hello all, has anyone come off all meds, I’m so low at the moment and just want off of all this toxic medication that just cause side effects all the time. I’m interested to know if anyone has come off medication and gone natural remedies. I have been on bisoprolol and flecainide for years now( about 4/5 ) but this last year all I’ve done is cry and feel low, at a loss as different pills will bring different side effects . Would be grateful to hear back.
coming off meds : hello all, has anyone... - Atrial Fibrillati...
coming off meds
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Electricblue1
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hello, I guess it depends on your diagnosis. Personally yes I did come off all medications but only after an ablation. I had that done after 8 years on different beta blockers and being at the end of my tether.
Hello, I’ve had two ablations and still get episodes here and there but I am so fed up with how the medication is making me feel.
Ah ok, so what medications are you on. Maybe consider pill in the pocket if your EP agrees.
Empathy, I had similar experiences on medication but worse than that, the meds exacerbated another condition so I had to stop them cold turkey - relief! I should explain that I was at that time taking meds to ensure AF didn’t return during the blanking period following ablation. It took quite a while to start to feel better and at that time the ablation held but AF returned about 3 years later. All I can say is that I could cope with the AF, I couldn’t cope with the meds, they are certainly not for everyone.
There are no ‘natural remedies’ which have been tested or approved but plenty of people I am sure will give you what they believe has helped keep AF at bay but please do take very good care with ‘natural’ remedies as they can be potent and as they are not regulated you really have no guarantee of the ingredients or amount of active agent.
I take nothing other anticoagulants for my AF but I have a pacemaker which has helped a lot.
Best wishes
Hi cdreamerI'm interested in your having a pacemaker, would you mind if I ask what type you have and when you hadvit fitted please?
I'm wondering if that's the next step for me but I'm a little unsure how it all works.
Thank you
I had a RST - ReSynchronisation Therapy 3 lead pacemaker fitted in 2018 and now have a AF burden of less than 2%. I had been on Flecainide and Bisoprolol. After drug therapy + 2 ablations my choices were Amiodarone (too chancy with other meds I have to take) or Pace and Ablate. Pacemaker was implanted and I was to go forward for ablation of the AV node which is a last measure as it leaves you 90% reliant on pacemaker. After 6 weeks when I was due to go in for the AV ablation I discussed with my EP if I could delay seeing as I had no AF. My doctor agreed and said they had known several patients for whom cardiac resynchronisation pacemaker had helped.
Hope that helps
Thank you, that's really interesting, I hope you're presently keeping well.Best regards
K
Thank you, if I go natural it will be homeopathic as I have a good lady that’s treated me for years regards another problem and very successfully. I know it can be dangerous coming off but I am seriously thinking of it.
Have you considered an ablation? A successful ablation has allowed many, including myself, to come off all afib medications. And in fact, that was primarily why I got an ablation to get off of Flecainide , etc.
Jim
I think Electric had one about 3 years ago.
I didn't see had an ablation in the bio, but maybe not updated. Electric?
Jim
Could be wrong but it's such a distinctive name. In any case, what matters most is supporting them - which btw you always seem to do with informed thoughts.
Hello, I have had two ablations but the episodes of AFIB are still there sometimes.
Right at the onset, on diagnosis in Jan 2010, I elected NOT TO GO the ablation route but go WITH MEDS. Coming up for 15 years now on meds, no sweat. With the benefit of nearly 15 years on this forum and its predecessor hosted by Yahoo I wouldn't even think of ditching medications, NOR would I even consider an ablation. Further, I would not consider natural remedies either - preferring instead to know (thanks to Warfarin ) exactly how thick/ thin my blood is and how food/diet affects it.
I have been approved for the use of Flecainide but my Cadio Consultant and I are holding that in reserve as a last resort - if needed.
My meds are Felodopine 2.5mg, Sotalol 40 mg morning and evening, Warfarin as per INR ( and I self test and sometimes self dose ), Simvastatin 40mg ... one other drug too but its not in the least cardiac related.
John
Hi John, interesting drug selection. May I ask why it was decided in preference to Flecainide as after 10 yrs AF free my Flec may now be the cause of 'Flutter' and warrant a change.
Thanks 2nd try ... Before I reply, just need to check consultants letter - makes sure my memory is accurate 😱 ... will get back to you.
Hiya secondtry,
Couldn't find what I was looking for, so it'll have to be memory.
