Atrial fibrillation effects on life. - British Heart Fou...

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Atrial fibrillation effects on life.

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I was taken to A&E with a too fast heart beat. They kept me overnight said I had atrial fibrillation, gave me aspirin and beta blockers and sent me home. I couldn't do anything the beta blockers were knocking me out so much. I went to my doctor who swapped me to calcium channel blockers and set me for an echocardiogram. I dug my heels in and asked for a referral to a cardiologist. I am not prepared to just go away and take pills, I want to know what's going on. I am worried all kinds of things are wrong with my heart (as you do) and I just want someone who knows their stuff to tell me exactly what is wrong and what can/can't be done. I have after 2 cancellations got an appointment with a cardiologist now, so hopefully will get my questions answered. I am so fed up I can't walk far, can't carry anything and if I do anything remotely physical it makes me puff. If this is the rest of my life I've had enough now! How can I have gone straight from being perfectly ok to this? Has this happened to others?

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Everyone's story is different and I know that there are others on this forum better than me in saying the right things

When I had vascular surgery on my leg the protruding vein was there for all to see and the practice nurse, the gp and the hospital couldn't get their hands on me fast enough for the requisite surgery ("tying and stripping") which has proved effective and long lasting

In the process I was told that I have weak valves in the groin leading to swollen legs and ankles (Oedema)

With the heart it is all different as the veins and arteries are on the inside

The important thing therefore is to submit to all the various tests-ECT (electrocardiogram) echo cardiogram, tilt test, perfusion scan, angiogram, blood tests, xrays whatever

Then they weigh you, take your temperature, blood pressure and pulse rate

Then all the talk about procedures-cardioversion to rectify the heart beat rate, ablation to open arteries by stents, pacemakers and by passes

On to medication-beta blockers, nitrates, statins, blood thinners and anti-coagulants and the rest

Then there is all the personnel So far I have been to 3 hospitals-Kingston, the Royal Brompton and St George's Tooting and my case is being referred to St Thomas' for a further opinion

Next Friday I have my second meeting with a consultant cardiac surgeon at St George's and I am trying to get an answer to the side effects of medication and hope to avoid an (un-necessary) colorectal procedure

Basically I am ok on medication but I am caught up in the system and I have never seen the image from the angiogram showing the extent of the artery blockage or the result of the second echo cardiogram showing more or less the same thing

Personally I cannot tolerate aspirin which caused me stomach bleeding, but I am on betablockers and 4 other tablets

If they kept you in overnight at hospital (which is more than I had) it is surprising you did not see a consultant at that stage

When you do don't expect too much -mine simply took my pulse and listened to my heart with his stethoscope, looked at my ankles, asked me my age and for details of my medication

I am afraid this may sound awful but they are just as human as we are and all you can do is to try to understand and stick with the system

You should get a lot of good advice and support on this forum and you will feel that you are not alone

Hi

Like you I thought I was perfectly fine until a pre op test produced a dodgy egg .I was sent for an echo and then referred to a Cardiologist.On medication now and I am really grateful for all the help I am getting .Don't know what the future holds but am sure these guys know what they are doing .Try not to worry it won't help it's hard but just have to be a patient patient .Whatever you do don't Google stuff .This forum is lovely really nice folk on here and good advice .

Good luck with your appointment keep us posted x

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Could be a variety of things making you feel so fatigued. If it's the meds, that may get better. Sometimes it takes a month or 6 wks to adjust to the medications. When I started a beta blocker at a very small dose it totally wiped me out. A year later they needed to up the dose and thankfully, I felt no change regarding tiredness. I think it just took awhile for my body( and mind) to adapt

You have done the right thing in pushing to see a cardiologist. I am a constant broken record on this forum by saying that in the modern NHS you have to really make sure you fight to get the right treatment. The cardiologist should answer your questions. I don't have AF but another condition that causes tachycardia. However, I know that AF is a common condition which certainly needs to be treated. Another user mentioned the meds causing symptoms above and that is very true...for the first week on beta blockers I had a tight chest and couldn't lay flat in bed but it ironed itself out and I have been fine since. Good luck and keep posting your queries, as this is a fantastic forum.

