What can i do do get help!! I have been suffering Arrhythmias for many years but they don't last too long and come out of nowhere with no rhyme or reason.
I don't drink or smoke or do drugs and feel terrified and helpless as my local doctors surgery , the local emergency dept at local hospital etc all say i just look fine and they are sure nothing is wrong. I feel drained, dizzy, weak as i am typing this due to a bad weekend with it. My current resting heartbeat is 39-40 bpm i bought myself a kardia mobile to use with my phone a year ago but no one will take the irregular recordings seriously or do anything to help. i'm reluctant to go back to the doctors as i'm just not being taken seriously! sorry to moan on but i don't know what to to or where to go from here?? anyone else in a similar situation?
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Hi there, sorry you feel so ill and not getting the support you need. You will get tons of support here as we all understand how you feel and have had varied journeys with arrhythmias so you are in good company. Read all you can on the afa website to educate yourself, knowledge is power. Ask any questions here as and when you want, there is always someone around to answer and support.
Have you been referred to a cardiologist or preferably and electro physiologist, who is a cardiologist specialising in the electrics of the heart. If not please consider asking your GP if you are in the uk for a referral. They will do a raft of tests and get to the bottom of things for you.
We have all been where you are now and still here to tell the tale. Please take charge and get some proper answers, don't be fobbed off its your right to get help. Best wishes.
Hi meadfoot thanks for the kind words means a lot. Sadly my symptoms are as irregular as the arrhythmias sometimes i can go months without it playing up then i'll get a bad patch like this weekend. I walked down to my local A & E dept here in minehead, somerset uk a while back after a bad night and they did a basic ecg which showed low heart rate and high spikes and was sent home as the arrhythmias had subsided and didn't show up. they said next time just dial 111 a few weeks later i ended up dialing 111 and had to wait 13 hrs for a call back. The saga continues !
Hello Lee and welcome to the place you would rather not be. Firstly, most of us here have experienced the issues you describe, although circumstances vary enormously for each of us. The fear, anxiety and concerns for the future are common, but in time, most come to terms with the condition and many lead go on to lead relatively normal lives once a treatment plan has been established.
Meadfoot has covered all the important points, the only thing I would add is that it might be a good idea if possible, to see an EP preferably, or if not, a cardiologist as soon as possible. Sadly, waiting times on the NHS vary enormously but 8 weeks is not unusual, so if possible, consider seeing one privately so that you can quickly get a clear understanding of treatment plans available for your specific situation. Appointments will cost around £200/300, but be careful because ECG’s and Echocardiogram tests can get expensive.
A couple of important things to bear in mind. In the UK, around 1M people are diagnosed with AF, and there are approx 250k folk who have AF and don’t know it. This forum has 12,000 members, but only a relatively small number are active, so there is a general assumption that many manage the condition fairly well. The other important fact is that it is generally understood that no one has ever died from AF.
All a bit long winded I’m afraid, but I hope it’s helpful for you to know that you are amongst friends, all with lots of experience that they are happy to share......hope this helps.....
Not long winded at all i really do appreciate any time given the good advice and kind thoughts i receive. Basic background....I try to look after myself with my health i work, i exercise 5 days a week nothing to crazy and i weigh around 11 stone. I'm 49 years old.
Every now and then i get a bad patch and its scary you think is this the one thats causes a blood clot or worse. Iv'e been in limbo over this for a very long time and its that part of it that hurts. I've been trying on and off for years now to get a treatment plan in place so something is done to help manage this. I'm reluctant to go back to the doctors again as if it's not happening there and then for it to be diagnosed i'm just shown the door with a pat on the shoulder and the words no further treatment necessary. I can't afford to go private unless i win the lotto. Maybe i should give it another try and see if i can get a referral to see an electro physiologist or something. If my symptoms were more regular it would actually help to get it picked up. Anyway thank you for the reply flapjack
Hello Lee welcome. It can be difficult to get a diagnosis with arrhythmias and to confirm which kind you have (if any). I have P-AF (paroxysmal atrial fibrillation ) and it took ages to obtain an ECG during an episode in order to get a diagnosis.
It is important that you keep a log of all your symptoms, time/how you feel/duration/pulse rate /how is your pulse rate regular and fast, irregular and fast etc. This will give you something tangible to present to your GP.
