I am plagued with ectopic heartbeats and have lapsed int...

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I am plagued with ectopic heartbeats and have lapsed into AF upon many occasions. I am only early 40s and these irregular beats have ruined my life. I have a rare illness antiphospholipid syndrome, which as a blood clotting disorder is clearly partly responsible.

My biggest problem is that the runs of ectopics always have one thing in common when they manifest themselves - there is always severe gastrointestinal activity just prior to the attack and it precipitates the ectopics so much, I get runs of 5 ectopics for every one beat, which makes me feel faint and sick.

I take Bisoprolol in a very low dose 1.25mg, as I develop bradycardia with higher doses.It helps to keep the heart rate under control but does not really supress the ectopic beats.

I am convinced that the ectopics are brought on by sphincter incompetence and gullet spasm, and severe flatulence(if I "bring up" loads of wind, the ectopics ease greatly or vanish for the day) Nobody even my GP can definitely confirm a correlation between the severe GI disturbances and the ectopics.I would welcome a paper on this subject which I could read or to know if others share this same set of symptoms.I feel if I can prove the link, I will be taken more seriously and maybe even be halfway to finding a solution.

I lost my job three years ago and have never worked since, largely due to MS type symptoms I suffer with my illness but the added ectopics and AF attacks make everything far worse.I would quite literally try anything non invasive to alter my life to something reasonable again !! I have kept a diary and have proved that my ectopics are provoked by GI problems but I can't find anything on the web that confirms this .Reassurance would be so helpful !

[i:74d91e7be8]This message was automatically imported from the original Patient Experience[/i:74d91e7be8]

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  • Posted

    I notice that if I don't eat, especially something with protein, within 4-5 hours, I begin with feeling dizzy, I think my heart rate drops and starts the whole tachycardia thing, in response. Now that I am on a blood thinner, Pradaxa not Coumadin, I am told that I can wait it out as I don't have to worry about blood clots. I am scheduled for a pacemaker because I do have bradycardia which results in tachycardia. When I get the pacemaker I think I won't have tachycardia because I won't have that drop in heart rate which starts the process. I will continue with exploring the nutrition connection but the electrophysiology specialist says that is not the contributing factor.

    I am lucky that the doctors have diagnosed the problem so quickly and have made it possible to have a remedy before I have serious heart damage or stroke. I did have the Holter, lots of ECG's Echocardiogram, stress test and have been in ER 3 times over the last couple of months so I agree totally with the diagnosis. I would still like to find more information on the protein, blood sugar, bradycardia connection as my nutrition is very good, although I register on the low side for magnesium and vitamin B12, both of which I have begun to take as supplements. The other possible cause is thyroid but all the blood tests show that I am in the normal range.

    I am also lucky that the arrythmia has only been a condition for me over the last few months and I have had excellent medical care to reduce further complications. It is scary to have your heart begin to race but it is also scary to have the bradycardia where you just feel like you are going to pass out and you can't walk up stairs or do any exercise without the nausea, dizziness and fatigue. I was given an ECG monitor that easily fits in my purse (an Israeli invention), by my cardiologist, which helped me to establish that I was having arrythmia when the palpitations started. This wonderful little device lets you record your heart rate as soon as the arrythmia starts and then you phone the results into the doctor at the monitor station and you are told if you need to go to the ER. The results are also sent to your own cardiologist so there is a very clear track record to help in the diagnosis. If you don't have one of these monitors and you aren't sure how serious the ectopic episode is-ask your cardiologist to arrange with your health plan to get this monitor. It may save your life and it will certainly give you the information you need to give your doctor.

    This condition is not something to just cope with, at least until you have a clear diagnosis and treatment plan which is right for you. I have always had difficulty with climbing, going up stairs and sustained aerobic exercise such as jogging, tennis etc. Now I understand why; my heart rate is too low to provide the oxygen I need for these activities. I also understand why I get the bouts of fatigue and lack of energy. It was easy to blame this on stress, overextending myself and not eating properly, as well as aging but this could have led to a heart attack or stroke. Take charge of your health and insist on getting the proper tests to get a diagnosis and treatment plan.

