Stopped Pills - Heart went back to sinus rh... - AF Association

AF Association
18,520 members22,495 posts

Stopped Pills - Heart went back to sinus rhythm

jeanjeannie50
jeanjeannie50
142 Replies

Time to confess what I've done. For most of you that know me you may remember that last year after having an infected tooth removed my heart went back to sinus rhythm. I thought I was cured for ever, but that wasn't to be.

My sinus rhythm lasted for six months, a length of time unheard of for me as I'd only been able to go 4-6 weeks without an attack of PAF for more years than I care to remember. My AF was diagnosed in 2005, but I feel I had it many years before then.

From last October my heart went back into AF, but this time it was constant AF. Although it was nowhere near as bad as my PAF attacks, I felt tired and could no longer do the long countryside rambles which I loved. I honestly thought that my heart would in time just return to sinus rhythm on it's own. Well it didn't and after 8 months I thought to myself, why am I taking Flecainide and Metoprolol if it's not stopping my AF? On the 23rd June I made a decision to stop these pills. At first my heart was a little wobbly having a few very short fast runs (lasting seconds), but I noticed after a few days that I was sleeping so much better.

On the 1st July I was having my breakfast and about to take my usual three vitamin pills, when I decided I wasn't going to take them either. That evening I had none of the short fast heart racing bouts and have been back in sinus rhythm and feeling perfectly well and full of life and energy since. I still take my Warfarin (always will) and Levothyroxine for an underactive thyroid - which you may remember was caused by my taking Amiodarone.

I have known for quite a while that some fillers in pills don't agree with me. I suspect the drugs and vitamin pills I was taking were in fact causing my permanent AF.

Now I'm not for one minute suggesting that any of you do what I have done. I don't want to be a bad influence and will take no responsibility for any of your actions should you choose to copy me. I do not advise you to do so. My AF was probably very different to yours.

My joy may well be short lived and it may well come back and I will tell you if it does. Meanwhile I'm going to enjoy life. Yippee!!!!!

Jean

142 Replies
oldestnewest
doodle68

[ quote Jean Well it didn't and after 8 months I thought to myself, why am I take Flecainide and Metoprolol if it's not stopping my AF? On the 23rd June I made a decision to stop these pills. At first my heart was a little wobbly having a few very short fast runs (lasting seconds), but I noticed after a few days that I was sleeping so much better.]

Jean :-) your actions have a logic, it's your body your decision what to do with it.

I sincerely hope the dreaded AF keeps away from your door and look forward to updates of a positive nature.

11 likes
Reply
jeanjeannie50

Hi Doodle, I Will certainly keep everyone informed of how I get on. I have to be honest and say that my third ablation 2 years ago may well have helped my AF improve too.

Jean

8 likes
Reply
knitted-bunting

Yes good luck Jean. You're right to think outside the box...

1 like
Reply
boundarywaterz

Glad to hear there is hope for a natural cure.Good for you! Take care.

1 like
Reply
boundarywaterz

Glad to hear there is hope for a natural cure.Good for you! Take care.

Reply
jennydog

Marvellous news!!!!

Last week I decided to stop taking statins and to increase my magnesium intake. Nothing has happened yet!

5 likes
Reply
jeanjeannie50

Hi Jenny, thank you. Well you can live in hope now that you've stopped your statins! I'm trying to think of the doctors name who did an alternative way of thinking video on cholesterol, hmm think it's John Bergman. Please report back if you have success.

Jean

2 likes
Reply
Heracleslion

statins are like marmite, they don't suit me at all, just the latest medical fad.

1 like
Reply
secondtry
secondtry
in reply to jennydog

Good move Jenny, the latest I read was that hi cholesterol is good (if you don't have other vascular co-morbidities) when you are older reducing the risk of dementia. I am no expert but I guess it is all to do with the brain needing good fats, contrary to public opinion.

4 likes
Reply
secondtry
secondtry
in reply to jennydog

Have just read again, statins are thought to deplete CoQ10, so you might want to take that supplement for a while. I think 200mgs/day helps me. If you want to check your level, BioLab or Medichecks do it by post around £50 from memory plus taking some blood if your GP surgery charge.

2 likes
Reply
DTS54
DTS54
in reply to jennydog

What type of magnesium are you taking and how much?

My ep recommended 400mg of magnesium from Costco once a day.

Im still on all my medications also

Reply
jennydog
jennydog
in reply to DTS54

I have bought Magnesium Citrate from Amazon. I was taking tablets from Home Bargains for £1 but they are Magnesium Oxide and absorption is only 10% apparently.

Reply
carneuny

Well done you Jean.

Fortune favours the brave 😀😀😀

4 likes
Reply
jeanjeannie50

Thank you Carneuny. Sometimes you just have to be brave, especially when you don't feel looked after by the medical professionals.

