New here, difficulty getting diagnosed... - Arrhythmia Alliance

Arrhythmia Alliance

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New here, difficulty getting diagnosed - advice/similar experiences most welcome!

TurquoiseLagoon profile image

Hello,

I am hoping someone may have had a similar experience to me and may have some advice...

I am 48 and started experiencing palpitations in January of this year. When my partner feels my pulse, he will feel it miss a beat and at the same time I feel a judder/flutter in my chest. I don't experience my heart racing, just this skipping of a beat and the sensation in my chest. This can be most of the day and then a week or so without anything notable. When I lie on my left side in bed I can feel some thumps when it is acting up. Again, the thumps coincide with skipped beats.

I have just had a 24 hour ECG test and am totally baffled. I had many flutters and judders throughout this test. My partner felt my pulse and definitely felt it skipping beats, yet the results say it was a good recording and it detected absolutely nothing. Can some arrhythmias go undetected during this test?

My Dad, Grandmother and Aunt have all had a leaking mitral valve leading to AF and other issues. I understand this to be hereditary which is why I am particularly concerned to find out what is going on. I have had three recent light-headed spells where it really did feel like I was about to faint - these lasted a sudden one second and then I just felt a bit queasy for a while afterwards.

My doctor is writing to the local hospital for advice. I'm not sure how long a response will take at the moment. She offered me beta blockers which I refused until I know what is going on. I would have thought blood thinner would have been a better bet? I am on medication for high blood pressure - my readings are around 102 over 73 at the moment and my pulse approx 63.

I was certain the ECG would pick up all the activity I experience so am confused and frustrated!

Thank you for taking the time to read this, and any thoughts/experiences would be very welcome.

28 Replies

Hi TurquoiseLagoon,You aren't alone. Several months ago I was finally diagnosed with paroxysmal (coming and going) atrial fibrillation after a little over 4 years of frustration.

I well remember the first night on which I woke to find my heart beating in a fast and disorganised way and if I had panicked and sought immediate medical help, I might have had my diagnosis right away. Instead I waited it out to see what happened, and it passed. And this is the experience of many. You shrug it off but then it comes back.

Usually a doctor will ask you to do a range of tests. I had an ECG, an echocardiogram and a 24 hour Holter monitor. The results of all of these were normal in my case. I had some ectopic beats but nothing which suggested an arrhythmia of any kind.

Ectopic beats ( or palpitations), were written off as harmless, but I knew what I was experiencing was more than palpitations.

Your family history may encourage your medics to push a little harder for a diagnosis but I mostly met disbelief and had a feeling I was being written off as a nuisance. I must have seen 7 or 8 GPs over the 4 years, each with a different attitude and opinion. At one point I bought my own event monitor which would (and did) record episodes of arrhythmia and took the results to a GP who scorned them as 'unscientific' and it didn't help my way forward at all.

Long story short. I gave up on it all for several years. I refused to take the beta blocker I'd been prescribed in a tiny dose (I think to keep me quiet and make me believe that something was being done), because after all, if there was no problem, there was no need to take it.

Suddenly around last October, it all escalated. Events were daily and lasted longer. I was recording them on an iwatch ecg by now. I was put back on medication and eventually recalled for another Holter monitor test but this time, to my surprise I was given a 7 day event monitor. That readily picked up my arrhythmias as they started, and they were finally declared to be atrial fibrillation.

It sounds silly to say I was elated to have the diagnosis, but like you I knew something was wrong and I was tired of banging my head against a brick wall to try to make someone take me seriously. My cardiologist admitted that I should have been on an anti-coagulant for some time to prevent a stroke, and I'm just glad I got to the finish line before that happened.

So, my advice is to be persistent, even when you get that feeling that no-one is believing you.

Good luck and don't give up!

Thank you very much for taking time to reply and sharing your journey. How frustrating for you not to have your own tests taken into consideration! I'm pleased you made it to the finish line eventually.

I will definitely be persistent. As you say, my family history may help me secure more tests and a referral to the cardiology department... I think I should push for an anti-coagulant.

I'm still totally bewildered that my 24 Holter ECG showed all was fine when I was experiencing palpitations whilst it was attached.

I think I'd try for an in-depth explanation as to why you are feeling the palpitations but that they either weren't picked up by the Holter (they will have been), or why it's safe to ignore them. The Holter test is done specifically to pick up conditions like Afib and palpitations alone don't amount to this, and are most often dismissed as 'harmless', so ask lots of questions to focus their attention on you and your particular case, and not on generalities. Make sure they know how worried you are because of your family history. What's needed is either an acknowledgment that all isn't well, or that what you are experiencing is of no medical significance, because no-one enjoys experiencing frequent palpitations and not being given proper explanations for them.

