really scared

hello everyone, im a first time poster, ill try to give as much info as possible,

on the 15th april, i decided that my legs were aching from my bike ride the day before so went on a short run to shake the aches off, i havent run for months but thought a short run would be ok, on returning and about half hour after having a shower i noticed my heart was still racing a bit, thought nothing of it and went to work at 2pm

whilst in work i continued to feel a bit clamy and not quite right a bit light headed but nothing else, it was then i felt my pulse and it was erratic, not in any particular rhythm, i got a little worried about this and left work to attend a&e, when i got to a&e they put me on a ecg and pulse monitor, my pulse was jumping about from 80 to 115, the doctor looked at my ecg and told me my hearts rhythm was in af, they took lots of bloods which came back fine, other than i was borderline underactive thyroid to the point where they couldnt say if i was or wasnt, chest xray was fine, they gave me 2.5mgs of bisoprolol and within an hour my heart was back down to 80, however still a little erratic, i was discharged and told to have another ecg within 2 weeks with my gp and they referred me to cardiology as at 40 apparently im very young to have this

now whilst the staff at a&e were amazing with me ive come home not knowing what af is or the implications of it, i thought it would be a one off, however since doing some reading online i discovered it only gets worse, im now very scared of this and am a bit of a recluse afraid to do anything that may start it off,

i was told by hospital that theres a 10 month wait in my area for cardiology so ive taken the bull by the horns and paid to see a cardiologist who has a clinical interest in af and ablation techniques in 3 weeks time, however i just so scared of this now its having a real effect on my life, i havent been back to work and just lie in bed or sit around all day, can anyone shed some hope on my situation for me please

ps sorry about the long post

84 Replies

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  • sorry i forgot to say upon coming home from a&e i went to bed and my heart returned to normal rhythm

  • OK I know it is scary. We have all been there but it is important not to let it take over your life. It won't kill you although it might feel like it sometimes.

    I don't know how you came by this forum but AF Association is the main sponsor and the website has a great number of fact sheets which you should read as knowledge is power and will help you to come to terms with this mongrel condition.

    You have made an important step by arranging to see a specialist. We call them EP's--electrophysiologists, as few A and E doctors, quite a few cardiologists and many GPs just don't know enough about AF to do much more than fire fight. They are the electricians to the normal cardiologists plumber.

    AF is a long journey but you have some great travelling companions here so buckle up and enjoy the ride. Life may not be the same but it goes on and in time you will get used to this new life and move on.

    Ask any specific questions and we will try to answer.

    Bob

  • thanks for the reply, im just a bit depressed that ive got this condition at such a young age, aondition or the rmisery stories about either the condition or the drugs making people feel terrible, ive read lots of stories of people having to give up work, i wont lie this has hit me like a hammer blow and im struggling to cope with the news

  • Yes 40 is quiet young but there is no age limit to AF. Over exercise as in endurance running/cycling etc and binge drinking are well known causes of AF in younger people but it can be genetic or just be one of those things. We know what it is but why some people get it and not others is still a mystery. Don't forget also that people who cope well do not normally write on here as they just get on with their lives unless staying to help others so you will always tend to see the negatives rather than positives. It was the mind set I got from AF which helped me to deal with and beat cancer when it came knocking so it isn't all bad news.

    Bob

  • Juggsy, you dont have to give up work, you just need to learn how to deal with the episodes. I no longer go to A@E and I have had 1 ablation and am ready for number 2. As for your age, well my kids are younger then you and 3 out of 4 now have AF, guess I am to blame for that, however they have the foundation of knowledge of what is requried and when because of me. I am from Aus, and worked overseas for 18months in 3rd world countries, and didn't die from my disorder, I did learn to deal with it though. The big thing is, no stimulants, no stress learn yoga or do your bike ride, we have learnt that we do not fall off our perches when we overdo things we just feel a little uncomfortable. Stay positive.

  • I had my first AF experience when I was 33 Juggsy. Yes, it was a bit scary at the time but after 4 days in hospital (remember this was in 1970 and I don't think they knew anything about AF then!) I carried on as normal - played squash, tennis, basketball and generally carried on as normal. The same may apply to you - maybe not. As Bob says, it's scary at times but it isn't fatal in itself. Life adjusts and goes on. Hope all goes well and welcome to the Forum,

  • Thanks for replying, quick question, after my episode on weds I find I'm a little more breathless than usual just walking around, is this normal for few days surely I can't always be this breathless now after one episode

  • I'm no expert but if you are in NSR and not taking Bisoprolol, I don't see why you should be breathless. I've often heard on here that one can be in AF and not know it, so I guess you need proper advice and treatment. It is important that you establish where you are so that you can adapt your life style accordingly.

  • I assume I'm not in ad, my pulse is 72-74 and steady rhythm.....don't appear to be irregular

  • Juggsy, I can have a low heart rate that is not in SR, the breathlessness could be attributed to low blood pressure, ISR or drugs. When I get an episode the breathing is short, however, once you go back to SR so should all the other symptoms, watch it and talk about it when you see the specialist.

  • I am no expert on AF but have suffered from stress/anxiety for years and do wonder if the 'breathlessness' may be caused by your fear. Try slow deep breathing into the abdomen.

