Diagnosed today : Hello all, So I’m... - Atrial Fibrillati...

Atrial Fibrillation Support

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Diagnosed today

Lahodges10 profile image
18 Replies

Hello all,

So I’m here in this forum after years of odd symptoms. I’ve been on the thyroid forum for a little while (they were so helpful and I’m now undergoing investigations thanks to their help but still couldn’t work out why my heart was always beating so fast) and now I’m here...currently on holiday at Center parcs, had another one of my ‘funny turns’ whilst doing pottery...the nurse here was fantastic, as was the paramedic that managed to catch the funny turn on an ecg and also the doctor at the local hospital who has diagnosed me with atrial fibrillation within 30minutes of arriving. I have had years of symptoms and ended up in a&e on so many occasions. Since august I’ve been so quite unwell, lots of funny turns, rapid heart rate waking me up, heart flutters, jittery and finally a name for this horrible thing that’s been terrorising me.

I’m so thankful to finally have an answer, a bit scared as surgery has been mentioned but will await to see doctor at my local hospital. I’ve been started on Verapamil 40mg x2 a day to start. Is anyone else on this medication? How do you find? How quickly does it work? I am hoping I can feel a bit more normal soon, I’ve been so miserable. This AF has ruled my life for too long!

I am sure I’ll be on this forum a lot now. Wishing you all well,

Lauren x

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Lahodges10
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18 Replies
bantam12 profile image
bantam12

If you have thyroid disease, either hypo or hyper your heart symptoms may well be connected to that so once treated things could settle down.

Hello Lauren and welcome to “our” forum. I’m assuming you already know that there is a strong link between AF and the thyroid, if not, always make sure you doctor/cardiologist and or EP are fully aware of your health history

The next thing is to read all you can about AF and the following link to the AF Association webpage is a good place to start.

heartrhythmalliance.org/afa...

Once you have had a chance to digest some of the information, please ask us if there is anything you need help on. A couple of things to remember, there are almost 1.5 people diagnosed with AF in the UK and the majority manage to lead relatively normal lives. Provided your AF is controlled with medication, it is not life threatening but make sure you understand that AF increases the risk of stroke so check out CHADsVASc scoring and the use of anticoagulants to substantially reduce the risk.....hopefully this will have been discussed already with your doctor.....hope this helps for starters.

Hi Lauren,

As 'Flapjack' says, do try and read all you can on AF and learn all about it. It does help.

I had some 2 and half years of palpitations and every time I had an ECG nothing showed - until my AF day, 6 January 2010. I woke up feeling unwell. As the morning progressed I felt I was going down with 'Flu. Then I found my blood pressure was dropping ... it bottomed out at 76/50 - I decided then to phone my GP. Within hours of feeling unwell I was admitted to A & E where paroxysmal AF was diagnosed.

I was eventually sorted by medication however, months later I was still getting AF events but I noticed they always followed food I'd eaten.

By Sept 2011 I consulted a Nutritionist, acted on diet/food plan I was recommended and eventually it all subsided. I have now only had one AF event since April 2015 ( in February 2018, as a result of sleeping on my left side) although I have had a few occasions of rapid heartbeats this year, but no AF - all following food I shouldn't have eaten.

The reason for explaining all this is for you to understand that AF is all things to all people. Some people are affected as you are, others are affected by alcohol, tea, coffee .... all different ...... and because its a hydra headed monster not all members of the medical profession, at least at GP level are fully aware of it or understand it. It does seem, from 10 years of being on this forum that cause and effect seems to vary with all of us. It also seems that it is not possible to 'cure' AF ...... it is possible however to restore some degree of quality of life.

You will often read on this forum that the Vagal or Vagus Nerve (VN) can be dysfunctional and tip people into AF. This is suggested reading for you. Also while you are at it look up online schematic diagrams of the VN and you'll see how it functions within the body.

Do take note of 'Flapjacks' comments on anticoagulation and CHADsVASc.

May the force be with you.

John

irene75359 profile image
irene75359

Lauren, sorry you have the need to join our forum, but you have come to the best place for help and guidance and AFib companionship. There are many here who are really experienced so if you have any questions just post.

And I would just double underline what the others have said regarding anticoagulation. When I was diagnosed my GP had me on warfarin the same day even though I was borderline in my CHADsVASc score at the time. You don't have to wait to see a consultant for this step, your GP can prescribe this.

Let us know how you get on. Best wishes.

wilsond profile image
wilsond

It can be such a relief to finally be able to Name the Beast! You have come to the right place,others have beaten me to it with the good advice above. Agree with the anticoagulation advice 100%.

Most important. Also reiterate looking at the fact sheets on here,very good.

Best wishes xxx

CDreamer profile image
CDreamer

Hi Lauren and welcome. All good advice above - there are a lot of people who live with chronic AF and a few who have one or two episodes and no more and really you won’t know which you are for a while but whilst AF is uncomfortable - it is not an emergency in itself if you are otherwise healthy and fit. Get your thyroid meds sorted and you may well find it will limit the AF - hope it does for you.

If you look back at my posts - I started here believing I could understand and beat this AF beast - 5 years after joining this forum I am now a lot more accepting of it. It just is - there are many ‘causes’ but looking at general well-being rather than a mechanistic approach is now being embraced so if you can keep yourself otherwise well and eat well, exercise moderately and keep yourself stress free, you are giving yourself the best chance of eliminating these episodes.