I guess it it comes back to the year of my diagnosis what what my, then, Cardio Consultant decided what was the way to go. Jan 2010 and the fact that I cannot recall that Flecainide was the drug of choice it seems to be these days, the current era.
Stay with me. From mid 2007 to Jan 2010 I was progressively introduced to Simvastatin and Ramipril. When AF mugged me the Cardio Consultant of the day in the hospital I ended up in retained these drugs and added Bisoprolol and Warfarin to the mix. Just after I retired in 2012 my heart chucked another wobbly and my GP addeed to the mix Felodopine.
It was not until late 2023/early 2024 when I saw another Cardiac guy that he reviewed all my medication. By this time I had dropped Bisoprolol, spent 6 months on Nebivolol and, at the decision of this new Consultant moved onto Sotalol. In April 2024 I got checked out ( blood tests ) as to whether Flec was suitable for me ..... it was as it happens, however, we decided that we'd leave Flec alone and just see how I'd go on my very latest drug intake, which at the time of writing this has seen me drop Ramipril.
So at the time of writing I am on Simvastatin, Felodopine, Sotalol and Warfarin. At my latest consultation the Cardio guy said he was happy with this mix and felt the Flec was too powerful a drug to be used in what is now non existant AF but plenty of ectopics in action on a very, very random basis. Basically, I'm now as normal as I'll ever be for an 80 year old. However, as I am now approved for Flec it is useful to keep it on 'standby' should things deteriorate in the months ahead. Even my INR test results are right on target. So, everything is sweet. I do take another drug to, but it isn't cardiac related.
Of course the reader may think, on reading this, what an awful lot of faffing around with drugs. Well yes. but fast rewind to Jan 2010 it was my choice to go the meds only route and I made that choice knowing that in the years ahead such medication would be subject to review from time to time. At this stage I certainly don't want Flec upsetting an almost perfect world. 😀😀 Whats not to like.
It will all be reviewed again in March/April 2025. And thus far my heart isn't BBQ'd ! I hope this helps.
John
Hello, it’s not for everyone I know. I had a terrible time on blood thinners as well so come off them, you can get very good natural blood thinners. I’m on flecainide which apart from flashes in the eyes it does not cause me any problems but it’s the beta blockers that does.
Well if you were feeling lousy all the time due to side effects maybe you would think of ditching the meds especially if your episodes were infrequent. Women tend to get more side effects from meds as well. This might be because no notice is taken of our physiological differences , until quite recently drugs were not trialled on women or even female lab animals and even though that has been rectified there is very little if any sex differenciation in the reporting of side effects or attempts to find out if there should be differences in dosing for women.
Sorry to hear this. My feeling and advice in cases like this is to agree with your GP that you do a trial period off medication, one medication at a time, to see what happens. I'd start with trialling a stop of Bisoprolol, for me that's never been a useful option for my arrhythmias. What dose are you on? You may need to taper if on a large dose.
A while back I tried coming off everything (this was post ablation) but I found Flecainide was helping quell the ectopics and the short runs of tachy I got. That worked well for many years.
Good luck
I'd start with trialling a stop of Bisoprolol, for me that's never been a useful option for my arrhythmias.
I second this approach as beta blockers such as bisoprolol are often the culprit in terms of bad side effects . If they won't let you off bisoprolol because of the daily flecainide, ask to be switched to the drug diltiazem, which offers the same protective mechanism for flecainide as bisoprolol, but in many cases with a fewer side effects.
Jim
Hello, I’m on 1.25 bisoprolol in morning and 2.5 at night. Flecainide 50 morning and night, my joints have all flared up as well since I’ve been on them.
That is a hefty dose of Bisoprolol. You need to find out if such a high dose is necessary to counter any pro arrythmia effects the Flec might have and if you can gradually reduce it. Many people here who take Bisoprolol alongside Flec take a much smaller amount . Nebivolol is an alternative betablocker and tends to have less side effects than Bisoprolol. There is also the possibility of reducing your daily dose of betablocker and taking extra as PIP during an episode.
I sympathise with that feeling, I have had some very bad side effects from new medication prescribed this year. But I don’t see why your medication should make you suddenly feel depressed unless the dose needs adjusting. I had a look through your previous posts and see a change to diltiazem has been suggested. Nebivolol - better for asthma - has been suggested too. If you feel so bad why don’t you try a change before ditching meds entirely? It looks as though you have had two ablations already but there are still more options, minimaze or pace and ablate, but I’d try a change of meds first. Though be aware that if you go straight from bisoprolol to diltiazem you may feel pretty bad for a few weeks while the bisoprolol wears off.
