Nwe here & anxious: Hi all, I have been... - Atrial Fibrillati...

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Nwe here & anxious

genorm profile image
18 Replies

Hi all,

I have been diagnosed with paroxysmal AF and next week see my GP for (I hope) reassurance and a 'script for bisoprolol 2.5mg. I feel extremely anxious about the medication. How well will I tolerate it, is it enough, too much? I guess all here had the same concerns and have been answered, but when it comes out of the blue, it is a shock. I am the main earner in our home now, I must carry on working, but dread any side effects, especially any involving lethargy and tiredness - not great my employers. I do have other health issues, but somehow this heart thing has left me unfocussed and worried. Any help would be much appreciated. Thanks.

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genorm
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18 Replies
Uttled00 profile image
Uttled00

Welcome Genorm.

First of all sorry to hear about your recent diagnosis but you have already taken one of the most important steps, in dealing with AF, by finding this site. It is full of wonderful people who cannot only empathise with your condition but also offer some wonderful advise and are always ready to offer a cyber arm around your shoulder.

Ask your doctor to refer you to an EP who are the specialists in heart rhythms disorders and best placed to determine your course of treatment be it drugs or ablation.

Good luck

Dave

Finvola profile image
Finvola

Welcome genorm and commiserations that you are one of us!

Initial diagnosis is unsettling and I'm not surprised that you feel anxious and unsure. I'm not sure if you have seen a cardiologist yet but ideally you need to be treated by an electrophysiologist (EP) who is a cardiologist specialising in heart rhythms. He or she is qualified to assess you for appropriate drug treatment, depending on your health and symptoms or to consider intervention such as ablation. The main AFA website has details of all their registered EP's in the UK and you GP should be able to refer you to one. There is also a wealth of information on that website and on CareAF regarding all aspects of coping with AF.

Bisoprolol seems to be the drug that most AF sufferers start off taking - I started on 2.5mg to try to control heartrate. Different people have different reactions to drugs and only your physicians can evaluate their effects on you which is why we need to get to see the experts in heart rhythms.

Diagnosis was, for me, the worst part - like you, I was gobsmacked and fearful - but - it is possible to manage the symptoms, get treatment and carry on with life. The best start is to get information - the condition, symptoms, drugs, ablation, etc etc - knowledge gives you the power to influence your treatment and management of AF. It is very easy to say 'don't worry' but as stress is a trigger for AF, destressing is essential. A good GP can help, so can sympathetic family and friends - and this forum which has a group of helpful people who are knowledgeable in all aspects of living with AF.

Regarding your employment, you have certain rights in the UK. I'm not well informed in that area but there are other members on the forum who can give you advice and help regarding this.

As you will see from the forum, you are not alone - we all suffer, laugh and cry in varying degrees at different times. We've all been where you are today - some as far back as 20 years - so anything you want to ask - do.

Best wishes xx

BobD profile image
BobDVolunteer in reply to Finvola

There is not much I can add to that other than give my welcome as well. AF causes stress but is also affected by it so learning to find ways not to worry is an important step. AF won't kill you . Fact. It may feel like it sometimes but take heart if you'll excuse the pun. Many people actually find that the treatment drugs make them feel worse so it is important not to be complacent and to work with your doctors to find a solution that works for you. In order to do that you need to educate yourself about the condition and this place and AF Association main website have so much information and fact sheets that this job should be easy. Knowledge is power so get learning. Ask anything here and we will try tp help.

Cyber hugs (((----))).

Bob

iris1205 profile image
iris1205

Best Advice already said above. You'll find help and support here so stay in touch. thé meds are trial and error so stay in contact with your EP until you find thé right one for you. tske good care.

cupoftea profile image
cupoftea

Hi and welcome,

I take Bisoprolol 3.75 daily,seems to suit me, if it doesn't suit you can request to explore other medication and procedures to help with the condition. I agree with Bob learn all you can about AF which will enable you to ask relevant questions. I too have other health problems including cancer, AF tends to fade into the background.

Good luck and I hope that Bisoprolol suits you.

Pat

BobD profile image
BobDVolunteer in reply to cupoftea

Sorry I didn't know about the cancer Pat. Parallel threads us. NDDH must have us with season tickets.LOL My prostate cancer seems to be a thing of the past but agree it makes AF a small distraction. Take care.

Bob

cupoftea profile image
cupoftea in reply to BobD

Thanks Bob, had my oesophagus removed and stomach pulled up to make a new one, then caught pneumonia in Derriford, home for 2 days developed Guillian Barre Syndrome - a very rare virus that tells your immune system to eat itself. Normally lasts for 18 - 21 months, paralyses you, I was very lucky and up and walking without a stick after 5months.

Need to get my stamina up, small piece of cancer found in a lymph node, I am unable to have any chemo because of the virus. Have been given a reasonable chance of recovery, no scans, next appointment 5 months. Need to be positive. Good to hear from you.

