Newly diagnosed with PAF 31year old l... - Atrial Fibrillati...

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Newly diagnosed with PAF 31year old looking to seek advice and try to understand / learn more about this.

TJ1987 profile image
27 Replies

Hi all,

So had a rough ride since 5.30am Monday morning waking up thinking I was having a heart attack my heart rhythm was all over the place sweating profusely. This was by far the worst I've ever felt previously I've had flutters of some sort and then I seem to get the shakes but I've always put it down to an anxiety attack or panic attack but it's usually always been whilst I've been asleep or if I've awoke and then try to get back to sleep.

After a trip to A&E and an overnight stay and after a dose of Bisoprolol I felt much better yesterday and my heart rate had returned to its normal rythym overnight. During my stay at hospital I'd had an ECG and also an ultrasound and I was of course hooked up to a heart monitor throughout.

I am now left feeling very shook up by this event and feel like I'm a walking timebomb waiting for it to now happen again, I know that I shouldn't think like this but it's very hard to just simply go back to normal or try to forget about it. Have any of you got any ideas suggestions for coping in the early days. I've been told that if I go into af again then to take the Bisoprolol but I don't have any way of measuring heart rate i.e by a device and I'm worried if it's not actually going that quick that I then slow it down to much by taking the meds have any of you got any advice for checking pulse etc.

Sorry for rambling on I'm just feeling very down about the whole thing and I'd like to try to understand / learn a bit more and hopefully hear some of your stories or coping mechanisms.

Regards

Dan

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27 Replies
Chicohamilton profile image
Chicohamilton

Hi Dan - I was like you - i had an episode of AF at 35 brought on my work, stress and alcohol. Likewise I was in hospital overnight on digoxin drip. ECG,ECHO and blood tests. I was released when back in normal sinus rhythm. I was terrified for weeks but eventually forgot about it. I lead a very active normal life to the full until last year - 30 years later it returned. So relax - did you trigger the episode with too much alcohol - is there a trigger that you can identify? In the meantime, get yourself a Fitbit charge to check heart rate to ease your mind. You will be fine - avoid stress and triggers like excess alcohol etc.

Best wishes

TJ1987 profile image
TJ1987 in reply to Chicohamilton

Thanks Chico I'm not sure if there is a trigger I can identify yet, I've Immediately stopped smoking for one, I never drink that much anyway so I don't think it's that I had had one beer on Sunday but nothing excessive, I do like coffee but again it's usually nothing too excessive and from now on ill switch to de-caff. I have recently left one job after over eleven years and started a new one so I'd just done my first week perhaps some stress and anxiety is the cause, I wouldn't say I'm massively overweight at 85kg I could probably do with losing a few pounds and being a bit more active but I was very active etc up until the run up to us having our baby.

CDreamer profile image
CDreamer

Hi and welcome. It is a huge shock to anyone and I think that most if not all of us on this forum will have been in a similar situation feeling, scared shaken and frightened of what the future may hold.

There are things you can do to help yourself and one of the first things that help is to learn about AF as knowledge is power and one of the best place to start is the AFA - heartrhythmalliance.org/aa/...

Go to Patient Resources and lots of leaflets to download with lots of information.

Read previous posts - find out how many others cope. I did a talk to newly diagnosed patients Dec 2016 and will be repeating the talk this spring - our hospital arranges for an Arrythmia Patient Day to meet the Arrythmia Nurses, one of the EPs (Electrophysiologist) and to ask questions - the AFA has a list of groups around the UK.

Know that AF can be controlled and that you taking control and being an agent in your own healthcare is important so lifestyle really matters! Alcohol, being overweight, smoking, lack of exercise, sleep or lack of, stress, what you eat can all have an impact so those are things you DO have control of.

There are lots of monitors but the one mostly talked about up until now - there are a few new ones coming through - is the Kardia - AFA approved and tested -which will take an ECG and tell you whether or not you are in AF. My doctors have always been very enthusiastic about this device as I can email a trace to them in an emergency and it keeps a record of all events. Available on Amazon.

I’ll post a link to the notes I posted after my talk which suns up what people on here have found useful, especially in the early days.

Know there are always people here who are kind, supportive, know what AF is like and how terrible it can make you feel, some are very informed and are doctors and cardiologists themselves - look out for Dr Gupta’s videos which are very informative.

Best wishes CD.

TJ1987 profile image
TJ1987 in reply to CDreamer

Thanks for the info CDreamer much appreciated. I've instantly given up smoking and I'm going to be looking at lifestyle i think it may be from a stress or something similar trigger but I can't be certain. Thing I'm most worried about is how to deal with another episode when / if it happens. I'll certainly be looking at the links you've given me and anything else I can to see what has helped / worked for others.

