Hi my name is shona i suffer from afib - AF Association

AF Association

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Hi my name is shona i suffer from afib

shona13 profile image

Just diagnosed in January cant get my head round it and medication horrible

34 Replies

Hello Shona, I was going to say welcome to the forum but I see you joined well over 6 yrs ago. To help us to help you, is there a reason why you joined so long ago bearing in mind you were diagnosed just 6 months or so, ago. Maybe there are other heart related issues which we should be made aware of.

Thanks

shona13 profile image
shona13 in reply to FlapJack

Sorry flapjack wrote in the wrong place not used to this ive put it under where I introduced myself am no good with technology lol

Long storyFlapjack i started getting heart palpitations over 6 years ago and didn’t know what was wrong , after getting the palps often went to dr they said it was anxiety,i new it wasnt anyway went back to docs a few time same old stress anxiety, i eventually got sent for a 24hr monitor but i new nothing would show because i didnt have a fast heart rate during the 24 hours, anyway nothing i think docs thought i was crazy, fast forward January 2021 routine appt at docs she took my blood pressure and asked me if i felt ok i said yes she said your heart rate is up at 187. I think you should go to emergency thats when i told her ive had this for over 6 years

CDreamer profile image
CDreamer in reply to shona13

Hi Shona - unfortunately your story is not uncommon ie being told you are anxious.

Thankfully a diagnosis now means that you can look at treatments and lifestyle changes which may help ie: managing stress, sleep, breathing, diet & exercise.

May I suggest you read the posts here, research treatments on the AFA website & look at Lifestyle changes that may help.

You will find good recommendations here - The AFib Cure is well thought of by those of us who have read it, loads of information you can act on.

shona13 profile image
shona13 in reply to CDreamer

Thankyou I appreciate that 👍🏻

marcyh profile image
marcyh in reply to shona13

That closely resembles what happened to me. I was finally diagnosed almost 3 years ago.

Thanks for the additional information Shona, really helpful. You probably are aware, but one of the most important things is to have your stroke risk assessed and if necessary, be prescribed with an anticoagulant which significantly reduces this risk. If you have been following posts over the years you will know but Google CHADs2VASC to find out more or check out the AFA website, I’ve added a link which you should find helpful.

healthunlocked.com/afassoci.........

Given the current situation at hospital’s getting the help you need might be more difficult than normal, but it you haven’t already, you need to seek a referral to see a cardiologist, but preferably an Electrophysiologist because they are cardiologists who specialise in arrhythmias (of which there are several types). This is the best way to establish a treatment plan specifically designed to treat your condition. Most GP’s tend to prescribe a commonly used beta blocker such as Bisoprolol, which whilst it can be very effective, it can also for some, produce side effects which can be more unpleasant than the symptoms associated with AF. However, there are alternatives, and other types of medication which help control the symptoms without the side effects. It’s a bit of trial and error to get the balance right, but unfortunately GP’s tend to be limited in what they can prescribe which is why it is so beneficial to get a referral.

Apologies if you are familiar with all this, but it’s difficult to be more specific when posters provide brief information. It kinda becomes a guessing game and AF is often very complex. Hopes this helps, but please check out the link because as many say here, knowledge is power……

shona13 profile image
shona13 in reply to FlapJack

Hi flapjack sorry for not alot if info never usually put any post up but like to see them lol i must Thankyou for your information its great, i have had meds so many changes in doses at present im on the dreaded bisoprolol / edoxoban i was on entresto but not now i hate this afib cant get used to it but i know i have to, its the lack of communication with doctors that really gets to me its a case of you have afib you need to take medication oooofffftttt

Karendeena profile image
Karendeena in reply to shona13

Hi Shona13 I was o bisoprolol and flecainide with awful side effects. Paid to see an Electrophysiologist last November and he changed my meds to Sotalol and Apixaban, so far my afib is well controlled with only the odd ectopic beat. Well worth going to see an EP they are the specialists. I was diagnosed this time last year, in fact I was in A & E with a racing heart exactly to this date.

Shona - apologies if you already know this! Edoxaban is an anti-convulsant and a first line of defence for anyone with aFib. I've not heard of anyone having problems with it particularly. Entresto lowers your blood pressure to take the strain off your heart, can make you light headed at first. Bisoprolol to slow your heart rate, many of us are fine on it, others not good at all ( me being one of them) it can depend on the dosage. I changed to Nebivolol and it's been much better for me HTH

shona13 profile image
shona13 in reply to Silvasava

Thankyou for the information i was fine on all medication then boom tired all the time sore joints no energy very low just not me and my family noticed it aswell sorry for moaning im just very low

Silvasava profile image
Silvasava in reply to shona13

Not moaning at all Shona, we all get down and disheartened and struggle. You've had good advice on here so at least you have an idea of a way forward. Hugs and good luck for the future.

shona13 profile image
shona13 in reply to Silvasava

Thankyou very much 👍🏻

The speed and amount of contact for a paroxysmal AFib survivor is minimal to non existent. Persistent AFib may be different but I’m a bi-weekly event of about 9 hrs each time.You are treated with the anticoagulant Stoke preventer and a beta blocker and that’s it, pretty much. End of story.

I’ve gone from very worried that I’m not being seen by the doc to now being relaxed that I’ve been dealt with and I can ‘get on’ with the rest of my life.

It’s never easy to be told to suck up the pills and changes and just “get on with it” but you will.

It’s all a matter of you finding your way, learning about yourself (we are all very different) and you will relax into the new you.

Good luck and stay cool. Keep hydrated and smile when you can.