Hello, my worry is I’m a lorry driver and have to be 100% ok, no side effects in order to do my job. I do have a lot going on in my life and have been ok on the meds but out of the blue it’s been worse. The worse is forgetfulness, that is so upsetting.
I well understand about the 100%, I'm a retired UK based PCV ( bus and coach ) driver. I retired for the second time on 5/7/24 aged 79. I retired then only because of increasing feelings of weariness/tiredness however until that date I had not experienced side effects - except for the increasing weariness/tiredness - now 3 and half months on I still miss my bus driving and my regular passengers, yeah I miss my big toys too. 😀 That said of course my weariness/tiredness simply could well be 'old age' !!
Throughout my 15 AF ridden years of adult life I have been fortunate- for 2 reasons :
1] I was diagnosed and treatment started in around 9 hours of onset.
2] Throughout my whole life I have always responded well to medication, any medication that was prescribed to treat any condition I had going on ........... so against that background why wouldn't I go the medication route. I preferred that to someone burning various components in and around my heart !
Incidently, your dose of Bisoprolol isn't that great in my view, I've been on 5mg of various beta blockers non stop for 15 years. Now I'm on a fairly low dose of Sotalol - 40mg morning and evening. BUT STILL ............ my Flec is on standby. There if I need it.
Yes I've done this many times, particularly when I was first diagnosed and had no idea about the connection between strokes and anticoagulants preventing them. I've had AF for 19 years and have often experimented with coming off all medication, but AF has always struck in a serious way after months of being clear. I can tell you that I soon scuttle back to my pills.
Having had a go with reducing my meds, I would never stop my anticoagulant as having worked in a nursing home I've seen what strokes can do and to be honest I'd rather die than have a serious stroke. Some people can't eat or drink and are fed through their stomach, doubly incontinent, unable to move and look out on the world with confused eyes. So please never stop taking anticoagulants.
Several years ago, twice I stopped taking my beta blockers and flecainide around April time and went through to October with no AF attacks, then they started again. The third year I tried to stop taking them my heart continued with AF attacks, some quite severe where I'd end up admitted to a hospital ward and I've not tried again since.
I sometimes wonder if with our bodies having their natural way of healing us, could it sort out our heart rate too if we gave it time. Then I think of my experience and decide that's not likely.
The choice on what to do must be totally yours.
Imagine if you had lots of posts here saying 'try it' and that's what you did and then had a really bad AF episode. You would say that it was people on this site advising you to do so that are to blame.
Jean
Hi Jean, I have to thank you, because your dire warnings about severe strokes have helped with my Health and Welfare LPA and my Advance Directive. The only thing on my LPA is that I don’t want to be ‘saved’ if I’m not expected to make a meaningful recovery. What with your stroke warnings and the dreadful outcome for my husband’s cousin who had sepsis but ‘lived’ I think I would rather die ‘unnecessarily’ than live needing constant care, so I’ve made that clear to my family. My mother was a great believer in the ‘three score years and ten’ mantra but with medical advances I think ‘four score’ is more like it, though I’ve noticed lately when the deaths of famous people are announced many are younger than me, which gives me a jump! I prefer the ones who lived to 90 ☺️
Hi Buff
Well I'm glad my warnings re strokes was heeded by someone. Sometimes I wish I'd never worked at the nursing home as it made me very aware of how you can be quite well one day and then dead the next. My work was mostly office bound but in emergencies I could be called. I once sat with a dying patient while her family were on their way. I can tell you that I know for sure that her spirit had left her body long before she was clinically dead.
I heard a few days ago of someone I knew who had died on a cruise, he caught norovirus and covid while on the ship, it was one of those long journey trips. I'll never go on a cruise again, friends in their 80's who went on one a few years ago caught norovirus. It's such a shame the way this world has changed over the last few years.
We must all live life to the full while we can and in my mind at the very least take our anticoagulants.
Yes it's odd how when we get to our 70's we think we're not old until our 80's. I can remember when very young thinking that 40 was very old and I didn't want to live past that age.
