Hello everyone! Long story short, last May I had an episode of atrial flutter and I had to do a cardioversion. After that, I was put on bisoprolol and rivoraxoban but unfortunately I got a lot of terrible side effects. The bisoprolol made me really exhausted and I gained 7kilos of fluids. The rivoraxoban gave me a skin rash, menorrhagia, my legs were full of bruises and the knee jonts were swollen. I couldn't even walk because of the pain. So I decided to stop them, and my cardiologist was ok with it. My ecgs have been all fine and my heart rate has been in the normal range since the cardioversion. Last Friday, I saw another cardiologist (I am followed by two cardiologists) and he decided to put me on another beta blocker and anticoagulant just to be safe. I told him I was fine with it but I am actually not, because I don't want to feel like s**t again. So I didn't take them. Is there anyone else with atrial flutter that is not taking any medication? I know that there are some surgeries to correct it, could they be a possibility for people that cannot tolerate medications? Obviously I will discuss it with my doctors too, but I would like to hear the opinion of people with the same experience. Sometimes doctors don't understand how medications can affect us, I am not against medications but I cannot take something that makes me feel worst than when I don't take it.
Stopping medications: Hello everyone... - British Heart Fou...
Stopping medications
Dear Laurap18
Its a question that pops up now and then, "I feel better without my medication so should I stop it " { or already have done }
Its extremely difficult for anyone to comment on you personal reactions to the medication offered to you, and I say offered because that's what they are , offered on the best advice that is on hand at this moment, based on hundreds of thousands that have gone before you and me.
No one is forced to take this type of medication { even if it seems we are }
Many can tell you their own story about the crippling effects that they have suffered from their medication, but a lot of this can controlled by changing the meds, their potency or even the time they are taken.
It can be very hit and miss and many do not end up on the blanket drugs that are given at the start of their journey, but on a cocktail geared to them.
The forum is awash with folk that have stopped their drugs and how amazing they are feeling, most of our medication is to stop the damage getting worse and even, for example in the case of ejection fractions, improving it.
At the end of the day its your body and you have to do the balance thing, good time now hoping not to cause to much damage for later, or a reduced time { new life } with the hope of a little more longevity .
My choice is the drugs { tweaked over a long time to me } and the daily hope of a little more time please.
I really can understand your dilemma its a very difficult situation to be in, but its towards the medical profession you need to aim this question and try to find out an accurate prognosis to the outcome of your medical condition, on or off the drugs, try to be guided by them { get a second / third opinion if needed } before you decide.
Take care
Thanks for your answer 
Personally I prefer a shorter life but as normal as possible. I am not scared of dying, I am scared to be alive without living. I will definitely talk with my doctors and see if we can find any solution together.
Then that choice is yours and I for one would stand by that choice,
I also am not afraid of dying { technically have already 5 times } but just enjoy being alive so much.
Have paid and arranged for my funeral and even explored the local Hospices , but I have been told that when I go it will be sudden { after the CRT-D try's its thing } so the room is not needed.
Death is a massive part of living, our experiences of the door closing to this life is as dramatic as the door that opened into it for us.
If my death is half the journey that my life one has been, then it truly will be a happy ever after for me.
Take care, find those answers and plan the rest of your incredible life the best you can { please remember your loved ones on your journey as well }
Yes i think this all the time with my meds. Betas, entresto etc. I do wonder and it seems that the only symptoms i get, is from the meds itself and not the heart failure anymore... But then if i stopped, would the heart decline quickly? They tell me it might do... So. Tough one.
But one thing i do that does help, is split the betas and entresto. Morning and evening dose. Spreads it out so not as intense during the day. Good luck champ
Thanks for your answer Maybe splitting the dose is a good idea.
As I say on here many times we are all different in terms of age, health conditions, gender, and genetics to name a few and in many cases our response to medication can differ too. You have ben prescribed medication for your conditions as presented, by health professionals who should know far more about you than anyone on here, and so I suggest you revert to your prescribing physician if you have any doubts. Certainly no one on here should be advocating not taking prescribed medication without consulting a professional as it is against forum posting rules. However in the meantime you could discuss your situation with the BHF Heart Helpline nurse who will at least be able to give you a professional perspective.
