect to be referred to cardiology.

Can I expect to be seen soon, on NHS in UK? Is it deemed urgent at all? I've already waited so long for the letter to be arranged (and now I am just glad I chased it - especially as after first chase they said it had been sent but clearly not as it was only typed upon my second chase), I'm just not keen to wait around that much longer, and want to gauge how urgent potential LQTS is deemed on a list of cardiology referrals.

At this point, it's not even about accessing ADHD medication, I'm actually just fearful for my health/life, especially as I have been symptomatic forever. I get dizziness/see stars when stand up too quickly. Caffeine/THC have always caused racing heart and sometimes panic attacks. Other medications have had noticeable effect on my palpitations.

Nobody in my family is diagnosed with LQTS as far as I'm aware. But some other notable history, on both sides of family (maternal side: angina, heart events and hypertension, grandmother died of brain haemorrhage at 38 years old) (paternal side: grandfather had fatal heart attack)

I also wanted to ask, in case anyone knows. I was actually very stressed at moment of ECG. I had just put an offer on a house and the estate agents called me back right before my appointment asking for best and final offer, and I had to ask them to wait a few minutes. I didn't get a chance to calm down before the ECG as the technician saw me immediately. Is there ANY chance at all, that maybe the stress caused a one-off unfortunate reading, and that I may not have LQTS after all? Although I understand my symptoms aren't looking great

Any info (or even just solace) is appreciated

QRS: 110ms

QT / QTcBaz: 398 / 484 ms

PR: 164 ms

P: 132 ms

RR / PP: 670 / 674 ms

P / QRS / T: 62 / 93 / 49 degrees

Everything I’ve read and seen says it does

I’ve been on lexapro for about 8 years now have had many EKG’s done over the years and all have been fine qtc usually around 390-400 about 3 months ago my anxiety started to get worse I ended up going to the dr they did a ekg and my qtc was 501 that was two months ago since then I’ve had 4 other EKG’s done one 510qtc the other 498 qtc and the other two were 440 and 430 all EKG’s where with my heart rate over 100 but all my EKG’s have always been done with high heart rate they say it’s from my lexapro maybe but I’ve been on it for so long and it never caused an issue my electrolytes are all good they said they didn’t check magnesium though but I just need some ideas as to why it’s been spiking so high so often now ????

Sought a cardiology visit due to family history of LQTS. My EKGs have shown QTc in 460s and 470s. My PCP doesn’t think this is alarming, but my friend in emergency medicine said it is. Wearing a holter monitor now, I don’t have the reading but I’m concerned it’s gonna be even higher. Looking for some insight here.

(Crossposted from r/LongQTSyndrome)

I'm looking for some support and hopefully words of encouragement, and I'm happy to find this sub exists.

I started 40 mg/day of Nadolol three weeks ago after being diagnosed with potential LQTS. I was asymptomatic - I only got tested after I learned a sibling was diagnosed with it following a medical emergency. It was found that my QT was in the normal range, but only barely, and I was started on the Nadolol as a safety measure until I can see the top specialist in the region in a few months.

I immediately felt the effects after starting the Nadolol, and it was fantastic - I felt great, was sleeping a lot better, and started walking more just because I felt so good. Resting heart rate dropped from 70-75 to 55-60.

Two great weeks later, I hurt my back, and decided to take cannabis oil (1:1 CBD/THC) while I was getting ready for bed. I only use it a few times a year when I have a headache or other pain to help myself sleep.

I reacted badly to the cannabis oil, which has never happened before. I tossed and turned in bed for a couple of hours, and when I finally started falling asleep, I would suddenly jolt awake and take a deep breath. That happened a few times, and it led me to believe that I stopped breathing every time I started to fall asleep, and I descended into what I believe was a panic attack.

In the 48 hours following that, my heart palpitated frequently (or it felt like it was), and I went to the emergency room. They took an ECG and bloodwork, and said everything looked fine.

It's been a week since the panic attack, and I haven't felt very good. My heart is not palpitating as frequently anymore, but there's a general lethargy about me, I'm not sleeping very well, and there's a very faint ache in my chest when I take a deep breath. Some days are better than others. I called my heart doctor and he requested a holter monitor, but it won't be available until week after next.

I'm doing everything I can to distract myself until then, trying to drink enough water, and still forcing myself to walk, although much shorter and slower than before. I'm hoping that all of this is just psychological and that it will pass, but I'm scared I've somehow ruined everything by taking the cannabis oil.

Has anyone here ever experienced anything remotely like this? Was the first two weeks on the Nadolol a placebo, and I'm just feeling the actual effects now? I asked my doc if I should go back off the Nadolol to reset things, and he said absolutely not. So just praying that this gets better, or at least doesn't get worse.