I have long QT: can you suggest alternative to Flecainide ?

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Have been on Flecainide for over 10 years (for rate & rhythm control of AF). I get bouts of tachycardia & sometimes revert into AF, even when on Flecainide. Recent ECGs show a prolongued Q-Tc: possibly caused by Flecainide & may worsen over time. Can anyone suggest an alternative drug ? I do not do well on Beta-Blockers: they make me permanently exhausted. Amiodarone is also not for me (I was on it for about 3 years) & it probably caused the initial LQTS. With thanks, & hope.

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  • Posted

    Hi Zena 2016

    I feel where your Coming from

    Ive been taking amiodarone for years

    It was just fine. And. GP gave me flecainide as a just in case drug if i had an erratic. Heartbeat emergency. Which i never taken through the course of my being under amiodarone

    Till last 2 months ago. When al of a sudden. Amiodarone turned for the worst. I mean instead of keeping the rythym. It went berzerk. I went to my Dr. Again and he prescribed me to take flecainide 200mgs 3 times daily. Taken with atenolol 5mgs. As soon as i took my first flecainide meds. My corazon went into berzerk mode again. So i took my atenolol thinking it would stop my arythmia episode.lucky me it made things much more worst. I was panicky. So i went to the hospital and they administered me with valium. The early following day. I saw my Dr. Kina p*ssed off deep within. Thinking if i should my Dr.so he prescribed me with bisoprolol 2.5 mgs twice a day i said to him why this? I am presently taking atenolol? Is this the same generic with the one im presently taking atenolol? He kindly replied

    Your heart is no longer Responding to amiodarone, rythmol, atenolol, better yet flecainide. To cut the story short i had no choice but to take the meds i gave me. And to my amazement. I could not believe myself. Low dose of bisoprolol 2.5 twice a day.did the job. Besides being cheap. It really helped me my life back. I can Do my usual routine ."of course all in moderation" even if its just 80% normal. This is better far off then i was a couple of months back. I just hope this meds.im taking will work for me. My point here Zena is there is a suitable regiment of drugs available

    Its just picking the right one. Ive lost all hope. Untill the ones im taking unbelievably worked out for me.im perplexed. Dont lose hope ask your Dr. About exploring another drug that could work for you. Besides beta blockers. Or beta blockers that would work out for you. There are lots of us here sharing the same fates and ordeals. Keep the faith and hold on.... Thats the best we can do as for now

    neen having irregular heartbeats since i was 21yrs old

    They come and go thw 1st time i had it the 1st dr

    Gave me inderal i think it was 10 mgs. It stopped until when i was 35 yrs old i was fine through the period until i had another. Issue with my arythmia. My 2nd dr. Gave me cordarone 200mgs 3× daily for 1week then 1daily with atenolol 2mg.half tablet Once a day. I was to take cordarone for 5 months as to not affect my thyroid. Then i was fine. For the time being. Until lately around last. March. I has another episode.i had me checked up with my new dr. He gave cordarone again with atenolol. But this time when i took the cordarone

    My heartbeat went berserk

    I was so scared i went back to see my dr

    After 3 days. He changedy. meds to rythma 200mgs. And gave me tambocor. 100 mgs as necessary if all else fails with my arythmia session. To no effect

    I took rythmia and tambocor

    I could not bear the erratic beating

    So i went back again to my cardio dr. Told me to stop taking the meds amd instead gave me concore 2.5mgs cut into halves twice a day. Im a m my episodes lessened but was still there. So i went back again to my dr. He increased it to 2.5 mgs twice a day. It lessened. My problem is i exert some efforts then i feel having arythmias

    Then i have to rest. I last saw my dr. This august. I asked him if i had to have ablation, pacmakers etc. He told me no need for that

    He gave me. Tripgen Its like valium. So i won't stress to much on my ordeals. He told me 1 in 100 people suffer this problem, i am.just one if the lucky ones who feels it and is sensitive to this. my question is: do i need to increase a bit my dosage since.im kina immune to my normal dosage? I know drs know. best

    I hope some of you reading this could share some of your similar ordeals or maybe

    Share some that would help alleviate my problem. Its really a bummer. I hinders my. Daily routines. Really affects mr daily duties. And mostly of all my family suffers because of my moody spells. Thank you for reading my desperate call for help. smile guess i have to live with this and adapt. Its just so SCARY