    AF is scary to begin with as its your heart that's playing up and we grow up being told all sorts of horrors about how precious our hearts are and then told well its only AF!!

    On the main AF Assoc website you will see that two of the

    main patrons are young first class sportsmen both of whom suffer from AF.

    Take care and know we are thinking of you.

  • there is a lot to be positive about here!

    Your heart has returned to normal sinus rhythm NSR without any drugs other than a beta blocker which is rate control not rhythm, so you probably have paroxysmal AF which just means it comes and goes.

    When you were in AF the rate did not go sky high so other than feeling out of sorts you were able to cope with it. This is a big plus!

    Your GP should be able to get more tests done on your thyroid as that can be the cause of AF

    Sounds like you are otherwise healthy.

    AF often starts in the age range 40 - 50

    AF does not kill you

    Its not easy living with AF but a positive approach is invaluable as the feelings of vulnerability,fear and so on are all in the head.

    It may be ages before you have another episode, what you need to do is try to work out how you will deal with that if it happens. Many take Flecainide as a pill in the pocket approach, something to work out with your consultant.

    A word of warning you will here many different explanations / approaches from the various doctors you will meet - make up your own mind and take control of your own situation and everything will be OK

  • thanks ben, i asked my dr about my thyroid but she just said that it was that borderline she wasnt bothered, she said it was fine 2 years ago when it was checked and that theyll check again in 6 months, id like for it to be done now as you say if its that thats brought on my episode then maybe controling that could stop more episodes of af

  • I was 39 when I first got it, 42/43 when it got bad. There are a few here in their twenties. Welcome to this AF family I'm sure they'll help you alot

  • Hello Jugsy! just to say borderline thyroid problems can and do cause heart issues, thumping banging uneven rate palpatation and a few more! from personal experience thats what happened to me so just to say it may be worth at least keeping a close eye on your thyroid.if you want to you can check out heathunlocked hypo/hyper thyroid issues lots of info and help there. You can get thorough thyroid tests done privately,they are more in depth than those offered by NHS and very often highlight an issue that otherwise wouldnt show up. Hope soon things are more normalised for you.

  • Thanks for the info guys, it's just being discharged from hospital with no info about how to go about everyday life, today my kids want too go on a bike ride but I'm scared it'll set me off again, I keep checking my heart rate, it's steady at about 72 but I've got butterflies that I keep thinking is the af, but heart rate is normal, I'm hoping it's just the anxiety causing it

  • Hi there juggsy. Welcome to our irregular world! I feel you've good reason to be more optimistic than you feel right now. Much of what you've written rings bells with me. My heart first went astray when I was 44 and I'm now 68. The good thing about AF is that, although it may be dreadfully tedious at times and at the start it can be scary and it's not something you grow out of, it does have positive effects. Us AFers tend to live slightly healthily, watching things that other people don't bother with. We don't drink too much, we are more prudent than most and we are watched by the medics far more than people who seem to have nothing wrong with them. We'll probably outlive a lot of them.

    You will get to know how to deal effectively with what silly things your heart can do as time goes by. I know that reclusive feeling. Fight it! Don't let AF take over your life - it doesn't need to. There are many ways of getting on top of it, so don't be too down. It sounds like you are already taking the right steps to slapping it on the wrist.

  • Hello juggsy and welcome to the forum. Diagnosis of AF is a frightening thing, especially as many of us had a personal vision of being fit and healthy, but scary as it is at the beginning, it is controllable.

    The biggest enemy AF'ers face is worry! Your description of fear of going out or doing anything to trigger it is normal - but reassurance comes with knowledge and practice. It may just be that yours is a one-off triggered by borderline thyroid and over-exercise and it's a good idea to see a specialist asap, if only to be reassured and advised.

    All of us have been where you are today. I thought my life had ended but seeing the correct EP and making changes to my lifestyle (especially cutting out stress) has meant that I'm as normal as is possible!! This forum and the AFA website are a great help - but, remember that AF affects us all differently.

    Incidentally my thyroid was slightly overactive and I asked for (and had) monthly monitoring for my first 3 months.

    Very best wishes - please continue to post and ask questions.

  • Hi Jugsy and welcome to our forum. I think I was in my early 40's when I first started with AF and it took me a long time to realise that the periods of extreme tiredness I was experiencing were being caused by my heart. My heart would bang away in my body, but I thought everyone's did that! I never ever thought I would have a problem with my heart - other people had that, not me! I also ate healthily and did loads of exercise.

    It's a shock when you are first diagnosed, but you will get used to the condition and AF is not a killer.

    Regarding your low thyroid function I too am the same, but by searching online I have discovered foods I should eat and others to avoid. I now feel so much better.

    Members on this great site are here to support each other when needed, so don't be afraid to ask any questions - even if they sound daft to you. We have all been where you are now and are pleased to help in any way we can.

    Jean

  • Thank you everybody your words are reassuring, I don't think I'm currently in af, as my heart rate is a regular rhythm, however I only have to go upstairs and it jumps from 72 to 93, I'm also more aware of being a bit out of breath, can anyone tell me is this the ad or is this me being overly seeking my pulse or breathing now I know I've got af

  • Surely everyone's pulse leaps up on going upstairs? Don't like to remind you, but you have hit 40 and that may be a factor here! It's also perhaps a combination of being over aware of your pulse and having a heart that can be a bit confused electrically. We have all been where you are now on our AF journey and we didn't like it much. We have gained confidence as things have gone right for us and learnt when they didn't and knowledge is power.

