Recent 1st AF attack & yet to attend clinic. Apprehensive!

[kkatz]

I recently (4 wks ago) had an AF attack . I was in A & E for 4 hours , was given Adizem XL , sent home & heart back to regular rythm in about 6 days & feel fine. I have an appointed at the Rapid Access clinic next week. I keep hoping it will be a one off but is it Likely? Any chance at all ? I already have Coronary stents & HBP.What to expect ?

[CDreamer]

Hi kKatz and welcome. The usual tests at first appointment will be ECG, BP, bloods and referral for an echocardiogram.

It will depend upon who you see at the clinic, it does help if you can see an Electrophysiologist or EP as they are cardiologists who specialise in the electrics of the heart.

As to whether or not you may experience another episode - a very few people have one episode and never have another but it would say most of us on this forum tended to have progressively more frequent episodes over a period of years. So I had one episode, then nothing for 2 years or so, then a few episodes within a few months, nothing for another 10 months - gradually they became more frequent and I became more symptomatic.

It is useful to rule out any underlying causes such as thyroid problems because if that is well managed you may never suffer another episode. Lifestyle can play a part so looking to live as healthily as possible may help and some people find supplements can be beneficial.

Got to the AFA website and read all you can about AF so you can attend clinic informed and fore-armed with questions to put to the specialist you see.

Feel free to ask questions, this is a very supportive and knowledgeable group.

[kkatz in reply to CDreamer]

Thanks for your reply CDreamer. I am been reading this board for a few weeks now & it is good to know what others are experiencing.My apointment is a special nurse lead clinic & they will do an ecg & heart ultrasound. I can cope with having AF . What I really dont want is to go on warfarin as we are snowbirds & head off to portugal every winter, So testing & getting established on warfarin not easy . I know there are other Anti coagulants but you can guarantee if there are side effects I will get them. I do already take medications twice daily for gastritis, I suppose I should just wait & see what they come up with but 5 weeks wait is now getting to me. It could drive me to drink but I have practically given that up in case it brings on another attack. Well time for bed now & thanks again.

[Hidden in reply to kkatz]

Anyone who has AF will at some point be advised to take an anticoagulant and that seems to be the sub-text of your question. If I can answer that obliquely, I was deemed by an EP to be a low stroke risk and not needing an anticoagulant. Apart from AF trigged by hard cardiovascular exercise in the gym, I had excellent health metrics and my metabolic age was fifteen years less than my real age. Eighteen months after the consultation with the EP I had a full stroke that has left me partially sighted, the DVLA have revoked my licence and those factors put more pressure on my wife. If I'd known that I was rolling the dice on the risk of a stroke, I'd have asked to be put on an anticoagulant. Given your health issues are you prepared to roll the dice?

[Rellim296 in reply to kkatz]

Many of us didn't want to start taking anticoagulants but we don't want to have a stroke either and it has seemed the lesser evil. Keep an open mind. Lots of forum members have taken to Warfarin like duck to water and travel and self test. Many take one of the alternatives without any side effects.

We have all hoped our first encounter with AF was a one off but it tends to be a path that, once trodden, gets ever more frequented.

When you have grasped how to live with AF and have gained the upper hand, it can feel much less daunting than when it first threatens to intrude into one's life.

[Hidden]

As a postscript to my reply, I should add that I had a reaction to an AF control drug that was near fatal - my case spawned a medical paper - but I now take the anticoagulant Pradaxa. I had an excellent Consultant Neurologist but I'd rather not present with a serious disabling stroke. I hope that I can persuade you to consider an anticoagulant if it's offered.

[kkatz in reply to Hidden]

John_Boy I really appreciate the advice & the fact that you post here to relate your experiences.I certainly wouldn't want a stroke .

[Hidden in reply to kkatz]

I've mentioned before a poster used by MoD Surface Ships. It shows a sinking ship with the text: some people serve as a warning to others. I'm not trying to be oppressive or dictatorial, but trust me you don't want to risk a stroke and not knowing where the bathroom is in your house, or learning to use a computer again, or wondering if you will get early onset dementia. I've been there and I still wonder about dementia.

[Bagrat]

The question of anticoagulants is a difficult one. Risk of stroke increases with age and on the AFA website you can check your chads2 vasc score. In addition your physician will have to factor in your gastritis and bleeding risk. I personally don't think going to Portugal is a reason for not being anticoagulated as there must be innumerable Portugese who are in a similar situation and on warfarin. You will get variable responses re the skiing I'm sure.

