Alpaca555

Hello Emily ... it sounds quite intense! Good to see that tea and a sit down helps you recover though!

Have you spoken to your GP? Or do you have a cardiologist/EP that you’ve been to before? 🌻

Emily007 in reply to Alpaca555

Thank you for your reply Alpaca. I have had ECGs but so far only ectopics and supraventricular beats are coming up. I am not getting very far with the GP and cardiologist keeps discharging me. I just hope that it might get better on it's own. I have to keep drinking a lot to replace lost fluid. I am trying to be persistent with the doctor!

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Buffafly

Hi Emily, you mentioned 'fast irregular rhythm' but then you said NSR is there 'all the time'. Do you mean the fast rhythm is irregular and the slow one is regular? In that case it sounds like AF but you should certainly have it checked out soon as we should not give medical advice. Just because the symptoms are similar to AF does not mean you don't have some other heart problem.

Emily007 in reply to Buffafly

Thank you for your reply. The normal sinus rhythm is there all the time and it is mostly very regular but I have this irregular rhythmic loud beat bouncing around as well. It is coming from my heart because I can feel it if I put my back against a hard chair. It is hard to get on with normal routine because of it. Because I have these very powerful extra beats I am losing a lot more water and I think this is making my legs weak. I have had ECGs but they only show ectopic beats and extra supraventricular beats and systoles (but that was 4 months ago). I think it has progressed. What other methods are there to test for AF apart from ECGs? The structure of my heart is fine.

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Buffafly in reply to Emily007

Good news that your heart is physically fine! Ectopic beats can be very troublesome but the water problem does suggest AF as that makes you pee a lot.

Many of us have had difficulty getting AF diagnosed if the episodes come and go briefly so there is not enough time to get an emergency recording and catch it. Two ways to catch it - get your doctor to fit you with a wearable monitor of some sort for at least three days, or buy a Kardia device which is designed to record and diagnose AF. Unfortunately not all doctors are impressed by this but it is worth having if you can afford it. As the arrythmia is affecting your quality of life you should persist in trying to get a diagnosis.

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Emily007 in reply to Buffafly

Hi Buffafly. Thank you for your speedy reply. This abnormal beating is there ALL THE TIME so I don't know why it is not captured on the ECG. Very difficult to sleep as well. I think I will get the Kardia machine. However, the nurse who put the last ECG monitor on said that if the abnormal beats are coming from the back of the heart they will not show up on an ordinary ECG. Also, I have read that sometimes they don't show up and one of the GPs I saw last year said the same. I can't get on with my life! Thank you for your advice.

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Buffafly in reply to Emily007

Just one more suggestion, I don't know your age but if you are an older person it is worth having a scan of your aorta to check for an aneurysm if you haven't had one already. That would account for the constant palpitations but it may be that you have become very sensitive to your HB which can happen if you have had a lot of ectopics etc.

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Emily007 in reply to Buffafly

Hi. Thank you again for your input. I had an echo a year ago and he said there was a murmur in the region of my aorta. The GP confused things by saying that it was a leaking heart valve so that is what they were looking for but the cardiologist said my heart was structurally sound. Wouldn't the echo have shown if there was an aneurysm? I put my symptoms into Isabel Symptom Checker and it did come up with possible aneurysm(along with a long list of other possibilities!). I will mention it to the GP next week. The way it swings about at times I thought it might be pericardial effusion but the GP said No, that's the first thing they look for.

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seases

Yes I have had similar .go into tachycardia some mornings before Solotal kicks in,scary.Takes about an hour to slow down.May be having cardioversion this week.Hope it works

ILowe

OK, I am a bit confused.

1/ Part of the problem is that our feelings of what our heart is doing are often misleading. I can actually hear my own heart when the background noise is low, because I have a metallic mitral valve. This is very useful for my wife who can also hear it. I do not trust a wrist pulse, so usually take a neck pulse.

2/ I often feel an underlying regular rhythm -- to the point where my body even resonates. I once counted what I thought was regular, 80ish, while undergoing a 12 lead ECG and was most surprised to be told I had AF with a HR of 106 (reduced because of bisoprolol).

3/ I have opted to buy the Heal Force Prince 180D monitor for the ECG since I dislike Smartphones. It travels with me. My wife and I no longer trust reading our own pulses. One nice feature is that the machine beeps loud and clear, and this beeping -- similar to a heart monitor at hospital -- which we have learned to understand. You get an ECG as a bonus.

4/ AF is usually defined ax fast (>120) and irregular. My wife and I have now learned to recognise what we call "pre-AF" and to take action. Any extremely irregular sessions, count as that. They are the warning signs.

5/ Be aware that classical tachycardia is a sudden increase in heart rate, which suddenly ends. You seem to have sudden increase in irregularities, which suddenly end.