    Maybe you'll feel bold enough to get on your bike today. How about taking someone with you who will take your kids home if you feel you need to stop cycling. Try putting a toe in the water but don't jump in the deep end. Go not too far off piste and stop for short breaks perhaps. Try to keep stress down and don't assume the worst will happen - but be prepared in case it does. You could go days, weeks, months or years before AF strikes you again. It's so unpredictable and we all have to get to know our own particular brand, the triggers and the way to deal with it.

  • Difficult call, juggsy. I have caught myself holding my breath and worrying that AF was about to start - no wonder!! I think it's pretty normal for the heart rate to rise like that on stairs and I agree with your assessment, because once I knew that my peculiar 'turns' were caused by AF I monitored myself constantly - adding to the stress.

    Try breathing normally, go upstairs, wait and breathe and if you still feel OK - then that's the first step in pushing AF to the back of your mind. xx

  • Hi and as every one else has said, welcome! Your experience sounds a bit like mine, I was 51 and fit but I went to a and e in Exeter with a feeling likely had a bag of frogs in my chest. I had a heart rate of 180. They reverted me to normal sinus rhythm (NSR) with flecanide which is a rhythm control drug, I too had a clear chest x ray, fortunately they were really helpful, explained that I prob had paroxisymal af (PAF) , that is AF that comes and goes and not to worry (easy said!) They referred me to a consultant, while I was waiting for the appointment I had one more episode which sorted itself out in the a and e waiting room! After a bunch of tests The consultant confirmed PAF and prescribed flecanide as a pill I have in my pocket (PIP) which I take if the frogs come back and don't resolve themselves. I am now 56 and I have had about 3 or 4 episodes a year which I have treated myself with the pill in my pocket and have got on with my life as normal. I too cycle, run and race a classic motorcycle. One thing I can't stop is being aware of every heart beat, it kind of comes with the territory! Some people are on anticoagulants because there is an increased risk of stroke due to poor circulation in the heart, but because I am youngish, with no other heart problems I am not on them and am happy that way but It's something to discuss with the EP. There is something called the chads vasc score that helps doctors make the decision you can google that if you like.

    It is true that af usually progresses but it is not certain, nor is the timescale standard. My mum had it for years and never needed anything more than a pill in her pocket, mind you she was a tough lady!

    Some people find triggers for their af and avoiding them can help, but the message is don't let it take over your life, because the fear is often worse than the reality! As for me I am currently laid up, but not from AF its because I was racing in the Badger Goss trophy on Easter Sunday ( local race) and fell off twisting my knee and tearing my MCL in the process! All the best

  • Ps if your heart beat feels irregular then it is prob AF but you need a ecg to be sure, or if you need it you can buy a bit of kit that will take an ecg on your mobile phone. AF can make you breathless, but so can anxiety. Try and relax and get an appointment with a EP asap

  • My AF started when I was at a 3 week residential bootcamp. It was, in my mind, my last chance to try and get healthy and turnaround what had been quite an unhealthy lifestyle.

    4 days in and I finally broke through some barriers and really loved the constant aerobic activity and was really enjoying getting back in touch with my body and felt some real hope that I was finally on my way to a healthy lifestyle.

    10 days in we did a 3 hour strenuous trek and it was exhausting but a real accomplishment. On the way back I noticed my left arm was aching but I figured I had just pulled a muscle or something. I wasn't that hungry at lunch and about an hour later it hit. My heart was suddenly jumping out of my chest and when the ambo arrived about 20 minutes later they record a bpm between 200 and 260 - lying on the bed.

    In the ambulance i started to pass out and they decided to cardiovert (use paddles to shock me back into rhythm) there and then. I woke up from it a few minutes later and my heart was still not back in rhythm but had slowed.

    3 days later I was released and was SO depressed, loaded up with meds, after having what was an almost life changing healthy experience at the bootcamp.

    I went from wanting to ride up mountains on the new bike I had just bought to being wary of climbing a few stairs.

    I was so discouraged and it took me a long time to get past the depression and fear of realising slowly what AF meant for me.

    That was 4 years ago and since then I have probably been hospitalised...12 or more times. As I became more vigilant with my new meds which were designed to slow my bpm and also discourage arrhythmia there have been less frequent attacks and I no longer hit 200+ bpm thank God!

    It takes awhile to get your head around it and all I can say is read, read and then read more. Google your fingers to the bone because there is a lot to learn and a lot of hope out there.

    I personally have found that magnesium supplementation has turned my life around in the last 3 months. Out of the blue I was wondering why I kept being given magnesium drips to stabilize me and went from there

    Usually I would have an AF event on a weekly basis (I refer to it as an event if I do not land in A&E) and an attack at least every 2 months. My AF is paroxsysmal ( can never spell that one) meaning it is not constant it comes out of the blue.

    Since getting on to magnesium I have had 2 x 10 minute flutters and thats it - its a record for me since I started AF.

    I'll stop there as I can be become a bit of magnesium fan but I definitely encourage to google AF Magnesium and read what a difference it can make for many AF sufferers.