Thanks for your answer Obviously I will speak with my consultants again, but last Friday I was too angry to do. The appointment didn't go exactly how I thought it would.
hi Laura - may I suggest that you look at the AF forum.
Bisoprolol often causes problems, especially for females and it’s really hard to come off, I certainly didn’t tolerate it and would go so far as to say it harmed me. It is often the first Beta Blocker tried. As you are probably aware - it will reduce your HR and help stabilise your BP but I felt terrible on it and SO much better off it.
That said, how high does your HR go in Flutter? Many people have HR of 200+ when in AF & AFL so controlling HR is important but ask your Doctor about using Heart Rate control as a PIP - ie only when you need it and/or anti Arrythmia drug.
I think you have to be very honest with your doctors- if you needed another cardio version you would need to have been taking anticoagulants but there are alternatives and the most tolerated seems to be Apixaban. It’s really important that if your CHADS score indicates you take an anticoagant to lower your risk of stroke.
Please look at the AFA for information on treatments for Atrial Flutter and YES there is a procedure called Catheter Ablation which can be effective for eliminating AFL and is much easier and often has better outcomes than ablation for AF.
heartrhythmalliance.org/afa...
Thanks for your answer My heart rate is now ok and my CHADS score is 2 because I am a woman and I have heart failure. It's not really high.
PS - yes there is an alternative to anticoagulant meds but it’s difficult to access on NHS. You would have to have proved you are at risk from anticoagulants or have a serious blood disorder.
It may be available as a private elective - it is much more common procedure in US.
Look up Watchman Device - not sure it is available for Flutter?
I have just had an ablation for atpical atrial flutter with insertion of left atrial appendage clip. This clip may remove the necessity for anticoagulants I believe.
The NICE article outlines significant risks for this procedure. I would have to be told that there was no option before I would consider it.
Obviously every surgical procedures have sone risks, so it's something that needs to be discussed properly.
An important question, leading to what I think is an intelligent and balanced discussion. On my journey I have had useful discussions with different professionals: GP, cardiologist, pacemaker specialist, neurologist (when I had a suspected stroke) in finding the right balance for me. The nurse at the cardiology department has been particularly helpful in relation to my anxieties that are also part of it - my 10 year older brother had afib, then a stroke and died 3 years ago.
The professionals have experience with thousands of patients; I have the unique experience of being me. Together we are finding the way. Good luck on your journey.
Thanks for your answer I will talk with my consultants again and hopefully we will find a solution together.
I would suggest that you discuss the medications with your doctor. I can understand ýour reluctance and apprehension, I have weird reactions to meds and it's very disturbing.It may be that through open discussion you can arrive at meds that are least likely to create problems, or it may be possible to start at a lower than optimal dose, let your body get used to them and gradually increase.
Stress to your doctor your apprehension and concerns, I often find that telling them this and literally asking for reassurance helps them help me, and ask for tips about time of day, with or without food, etc. Good luck.
Thanks for your answer I will try to contact my consultants as soon as possible, and let's see if we find another solution.
Hi Laurap. Your post caught my eye and rang a couple of bells, prompting me to reply.Please know, I respect your decisions, your body, your life.
This is just a cautionary tale, based on my personal experience.
First, just in respect of the Bisoprolol:I'm on a high dose of Bisoprolol, 7.5 mgs. I was advised to take it at night to avoid any potential fatigue occurring during the day and it works.
I've been on it 3 years without any negative issues.My starting dose was 2.5mgs but that didnt hold my AF, so it was increased over time, to 5mgs, then finally 7.5mgs, on which I'm pretty stable. I occasionally get the odd flutter but I try not to over-think it and it soon settles.
I read your post with interest, as when I was your age, I had a very similar mindset, despite even then, my being a poorly controlled diabetic.
I refused to continue to take my prescribed statins (they gave me an ache in my leg) and, I was not fully compliant with my diabetic medication either.
Guess I was in denial and being rebellious, I was enjoying life, not thinking of the future and not paying heed to all the advice my GP gave me.
My outlook was pretty much "I'm here for a good time, not a long time" . . When I die, I die . . .
Fast forward 30 years, and boy was I wrong.