    Garrk through out

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    • Posted

      Hi Garry1136, thanks for your reply.  You seem to have travelled through choppy waters, especially re: frequent changes in medicines. I have been told that sometimes the manufacturers add different 'fillers' eg binding agents & that this can affect the efficacy of some drugs. It's worth monitoring different versions of the drugs as sometimes the pharmacies will try to buy eg cheaper versions. It's worth monitoring which versions of drugs work for you & those that don't. I experienced that with amiodarone - one particular version worked, others didn't.  It was totally by chance that I found that out !  I wish you well. All the best, Zena 

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    • Posted

      To add a little more ,with your indulgence, as you said. During my voyage through chappy waters these past few months. I had no one to relate to except my GP. Which i could not get to call or get a hold of except when i schedule for a check up.. Usually when i need to see him he's always out of town!!. And if i'm lucky

      And he's in his clinic. You have to wait a long line. not. mentioning hes exhorbant PF. Maybe your'e thinking, why not change Dr's? At this point in time i can't. Hes been a long time Gp of mine, and if i do change Dr's , i would need to have several test to be done. And its so expensive, here in my country. Just to have ablations and cardioversions etc etc would require you to at least have. Half a million. And here. Only the rich can afford, i have insurance which doesn't cover these, one am just one of the many with this issue. My point is. Ever since i discovered this forum, i felt relieved, happy, in a sense knowing you have a place to share. And there are other. Great persons, with the same or least ordeals , that want to share as well, these past few days, i really felt better, there are no words for this. I thank this site so much. And pray we all get better .

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  • Posted

    I had a couple fainting spells I related to Flecainide. My doctor said it was low sodium. I've read Long QT syndrome (LQTS) can be related to low potassium which is similar in nature. Do you have strong evidence of a link between Flecainide and LQTS which is certainly even scarier than Afib since it can cause sudden death from heart failure? I have been looking for a Flecainide alternative and in the meantime cut the doctor recommended dose from 200mg per day in two 100mg doses by half. The fainting spells abated, but I often feel light headed and have to constrict my midsection and hold my breath to keep the vasal (so?) nerve in check as another heart doctor suggested.

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    • Posted

      Hi Mikelly 321, thanks for responding. I will look into the sodium connection. My evidence for LQTS/Flecainide comes from UK National Health Service:  check it out on www.nhs.uk/conditions/long-qt-syndrome, which provides a list of "Drugs which people with Long QT Syndrome should avoid".  The list is vast, & includes Flecainide, Amiodorone & many other familiar medicines. Like you, I also try to cut down ingestion of Flec, but the result often is that the rate gets out of control. (When I talk of heart rate, I mean 'resting heart rate' as, obviously, when you are out & about, it will be high naturally. However, I sometimes compare mine with my partner's, whose hr can be 60 when we are doing the same activity).  I discussed the Flecainide issue with a pharmacist today, & got no further: he said Flec. was probably best, even with its side effects. But he also asked me to let him know if I find a viable alternative.  I am due to see doctor on Thursday & may get a bit further.  Thanks again for your message;  I will let you know if I find out anything useful. Good luck !   zena2016

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    • Posted

      Hi Mikelly321, thanks for your reply .... I sent an answer, but included the UK national health service website which I had googled as it gave a list of drugs which people with long QTS should avoid.   It's possible that the moderators might not let the post through, (I have just read their Ts&Cs). The above details should give you the same information as I tried to send you. All best wishes, Zena

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    • Posted

      I was looking more into the idea of cause and effect between Flec and Long QT. I'm not sure 60 is a good rate to set yourself against. It seems fairly slow. And I'm more concerned about the rapid fluctuations of Afib and more recently what appears to be a slower, less pronounced beat accompanied by dizziness. I'd prefer a bouncier beat (lol). Thanks for the info, and I look forward to any further info you can squeeze out any reputable source regarding best med practices. P.s., have you done ablation or other treatment options beside drugs?

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    • Posted

      Hi, I'm not expecting a rate of 60 bpm - although when I was younger I was able to do reasonable exercise & stay at 60 ...   I'd be very happy with anything up to 77 (resting hr) which allows a margin of 3, before you get to 80bpm.    I've had 3 x cardiversions and 3 x ablations (last one in 2008). Will update you after Thursday, even if it is no advance on current status quo.

