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Arrhythmia Alliance
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When is an arrhythmia considered a problem?

Hi everyone, I have a funny old heart, most of the time it behaves itself, and I hardly notice it is there.

A few years ago, while 'under the doctor' I was given antibiotics erythromycin long term for my 'acne' which turns out wasn't acne but lactose allergy I first complained of an odd flutter in my chest after a year of these antibiotics, not realising it could be caused by them., ( the tablets were also using lactose as a binder) After being referred to a cardiologist for many months, who never actually witnessed the 'flutters' but just had a chat for ten minutes and charged BUPA and myself the same as my monthly mortgage payment every three months. I asked to go back to NHS care, next visit I asked if the tablets could cause the flutters, The new Cardiologist said not, his trainee said yes the erythromycin will cause heart probs after long term use. I was then discharged and told I was fine. The flutters continued, along with what I can only describe as a BANGING at quite a rate. While cycling at a steady 130bpm sometimes and only sometimes my HR goes up to 190bpm for 20 seconds with the BANGING feeling. The other week I had an episode lying down in bed (doing nothing) that lasted around two minutes where my heart was jumping out of my chest at twice the normal rhythm a real BANG BANG BANG during which I gasped for air a few times.

I visited the doctors and just had an ECG which I am getting the results for along with a few blood tests on Wednesday the 19th.

My Father died from heart problems and all his cousins have pacemakers, so I am concerned.

The Doctor I saw last week said it was normal for the heart to jump about a bit and not to worry, I find it very difficult to believe any Doctors due to many wrongs over the years, So my question still is when is an arrhythmia a problem?

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You don't say if you are still using the same meds, this could give you an indication, if you aren't then lactose could still be the problem. A few minor thumps and breathlessness, was the beginning of my episodes it was maybe 6 months later that it got stronger and lasted longer, say for about 15 mins that I knew there was a problem, now its anything from half an hour to 3 hours. I made my first call for an ambulance when I had feinted it was then discovered that I had a urine infection, never had one before, but apparently this can create havoc with your body. I have been checked over by an EP and now under a cardiologist, and my heart is in excellent condition, its just the peripheral of the heart that's a problem. I have no other family member who has heart conditions. I still think you are the best judge of your own body and if you think there is something wrong along with your family background, I would suggest writing down your short episodes just the date and time, and getting your GP to take you seriously. Others may respond to give you the correct procedure to follow if you think you need to. Good luck

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Thanks for the reply, I do not take any meds now and I stopped the erythromycin once I found out it may have been the cause of the flutters. It wasn't for a few years that I stopped lactose altogether, more as an experiment to put an end to my continued bloating and jointpain (hence the name) That was when I noticed my'acne' healing, and when ever I ate any milk products I would have at least one nasty acne type lesion. You would be surprised how milk has infiltrated into most foodstuffs produced these days.

I have also been meatfree for a year as most meat sold in shops are washed in an antibacterial to give a longer shelf life which is made from milk, I forget the name. Meat was giving me the same symptoms as milk, bloating jointpain, fatigue, to name a few.

I gave up gluten on christmas day just gone, as I was still getting bloated after cereals and I had read that coeliac disease may be the cause of being lactose intolerant. Since then I have not had any bloating though I have had two 'spots' which I can put down to probable lactose.

I may well be lacking in calcium iron and many other things, The blood tests will I hope show these up along with a decrease in my HDL and an increase in my LDL which a year ago were 6.2 and 0.9

Thanks for the reply again, keep in touch.

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Hi ,, can I ask what happened with the urine infection, did it get cleared up and did you get better from the heart palps etc? x

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Hi jill100 this happened some time ago, and I did attend hospital for this episode, not sure what they gave me all up but the urine infection seemed to have cleared up when I got home I think I had some antibiotics from memory, and no it didn't stop the arrhythmia but the later episodes were not so dramatic.

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Hello again, it would seem that your diet is a continuing problem. I kept eliminating things that I thought would help and that worked quite well for me, but I got to a point when I was just experimenting without proper guidance (did this for over one year) like you I stopped Wheat bread and went Gluten Free this does seem to help along with giving up coffee (well I just have one) and also had to give up wine. I still think its a good idea to keep notes of any flutters etc., but sometimes this is not always connected to food, it also relates to stress, or over exerting yourself. For me it was mostly after food. Since then I have pressured my GP to get me to a Gastroenterologist, who gave me heaps of blood and urine tests (never had so many) just before Christmas, I was then diagnosed with IBS and I was only low on Iron, so have eaten more meat since then, instead of just once in a while. Now I am under a dietician, which is good, because she can explain more instead of me researching myself. The fact remains although I eat healthy food and hope to continue with "Low Fermentable Sugars (Fodmap) Diet". I have still been diagnosed with AF/SVT, if you want to understand this condition more you can check it out on the AF Association website and ask someone who has had more experience than myself, they are only too happy to help out, keeping in mind its a UK Site. Cheers again and keep in touch yourself.