Jean
Everything you say is so true Jean. The most important medication is the anticoagulant that’s for sure. I am terrified of having a stroke and would not want to live. I remember reading your posts when l was first diagnosed and have never forgotten how you stressed the importance of these drugs. Thank you. The world has changed, and it’s really not safe anymore and it’s like putting your life at risk instead of feeling the excitement of a holiday. Make the most of everyday and take it as it comes, that’s what my 90 year old friend always says. Worrying doesn’t add another day to your life, just subtracts the enjoyment of it.
What you said about sitting with the dying patient was very interesting, Jean. I had exactly that experience when my husband died. I’d been sitting with him for many hours but there came a point when I knew he was no longer there, even though nothing outwardly had changed and he was clinically still alive.
Quite agree about making the most of life and the fact that, as I get older the age I consider as really old age goes up😀
Very true, the last paragraph. I don’t feel old in my 70’s. !!!
I worked in the care sector too, for a long time. I worked for nursing agencies, in hospitals, care homes, nursing homes and peoples own homes. Trouble is, you see what could happen to you in old age. !!
We stopped going on cruises, after my AFib diagnosis. We’d been on 12 and were lucky there wasn’t any nasty outbreaks of illness on any of those cruises.
Oh to be young again.!!
Hello thank you for your advice, I would never blame others that would be unfair. I guess I would love to think I would come off and it would all be wonderful but I know it does not work like that. I am not on blood thinners as I come off, I had an accident at work and had bad internal bleeding so come off as it frightened me. I was told I don’t have to be on them until I’m 65, the side effects with Edoxoban was horrible.
Yes, 65 is the age when anticoagulants are usually prescribed here in the UK.
Myself and many other members on this forum absolutely hate taking pills. If we don't, I believe we up our chances of having a blood clot or an overworked enlarged heart. I can understand totally why you don't want to take Edoxoban and respect your decision. Heart specialists can give us advice but if medication makes us feel worse then we patients must all act as we think is best for us. The effects that some people suffer from after taking certain pills are horrendous.
Jean
Please don't let anecdotals here on strokes frighten you (or anyone else) into a decision on anticoagulation, however well meaning they are.
There are horrible anecdotal's about the risk of bleeding as well, two of which have happened to people I know about.
Rather go by what you and your doctor have agreed upon based on your individual case, also taking into consideration what you want because it really should be a shared decision.
Jim
Sorry you're feeling so rough. I came off Flecainide and Diltiazem, so similar to you with Bisoprolol. Important thing - don't try to do both at once! Both Bisoprolol and Flecainide will produce withdrawal symptoms and you'll want to know which is which. I didn't have too much effect from the Flecainide- just an increased HR and occasional tachycardia- but coming off the Diltiazem was horrible! You'll need proper advice and a timetable for titration- coming off slowly by reducing your dose. The good news is, you could take either if these meds as PiP- again on medical advice - if you did have a troublesome episode.
I no longer take either Flecainide pr Diltiazem and have the Flecainide as a PiP of needed.
Thank you that’s interesting.
What kind of aftershave do you have, how's your chads2vasc score?
Hi Electricblue 1
I completely sympathise with you on the drug front. I, along with many others I suspect, hate being dependent on daily drugs but for me, it’s a better option than uncontrolled AF (I’m in permanent AF) .
I suppose the only way you’ll know for sure is to try but I would suggest that, if you do decide to stop the beta blocker, you reduce very gradually. Personally I found Bisoprolol was fine to begin with but after about a year started giving me problems with chest pain and also affected my mood. I’m now on Carvedilol which appears to suit better, so maybe a change of beta blocker might be of help.
I wish you well, whatever you decide to do.
TC
Thank you, yes my mood is affected, it never used to be on it but all I do is feel low and cry. I might ask to change to another one.
Same as sueleen, yes I have, after a successful ablation...number 3. I have now been AF and meds free for 18 months.Before that though I was in AF for about 15 years without any medication. Not recommended. I had a terrible cardiologist, who discharged me saying "not to worry" and no harm will come to you.
I was in persistent AF for about a decade before developing heart failure. Despite enlarged atrium and so long in AF (18 years total at the time of last ablation) my new cardiologist and EP persisted with 3 ablations, for which I am extremely grateful.
This was completely uncontrolled high rate AF, so a different scenario. I think if the burden is low then there is a conversation to be had with your cardiologist. It's a personal decision.
gosh that is very interesting Electricblue1 awful previous cardiologist (surely not an EP) and a great current one who persisted with ablations until successful. I didn’t want an ablation, in the same way I didn’t want Apixiban, but very grateful to my EP. Keep well
hi just a quick note. I am unable to take beta blockers and one of the effects was to take me to a very dark place I’m on Adizem which is Diltiazem hydrochloride much better frame of mind.