Hi

Like you I was taken to A&E with a rapid heartbeat and whilst there waiting to be seen by a consultant suffered what the deemed to be a mini stroke in so far as I was mid conversation and suddenly my words weren’t coming out as I thought I was saying them and started talking mumbojumbo.

To cut a long story short I was kept in over night and was given Bisoprolol to slow down my heartbeat and Apixaban to thin my blood so that clots couldn’t form.

I stuck it the Bisoprolol for 6 months because I believed I was lucky to be taking something that was keeping me from having a stroke but like you I got to the stage where I could barely climb a few stairs, kept falling asleep if I sat down and my Raynauds diseases was 100 times worse. I too asked to be referred a cardiologist but dr insisted there was no need and that my condition was quite common.

However I did go to my GP and explained I couldn’t get on with the Bisoprolol and with no quibble, she went on line and had an Internet discussion apparently with a cardiologist who suggested that I should be swapped from Bisoprolol to Adizem (diltiazem hydrochloride) and I have never looked back. I can walk long distances again, don’t have trouble breathing and can climb stairs with no problems.

When collecting my medication from the chemist he kindly explained the difference between two medications and said that Bisoprolol was the NHS go to medication because it’s cheap but it was slowing my heart rate down so much that my blood pressure dropped so low I had to stop taking amapril I had been prescribed for 35 years.

Hope this helps. Sometimes asking a chemist what medications are supposed to do is very helpful and they know more about them than drs.

Hi AF,

Yours is a very interesting post for me. Among other things I have AF and have been in permanent AF for many years. I was prescribed dilitiazem and this brought my fast heart rate under control and I was fine for many years and experienced no noticeable side-effects.

However recently, November 2018, I was diagnosed with a thoracic aortic pseudo aneurysm and had to have my aortic root replaced with a synthetic one including an integral mechanical aortic valve (I already had a mechanical aortic valve and obviously this replaced that) plus they replaced the hemi-arch with a synthetic version.

Post op they decided that I should be taking 5mgs bisoprolol and not dilitiazem to control my heart rate. I am now recovering well from the surgery but I am noticing what I believe to be the side-effects of the bisoprolol, I’m tired and fatigued all the time and drop off to sleep when I’d rather not, I sometimes have trouble sleeping at night (how does that work!) but the major issue is that I have no energy or motivation to do anything and I’ve gone from being a very up-beat sort of chap to feeling low all the time.

This week I went for assessment for cardiac rehab. The specialist cardiac nurse said that the low mood and lack of motivation is common with bisoprolol. She suggested splitting the dose in two and taking 2.5mg in the morning and 2.5mg at night and monitoring my heart rate and BP; that might improve my low mood and lack of get up and go. She also mentioned maybe reducing the dose and again monitoring the effect on heart rate and BP. If that didn’t resolve my issues she said I should go to my GP and discuss going back to dilitiazem.

So I’ve now ordered a decent BP meter (one that is supposed to be able to cope with AF) and I intend to monitor my heart rate and BP for a week whilst keeping my drug regime the same, to get a starting point. Then I’ll try splitting the dose into two 2.5mg doses morning and evening, then reduce to two 1.25mg doses, then maybe one 1.25mg dose and see what happens.

If things don’t improve then I’ll go back to the GP/cardiologist and discuss it further. I know that bisoprolol is reputed to be beneficial with regards to aneurysms but it’s based on statistically dodgy grounds since the sample sizes were very small and there have been few studies to support this. Once I’ve built my case I will be pressing very hard to go back to dilitiazem.

So your post is very relevant to my situation, thank you and it's heartening in some way because it reassures me that I’m not alone in feeling this way and that returning to dilitiazem might yield a happier life.

Regards,

Phil.

Keep pestering drs Bill. It’s your body not theirs. It is my belief that Bisoprolol is designed to slow your heart beat right down and which means the oxygenated blood pumping round your body arrives much later than it would if you weren’t taking it consequently when you need the oxygenated blood to walk and go about your daily life your other muscles struggle for oxygen but then I’m not a medical person, have worked it out with research, the AF forum, my nephew being a dr who got so fed up with the restrictions placed on him for treating fellow human beings he has opted out of the medical profession and gone alternative and the information given to me by a very newly qualified pharmacist.