Jean

3 likes
Reply
Maura5

Good on you! I had a bad reaction to Apixaban in January, breathless, my already low blood pressure got lower and I couldn’t function anywhere near normal so my EP took me off it. I had an ablation this week and afterwards was put on riveraxaban for 6?weeks which is now starting to affect me in exactly the same way. I don’t have a good track record of tolerating meds so it is of no surprise to me. I won’t stop taking it until I get a reply from my EP as to whether I should or shouldn’t but I don’t agree that one size fits all and what works for one person necessarily works for another! I hate the way I feel at the moment!!!

2 likes
Reply
jeanjeannie50

Sorry to hear you are not feeling too good right now. Have you tried warfarin, I take it without any side effects. I certainly agree with you saying one size doesn't fit all. Thank goodness we have Sanjay Gupta to help us along the way with sensible advice.

Jean

4 likes
Reply
Maura5

No haven’t tried warfarin......yet.....watch this space x

2 likes
Reply
Picko
Picko
in reply to Maura5

I hate the way I feel too, I had been diagnosed PAF I had my second ablation in May and two weeks after I went into back into AF I was on holiday in the IOW, the cardiologist at the hospital tried all sorts of med to reduce the heart rate, after four days they decided my meds were not working so I was taken off: Flecainide, Diliazem XL and given Digoxin, Diltiazen (Tildiem Retard) and Apixaban. I now have a normal HR and have been for a month, which is good for me, I just wish I felt well, I am now short of breath, tired and just don't feel good, one good thing is I now sleep better. is it the mediation? I am not seeing a Cardiologist until November, it was September, I received a letter this morning saying my appointment had been cancelled and now rescheduled for November, I am worried anxious a little upset I really needed this appointment to put my mind at rest it is a long wait from May until November with no check up at all.

Reply
Maura5
Maura5
in reply to Picko

That does seem an awfully long time to wait, I think I would speak to my GP to see if they can help bring it forward if you explain how you are feeling. Good luck

Reply
jeanjeannie50
jeanjeannie50
in reply to Picko

I think it's quite normal after an ablation to feel as you are now after just two months. I've had three and certainly felt as you describe after having the first two. I know it's a pain but can you put up with it knowing it will hopefully get better with time. Or could you afford to see your EP privately, think it costs about 300 pounds (pound sign not working) and then go back to NHS?

Jean

Reply
Picko
Picko
in reply to jeanjeannie50

Thank you for you reply, all the very best with your medication changes 🤫

Reply
Emily007

Hello Jean, I am new to this site but have been following your posts with interest. I too am not good with medication. Could you possibly give me the name of the EP you saw because I may have to go down that route privately. Best wishes.

Reply
jeanjeannie50

My EP is Guy Haywood at Derriford Hospital in Plymouth. He doesn't know that I have stopped my tablets.

Jean

Reply
TenorJK
TenorJK
in reply to Maura5

I had bad reaction to Apixaban and Riveroxaban both started 2 weeks after I commenced taking them. I am now taking Warfarin and am fine, it’s a bit of a performance being checked every three weeks but at least but worth it. My side effects were that it affected my kidneys,bad back pain and water infections. Best of luck Jo

1 like
Reply
meadfoot

Good on yer Jean, very brave and it looks to be paying dividends in your case.

Having spent a morning with Jean over coffee the week before last in glorious Devon sunshine I can confirm she looks fabulous, amazingly well and energised. Whatever you are on I want some lol. X

6 likes
Reply
jeanjeannie50

Thank you my lovely friend, where would I be without you and your continuous support. Whisper - Have you banked the cheque I gave you yet? You know the one in payment for you saying nice things.

Jean x

4 likes
Reply
Mikee69

I was given conflicting advice from my GP and my Rhythm nurse regarding bisoprolol. It was causing my HR to be under 35 bpm in my sleep, i felt tired all the time had periods of SVT and loads of palpitations, my HR during the day was 85+

I decided to stop taking it, it took a good few weeks for my heart to stabilize as my HR did go up into the 90's for a period of time. my HR is now 63 at rest, and i have more energy. I have had fewer occurrences of SVT and fewer palpitations.

A few weeks ago I stupidly ran out of one of my blood pressure meds (Amlodipine) and didn't take it for a couple of days. My BP was ok and i felt fewer palpitations, I had had several weeks of atrial bigeminy (captured on my Kardia) .

I took the Amlodipine as soon as my prescription was available, and 2 hours later atrial bigeminy was back!!. this continued for several days and is a horrible arrhythmia, for me it was almost as bad as AF.

so, I've stopped taking it again, atrial bigeminy has gone, BP is ok, fewer palpitations no SVT in the last 3 weeks.

