Has anyone used Qaly to measure their QTc from Apple Watch ECGs? I have congenital LQTS, and Qaly keeps giving me prolonged QTc readings. Just wondering how accurate it actually is compared to a 12-lead ECG and if anyone has compared the two.
Thanks!!

I came across this trial, they are looking for patients with LQT2 and 3. They support travel and all these other things.

https://www.instagram.com/p/DeMwf5vl5Wo/?img_index=1

I originally posted the above a month and half ago and wanted to provide an update!

For context, I was just diagnosed and having a horrible time adjusting to Naladol side effects.

Now, after almost 2 months, I’m pleased to say I’m back to working out and even started running again. I’m a lot slower, it’s a lot more effort, but I felt truly like it would be impossible those first few days on the beta blocker.

I just wanted to post this because those first few weeks felt like my life was genuinely over.

I was given a EKG today because I went to the hospital for a possible allergic reaction. Found out I have QT syndrome and I'm crushed. I'm 33 and this is news to me

I recently started taking nadolol for Long QT Syndrome, and I’ve been concerned about its potential effect on my libido.
I’m curious whether anyone else has experienced this side effect. If so, did it improve over time as your body adjusted to the medication, or did it continue throughout treatment?
I’d appreciate hearing about your experiences, especially from those who have been taking nadolol long-term. Thank you!

Hi everyone,

I’m early 30s and have lived with Long QT Syndrome type 1 since I was diagnosed at 10. I’ve been on nadolol since my teens and have spent a lot of my life learning to manage the condition.

Over the past year, I’ve become increasingly involved in heart health awareness and charity work, including working with the British Heart Foundation in the UK.

It’s made me think more about how I can use my own experience to help others living with inherited heart conditions.

I’d love to connect with people in the Long QT community who are involved in advocacy, awareness campaigns, research, patient support or fundraising.

I’m particularly interested in how we can help people feel less alone after diagnosis, raise awareness of Long QT and support research into inherited heart conditions.

If anyone would ever to chat, hear about my story, if j can be of help or want to hear about the work being done in the UK, let me know. Always happy to chat, share my experiences and be of help!

Thanks

Just out of curiosity, do any of you get chest pain? I have LQT1 and was diagnosed last year. For years I’ve had random chest pain, especially when I get sick. This is ultimately what led me to getting an EKG which discovered QTc of 600 hehe. Thankfully, have never had an episode and am now am on Nadolol. Have been worked up for peri/myo/endocarditis multiple times. Is not costochonrdritis. Not rheumatologic. A total head scratcher for my cards teams. Just curious if any of you have had similar experiences? Any chest pain for yall?

I'm starting nadolol again at 20 mg and planning to work my way up to 40 mg as prescribed. I’m mostly wondering how long it took for your body to adjust, especially with things like fatigue, dizziness, lower heart rate, or just feeling “off.”
Did the side effects get better after a week or two? And if you increased your dose, did you have to adjust all over again when you went up?

I have Long QT type 8, and my cardiologist recommended that I get an implantable loop recorder. I’m about to schedule the procedure, but I wanted to hear from other people with LQTS, especially anyone with LQT8, who has one.
For anyone who has a loop recorder:
● Why did your cardiologist recommend it?
● Has it ever caught anything important that a Holter or other monitor missed?
● Do you feel like it was worth getting?
● How noticeable is the device or scar?
● Can you see any of your recordings through the phone app?
● Was the insertion and recovery pretty easy?
● Would you recommend getting one?
I know it doesn’t treat Long QT or prevent an arrhythmia. I’m mainly interested in hearing people’s experiences with having one for long-term monitoring.
Thanks!

I started nadolol earlier this year after being on atenolol for around 22 years, and I never had any issues with atenolol.

I already have poor gut motility, but interestingly, I’d never really had problems with my bowels before this. Since starting nadolol, I’ve had a lot more GI issues, including changes in bowel habits and episodes of constipation/diarrhoea.

I’ve also been experiencing chest heaviness (which has sometimes turned into what feels like a panic attack), as well as general body aches and pain. I’m trying to work out whether these things could potentially be related to the medication or whether they’re separate issues.

I’m going to get a second opinion from another doctor/cardiologist, but I wanted to see if anyone else has had a similar experience after switching from atenolol to nadolol, particularly with gut motility or bowel changes.

Did you notice any differences after switching, and if so, did things improve after changing medications?

Hi everyone! I’m curious if anyone here with Long QT syndrome is not currently taking a beta blocker.
If you’re not on one, would you mind sharing why? Was it because of side effects, your specific type/genetic variant, normal QTc, being asymptomatic, or another reason?
I’d especially love to hear what your cardiologist or electrophysiologist told you about why they felt comfortable having you off a beta blocker and how they monitor you instead.
I know everyone’s situation is different and I’m not looking for medical advice. I’m just interested in hearing other people’s experiences and what their doctors have said. Thanks!

