AF Association

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Newbie.

Hi all. I was diagnosed with AF two days ago and have been feeling rotten since discharge from hospital yesterday (maybe not unusual). I was monitored for three days and sent home with change of meds (from Metoprolol to Bisoprolol) and Rivaroxaban thinners.

I found this HU site when looking for a 'Safe place' as still feeling so unwell with uncontrollable shaking/weakness/palpitations/headaches, and have been totally repulsed by all food for several days (usually v. healthy appetite). I'll apparently have a follow-up in 3 months. I'm sure I'll learn a lot from others here and, hopefully, get to grips with the medical terminology in time !

Best wishes, Cat. 😐

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61 Replies

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Hi Cat

I am also new to AF, everyday seems to be different but this site is great for support and advice. I also lost my appetite but this is returning.

in reply to woody8

Thanks so much woody ; good to hear the appetite problem isn't so peculiar. My family are worrying that I've lost 1/2stone in 4 days and that fasting will be even more detrimental. Good to hear it might not be permanent !

Cat x

in reply to cat3

Hi Cat,

Really sorry to hear about your new health handful. I don’t know much about AF, and whilst I think it is heart related, I appreciate you don’t want or need it.

Good luck getting through it, and treat yourself to some fantastic food to regain your weight & get yourself better!

Cheers, DT x

in reply to DTBI

Hey David ; what're you doing here ; not through necessity I hope.

I normally have a healthy appetite and eat quite healthy food, so as soon as I can get rid of the nausea I'll 'top up' !

Thanks so much for bobbing in ………..really appreciated ! Cat x

in reply to cat3

Your so welcome stay well

BobDVolunteer

Welcome to our world. Best advice I have is to go to AF Association main website and read till you drop as knowledged is power. Ask us any questions and we will try to help.

AF is a long journey but you have some great travelling companions here.

in reply to BobD

I'm still a bit freaked out about this (for me) new world, but I'm guessing it's only a matter of time before I'll fit in and the weirdness will start to abate. Many thanks for the tip Bob ; I'll definitely take a look on the AFA website and gen up further on the subject.

Cat x

Hi cat3

I wonder if the Bisoprolol is part of the problem. How much are you taking?

in reply to oyster

Hi Oyster. I'm on 2.5mg per day but only started them on Saturday ; could they have adverse effects so soon ?

in reply to cat3

I think so but 2.5 mgs isn’t a particularly big dose. I was started on 7.5mgs but have had to cut back to 1.25 mgs because of side effects. A lot of people here have had trouble with Bisoprolol.

in reply to oyster

Can you tell me more about the types of side effects Oyster just so I can compare notes ? Thanks. x

in reply to cat3

Initial side effects for me were extreme fatigue and inability to climb a flight of stairs without feeling exhausted and breathless. These improved as I reduced the dose. I think it may be that side effects reduce to an extent with time anyway even at the same dose.

Now the main concern I have is dizzy spells due to intermittent slow heart rate, but again these are improved with a reduced dose.

The NICE/BNF factsheet and the manufacturers data sheet are a good source of information.

in reply to oyster

Thanks again ; really helpful info. I tend to avoid reading too much about adverse effects in case they coincide with existing symptoms (after effects of a brain bleed) …… so it's a bit of a lottery. But my brave pal reads the manufacturer's leaflets for me, with edits !

in reply to cat3

I was on 1.25mg and felt like I was walking and living in mud! Cardiologist stopped it when I told him how awful I felt.