I’m 69 female and usually when confronted with a medical or authorative person who looks as though they should be in school I’ve tended to think ‘what do they know’ but I take it all back and have realised that it’s the youngsters who do know...at the moment, until the medical profession hierarchy bring them down with their strict rules and regs. From what I have learned from my nephew the medical profession is as corrupt as any other money making professional organisation like dentistry. They know we know little so try to blind us with their kind of science.

You do well to pick up as much as you can from these forums and do your own research. The AF forum have a very good video that shows exactly what is happening with your heart when in AF. I found that very helpful and my philosophy now is to just keep moving!!

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Hidden in reply to AFTadcaster

I never had high blood pressure to start with so maybe that way why I was awful on the bisoporol.

Poppy6b
Poppy6b in reply to Hidden

I was the same. You just have to keep pushing to get the right treatment

Torvi
Torvi in reply to Hidden

I have extremely low blood pressure but still given beta blockers , bisoporal, I haven’t taken it because some days my bp is 80/50 . If I take it I guess I will be bed ridden !!! Not sure what to do , the anxiety is horrendous.

Copsem
Copsem in reply to AFTadcaster

Yes make friends with a good chemist ! The chap in Sainsburys Cobham is awesome . The pharmacists are often really keen to help .

I have AF. 1) take bisopropol at night 2) join AF forum as advice ther is more refined to AF conditions 3) read up again and again on what is AF from google NHS and Bristish Heart Foundation - it took me 6 months to get my head round it and truely understand it all. 4) learn what you can do to help - no caffeine - no alcohol - no stress 5) sysmptoms - get a fit bit and learn how your heart is working ( I have a cheap one - this helps with anxiety I’ve faced not knowing what my heart is doing). Take stock and learn that sometimes you do have to walk slower 6) inclines and stairs - keep using them but accept you WILL be slower. This is because your medication is making you heart slower due to your condition. 7) accept the shock and uncertainties and you will feel better 8) go back to GP and discuss as ther are various meds for this conditions and various mixes. I am now on 5mg and feeling better than when I was on 2.5 or 3.25 9) let me know of some tricks or tips best of luck

Pippa1234
Pippa1234 in reply to painter25

Beta blockers slow everything down

I went from no palpitations, no nothing heart wise to an attack of SVT out of absolutely nowhere - similar symptoms to AF but a different mechanism. Taken in, had my heart ‘restarted’ with medication to get it back in to normal rhythm, but spent 9 days in hospital in the end as if I so much as talked my hr shot back up to 200+. Came out on bisoprolol in 2010, which I had no issues with at the time, but switched to a calcium channel blocker last year as a result of the bisoprolol suddenly (and somewhat inexplicably) sending me too far the other way 🤷‍♂️ Many cases of SVT, like AF, are labelled idiopathic because they never find an underlying cause despite testing, the important thing really is that the symptoms are controlled either via medication or by going for something like ablation if your symptoms are frequent.

You don’t mention when the episode happened, but no one told me until my second very major attack of SVT in 2015 that’s it’s completely normal to feel utterly exhausted and wiped out for a good 6 to 8 weeks or more after a significant cardiac episode. After my thankfully rare major bouts, to start with I literally have the capability to take my daughter to school, come home and fall asleep in the chair, and repeat the process again in the afternoon. That’s my lot for at least the first fortnight; I’m exhausted, weak, no energy, get out of breath etc. I’m telling you this in case some of what you’re experiencing is the recent aftereffects of a cardiac episode as opposed to the symptoms of the AF itself.

In any event, good luck. It’s easy to say try not to worry and very hard to do, but there is every chance that you ‘only’ have the AF and there are options to get that under control that work for many people.