    Stay hydrated - thats possibly what was the tipping point for your first attack. And keep an eye out for things that seem to be a trigger.

    Many of us have them. For me I knew that strenuous exercise in the morning used to almost guarantee an AF attack that night. I say used to because I can no exercise and sweat in the mornings for half an hour with no AF outcome that night - again it's the magnesium that has made the difference.

    I wish I could say more to put you at ease but its a shitty disease and it just takes time for you to work through it. And please be proactive about managing your condition. Ask your EP and Dr's questions until you absolutely understand the jargon, your exact condition, what each med does exactly, ask ANYTHING you can think of and do not be put off or sidelined as some Dr's will do. Its your body, your health and your responsibility. Do not back down - be a pain in the butt if you have to but keep asking questions till you are happy with the answers.

    I quite often find the nurses are the ones who will dispense more information and give more advice than many Dr's.

    While I remember the last time I was taken to A&E the paramedic was an AF sufferer. 28, fit as all get out and had been living with it for 3 years. What a profession to pick but by taking charge of his illness he had found a way to live with it successfully.

    And finally? The most important thing I have learned on this forum?

    How to spell RHYTHM without the need of the spell checker!!!:)

    Post anytime you need to - it's a very friendly bunch here who have open caring hearts...that beat in the weirdest ways possible.

    D

  • Hi Dave what magnesium supplement do you take there are a few different ones on the market.Thanks. Sann

  • Sorry for sounding so negative guys, unfortunately I'm one of life's great worriers, I'm a glass half empty kind of guy so at the moment I'm convinced this is the end for me,

    My wife has paid for us to go to new York for my birthday in 5 weeks and I'm close to saying I don't want to go as I'm scared the walking or even the flight will set me off,

  • Juggsy

    welcome to the forum.

    I also fully understand how you are feeling.

    I firstly got an AF attack in my early forties - that was 20 years ago, and I'm still here!

    The advise and comments of the others here are all valid.

    My advise is see a electrophysiologist as soon as possible and try not to worry. The more I worry the worse AF, the worse the AF the more I worry - a vicious circle.

    To give you hope for the future one of the options discussed with the EP may be an ablation.

    I had an ablation in 1999 and was AF free for 15 years. I didn't even think about the posssibility of an attack, and never in that time had one. I lived life to the full and did everything I did beforehand. OK I am no marathon runner or likely to trouble Bradley wiggins in a bike ride!

    ....and yes I did get a return of AF 18 months ago and had another ablation which at 9 msnths appears to have been successful.

    So you can get over this and "back to normal". Many people have their AF very successfully controlled by getting the drugs to suit them.

    Good luck and please keep posting and asking questions. Many here although not medically trained have far more knowldege that the average GP.

    All the best

    Dave

  • Juggsy, go on your holiday, I just finished a trip around the USA UK France and Dubai, make sure you take anticoagulants whilst travelling and stick to countries that have good medical. and make sure you take out insurance, just in case you need it. More people are killed by cars, drink plenty of water on the plane, avoid booze, and be happy the flight from England is small compared to Aus. If it happens have a back up plan, I took digoxin with me and had 1 to 2 when required on top of my verapamil, with the EP's blessing.

  • Jugsy. If you already have taken out insurance then tell your insurance company that you have developed AF now before you go .

  • Thing is nobody has given me any thinners, and I don't have my consultation until 2 weeks before I go, I checked insurance policies and they are astronomical.......I'm on a bit of a downer today as if I'm honest I've been suffering with anxiety for over a year, my wife has been telling me that maybe I need to take something for it, but in my silly macho pride I didn't want to take anti-depressents, so I agree yesterday to see my gp and maybe talk it over.....only to find out, that the ones they use can cause AF......just my luck at the moment......I'm also still off work feeling very down about this diagnosis

  • Anticoagulants can be prescribed by GPs. Get an emergency appointment if necessary. Some GPs are not aware that aspirin is no longer recommended by NICE as a anticoagulant but may be prescribed for other things. In my case my GP did not want to prescribe because she wanted the consultant to decide which one - she expected it to be one of the new (newish) ones (NOACs) rather than warfarin. In my case the appointment with consultant was only 6 days after I saw her. My thoughts are to go for one of the NOACs as you can get going on them quicker and it is less hassle. You can always be changed onto warfarin at a later date if you have to have an ablation. I was started on Apixaban and then had to change at the beginning of the year onto warfarin.

    I know it is easier said than done but try to relax and not worry and get out for some fresh air!!! Relax and think of good things. Try and come to terms with the fact that things will be different but not seriously life changing. It is too early to know exactly what but take consolation that there are so many other people who get things that are so much worse and life threatening. At least it is spring time rather than the depths of winter which add the winter gloom on top of everything!!!! Learn to do a bit of pottering around rather than nothing or trying to rush. That was hard for me at first because I was always rushing around and cramming in as much as I could.

    Insurance companies hate uncertainties because of the risks (or potential risks). As you haven't seen the consultant it will make it worse. Search on the older posts as there are a few about insurance, particularly one in the last week.

    AF in itself can cause depression let alone the fact that you have to get your head round the AF and come to terms with it. As you say some drugs affect AF and have to be avoided. If in doubt check with your pharmacist. I suggest that you select one to use and not just vary between different high street chains. That way they can help in the future as they have all your prescriptions and do a pharmacy assessment (I found that was really excellent). At the moment you do not need to worry about that and you can always message me in the future.