This site is wonderful for support. X

in reply to Clyde12

Clyde, did your cardiologist replace the bisoprolol with a different beta blocker ? I already took Metoprolol which my cardio swapped for Bisoprolol, but I was told to continue with the Flecainide (for SVT) and Felodipine. x

in reply to cat3

Sorry for delay in replying. No .....the cardiologist didn’t replace bisoprolol and in fact told my Gp I didn’t have AF and told Gp to treat my high blood pressure! I got a Kardia....got AF readings and sent them to Gp who sent sent them to cardiologist! Now on warfarin feeling much happier not having nearly as much AF cos I’m not anxious! (on lisinopril for my BP.) X

in reply to Clyde12

Sorry, missed your reply Clyde. All this information is gradually sinking in and reassuring. I've had letters from Cardio for follow-up ECG & 24hr monitor, and my GP has called me in for a follow-up on Friday ; so don't feel so isolated now. I'll stick with the meds 'til I can speak personally with the doctors.

Stay well ! 🙂 x

Hidden

in reply to cat3

I am female, age 64. Diagnosed with Paroxysmal AF July this year, I felt like Clyde 12 ‘walking in mud’ I too was on only 1.25mg Bisoprolol which was stopped by GP after 10 days when I got so dizzy I could barely stand & my HR dropped to 42 bpm.

Saw a Cardiologist privately who arranged an echocardiogram & 24 hour monitor & put me on Flecainide 50 mg and Apixaban 5mg, both twice daily, in mid August this year. Symptoms (dizziness, palpitations) gradually reduced over a month and I’ve now felt fine for a month, fingers crossed!

I was also very tired but a blood test for Vit D showed low level so I now take a supplement & feel really good.

Being followed up in NHS in Nov.

I agree with the good advice from others to read up as much as you can. The initial diagnosis comes as such a shock it makes it hard to function alongside all the symptoms and drug effects.

I now feel confident and have a plan if AF breaks through with the instruction to take extra Flecainide if another ‘attack’ occurs.

Best wishes

in reply to Hidden

Hi Archie. For me it's not so much 'mud' as a balance problem and shaking so much I can't do my crossword !

I've had Flecainide for 20 years for SVT and now have an increased dose for the AF.

I agree that knowledge is what gives us control and I'm building it gradually but, as you said, not much sinking in just yet. But this site is looking like a Godsend. Cat x

in reply to cat3

I have been on doses of bisoprolol as high as 12.5 mg a day, and as low as 1.25 mg a day. For me the side effects were fatigue, and feeling like I was wading through treacle, even on the lowest dose.

Rivaoxaban also made me feel dreadful

in reply to Mikee69

I'm afraid I've stopped the Rivaroxaban already due to problems with bleeding, but I also want to test out which meds are causing the side effects and don't want to experiment with the beta blocker without advice from the cardio. Thank you Mike...……. x

Hello cat sorry to see your don't feeling well I wish you well! I noticed you had posted in this group and as I hadn't heard you around for a while I thought I would drop in and wish you all the luck and I hope you get well soon! P. S you were there when I needed advice so thank you God bless you 🙏🙏

in reply to Celtic27

Hello David ! Fancy seeing you here...….. a lovely surprise. I feel a bit of a wuss but the suddenness of the onset has knocked me a bid sideways, & I hadn't expected to come out of hospital feeling even worse.

But it'll be the clichés 'one day at a time' and 'hope for the best' I suppose.

How are you doing m'love ? Didn't know you're an Afibber. Love Cat xx

in reply to cat3

Hey Cat great hearing you im exactly the same im at my wits end now feeling all those symtoms and more im getting these tingling feeling in lmy legs and twitching in my feet and my head gets really heavy and painful it looks like im left to deal with this myself i was told ot could phycosermetic so i began physiotherapy but they still the side effects are still persisting dont know what to do ive had 2 cardio version procedures had an angigram there are no blocked archery dont feel confident anymore with the treatment cardiologist didn't come near me when admitted from A&E left it to medical team

in reply to Mayser

Hi Mayser. The posts you've just read were 4 months ago and things have changed dramatically since then. I had four visits to A&E & twice admitted, all the time insisting I thought there was a medication issue as symptom had worsening since the new meds.