Thanks again. In your experience do you then think that if I had AF it would have definitely shown on the results? Looking online, it seems that if you are experiencing arrhythmias whilst they are attached they are pretty accurate.

I'm hoping her letter to the hospital will generate an appointment for me to have a proper discussion with a consultant. If not, I am due to move house soon so will need to change my doctors surgery anyway, so hopefully my new doctors will be a little more helpful.

Yes, I'm sure a specific condition/arrhythmia would have shown up on the Holter test, but that doesn't mean you don't have legitimate concerns about whatever it is that's going on with you. It's quite an important step to be referred to a hospital consultant and it would be a good idea to write down a list of questions about your Holter test and what it showed and what it didn't, and to make the very best use of that appointment.Funny you mentioned the change of surgery. That happened with me too, and I'd all but forgotten. In fact the change of surgery did help me too. My new surgery seems much more engaged with its patients and there are less locums, so that could help your cause too. But first and foremost, don't waste that important hospital consultation. Ask, ask and ask some more! 👍

Thank you again, it's nice to know nothing specific like AF didn't show up, but as you say I need to persevere as my chest and pulse aren't lying!

Hiya It sounds as if you’re experiencing PVCs or premature ventricular contractions which are said to be benign and unlike atrial fibrillation you wouldn’t need anti-coagulants. If they are PVCs then first line is usually betablockers and if they don’t work calcium channel blockers and if they don’t work an ablation. I’ve had PVCs or ectopic beats for a year and so far the betablockers have lowered my blood pressure which is good, slowed my heart rate to 50 or below(!) and have dulled but not stopped the ectopic beats which I feel just as you describe. An appointment with a Cardiologist would be the way forward for you. Don’t know why the ectopic beats didn’t show up on the ECG but a 24hour Holter monitor should show them. An echo of the heart would I think show any possible valve problems and if the heart is under stress at all. Best to check it all out if only for reassurance. I empathise with you. Palpitations are a damn nuisance, they seem to be fine one day and bad the next for no reason. Apparently they sometimes disappear altogether so here’s hoping🤞😊Good luck

Thank you - that's really interesting and shows a lot of similarities. I'm going to have a read up on PVCs now!

I do want to ask for them to check on the valve situation seeing is that could well happen, and it would be nice to receive the reassurance on that as you say.

👍

"I have had three recent light-headed spells where it really did feel like I was about to faint... I am on medication for high blood pressure - my readings are around 102 over 73 at the moment and my pulse approx 63."If you are feeling faint, and you are on medication for low blood pressure, it seems to me that your blood pressure is too low. I suggest you talk to a medic about the dose.

Perhaps the 24 hour ECG did show the ectopics/missed beats - but they did not mention them to you, as they thought that they were "not a cause for concern".

Thanks for your reply, S11m (lovely profile pic!) - I told my doctor about my BP and the three woozy events, but they didn't suggest a change in dosage.

It's tricky at the moment with the Covid situation as my doctors surgery aren't wanting to do face to face appointments and this was a typed chat online which isn't ideal. When I change surgery soon due to my house move I will bring this up again with the new doctors.

I didn't see a copy of the ECG but she said it was fine throughout and said she hadn't not had a "good recording like this one" not miss any problems before.

Hi again just to add my Atrial ectopics showed up on my event monitor where you press record when you feel something. I have not had a Holter so maybe an event monitor is what you need.

I can't help on your specific problem but would like to share my wife's experience. Over about 15 years she experienced periods of a racing heart. She went to the GP on numerous occasions and was generally fobbed off with being told it was a panic attack. On at least 2 occasions she word a 24 hour monitor which showed nothing abnormal. Bought grew worse and again she approached the GP who tried the 24 hour monitor. LUCKILY it went wrong and recorded nothing so GP erred on side of caution and did referral to hospital. 15 mins before hospital appointment she had another ECG which again was clear. She goes into see consultant who checks her pulse and immediately says she's in AF and sends her back for another ECG which captures it finally. Echo then showed enlarged left atrium which supported AF happening over period of time. Wife's now on medication and whilst not cured, it is managed for a good QoL.

Sorry for such a long story but just shows that monitors are fallible and ECFd are specific to a moment in time . Hopefully your GPS letter to the hospital may trigger a more proactive investigation.