So, sometimes we can have a happy accident

7 likes
Reply
jeanjeannie50

Amazing Mike!!! so your story is much the same as mine. Have you watched Sanjay Gupta's video today on pills? Tomorrow he's doing another one re stopping pills.

Jean

3 likes
Reply
Mikee69

Very similar, that's why I had to post my story.

I watched it this morning, agree totally with what he says, and very much looking forward to hearing what he has to say in tomorrows episode

1 like
Reply
Finvola

Happy news jeanjeannie - long may you continue to be in NSR.

It seems to be a strange reaction from your heart - reinforces the idea that we are all different and our reactions are all different. I wonder what the cardiologists would make of it?

Whatever works - best wishes and well done for being brave enough to try it.

1 like
Reply
jeanjeannie50

Thank you Finvola. I have toyed with the idea of letting my EP know, but then think well I haven't seen him for over a year so he's perhaps written me off. Will give it some thought, he was never happy for me to be on a high dose of Flecainide.

Jean

Reply
pottypete1

Jean this is such good news however long it lasts and hopefully you have found a solution for you.

I am in a catch 22 situation. As you will be aware in the past 11 months I have had my best run of AF free life since it all started 27 years ago. However, I have still been taking my Flecainide although it was reduced from 150Mg x 2 per day to 100Mg x 2 per day. Warfarin I continue too.

Because I am stable (apart from Ectopics) I am reluctant to stop taking the tablets which have been part of my life for all these years. I think that if I was in permanent AF I would follow your lead it seems logical to me.

I will see my EP in December and will once again talk about this but the last time I stopped which was about 6 years ago I was back in AF after 3 days. Things are different now for me and I am not sure what is best. Status Quo seems to be the best bet right now.

I truly hope you now stay AF free Flecainide is one of those double edged swords that both prevents and causes AF.

Best wishes

Pete

5 likes
Reply
jeanjeannie50

You have had a long and traumatic time Pete with all your ablations. So your situation is very different to mine. If you remember, last year after 6 months in sinus rhythm I gradually cut down my Flec with a view to stopping it completely and my AF came back. I bitterly regretted not leaving well alone, so I would say to you (for now) stay on it.

Jean

2 likes
Reply
MisUse

Very interesting. I am in permanent AF, and my underactive thyroid, like you was caused by amiodorone. I am taking Tildiem and digoxin for my heart rate. Also take BP tabs, statins, HRT and Warfarin. The arrhythmia clinic at the Brompton don't want to see me at clinic unless I am worried. AF is irregularly irregular, as they say, but not overly fast. I have a very leaky valve which the Brompton are going to replace, and severe respiratory problems due to kyphoscoliosis. Everything is fairly settled, but have thought about re thinking my meds, but to be honest, I'm too scared! Hope your AF stays away from you xx

Reply
jeanjeannie50

Thank you for your reply MisUse. I certainly wouldn't consider altering any of your medication until quite a while after you have your leaky valve repaired. Then do it under guidance from your GP or cardiologist. Afraid I don't know what kyphoscoliosis is, but will look it up.

I only have an underactive thyroid and nothing else at the moment. I felt so much better after being prescribed Levothyroxine and had been putting my extreme tiredness down to my AF.

Jean

Reply
MisUse

Hi Jean it's a form of curvature of spine. Going to stick with my meds until well after valve is done. Everything is very stable, so fairly happy at moment, although this heat, which I love, has finally got to me and breathing awful. Started course of steroids this morning. Keep well. Jean x

1 like
Reply
Nugger
Nugger
in reply to MisUse

How long was you on amioderone,I'm on it too.

Reply
Hidden
Hidden

Pleased and interested to hear this Jean. I stopped taking daily Bisoprolol because it did not make a noticeable difference to my heart rate or incidence of AF. Have also declined digoxin and diltiazem in past because of awful effects. Sometimes we carry on taking the usual drugs without thinking whether they are actually helping .

Doubtless you will keep us informed how things progress.

Sandra

3 likes
Reply
jeanjeannie50
jeanjeannie50
in reply to Hidden

Thank you Sandra. Yes, I agree, we really have to decide whether drugs are helping us or not and not just take them regardless. I will certainly keep everyone informed of how I progress. I half expect to be back in AF at some stage. You know thinking about it, my AF only came back last after I started taking 3 different types of vitamin tablets. Vitamin B complex, B12 and D3. I too refused Digoxin a few years ago after it made me feel dazed and weepy. Weepy is not me!!

Jean

1 like
Reply
Hidden
Hidden
in reply to jeanjeannie50

When you think about it....whats the point of taking antiarrhthmics if you are in permanent AF? I'm sure someone will tell me.....

2 likes
Reply
jeanjeannie50
jeanjeannie50
in reply to Hidden

Well I guess that sometimes they suppress the symptoms. I did wonder when I stopped mine whether I'd get a severe AF attack and end up in hospital like I used to.