  • Posted

    I have had this condition for 40 years. It started in the early 1970s, probably as a result of stress whilst studying for law exams. To start with, just the occasional beat was missed. Over the next 20 years, it got worse, with runs of tachycardia lasting up to an hour at about 200 beats a minute. This always started following a 'missed' beat. Eventually, in the mid 1990s, I started passing out, and this happened at work one evening. I found myself in an ambulance and then hospital. There, the consultant conducted something called a 'tilt' test. I failed it, passing out again whilst my heart was being monitored. From the results, I was put on beta blockers, which have been very effective at controlling tachycardia, but do little to stop ectopic heart beats. In 2003, I had the whole problem investigated privately, and discovered during stress testing that ectopic beats stopped if the heart rate rose above 105 per minute. Ablation was discussed at this point, but the cardiologist did not want to try this in my case. I was told that only a small percentage of patients will benefit from the procedure. Now, some 10 years later and at the age of 61, ectopic beats are frequent enough to be caught in a ten second ECG and I sometimes pass out if getting out of bed, or out of a chair, too rapidly.

    In 40 years, I have discovered that GPs here in the UK have difficulty with patients presenting complaints of missed heartbeats. Often, the GP will treat for depression instead. Perhaps this is because the drugs available to treat the condition are potentially more dangerous than the condition itself. I suspect that things like ablation are only available via the private route. I have found that exercise helps in the short term. If I take exercise to raise my heart rate above 105, I can get up to an hour of normal rhythm after I stop. Other means of restoring rhythm during a bad attack are to cough hard or drink ice-cold water from the fridge. However, this only stabilises things for a couple of minutes. I agree with other people contributing to this forum that there may be a link between arrhythmia and digestion. In my case this is complicated slightly by my diabetes and hiatus hernia. I am seriously robbed of energy on a bad day, but this may be due more to the diabetes than the arrhythmia. However, forcing myself to take regular exercise and continuing to hold down a job, help to keep me active in spite of some nasty ectopic heart rhythms. As to how dangerous it is, well, I'm still around at the moment!

  • Posted

    I am so happy to have found this discussion. My story is so similar to yours. I have always been an unsure and lacking confidence person and I had hard time speaking on a forum, or even socialising. Quite often I experienced blushing and profound sweating when my heart would beat fast - although until two years ago it wasn't a problem as such because I did not feel it as something abnormal. Two years ago, I was 30, and had an episode of supra ventricular tachycardia (220bpm), I thought I was going to die...I was started on Verapamil, but after 6 months I had an ablation done. Things seemed ok (with very rare episodes of some abnormal heart rhythm or chest sensations) for almost a year. Last April I had an episode where I ended up at an A&E, with faintness, panic, blood drained from my body, etc. I was told my heart rate was within normal but that I had a panic attack. It actually was triggered by me experiencing palpitations. Obviously after ablation I thought my problems were over, so when palpitations happened out of the blue - I panicked.

    My heart is fine according to 3 cardiologist, although as all of you here, I continue experiencing palpitations and ecto bits few days a week. I am told not to worry. recently I was prescribed an antacid which seems to help. I found that coming to terms/accepting the condition is the best I can do for myself.

  • Posted

    Hi. I posted a couple of months ago as I was waiting to have a heart scan and a 24 hour monitor. Well my heart scan was clear. I had the monitor put on and the nurse gave me a card with about 12 lines on it. She said fill this in when you get an ectopic beat. I had about 20 on the way home which I obviously couldn't note down. I ended up filling in two A4 sheets of paper front and back. And I didn't note all of them which I told her.

    I had to go back to the doctors for my results. He said there is nothing to worry about and the hospital wasn't worried about the beats and everything was ok. I must have had 400-500 and nearly all of them recorded. I am still getting as many. I have resigned myself to them now even though I hate having them because they are scarey.

  • Posted

    Hi Sue,

    I would suggest you ask your Doctor to give you a prescription for Ranexa....Try starting at 350mg twice daily...AND Magnesium Verla. That combination cured my Ectopic Heatbeats.......Ranexa is usually prescribed for Angina...But my cardiologist said they found that it also stopped the Ectopics....and it did. (along with Magnesium VERLA......

  • Posted

    I am so pleased I have found this forum. I have experienced ectopic heartbeats on an off through my 20's,30's and 40's. Now having just turned 50, they have come on with a vengeance. Maybe they are connected to the menopause, I just don't know and GP doesn't know either, tho I am not having any other menopausal symptoms. Had a bad weekend at Easter this weekend when they literally didn't stop, one thump after another like a hiccup with a sharp pain at the bottom of my next. Then all stopped and nothing til I needed up with a septic blister on my foot from a walking holiday and an abscess on tooth at same time. Prescribed penicillin and almost immediately the ectopics were back thick and fast. After one week, all healed, penicillin finished and everything went back to normal. Had a comprehensive blood test as am on blood pressure tablets, everything fine except a low hdl cholestrol, so tinned salmon, omega 3 and walnuts are heavily back in my diet. Some days now I get no ectopics, at the moment they are back thick and fast, I have just had a bad cold and had a flu jab, so any excuse and they are back. My GP is good, but beginning to think I am being a nuisance, as he says they are nothing to worry about!! They are frightening, keep me awake and make me tired, but when I try to rest the ectopics return. So far, they only thing for a temporary cure I have found is a glass of wine!! Not ideal but it gives me instant relief when the ectopics are around. Told me GP, and tho not ideal he didn't object as long as i kept the alcohol to a min of one or two glasses. Having read some of the above, I have now ordered same magnesium as mentioned above from Germany, fingers crossed they will give me some relief!!!
  • Posted