CDreamer profile image
CDreamer in reply to TJ1987

Managing stress is one of the biggest factors - dealing with episodes when they appear is about practice and not reacting with What if.....thoughts - I found that distraction worked well for me - I had to just go rest up - so I plugged in my earphones and listened to something - podcast - audio book - Calm meditation etc etc.

Speculation = rumination = stress = exacerbating AF

Acceptance = stay in the moment = developing coping strategies

We can all see your replies so you don't have to repeat yourself - great 1st move - stop smoking - I would suggest focussing on moderate exercise next.

I found Dr Chaterjee's 4 Pillars of Lifestyle book full of helpful advice, easy to read and good chapter on Stress & Exercise. His most recent book on Stress has very useful suggestions on how to manage full working/family/personal life to help manage our stress levels.

drchatterjee.com

Hope you find it useful along with talking to others here in a similar position.

Slim2018 profile image
Slim2018 in reply to CDreamer

Dr Chaterjees book is superb. Its all about little steps. I recommended it to my GP and he has become a devotee and recommends it to other patients. Even after a month since I stopped taking medication and have had the Ablation and Cardioversion I still wake up most mornings with massive feelings of anxiety but I am sure it will diminish. Good luck.

Alessa69 profile image
Alessa69 in reply to Slim2018

I am a HUGE fan of Dr Chatterjee, his wisdom is superb. Thanks to this forum I also follow Dr Sanjay Gupta On York Cardiology. Explains thing simply, far better than the Cardiologist/ EP that I have known for 20 years, which was how long it took me to get A Fib diagnosis

Thats rough luck, we are seeing more and more younger people with AF I think.

You can check your pulse for rate and rhythm and you should be able to work out if you are in AF, simple two fingers on your wrist, or if you prefer, like I do, the side of the Adams apple.

Taking bisoprolol with a normal HR won't kill you, it will slow you down though, my HR whilst on bisop went as low as 34 and I think I'm still alive.

AF WONT KILL YOU, that's the one to remember, it will make you feel like cr@p, anxious , angry and many other things.

You can get a Kardia, but I think they cause more worry than it was worth (thats only my opinion though)

Lifestyle changes have been shown to reduce AF burden , so stopping the fags is a good start. Stop the caffeine, and alcohol, Chinese food (MSG) can be a trigger, it is for me >

As you woke up with this, you may get tested for Sleep Apnea, this and AF can go hand in hand

Good luck on your AF journey

cat3 profile image
cat3

Hi Tj. I was newly diagnosed in October so I really feel for you. In Nov & early Dec I was worrying about tying up 'loose ends' as I was convinced my days were numbered.

But (backtracking) it was interesting hearing that your attacks are in the night time. 30 years ago I developed Tachycardia aka SVT (an electrical short circuit affecting the lower heart chamber) and it always happened in bed, before falling asleep. The trigger, besides stimulants, can be posture changes, which would explain the night time attacks. After a few years I started on Flecainide which has kept me free of attacks ever since.

30 years on I started with AF, and symptoms were uncontrollable and more or less constant. Like yourself, I had several A&E visits and a couple of admittances but, eventually, the meds were prescribed and my life's my own again.

Take regular exercise to de-stress, keep off the ciggies and caffeine and don't be afraid of asking questions which concern you.

You will get to grips with this Tj. I though I never would, but lovely folk here told me otherwise and were true to their word ! Cat x

in reply to cat3

This sounds like vagal AF (at night, after cold drinks, meals etc. and the heart doesn’t go really fast). Beta blockers are not effective with this sort of AF but flecainide is. This would explain the improvement of your symptoms.

cat3 profile image
cat3 in reply to

The AF was daytime ; it was the SVT which came on at night. With AF I was having constant rushes/jolts to the brain and it transpired I'd been prescribed too many beta blockers (both metoprolol and felodipine).

After the felodipine was reduced the symptoms abated and now I only have occasional palpitations. I've have to have beta blockers to stabilise high blood pressure for over 30 years though.

planetiowa profile image
planetiowa

I had my first AFIB event at night and was woken up by it while sleeping. I too thought I was having a heart attack and went to the hospital. My doctor did put me on a beta blocker for slight high blood pressure and then I didn't have another AFIB event for 2 years. From then on I had one maybe every year or two. Everyone is different but I seem to have the vagal type and it is very sensitive to stomach issues. Eating a big meal before bed, heartburn acid/reflux, drinking (liquid, not alcholol) too much or too fast (and especially bending down or forward after drinking), lying on my left side, etc. Mine doesn't seem to be impacted by stress or caffeine while a lot of other people are. The longer you go without an AFIB episode the better you feel but once you have another, I get that same walking timebomb feeling for a bit. I think since I'm on a beta blocker, when I do have an AFIb episode by heart rate doesn't go up that high anymore so its not as concerning as it used to be.