Reply
Nugger
Nugger
in reply to Hidden

Common sense I would think lol

Reply
Hidden
Hidden
in reply to Nugger

Well, no. If you are in permanent AF then the antiarrhythmics are not working. Why keep on taking for possibly years on end a very potent drug with numerous side effects when it is proved to be ineffective.

1 like
Reply
Nugger
Nugger
in reply to Hidden

That's what I said,common sense not to take them,save them up for pip

Reply
Hidden
Hidden
in reply to Nugger

Sorry Nugger....misinterpretation of your reply !

Reply
JaneFinn

Oh how WONDERFUL, Jean! 🎉

Enjoy your new lease of life! Hoping all arrhythmia is soon a dim and distant memory for you ❤️

Reply
jeanjeannie50

Thank you Jane, I really hope it will be that way. Right now I feel so well!

Jean

3 likes
Reply
JaneFinn

I am literally whooping in happiness for you! 🌟

2 likes
Reply
IanMK

Good for you. I hope it continues.

Medicine isn’t an exact science and we know in this forum that people react differently to different drugs. I hope to be able to come off some of my HF drugs if and when my cardiomyopathy improves, which I hope it will if I can get my ventricle rhythm right. I don’t like being dependent on medicines because of the potential of unknown adverse effects (as you have discovered). I think it’s important to be able to discuss this with - and have confidence in - the people responsible for one’s treatment.

2 likes
Reply
jeanjeannie50
jeanjeannie50
in reply to IanMK

You're certainly right Ian. I really hope things eventually turn out better for you too. You know I've been quite surprised at everyone's positive responses to my post. I thought at least some would have told me how silly I was.

Jean

1 like
Reply
IanMK
IanMK
in reply to jeanjeannie50

I decided to stop one of the meds I was on for my prostate about 11 years ago. I was prescribed it because it was considered best practice. Something ‘didn’t quite feel right’ at the time but it may not have had anything at all to do with the medication, of course. I had no adverse effects from stopping that medication.

QED

Reply
jeanjeannie50
jeanjeannie50
in reply to IanMK

Hmm, yes these medics love putting us on as many pills as they can. I refused statins as my cholesterol is not overly high, but that was just as a precaution too! What does your QED mean?

Jean

1 like
Reply
IanMK
IanMK
in reply to jeanjeannie50

Quod erat demonstrandum - Colloquially: “There’s your proof”

1 like
Reply
doodle68

Jean have you told your Doctor yet :-) some have a way of speaking to you as though you are a silly child who doesn't know what they are talking about.

2 likes
Reply
jeanjeannie50

Mine wouldn't do that Doodle, he knows how I feel about taking any tablets and I think he would agree with me that its good I can do without them. I would take them now as a PIP if the need arose. Yes, I've still got a bit of the silly child in me anyway. I remember sitting on a beach and a group of kids were in a dinghy having great fun pretending there were sharks, I wanted to play at that too! When it snowed earlier in the year I longed for the little girl who lives opposite me to come out, so I could get one of my sledges out and pull her along.

4 likes
Reply
doodle68

and why not Jean :-)

1 like
Reply
Nugger

Did same to me,half the uk must be on statins,think the practice gets a kick back

Reply
Rebma
Rebma
in reply to jeanjeannie50

How long and what strength we’re you on amolodione?

Reply
jeanjeannie50
jeanjeannie50
in reply to Rebma

I was on 200mg tablets. Took one three times a day for seven days, one twice a day for seven days, then one daily. Think I took them for about 7 months pre second ablation, but had also taken them briefly at an earlier date pre first ablation which I can't remember much about now. Probably for 6 or 7 months then.

Jean

Reply
HiddenThis reply has been deleted
Buffafly

Long may it last! I hate taking pills of any kind so usually take the minimum helpful dose. This reminds me of something I have often thought, which is that possibly there may be more to doctors' seeming reluctance to diagnose arrhythmia. If your 'heart doing funny things' or episodes of 'feeling off' are given a label patients expect a cure or at least a treatment. This could mean you taking some fairly heavy duty medication regularly for many years 'just in case'. One of my daughters definitely has some kind of arrhythmia now and again but I haven't urged her to pursue it because I'm not sure that an investigation wouldn't cause more harm than good. If you have an episode that takes you to A&E, especially if more than one then clearly you need treatment, but if you are merely uncomfortable (and I know that description will make a !ot of people cross) then maybe addressing lifestyle issues first is the better way, with anticoagulation if necessary. I know that goes against the 'quick ear!y fix' method but I feel we don't know yet how that is going to work out in the long run. Still a long way to go in research I think.