I'm now 61. I had a stroke at 57, a silent heart attack at 58.
I've since been diagnosed with 2 separate heart conditions, 1 of which is life-limiting, so guess I'm going to get pretty much what I agreed to some 30 years ago.
I was in need of a quadruple bypass back when I was 58 but was told it was too risky and I wouldnt get off the operating table alive.
So now I have 3 stents and a bucketful of essential, life-prolonging medication to enjoy till the inevitable time comes, which incidentally, has been hastened by a recent diagnosis of having CKD, Chronic Kidney Disease, Stage III, with Dialysis waiting in the wings.
My chronic long time diabetes, despite being on insulin for the last 20 years, has resulted in my having poly-neuropathy, severe nerve damage to my feet, hands and bladder (go figure . . ). Nerve damage is irreversible, resistant to treatment and incredibly painful.
I fall frequently as I cant feel my feet.
I have retinopathy in my eyes, currently undergoing hospital treatment.
So, whilst overall, I still favour quality of life over quantity of life, it's not that simple, as when you are actually faced with the reality that you ARE going to die, well before your expected sell-by date, shit gets real . .
By this time, the quality of life has already started, significantly, to decline and go downhill and theres no coming back.
The effect on my mental health has been very negative and depression takes hold, and knowing that for the most part, I did this to myself - by ignoring medical advice, is just mortifying.
So whilst you may "feel better without medication" as indeed I did, please think about this really seriously.
Years may pass and you may still feel fine, but "damage" may still be going on inside.
Discuss your concerns with your GP/Consultant.
Nowdays, there is so many medications out there and there will be one that suits you and takes care of your condition.
I can't believe I complained about having a bit of leg discomfort and stopped taking the statins on that basis alone.
Also medications can take time and often if you can bear with them for a while, commonly reported side-effects that you may experience, pass.
How one feels at 30, although valid at that time, changes over the years, one thinks nothing will change and you'll still hold the same thoughts and views as the years pass by.
It rarely works like that.
Please look after yourself. I'm sorry if I'm sounding like some old biddy, I'm certainly not that, but I dont want you or anyone to end up in my situation, with a life curtailed, when it's so preventable.
🙏🙏🙏
Thank you for such a brave answer to Laurap18 original post,
I read with fascination the brief insight to your journey and what an incredible time it has been { and continues to be }
Thank you for being able to admit to your past mistakes and how they reflects on you now.
Please try not to be to hard on yourself because the young you was a different person and you forgot to tell us the fun that was afforded you at that time with your decision not to take the medication { or maybe that's a secret that you will keep ! }
Take care
Thanks for your answer I'm definitely gonna think about your advice. Take care you too.
Bless you. Thank you for reading my post.
Oh yes, those 30 odd years were amazing, I lived my best life ever.
Unfortunately all good things come to an end, it just came too soon.
I forgot to mention that I didn't just change my ways after my stroke happened.
I had started 99% compliance about 5 years prior to that, but obviously it was too little, too late. My ship had already sailed.
My only saving grace, if there is one, is that one of my heart conditions was formally diagnosed as an genetically inherited one, the Hypertrophic Cardiomyopathy (with obstruction).
Sadly, this is the life-limiting condition.
I was adopted at 3 months, so had no idea about the medical background of my biological parents back in 1961.
Of course the CKD is a major concern, and in reality, this may well be the condition to finish me off, before the heart, its very much pot luck.
But it is, what it is.
No amount of self pity is going to change the outcome.
My life now is very curtailed physically and what with Covid and the self shielding, living alone and isolated for the last few years, I've been to some pretty dark places and have lost valuable time.
But no more, I have now made a conscious decision to carry on living, opposed to merely existing as I have been doing for the last few years, sitting and waiting for the grim reaper to arrive.
My thinking is, how I am today, is the best I'm ever going to be . .
For just how long this will be the case is an unknown but there's only one direction when the time comes and its down.
So I need to utilise "now" there are no guarantees for tomorrow.
So, I've just booked an overseas holiday for some spring sunshine, and for another one in the autumn.
Life goes on, watch this space 😉
Thank you for your kind concern.
I hope you keep as well as is possible.
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