Anyone else living with Long QT Syndrome?

[SallyBarnsley]

I was recently diagnosed with LQTS. Would like to connect with others living with this. Plesse feel free to msg x

[Palpman]

I'm borderline at 470ms. How long is yours? I have done a lot of research into LQTS and know enough not to worry.

There are 2 types. Congenital and acquired. I have the acquired caused by Flecainide together with Sertraline.

I have stopped the Sertraline but due to the outbreak of Covid I have not had it checked.

[SallyBarnsley in reply to Palpman]

HiMine was 520 when measured after my cardiac arrest (I was out for 5 minutes but lucky to be in a public place with a defibrillator). Ok have the inherited type, as confirmed by genetic blood tests. I have had an ICD fitted. Mostly I am ok but the beta blockers make me feel sluggish & dizzy.

So are you being monitored or treated? I’ve read about certain medications prolonging the QT.

[Palpman in reply to SallyBarnsley]

Yes. All antidepressants and antiarrhythmic drugs prolong QT. Not by much by themselves but never take both. I have read that beta blockers are given to patients but my heart rate is too low being in the forties. There is a small op that severs something in the breastbone that can help. Otherwise a defibrillator is the only option.

Most people that get very long QT have been suicidal patients in a hospital setting normally using the above drugs. Readings of over 650ms tends to precipitate TdP or VT and defibrillators need to be used.

Stay safe.

[Jeekee9]

Hi Sally, it has been 2 years since you posted, but hopefully you or someone may benefit from my response. I was just diagnosed this August of 2022 with Long QT Syndrome, (LQTS). What a nightmare! I thought I may not make it. Mine presented itself while in the ER after going into AFIB and receiving IV doses of Metoprolol to lower my heart rate. They tell me it was most likely the beta blocker that caused the LQTS. My reading was 549. I ended up with a pacemaker several days later and I continue to take Metoprolol and Eliquis daily to prevent further arrythmias and stroke. I would also like to connect with others that share this diagnosis.