After several weeks, during admittance for further tests, a different cardiologist arrived saying he believed my symptoms were mainly a result of over-medication by the Consultant and that I should reduce the beta blockers. I did, and within a day my symptoms improved radically and my ablation was cancelled.

I still have AF but it's controlled now with Bisoprolol and Flecainide and a lowered dose of Felodipine, so symptoms are greatly reduced. I take a Rivaroxaban thinner ever other day.

I suspect you'll need to stick with the psychotherapy if only for diagnostic purposes and, if there's no improvement, maybe have a neurologist take another look at your symptoms and your types & doses of medication. Pains and unpleasant sensations in the head aren't normally symptoms of AF.

It took around 6 weeks of pestering cardiologists, GPs, A&E doctors and specialist nurses to get to the root of my symptoms ; I hope you'll get a satisfactory conclusion soon m'dear, one way or another. It's so hard to be demanding when you're feeling rotten but don't give up ; there'll be an answer waiting to be found.

Good luck & best wishes, Cat x

Hello Cat welcome.

It is a nasty shock when you are first diagnosed.

The best thing I can suggest for you at this moment is to try not to be anxious about anything, learn some relaxation and breathing techniques to help you with this.

Weight loss is good for AFers as long as you don't waste away altogether can you manage some soup and fruit, taking fluids is the main thing.

There are lots of members here to support you so don't be afraid to ask about anything of which you are not sure.

Here is a link to the information Bob mentioned...

heartrhythmalliance.org/afa...

in reply to doodle68

These kind responses are so comforting, including yours Doodle. I've managed some soup this evening (pal threatened force feeding so not much choice) and a banana, so feeling more human. I've taken my sleeping pill two hours early this last two nights just to calm the shaking and nausea (and depression) which also helps limit the food phobia ! 🙄

Thank you for your welcome m'dear, and I'll take a serous look at the link you've provided tomorrow. All best wishes, Cat x

Hidden

Hello Cat and welcome to our forum!

Yes it is very scary to have an AF diagnosis particularly if , like most of us, you have never heard of it before. It's alot to get your head around and accept. I'm sure it will help if you get on to the main website as Bob has suggested and read as much as you can.

Hopefully you will start to feel a bit better in the coming days and regain your appetite. I was the same re loss of appetite after my early admissions but it soon came back ( unfortunately in my case 😁)

Regards

Sandra

in reply to Hidden

Well I wanted to lose weight so it's maybe a case of be careful what you wish for ! But from what I've read so far the blood thinners can be a problem with bleeding, which could be an issue for me as I'm always getting cuts and insect bites from gardening...….I just scratched an itchy bite and have spent a 1/2hour stemming a ridiculous amount of the red stuff ! 😳

I will take Bob's advice and take a look at the recommended AF website. I instinctively looked on HealthUnlocked as I've been a member of the Headway forum for over 6 years after a brain haemorrhage in 2012. And it seems that members here are as welcoming and engaging as they are on Headway.

Thank you for the welcome Sandra ............….and best wishes to you. Cat x

Hi cat and you are very welcome to the forum and the world of AF.

Diagnosis is a thorough kick in the teeth and takes a while to get your head around. I slept for a full day after I was discharged, knowing nothing and fearing everything. The good news is that things get better, you learn to cope, learn to avoid, learn learn and learn.

Your best defence is knowledge and the AFA website is the best place, together with this forum for finding out about the condition and its therapy. We are all in the same boat here - some coping with other health issues too.

I’m impressed that you found us so quickly after diagnosis and there is always someone online to answer questions and help or just listen and share experiences.

in reply to Finvola

Don't be too impressed Finvola ; I found you because I'm already with HealthUnlocked (on Headway) since a brain haemorrhage in 2012, so it was more habit than skill !