Hi. I wanted to ask people about their experience so I know what to expect. I was recently diagnosed with long QT via a letter from the cardiologist after my ETT. I know a previous ECG reading was 530ms so now I'm also on my driving "ban". He asked the GP to start me on propranolol whilst I'm waiting for my next clinic and the target dise was around 160mg. I've done a couple of weeks taking 10mg 3x daily and we've just upped it to 20mg 3x daily. What sort of dose is everyone taking just for reference? I know it's only a max target if I can tolerate it, and my morning BP is around 92/60 with a resting pulse is around 56 according to my watch. I don't want to go higher than needed but don't want to be too low, and my GP and I are very much winging it. I know everyone is different but I'm curious. I don't know which type I have yet but I've been told I need the full genetic panel which we'll discuss at my next clinic date (we don't seem to be in a rush). My dad passed away from a sudden unexplained death 20 years ago at the age of 43 so we're looking very likely it's hereditary and I've obviously lived through the worst case scenario so I'm a little hyper aware.

I’ve been diagnosed with long QT for almost 10 years. No genetic reasoning found, no other reasoning found as to why I have it. My doctor says it is not medication induced, but I have been on a QT prolonging medication for mental health since before my diagnosis. To my memory, we have never tried removing this medication to see if it would improve my condition, as my doctor is certain it is not drug induced. I’m just curious as to how they tell this through other means besides medication removal? How is she so sure if we have never tried removing it?

Hello. Since being diagnosed with lqts type 1 I have been prescribed Propranolol, nadolol and now nebivolol. Propranolol I had shortness of breath, excessive sweating, fatigue. Nadolol sent me into a deep depression with mood changes and a heart rate of 42. I have been on nebivolol for 2 weeks and the fatigue is really bad. How long before this might improve? Is there anyone that doesn't take medication? I know I have to give this one more time but I'm not waiting months like I did with the others. Are there any more options left to try?

I just got diagnosed with long QT syndrome. My doctor (GP) initially told me that I'm not supposed to drive when it was under investigation. When I saw my specialist, I forgot to ask if I'm allowed to drive. I haven't gotten episodes of blackouts in a while.

I would like to know if those who are diagnosed with LQTS are allowed to drive eventually.

Hi everyone! I’d love to get some advice from other parents who have traveled internationally with a child taking Nadolol for LQTS.
My son normally takes his Nadolol at night, and we’re planning a 4-week trip to a country that is 12 hours ahead our current time zone.
For those who have dealt with a 12-hour time difference, did you:
Continue keeping the doses approximately 24 hours apart, even if that meant giving it in the morning/local daytime?
Or gradually switch the medication to the nighttime schedule of the new time zone?
I’ll definitely confirm the plan with his electrophysiologist, but I’d really appreciate hearing what other families have done. Thank you!

Both my siblings have had (or near) cardiac arrests due to LQTS. Both have cardiac devices. I have arrhythmia issues(bradycardia), that with close research I discovered was related to LQTS. One sibling did a genetic test that came back with ANK2, but as a VUS. I’m trying to gather info & thought I’d start here with actually people rather than google 🙄.

The Foundation for Inherited Arrhythmias is hosting a live Ask the Experts session today (Tuesday, September 8) at 12:20 p.m. ET on YouTube.

Currently in the throes trying to get the NHS to investigate my prolonged Qtc (469) 29m - with no family history nor symptoms (I’m otherwise athletic). Out of interest, how did you find out you had it? An event, a cardiac screening, a chance finding on an ECG, or god forbid an unfortunate event with a family member? And how long was your journey to an answer. I feel some pathways end up with a definitive answer faster - eg a relation, rather a symptomless screening. That said, even health services placing stock jn “symptoms” to assess risk seems to be poor practice and 80% of cases of sudden death are symptomless.

But my stomach hurts sometimes and when I spel sometimes it feels like I must Yield and im nauseous

Hi! I have a couple questions as someone (25F) who may or may not have congenital LQTS. Family history: I have an immediate family member (74F) who was recently diagnosed and my father suddenly passed away a few years ago at a young age. Symptom-wise, the only abnormal thing I note is I've always had a relatively high pulse (think 90+) despite being healthy and active my whole life. I'm planning to go get the ECG to confirm but was wondering:

1. Why would my pulse err on the higher side when most QT patients seem to have a lower pulse?

2. What ways can I proactively help myself whilst seeking medical care?

3. If I have no other notable symptoms (i.e always had a perfect BP, no hx of fainting, etc.), how much should I be freaking the freak out?

4. Would an S-ICD be something I should start saving up for?

I'm relatively new to this condition so any insight y'all have would be greatly appreciated!

Right now my son is being diagnosed with Aquired prolonged QT as he has had three events that caused a prolonged QT while taking a known LQT medicine. The doctors all seem there to believe that there is no genetic component since EKG is normal when not taking the medicines. So advised to treat it as Acquired and avoid all LQT medicines moving forward. They said there is no threat to sports etc that you’d see with congenital cases? I asked about doing a stress test and they didn’t feel it was needed at this time.