AF is a marathon, no-one knows why it happens - they know the mechanics of how it happens - but not why it happens so therefore treatments are to relieve symptoms and are not cures and you will start to understand that it may change your life - but sometimes for the better both physically and psychologically although right now you may not believe that as the overwhelming emotion about having something wrong with our heart is anxiety - and that’s the beast you can do something about and sooner rather than later as stress is the biggest antagonist for AF.

I Echo the anti-coagulant caution- stroke is the biggest risk of anyone with AF and one that can be reduced with anti-coagulation so do ask your GP and your specialist.

Best wishes and keep reading the posts which is a great way to learn and posting and replying. CD

CDreamer profile image
CDreamer

PS - Verapamil is a rate control drug - it won’t stop the AF but is designed to control your fast heart rate. I find it a good idea to always do your own research on any drug you take - know what it does and what it may react with. Make friends with your local Pharmacist as they are the people to help you with this and to advise about meds both OTC and prescribed you should avoid. Always ask your Pharmacist about OTC meds and never assume because they are easily obtained without prescription they will be OK for you. No-one tell you this - until after the event.

NSAIDs are one such med all people with AF are advised to avoid, especially if you take anti-coagulants.

Rosemaryb1349 profile image
Rosemaryb1349

Hi Lauren, I can see you have received all the best and most important advice already but to answer your question about Verapamil I can tell you that I was switched to a slow release version of this calcium channel blocker last June. I had been on a gradually increasing dose of Bisoprolol for several years but it wasn't working for me and was turning me into a zombie. So I asked my Cardiologist what else there was we could try. He put me onto Verapamil 120 mgs once a day and so far so good, in fact last week he wrote me off unless/until the monster rears its ugly head again. I understand that Veapamil does a little bit of both rhythm and rate control. I also take an anti coagulant of course. Hope you make some progress soon but it can be a long journey until you find what suits you best. Good luck. Rosie

Lahodges10 profile image
Lahodges10 in reply toRosemaryb1349

Oooh thank you, Rosie. That’s really good to hear! I am a bit nervous about taking them and they are sitting next to me now...I have to start somewhere though. So pleased to hear they worked well for you. Xx

Lahodges10 profile image
Lahodges10

Thank you so much for all your replies, they are much appreciated. I’m am reading them all through properly now.

Thank you all so much, Lauren Xx

annlynne profile image
annlynne

Hi Lauren, I hope now they have discovered the root cause, your medication will control the AFib . The doctors will keep a close watch on you. I was early 50s when I was diagnosed and I'm 73 now. I tried not to let it control my life but made sure I kept my cardiac appointments and was meticulous taking the tablets. Carry on enjoying life Lauren (I had hypothyroidism too then the AFib was diagnosed after hospital admission ) best wishes Anne

Verapamil works within a half hour or hour. All it does is slow the heart down so that your episodes are less severe (take too much too quickly and you will get light-headed when you stand up). Try the following - it works for a lot of folks and may help you. It's free, and healthy to boot:

-----------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??

I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

PS – there is a study backing up this data you can view at:

Cardiab.biomedcentral.com/articles/10.1186/1475-2840-7-28

Lahodges10 profile image
Lahodges10

Thanks again for the replies...so much appreciated. Lots to take in...I also agree re sugar. Sugar, caffeine definitely triggers mine. Although the episodes that happen at night...well I have no idea...but they’re the worst! Xx

Hello Lauren, I'm so pleased that you have found this forum for advice and reassurance. I am also delighted to see that you have already been offered some excellent advice by the forum members. I work at AF Association, and if you have any specific questions that you cannot find the answers to here, your phone call will be well received by either myself or my colleagues on 01789 867502 or email info@afa.org.uk

You might also be interested to attend a patient support group meeting, these are operated around the UK, so if you'd like to let us know (perhaps by direct message - click my name and message me) where you live, I can signpost you to your nearest physical meeting.

The most important thing to know is that you are not alone with your condition.

afa.org.uk holds as much information as you can take in, so please do visit the website and learn all you can.

Please remember that we are here to provide information and support when you need it!

Kind regards

Rachel - AF Association Patient Services

Ianc2 profile image
Ianc2

Hi Lauren

Welcome to the crazy heart club - the good news is that it doesn't usually kill you but it does tend to change your lifestyle. How much nonstop steady gentle exercise do you manage to squeeze in during the week.? Mediterranean/ dash diet? Waist half your height? BMI of about 22.5? Smoke? lots of bubbly booze? All good stuff -It's making the changes that is the hard bit!

Lahodges10 profile image
Lahodges10

Hello! Thank you both for you replies. I guess you could say I’m not a traditional heart issue patient. 35, really fit, non smoker, rarely drink (can’t really as always tiggers an episode) good weight, I’ve not actually been able to do any cardio since August though as it always triggers the flutters...mainly yoga at the moment is the best,

but then looking online AFib just goes for who it wants! Feeling ok this morning, much better for reading everyone’s comments and advice. I’ve now looked at the AF association page and I’ll be in regular touch with that. I’m definitely going to make some serious changes.

I think my family are more anxious than me! I hope I can start to feel somewhat normal again. The weird jittery feeling is horrible and those flutters when your sound asleep...the worst! Xx

Faraday954 profile image
Faraday954

Welcome to the forum! Getting the AF diagnosis is no fun, but it was a relief for many of us to finally figure out what was going on. Hope you can get some questions answered here, it’s a great group!

Lahodges10 profile image
Lahodges10

Thank you! X

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