Just getting it of my chest - Atrial Fibrillati...

Atrial Fibrillation Support

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Just getting it of my chest

Patricia52 profile image
22 Replies

I have had 2 horrible episodes of AF in 2 years. I often feel exhausted and my heart is beating fast but regular. Most of the time I feel fine and thought I had a real handle on it and was not afraid. I had to see the GP (I hadn't seen this one before) and he put the fear of god into me! He advised I take Xarelto and I wanted to know all about it. He said if I didn't take it I would have a stroke that would be worse than an ordinary stroke and did I realise I was 15 minutes into a 10 minute appointment so I could take it or not! Now i don't know what to do. I have read everything I can find. I went back and saw another GP who said I didn't have to take it until I felt I was ready. Really confused and unhappy. I am of to Australia next week and would rather be at home if I was to start a new medication. I have just joined this site and have had some kind advice but more would be gratefully received.

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Patricia52 profile image
Patricia52
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22 Replies

We can help you calculate your risk of stroke.

How old are you? Do you have heart failure, hypertension or diabetes? Do you have a history of stroke in the past or TIA ( transient stroke) or circulatory disease?

Separately, are there reasons why you should not have an anticoagulant?

Please share any other relevant details of your medical history and medication

CDreamer profile image
CDreamer

Firstly welcome, lots of friendly and supportive guidance here.

Your original GP is right and gave you good advice, even if you didn’t want to hear it! You ARE at higher risk of stroke if you even have one, short episode of AF the risk factor has been calculated as x5 for someone with no other factors. You automatically get a point for being a woman and another for being over 65 so if you are a woman and over 65 there is a very big incentive to take an anticoagulant as to NOT take one is rather like playing Russian roulette with your health. Any other factors just increase the risk.

If you are younger - and score 1 - then it would be adviseable and many, many people on this site score 0 and also take an anticoagulant - simply because they feel safer doing so.

We were recently asked as a newbie what one thing would you have liked to have known? You may find JohnBoy’s story pertinent as he wasn’t advised to take anticoagulants and is now living with the consequences after a stroke caused by AF.

Read all you can - AFA - information have loads of downloadable information so good place to start and avoid a lot of the misinformation. Ask to be referred to an EP - Electrophysiologist - the experts cardiologists for arrythmias.

Look at making lifestyle changes which may help.

Take the anti-coagulant and then jet off to Aussie land with good travel Insurance - ensuring you have declared AF and have a fab time.

Once protected from stroke AF is not an immediately life threatening condition - though it may make you feel as though it is at times - so all other treatments are for QOL - quality of life. But at the end of the day - taking any meds is a personal choice and I make all my decisions based on the risk:benefits ratio and as far as I can see benefits completely out way any very tiny risk of a cranial bleed from taking anticoagulant - and believe me I used to be very resistant to taking ACs!

Any queries etc just ask, very best wishes CD.

BobD profile image
BobDVolunteer

Perfect response CD I have nothing to add.

Patricia, anything can happen:

a) You decide to stay just as you are. You go off to Australia and have a good time and think about anticoagulation when you come back.

b) You decide to stay just as you are. You go off to Australia and AF steps in. Unless you are on the Birdsville track or similar, discuss anticoagulation with a doctor.

c) You decide to take Xarelto and it suits you fine. I took to it like duck to water and have had no problems of any sort. I was petrified of anticoagulation when it was first suggested to me and dire warnings, dislike of being at odds with medical advice and fear propelled me into taking Warfarin. It felt wrong and for some time I felt seriously adrift and moribund too, with only days left ahead of me. I was convinced it would turn out to be a dreadful mistake and some catastrophic bleed would swiftly finish me off. Four years on (and a switch after 18 months from Warfarin to Xarelto / Rivaroxaban) and I have no worries at all about being on an anticoagulant. Xarelto's lack of antidote is balanced by the fact that its effect is short lasting. As we have said before, some antidotes work very slowly and if you sever an artery, the treatment you will probably get may be the exactly the same whether you are on no anticoagulant, on one that has no antidote or on one with an antidote that will require a day or two to take full effect.

d) You take Xarelto but find it doesn't suit. Discuss as b) above.

e) You decide against anticoagulation and have a TIA or some sort of stroke. A dreadful stroke is such an awful thing that it tempts many to opt for anticoagulation ahead of time.

We know it's not an easy decision to make and it can feel like a big step to be taking.

Patricia52 profile image
Patricia52 in reply to

Thank you for your good advice. I am going to take them from tomorrow morning and now feel sure it's the right thing to do. Happy New Year and thanks for your kindness.

in reply to Patricia52

Happy New Year to you too. It's a bright move to be going out to Australia right now!