Thankyou I appreciate it Dtay safe 👍🏻

Hi Shona.

I’m no expert but best advice I can give is book an appointment with a private electrophysiologist ASAP. I waited for ages and went through exact same process as you with being told I was anxious etc. Book a private consultation with an electrophysiologist and things will go SO much quicker. I used dr boon lim and he’s was exceptional and only cost me £250. Best money I’ve ever spent. Things progressed rapidly after that and I’m now booked in for an ablation on the 16th 😬

Good luck!

shona13 profile image
shona13 in reply to Elli86

Thankyou so much for your help much appreciated 👍🏻

Jim1954 profile image
Jim1954 in reply to shona13

Hi Shona, I had an NHS ablation in May for intermittent runs of arrhythmia after first seeing Electrophysiologist privately (£200). Now have perfect sinus rhythm after much prayer and a patient & skilled Electrophysiologist who spent 3hrs finding the rogue signals and ablating them. I'm thankful to him and to God for my healed heart. Now off Bisoprolol and Flecainide and will stop Apixaban if my next Echocardiogram shows normal heart function. Can recommend the private out patient appointment (like Elli86 does) to get the ball rolling. All the best. Jim

shona13 profile image
shona13 in reply to Jim1954

Thankyou jim that’s amazing im so pleased for you i will be looking into options Thankyou again. Shona

Dodie117 profile image
Dodie117 in reply to shona13

I too had problems getting diagnosed but when I did my EP gave me choice - meds route or ablation. No messing about! Chose ablation. Was on bisoprolol for 6 months whilst on waiting list. Had ablation 2013 and I am still free of AF. So don’t despair. There is life after AF!!

shona13 profile image
shona13 in reply to Dodie117

Thankyou this sounds great gives me a bit of boost knowing it doeas and can be fixed. Thankyou again Shona

Elli86 profile image
Elli86 in reply to Dodie117

Hi Dodie. Are you totally med free now? How old were you when you had your ablation?

Dodie117 profile image
Dodie117 in reply to Elli86

I am med free apart from anticoagulant. I was 63.

Elli86 profile image
Elli86 in reply to Dodie117

So 8 years af free. That’s great news. I REALLY hope my ablation is as successful as yours 🤞🤞🤞

Dodie117 profile image
Dodie117 in reply to Elli86

Yes, I am very lucky so good luck ☘️🤞

Hi Shona,

I highly recommend seeing your cardiologist and/or an Electrophysiologist. Your cardiologist can recommend the Electrophysiologist he or she works most closely with.

I had a similar situation as I had palpitations and a racing heart on multiple occasions over the years but none consistent. Looking back, I am sure I had AF events that went undiagnosed. I did have multiple heart tests and wore a Holter monitor for 48 hours. My heart is healthy and the monitor showed nothing. When you have intermittent episodes you can have normal EKG’s, exams and even negative results from the Holter monitor.

I chose to have an ablation as, if possible, I would like to discontinue the Eliquis. The procedure answered many questions. The doctor corrected 4 areas that were “misfiring”. He also found I had a genetic misfire (for lack of more professional words) and he ablated that as well. This is something I have had all my life and did not know it. Ablation was what found it. Since then, I have been fine; my blood pressure is good as is my heartrate. In 6-8 weeks, with no further events, I will be able to go off the medication. I have a loop recorder so if, after I go off the medication, the doctor sees an irregularity of concern, he will notify me and we will revisit the need for Eliquis.

I chose to have a loop recorder inserted just under the skin over my heart. For me that alone has given me total piece of mind. The doctor can see all missed beats, extra beats, my heart rate averages etc. He told me if I would rather I could monitor the information from my I-watch but I chose the loop recorder to ensure the most accuracy and consistency. (Thinking about it constantly causes me anxiety so I didn’t want to check my I-watch all the time for heart issues) I forget the loop recorder is there except if I feel something odd, I don’t worry about it. If the report the doctor receives (every 24 hours) shows something concerning, he will let me know.

Good luck. There are solutions out there and for irregular heart rates the best fix will come from a good Electrophysiologist.

Thankyou so much for all the information very helpful. Shona

Shona, have read all the replies. Two quick thoughts: Have you ever had a sleep study for Apnea? Also , how about acupuncture? I have a similar story to yours. It was discovered that I have a severe case of sleep apnea. I was put on Amiodarone YUK. Then I became so frustrated I tried acupuncture….. It really helped.

shona13 profile image
shona13 in reply to Idahohorse

Hi idahohorse never had a sleep apnea test never been offered never had anyone explain anything re afib, ive got more information from this forum all you guys have been amazing I appreciate this👍🏻 i am writing everything on a notebook so that i can ask questions to doctor thankyou again Shona

remember about the accupunture

Nothing much to add here as there's loads of good advice. But I will say 'getting your head around it' is one of the most important things. By doing your research and following up once you've made some choices gives you some empowerment. The hardest thing is the unpredictability and the next hardest thing is the lack of contact and information from the NHS - by and large. Not always and not in every region but we can simply be left with our pills unless we take action and advocate for ourselves. Doing this post was your first step - well done!

shona13 profile image
shona13 in reply to Singwell

Thankyou very much i agree. I live in Falkirk Stirlingshire Scotland I can’t-thank everyone enough for all the advice its made a big difference and i will take it all on board Thankyou again Shona

Completely agree. What medication are you on 😊😊

shona13 profile image
shona13 in reply to Mike-tyson

Hi mike im on bisoprolol Adoxaban and was on entresto but not anymore👍🏻

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