    Hi everyone. I've been reading these posts and can't believe this is common in all ages. I'm a 33year old healthy male, I exercise regularly, drink minimal alcohol and eat a healthy diet. I weigh around 81kgs and have a good physique.

    2 years ago I had PVI ablation to correct paroxysmal AF which seems to have been a success although I do still get ectopic beats daily both PACS AND PVCS as confirmed by ECG and holter monitor. More recently these ectopic beats have been getting more frequent on or after exercise which is making me extremely worried as many publications I have read indicate that this could be quite serious. My echo shows normal structure and good function and exercise tolerance test was very good apart from capture of PVCs and pacs. I've recently been prescribed a very low dose of Bisoprolol and so far they seem to be doing a good job at suppressing the ectopics which tells me that adrenaline plays a major part in triggering mine. Since taking the beta blocker my resting hr has gone from around 57 to 45 bpm.

    I used to take Irbesartan for around 8 years for hypertension (cause unknown) and switched to Ramipril last year as I was worried that my diastolic was too low, creating a wide pulse pressure (pp=systolic - diastolic) which would regularly be around 60-70. About 5 months ago I stopped taking the Ramipril and now by bp is good and pp rarely exceeds 50. I think that years of this wide pulse pressure has contributed to my arrhythmia due to over stretching of the heart tissue, causing damage and areas of ectopic foci, although the consultants don't seem to think so it's strange as my immediate family don't have any heart conditions.

    I've lost count of the amount of times I've bee to a & e with frequent ectopics that make me feel dizzy, breathless and extremely anxious sad

    I'd appreciate anyone's thoughts on this, especially updates from older posts on here, what's gone well, success stories etc.

    Many thanks in advance and luck to you all..

  • Posted

    Hi Nicola32147.

    You'll have to let us know how you get on with the magnesium. I tried this around 3 years ago along with taurine but had no joy but a was only taking the 300mg magnesium from asda.

  • Posted

    I have just joined this forum as completely at my wits end and I actually feel very emotional reading everyone's posts. I am of course not saying that I'm happy that people are suffering the same way but just to know I'm not alone. I have been suffering from ectopic beats for a few years and a few SVT episodes which have quite honestly affected my life. I too have definitely noticed a link between acid indigestion/wind and the regularity

    Of ectopics. They are now starting to wake me at night and I have to sleep sitting up or on my right hand side. I find every episode terrifying and it is causing extreme anxiety and now depression. I honestly can't believe the flippant way GPs and even heart consultants treat the condition as it clearly affects a great number of people. My main problem is I have definitely linked the symptoms not only with gastric problems but with adrenaline so this has now meant that apart from walking the dog, I have given up all sport which I loved. I am now unfit and have put on weight so feel very unhappy with myself. This can't be healthy in itself.

  • Posted

    Hi Everybody,

    I posted here in August and just giving an Update.........My ectopics..on a scale from 1 to 10 ..in terms of frequency and Severity ..used to be 15. Unbearable...NOW after some 6 months on RANEXA (750mg twice daily) and Magnesium VERLA.....(3 Sachets dissolved in water Daily).....they are gone. Oh they TRY to make minor comebacks on rare occasions.....but are very mild...virtually unnoticeable.....but disappear again after a few minutes...The Ranexa and Magnesium Verla certainly worked in my case...after trying EVERYTHING else. Has to be MAGNESIUM VERLA Sachets..the Ordinary Magnesium from the Health Food store does not work..I tried it.....Its worth a try...what have you got to lose....(except the ectopics.)..?

    Liam

    • Posted

      Thank-you!  I will try as I am at my wits end and at level 15 also.
  • Posted

    Hi all

    Its funny that you link so many issues with food as I only started to get symptons that were noticable after I had my gallbladder removed just had a heart scan and it showed I had ectopic beats it actually feels like you miss a beat but in fact its an extra one I had a great ultrasongropher who explained things so nicely even tho I have forgotten the actual medical term lol so im at the begining of all this but I really feel it has something to do with my surgery either the anaesthetic/adrenaline they may have given me iv tried to link it with many things but mine actual gets worst after exercise well I fell like my heart is pumping through my chest

  • Posted

    After 15 years of suffering with bouts of ectopic beats, and being told its normal and nothing to worry about, I have finally been diagnosed with a condition that contributes to the heart problems I have been plagued with.