But a big thank you for describing the diagnosis as a kick in the teeth...…….I though I was secretly being a wuss thinking my life isn't going to be worth living (whilst nodding politely at the consultant & asking all relevant questions). So, amid the unpleasant symptoms, it's been a better day today making contact with like-minded, supportive folk. Thanks again m'dear ; see you around I hope. Cat x

Welcome to the forum Cat. If you were in AF and your heart was beating fast, then you will feel tired for a few days. It should, hopefully wear off very soon. I've not heard of anyone going off of their food after an attack though. I wonder if it's the shock of the situation that's affecting you? You've received some good advice from other members here to read as much as you can on this website, that's the thing to do. Wishing you well. Jean

in reply to jeanjeannie50

Hello Jean and thank you for your welcoming comments. I've considered a traumatic response as cause of today's symptoms but they've been so severe as to make me doubt it. However I'm all for 'wait and see' so quite prepared to sit it out for a while longer yet.

I've spent most of the day in bed on my laptop researching as much as possible (in between well-wishing phone calls from family & friends). Also I have a new GP who's a breath of fresh air and who's phoned me half a dozen times this week to 'bully' me into getting admitted to hospital for tests, and then again today to arrange a post-discharge appointment in November. So I'm feeling pretty cherished now...…..and so grateful to everyone.

Spirits suitably lifted ! Many thanks for your contribution m'dear….. Cat x

in reply to cat3

Hi, are you still in AF? Cos we are all assuming the episode has passed but maybe not, and that would account for you feeling ill. Otherwise it is just a case of getting over the physical and mental trauma and getting used to the meds. Best wishes 💜

in reply to Buffafly

I was told my rhythm was normal again, apart from occasional palpitations, after an ECG before discharge.

I had a distinct onset of shaking/nausea/agitation the day after starting the Bisoprolol and Rivaroxaban so assuming that it's side effects of one of those. I've stopped the Rivaroxaban to see which is the culprit but won't interfere with the other 'til I get clearance.

Thanks for your reply Buffafly. Cat x

Welcome. I’m a 75 year old great-grandmother and today I am going to Marwell Park Zoo with my daughter and the two great grandchildren. I may live to regret it tomorrow or even Thursday when I see the Electrophysiologist but today is for living with or without an AF episode.

Di

in reply to Hylda

Good on you girl ! I've managed to empty the bins, feed the squirrel & birds and make some lunch...………...not quite a walk in the park but still early days (I hope). Have a lovely day Hylda.

Cat x

in reply to cat3

You can do it.

Di

in reply to Hylda

😉 x

Before being diagnosed with paroxysmal AF I had issues with anxiety at times. The symptoms you describe are identical to how mine were. The shaking is horrible. Getting a diagnosis immediately my first episode started was a relief and compared with the anxiety more bearable. Like jeanjeannie50 I suspect a lot of this is shock. Once you feel back in control, I find slow breathing and meditation/ mindfulness help, things will soon improve

in reply to Bagrat

Thanks Bagrat. I'm sure there's anxiety involved, but the symptoms only came on with changes of meds so it'll probably be a wait & see period to see if the shaking etc. settles. I've coped pretty well with breast cancer, gall bladder removal and a brain haemorrhage in recent years so won't let this bring me down for too long ! 😉

Best wishes, Cat x

Hello Cat welcome to the new world, I've been on Bisoprolol for about 5 years and Ramilpril, in fact a whole cocktail.Took a while to get the dose right for me 2.5mg twice daily, any more than that and I couldn't function.Accidentally took too much one morning and ending up passing out for a moment so make sure you administer carefully ,good luck

in reply to Pendenis

Yes it's been a shock finding myself so confused out of the blue but I'm trying extra hard to keep the pills in order. I was already on many meds, but used to them, so now I need to get back to a strict regime. I just have the one 2.5 Bisoprolol and Flecainide 50ml twice daily. I'm undecided about continuing with the blood thinner.

I feel 90% better after a sleeping tablet so have been taking one earlier than usual ; that's when I can eat and talk on the phone. My daughter phoned as usual last night and we were in stitches about the ridiculousness of my health issues these past few years.