Drugs have different effects on people. I felt like you do right now when I briefly took Digoxin, was in a daze, very emotional and cried. Had never ever felt that way before but my AF nurse told me I had to continue taking it if I wanted a cardioversion. You must report how your drugs are making you feel.
Jean
Everyone's different! Personally I found beta blockers were a living hell - especially Bisoprolol. I was put on Sotalol instead which had no effect on my permanent AF. At last, after 2 years, we agreed that they weren't working and I came off them - leaving beta blockers behind me - never again (hopefully). I have reduced to the absolute minimum - agree with everyone that anticoagulants should be continued and I also take Digoxin - just the one although they said more. So 3 tablets a day for AF and I'm feeling the best I have since it all started (and before it really started). To reiterate, we're all different, but there is never any obligation to take the drugs suggested and I feel we all know our own body. A little guided experimentation to find what's right for you must surely be the answer.
After my ablation September last year, I was told I could stop the Sotalol, a few months ago, which I did, very very slowly. Got to 20 mg from 80 mg and I started getting very high blood pressure. So I’m back on 40 mg of Sotalol and 5mg of a blood pressure medication, called Amlodipine. That has been reduced today to 2.5 mg, as it was lowering my BP too much at times and giving me side effects.
The older you get, the more medication they seem to throw at you.!
I had a friend who, after losing lots of weight and switching completely to naturopathy for his heart issues, died of a heart attack. Find a good doc and trust expertise.
I totally emphasize. The drugs made me miserable. Worst of the lot: amiodarone. I truly felt like the walking dead, with my bpm staying mostly in the 40’s. Yes, it “worked,” got me out of afib following a second failed ablation, but at what cost to my quality of life? I finally insisted on being taken off. That experience was pivotal in my determination to get off all drugs. But how?
My answer, working in partnership with my wonderful EP, was first a Watchman followed 8 months later by an A-V node ablation and pacemaker 6 weeks ago.
I am now drug free and feel like my normal self again.
I’d had it with the chemists and went with the electricians. I have not regretted it for a moment.
That’s my story. I don’t know if it helps. I wish you the best.
Hello Electricblue1. You are certainly not alone here, I too share your exact same thoughts. It's only been a year since being in the hospital diagnosed with afib, but my moods have changed so much, it's the thought of being where I am now, as compared to before afib. I am on 5 mg. of bisoprolol, along with 40 mgs. of furosemide and 20 mgs. of xarelto. I believe I'll be switching to a different kind of blood thinner because of the cost factor with xarelto, and I wish I had been better informed before ever taking it in the first place, I would have picked another thinner that I could afford. I was on a xarelto plan that paid for most of it, but only for a year, I should have known better. I could sign up possibly for another year, but there is just so much red tape involved that I just don't want to go through the endless steps involved, they don't make it easy, I'd rather just go on something else without that hassle. Waiting for doctors notes, writing hardship letters, verifying income, etc. All for what?? They have that same information from a year ago when I was put on the darn plan, nothing has changed. Really getting fed up with this managed health care stuff. I called the cardiologist clinic and left message with the nurse station to let them know I have about a month left of the thinner, and to get information on switching to something more affordable, they haven't called back!!
Hello, that all sounds like enormous hassle. Good luck to you.
I was cautious, just started taking half the dose, even if it meant breaking a pill in half.
As for natural remedies, I did give up most processed foods and sugar and sweeteners and eat lots of fruits, especially blueberries, and vegetables, like a big salad for dinner at night. This has worked well for me. I don't get afib any more, except in extreme situations, like when I had to take prednisone for a severe allergic reaction to Paxlovid recently. The Covid was pretty minor, it was these 2 drugs that did me in.
If the Covid was minor why did you take the Paxlovid?
I empathise
I am on another section for PMR but a few months ago I did exactly the same and GP agreed to a trial period of 3 months unfortunately I am now hospitalised and in big trouble so I guess I sympathise but would would not do it ever again.
Do what you want regarding your medication, but seek advice for your depression. It may have nothing to do with the medication. Self referral to Talking Therapies is free and you don’t need to involve your GP. There may be aspects of your life including living with a chronic condition that you may find difficult, emotionally. If you come off meds and you still feel low, then what? Take care.
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