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Hi there.

I'm not a doctor so I can't tell you when there is an actual problem, but your symptoms sounds similar to mine, so here's my story.

A few years ago my heart started "fluttering", it comes on very suddenly, as if someone flicks a switch, and my heart BANGS for up to 11 minutes (so far), then it goes back to normal, again as if someone flicked a switch. I was reluctant to go to a doctor, due to fear I suppose - but my other half made me go. I saw an emergency doctor, who told me "next time this happens go straight to A&E". Next time it happened, I went straight to A&E, but like you have experienced, the symptoms had then gone, so there was nothing for them to record. The doctor at A&E told me that this is very normal, that I should have no fear, it was not going to be serious. Still, I was worried, I made my GP order a 24 hour ecg (I wore a little machine strapped to my chest for 24 hours). When I went to get the results, I was certain I was fine, afterall a doctor had told me so. But alas, this was not the case. They are still unsure what the condition is, but it's not good. I was told by my cardiologist that it IS a condition, for which I require treatment - but it's something I CAN live with. However, about 2 months after this diagnosis I had a heart attack (on my birthday.. boo), I'm now awaiting an operation, and I'm on a lot of medicin to control my heart rythm etc.

My best advice is to keep at it, make sure you're taken seriously, make sure they do the tests you need to have done.

It's hard to say when there's a problem, and when there isn't, but it's always better to be safe than sorry.

Stay strong, and put your foot down, doctors CAN make mistakes, don't let them tell you that your'e fine until they know with 100% certainty that you are.

Regards,

Maria

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Jointpain, has your cardiologist never mentioned Tachycardia which is what your symptoms suggest to me. I've had several A&E admissions over the years and it was diagnosed immediately. It is exactly like severe banging of the heart being 'switched on' and after minutes or hours being just as suddenly 'switched off' again.

I spent years putting up with this rather than having the recommended ablation procedure. But then, after asking for a second opinion, I saw a different cardiologist who prescribed 'Flecainide' and I've since been as good as free from attacks for over six years now. This medication has changed my life.

Best wishes, Cat.

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Hi cat3

Glad to hear that just a simple med changed your life. Can I ask you what your diagnosis was? And how long were the episodes of banging/racing heart? I'm undiagnosed, currently awaiting tests arranged by cardiology (holter, echo), but have episodes that can last hours. They are very unpleasant, I feel dizzy and a bit breathless with them. However, a couple of admissions has led to nothing, my heart rate gradually decreases etc.... Nothing to note on ECG in a&e but, paramedics always seem to think my ECG isn't entirely normal, ST Depression and T wave inversion ..Thanks

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Hi Henry. Sorry you've been having these problems...........it's scary and exhausting when it lasts for hours isn't it. I was admitted to hospital when I first had a full blown attack and was told it was Super-ventricular Tachycardia (common term is SVT). I saw a cardiologist who wanted me to undergo 'Ablation' which is a procedure whereby a specific area of the heart is cauterised. A device is inserted intravenously from the thigh and directed by means of a camera to the affected area.

When I chose not to have the procedure I was told there was no alternative or medical treatment. So the attacks continued for many years and, when they became intolerable in frequency and duration, I was referred to a different cardiologist who firstly gave me a monitor to wear over a period of 5 days and, after listening to the recording, gave me the option of Ablation or medication. He suggested I try the medication first as it was obviously the least invasive.

I thought at first it was just a coincidence when I stopped having attacks, but as more time passed I realised it must be the drug working its magic. It's been over 6 years now that I haven't had an attack (apart from when I was in hospital having my gall bladder removed and they'd been forgetting to give me the Flecainide ...........so I think that's a clear indication of its efficiency) But whilst I've taken it there hasn't been a single episode.

I remember the breathlessness and dizziness............it was distressing and worrying, so I really hope your cardiologist agrees to prescribe Flecainide because it really has changed my life for the better right from the outset.

Good luck with this Henry & I'd be really interested to hear how you get on.

Cat x

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Will let you know Cat, might be a while before I get diagnosed. My episodes are still infrequent, but have been scary. I was diagnosed with Ehlers Danlos Syndrome recently so there could be a connection to arrythmias or tachycardia so as a complication of that... It's horrible being chronically unwell at 43, but it happens....

