Newly diagnosed - always worried - AF Association

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Newly diagnosed - always worried

Gypsylorna profile image

Hi All,

I started having symptoms of AF many years ago, which were dismissed by my doctor. Since April this year I have been under a cardiologist and diagnosed with Paroxysmal AF. This is at present quite frequently episodes. My consultant recommended beta blockers, however, saw my gp who has prescribed Verampril due to my asthma.

I have constant anxiety due to disrupted sleep (episodes and eptopic beats during night). I always fear sleeping as I think I may not wake up.....silly I know.

I worried abut taking the new meds too, never take more than paracetamol for anything so medication and possible side effects add to anxiety.

There was a mention of cardio ablation, but this was seen as a last resort. So guess I will have to try the meds.

Since all this started I feel down, anxious all the time. Normally I am the positive one but this has scared me. Sorry for my first post to be a bit negative, after reading others posts I have felt reassured and I use this group to put my mind at rest. Keeps me calmer to read a little about others journeys with AF.

14 Replies

Welcome to our forum, thats the place to be for us AFIBs.

Though cardiologists are profound general experts in cardiology, what we and you need is an EP. They specialize on the electrical system of the heart. As Bob always says if you wanna fix a short circuit in your house you call the electrician and not the plumber.

We are all different and AFIB is just a pita but hang in there you are not alone.

Seek out a good EP and take it from there

Cheers

T

G'day,

Yeah, like T says - get yourself an EP. You may need to consider an echocardiogram, which is like an ultrasound of the heart to check on other parts of the cardiac system to make sure there are no other underlying cardiac problems beyond the heart electrics.

Also you need to teach yourself, learn all you can about paroxysmal AF. Best thing to do is (if you haven't already done it) get onto the Atrial Fibrillation Association website and read up all you can.

Its not the end of the world - you may feel like it is, it is not. I did in the beginning, most likely we all did. I was diagnosed with paroxysmal AF in Jan 2010 aged 65 and I'm 73 next month.

I'm still active. Still work part time 30 hours plus a week driving tourist buses and handling passengers luggage.

I just take my meds, watch my diet and try and live a healthy lifestyle. That seems to do it.

May the force be with you.

John

Hi and welcome.

Agree re Seeing an EP - I got nowhere with Cardiology. Do your research and find an EP in your area and ask your GP to refer you to the, you have a right under the NHS Charter to be referred to a named consultant but you need to take your GP along with if you can - or see a different GP.

May I suggest you go back to your doctor and ask for a sleep study? Your GP should do an online questionnaire with you and if you score a certain number of points they should refer you.

The pattern you describe reflects the pattern I had with AF. After treatment for obstructive sleep apnea I am much improved. SA is also one of the main underlying causes of AF.

Unfortunately anxiety is a bedfellow of AF and you can address this with many simple techniques such as breathing exercises, Mindfulness, Yoga, exercise or simply doing things you enjoy which you enjoy - music, singing, dancing, painting, sewing - list is endless. This releases hormones such as endorphins which counteract the stress hormones.

If you do have SA then I think that the breathing pauses causes a Physical anxiety response so we wake ourselves and that means you can wake up feeling panicky and very anxious.

There is a wealth of help and support here so do read the posts, research and look at the AFA site so you can be persistent with your doctor, SO many patients, especially female patients, get dismissed so I fund I had to grow a backbone and learn to challenge doctors in an informed way - which means learning their language.

You can ask questions, learn as much as you can and sound off here.

Best wishes CD,

PS - ablation can be a first line option but you need to see an EP. There was at one time a requirement from NICE that you had to have failed drug treatments for ablation to be considered - so sometimes failing the drugs is a really good thing!

Your GP was absolutely correct to change your meds - not impressed with your cardiologist as Beta Blockers are contra indicated for asthma.

Was anti-coagulants discussed? If not you should also discuss whether or not you should protect yourself by considering the stroke risk - which again your docotor can do and discuss with you.