I know things are looking up when I can laugh at the situation !

Best wishes, x

Awe poor you, it will be so weird for a while till it all falls into place, it’s such a shock to be told so much, I was the same, hospital, monitor, tablets, and home.....you feel like you’ve been in a bad dream...sadly it wasn’t.....I started this may. I felt the same no appetite, don’t know why this is, lasted a month I guess, and for me it was useful as I lost weight. But the appetit came back. Dizzy I put that down to the tablets, I still get it sometimes.. it’s early days for you and the body takes a while to settle with the tablets mine did.....if you feel dead tired don’t worry that’s normal too but it gets better.

This forum was my saviour as it gradually dawned on me via all these wonderful fellow sufferers talking that life can go on with normality....cos at first you think life is so changed you won’t ever be normal again.......as the tablets settle in and if there’s only small “crazy’s”( my cardio calls them the crazy’s!), or no crazy’s, you tend to forget you’ve got it, ok it pops in your mind , but it doesn’t dominate every hour as it will be for you right now.

I never thought I’d go on holiday again, mine happened in Spain on hols, but I’m here now listening to the sea and haven’t thought about afib much at all. On this site there are people that do long haul flights , that work, and life does go on...I’ve learnt this thru this forum.....

So rest up, your body’s been thru a trauma.....don’t overdo it, you will know when you feel like doing more....certainly don’t push yourself.

I was you, and all these folk on here were you.....it will get easier......and thank god it does as it’s a horrid initial shock.....

Everyone’s here to answer all your queries.....I’m a newbie still asking questions myself.....take care, Sue

in reply to Morzine

Oh thank you Sue for such a lovely, thoughtful reply. Don't be offended but it made me cry because it describes so perfectly how I've been feeling, especially the 'This is where my life stops'.

I had a serious brain haemorrhage 6 years ago but, despite the many after-effects of the damage, I wasn't in the least traumatised or depressed as I knew nothing about my spell in ICU and my only awareness was after it was all over !

Your reassurances are exactly what I need right now ; thanks so much m'dear. 🙂 Cat x

in reply to cat3

Awe try not to worry......you aren’t alone, I’m in Flecainade like you, it’s been my saviour in stopping these crazy’s. Bisoprolol I was in your dose but as I got headaches all the time he put me on half. I take the anti coagulant willing as it’s a safe guard. It does take a time to get these tablets settled....I bought one of those pill boxes that you use for a week and put them in their daily slots as I’d never remember otherwise. You will hear every beat of your heart and every twitch will worry you early on , but it will slowly go to the back of your brain and not be so overbearing.....the hardest thing with this thing is getting our heads to stop worrying about it....rest up for a while and it’s a bit like a frightened bird under a bush, slowly you will come out.

Sue

in reply to Morzine

Sue, you have the knack of hitting the nail right on the head. The analogy of a frightened bird is so poetic (and so appropriate) as is the unwelcome focus on the heartbeat.

I've had issues for 20+ years with Tachycardia & had Flecainide for that already, so this is just a doubling of the previous dosage plus the Bisoprolol.

Oh and I have my pill organiser ; can't imagine how folk manage without them. You've probably no idea how comforting your comments are m'love ! Thank you. xx

Hi Cat

Hi again!!

PAF is a complex phenomenon that can have multiple causes and trigger factors and is often extremely difficult to treat effectively. Medication can often be a case of informed trial and error! I agree very much with Bob that knowledge is power but I would suggest that you are cautious when looking at medication side effects as when you are feeling awful and looking for causes it is tempting to blame medication for everything.

Bear in mind that drug companies and sources such as the BNF will list all side effects that have been reported no matter how rare! Bisoprolol has a terrible reputation amongst AF sufferers and I don't doubt that some individuals have severe side effects to the point that it has to be discontinued or substituted with an alternative. I've been on 10mg for over a year and I find the major side effect seems to be chronic fatigue.