4 likes
Reply
IanMK
IanMK
in reply to Buffafly

My daughter is the same. Is it arrhythmia or is it anxiety? (Alternatively: chicken or egg?)

2 likes
Reply
jeanjeannie50

Thank you Buffafly. I have a daughter the same as yours, hers only happens when she's anxious and it can make her pass out. Being stuck with a boring person can make her feel ill too. When she was at primary school we had to ask that she didn't attend morning assembly as that made her feel sick. The power of the mind ayh! So much more to health than we are aware of.

1 like
Reply
secondtry
secondtry
in reply to Buffafly

Totally agree Buffafly - enjoy TODAY!

Reply
Vonnieruth

So glad your feeling better Long may it last Jeannie

Reply
jeanjeannie50

Thank you Vonnie.

Reply
Vonnieruth

Such strong minded woman I admire you

Reply
jeanjeannie50

I think my third ablation 2 years ago really helped too. My EP had a piece of equipment which he'd designed with his Registrar. It went down the throat to the heart and then he could test where the abnormal rhythms were coming from.

Reply
Vonnieruth

You had. That done then

Reply
jeanjeannie50

Yes, I did and it was before I had the general anaesthetic and it was horrible!!!

Reply
Vonnieruth

Ohh I bet it wasI couldn't have done that

1 like
Reply
Hoski

That is very exciting news! Ive had tinnitis for decades, in my 50's I had all my teeth removed and the tinnitis mysteriously disappeared. Unfortunately, months later it found its way back. No one could really explain any of it. Prayers that your a fib is gone forever🌟

Reply
jeanjeannie50
jeanjeannie50
in reply to Hoski

Ooh Hoski it would be so lovely if it never came back! I can't somehow see myself being that lucky, though I'll live in hope. Going to get my passport renewed and find out about holiday insurance, feel alive again. It's wonderful!!!

4 likes
Reply
FlapJack

So you’ve eventually spilled the beanzz! Fantastic outcome so far Jean and fingers crossed it stays that way. It’s funny how something always pops up when you feel the urge take the plunge with medication. I was keen to see what would happen if I stopped Diltiazem and when I was feeling brave, I got the details about my cryoablation in 2016 and chickened out. Similar situation just before Christmas then I started getting the odd episode. Now my second is due at the end of August I think it would be prudent to carry on for the moment.

You have always been a great help to all the folk in the forum so it’s not surprising that we are all willing you on to stay well and free from some of your medication......best wishes, John

3 likes
Reply
jeanjeannie50

Thank you John, I appreciate your kind words. Yes, my secret is out now.

Zip-a-dee-doo-dah, zip-a-dee-ay

My, oh, my, what a wonderful day

Plenty of sunshine headin' my way

Zip-a-dee-doo-dah, zip-a-dee-ay!

Jean

3 likes
Reply
Smokie2D

Good luck to you! As the medical staff keep saying to me " you know your own body best".

My favourite medic said "medicine is a poison with some useful side affects and not to be taken lightly". He also said "each patient reacts diffrently to anything they take so a hard and fast rule can not be made". He also roared against " idiots poping herbal remedies, vitamins, alcohol and dodgy food" as he was of an opinion that everything affects your health. All in all he often gave conflicting signals!

2 likes
Reply
jeanjeannie50

Your favourite medic sounds like he knows what he's talking about, Smokie. Yes, I'm wondering now just how wise it is to take what we call 'health pills'. I don't think the ones I was taking were keeping me healthy, but giving runs of AF instead.

Thank you for your good wishes.

Jean

Reply
Smokie2D

My fav medic does exist but they way other docs keep asking "WHO told you that?" made me keep his name quiet!

1 like
Reply
higgy52

well done,

many people feel like doing the same,

Good luck

1 like
Reply
jeanjeannie50

Thank you for your good wishes Higgy. Yes, we all hate taking pills, but sometimes it's just too scary to stop them. I think that now just happened to be the right time for me.

Jean

1 like
Reply
scotcitz

Thanks for sharing your experience! I think what comes out of this is that listening to your body is good. There's some stuff -- like blood thinners -- that I think you need to trust the science unless obviously you get a bleed etc (my cardiology is fond of saying "we can fix a bleed but not a clot" and I'm thinking, uh, you really need a new slogan ... not loving that statement). And as you say those are still on the list! Anyway, if you're in constant afib and you're taking the pills and they're not doing anything except possibly making you ill it makes perfect sense to stop taking them. I guess doctors can't tell us this ... but mostly glad you feel better and got your life back.

2 likes
Reply
jeanjeannie50

Thank you for your response Scotcitz. Yes, we certainly have to listen to our bodies. Did you read Mikee69's post. It sounds like he had a similar thing with tablets being the cause of health problems.

