Just diagnosed and it's a lot to take in - Atrial Fibrillati...

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Just diagnosed and it's a lot to take in

Pikaia profile image
14 Replies

Hi everyone,

I've been recently diagnosed with AF after having 3 bouts over Christmas (lasting 30mins, 2.5hrs, and 5.5hours respectively). I'm now on 120mg Dilzem until I can see a general cardiologist at the end of February.

The thing is, I'm still getting palpitations and the odd 'bubbling' palpitation and irregular pulse when I bend down or go up or down the stairs. Is this normal/to be expected, or is the Dilzem not working?

I feel, at 37, that I'm relatively young to have AF, and I'd be interested in hearing about the progression and lifestyle changes other youngish members have made. I'm hoping I'll be a candidate for ablation as I'd like to get back to feeling as normal as possible as soon as possible. In the meantime I'm trying to ignore my rising anxiety and simply hope that I'll soon feel relatively normal again.

It's great to find such an informative and supportive resource and I'm looking forward to interacting with you all.

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Pikaia
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14 Replies
BobD profile image
BobDVolunteer

Diltiezem is a rate control drug and will not stop AF, just control the rate hopefully so yes it will continue just not as bad in theory. I agree regarding ablation and sooner the better is my view. I had three but no AF now for nine years nearly.

Read all you can on AF Association website. AF and anxiety are common bedfellows unfortunately but knowledge is power to dispel fear.

Pikaia profile image
Pikaia in reply to BobD

Thanks BobD Looking across the site I can see you share a wealth of information and your replies are already helping me learn a lot.

Hi, I'm now 41 but was diagnosed with AF four years ago when I was 37. I was quick to change lifestyle by stopping caffeine and alcohol, eating a little healthier and drinking lots of water. I tried to keep stress free but that is easier said than done. I think the hardest thing to do is to read your symptoms and what causes them - the side effects of the drugs are similar to the side effects of AF and anxiety can give you the same symptoms too! The fact you havent gone into AF again now you are on the drugs even though it is bubbling is good and maybe you just need to carefully monitor. Maybe have an appointment booked at your GP in a couple of weeks so you can discuss the progress, especially if getting an appointment quickly is hard.

Hello Pikaia and welcome to the forum. AF is normally a problem for us wrinklies, but as you will find from the posts, it can affect anyone at anytime. You will get lots of help from the folk in the forum and there is a mass of information available on the AFA website.

Generally, the majority of people when diagnosed start to feel anxious and stressed which is likely to make their AF worse, so if you can, try to keep as calm as possible. If it helps, there are over 1m people in the UK who have AF, and many lead normal lives, so it is good that you are seeking specialist help. None of us on the forum are medically qualified, so we rarely comment on medication, but you are on a fairly low dose of Diltiazem so this may be reviewed later. EP's (Electrophysiologists) are cardiologists who specialise in AF and you should ask to be referred to one as soon as possible as they will discuss the benefits and risks of having an ablation.

Lifestyle is very important and you will hear from others how this can help. For most people, AF is progressive, but symptoms can be controlled using a variety of treatment programs, but these need to be determined individually as AF can affect people in so many different ways but the important thing to remember is that AF is unlikely to kill you, but you will need to discuss the risk of stroke which, due to your age, should be low as long as you don't suffer from other health issues.

As an intro, I hope this helps.....the other thing I would urge you to do is to find out if there are any nearby AF support groups.

Good luck, and just shout if you want any more help......John

Pikaia profile image
Pikaia

Thank-you everyone for your supportive messages. It really helps to hear how you all cope and to have your advice. I guess it's a marathon rather than a sprint but I'm glad to have you all as running mates.

rosyG profile image
rosyG in reply to Pikaia

I wonder if you do sports? AF can affect athletes at your age. If so you may need to de-train! I think ablation is very effective when you are young- I think it's wise to look up as much as possible about it so you are aware of risks and can make an informed choice. between ablation and medication. trouble with the latter, when young, is that you take them for so long and they also can cause problems.

Also, I think you should push for an earlier appointment- ring the secretary and see if they can bring it forward- explain you are still feeling rough.

Also, stop caffeine and alcohol - and lose weight f you need to- and make sure you have enough fruit and veg- ( I haven't had any more AF since increasing Potassium in my diet- noticed this was below range when in A and E)

All sounds bossy I know but have been found to help!!

Pikaia profile image
Pikaia in reply to rosyG

Thanks for your comment rosyG . I do some sports but I wouldn't call myself an athlete :-) Hopefully I can continue being active. I agree ablation seems the way to go, but I'll have to wait for the results of more investigations to know more about what's going on before we can have that discussion.

Thanks for the advice on caffeine, alcohol and food. It'll be the caffeine I miss the most. I've started a food/drink diary to try to identify what triggers I may have. Hopefully that'll help with management.

in reply to Pikaia

hi Picaia , sorry you have been diagnosed with Af. I am 72 and have just been diagnosed with it. I was really depressed and worried at fist but I have had so much help on this site. A lot of my worries are easier now with all these lovely people giving advice. You are only young so hopefully no other problems you will be ok.Good luck x

Pikaia profile image
Pikaia in reply to

Thanks Hidden ! Yes, this forum is already helping me a lot. My anxiety has already dropped significantly.

RaquelP profile image
RaquelP

Hi Pikaia, Next to met you. I am 44 and recently got diagnosed with AF in November 2016. I spent thanksgiving week in the hospital. My cardiologist placed me on Metroplol and had changed my dose 4 times because I was still getting tachycardias. Good thing is, I haven't had anymore tachycardias. However, I still get the occasional palpitations, dizziness and tiredness. I don't get shortness of breath as often as I did before. I too would get anxieties about when and if the next episode would start. And it's hard to cope with at first. But I've learned to just take one day at time and I do my best to stay calm when it happens. I'll try to place my mind in happy thoughts. Such as reminding myself I'm not the only one going through this and that it will soon pass. I hope this forum gives you relief as it has for me. There's a lot of great information people are sharing that has helped me learn more about AF. Understanding all we can about it helps with learning how to manage our symptoms.

Pikaia profile image
Pikaia in reply to RaquelP

Hi RaquelP , thanks for your comment. This forum is already helping a great deal. Sounds like your medication is working well. I guess occasional palpitations are the best we can hope for, at least for the moment.

Rellim296 profile image
Rellim296

I was diagnosed with AF six years ago but my heart has been misbehaving since about 1990 and I was certainly getting palpitations when I was about 43. The bending down bit rings a bell. I wouldn't say that I am a great deal worse now that I'm 70 than I was all those years ago, but the episodes were slightly further apart then. We are all different and some people's AF progresses more quickly than others. I'm not completely over the moon because I've made a point of eating well and keeping fit since my late thirties (I'm nearly 40 years older than my children) and a bit before before the heart wobbles started to creep in. I think I used to drink too much caffeine though. I don't avoid it now but I do limit it and I don't drink coffee.

Pikaia profile image
Pikaia in reply to Rellim296

Thanks Rellim296 for your encouraging reply. Once I know a little more about where I stand I intend to keep as fit as possible. I already eat quite well and hardly drink so hopefully, with adjustments, I can cope with this. The mental side is quite tough, as I'm sure you know, but I'm just trying to take each day at a time.

Rellim296 profile image
Rellim296 in reply to Pikaia

I think that as the years go by and nothing awful happens, it gets much easier.

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