Long QT Syndrome: Want to connect with others

HI, @longqtsyndrome - welcome to Mayo Clinic Connect. I've moved your post here to an existing discussion of Long QT syndrome so that you can talk with others who may have similar experiences and concerns.

Please meet @ramakambhatla @janet26 @lynnw @cheymallery @penn1023 and others. Hoping they can tell you about the type of Long QT they have and what treatments they have done thus far.

I'm supposing from your username that you may have been diagnosed with Long QT syndrome? If so, what type do you have, and what treatment have you undergone so far, @longqtsyndrome?

So far I have had no treatment. I reduced the QT prolongation by decreasing my antidepressant. I did not feel the doctor was very concerned at all. I am really not sure where to go with this. I am not sure if it was considered just a side effect and all is good, or if I should always be aware I am prone to this and be very cautious with all meds. No follow up has been planned. I did not know there were different types.

I just had DNA testing by Invitae for LQT and 77 other cardiac genes. It came out negative but only 80% of genes are identified. I show prolonged QT on EKG. So either I have an undiscovered gene or it’s prolonged for another reason. I will continue to avoid QT prolonging drugs.

I agree! Dr Ackerman is first class in knowledge and approach to care. He diagnosed my Long QT in 2009.

Hello@Lisa Lucier, I had prolonged QT-interval, it is drug-related, while on Cardarone (100mg on alternate days) with only asymptomatic bradycardia, for 4-5 years. Recently, it has been stopped. My indication was multiple PVCs on EKG. The there is no ventricular atypia,
and HR/PR=50-60/min. I am also on Carvedilol 10mg, for stabilizing BP, at 140/70, so bradycardia is continuing(for 2 years).Thanks for
an interesting post.

Hi @lilkeilty07,

Welcome to Connect, and thanks so much for sharing your story. Kudos to you for being in recovery; I'm certain it has taken tremendous strength and determination.

Here is some information about Long QT syndrome (LQTS) from Mayo Clinic: http://www.mayoclinic.org/diseases-conditions/long-qt-syndrome/home/ovc-20340773

I’m tagging fellow Connect members @sharlynn62 @sheilajean @lorrainechavez @medpup1 @manysilver who have discussed amphetamines. I hope they might share their knowledge and experiences with you.

@incrediblemulk98 has written about the use of hydrocodone and heart issues in this discussion, "False positive on EKG" https://connect.mayoclinic.org/discussion/false-positive-on-ekg/, and I would also like to invite Connect Mentors @johnbishop and @predictable to join this conversation, as they may be able to offer some insight.

@lilkeilty07, have you consulted with a cardiologist?

Hello, I am new to this discussion forum but was wondering if anyone out there could help me answer this question. I am currently in recovery of an opiate addiction. In November it will be one year of being sober from OPIATES, but sadly I had a slip up on crack cocaine in December and January. I am currently in a clinic that monitors my hear by EKG as a part of their treatment program. I requested two EKG's during the time period of that slip up, and when I did I couldn't believe the results...I have a serious history of a very high level of QT, my number got up to 514 steady. That is very deadly. For years it hovered around 480-514, but when these two EKG results came in my QT dropped TREMENDOUSLY, it went all the way down to 382....that is extremely rare for me. Thinking it was just something happening at that moment, I had a second one done, another really low score of 380....That was done in December and January. On August 22 of this year I had another EKG done, being sober from EVERYTHING and not being on any other medication that would increase my QT level., It went Way up to 450...now I am wondering...is there any significant proof that amphetamine use can decrease your QT level??? Obviously I am not just gonna go out and use because it may be the case, I am in recovery and have a very stable life and plan on keeping it that way. I just want to know if that can be true? is there anyone out there that has experienced something similar, and if so, can you please help me explain this weird occurrence. Thanks!

Hello to Everyone in this discussion about Long QT Syndrome. I would like to post a link to a recent Mayo Radio broadcast about Long QT Syndrome with Michael Ackerman, M.D., a Mayo Clinic cardiologist.

Thanks for sharing this @hopeful33250. Dr. Ackerman was our daughter's doctor who diagnosed her Long QT Syndrome. As she says - he's fantastic! He helped her through a myriad of treatments until she found what worked best for her. She started with beta blockers which had some side effects on her, then to a subcutaneous defibrillator (S-ICD) and now has a pacemaker which has worked best with her active lifestyle.

@johnbishop Thanks for the great information about Dr. Ackerman and your daughter's treatments. I'm glad that she found Dr. Ackerman and that he was so helpful to her.