Reply
cassie46

Hi Jean - I have been thinking of doing the same. As I am in permanent AF I am not sure what the pills are doing for me. I think I would probably half my doses of Nebivolol and Ramipril, can not take half of Diltiazem as it's a capsule and closely monitor my HR and blood pressure and see what happens and take it from there. It may be that I may need the Ramipril because I have HF as well but even if I came off the Nebivolol I might feel better, can always go back on them if it did not work out. As you know my only option now is pace and ablate, EP said if I go ahead with this I would be able to come off the medications except for Rivaroxaban, even he said that the pills may be causing how I feel. Hope you continue to improve.

Cassie

1 like
Reply
jeanjeannie50

Morning Cassie

When I first stopped my meds I did it immediately and my heart ran wild a few times daily, but for very short periods (minutes). I think it needed to find it's own pace again. Then it was stopping my 'vitamin pills' that calmed it down right away. I do wonder about all the different fillers in tablets. When taking just one or two the body can probably cope, but including my vitamin ones I was taking 7 daily.

I can only say I feel full of life and energy again, sleeping well now too.

I don't want to encourage anyone to do the same as me, as of course we are all so different. I was once told by an AF nurse that I had heart failure, but have not heard it from anyone else.

Jean

1 like
Reply
Tyson4ever

Jean, are you the Jean that Sanjay mentions in his video pills pills and more pills?😊

Reply
jeanjeannie50

Yes, I'm famous now!!!!

1 like
Reply
wilsond

Im going to have to look that video up! Do you google it?

1 like
Reply
hock217

I hope you will feel well with the changes made. I watched a webinar earlier by Dr Rawlins. Will post link. I agree with his premise. My guess is you will as well.

1 like
Reply
jeanjeannie50

Thank you Hock, will look out for the webinar.

Jean

Reply
hock217

Dr Bill Rawls (US).....repairing immune systems etc.

1 like
Reply
Barb1

Very brave move. Does your consultant know yet?! Stopping medication stops AF.....think there's a research paper needed there!

1 like
Reply
jeanjeannie50
jeanjeannie50
in reply to Barb1

No, I haven't told anyone medical, don't think they'll be that interested with the busy lives they have. I do think about telling my AF nurse, may just wait a few more weeks.

Jean

1 like
Reply
Hidden
Hidden

Well done Jean for having the nerve to do this. I do hope it works for you. I only wish I had your courage. I am still dithering over my change to Nebivolol although I have the drug now, in case it causes an episode!😯

1 like
Reply
jeanjeannie50
jeanjeannie50
in reply to Hidden

Thank you. I was still in low paced AF despite taking pills and it made me tire quickly. I wont hesitate to take them again should my heart kick off big style. It's so lovely to feel normal again!!!

Jean

Reply
Hidden
Hidden

P.S. don't know who I am now as Kineton38 seems to pre dominate!!😟😯

1 like
Reply
Hidden
Hidden

Brilliant well done!!

1 like
Reply
jeanjeannie50
jeanjeannie50
in reply to Hidden

Thank you, Scoobisu.

Reply
Pam296

Wow! So hope it lasts for you x

1 like
Reply
jeanjeannie50

Thank you. I hope it lasts too, but three weeks totally AF free now. So lovely to feel a normal person again. I'm out of that drugged haze and feel alive.

Jean

1 like
Reply
Hidden
Hidden

Wow Jean, brilliant, I feel same, they put me on bisoprolol in hospital when last there when I had that bug, 5mg and even though it made minimal difference to me they insisted it woukd help made me breathless etc so I reduced it myself to 2.5 and told gp when I did, felt loads better tbh and now doubt the 2.5 actually helps as I still get high pulse and afib occurring. I take vitamins b12 and d3 etc same, now wondering if they actually help at all, got really bad chest infection again full of cold and the usually Afib and high pulse. Last appt they gave amioderone which I haven't taken after reading side effects, just seems they like to shove more and more tablets when they sometimes don't seem to help much anyway, well done though Jean enjoy a holiday in sinus be great

1 like
Reply
jeanjeannie50
jeanjeannie50
in reply to Hidden

Ah so you're taking similar vitamins! I'd certainly stop them and get your vitamins through food. My D3 is in liquid form, so I may well try taking that again, but anything which has fillers not unless I really have to. Have just thought, I was taking Vitamin C too. Still take my warfarin and also levothyroxine for thyroid.

Jean

1 like
Reply
Hidden
Hidden
in reply to jeanjeannie50

Gonna give it a go Jean, think natural way is best for vit intake like you say, positive stuff and good news though, made me smile anyway through this stinker of a cold this morning

1 like
Reply
bennie06

Self mediication is a very dangerous route to go and should not be encouraged and undertaken only after discussion with your doctor.

