MarthaE
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MarthaE, March 29,  2021  10:02am EST

Tikosyn

Hi, I am going to be admitted in couple weeks to start Tikosyn and kinda nervous about the med.  I have had four cardio versions and two ablutions and still in and out of a fib and flutter.   What is anyone's experience with this med and what to expect with my three day stay.  
thank you

3 Replies
  • AHAModerator
    AHAModerator, March 29,  2021  5:11pm EST

    Good afternoon,

    Thank you for participating in the MyAFibExperience community. I'm sorry to hear that you're feeling nervous, but please know that you are not alone in this experience. As you wait to hear from others about their experiences, I can share some AFib resources for you to check out in the meantime.

    Please keep us updated on how you're doing.

    Best,

    The AHA Team

  • Thumper2
    Thumper2, March 30,  2021  8:33am EST

    MarthaE, I hope that Tikosyn will "work" for you.  It works for my husband, but did not work for me.  The hospital stay is not difficult, however.  Take some reading material with you.  Basically you take some Tikosyn and then every few hours the nurses come and take your blood pressure, etc., etc.   They do this 24-hours a day, which means that it's hard to get a good night's sleep!   But other than that, it's no strain.  Please let us know how your experience goes.

    As for still having AFib after two ablations, you might consider consulting with a different electrophysiologist (EP), to see if a different type of ablation might be called for.  Some of us here have had 2 or 3 ablations before reaching NSR.  Keep us posted!

    Thumper2 (Judy)

  • grandscheme
    grandscheme, April 7,  2021  11:31am EST

    Good morning Martha E.

    Best of good fortune with your hospital trial with tikosyn (by "trial" I mean trying it out!) Good for you.

    I was at Beth Israel in January 2020 for the same opportunity and lolled around or stroleld around hooked up to heart monitors (painless) while I was watched to see that the drug interaction was right for me. It was!!!! Tikosyn is available as a generic called dofetilide, copy of the active drug in a brand-name medication. I am on dofetilide, but they're the same. 

    Every single day since I have thanked the universe for what turned out to be a perfect match for me. It is not for everyone. It is for me.

    Obviously from the date I mention I got in just under the wire before the pandemic (and would never have been lucky enough to land a hospital bed for three days had I declined at that point.) There were no issues in the hospital except for a tight range of dinner choices (smile). I went home and the many, many annual episodes of afib which had started to impair my emotional life, were stopped. In the months since I have had three episodes, two each for eight hours, and one for a few minutes. That's in 14-15 months!!! 

    I have no side effects -- my heart sounds strong when my doctor listens, and whatever happens in the future I am so grateful for getting through the past few isolated bleak months almost free of Afib. For me, the hospital stay was more tedious than anything else. My daughter and son-in-law live in Boston so they visited me (I live in RI).

    Everyone on this site tries what they can, we're all different. But you asked and for one person, me, life has changed completely for the better. Enjoy your hospital vacation. Bring a good book, prepare to nap and / or watch some bad TV.🌷

     

     

     

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