When do you get used to scary Afib? - Atrial Fibrillati...

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When do you get used to scary Afib?

Chris-S profile image
8 Replies

I have had severe coronary artery disease for almost 18 years, which prevents me leading an ordinary life. However I have got used to it and as long as I don't do much at all and take all my pills on time, things are usually pretty stable and I can cope. I almost feel its under control. However the onset of PAF diagnosed at the start of April seems to be completely random and I am finding the attacks quite scary. I know what to do if my CAD changes but it seems that with Afib you just have medication to hopefully prevent a stroke but have to put up with the PAF attacks .

I often wonder if I am going to survive them!

Chris

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TheStand profile image
TheStand

Chris, AF on top of CAD. Wow, That's a rough road to go. You are correct, with the CAD at least you can have a plan and know exactly what to do. And the AF, as you said, seems completely random. That is what makes the AF so hard to get a grip on. Many of us have had AF you a bunch of years and over time "believe" we know what's causing it to happen. AF is so individual, and what I think are my triggers can be completely different from yours. I know that this will sound kind of stupid but each time you have an attack, write down what you had to eat in the last 12 hours and how much stress, sleep, large meals, drinks. Just try to think of what might affect it and over time you may figure out things that seem to cause it. Now, with that being said, after you think you have it figured out... Along will come another attack that had nothing to do with the trigger you figured out.

Also having the CAD limits you on available meds that can be used but there are meds that you can take that will help with AF.

I *assume* you are seeing a Cardiologist for your CAD. You need to speak to them about your AF. A Dr who is an expert at blockages may not also be an expert with Rhythm disorders. Blockages and standard heart issues are best handled by a cardiologist but a rhythm issue could be handled better by an Electrophysiologist (EP). They are cardiologists that specialize in rhythm disorders. Between the 2 they should be able to come up with a treatment plan to make it better for you.

As to surviving the attacks. I won't try to play them down because I have had them for over 13 years and mine were really severe. But the most immediate danger of an attack is stroke. And if you are on an anticoagulant you are covering that. So besides the stroke risk there is not a great danger caused by afib. I don't want to sound like I'm dismissing it because I know how bad it is but your chances of surviving AF are very high.

With your condition I would really suggest seeing an EP, if you are not already and try to get the 2 Drs to come up with something to help. You may also be a good candidate for one of the available procedures.

Don't give up.. There is hope out there for you. We just need to find the right road to go down.

Tim

SRMGrandma profile image
SRMGrandmaVolunteer

When do you get used to scary A Fib? We'll let you know when that happens! All kidding aside, Chris, it IS a scary thing to suddenly feel your heart so out of control, followed almost immediately with your worries being out of control. While I don't think any of us really get used to it, what we do is find a way to be calm during an episode and most important, as Tim mentioned, to know that you are as safe as possible from a stroke, which is the biggest risk of A Fib. The next important thing to do is not spend all of your energy worrying about the next one. Living well around it is the key. Don't let AF steal a single minute from the times you are in a normal rhythm. You've got a lot on your plate. Find out what activity is allowed and move as much as you can and do every heart healthy thing you can do in order to be as well as you can.

candyx profile image
candyx in reply to SRMGrandma

Can I ask for your tips! You always seem to be calm bless you, I have been hospitilised twice this month and had another attack this morning on the way to work, although I try not to stress I find it extremly hard and of course the anxiousness makes it worse. Seeing the EP guy next week for ablation have started the warfarin but so sick of this it seems to be getting worse! Help!

Chris-S profile image
Chris-S

Thank you for your very sensible advice Tim and grandma.Will do as you have recommended and try to be calm and chill out , Chris

candyx profile image
candyx

I agree they are very scary. I am at a low with mine want to burst into tears every time and have been hospiltilised twice in the last month, I cannot keep running to the hospital though everytime they are destroying my life! I feel that the doctors are missing something it really takes over all reasonable thinking. As regarding meds mine have been chamged a few times I am now looking at ablation and please god it works, maybe worth you looking into other routes too. Wish you well.

Chris-S profile image
Chris-S

Hi Candy I'm sorry you are having such a bad time. Luckily I am retired so don't have to worry about work - tho had to retire early due to heart disease some years ago. Wishing you all the best and hope that you managed to get sorted,

Chris

Hello Chris This is really rough and I have been there too. Don't panic, stay calm if you can. I have had two ablations, and the second one has really worked for me and reduced the number of episodes of AF to 4% of the time. You will improve with the right treatment from an EP. All the best and don't despair.

Becksagogo profile image
Becksagogo

There are two words which if a Doctor says will strike fear into most people. They are Cancer and Heart ............ the latter usually followed by disease! Afib is scary and the journey that you take to conquer it is so different for everyone. I was diagnosed last year at the age of 61 with an irregular heart beat and had a Cardio aversion and put on Amiodarone. I was abandoned by the NHS because as far as they were concerned the job was done. I chose to go privately at my own expense because I wasn't happy on Amiodarone and I felt there was something else causing the irregular heart beat. I have three leaky heart valves which need operating on and it is planned that they will do an ablation at the same time. I am petrified because the operation is huge but I know that without it I will just get worse. Whilst i have been kept fully informed about the physical effects i have never been offered any form of counselling for my mental state. I don't want to go down the pill route as I take enough and don't want to get hooked on them to add to my woes. I get a lot of hope from this site which has a good mix of facts and humour. I guess that my point is it is natural to be scared. Take comfort from this site; there is a wealth of good advice. Talk to your GP and other professionals and to friends who usually know somebody who has been through similar. Best wishes to you.

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