There is a link below to the Arrhythmia Alliance describing the various Arrhythmias..
thanks my kardia mobile helps but is not perfect and certainly not an everyday 24 hr monitor but better than nothing and does provide some peace of mind.
Hi welcome. Keep a record and keep going back. I did. I have to admit it felt like a battle with my gp who was very reluctant to give me a referral to an ep. Don't rule out the private situation either. You just need to get the initial appointment and then be referred to their nhs lists. Be wary though of extra charges and ask on here for recommendations. Above all you are not alone x
Can I please ask what may seem a rather obvious question but it may have relevance? What is your main concern? Being taken seriously and getting a diagnosis? Finding a way to live with whatever it is? Lessening your fear by reducing your risk of stroke? Feeling well? Reassurance?
Arrythmia are scary and they come and go at will. Mine often appear after I have a virus - I’ve come to expect them, not that I welcome them! There are a few which can be potentially high risk but as far as I can gather, most are pretty benign but can make you feel pretty rubbishy.
If you are taken seriously by your doctors the reality is that the treatments are normally drugs - which I found made me feel worse EVERY day, instead of just the days I had the Arrythmias - but they do work for some.
Having said that - I have found the advice of a good EP worth their weight in good and if you go to the AFA site and look for the list of specialists you can pick one near to you - probably will be Exeter or Bristol ands you won’t find EPs working in anything other than a regional specialist Centre - you can then go back to your GP and ask for a referral to that specific person - you have that right under the NHS charter. As already said - the waits are long and if you get one in 8 months in the SW you will have done very well!
I was talking to a guy about 18 months ago who was in a similar position to yourself, his main concern was the fear which paralyzed his joy in life and feeling so bad when the Arrythmia kicked in. He saw an EP, got thoroughly checked out and received some reassurance, started taking a Magnesium supplement and is now really well, no longer depressed and doing really well.
My experience has been that even if you do get a diagnosis, short of risk reduction by anticoagulation IF your risk is high - you can check that yourself by doing the CHADSVASC score - link on the AFA site the treatments also carry risks and side effects so sometimes it is better to find a way to just live with them.
Mindfulness really helps!
You may also find the Arrythmia Alliance site also very helpful -
Look for Dr Sanjay Gupta’s videos - YouTube - there is one about the difference between feeling ill and being ill - often people who are completely asymptomatic are at much, much higher risk than people who feel ill but have very low risk.
Read as much as you can, inform yourself and then go back to your GP and have an informed discussion as to your QOL and ask for a referral.
Thank you for the good advice the fear factor does ramp it up a notch when it kicks in say over a weekend at silly o clock in the morning. I know i have to live with it i was irked that i was not being taken seriously locally. That does grate as my symptoms though brief are severe there is never any doubt when its playing up and it can be painful too.
I do have a fear of blood clots forming not necessarily the arrhythmia itself i have had hundreds of them over the last few years its just catching the little buggers in a way that the medical profession will accept as genuine to take a step forward towards some kind of treatment.
Anticoagulation will reduce the stroke risk substantially but of course one normally requires a diagnosis before medication.
All I can say is that my first AF was when abroad - I didn’t see a doctor - I was in what I now know as AF for over 36 hours - very scary. My second was on a yacht in the middle of the Atlantic - no doctor for a few thousand miles - it lasted about 12 hours. Numerous events after that, weeks months and years apart before being diagnosed and that was 15 years ago, I’ve only been anticoagulated for the last few years and I am still here.
I decided that it wasn’t that I wasn’t taken seriously - although sometimes it felt like it - but that unless the doctor actually has recorded evidence - there is nothing much they will do. Kardia is helpful bt for diagnosis it HAS to be recorded on NHS ECG recorder.
I eventually got a diagnosis by going into the surgery when in AF - being very dramatic at reception saying ‘iit’s my heart, I’m going to pass out’. - which was absolutely true. They moved very quickly, straight through to emergency GP - who took my pulse (very rare) - got a nurse to do an ECG - yeah - I got the referral. But that only after many trips to A&E Which is 30 mins drive away - so by the time I got onto ECG machine of course AF had disappeared
Unfortunately it is a common experience but keep persevering - the goal being get an ECG when it is happening.
