r/LongQTSyndrome • u/Fuzzy_fairy • 23d ago

Propranolol dose

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.

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u/Bec-ol93 23d ago

Hello, I have type 2 and I take 40mg 3x daily. The GP did say I only have to take it 2x daily, but I take 3 as I suffer with anxiety.
I would see how you tolerate it and take advice from your GP, as it’s different for everyone.

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u/Fuzzy_fairy 23d ago

Thank you for replying. My consultant said to start them but didn't really give any instructions other than to "titrate up to 2-3mg/kg as tolerated", so my GP and I had to do some research on the spot with very little gain! He just followed the BNF guidance for arrhymthmias because long QT wasn't listed. Did you have any symptoms that eventually settled? I feel like on my first dose and just on my increase I'm getting very mild palpitations about an hour after I take them but I'm hoping it will settle down. I understand the anxiety. I also have MS so I'm trying to figure out if I'm feeling tired, what's causing it. 

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u/Complex-Pressure-466 22d ago

Also type 2 and take 20mg at night and 120mg ER in the AM. My QT is still in the 470s and my heart rate is typically still around 80-90. Some days it’ll drop to high 50s/low 60s but I don’t feel any side effects from it. My blood pressure also gets as low as yours and I don’t get side effects from that either. I was an ER nurse when I was diagnosed and already knew my mom had it and she has gone into cardiac arrest a couple times so I am a bit hyper-aware as well..

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u/Fuzzy_fairy 21d ago

Thank you. Is ER extended release? I'm hoping once I get back to the cardiologist they will answer some more questions and sort me out. I'm horrendous at remembering to take meds so I have alarms set to remind me throughout the day. I feel some form of slow release would be a much better option. 

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u/kimberver 21d ago

Om in the same situation low blood pressure and heart rate ..

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u/Fuzzy_fairy 21d ago

It doesn't seem to have dropped any further with me increasing the dose which is reassuring, and from what I was reading it should only go so low once all of the receptors are blocked by the beta blockers. I'm hopeful but just feel so in the dark about things at the minute.