Thanks for taking the time to share this, DevonHubby1. Goodness, I'm pleased to hear your wife finally got to a diagnosis after such a long time. I did read something on another site that mentioned some ECG tests aren't as reliable at detecting AF as simply taking someone's pulse.

I definitely (my partner was checking my pulse at different stages) had some abnormal activity whilst wearing my monitor for the 24 hours, and I wonder if as someone mentioned above that the ectopic beats weren't considered worthy of reporting back....who knows, but hopefully I can get to the bottom of it all sooner rather than later.

The ECG will only pick up the Arrhythmia , if it is happening at the time.

Hello, this is why I am really confused about my results being "normal" as we felt my pulse skip beats whilst I had juddering in my chest. I was so taken aback by it I almost started wondering if I had received the wrong results!

Hii also started In Jan with ectopic b eats. In my case they lead to atrial flutter and a fib so I can understand your frustration. I still haven't seen a NHS cardiologist so paid for 2 private and next week a private EP at The London Hospital. Lots of money but in my area we have a 10 month wait to see a cardio at our local hospital and I wasn't prepared to wait that long. Hope you are a persistent person cos you have to fight for everything. Not being negative just realistic. Very best wishes.

Hi ETHEL103, Thanks very much for your reply. I hope your appointments go well for you. I intend to be persistent - it seems like a lot of people have quite a time of it convincing doctors that there is a definite problem. My Dad was initially told (what had been AF) was probably some food he ate! He went undiagnosed for quite some time too and then it came to him having a medical emergency and then finally the diagnosis and treatment. I don't want to become a medical emergency so will be pushing on with this! All the best for next week 👍

Thankyou.

So odd. I don't have the problem you have, in that I have had no problem with people believing me about the ectopics, but that still doesn't mean anything will be done. I have had an Echo and a Holter which did pick up the PVCs - it had no problem with this as I had nearly 4000 of the bloody things. But still, the cardiologist says it's benign and beta blockers aren't likely to help as I have as many while I am asleep as awake (he says they will only help if it is right ventricular outflow that is causing the problem) . But he clearly didn't quite believe me that I can feel Every Single Sodding One of the bastard ectopics. And they'll take your pulse and say "that seems fine" and you say "hang on two secs and you will feel a load of them" . 🙄. "tell me when you feel one" he says, so I do, and then he says "yes, you did have a couple then". Too right. Unbelievable how they seem to think it's no problem and "you'll just get used to them"...

Hi CurlyPretzel - thanks for your reply. Speaking to other people here it does sound that PVCs may well be my problem, but for some reason they seem to be flying under the radar of the ECGs! That's a lot for you to just "get used to". I find it more than a tad un-nerving to feel this juddering in the place of a vital organ!Lying on my left side in bed when they are persistent it can feel like I am being jabbed in the side. I'm not having half as many as you are having though...so is that it for you? No further help on the matter?

Ugh the lying in bed is the worst. I need melatonin to help me sleep at the moment.

I have stress Echo on Friday and we will see what he says a couple of weeks later. He did say I could try anti-arhythmics but he didn't sound particularly enthusiastic so I feel like he wasn't convinced it will help. I wonder if I should request another Holter. I swear they were about every 4-5 beats today.

I hope you get to the bottom of why the ECG didn't pick them up.

Just to add...I think when you are talking to doctors again you could really push the fact you are having problems sleeping - sleep deprivation is no joke and can cause lots of other issues.

Yes I already have actually, hence the melatonin which really does work pretty well thankfully. But it's a dollar a day I would rather not spend!

You have all my sympathy having to put up with so many - I can have days where it is very frequent, but luckily it isn't the majority of the time at the moment. I don't see why you couldn't ask for another Holter - especially if they are coming thick and fast like that. I was reading some of your other posts and I have also cut out caffeine and reduced my alcohol intake (some things are just too precious to totally stop...)

Taking into account everything that has been said on this post I am definitely thinking PVCs seem to be my issue and perhaps they didn't mention them as I didn't suffer enough for them to note them down on my 24 Holter test. I still want this officially confirmed though and wouldn't mind them checking my valve hasn't gone the family way and started leaking...

I hope you get some respite soon.

Thank you! Actually I think it's more likely the Holter wasn't working properly or something? Mine also registered 15 PACs so it is clearly capable of picking up just a few of something.

I use a Kardia 6 L for daily recordings and to catch episodes, highly recommended.

Thanks for that - I'll have a look.

It was only when I paid privately for a 14 day patch monitor that my AF was picked up. That and previous monitors showed loads of ectopics but I’ve always been told they’re nothing to worry about even though they made me feel terrible!

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