Good luck! I hope that, like many of us, you will have no problem whatsoever with Xarelto and feel relaxed about taking it. There are posts on the Forum about what is the best time of day (and indeed about managing pills with long haul journeys) and I feel getting pills out with breakfast is better than when one is out for an evening meal. Xarelto is to be taken with food.

Please follow the good advice you have been offered. Millions of folk take anticoagulants and very few have side effects or other problems. Also, contact your travel insurance company and ask them if you will be covered for a stroke if you decide to ignore your doctors advice.

CDreamer profile image
CDreamer in reply to

Very good point!

Patricia52 profile image
Patricia52 in reply to

I am going to start to take them tomorrow. I have insurance and have declared the AF and the anticoagulants. Thank you for your kindness.

in reply to Patricia52

Good news Patricia, have a wonderful holiday and let us know how you get on in Oz....

Jollies profile image
Jollies

When I was first diagnosed with af I was put on warfarin and thought nothing of it. For 2 years this worked fine, then after a series of chest infections just couldn't get my readings correct. Must admit it felt like a pain at the time. Saw my ep and asked to be switched to NOACs and was given riveroxaban. That was 18 months ago. Now if any gp or consultant tried to stop my acs, I would fight them tooth and nail.

Janith profile image
Janith

Cancel your trip until you are fully confident about your heart and yourself. Don’t take chances. Sorry.

RoyM profile image
RoyM in reply to Janith

With respect, life is to short to sit at home waiting for something to happen (that may never happen) it is the choice of the individual whether to take AC or not. What ever you decide don't let AF be the boss, it will do for sure uf you let it define you. Enjoy the trip to Australia. Safe journey. I am in Persistent AF, take AC AND travel the world.

Patricia52 profile image
Patricia52 in reply to RoyM

thank you for your comment. I agree with you whole heartedly. I was fine with the AF. I have had 2 episodes in 4 years both resolving themselves. I take verapamil. I saw a GP that I hadn't seen before and he really scared me with what would happen to me if I didn't take AC. I felt bullied into it. I am going to Australia for 6 months and while I am there am going to see a nutritionist and a holistic Doctor to get further advice. Happy New year.

Janith profile image
Janith in reply to RoyM

Omg ... you are so right. I just finished dinner ... pizza and salad ... very very spicy. I completed dinner and l was sitting there with my husband... and IT started ... it lasted maybe two minutes ... l just started crying ... l was so terrified ... then suddenly it just stopped. This is such a weird condition, l don’t like this. I am positive that my afib has something to do with diet. HELP!!!

Patricia52 profile image
Patricia52 in reply to Janith

I am a retired nurse and paramedic and have never ever just taken drugs without researching them. I have been reading some very interesting articles about diet and natural methods of controlling this awful condition. There is a place for drugs but there is also a place for looking at natural methods and helping yourself. When I first had it I stopped eating red meat, do not drink alcohol and have never smoked. I also only drink decaf drinks. I exercise and really don't know what else to do. One of the main causes is stress and the condition itself is stressful. Hang in there and look at diet.

Janith profile image
Janith in reply to Patricia52

So many thanks ... l try natural remedies as well. Happy New Year to you!

RoyM profile image
RoyM in reply to Janith

Hi again Janith. I think you will find that none of us actually like this condition but we do learn to live with it. Stress is also a factor so allowing anxiety to take over could only make matters worse....be the boss Janith. Good luck

Janith profile image
Janith in reply to RoyM

Thank you 😊 so very much.

UScore profile image
UScore

I've a chads score of 0 so haven't been taking anti-coags. But as I'm having an ablation in a few months time, I started on Apixaban last week. I was worried about it, but to be honest I haven't noticed being on it, and actually there's something reassuring about reducing (an already low) stroke risk.

cassie46 profile image
cassie46

I have been on rivaroxaban for four years, when I first took them I had no side effects and all has been fine. I an happy with the protection it gives me and I do not worry about the bleed factor, severe bleeding can be easily treated by medics. My Dad was on warafin, he had many visits to A & E with severebleeding from bad cuts and seriously bad nose bleeds. He was never once given the antedote vitk for warafin,so cuts an nosebleeds took a little more time to controll but all was okay.

Have a nice holiday and relax and enjoy. I would wear some flight socks those and move about as much as you can on the flight and keep hydrated preferably with water.

Cassie

bisop profile image
bisop

If I were you I would take the Xarelto....have been on it for several years now and have had no problems.

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