New to all this

[Cher17]

I have recently been diagnosed with AF and it scares the hell out of me I am on digoxin apaxiban and bisoporol 5mg but I still feel crap I have a muscular type of pain constantly in my back and neck my breathlessness is much better and my ties and fingers go blue if I sit for too long, I am waiting DC cardio version please someone tell me I will feel better eventually I don’t really go on like this 😥

[Kevwray]

Cher - I was diagnosed last Year in March & was terrified. Each time I was poorly I feared the worst. BUT once I got my head around my condition & spoke to others the nuisance factor was there but the fear went. I then put the negative energy into trying to get it resolved & had a cryogenic ablation 6 weeks ago which looks to have been a success. I guess what I’m trying to say is stay positive & don’t underestimate the power of positive thoughts. I have drawn strength from people on this forum after my recent ablation & after putting things in perspective miraculously the healing accelerated & am positive for a AF free future. Take care

[BobD Volunteer]

AF is a scary diagnosis for sure and a long journey to boot. Go to AF association main website and read all you can as knowledge is power.

One big problem is always finding the right combination of drugs to control either heart rate or rhythm. There is no magic bullet I'm afraid but life goes on and can be good. Have you seen a specialist in arrhythmiaas yet? Ordinary cardiolopgists are plumbers not electricians so seldom have the full knowledge to treat AF as well as possible. GPs again have a little knowledged about a lot of things. Electrophysiologists are the experts so if you are having problems getting the right treatment it may be a good idea to ask to be reffered to one.

The anticoagulant apixaban as I am sure they must have told you is for stroke prevention as AF vastly increases stroke risk and the other two drugs will slow your heart. Bisoprolol is usually the first line of attack by many doctors but is renowned for turning people into zombies at anything more than the very smallest dose and 5mg is not that dose.

Life can still be good with AF so please don't give up. Go bang some desks and see if you cant get better treatment. Cardioversion should return you to normsl sinus rhythm but is not a cure for AF so you will still need to have some drugs and it is importnat to get the right mix to actually improve quality of life.

[Cher17 in reply to BobD]

Thank you this is very helpful I only have a not very nice cardiologist at the moment but need to get my head around things and get on with it I am normally a just get on with it type of person but this has flattened me

[Hidden in reply to Cher17]

CaroleF has raised a good point about seeing an EP privately. It’s the route I took, but I was lucky because it was fully supported by my cardiologist at the time. I expect (but don’t know) that an ablation might be in the mind of your cardiologist because of the speed at which the cardioversion has been organised. A word of caution though, under NO CIRCUMSTANCES MISS ANY DOSES OF YOUR APIXABAN. If you do, they will probably cancel the procedure and rebook it at least 4 weeks later.

If you do see anyone privately, unless you can afford anything up to £20K for invasive treatment, make sure they understand that any ongoing treatment is to be done through the NHS. Don’t expect to be able to do any queue jumping either as that will, quite rightly, be frowned upon!

[Cher17 in reply to Hidden]

Thank you for that advice I need to have a scan of my heart but I am waiting waiting waiting lol I won’t miss my Apixaban I have already been warned of that, I have private medical insurance through my work so I may look at that closely and see if it is covered I just want to feel normal the dizziness that comes and goes is the worse part it’s all been such a shock as I have always been so healthy and I now feel as if my life is over I know I am being dramatic but it’s an awful feeling

[Kevwray in reply to Cher17]

My private health has been amazing - BUPA - I would still be popping pills sadly with the NHS. I had a terrible experience with Gloucester Royal last year - so if you are covered push for private - good luck !!

[ForTheLoveOfDogs in reply to Kevwray]

May I ask please, what type of AF you had & what procedure you had which means you don’t have to take medication any more? Thanks. C. 👵

[Kevwray in reply to ForTheLoveOfDogs]

I had Paroxysmal AF & had a catheter ablation (Pulmonary vein isolation). I have already stopped my Flecanaide & am due to stop the Apixaban in one month (was given for 3 months post surgery)

[Hidden]

Welcome to the place you would rather not be. If you are from the UK Cher, there are well over 1 million folk with AF and around 250K more who have AF but don’t know it. The good news is that people with AF which is controlled, like yours, do not die any earlier because they have the condition. Also, the major risk of having AF is the risk of stroke and for you, that is also significantly reduced due to Apixaban which is a very effective anticoagulant.

AF is a very complex condition which effects people in so many different ways and you need to read the mass of information available on the AF webpage to see how it might impact on you. It sounds as if you might have persistent AF because the cardioversion is designed to bring your heart back into normal sinus rhythm. Don’t be alarmed, but cardioversion’s are not a cure, sometimes they work for years, but very often a lot less, but they provide medics with an effective guide as to what ongoing treatment is likely to be best for you.