  • You are entitled to feel very down juggsy because, whilst better than lots of things you can have, AF can be tedious and life-changing. However, the shock and horror will wear off as you gain knowledge and make progress - which we all do. It isn't a one-size-fits-all condition and you will be in control when you have more experience regarding what sets it off for you and what sorts of silly things your heart can try to do. You will discover how to be a few steps ahead of it. It goes back into normal rhythm spontaneously, so be pleased about that.

    The subject of anticoagulation is a tricky one as opinion is divided and some doctors think it's not an advantage before one turns 65. Lots of AFers feel it provides security and go for it earlier in life.

  • I can't tell you all how thankful I am that your taking the time to reply, I've got another 3 weeks till my appt with a specialist, hopefully I've picked the right one, I wanted to go to see one with bipartisan in Cardiff but as he's outside my health board after the initial private consultation I wouldn't be able to then see him on nhs

  • Hi Juggsy

    I travel out of my area for an EP, privately sometimes, and then he does ablations etc on the NHS (in his area). Maybe it's different in Wales? I'm in England, just.

    I started AF in my forties but didn't get diagnosed till my early fifties (now 65). It was new and scary; now it's a nuisance and got it mainly under control. Jessie J's had it since she was 8.

    Good luck on your journey (which you've started excellently with a private appointment and this forum) and really try not to worry about it because it's a waste of time and the worry can cause the problem, very much so. One GP gave me some anti-anxiety pills to take very occasionally and having had a bad bout of AF, taken a pill, then the AF reduced to almost nothing, that proved that I (my mind) was making it worse. Since then I don't need to take a pill because I know it will work, if that makes sense???

    Repeating myself, but two main things are (1) your EP and (2) this forum.

    Koll

  • Thank you for the reply, I'm trying to put it out of my mind and get on with things

  • Hello Jugsy!

    I had a 90 minute AF episode in 2012(I was 52) and not had another one since. I do get a few ectopic beats every day here and there but have on and off for years. I did the same as you after my episode and booked myself privately to see an EP.

    I was 6 weeks away from a Maldives holiday at the time. Miles away from any hospitals. I managed to have a few tests before going, but go I did!

    You will probably find there is nothing structurally wrong with your heart.

    2 pieces of advice I would give and they are 1) to recommend buying an Alivecor monitor for knowing what is going on with your rate and rhythm rather than wondering and worrying.

    amazon.co.uk/AliveCor-Heart...

    and.. 2) Take Magnesium supplements. Someone has mentioned magnesium already and that is good advice.

    I began taking a daily hefty dose of it, along with other supplements, soon after my 2012 AF.

    Also keep well hydrated at all times as electrolytes are easily depleted with exercise and dehydration.

    I know it's all consuming right now but once you've seen your consultant you will feel better.

    I can see that you are already but read everything you can find on it.

    The more you read about people still alive and well 30 or 40 years after diagnosis, the calmer you will be.

    Good luck.

    Pat

  • Just checked and the alivecor isnt compatible with my handset

  • What phone have you got? The majority of smart phones support it even if it hasn't been tested with your particular phone. If you can download the alivecor app on your phone then the device should work.

    Pat

  • Omron manufacture the same thing. Very useful gadget - gives you an instant picture of your heart's current rhythm and can be shown to doctors so cuts down on visits for a proper ECG. By the time you get to A and E and they wire you up, your heart can be in normal mode or not as dramatic as it was to start with.

  • Thank you so much for replying pat, the more I read the more better I feel, there is history of heart problems in my dad's family, I'm just hoping this hasn't been passed to me

  • I think the cycling has brought on your AF. There are many cycling enthusiasts on here.

    My mum died from a 'heart attack' aged 54, 36 years ago. I'm 55 now. She smoked, I never have. I'm hanging onto that along with making sure I'm fully investigated where she never was.

    Pat

  • My consultant EP asked me to make a list of what my close relations died of and their ages. My paternal grandfather died of a heart attack at 75 (1976)and his sister of a heart attack at 62 (1969). My maternal aunt had angina, had a pacemaker fitted but died at 48 (1975). My father died at 72 of cancer in 2002 (so no guide there).

    However in my case he was not worried about the heart aspects because he said that if it was over 20 years ago much less important because medical knowledge and equipment has advanced so much in those 20 years . Also re my grandfather in today's longevity terms it should be thought of that he was 85. He also said the key is knowing about the condition (AF) and making lifestyle adjustments but it does not incapacitate directly nor stop most things in life (as some other afflictions do).

    As you will find out more and more AF is a mongrel condition and it affects different people in different ways (and from my own experience in different ways on different days).

  • Thing is I'm not really a cycling enthusiast, I only took it up after giving up rugby and putting weight on, however I find myself pushing myself up ridiculous hills and going on 20-30 mile rides, I was going to do a 110 mile ride in July, looks like that's out of the question now though, the way I'm feeling I could barely ride to end of my street

    I've also ordered some magnesium citrate from myprotein

  • Citrate is one of the best for absorption. Very few people can overdose on magnesium as long as your kidney function is good and you do not have sensitivities to magnesium. Slowly increase your dosage till you get to a point where your stools become loose - thats your body telling you that you have enough.