6/ It is understandable that high irregularities make it harder to walk. Your limbs are not getting their expected blood supply. But you only mention 15 minutes. That is very short. I get something similar when not fit, for the first two weeks of a walking holiday. What happens when you push through the barrier and the body adjusts? Take care, not everyone feels comfortable pushing through a barrier, and maybe that is not for you.

OK. Back to a theory I have, that Rhythm and Rate are two toddlers, who frequently argue. Why did the irregularities increase? Could it be that the rate is too low?

Emily007 in reply to ILowe

Hello Ilowe. Thank you for your reply. I too got a Heal Force ECG monitor and it recorded the short bursts of fast and irregular beats. I just put it on for the 30 second recording. That was at the end of last year. I showed them to the cardiologist but he said the definition wasn't good enough and he couldn't see the base line. Since then things have got worse. I can hear and see the beating because my body is jumping up and down. I find the symptoms keep changing

Re walking, it is getting harder. I do push through the barrier but the goal is to get to the library, have a sit down, and a cup of tea (2). When I have recovered (takes about 3/4hr) I can attempt the walk back to the car (half an hour). Not long ago I used to be a walker with the ramblers but all that has changed.

I am going to have to be persistent with the doctors.

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ILowe

Wow, this is bad. My cardiologists would not have left you this long. Mine would have

1/ blood tests, for electrolytes, thyroid etc

2/ ultrasound, to check valves etc

3/ started you on flecainide + bisoprolol (smallest dose possible) and if that failed, would probably have tried sotalol. I used to get upset with doctors whose first question about my irregularities was: how do you feel? I used to say, pain is information, I care little about minor inconvenience, so the question is irrelevant and you are only trying to calm me down. I now see that the question is crucial and central -- it was not asked just to calm me down. These irregularities affect people in different ways, therefore the aim is to modulate them ie influence them, until the physical effects are acceptable. Your physical symptoms, regardless of what the heart is actually doing, are obviously very debilitating and long past the grin and bear it stage.

Has any doctor proposed treatment? Sounds like you need a thorough checkup because there could be other reasons for you problem (and I can think of several).

Have you tried Magnesium? There are loads of threads on this subject on this forum. In your shoes I would get some Magnesium Citrate, or Magnesium Chloride (much cheaper) or whatever soluble form picks your fancy, and slowly build up to the maximum you can take. Dr Gupta reckons most people with irregularity problems need to take Magnesium. I was skeptical at first, but when I tried I found I could reduce the dosage of flecainide, and it had an effect within a month.

Emily007 in reply to ILowe

Hello Ilowe. Thank you again for your helpful comments. I asked for my thyroid to be checked and it was fine. I know that Sanjay Gupta recommends Magnesium and I have tried a medium dose but it didn't make any difference. I have looked things up on the internet and I read the papers a lot because there is useful information especially regarding the effects of medication. Other people's stories are very informative too.

I cannot tolerate medication very well but a good doctor at the hospital recommended Argent. Nit. (Argentum Nitricum) and it does calm the abnormal beats down so that I can get some sleep but they come back into full swing.

Regarding walking, I would describe it as trying to walk against the tide. Obviously the abnormal beats are competing with my natural rhythm. My legs are getting weak but I still keep trying because I don't want to get too unfit.

My doctor did mention doing a blood test for vitamin levels and I am going to remind him of that when I see him next week. I asked about flecanide and he said that was a dangerous drug if taken at the wrong time. He said an ablation was more likely to kill me that cure me!!

Yesterday I did record a run of irregular fast beats on my Heal Force Prince 180B and I will take it with me. Put simply, they are trying to make me just manage my symptoms - but I am being persistent! It's not something that I can just put up with.

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ILowe

Wow. Not easy. For Magnesium, it does not usually have an immediate effect -- you have to keep taking it for several months. I was unusual in that I noticed a calming effect after a month.

What does the doctor mean about Flecainide being a dangerous drug if taken at the wrong time? With some people, it can be dangerous. Rarely, but true. Many are spotted from a quality ECG. Any Cardiologist can do that. Some cardiologists recommend initiation with 24 hours monitoring in hospital. Otherwise, it has an excellent safety record and is among the safest of the rhythm calmers

Emily007 in reply to ILowe

Y

Thank you Ilowe. I will speak to the GP again on the subject of Flecanide. Also, I am going to press for a referral to a new cardiologist. I am going to get some liquid magnesium because for me I think it would be better than tablets.

Medication caused this problem in the first place so I am very careful what I take. A prolonged chemical imbalance causes abnormal rhythms/AF. I will ask for a vitamin/mineral and electrolyte test.

Thank you so much for your valuable comments.

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