A lot of points to comment on, satisfactorily for you, in a few sentences. A couple of key things maybe. Please don't "despair" but handle it as well as you can with the help of the medical profession and those closest to you. I have had A/F for ten years but luckily for me it has never become permanent and I am now using daily medication and a planned A/F procedure to help handle and maybe overcome the condition. You are right to insist on seeing a cardiologist. Prepare yourself for the meeting with a list of questions maybe. Look at the British Heart Foundation site on A/F and get their booklet(s) about this condition. Best wishes.

Yes look on the AF website

I am one of those with permanent AF but body seems to be adjusted to it and feel much better than when intermittent!

We all react differently to the condition

Reading the above posts just demonstrates how different we all are. So much depends on our background, lifestyle, inherited weaknesses and many other factors. So no two stories seems exactly the same. Last June when diagnosed with tachycardia and Atrial fibrillation I was looking for the comfort of finding someone just like me! Even my husband who is a 30 year heart patient and on similar meds is so different. His journey started with a heart attack as a 48 year old. Mine is heart failure at a 77 year old. He has seen more consultants then you can imagine, had every procedure available and been in H more then 20 times. I have not seen a consultant yet. I'm cared for by HF nurses and I'm going to be discharged in a couple of months! My oxygen is low but my heart is not racing, my BP low but not so fluttery, I have etopic beats. Now I'm not a very healthy person but I find out every little thing about my condition and learn from others. Best of all I go by how I feel and this last week has been really good but needed to rest today. Sorry about the rant! But as a newbie the lesson I have learned is to pick and mix what works for me but don't lose the plot with an overload of information. Hope this makes sense🤔

Hi I like you was very fit till I was rushed in hospital with a fast heart beat . That was 10 years ago , took them quiet a while until I was put on tablets that suited my condition I have had the other treatments like cardia version ect which did not work I am fine now will be on tablets all my life ie warfarin and the usual blockers hang in there and I’m sure you will get the correct tablets ect that suiet you and trust the cardiologist like me you will be fine I’m sure

Oh yes. I was put on bisoprolol beta b, and couldn't even get out of bed. Cardiologist changed to nebivilol, ok first year then got palmoplanter psoriosis on foot. Another side effect. Have changed to calcium channel blocker, fingers crossed. I'm like you. Not accepting anything because I'm told to. A doctor said to me, medicine is not an exact science, its trial and error!! So I research an have a voice!!

Did your psoriasis go? You are the only other person to mention it but me.

Only been changed a week. I researched it myself, never had psoriasis before. Most things are medicine related, fingers crossed

Thanks for posting. I did post some weeks ago about psoriasis but no one responded so I thought I was unique! I've had it since I was 5 years old but since taking bisoprolol 7.5 mgs it is so bad and on my feet and back places I didn't have it before. I've been so scared of messing with my and heart meds but if there is an alternative I will speak to g.p. as it's driving me mad and looks awful too.x

Look up palmoplanter psoriasis, it clearly states due to beta blockers.

Have done so. Will keep it in mind. Thanks.

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Hidden in reply to Love100cats

I have had psoriasis most of my life but since the beta blockers I have had an awful flare up even though I'm swapped to Verapamil now. I thought it was the stress, but maybe not. I will mention it to the cardiologist next week. Plus they are messing with my thyroxine dose, so that may have an effect too?

Love100cats
Love100cats in reply to Hidden

This so strange! I've also been put on thyroxine which I never had before my heart failure last year. It's a 'tangled web hard to untangle' but doable I'm sure.

I was like that, I told my cardiologist I'd rather not take bisoprolol if the rest of my life would be like that. She changed me to nebivilol. Now I'm changing to calcium channel blocker. There are so many alternatives, but they start with the cheapest first.

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I saw the cardiologist on Thursday, she was brilliant and answered all of my questions. She has doubled my verapamil to a one a day slow release tablet and put me on rivaroxaban also one a day instead of aspirin. She has referred me for cardioversion which will be in 4-6 weeks and she is confident it will work and said if so I will no longer need meds. She also said if it doesn't there are other options to try. I feel much more positive now. I am so pleased I dug my heels in and asked to see someone instead of just going away and taking the tablets. It is worrying how many people that may have happened to that haven't questioned what they were told by A&E. My thyroxine is also being closely monitored to check is it has anything to do with all of this.

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