    In November 2013, I started vomiting my food and experiencing small one of bouts of loose bowel movement, and was taken to hospital with my heart misfiring continually 24 hours previously to the sickness. After a blood test they said I was to be kept overnight because I was dehydrated and my electrolytes were deficient. They put fluids and potassium in, and I was given three transfusions over 24 hours, everything calmed down , even my heart seemed to go very quiet and was sent on my way with a discharge letter for my GP.

    I carried on taking my Bisoperol fumerate (beta blocker) over the next 8 weeks with no incidents with my heart. Just before Christmas my heart started going crazy again, and I became extremely unwell and was again taken to hospital, as there was no incident of vomiting or diarrhoea, this time I was taken to cardiology who took me in and I was seen the next day by a consultant who said I was to stop the Bisoperol and take a beta blocker plus called solatol which would act on the electrical system of the heart and I was discharged. When I got home I took the new medication and with 3 hours the heart started to beat normally again, and I was over the moon with this new medication.

    Last week, I started to experience continued palpitations and soon started retching and wanting to vomit, I tried for three days to calm my heart down down and did not sleep due to the continued frequency.

    My wife then again phoned the doctor who came and visited me, and asked if I was prepared to go to hospital, I said yes, and they took me to A&E where I was given ECG and they took blood tests.

    They then sent me to a general ward (not cardio) which I was perplexed about and was not seen by a doctor until the next day.

    Feeling very unwell and tapping my chest to try and some how alleviate the palpitations, they took more blood and did an ECG, along with blood pressure and blood sugar, I asked if I could take my regular heart medication as well as my normal daily meds, and they said No to heart but yes to regular which they bought me, I was feeling frustrated at not getting the solatol along with some other blood pressure meds, around lunch time, they came with a fluid bag of potassium and hooked me up, they then came with an anti sickness tablet and gave me that, over the next 24 hours they pumped another 3 bags of potassium and potassium drinks with my meds, they next day my heart had started to correct itself but I still had occasional episodes of up to 45 mins each. Later that day, a Junior doctor came and asked how I was feeling and told them I was better but still was experiencing occasional palpitations, she said she already knew this and told me they had already discovered the root cause. She also explained I was not to have the solatol beta blocker until they had finished putting fluids in me. I was then informed I was to be given a 24 infusion of magnesium and oral potassium drinks 3 times a day, as well as calcium supplements with vitamin D3 followed by another 24 hour infusion of calcium while continuing on potassium.

    After 3 days of infusions and oral meds ( no beta blocker and “some” blood pressure meds) I felt like a new man, My heart still gave the occasion light palpitation, but very far and few between, and they almost felt like a butterfly wing touching my chest for a brief second, I could sleep, and was feeling very hungry for the first time in months.

    They then came and gave me my heart meds and the solatol beta blocker, and within a hour and half, I felt nothing except a very regular slow heartbeat.

    I was discharged with a calcium and vitamin D3 supplement, which I take twice a day, I take all my usual meds, and have to have blood tests every week at my GP, who gives me potassium drinks, and magnesium should my body go low again.

    It turns out that Vitamin D , which I have little of, aids they body in absorbing the required electrolytes which mess with my heart beat, I will still get the very occasional extra beat, but it is so light I hardly notice or not even know about. It turns out the general ward I was sent to, was the best thing to happen to me in 15 years of misery, and I am very happy and feel alive again for the first time in years.

    My experience will differ from some of you, but DO NOT start taking potassium, magnesium or calcium if you have similar condition to mine, Go and see your GP first and ask for a blood test for potassium , magnesium and calcium , Vitamin D as taking too much potassium or any supplement can be very dangerous. If your blood tests come back, ask the GP for the exact results, and he or she should be able to advise about supplements and or infusions to get the old ticker back to normal should you need to.

    I hope this helps some if not all of you, its a miserable condition, and I hope my experience helps

    Thanks for reading

    kev

    • Posted

      Thank-you so much as you give me hope for a horrible conditon.
  • Posted

    Blimey, you are much worse than me, but I shall certainly ask my GP for those blood tests if things get worse.

    Interesting about the vitamin D and potassium levels, maybe I'm getting too much. Have to knock the daily banana on the head and vitamin mineral supplement I take, when I remember it. Worth a try!

    Bye

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