Reply
jeanjeannie50

Hi Bennie

Taking medication that causes health problems is a dangerous route too. Especially when it's your heart they're having an effect on. Listen to cardiologist Sanjay Gupta's post of yesterday. My tablets were causing my faulty heartbeat. I stopped taking them and immediately my heart went back into a normal rhythm. That can only be a good thing for me.

If you read my post at the top of this page you will see I am not recommending anyone else do this. What I did worked for me and my form of AF. I've had three ablations and been told by my EP that there was no more they could do for me, there's no saying at all that it would work for others. Most others need to take their pills, as I did when diagnosed 13 years ago. If my AF should come back dramatically I will be back on my Flecainide and Metoprolol right away.

Jean

2 likes
Reply
bennie06

There will be some vulnerable people on this forum who may be easily led by overly "enthusiastic" posts. Any changes to medication should, in my opinion be driven in consultation with a medical professional, not by social media.

1 like
Reply
bennie06

I have listened to his video where he says "in consultation with your doctor". I also note that he uses social media for self promotion.. ..

1 like
Reply
wilsond

Its okay,seen the link on here now!

Reply
jeanjeannie50

It's in a previous post from yesterday on this forum.

Reply
Fastbeat

Good on you, everyone must make their own decisions, pleased it's working for you and long may it last.

Jane

1 like
Reply
jeanjeannie50

Thank you Jane.

Yes, we are all so different in our physical set up and also different in respect of our AF symptoms and the treatment (ablations) we have had.

Jean

Reply
baba

Well done, delighted for you, long live NSR!

So the AF stopped when you stopped the vitamins?

1 like
Reply
jeanjeannie50
jeanjeannie50
in reply to baba

The constant AF stopped after I decided not to take my Flec and Metoprolol (beta blocker), but I was getting a few little fast runs lasting seconds about twice daily. Then I stopped my vitamin pills which I take with breakfast, by that evening my heart was in perfect rhythm and has stayed that way.

Jean

Reply
baba
baba
in reply to jeanjeannie50

Thank you.

Reply
Janith

I, too, think that the meds are worse than the actual illness. I am seriously thinking of stopping the meds ... but l am leaving for Europe in one week. I will deal with it upon my return. I don’t want to experiment when away. The side effects are bad! Good luck!

1 like
Reply
jeanjeannie50

Thank you for your good luck wishes Janith. What parts of Europe are you visiting ? Are you coming to the UK? I had constant AF so had nothing to lose by stopping the pills and I certainly wouldn't hesitate to take them as a PIP if needed.

Jean

Reply
Janith

I am going to Belgrade. We have two properties in Serbia. We may take a few small trips to Budapest, Rome, Dubrovnik, no U.K. Although l have been there in the past. I wish you happiness during your new adventure. I might go that route as well when l return. I hate taking prescription meds.

I am joining my husband. He is already there. So l will fly from Austin to New York to Belgrade. ALONE! Say a little prayer for me. I am a terrified flyer! 😚. Jan

Ps ... my gp gave me tranquilizers to take during the flight but l read the side effects last evening ... in the garbage they went. No way!

1 like
Reply
jeanjeannie50

Hi Janith

I've flown from England to Texas twice on my own and once with my younger sister, you will be fine. It makes you feel strong, that the world's your oyster and you can travel anywhere you want. My eldest sister lives in Dallas, she used to live in Austin and one of her sons still does.

I hate prescription drugs too and it's very rare for me to take any type of pain killer either.

Have a nice break, is it a holiday for you both or will your husband still be working?

Jean

Reply
Janith

Holiday ... but he mixes both ... he is a PhD power systems engineer ... so brilliant ... l can’t change a lightbulb!! He consults when we are in Serbia. (Serbian men are sooooo handsome! Really tall!). Thank you for the kind words. Today l feel very powerful!! I love feeling strong and healthy! That’s why that afib diagnosis was so terrifying. My cardiologist thinks it’s nothing. He says “look at your ekg results” ... “your heart is perfect” ... l think, oh really, then why do l have PAF? But slowly l am forgetting about it. Thank you again for the kind words. I’m all packed and kind of excited!

1 like
Reply
Bmwpaul1971

You know yr own body so good for you. I have decided to reduce my bisoprolol as putting it up made my ectopics worse so I am going the other way. Got nothing to lose, they don't control them anyway lol

1 like
Reply
jeanjeannie50

Hope you feel better soon on your reduced dose. Yes, we're the ones that know our bodies. I feel so well, it's unbelievable.

Reply
Plantwords

I was wondering what happened to your AF after the dental extraction. I think this is quite significant that you remained in NSR that long. I also think it significant that going off the meds and supplements has had an impact. I am struck by the length of the remission. If it was a few days respite I'd think the NSR was just coincidental but I hope you continue to keep everyone posted on this. Thanks and everyday without AF is a great day!