[kkatz in reply to Bagrat]

Thanks Bagrat I have looked at that & the main unknown factor is 8 & 9 years ago I may have had 2 Tia .On both occasions they decided they were extreme migraines. I think I will let the specialists decide. However l would prefer the new NOACs but worry that warfarin is first choice as least expensive.

However we will find out soon.

[Dodie117 in reply to kkatz]

Like you, I had two suspected TIAs, never properly diagnosed. I fought and changed my GP due to slow prescribing of anticoagulants. I am on apixaban and grateful to get it!!

[CDreamer]

I agree with Bagrat - I think every single person who comes onto this forum states they are afraid of being put onto anit-coagulants on diagnosis, I certainly did! Now I take them gratefully. Never, ever stopped me from travelling far and wide - whale watching in Iceland in June - wouldn't have considered it without being anti-coagulated.

John-Boy is not the only poster who has had this unhappy experience of suffering a stroke because he wasn't anitcoagulated. It really is the biggest risk factor for AF. I have taken 2 different NOAC - the new alternatives to Wafarin - and haven't had any meaningful side effects from either although you may want to stay away from Pradaxa if you have gastritis.

Have you considered that the gastritis may very well trigger the AF? If you can get that under control, you may find you don't have further episodes. I found the very biggest trigger for gastritis is carbohydrates - stop eating bread period and reduce all other carbs, including starchy be such as all root potatoes and I now have no gastritis and AF episodes are fewer. We are all individual so you may find certain foods effect you more - have you done a food diary/symptom analysis? If not I would suggest you try that.

[CDreamer]

I read John-Boy's quotes as it was not the bleed risk taken into consideration but that he was low risk for stroke on Chads2vasc?

I was considered low risk & didn't take ACs either for many years with AF & was lucky I didn't have a stroke.

What convinced me was reading the studies and when they changed the criteria & you gained a point for being a woman. At the start my EP recommended it but left it as my choice and didn't insist. As I got older - he insisted!

[Hidden in reply to CDreamer]

I had an haemangioma on my tongue that was deemed a bleed risk if I had an accident. I later survived sliding down the road on my back at 60 mph without biting my tongue. Whilst I was being treated for the stroke, I had to have a second CT scan in case I had haemangioma on my brain. If it had been present I couldn't have had clot-busting treatment, and I would either have died or been significantly disabled. The EP who recommended that I shouldn't take an anticoagulant, never considered the risk of haemangioma on my brain if medical intervention was required subsequently.

I'm delighted to be here to be wise after the event 😊

[Hidden]

As I've written before, there are no absolutes so given that I met or exceeded all the requirements to avoid a stroke other than exercise induced AF, the risk of a stroke was low. It was only scored at 1% due to the population average of 65 year olds. I am being wise after the event, so that retrospective knowledge may help someone to make a decision. When I had a near-fatal reaction to dronedrone and amiodarone the reported occurrence was 0.06%, but the Royal College of Physicians of Edinburgh thought it sufficiently significant to publish a paper by one of the Consultants responsible for my treatment. The Royal College of Physicians report that the cause of 25% of strokes is initially unknown, and then lists a number of possible causes including AF. By all means make a choice not to take an anticoagulant, but do it with as much information as possible, particularly if you have health issues that make a stroke more likely.

[Hidden]

I've mentioned before that before the stroke I was a patient rep on the board to consider revisions to the anticoagulant Patient Decision Aid. None of the specialists at that meeting knew if the risk year on year remains the same, increased incrementally or exponentially, as the clinical data was only for one year. Therefore decisions are being made on sketchy data. My stroke fell outside the expected range.

[Jans5]

The fact is that anticoagulation whilst cutting your risk of an ischaemic stroke by two thirds does increase your risk of a haemorrhagic stroke. The stroke risk calculators take this into account and recommend anticoagulation at the point that one risk outweighs the other. Latest research has suggested that the point awarded for being female should now be removed and hopefully as more research is carried out the calculators will become more accurate as time goes on. But it will never be 100% accurate and even without AF or other factors people will suffer strokes. No one wants to take drugs if they can help it. I found using the Qrisk score 2017 which tells you your risk over 10 years out of a population of 100 people with the same risk factors as you helps me out my risk into context. Also stroke UK gives you information about all stroke risk not just that related to AF and advise about reducing the risks.