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  • Posted

    You might try Propafenone, I've been on them for about a year, they have done reasonably well in eliminating AFIB but they are not perfect. I actually went off beta blockers for the same reason you mentioned. Good luck, keep us posted.

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    • Posted

      Thanks Marilyn,   I've just got time to look up Propafenone before I see the doctor tomorrow, so thanks for writing back. Will let you know how I get on.   best wishes, Zena

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  • Posted

    Propafenone sounds a little scarier than Flecainide.
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  • Posted

    I have a tale which may not be right for you, but it may. Okay. Here's my story. Spoiler alert: no cure at the end, but a happy ending nonetheless.

    About forty years ago, more or less, I began experiencing episodes of "palpitations" associated with drinking alcohol. My doctor told me it was a condition well known to practitioners and was called "holiday heart". Cool name. The episodes lasted several hours and resolved without any intervention. Then I started having the same sort of episodes without any discernible trigger. My annual visits to my physician seemed always to occur on days when I was normal sinus rhythm and I was a little inarticulate in describing my symptoms to the doc. He told me to go get an ECG next time it came up and I did. Atrial Fibrillation. The paroxysmal episodes lasted longer and longer and the intervals of NSR were shorter and shorter until I was in chronic afib. So then I acquired a cardiologist who treated me for a while with various ghastly meds (Propafanol, Flecainide, Amiodarone) which did no good and gave me the willies about possible side effects (such as death in the case of amiodarone) which included the actual side effect of atrial flutter, which did not kill me but did provide me with a heart rate of about 150. I quit that medication (don't remember its name). The flutter continued and my cardiologist, who was interested in ablation therapy and had come from the Cleveland Clinic, told me that flutter was a good thing because he could cure it with a right sided ablation. I have since concluded that he could not do the left sided ablation because it is more difficult, requiring piercing the inter atrial septum and trying to put an uninterrupted scar around the pulmonary vein entrances in the left atrium. The right sided ablation was uneventful, my arrhythmia quit on the operating table and my NSR lasted three days before reverting to my (by then old) friend afib.  I was about fifteen or so years into my disease when I met my now best friend John who responded to my sad tale of heart problems with, "Oh, yeah. I have that too. Had it for forty or so years since I was twenty". John is a vigorous chap, very active, who ignores his disease when he can and sits down when he cannot ignore it. I decided that was the path for me. 

    I am on warfarin and control my INR by frequent testing at home and manipulation of my diet for fine tuning. I believe exercise actually diminishes the severity of the symptoms so we exercise. My wife and I take bicycling vacations annually (we are not spandex riders, more like cargo shorts riders), ride a lot when we are home and are driven half mad by our fitbits which force us to exercise when we do not want to. In short, we have a great life. When I bring her tea upstairs in the morning she speaks first because I seldom have enough wind to immediately begin talking - but I get over it. Any immediate explosive exertion is a time-out caller and I have orthostatic hypotension so that standing up must be done with regal deliberation. Jumping right up results in a whirling world and a quick trip to the floor. I conduct mediations for a living and I am pretty sure my strategies are opaque and none of my customers know I am ailing. And really, I am not. I do not like atrial fibrillation so I ignore it as much as I can. On our bicycle trips I wear a MedAlert bracelet to let any ambulance drivers know why it is that I am bleeding so copiously. I do not talk about it outside our family - don't you hate it when old people (I am 78) conduct "organ recitals" to talk about their ailments - and other than my annual cardiologist visits I just cruise on. I read these sites to see if anything magic in the way of a cure has surfaced, but if it has it escaped me. 

    I will be John to any who are interested in turning their attention away from their disease. It has worked wonderfully for me to do so and I think it can work for anyone. The disease imposes different limits on each of us who has it, but there is a fine life to be lived within the limits.  

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    • Posted

      Great email, thanks John.  There are several ideas that I can take forward from what you have written. I have similarly come to suspect that exercise (walking with a moderately fast pace) is beneficial, especially in a group of friends in pleasant countryside.  Trouble is, you can't spend every day walking !   I wish you many more years ignoring AF and hope that I will come to a point where life is balanced more in favour of enjoyment & absolutely no stress !   best wishes, Zena

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