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Hi Jointpain,

I had the odd palpitation here and there before I was diagnosed with a heart condition. I am not saying that you have one but you need to keep an eye on things. The palpitations got strong and then I had to go into hospital with it. I was prescribed heart tablets that help but do not fully control my condition.

May be you ought to keep a diary or sheet on when you have these episodes and if they persist talk to your GP again. It could be a number of things but may be they could do more tests even to help put your mind at rest.

Shelby

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Thank you all for the replies, I can now update my situation a little since I have just got my results from the Doctors.

All my blood tests came back virtually dead centre of Normal, No certificate to say I 'am Normal' though! My cholesterol was 6.3 and the HDL was 1.2 so the ratio was OK It used to be higher and HDL lower with a ratio of around 9 instead of the 5 it is now.

As for the heart BANGING it seems I may have Wolff-Parkinson-White syndrome, which is probably right as I remember being told I had an 'extra' string to my heart when I was under the cardiologist a few years ago.

The Doctor is referring me to the Cardiologist again so I can have a 24hr recording done.

Other than that I am not wanted at the surgery for another year for any checks, I just forwarned her that I will be wanting my Backbones fused together next year as the lower back is painful. LOL

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Thanks for the update. I'm glad you are going to have a 24hr recording done. They can do longer recordings if required. Take it easy.

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I had an internal monitor fitted, then due to confusion and lack of communication by the hospital staff, and despite my reservations, I was also fitted with an external 24 hour monitor that showed nothing. A week after it was removed I had another episode of falls and unconciousness and A+E admission where I was discharged the same day because it was Bank Holiday Saturday. No one was available to read my monitor. I returned on the Tuesday and was immediately admitted as the monitor showed my heart had been stopping. Apparently, because it was an intermittent fault it didn`t show up on the external short term monitor. I`m so lucky to be alive. Don`t just trust the 24 hour monitor.

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Hi Jointpain

Just been reading through this thread with interest, I'm having similar issues, but currently not diagnosed. Just wondering if there is an update or whether you've got any further forward with your diagnosis and treatment for arrythmias....

Also I just wondered, as you describe musculoskeletal issues whether you have hypermobility or Ehlers Danlos Syndrome?

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Well, I am still alive andam going in for a monitor to be fitted tomorrow, it is going on for seven days, and a review a week after. Very slow these doctors, but can't complain (or they send you away, saying there's nothing wrong) My Knees are really hurting these days, what to do?

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Good luck with the monitor! You are right about doctors being slow, but as you say they are not sending you away! You mention joint pain, you are not EDS or hyper-mobile.....?

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Hi Henry43, I looked up EDS and hypermobility, and I don't think I am either. I wasn't actually fitted with a monitor but given an OMRON HCG-801 which I have for a week, I have had cause to use it a few times, often I am too late getting it switched on and up to my chest. By the time I do my Heartbeat is 'normal' again. I have a few results which are alarming to me at any rate, two have periods where my heart is not beating, as the movies say 'flatlining' and other periods when the spikey bit is inverted. which is strange. any ideas?

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Hi, I've not heard of the OMRON, but having just looked it up it appears a little more sophisticated than the HOLTER monitor. How does it record your heart? You mention putting it to your chest? It sounds less effective than the holter just in view of the fact that the holter is continuously monitoring you... I would have thought the flatline you see must be an error, as that indicates no electrical activity, and therefore not compatible with life....

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My results from the OMRON HCG-801 were viewed by the cardiologist at Wrexham hospital and I was seen by him given the once over with an ultrasound scanner. It actually palped while being viewed. Anyway the doc said there was nothing wrong, just the 'electrics' playing up, and to come back if it stopped altogether!

I am not too sure he is really taking it seriously enough, as my resting HR before the two minute 'episode' was around 30-32 BPM and after is rarely lower than 39 BPM It will still rise to 180 plus under severe exercise, (cycling) the knees do not allow me to run or even walk briskly. He did say the knees were suffering from Osteoatheritis.

Well that's my update done, Still not on any meds, so life can't be too bad.

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Hi. I was having scarcely high jumps in heart rate (170 bpm) whilst cycling and after two years back and forth found out that I had an arithmea. They tried to treat this with a ablation but because the SVT was normally exercise induced they could not get the heart to have one, this is necessary for them to identify the cell.

I was put on flacanide which has really helped. I do still get symptoms at times but until very recently I was able to cycle symptom free.

Lying on the left side of my body makes it worse.

Although the symptoms are really scary at times, the specialists have assured me that it is very rarely life threatening.

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