    Magnesium supplements do not travel well through the digestive process so what you absorb versus what starts in your mouth is much lower.

    Magnesium Oil is a great alternative as well. Absorbed directly through the skin into the blood stream it does not have get through digestive system to start working.

    I have seen people here talk about rubbing int directly above their heart when they experience an AF and it helping greatly to get it under control.

    Don't rule out your trip just yet. You had one episode after a lot of physical exertion and are still kind of recovering. I don't think you are quite ready to dig a hole in the ground yet.

    When we have our first serious medical problem it's hard to accept that your body is not a well oiled faultless machine and that our days of being able to run on air and punish our body relentlessly are over. It can be hard to accept.

    Time will help.

  • I've just read your post again and notice you had achy legs you thought were from your bike ride.

    Aching legs is a typical magnesium deficiency symptom.

    Pat

  • I've had AF since 2009. I now know far more about the condition than I did that morning when I woke up with it for the first time, thought I was having a heart attack, and rushed to A&E without much expectation of returning. AF? What on earth is AF?

    Bob is right about doing all you can to research it - the more you know, the better you will deal with it. It isn't going to kill you and you probably won't have another episode for many months but it is almost certainly with you for the rest of your life. However, catheter ablations - surgical interventions that can arrest AF, sometimes for many years - are becoming far more commonplace than they were just a few years ago. There's good reason to believe that in another 10 years, as technology and medical expertise improves, that there will exist a real hope for a lasting cure for this condition.

    But in the meantime, think what life might have dealt you as you entered your forties. You know as well as I do that there are some real nasties out there, illnesses we have all heard of. Perhaps AF isn't such a bad throw of the dice after all.

    Get the thyroid checked out, though I wouldn't put too much hope in it being the cause.

  • A lot of very fit and active people get AF, I understand your concerns. Don't be depressed, keep on doing what you were doing. If you feel an episode coming on, have a drink of cold water, it does help. But above all, get yourself back to normal ASAP, don't let it drag you down. It's not as bad as you think. Has your GP prescribed any blood thinning medicayion, vos he /she should. Keep smiling get your bikout and go about your business as usual. Cheers Lal

  • No I wasn't prescribed anything by my gp, a&e gave me 2 weeks of bisoprolol to take, with instructions that my gp see me within those 2 weeks and do a repeat egg and decide whether to keep taking them or not, also said for them to retest my thyroid

    saw my gp following morning as when I was dispatched from a&e at 11pm by next morning I was in normal rhythm and 74 nom, gp said no need to take the bisoprolol as my heart rate and rhythm was fine, also said if I wanted a repeat egg then I had to make appt with the nurse, then told me as the thyroid was fine 2 years ago but only borderline now there's no need to test for another 3 months

    so no I'm not on any thinners but my no was 121/85 and cholesterol checked 3 months ago was 3.5 so maybe that's why they didn't feel the need??

  • Sorry for the mistakes, autocorrect on phone

  • Hello juggsy. A few thoughts, more about the practical side. Some of these are obvious in our everyday lives but we forget to do it on ourselves / our conditions.

    1.....You are at a BIG advantage that it happened early and before you are in AF the whole time (called persistent). Improves the success of ablations (if that is the route you end up down and that may not be for a few years).

    2.....As Bob said look at the main AFA website. However print out the booklets or get AFA to send you the printed versions and then highlight key aspects that are relevant TO YOU (I am saying this as a person who for years is 100% into looking at things electronically). Read them and then a week later reread them. Then a week later reread. That way things will become clearer because it is too much to absorb in one go. KNOWLEDGE IS POWER.

    3.....Check that your consultant is an electro physiologist (EP) and that they are on the AFA list. If they are not do further checks before deciding on someone else in case not listed. I believe that in England being out of area is not usually a bar to using them but different health trusts have different policies and that can make life difficult.

    4.....Make your own notes about what you physically feel, affects, concerns, questions, etc (iunder headings). Also references re posts from on here (I save what are key threads to me into a dedicated folder in my favourites) or from other websites (in other folders).

    5.....But an AliveCor for your mobile. A few weeks back it was cheaper from AFA directly than on Amazon. Set to 1 or 2 or 3 mins. If you capture an AF incident on your AliveCor you can print it and show it to your consultant. Note that nearly all ordinary monitors can be quite inaccurate when in AF (one cuff monitor is approved for AFib).

    6.....It was explained to me that frequently it is multiple contributions from different things that contribute or are triggers to AF, not just one. Therefore things like losing some weight even if you are only a bit overweight can help. In my case the biggest factor was being an adrenaline junkie (lots of fast sports up top mid 30s when had bad car crash and then work and home lifestyle - long days and short nights!!!).

    7.....I read somewhere (but don't know where) that people with AF have a dramatically lower incidence of cardiovascular disease and also other things - probably because they get a better lifestyle.

    Hope this helps.

  • interesting ive looked at the afa recommended specialists and the one im booked in to see is an electrophisiologist however he isnt on the list, ill look again and maybe try somebody else, theres one in bristol however i dont know if id be able to then see him on nhs after the initial private consultation

  • Don't discount that's why I said investigate further (because I suspect that not all are on AFA website). A few other things I thought of whilst I was making breakfast.