Hi TJ,

Lots of good advice from others and at risk of throwing you into 'information overload', and by way of a little research project aimed at widening your knowledge of AF and nothing else you might like to consider reading up on the Vagal Nerve or some sources have it as the vagus nerve.

Simply put, its a nerve in the central nervous system which acts like an information superhighway between many organs, most notably there is a connection between the heart, digestive system and the brain.

Effectively what you eat can cause an issue with the digestive system which can then manifest itself with a heart issue. Similarly what you eat and when you eat it (or drink) can impact on your sleep - for some of us eating large and late can impact in a number of ways and indeed many many hours later, while we are asleep.

For others of us we find (although its only happened to me once) that sleeping on our left side can result in an AF event kicking in.

If you 'Google' Vagal nerve diagram you'll discover a number of graphics which illustrate this nerve and how it wanders through the body. Actually, the term 'vagal' simply means wandering.

The problem with modern western medicine is that it is totally compartmentalised, whereas the body is actually a holistic being with shedloads of components functioning ( as one finely tuned unit) and the central nervous system is a major player here.

For instance, even today, you'll seldom get a cardiologist or EP to acknowledge the role of the vagus nerve in context of the heart BUT you are very very likely to get a Gasteroenterologist to have an understanding of its role in the body.

Monitoring yourself can be useful unless you are afraid of becoming addicted to the process........ a simple App for your phone can give you an ( not particularly accurate) indication of your heart rate if you are digitally inclined, but then taking your pulse and measuring beats per 15 seconds is another way taking pulse and is an effective way of finding out how strong and regular your heart beat is. Again if you are digitally inclined there are blood pressure monitors available which will give you BP, HR and confirm that you are in AF and they have a memory facility for retaining the data. Omron and Microlife are two makes that come to mind.

Back in the day it was actually my erratic and (later dramatically) falling BP that got me into my GP and straight away into A & E rather than feelings in the chest or HR which resulted in AF being diagnosed. In actual fact my main feelings were that I was going down with flu BUT I never did. Nothing to do with heart at all.

Which is another feature of this little' lovvie' of an electrical condition. It can be, and is, all things to all people. We all have common themes and threads BUT it just manifests differently in all of us. Its total mongrel and it seems now to no longer discriminate between its 'patrons' ........... it'll hit at any age, doesn't discriminate with gender, doesn't discriminate with occupation - anyone from ordinary folk, to retireees (both early, recent and long term retirees), to bus drivers/ truck drivers, to athletes (marathon runners and distance cyclists) and in cases to fighter pilots.

I am on 5 mg of Bisoprolol daily taken at night O( not as a pill in the pocket mechanism). 95% of the time it does the job and holds my HR to around 65 bpm. Occasionally it gets carried away with itself and my HR drops to 46 bpm ( which is too low for a 15 stone, 6 foot tall male). How do I cope, well I'm feel so totally crap I go to bed, hug a hot water bottle to my chest and have a mug of hot, sweet, coffee. I then fall asleep for 3 or 4 hours and wake up feeling as if I'd done 50 rounds with Sonny Liston and within a few more hours I'm normal. Not approved by any healthcare practitioner/professional but it works for me. Interestingly, this event always, ALWAYS, occurs when I'm in relaxing mode at home, NEVER, NEVER when I'm working.

So that's my take on it. Good luck .......... no worries, you'll be right !

May the force be with you.

John

TLB72 profile image
TLB72 in reply to

Hey there John ~

I have been having odd symptoms that I relate to my heart for about 3 - 4 years and have been addressing it with doctors since then. I am in the midst of trying to figure out a true AFIB diagnosis. I have had multiple heart monitors and the one I had in August alerted the cardiology office that my heart was in AFIB and the on call Dr/PA started me on Eliquis and Metoprolol ER. I had to quite the Metoprolo due to the side effects. At the follow up appt my Dr informed me that the AFIB episode only lasted 12 seconds so truly did not meet the criteria of AFIB, but kept me on the Eliquis to be safe and ordered another 30 day heart monitor to verify any more episodes. This time at the follow up appt she stated that that the monitor did not catch any episodes of AFIB, but did catch some other arrhythmia...premature heart beats and such...my appt was very rushed so didn't get a lot of details which is very frustrating when dealing with your heart. She told me I was no longer at a greater risk and that I could stop the Eliquis. I inquired if I could go back to taking a 81 mg of Aspirin and she said sure.