Anxiety is naturally a major problem, fear of the unknown affected virtually everyone on this forum but in time, the fear subsides but it can be a bit of a roller coaster journey. You will get lots of support from forum members but it is important for you to read up on the condition.....someone who will remain nameless, called BobD always quotes that knowledge is power and no one here will disagree....hope this helps for starters.

[Cher17 in reply to Hidden]

Yes I am in the UK and thank you fir the advice I have just joined the AF website so will be reading as much as I can I hope you are well

[CaroleF]

Welcome to the Forum - a place where pretty much everyone here can empathise with what you are currently experiencing. The initial diagnosis is scary and some medication (which can only ever be to try to improve your quality of life (QOL) can actually make you feel worse - not better.

I'm afraid pretty much any medication has the propensity to induce muscular pain so it's hard to determine whether any of the meds. you are taking is responsible for that.

Freezing cold fingers and toes are a well known side effect of bisoprolol. (I speak from bitter experience!) 5mg is not 'a baby dose' so you might be OK on a lower one - though I wasn't.

What can you do before finding yourself a more understanding cardiologist or, better still, an EP? Talk to your pharmacist (they are the experts on drugs) about the following possibilities:

Taking the dose a night rather than in the morning.

Buying a pill-splitter and taking 2.5mg in the morning and 2.5mg at night

My pharmacist suggested both of those and I have to say there was some small improvement. However, we all have such different experiences with both AF itself and the drugs we are prescribed that either of those tactics might work for you - at least until you can get a treatment plan that works for you

As you have been told. electrophysiologists (EPs) are the experts on arrhythmias but you might find that being referred to one is resisted either by your GP or by the cardiologist. Where I live you can only get referred if they are considering an ablation as the 'next step' after various drugs have been unsuccessfully tried.

If you can afford it, there is a way round it as you can see an EP privately and then be put on his NHS list for any treatment. However, be aware that any tests (eg,ECG, echocardiogram) will need to be payed for separately. I've not gone this route myself but quite a few people here have and could offer further information and advice.

Good Luck

[Morzine]

Awe poor you, we all on here have felt the same as you, it’s like being sucked up into a whirlwind of fear and despair and yes you will feel as if it’s at the mo never ending..... I was diagnosed afib in May and felt awful, breathless and my body wasn’t my body anymore, no energy....but as medication settled things down , days got settled and normality creeped in. Everything everyone has saud is so true.....this forum helps so much in getting to grips with this, uts helped me a 100 % , I think it’s helped me survive the dark early days....to the point I’m optimistic and I’ve gone from being scared stiff to go away from France, but today I’m off to Spain for two weeks and I’m nit scared thanks to everyone here!......try not to fret, better times will come......

Sue

[Cher17 in reply to Morzine]

I hope you have a wonderful time in Spain I am just back from Minorca and it was awful I was so scared and didn’t leave the hotel and my husband was not exactly sympathetic but I should not have gone but my cardiologist said it would be fine! but I was on the wrong medication I have since been put on bisoporol and it’s not so bad but I am still terrified of going away anywhere I need to get my head around it all I am normally such a strong person but this has flattened me I don’t even want to go to work but I keep going but it’s so hard.

[Territwinks in reply to Cher17]

Hi there, I'm new and in the same boat as you. My meds have made me feel the same as you, like a zombie and I've been off work for the past month. I've been waiting for a cardio appt for the past six weeks to have tests but no letter had arrived yet. GP is not clued up and my BP is way into high despite the meds. I don't feel scared to be honest, I feel that I'm going to live my life. I'm going to try and live my life normally. Yes I won't be pushing myself too hard but I'm defiantly booking holidays and going out. I do hope that your fear decreases. It is a nasty shock to find out that you have AF but I'd rather be on meds and know about the condition as I think that I've had it for a while but not known. Love all the advice to your post, it's really helped me too....Great support, thank you.

[Hidden in reply to Cher17]

What is it that scares you? Very occasionally something goes very wrong but mostly we drift along without any big problem. Every time we test the water and don't have a catastrophe we get a little bit bolder. If something does go wrong we learn from it and so do our doctors and our treatment improves and so does our knowledge. But it can take time to feel you have got on top of it.

[Morzine in reply to Cher17]

I know how scared you feel, mine started on hols in Spain , it was overwhelming suddenly goung from a nice holiday to hospital.....I know you feel terrified, I ventured to Italy which isn’t far from the alps where I live about ten weeks ago and felt panic stricken goung out to eat, I used to love that, but how do you explain to your husband you feel scared when logically if the afib is calm you should be your normal self, but this thing occurring does make you loose confidence in normal things, but as Rellim2 said it’s slowly getting a bit bolder and that comes with time.....I’m hoping my holiday in Spain will be minus afib and I’m feeling more confident in my body now than in Italy...I tell myself other people do it, some do long haul flights, ..I can’t say I’m the old me, but it’s early days, maybe if I could have a few glasses of wine I’d feel relaxed more but I’m scared to do that! I can have one though with no effects so I’m grateful for that!