Hi Lee, sorry to hear you are feeling so rotten, and also sorry that your GP is not taking you seriously....I'm afraid that is something many of us battle against!
I too had an very low heart rate and this seemed to be the problem for me, my AF usually only came on when I was resting or asleep and my heart rate at its lowest- as if it allowed the rogue pulses to get through more easily. And it is scary, especially when you haven't yet been diagnosed. The very fact that it only happens on occasion does make it hard to capture evidence but if you have a monitor attached to your phone that should be useful in convincing a doctor...if they ever look at it!
Once I was referred to an EP he was very happy for me to email my heart activity readings to him, and after a year or so he booked me in for an ablation based largely on my own testimony, as not much had been picked up on 24hr heart rate monitors/ECG etc ( tho I was 'lucky' in that my first episode was severe and ongoing, daughter called 999 and a blue light ambulance ride was long enough to get the evidence they needed!)
As others have said you really do need to see an Electrophysiologist and if you cannot afford a private consultation you will have to go through the GP. Is there another GP at your practice who may be more sympathetic? Can you print the readings from your monitor and have them with you to thrust under the nose of the GP- surely that cannot be ignored!
I'm afraid they can, I have had two GPs rubbish my Kardia recordings although my cardiologist actually recommends Kardia to his arrhythmia patients and my EP took action partly based on them!
When i went down to casualty 4:30AM one sunday morning kardia in hand with readings, the guy there looked so uninterested as to make me feel 2 inches tall. I tried to show him the readings but because its not there equipment which i can understand up to a point there was a total lack of empathy and enthusiasm.
Thanks for the kind words Angiek so pleased for you getting hooked up with an EP i hope things are moving forward for you.
Saw my Doctor today showed her the little bits i have managed to catch on my kardia and i am in on friday for a quick blood test and going to be referred to the cardiologist. So back on the merry go round. They would not send me to see an EP unless i get referred by the cardiologist. Ironically i'm now praying over the next few months it really plays up to prove i'm genuine .
I have a referral to an EP in Plymouth. In March, having waited 18 weeks I rang and was told that they are 6 months behind with their appointments and they were just sending out appts for April for patients who were due to be seen last October . On that scedule i will have to wait 10 months for an appt 😕. Hopefully you may fair better & get an earlier appt in your area.
Cat04 virtual hug sent. Sounds like we ALL have 2 things in common - arrhythmias of one type or another and fighting the good fight for support / treatment. Hope you get in quicker via a cancellation or something.
If it's really bad go straight to A & E in the hope that they will catch it on their ECG. If it is worse still and all else fails, ring for an ambulance and they should be able to catch it for you. But your Kardia should do the job, so bring it out of retirement!
Remember that your GP may not be able to read an ECG accurately (it is a very skilled job), so try a different doctor at the practice, or ask for a referral to a cardiologist - They will be trained to read them. An EP would be even better - They are trained to deal with the problem!
I can second that idea that the ambulance paramedics might be able to give you a good ECG as part of your evidence needed for a proper referral. I arrived at A&E already knowing that I had AF (but not knowing what that was), and this was passed on to the people there. They did nothing, except monitor me and give me an aspirin. Their referral to the hospital pulmonary/cardiology unit did not connect somehow, and I had to go to my GP and insist he make a referral. That got me nowhere either, as they were only concerned with proving my heart was in good plumbing order (which is is). I then had to persuade my GP that I needed to see an EP, but by then I had a Kardia and the recordings to prove my case. I got a referral then to Blackpool Victoria.
You have to fight the system with this, no one except the proper experts seem to take it seriously.
What are your Kardia readings showing? If you can obtain several 30 second strips of the arrhythmias, you can send them to me and I’ll be happy to read them for you.
There is not one GP in our practice who can read an ECG competently - unfortunately they rely upon cardiology to analyse. I heard recently that there was a 6 week backlog for analysis even.
One very basic question- is your kardia saying the arrhythmias are atrial fibrillation? They may be ectopics ? See Quilafizz’s offer above. Sounds like a good offer as he/she might be able to help. Also, you could send a reading to kardia who will analyse it for £5. Good luck as I know how frustrating it is trying to get a diagnosis.
Hello lee and welcome to the topsy-turvy world of heart arrhythmias.
