Here is my dilemma: I had my 3rd episode of AFIB in three years. After the second one, my cardiologist put me on 50 mg's 2X daily of flecainide. After my 3rd one- almost a year later- he put me on 100 mg's twice daily. I am now unable to climb stairs without feeling faint. My head feels like it is stuffed with cotton, I aM short of breath, and my usual workout at the gym ended after 10 minutes on the elliptical ( I had to stop 3 times because my chest felt like it was going to explode).
I have a stress test scheduled two days from now. After I called the cardiologist, and by the way, waited 4 hours for a call back, the doctor told me "do not exercise until after your stress test." I was not given this information at my follow-up last week- š
Has anyone else experienced these side effects? I am about to stop the flecainide on my own! I am not a sedantery person, and I feel like a prisoner in my own body.
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Clarajoan
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We can't advise about medication but you should see someone urgently if your pulse has dropped to 26/ Your GP can advise before you get to cardiology/stress test as this is not acceptable.Don't just put up with this. Is your Cardiologist also an EP? I ask because you may need to look at a wide range of treatment options- but your meds certainly seem to need review- take care
I agree.. to make matters worse, the cardiologist had his nurse call me to advise changing my metatropl to the AM, as the event monitor I am wearing has indicated that my heart rate at night is 30!! I take 25 Meg's in the evening. I am still waiting for a return call from the said nurse to advise me! Ugh. My question: "If I change it to the AM, and my heart rate is dropping with little exertion, what will happen? I am so frustrated....
I also take Flecanaide and have never experienced such symptoms. I would be sure to be seen by your Dr because this may be an issue unrelated to your medication. I hope you get answers soon, Gracey
I have been on 100mg x 2 Flecainide for 20 years+ and due to changes in my condition this was increased to 150mg x 2 for about 6 months.
I have no issues such as yours at all. I am aware of the issues with slow heart rate and the related symptoms because this is what happens to me if I am give even small doses of beta blockers.
This all adds up to my mantra that I have often repeated on this forum.
WE ARE ALL DIFFERENT
Us forum members are (well most of us) not doctor and should not and cannot advise you on this matter.
I echo the above posts and suggest you get checked out physically (not a phone call) as a matter of urgency.
Hi, I've been on flecainide as well , did flecainide stop your episodes completely or do you still have some, I always wonder if people on flecaides can still have episodes while on Flecaide, and still the flecainide is not considered a failure, would appreciate your feedback.
Feel so sorry for you, with them mucking you around.
My specialist gave me beta blocker sotolol and my heart went like yours, went grey very frightening. I was told to stop taking immediately, only took one tablet. Effects of it lasted 7 days
3 episodes in 4 years? Why bother taking medication.. Apart from anticoags if necessary. I have several episodes a week .3 in 3 years would be bliss. Flecainide has so many negative side effects.
I agree. If you only have had 3 episodes in three years why be on continuous medication except for anticoagulants? Or take it only when you have an episode.
I was put on flecainide and bisoprolol and my heart rate dropped to 32 and was advised by a doctor to get to A & E immediately. I was taken off bisoprolol and was told that the combination of the drugs did not suit me. I stayed on the flecainide for almost a year until my ablation and was ok with it just easily tired but heart rate was steady at around 60bpm. I was told by the doctor that once your heart rate is in the 30's you have no reserves and it is likely to stop so I would suggest you treat this with real urgency.
Has anyone mentioned heart failure to you? Your symptoms sound similar to my husband and he couldn't breathe. He had fluid on his lungs. He suffers from AF as well but it was the heart failure that was making him breathless. I can't believe they never told you not to exercise. I'm not saying that's what you've got but there's no harm in asking as your specialist seems to be failing you in your care. Good luck hope you get it sorted soon x
My mother had to have a pacemaker put in because her heart rate was dropping down to 35 beats a minute and she was passing out. It's called syncope. If your meds are causing this, then it may be a different story, but it is not acceptable. The pacemaker keeps my mother's heart rate from dropping below 60 beats a minute. Her pacemaker works 80% of the time, so it does what it is supposed to do.
3 times in 3 years!!!!!!! I wish...I get it 3 times a week. I ride most of them out by doing deep breathing, resting, and listening to a recording of a normal heart beat. If your Dr is a GP get to a Cardio, I have found most Drs, Cardiologists included, have no idea how to really treat this 'disease' it's all hit and miss, even ablations which don't work for a lot of people. It was suggested I have AV NODE ABLATION, that was from a 40 something healthy Electrophysiologist who couldn't understand why I was horrified. Why would I want to cut the nerve that keeps my heart beating and rely on a piece of metal in my chest...god forbid it fails and I'm unable to reach hospital in time, or worse a miracle cure arrives and it's too late because my hart can't beat without my piece of metal.