You aren’t alone in this , try not to think about it day and night, I did and I dint think that helped me at all, but it’s hard not to.

Sue

[JanettePearson]

I know what you mean about being a 'just get on with it' type of person. I am like that too and one of the problems with that is, because the problems are with your heart, people can't see it and don't understand when and why you feel poorly. I often feel unwell but just carry on with everything because its almost expected of me. You Have to stop and take care of yourself and Rest when needed!! I have had to explain to my family that sometimes I don't feel so good so can't babysit or do the cleaning or make the dinner. Regarding the dizziness, I also had that a lot and when the doctor took my blood pressure it was alarmingly low, so she halved my Bisoprolol immediately and that helped. Please try not to worry too much. AF can be managed but you have to be selfish sometimes and take care of yourself!! X

[Roobydooby]

Hi Cher, like you I’m recently diagnosed with AF (paroxysmal) & found the support & info on this forum invaluable. I too was scared & shocked, still am really, I think it’s a case of taking it one day at a time & accepting that just because you feel fine for a couple of weeks, doesn’t mean you won’t wake up one day feeling rotten (that’s what happened to me yesterday). I know by reading the posts on here that this is quite common, so try to reassure myself that it will pass & life goes on. It’s a huge thing to get your head round, I think we need to take it one day at a time & be cheered by the fact that there are people on here who have lived with AF for many years & still able to live a full active life. All the best

Jen

[healme]

Hi Cher

I understand your fear and wish I could give you wondeful advice to stop you worrying but we all react differently to the diagnosis and the meds we are prescribed. I was diagnosed almost a year ago but only after I had a stroke and they were looking for the cause. AF is a worry but you will get some excellent advice from this forum and try to befriend your GP as they can point you in the right direction. Stress will make things worse so try to be kind and if you can afford it take a break from work or some of the pressures. Be kind to yourself and get well.

[healme]

Sorry I meant to say try to relax not try to be kind ooops

[majjic]

Hi Cher...I was diagnosed two months ago....I was put on Rivaroxaban and Bisoprolol.....I felt so ill i was at my wits end....I also had constant diarrhea from the day following the start of the tablets.....The doctor took me off the Bisoprolol and put me on Atenolol.....I feel fine now and the diarrhea has settled down and gone away mostly....Hang in there....it takes a while.

[jaqshell]

Hi Cher, I know exactly how your feeling but trust me it will get better, your bound to feel anxiety take each day as it comes, you will get through this xx

[ForTheLoveOfDogs]

Hello Cher17,

I’ve also been recently diagnosed with paroxysmal AF ( there’s a lot of us about it seems 😊 ). Also on Apixaban & Bisoprolol, just trying to adjust the Biso so that it stops the AF episodes (but not the heart 🤪). Whilst I may jest, I can assure you it has also devastated me & knocked me for six. I had hoped for a few more years before suffering from some chronic dibilitating illness, especially as we’d like to travel long haul.

Even with some of the side effects, upset tum etc, I’d still rather take the meds to stop me getting those horrendous AF symptoms and, hopefully, stop me having a stroke from a blood clot!

I’m sure you already know this from your Dr, pharmacist or from the meds information leaflets, but I was specifically warned NOT to take muscle relaxing pain killers i.e. Ibuprofen etc or Diclafenic, only take Paracetamol. Just thought I’d mention it as you said you were suffering from back & neck muscle pain.

Well now I count the days to my cardiologist appointment on FEBRUARY 4th! (at least it’s in 2019) 🤨

Good luck & all the best to you, keep your chin up. C 👵 xx

[Cher17]

Omg February 2019 lol I was hoping for this year but hey ho it will happen when it happens I am only taking paracetamol I was previously on naproxen for a knee injury but I don’t have them anymore the paracetamol does help so I will continue with them and the odd cocodamol I have the lowest dose but thank you for mentioning the upset tum I didn’t connect mine with them so that’s another whinge ticked lol it’s an utter minefield but this forum is brilliant thank you all

[Ianc2]

Hi Cher

If you dig around on this site you will find a lot of information about changing your life style to give yourself a good start in dealing with this condition.

If you are overweight you may find getting into your BMI range will help, or using the rule 'waist size in inches is half your height'.

If you drink you might find that dropping, or severly minimising, the use of alcohol may help. A lot of people drop coffee or caffienated drinks as well.

The other possibility you can implement is to get a regular gentle exercise program underway, e.g. walk a daily mile, but you have to do it on a regular basis.

Some people make dietary changes as well (see carneuny's comments).

You may find that visiting this site becomes a new absorbing habit. Welcome aboard.

[bennie06]

Yes you will feel better eventually. Speaking from experience it can take a month for your body to accept Bisoporol. I now have no significant side effects with this medication and have made minor life style adjustments.

Try to stay positive and good luck.