Weird beats and breathlessness are unpleasant and in turn make us worry, which makes things worse - and so it goes on. It doesn’t help much when we feel something is wrong but it seems to hide from the view of medics.
My own diagnosis took six years to happen - then only by chance. Had I known, I could have asked my GP about being fitted with a Heart Event Monitor so that I could press a button and catch the elusive arrhythmias. Might this be an option for you?
That’s a generous offer from Quilafizz regarding your Kardia tracings.
Sometimes just knowing what is going on can be reassuring.
I’m not a medic, Lash but my view is that ‘palpitations’ is widely used to describe all sorts of heart antics. My GP called both an attack of AF at 120bpm and another SVT at 200bpm palpitations.
I would describe an arrhythmia as any heart rhythm and/or rate which is not in my normal range.
Sorry to sound vague but the word palpitations is used by many medics to describe many things.
My understanding is that the word palpitations is used to describe the sensation many people feel when their heart misbehaves - it is not a diagnosis. It seems also to be a term used by medics in a generic way - which I find very unhelpful.
Can not believe how friendly and supportive everyone has been it truly is appreciated thank you all. have got to go to docs for a sit and wait this afternoon will take a couple of print outs with me to push under their noses. Hopefully it will at least get me a referral.
Know & go with a specific person you want to be referred to - don’t always rely on GP - some are very knowledgeable but others are not! Do your homework & good luck & let us know how you get on.
Yes I am in exactly the same position. I have been caught on ECG twice now but nothing is being done. I have a ofother heart problems including an aortic aneurysm which the Dr's just oh don't worry about that!!! I'm at my wits end I feel so ill when I try and do anything. Sorry your in the same position.
I do feel for you sometimes it gets on top of you and it grates to not be taken seriously when its YOU going through it not them, nice to meet you Scoobisu there is a strange comfort to be had by not being alone in this. Please keep updating on how you go.
Just got back from the docs sit and wait. He briefly looked at the readings one AF reading and a couple of 37bpms with strange blips and irregular beats and asked my symptoms so said about feeling lousy all yesterday etc. Gave me a quick ECG needless to say it was fine. I kept stressing to him the kardia is a recognized device please take the readings seriously.
He shrugged and said i looked fine but did agree to make an appointment to see another doc there in a couple of days time. Also he did finally give me an email address to foward my readings to so the doc i will see wednesday will have had a look at that too.
Feel i'm hitting that brick wall again how we all know that right lol.
Keep on keeping on. Sounds like good progress to me!
Do you know which doc he is sending your Kardia to? Be more specific and find out if he is a an EP specialist - if so - progress. If not what is this doc’s expertise? And why did your GP refer?
Drilling down and questioning your doctor will give you more information and show you that maybe they are taking you seriously but are just a bit flumaxed because they haven’t got the expertise to give you answers.
Good luck,one brick at a time will do it......As others have said,it is your right under the NHS patients charter to request a referral to a specialist of your choice.If you go in with the persons name on Wednesday that may help prompt action.
I can understand your frustration at not being taken seriously,and your fear of possible serious side effects of AF episodes.
Perhaps request a Holter monitor? This is a device given out by cardio depts ,worn for a period of time 24 hours,which picks up events which happen whilst asleep.This then defeats the argument that episodes are anxiety based,which seems to be the position some GPs start from....
''they don't last too long and come out of nowhere with no rhyme or reason''.
So you don't have the problem all the time which will rule out some conditions.
It may vary in different parts of the country but I understand from my doctor that 'home device' readings are not accepted for diagnosis, it has to be an Event Monitor or preferably an ECG carried out by a health professional and that includes an ambulance person.
I was allowed an Event Monitor for 24 hours, pretty pointless for someone one with P-AF.
Having struggled to get a diagnosis I was told to call an ambulance during an episode to have an ECG taken and was reluctant to do this in case the episode stopped (usually with an irregular pulse and in excess of 160bpm) before they reached me (I live miles from anywhere).
I was eventually provided with a letter giving permission to have an ECG at a hospital if I could get myself there during an episode which I eventually did . I was also told that if I couldn't get a diagnosis by ECG a loop recorder could be fitted.