As you are probably already aware, AF in itself is not considered immediately life threatening, which is why it is often ignored, but there is an increased risk of stroke so an assessment should be discussed with you,

Please do ask any questions and research anti-coagulants as this is considered first line treatment,

Welcome and be assured it does in most cases get better, however my advice would be make some space, do your homework on research/consultants/tests and don't expect your daily life to be the same......in my case after anxiety, a touch of depression, umpteen visits to medics, dentist and tests 3 years later my life is much better than before AF!! Good Luck.

PS Sorry forgot to say I have found experienced Alternative Practitioners (Naturopath & others) an essential part of my recovery.

Hello and welcome. I agree with other posters that an EP is the best way forward - it certainly was my best decision. Your feelings of anxiety and loss of your healthy life are exactly what I went through after diagnosis. A good appraisal of your condition, confident treatment which takes your needs into account and a plan for the future will help you to get back on an even keel.

In the meantime, have a look at the main AFA website and try to make favourable lifestyle changes - stress, diet and exercise being the easiest targets to start with. AFA website:

heartrhythmalliance.org/afa

Best wishes

Before I was diagnosed with AF I had frequent ectopics, did not know what they were and was convinced my heart was going to stop one day and was too scared to ask my GP so I was in a constant state of anxiety. When my GP began to query my mental state I gave up complaining thinking I would have 'I told you so' on my gravestone! This forum is great for reassurance and sensible advice when action is needed.

Talking of asthma, please make sure your asthma is well under control as any kind of breathing difficulty can affect AF and disrupt sleep. Getting asthma meds balanced right when you have AF is tricky but can be done.

Hello Gypsylorna :-) your story is similar to my own, symptoms ignored for many years/recent diagnosis confirming my suspicions.

I too have asthma and have been prescribed the beta blocker Nebivolol which it seems some asthmatics can tolerate. I am also on an anticoagulant because I have a measurable risk factor.

I have had no wheezing on this drug, it has reduced my blood pressure and heart rate and my episodes of PAF are being kept in check . I am still getting ectopics and my BP monitor and pulse are registering episodes of AF but they are no longer presenting nasty symptoms at this time .

I am doing my best to help myself maintain this period of stability by modifying my diet and lifestyle, avoiding stressful situations and above all staying calm and not worrying about my condition.

You mention an ablation, according to the NICE guidelines on AF none medicinal treatments are only offered in many cases if medication fails see below for NICE information to the public...

nice.org.uk/guidance/cg180/...

A lot of people mention seeing an Electrophysiologist, I am afraid in many parts of the country this is not an option unless your prescribed medication has 'failed' or unless you are able to travel and pay for a private consultation.

I haven't even seen a cardiologist just a cardiologist's nurse who took my history which the the cardiologist then used to prescribe medication via my GP. AF if in my area is managed in the first instance by a GP.

It is a good idea to read all the NICE Guidance in the link not just the section for patients so you are 'armed' with information and if you feel the medication is not keeping your AF under control go back to your GP and tell him .

It can take a little time to find the right medication for you.

Try to stay calm and not to worry, doing so can make your AF worse. Once you get used to the shock of the diagnosis which we have all been through it may not be so bad :-) .

Remember many here have been through the same experience, we do understand and you are not alone.

The way you feel now is not going to last because you are already reassured and you will gain confidence too. You have the support of an army of knowledgeable people who understand because they have AF and have been not far away from where you currently find yourself. We have made progress in various directions. As you say, AF is a journey and a visit to an EP has been a good port of call for many of us.

Someone will remind me what the third thing to know about AF is.

1. It's not fatal

2. It won't kill you.

Jollies profile image
Jollies in reply to Rellim296

You're not going to die from it?

Rellim296 profile image
Rellim296 in reply to Jollies

Thank you!

Buffafly profile image
Buffafly in reply to Rellim296

😁

Hi, and welcome to the forum. I found that anxiety was the worst effect after I got over the first attack. Since then I've read a lot of the posts on here and searched around on the AF website and learned a lot. As others on here say, AF will not kill you, although the side effects might. The main things to worry about are the increased stroke risk (anti-coagulation) and having an attack whilst doing something critical (don't go mountaineering!). Cheer up, it's not that bad.

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