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Does anyone else have Long QT Syndrome?
I have a heart rhythm issue called Long QT Syndrome. I don’t know anyone else with this condition and just want to put out some feelers on Mayo Connect to see if there are any others dealing with this disorder. I’m part of a research study at the University of Rochester in New York that is researching LQTS and will hopefully help discover ways to make this condition more manageable in the future. So, where are my fellow LQTSers at?
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Hello! I also have Long QT Syndrome. I was diagnosed in 2017 and had a defibrillator implanted.
Feel free to ask me anything, I am happy to help a fellow Long QT Syndrome heart buddy. ❤️
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2 ReactionsHi @smazz6! Thanks so much for responding! It’s nice to have a LQTS buddy finally.
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2 ReactionsWelcome @smazz6, Happy to see that you have connected with another fellow Long QT Syndrome patient @meredithes. There is an older discussion that I'm sure some of the members are still active on Connect that you might want to scan through. If you want to see if a member is still active, just click on the profile to the left of their post and it shows the last time they were active on Connect.
-- Long QT Syndrome: Want to connect with others: https://connect.mayoclinic.org/discussion/long-qt-syndrome/
A search of Connect also lists the Mayo Clinic Newsfeed Posts which has quite a few on the Long QT topic - https://connect.mayoclinic.org/search/newsfeedposts/,
Thank you John. I am so sorry, I did not look at date to realize that the post was a few years old.
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1 Reaction@johnbishop thank you so much!
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1 Reaction@smazz6
I was diagnosed 17 years ago and I've refused to get a defibrillator or pacemaker because I have reason to believe I might ve allergic to the metal. I've managed on propranolol 60 mg er all this time until my cardiologist recently let me change to nadalol due to very low blood pressure and heart rate (into the 30s). Nadalol has allowed me to have more normal readings, 40s and 50s. But my main question is regarding allergic reactions to a device or lead into my heart needing to be removed. I just can't imagine having go through that. So far, I'm doing okay with the meds. Any insight on allergy to metals is appreciated.
@smazz6 , I was diagnosed at 22 because I had 3 cardiac arrests back to back in the same evening. I nearly missed losing my life so I had no choice about getting a defibrillator. Fortunately, it turned out that I’m not allergic to metal like you are.
I did have to have a lead wire removed and replaced because it was recalled by the Medtronic so that was very stupid, but I’ve had no other serious issues with mine and know I need it to continue to survive safely since my heart is weaker from the arrests.
Consult with your physician as much as possible about your metal allergy concerns. Maybe there’s some kind of allergy test that can be done to see if you have a reaction before something is surgically implanted that may make you sick.
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3 ReactionsI was diagnosed with genetic long QT last year, and wondering about meds for treating the condition.
@ebgwbg8 from what I understand, there are two types of Long QT. One can be treated with medication only so you'll need to consult with your cardiologist about that. The type I have requires an ICD implant and I take a beta blocker called Metoprolol to help keep my heart rhythm in check.
@meredithes
Thank you.