It does make me angry to hear of responses such as 'you look fine'! Just how unhelpful and unreassuring is it possible to be? Sorry you're up against this, and as you can see, a good number of us have experienced similar. I understand how difficult it can be financially, but if you can find any way to go private to see an EP, it will save you more of the same frustrations. If that is something way out of reach, you could possibly consider a phone call with Dr Sanjay Gupta (York Cardiology)? I did that simply to get some understanding of what was going on with me. It was massively reassuring and I was able to clear up some questions I couldn't previously get answered. The cost of the phone consult was less than I had expected too. Details are on his website.
I would echo everyone else though. It turns out I actually DO have a dangerous arrythmia along with the afib/aflutter, but even so, I am far less freaked out by it all, now that I have some knowledge surrounding the whole thing. There's loads of that here too, so you're in the right place
I was also going to ask if your Kardia ever showed 'Possible Atrial Fibrillation' but you have answered that one! 37bpm is pretty low, my cardiologist was unhappy with 50bpm. So I would think that needs investigation anyway. However on a reassuring note, I hope, the short episodes, although making it more difficult to 'catch', are 'better' than fast AF which continues for hours and puts great strain on your heart and body. I have been through the situation of not being able to demonstrate AF despite feeling rubbish generally, very frustrating. I hope you are able to find out what is going on, soon!
This is just to let you know that I have had symptoms like you and after getting nowhere with my cardiologist (who I did have to seen once privately, as he could not fit me in otherwise, my son helped me out as I could not afford it, but I needed to see him!). Even after that great expense for the consultation, yes, I had to pay more for the ECG, that was quite a shock! Anyway, after another year of not seeing him I asked my GP if I could have a referral (I have mentioned this in another post on here) and lo and behold after only 2 weeks, the electro-cardiologist in London gave me an appointment and she said I needed another ablation, should have had two done last year, and - today I have heard the date, which is in May! I am a bit scared as this one is under general anaesthetic. So much quicker than I expected and so relieved as I keep having AFib out of the blue, am very symptomatic (get dizzy and faint, breathless, and can barely speak etc ..) or minor flutterings that make me feel just weak and wobbly!
I just wanted to say to you - tell your GP you NEED to see a cardiologist. And, as people have said, go prepared with a list/spreadsheet of dates, times, duration of AFib and what you were doing beforehand etc. It is such a help for the cardiologist to see a pattern and they take you more seriously.
I hope this helps! This is an amazing site and people are so helpful in supporting those who suffer with this complicated, confusing and scary condition.
I had my first AF attack at work many years ago, we had our own surgery on site and I was blue lighted to hospital, stayed overnight but the cardiologist put it down to too much caffeine.
Over the next five years seen my gp quite a lot who put I my symptoms down to anxiety, panic attacks even though I had some strange ECG readings, in the end i changed surgery and saw another doc who did take an interest, she put me on beta blockers and things settled down, but after a while, probably a couple of years things got worse couldn't walk far without getting breathless, she referred me to a cardiologist at the hospital, he was very good put me on flecinide, which seemed to work again for a year or so, he played around with meds over the next 6 months and just happened that the EP from Bristol was down on the day of my appointment and that morning I was in AF so the ECG reading was proof enough for him to offer me an ablation.
13 months later I will be going in on the 2nd of May for the procedure.
So my advice is to keep going, don't give up, I was thinking at times is it me or is there something wrong, it's taken me over 15 years to finally get it sorted.
I wholeheartedly agree with the other contributors, but would reinforce the need for you to take control of this situation, if not for your physical health and that’s important but for your mental health. I have had PAF for 14 years and agree with others that your body adjusts to the effects of the condition over time and the effects become more tolerable. I have been on meds to treat this for most of that time but just recently my episodes became more frequent so I decided to take some next steps.
I will stop there talking about my situation I just wanted you to understand that I UNDERSTAND and have been dealing with a similar condition.
Which brings me to my point.
Unfortunately it doesn’t appear that you have been properly diagnosed regarding your arrhythmia so it may not be AF at all. So in a few bullet points why not try the following:
•First stop is the GP and ask for a referral to the Cardiac Department. If your local NHS system is anything like here this will take anything between 2/6 months!
•Probably your best course of action is to see someone privately but unless you have private health cover the tests are going to be expensive. Initial consultation though is around the £250 mark to self fund but this gets you in the door. Discuss your situation with the consultant they are very understanding and will have ideas re funding.