Pat

BobD profile image
BobDVolunteer in reply to cupoftea

Glad to see you are still postive. Only way to be! My six month oncology apt is Thursday. After my prostate removed they found cancer in lymph node so had six weeks radio therapy and then three years hormone implants. Npt fun but seems to have worked so far. As the old saying goes.live every day as if it is your last as one day you will be right.

cupoftea profile image
cupoftea in reply to BobD

Good luck on Thursday, my Uncle now 86yrs had the implants and they told him that he was cured two years ago. Good to be intouch again.

Take care,

Pat

BobD profile image
BobDVolunteer in reply to cupoftea

Will message later.

jeanjeannie50 profile image
jeanjeannie50

Hi Genorm and welcome to our forum. There's lots of good advice in the messages above which I really can't add to, but just wanted to say hello. Ask any questions, no matter if you think they may be a bit daft. You will find lots of support here.

Jean

xfrack profile image
xfrack

Bisoprolol is a powerful drug and it is important to find the dose that suits you. My cardiologist started me off on 10mg which made walking uphill almost impossible. Together with my doctor I came down gradually through 5mg to 3.75mg mg to which I feel no side effects. Recently I have taken life very easy due to a hip replacement and my BP dropped to below 100 (av) so I have reduced the dose to 2.5mg taken as 1.25mg twice daily.

Unusually no-one has mentioned anti-coagulants. Every-one with paroxysmal AF should take an anti-coagulant to protect against the formation of blood clots in the heart which would pass into the circulation.

Learn mind control exercises to guard yourself from mental agitation.

Very best wishes,

Ann

CDreamer profile image
CDreamer

Welcome, sorry you are here as it means you have AF, but glad you found this site which for me was a real 'life saver in that it helped me put things into perspective and I learned so much that the docs didn't tell me.

Yes, some people find Bisoprolol will make you tired and lethargic and breathless AND it really suits others so the only way you will know is to try because it can help keep the episodes away and is usually the drug of first choice. 2.5mg is the lowest dose, I think I got up to 10mg/day.

You don't say if you have seen a cardiologist or EP (Electro Physiologist). The latter is preferable.

There is hope of excellent treatment, I have had 2 RF ablations which means that I now do not suffer any episodes and am completely AF free. This doesn't work for everyone but has helped many people so find out about the various treatments and how to access them. I just took what was offered for far too long. I learned that one has to be informed and to be assertive to get treated appropriately.

As to employers, AF is considered to be a Hidden Disease, it is a chronic condition so carries with certain employment rights. I am no expert here so you may want to go to a union if you are a member, or a employment legal specialist to ensure both you and your employers know the law so will treat you appropriately.

Very best wishes CD

lingooz profile image
lingooz

Hi welcome , I felt exactly like you and Iwas on bisoprolol and did indeed zap me out!! But dont worry as if so they will try alternatives , I was so anxious I was put on antidepressants , which I have now cut down by half , things will improve with time , all the best and let us all know how you are doing

EileenMary profile image
EileenMary

Welcome Genorm to AF. Everyone here is so supportive and understanding and will help wherever they can. I was on the lowest doe of Bisoprolol (1.25). Then the cardiologist said that I needed to up the dose to 2.5, which I did, but I felt so ill and had dizzy spells, and felt that I couldn't even leave the house. My GP lowered my dose back to 1.25mgs and the symptoms stopped and I have been fine on it ever since. I believe that it will be trial and error but you will get there in the end.

Eileen

genorm profile image
genorm

Thank you all so much for the re-assuring welcome and positive replies.

I am not getting my tablets until next week. At the moment I am hugely worried that I am starting my bisoprolol too high. My resting pulse is not that high (50-70), so I 'imagine' that I will feel dizzy and breathless. My cardiologist said he would see me again in 4 months - - if that would be the case, I'll be over the moon. Currently I am in remission for 2 separate (and not connected) cancers, so thought I'd already served my term of crap health. None of the reasons for AF seem to fit my lifestyle, so it hit me hard. (btw I am 60 & female!)

I am someone who will read everything about my conditions, so I will be ready for being palmed off at any stage. Unfortunately I live in a county with no centre of excellence for cardio treatments. My GP will be seeing me if things go pear-shaped. I hope not. I have been focussed in the recent past, but right now, I feel very down.

Would anyone risk going to work in the first days of taking bisoprolol? Driving?

Thanks and see you again, I'm sure.

x

Hi Genorm, If you want to get to the bottom of your condition and get drugs and proper advice, then you need to see a specialist, end of. As has been said, that's an EP (also known as a Heart Rhythm Specialist), they are cardiologists that have gone on to specialise in heart electrics.

I was in the same position as you 11 years ago, the main earner, and was concerned about my diagnosis etc. I have been put on Bisoprolol in the past by a GP and later by a cardio and my EP took me straight of it both times. Completely the wrong drug for my type of (common) AF. That doesn't mean it's the wrong drug for you, but how do you know unless you see a specialist?

Maybe you should think of a private consultation (£150-250?) because as a main earner you can't afford to fanny about. I asked my GP for a referral and I got one with the EP of my choice, at the QE Birmingham. Saw me in a few weeks.

Wait to hear what you decide to do.

Koll :-)

PeterJemmett profile image
PeterJemmett

I posted this in reply to another new AFibber. - Here's is a little something I wrote on the subject a short while ago, it might help .... peterjemmett.blogspot.com/2...

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