Five days after my appt I was taking my blood pressure before bed as directed, which is usually in the range of 110/64 to 98/54, but this time it was 75/54...yikes.

You said that your dropping blood pressure was what brought you to your diagnosis of AFIB and what I am wondering is was the low blood pressure a side effect of an episode of AFIB or just a coincidence?

Sorry for the rambling on. I've never posted in a forum so new to all of this.

Trish

in reply to TLB72

Hi Trish,

Yeah, well back in the day (of falling BP) - in those days leading up to my diagnosis of AF my average BP was around the 136/80 ish or 90 ish mark. On my 'big day' once I began to feel unwell with flu like symptoms my BP behaved very erratically all day, I had an Omron BP monitor and the readings were all over the place, sometimes they gave the regular average reading, sometimes shedloads of error messages .... but all the while as the hours went on the trend line readings were downward bottoming out at around this 80/50 mark ........... at which point I rang my GP and got an appointment with him immediately after which he rang the hospital and got me admitted immediately.

BUT REMEMBER .... at this point I thought I had flu because I had no feelings in my chest of any improper activity, the only clue was falling BP. I'd led a healthy life no major health issues apart from the usual stupid DIY mishaps.

However, I had had palpitations for some 2 and half years before my 'big day', usually around 8 am ish but occasionally at other times. These palpitations persisted but we could never get them on an ECG. I was a regular bus driver at the time so it was almost impossible to get to my GP because of my shift work/ driving hours. The occasions I did get to have an ECG trace it showed nothing. Still and all, nobody suspected anything my GP never even suggested wearing a monitor for a few days. Also, for about the same time I began medication for high blood pressure.

Apart from that, I simply did NOT present as a patient with a heart condition.

With the benefit of hindsight I believe if we could have captured these palpitations on an ECG - plus- captured the day of falling BP on ECG it would have picked up a heart with crazy but not necessarily chaotic electrical activity .... in other words, and to try and answer your question, it was a heart trying to lurch into a state of AF but not getting there.

Once hospitalised I was kept in for some 6 days while they did all manner of tests and scans on the heart with the final verdict being paroxysmal AF, but, nothing structurally wrong the the heart except for an enlarged left Atrium. (Potentially, the source of a stroke). Then came the humdinger in the Consultants write up ........... "could be in AF and not be aware of it", in other words I may be asymptomatic.

I guess the point is that this condition is or can be a deceitful little 'lovvie', it is able to present itself in so many different ways and sometimes disguising the real issues. Its all things to all people.

Hope that helps Trish.

John

I would suggest that the chest pains need to be looked into. AF, particularly in younger people, can be associated with athletics- do you fall into that category?

Aus19 profile image
Aus19

Hey TJ1987, I was diagnosed with AF and sinus node dysfunction after having a mild stroke last October. I'm 51, non-smoker, was in great health, middle-distance runner, hiker, moderate alcohol intake, no family history. So here is some good news for you: AF doesn't kill but strokes certainly do. I was incredibly lucky that mine was so mild. Now you and your doctors know that you have a heart condition, which means that your stroke risk can be assessed, either now or when you get older. You might need to go on anti-coagulant medication at some point. So your AF can be interpreted as a warning sign. Your stroke risk can be managed with medication - but if you never knew that you had AF, then you might be at a greater risk. That's the positive news.

CDreamer profile image
CDreamer in reply to Aus19

A good reminder of the importance of anti-coagulation.

gemmaholden profile image
gemmaholden

Hi Dan,

Thanks for sharing. It’s crap isn’t it. I was diagnosed 2 years ago, but it took 10 years to get there.

Not sure on my triggers but usually wake up in AF you when I’m least expecting it... had this ever happened before for you?

I had an ablation... after meds didn’t work out for me. But still have minor episodes.

I know it’s mega scary! Stay in touch... I found this place very helpful, everyone is friendly and it’s nice to talk to people who understand.

Best wishes

Gemma

JanettePearson profile image
JanettePearson

My story is quite similar. I used to get a lot of ectopics then had my first full blown AF episode aged 37. I was in hospital hooked up also and had all the tests. However, for the following 23 years I carried on life as normal (albeit with plenty of ectopics still) raising my family, going to the gym until aged 59 I had another episode. I am now 62 and know that stress is a trigger as well as alcohol and caffeine. Avoiding stress is very difficult but I no longer drink and avoid the caffeine, which is also in chocolate unfortunately!! The advice I would give you is try to find ways to relax, try not to worry, watch your weight and eat healthily. Also keep fit but be sensible. I do lots of walking and aqua fit. The thing I find most difficult to avoid is stress as I have my 92 year old mother living with me and it's affected my health badly but I just have to deal with that. There will always be things you just have to deal with but you can manage AF and lead a perfectly normal life!!!