Steven

1 like
Reply
jeanjeannie50

Thanks for your interest Steven. Yes, will post and let everyone know should anything new occur.

Jean

Reply
Ianc2

No excuses now - on your bike!

1 like
Reply
12cupcakes

So happy for you. Hope you stay in NSR

1 like
Reply
jeanjeannie50

Thank you.

Reply
Pennie1958

Fair play, as lots of people have said you know your own body. When I was first diagnosed I was put in bisoprolol, it lowered my hr to 48-52.... leaving me slightly breathless. When I went into AF next time my HR was only 120 then came down to 98 where it stayed until a failed CV. Then put on amiodarone which did nothing to change my HR but the last CV was successful. I had a permanent headache from taking it and very swollen legs. Two days after the CV I stopped both as I still felt lethargic and breathless. I can now do my housework and do the four flights of stairs to my flat without having to stop. Back to work next week after nearly six months off and I can’t wait. I know I’ve made the right decision as before the diagnosis when in AF I never felt so breathless and lethargic as I did taking the medication. I may well end up paying for this but I’m feeling great now.

2 likes
Reply
jeanjeannie50

It's certainly a horrible feeling in AF. Hope you continue getting on well now. Good news.

1 like
Reply
RexH

Good on you, great news 😊

1 like
Reply
KMRobbo

Well done you , hope it lasts!

1 like
Reply
jeanjeannie50

Thank you. I've made a month with no heart pills,so am really hoping I'll be ok.

Reply
KMRobbo

I am hoping so too, everyone should get off the drugs they don't need! The difficulties, as you know, is deciding what you don't need, and then following through with your decision. Looks like you did both. So we'll done again.

1 like
Reply
jeanjeannie50

I'd also heard that Flecainide could cause heart problems as well as cure them. My heart only went into constant AF when I started taking them.

Reply
cbsrbpm

This is great to hear Jean, I hope it never ever ever returns. Good luck you obviously made the right decision 👍🤞

1 like
Reply
dartmoorlass

Interesting development jeanjeannie50 and not so way-out as some may think. On Friday my GP and I were discussing medication and side effects - I've had many nasty side effects with various medications. She has a special interest in the subject, and the gist of the conversation agreed with your actions. Some medications, such as anticoagulants, are essential to those of us with AF, but an individual patient must weigh up possible benefit of i.e., bisoprolol et al and balance that with the effects on day-to-day life. If a 'normal' life is impossible perhaps we should try putting them to one side. Individuals have different responses to each medication - as we read on this forum, a one-size-fits-all certainly doesn't apply. She emphasised that some medications are absolutely vital, which of course, we all appreciate on this site. I've been slowly reducing my beta blockers because of the bad effects and take one every third day. My BP and HR is ok and with her approval will decrease further, carefully monitoring as I go. Good luck with your action - do let us know how it goes.

Reply
jeanjeannie50

I'll certainly let everyone know how I get on.

I have heard of Flecainide causing rather then helping with AF. Yes, I think it's right to weigh everything up and make a decision on your personal situation. It certainly sounds like you have a forward thinking GP. I'm sure my third ablation two years ago has helped me get to the stage I'm at now too. Or is it my healthier diet!!!!

Jean

Reply
Trish5

Hi Jean,

I haven't been on the site for ages and I was just about to write to you to ask if you were in SR and ask how you were feeling.

I'm sorry it came back, was convinced that it had gone for good. But I'm happy you are so up beat and you are feeling well. You made the right decision .... You know how AF works and you listen to your body, you know how that works too, so good for you.

Trish x

1 like
Reply
Holeinmyheart

I had my first ever Ablation ever July 30, and the Doctor made a mistake and made a hole in my heart! Not a fun trip! I am still waiting for my heart rate to slow down and my bp. to quit going all over the place. I have a pacemaker that is to keep my heart rate above 60 but it never gets down there! Will I ever be normal again?

Holeinmyheart

Reply
jeanjeannie50

I'm sorry to hear that, what a dreadful experience for you!

I'm going towards the idea that people with AF should always try the change of diet to wholefoods route before considering an ablation. At the same time cutting out all foods with artificial additives and losing some weight if needed. I certainly wish I'd tried that before starting out and having my three ablations. The trouble is people are generally booked for an ablation before they ask for advice. It's difficult for any person to put forward the idea of not having one, if they did and the person had a stroke they would be blamed.

Yes, I think things will improve for you as it's still early days after your ablation and many people experience a high heart rate afterwards for many months.

Wishing you well.

Jean

Reply
Holeinmyheart

Thanks Jean, I have been watching my food for a couple of years and reading labels, but not always true to this. Must do better! I have too many other things wrong with me I am never sure which one is the culprit which day! Lol. Thanks again. By the way, I am a Jean also.

1 like
Reply

You may also like...