    1.....Turn on the "Follow Post" feature (if you haven't done so) for all the blogs that you find interesting or want updates on (these are then emailed to you). Even worthwhile doing on older posts.

    2.....Try wandering around the streets near you at a leisurely pace but staying close to home (even if that means doing two or three laps). That way you can do some exercise which will help physically and mentally. I found that between that and wandering around in the house I could end up walking 3km to 5km (1.5 to 3 miles) every day and I am in persistent AF (ie 24/7).

    3.....I am someone who suffers from being clammy and sweaty as a result of the AF. I have reduced the amount that I am out in bright sunlight and that makes it easier to walk and makes you feel more refreshed and "lighter" (not weight).

    4.....Keep your phone charged and not let it drop to 30% or less "just in case".

    5.....Since my ablation three weeks ago I have kept my AliveCor on my iPhone - it doesn't add much weight or mass. Doing that may give you a bit more confidence to go walking!!!

  • Jugsy, I found my EP by looking on the website of a trusted heart hospital, noticing there was a link for private patients and rang the private patients department. I then asked to see an EP privately. My EP has nhs and private clinics from the same hospital and once I'd had my initial appointment and tests (£1300 total for ecg, echo, 24 hr holter and 2 EP appointments-all done in two weeks) he moved me over to the nhs . I have been to see him once more privately as I caught something I was worried about on my Alivecor and got to see him the day after phoning.

    Pat

  • ive just emailed a ep in bristol who specialises in pretty much everything to do with af, he works at the bristol heart rhythm centre, a dr glyn thomas, so hopefully ill be able to see him soon

  • I've just googled Glyn Thomas and he's one of the EPs who chaired and took part in discussions at the AFA patient day in Birmingham last year. ,

    If I'm remembering rightly he has AF himself. A nice man,good choice.

    Pat

  • I've just found this which is worth reading. Funny cartoon too...

    atrialfibrillation.org.uk/f...

    Pat

  • If only it were that easy, let's hope I'm able to see him

  • I saw Glyn Thomas a few weeks ago and thought he was very good.

  • unfortunatly after some phone calls today im only able to see an EP from my area.....

  • Unfortunately it is difficult because we live in South Wales. They will only pay another authority if the condition is immediately life threatening or if there is no facility to treat you within Wales. This is what I found to be the case but as it happens I was extremely happy with the treatment I received at The Heath in Cardiff. X

  • I had a message back from Dr ocallaghan himself today saying he'd be happy to see me for a consultation privately however he wouldn't be able to see me after that on nhs

  • How frustrating for you. Is there an E.P. you can see at Bridgend?

  • No, however there is one in morriston, a Dr James Barry who is an EP, and carries out ablations....however I've not heard anybody who's been treated by him

  • Can you arrange to see him privately to speed things up? You might find you like him. Good luck and let us know what you decide.x

  • Yes I'm seeing him in 2 weeks, I will, I'm hoping he's going to be good

  • Hi know how you feel very scary I was off work too after 4th a and e however two things on flecainide and bisoprolol also did some mindfulness meditation in a nutshell its about being in the moment just look on the net a book I got was mindfulness in you a frantic word. It comes with a cd. Its not rocket science. I did a short course locally where I live and there were a couple of guy s doing it. Managing stress for me is key to the ability to manage af oh and med s. I havent flown for two years just awaiting some tests results then off to Amsterdam. People say all the time on this site its not going to kill you and get on with life which you will but I totally understand how you feel........but take comfort I think 1 in 4 of us usually over 65 get af and my friend's 21 year old daughter had it. When I told people what I had I couldnt believe how many of them either hsd af or knee someone. Take care and ver best wishes Chris

  • I've had AF since my early 40's, I'm 50 now. I wasn't diagnosed until December 2013 when I ended up in A&E with heart rate of 227-242bpm. The paramedics in the ambulance and a policeman couldn't feel my pulse, they said even though it's beating fast it's not necessarily strong. Every time I tried to explain the symptoms to my GP before I was diagnosed he told me I 'was going through the change' so imagine my delight when I could tell him what caused me to end up in A&E was what I've been going through for the last 7-8years when you said I was going through the change! I was prescribed bisoprolol 2.5mg and was taking it daily, this made me feel so tired and depressed that I didn't want to move out of the house, so I took matters into my own hands and now take bisoprolol when my AF starts. I'm not in anyway saying you should do the same, but what I would say is don't always take GP's word as gospel as I told him taking it daily made me feel life wasn't worth living but he told me to stick with it, but I didn't and I'm still here to tell the tale! I was also under my local hospital cardiology dept who ended up discharging me with no further action! I wasn't happy with that so went to see an EP privately and am now under his care in a different NHS health authority. I get AF when I'm stressed, exercise doesn't bring it on for me. You do learn to live with it so don't give up and let it ruin your life!

    This forum is a lifeline and a great source of information, sometimes it can be a bit scary reading about ablation so and things but everyone is extremely helpful! I would also say get an Alivecor as I love mine! Couldn't get it to work to start with but 'fallingtopieces' helped me to get it going with her advice!

  • Jugsy. You ought to be proud of yourself!!! I have only been on here for three months but I think that this is the longest post and certainly in the top 20% for the actual number of replies.