All the medications we take for this damn disease are toxic and can and do kill people. Anti arithmetics, beta blockers, etc...all are life changing regardless of what your well heeled specialist says.
Flecainide is relatively good, but why would you take it every day?
If you've only had 3 events in 3 years, that's overkill.
Google the number of people that die each year from medications, operations and misinformation from the medical fraternity....you will be stunned.
Take control of your own health, by all means seek medical care, but do your homework, search the web for tips and clues. A fabulous site is afibbers.com , amazing info there.
Unfortunately a lot of people just accept what their Drs tell them is sacrosanct. BE PROACTIVE.
Ps...Have you tried pill in the pocket? PIP as it's known. Do you have other life threatening illnesses that cause you to be treated so aggressively by your Cardio? have you had a thorough medical work up. Is there something you think may have started the episode...my triggers are eating to fast, exerting myself too quickly, alcohol and caffeine.
If your are overweight that has been medically proven to have a big impact on AF ....lose the weight.
Thank you for your encouragement. I have an appointment this Friday with an EP at a well renowned hospital. My choices are a pacemaker or ablation. I am horrified about the ablation. I have read enough to know it is not 100% effective; the pacemaker allows my cardiologist to continue with flecainide to control AFIB. At least the doctor cut back my meds until I see the EP! I feel back to normal, but I know that I could flip into AFIB with the smaller dose of the anti-arrhythmia medicine. I hate this disease... it is insidious and sneaky. Not predictable and, you are right, misunderstood by most medical professionals.
Ask your specialist for an honest answer. Ask him does the pacemaker stop AF. No it doesn't...and many people report feeling just as fatigued and ill as before the pacemaker.
I am one of those who knows exactly when I'm in AF and when I'm not. I am extremely sensitive to the condition. I refuse to have an operation that won't make a skerick of difference.
Pill in the Pocket worked for me.
Whatever you decide remember it's your body and your decision. Take Care.
My choice was the same but I went with ablation and I'm glad I did. The ablation idea horrified me too but having a pacemaker so I could continue to put three toxic substances in my body every day for the rest of my life seemed idiotic to me (no offence meant, we all have different red lines!)
I had my flecainide reduced last September and have not had any episodes since. Don't know how you feel about mindfulness,self hypnosis and meditation but the mind body connection is ignored too much. I too have had only three episodes and am seeing Dr Sanjay Gupta tomorrow privately in the hope of having a plan rather than just being discharged 4 years ago and left on "heavy"meds
Just read this - I would echo several comments re taking regular medication for so few episodes. I too was prescribed flecainide daily but now (very rarely too) use it as a PIP, and feel much happier about the situation. Good luck tomorrow, let us know how you get on.
I'd go with an ablation over living With taking a hideous beta blocker all my life. I had my ablation 2 weeks ago and so far, although still recovering, still think it was the right decision. I too was horrified by the thought and even on the way to theatre was asking my husband if I was doing the right thing. The idea of what it represents is awful but for me personally I am being changed by the beta blockers not the condition. On them I am more miserable, exhausted, irritated etc ablation, therefore, gives me a chance to not be on them. I am very optimistic.... it seems to have a reasonable success rate to warrant giving it a go.... but it's all down to personal choice.
I am Schulz daughter for an ablation in 2 weeks. When I went to see an EP, as opposed to the cardiologist who doubled the flecainide, he told me I would probably never tolerate the anti-ayuythemias. It made the decision easy; although I have reservations about the procedure too. I feel like I am stuck between a rock and a hard place. I do not want to experience the bradycardia again- that was debilitating. I am lucky I didn't have a serious accident, as I was driving around in that condition, and I might add wearing an event monitor that never sugned athe cardiologist that I wAs having issues!!! In fact, after I contacted the cardiologist about dizziness, he checked the strips! Then l hell broke loose! I am beginning to think the monitor is a joke.. more money in someone else's' pocket. I appreciate everyone's advice. I will have the ablation and hope for the best.
When my husband was on Flecainide, his blood pressure and heart rate were always too low. This medication is very powerful and he could not tolerate it. His blood pressure and heart rate are much more normal now without it. Flecainide may work well for someone with normally high blood pressure and/or heart rate, but it can be a real problem if these indicators ar usually low or near normal
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