The psychological impact of PAF is very distressing and frightening and I suffered severe anxiety and depression when first diagnosed. All this sounds very bleak but with a good GP and a good cardiologist can make huge improvements to your general well-being and your quality of life.

Don't expect a miracle cure and ignore the "quack" advice that can be found on the internet some of which can be potentially very dangerous.

Be strong and I hope you start feeling better soon

David

in reply to radagast58

Thanks for your sensible words David. I don't tend to look for info on side effects as I already have issues which could easily be confused with new symptoms. But I've learned a lot from folk here in a couple of days which matches my own experience and which is proving very reassuring, especially hearing the positive comments about it improving with time.

The tables have turned for me as I'm normally on the Headway forum reassuring newbies about the after-effects of brain injury and advising them to be patient ; better put my money where my mouth is ! 😏

Many thanks David for your thoughtful reply. Cat x

in reply to cat3

Please take care

So sorry to hear what you are going through. I had a successful ablation thank God. My body and life could not handle any of the meds. They felt like I was being poisoned. Good luck and take care.

in reply to Lyn68

Hi lyn68 were you able to eventually get off the blood thinners as well?

in reply to Alfieros

No I will always be on my Xeralto due to a brain bleed after passing out and my head hit a rock. That day was the beginning of my journey. I found out I had Braydicardia, then AF, then Sick Sinus. It took two years for my Cardiologist to figure it all out. Here in the States they go pretty fast to Pacemakers and ablation for people in my situation. Most of us just can’t live with the side effects of the medication. After the surgeries I am doing good except it has been only a month. I am getting my energy back and am so thankful for no more Afib! Take care.

Thank you Lyn. I'm hoping my system will eventually accept the meds but, if not, thank goodness there's the option of ablation.

So good to hear yours was a success m'dear. Stay well !

Cat x

in reply to cat3

Hang in there! Just picture yourself sitting in a chaise on the beach enjoying the sun and feeling great! It will come!

Can I ask why you decided to accept anticoagulation? I can see you have been a major contributor to Headway over the last 6 years, and obviously you know a lot more about SAH than I do. Just interested how you reached what was presumably a somewhat difficult decision.

It was virtually the toss of a coin ; there seem to be so many arguments for and against. When I woke up yesterday morning I couldn't decide so researched as much as possible, but ended up really stressed & with banging headache because either option seemed full of possible dangers.

So, just to end the dilemma, I picked one up and swallowed it. But later (leaving out gory details) I had uncontrolled bleeding and decided that it isn't for me. It seems to be a classic case of Hobson's choice

I made the wrong choice years ago with HRT and ended up with breast cancer. So I've decided to stick to the words in the Hippocratic oath ………...'First Do No Harm'. Not exactly an informed choice, I know.

Why do you ask Oyster ? x

in reply to cat3

Hi cat3

Sorry, I did not see your reply. I was trying to work out what I would decide in your situation. I think I would have to consult a neurologist and hope he/she would discuss my case with the neurosurgeon. I think neurologists are very clever doctors and best placed to weigh up the arguments.

Hi, I have been diagnosed with AF since 2009, after a knee replacement, and have been on aspirin , but after a suspected heart attack, the GP wants me to go on rivaroxaban, am worried about the side effects, but pleased I found this forum, am not feeling so unsure now.

Hi Bedar. I struggled with the idea of using Rivaroxaban, mostly since I'd had a brain haemorrhage in 2011, so decided to stop taking them. But a cardiologist told me he'd spoken to my neuro-consultant and that the onus now needed to shift to protection of my heart.

I decided on a compromise of taking one every other day to reduce the issue of bleeding and have had no side effects since starting them 0ver 4 months ago.

Good luck m'dear ; I remember the apprehension when starting this drug but no longer feel it's a problem, especially as many people swear by them. Cat x

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