  • I'm very humbled that so many people have sought to reassure and offer help and advice, hopefully as I learn to live with this I can do the same for anyone who comes here feeling like I have

  • My dad got bowel cancer aged 66 and was told he had 1 year to live but managed 6!!!

    A favourite expression of his was "LIFE IS CHANGED NOT ENDED". I think that this saying is actually much more applicable to us AFibbers.

  • Not sure but quick question guys, I've noticed I'm seem out of breath and my left shoulder aches, I won't lie I'm still very anxious about this so I'm wondering if it's the anxiety, surely the one episode I've had wouldn't make me more breathless every day...or would it?

  • Hi, I wasn't going to add to the other excellent posts but I do think I may have something to add so here goes. Before my first bad attack of AF I had frequent ectopics and severe breathlessness, I remember complaining to my GP that I even got breathles going down the stairs never mind up which gave me achy legs. My GP and asthma nurse were determined it was caused by asthma and kept increasing my meds to no effect except that too much Ventolin etc can give you palpitations! Now I have a very effective combined inhaler so I hardly ever use Ventolin. My first trip to a and e with AF was caused by a virus and there is usually an obvious cause for my episodes ie some kind of strain on my body.

    This is just me but what I am saying is that you should not blame AF for all your symptoms, think of them as separate until proved otherwise. Follow the excellent advice about looking after your general health

    and have a lovely time in New York!

  • Hi Jugsy welcome to the forum it's been a great comfort to me knowing there are people out there who know what we are going through.

    You will read a lot about magnesium on here and it does appear to help with AF.

    Best wishes Aly

  • Well guys Im struggling very badly this evening, Sat here doing nothing as every time I move more than 15 feet my HR goes over 100.....scared I'm back in af....to make matters worse I think I've pushed my wife to the brink with my constant anxiety and worrying, so I've decided to move out to see if it helps her and the kids, I must be a nightmare to live with at the moment, think this diagnoses has hit me harder than I thought, I take my hat off to you all for being able to remain so positive.

  • Hi Juggsy

    You will come to terms with it & as it's been said before many times on this site AF won't kill you but I know it can feel scary & you feel you are on your own & no one understands, as outwardly you look 'fit as a fiddle'

    We are all here for support - feeling anxious just adds to it - try & 'go with flow' as they say & don't let it get the best of you!

    Best wishes Aly

  • Juggsy. If your HR is over 100 and you are anxious then call 999 so that they can check you out with an ECG and take you to A&E. Tell them about your anxiety as well because that will be creating adrenaline which in turn will exacerbate the AF if in fact you are in AF. That way they can also give you something to pull down the HDB to what they consider as normal. One key thing is to let them know what your HB was normally. I was told that this is because they don't just consider the actual number but also the % increase (ie if normally your HB was say 50 to 55 and you are at 110 then it has doubled whereas someone whose HB is normally 80 to 90 it is only 20% to 30% increase. Try not to be on your own because you will worry even more as it is too easy for it to become a vicious circle. Good luck.

  • Thanks for replying, I'm going to see my gp today to discuss a few things, also I'm biting the bullet and going to ask for some help with my anxiety, which has plagued me and made me a constant negative worried for the last year, I don't want citalopram as I've read that it can cause AF...I'm wondering if a low dose of beta blockers may help, also can underactive thyroid cause low mood and anxiety, if so I think this needs addressing also

  • well after seeing my gp i feel somewhat better, i asked alot of questions about my diagnosis and he didnt seem too concerned, he told me that i didnt need ani anti coagulant medicine as due to my age, cholesterol, bp and other things it wasnt needed, he also said that i shouldnt expect a definitive answer from my appt with ep as he thinks ill probably get treated with pill in pocket, he mentioned soltarol...

    he was going to prescribe me with anti anxiety meds to help but held off until after my appt as he said most have side effects of irregular heart beat.... so didnt want to cloud my appt

    when asked if this couldve been a one off his reply was....maybe.....until you have another we cant tell you......

  • Juggsy. Glad you are feeling a bit better about it.

    From experience and reading websites and posts I also think (like him) that you won't get a definitive answer and that is because it is a mongrel situation and affects each person differently.

    If you don't have the questions you asked your GP written down then write them down today or tomorrow whilst they are still fresh in your mind. This is because you should ask the same questions of your EP since AF is his specialist area and he is seeing people all the time where as obviously the doctor only sees people with AF infrequently. That also includes the anticoagulation question and whether for now or in the future.

  • Peter mate you've been very helpful with your words, if we ever cross paths I'll owe you a drink lol

  • Glad to have been!!

    It is only 7 months since I was diagnosed so the early stages of getting to grips with AF are still very clear in my mind. Also an ex boss assessed me as "having a mind like a sponge for information" and being good at sorting it. As currently not working I have de-rusted my brain cells a bit!!!

    I will take you up on that drink!!!! Following suggestions on here I have taken up soda and lime (I have never had one in my life until two or three months ago)!!!

  • Well my anxiety is maybe playing a huge part in all this as today my resting heart rate is around 65-68.....

  • A spell of settled days will do you a power of good. AF can come and go. It's infuriatingly fickle, but the longer you have it, the better you know it and the more in control you'll become.

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