[Hidden]

Like you have had my first real AF attack necessitating 4 hours in A&E. I have had AF for years and an under active thyroid. I have tried Warfarin but was in range less than 50% of the time. As we too spend months away each year in our Motorhome I was so glad to be put on Pradaxa ( Dabigatran). No side effects although cost is prohibitive if you want to spend more than three months out of the country. Di

[kkatz in reply to Hidden]

Can you elaborate on cost prohibitive.cost of the drugs? Or insurance cost. We spend 2 months then return to UK for a couple of weeks & back out for 3.of course with a 2.5 hour flight not difficult to make a trip home.

Kathy

[Hidden in reply to kkatz]

My Dr will only give me 3 months supply. Dabigatran was £85 a box in France a couple of years ago. Spent £370 in all for a further three months and the French refunded £14.30 for my visit to the Dr.

Di

[Hidden in reply to kkatz]

There is an online article by an NHS Trust that quotes an anuual cost per patient of £10 for Warfarin and just over £600 for a NOAC that I think was dabigatran. The cost to the public will clearly be more. My local GP Practice will only prescribe a month at a time, and considering that hospital pharmacy can run out of dabigatran, it's hardly ideal. My Consultant Neurologist said that dabigatran was a good drug for me to take, so there's no contest.

[doodle68]

Hi kkatz I like this little video about 'Risk in AF ' by Dr Gupta , it sums it up nicely...

youtube.com/watch?time_cont...

With regard to Warfarin or NOACS being prescribed , under the NICE guidelines you should have a choice . I think with regard to cost, there may not be much in it because NOACS don't require costly regular monitoring. Warfarin was not mentioned when I made the choice earlier this year.

[kkatz]

Great video.

[Hidden]

Hi Katz. If anyone was hard to convince it was me. PAF diagnosed 1 year ago. 72 Female Just seen EP privately as NHS wouldn't refer. Worth every penny. He said my stroke was 1 to 2% as I have no other health issues but still advised anticoag's. As I'm very tiny and 52kg he allowed me to take a smaller dose of Apixaban as the full dose was too much for me so I relented and started taking them last week. We have just booked a years rental in Nerja Spain thanks to my mother's who has just died aged 98 who also had AF and in her words what's the point worrying about something you can do bugger all about ( her words ) just shut up and get on with it. SO I am. I'm sick of worrying about what might or might not happen. My point is that it took a year of fighting with myself about medication and I did it anyway eventually. What a waste of a year and wasn't I lucky that nothing did happen. Have fun. Take care and enjoy your hols . Moreen.

[Bagrat in reply to Hidden]

Spanish Health Care is excellent.

[Hidden in reply to Bagrat]

I know Ba grat. I spent 9 days in a hospital in Malaga with acute pneumonia. Carnt praise them enough so I have no fear about having AF as I know I will get excellent treatment IF I needed it. Moreen

[kkatz]

Hi not sure if this is the place to post an update but here goes. With all the support & advice on here I Knew what to expect but I just got more & more stressed and I was really climbing the walls waiting to see the nurse specialist & I normally take it all in my stride most of the time. I just totally accepted his prescription for edoxaban 60mg. Heart is quite healthy . Advice keep taking the tablets, lose weight, healthier lifestyle & come back in 6 months . I will be away in 6mnths so has made it 7 months. Here we go folks and thanks again to everyone who helped.

Kathy

[Rellim296 in reply to kkatz]

Yes, adding an update to the end lets us all read what's above without ferreting for earlier threads.

That all sounds OK. We don't see complaints about Edoxaban. Good luck with the weight loss. Most of us find watching what we eat and do has many positives and quite a few of us have to thank AF ever so slightly for improving our general wellbeing.

[kkatz]

Now been on Edoxaban for 13 days. I am experiencing swollen ankles. I really dont know how much to worry about this. It is uncomfortable from about 5 pm but I can just about ignore it. I have by yearly check up for my heart & Bp next week & I will have all my bloods taken. then back to docs for results & follow up . I am hoping that the doc is happy for me to stay on the edoxaban as I am off on extended hols 25/10. Any one had any experience with swollen ankles on edoxaban & ideas for the swollen ankles.