•Last thing, Keep a log of your condition as you see it and take any details you may have from your cardiac kit that you purchased.
Hope everyone is doing good today. once again thanks for the support i don't get it elsewhere so it is appreciated. Quick update: Saw my Doctor today showed her the little bits i have managed to catch on my kardia and i am in on friday for a quick blood test and going to be referred to the cardiologist. So back on the merry go round. They would not send me to see an EP unless i get referred by the cardiologist. Ironically i'm now praying over the next few months it really plays up to prove i'm genuine and not wasting peoples time.
I wouldn’t take the medication before I had seen an EP.
My GP just asked me who I wanted to see so I think it may depend very much on your GP. Having said that I did go to Cardiology first - but that was way before we had an EP department locally so it may also depend upon regional resources.
[''Quality statement : Adults with atrial fibrillation whose treatment fails to control their symptoms are referred for specialised management within 4 weeks.'']
'The treatment' for many is usually medication prescribed by a Cardiologist following a referral from a GP unless you are very lucky and there is an abundance of EPs in your area or you are admitted to hospital via A&E. It also says 'you are referred for specialist management ' not that you actually get to see an EP in 4 weeks.
In my area EPs are reserved for performing ablations, if you are lucky you might get to see a Cardiologist. Most arrhythmia patients seem to be sent to a clinic and see an Arrhythmia nurse who liaises with a Cardiologist which presumably enables him to deal with more patients.
Unless a person is acutely ill with chest pains or can afford to consult an EP privately , many will fail to have their expectations met when told to 'see an EP' .
Hi Doodle and thank you for that. I had excellent treatment from my GP, sadly now retired who fought my corner with NHS and Cardiology, who were useless.
NICE is advisory and decisions regarding referrals can be made by GPs to whoever you wish to be referred to - NHS - Charter.
Whether or not that specialist will be available locally will be another matter as they tend to be located in Regional rather than local centres.
That's progress, so hopefully there will be more. It is usual to see a cardiologist first for tests before seeing an EP, although people urge you to demand to see one I think that can backfire...... Best wishes!
Buffafly, I agree. Also if everyone who is suspected of having or is diagnosed with AF demands to see an EP there will be none left to perform procedures like ablations in our cash-strapped NHS.
I never 'saw' my EP at all! We had a brief phone conversation because he was in London and I live in Somerset, and the next time was the day after the ablation when he was called in to decide if I was fit for discharge because I had a pericardial effusion! The End.
Unfortunately I had a very poor experience with my local cardiology - even my GP got completely frustrated with them so yes, on his suggestion, I went privately and the difference in understanding, treatment and outcome was huge.
Thankfully there are many, many more EPs and Arrythmia nurses around now and they are much more accessible.
Can't imagine what you went through there after 14 hrs..... think you had every right to an ambulance. I was told once if it continues for 15mins to call an ambulance so think you had the right to several of em.
I was lucky in that I got a printout from A&E with my AF clearly detected and noted.
My GP then gave me a referral to the cardiology department (in Bristol) and I used that to get a private appointment with an EP. I basically googled the local Spire hospital and picked a couple of EPs that worked there and also in the Bristol NHS hospital. I emailed their secretaries and arranged an appointment with the first one that replied.
I saw the EP within a couple of weeks, and they then took me on as an NHS patient, as well as writing a letter to the GP so I could be prescribed Flecainide as a Pill in the Pocket, to take whenever AF visited. They also put me on the waiting list for an ablation.
So I recommend the private route if you can afford it. It was a one-off £200 expense, and after that there was less urgency so I could wait the 2/3 months for further appointments.
UPDATE: Thank you for all the kind words of support.
Got an appointment in 2 months (mid July) to see a cardiologist hope he / she takes my kardia readings seriously and finally after five years moves me forward and not another step backwards. Keeping my fingers crossed and focusing on a positive outcome. Hope everyone is feeling good on this long bank holiday weekend my thoughts are with you all. best wishes.x.
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welcome. It can be difficult to get a diagnosis with arrhythmias and to confirm which kind you have (if any). I have P-AF (paroxysmal atrial fibrillation ) and it took ages to obtain an ECG during an episode in order to get a diagnosis.
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