Flyer2820 profile image
Flyer2820

Hi Tj1987

I know it's very alarming when you first get af but stress can be a contributory factor so try to keep calm. A finger pulse monitor is cheaper than a fitbit, it's what I use to monitor my heart rate and it will give you your bpm and will show if your heart is irregular. They cost around £20 on line and are well worth investing in. Also the xiomi minband 2 is worth getting again around the £20 Mark, it does the same as the fitbit for a lot less money. I use both with great success.

Good luck and try not to worry.

Regards Flyer.

Flyer2820 profile image
Flyer2820

Sorry Tj1987 the finger pulse monitor is a xiomi miband 2 not minband.

Regards Flyer.

Hi sorry you've had such a rough time. I always we t to a & e because the resus doctors told me that was the right thing to do. That way you don't have worry about how much to take and what your hearts doing. They are there to help us. Have youbeen refered to a cardiologist or EP? X

looby1660 profile image
looby1660

Hi there, it’s a worrying and confusing time to begin with but the longer you have it, the more it becomes normal to you to be this way. I will say and I think most people here will accept that fact, once you’re on the AF path/it’s started and it’s in your life, it will always be. It becomes about damage limitation and management of it.

I was 26 when I first started having the ‘funny episodes’, was advised to hold my breath to kick things back into normal rhythm, which worked for about 4 years. My first real episode of AF I woke up with in the morning as many have described. I was put on the Bisoprolol which kept me stable heart wise for 6 months until another episode, same mo. Bisoprolol was not good for me though, I had some severe weight gain due to the ‘slowing down’ of everything, I have a naturally low BP so after the second episode they took me of it.

I had 2 years of Amiodarone which caused me no end of health problems, lord knows why they still prescribe it. I met somebody else accidentally who had AF and recommended that I ask my consultant for a change to flecainide. I’ve been on this now for the last 24years. I’m stable enough that I don’t see a consultant anymore, haven’t for 15years.

I occasionally had periods of complete exhaustion, so I’d just rest and wait for it to pass. I discovered 5 years ago that I have some food intolerances, which seem to have been the cause of these lethargic episodes (combined with the AF). I am better than I’ve ever been now, and I can always tell when I’ve eaten something I shouldn’t as I get the complete fatigue thing so I try to be good!

I was told once, you should be able to lead a normal life with managed AF. If you find the right treatment for you, keep that as your mantra and don’t let anything stop you doing what you want to. I’ve tried to ignore it mostly! As long as I keep taking the pills, everything is fine. I’m sure you will be too.

TJ1987 profile image
TJ1987

Thank you so much for all of your replies I certainly don't feel as alone as I initially did. The big thing for me to take away from this and all of your replies is that this can be managed and it can be dealt with to some extent through use of meds as and when required etc and also through making some lifestyle adjustments. For me I think it could have been an accumulation of factors we have a 6-month old little boy so this has been a big change to our lives recently, I've also just Changed jobs after eleven years with one company and I think these along with the usual everyday stresses of life have perhaps set me off or helped me on my way.

Looking back in the past I've had what I would call panic attacks or minor palpitations again usually always been in the middle of the night and these have gone back into my early twenties perhaps even earlier so I'm now wondering if it's all linked as i know many of you mentioned similar occurrences.

With regards to being referred to a cardiologist or EP I'm waiting on the GP receiving my discharge papers from the hospital and I know they do want me back to do a treadmill or endurance test and then a review after this. Is it worthwhile pushing for an appointment with an EP ?

For now I'm reducing caffeine intake and going mostly de-caff where I can.

I've stopped smoking and I'm also going to start watching what I eat and controlling this better and getting back into some form of exercise

Lorlaw70 profile image
Lorlaw70

Hi Dan - this forum is fantastic for support and advice. When I was first diagnosed in Sept last year I too felt like my life had stopped, I was scared to go out or do anything that would bring on my heart going haywire. I tried everything, my anixety went through the roof. My friends and family didn't understand it as to them I looked fine and I felt very isolated. This is where this forum gave me a feeling of not feeling isolated.

I found mindfulness great for me and I also did acupuncture for my anixety.

I go in for an ablation next week and I am hopeful that I will be able to return to work and start living again. My AF has become permanent and my quality of life has been pretty poor. However this is not to say that it will happen this way for you.

Keep using this forum and try to find techniques in relaxtion.

Take care

Laura

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