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]
4 likes, 103 replies
Guest
Posted
shamrock
Posted
muna80953 shamrock
Posted
I am also suffering with ectopic beats since almost one year now and have a history of stress and anxiety related palpitations for almost 10 years. I did all my medical check ups from holter monitors, echos, trade mills and ecgs and a lot more, they all resulted negative. I travelled to India to see a very good cardio physiologist and he repeated all my tests and told me the same that they are benign and coz no harm but he suggested I take beta blockers , do walking exercise nd yoga which I do. I still get them on daily basis . I get horrible panic attacks, and really don't know how to cope with them. How do you? I thought I might help me to learn from you or any one else in this forum. The mis beats I get some time go on for hours and make me more panic.
Any help???
Muna
Benji86
Posted
They were really bad for a while then I got prescribed beta blockers by my cardiologist which really helped over the last 3 years but for some reason lately I have been having attacks of ectopics despite increasing my dose of medication! This is extremely frustrustrating as I though I had my life under control.
All I get from the cardiologist is do yoga or Thai chi to relax!
I'm open to some type of breathing exercises but not sure exactly what to do?
sue295
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wendy190
Posted
As a new sufferer to this strange condition, I can see that I'm very much not alone. This has literally begun after a dose of 'Deli-belly' and I can now acknowledge the comments so many of you have made about an association with stomach problems and this condition. My doctor has listened to my heart, done an E.C.G and used the common reply that 'I've nothing to worry about'. I do feel tired and fall asleep in front of the TV nearly every night. My husband worries about this. I'm just annoyed as I feel powerless to stop this. I'm an extremely active person otherwise, walking our two dogs twice a day and have a cleaning job. I do take blood pressure pills , I was diagnosed with an irregular heartbeat 16 years ago, but, I've never experienced ectopic hearbeats before now. Quite irritating and almost like a 'silent, inner battle' going on, like hiccups that never go away. I have found using a brown paper bag to take deep breaths helps slow down the frequency. Lying on my right side at night in bed also deters these beats. I'm menopausal also and I realise there is also a link there too. Basically, this is a big nuisance and I can see possibly from repeated comments of lack of medical interest that as sufferers, 'are we to be treated like nuisances also?' Anyway, I hope and wish you all get more help in the future. Lets hope anyone reading this will acknowledge and take our plight a lot more seriously than they do in a lot of cases.
Q. Does anyone ever stop having these once they've started?
annie1119 wendy190
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leah44
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Good luck and start researching so you can find what works for you-don't leave it up to the medical profession as they are not really tuned in to the dietary and alternative therapies.
amanda2014 leah44
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I have been getting these for years but would love to know whether you have found anything out which is possibly going to help all of us other sufferers.
Amanda x
wendy190
Posted
your comments have given me hope. I shall definitely look into dietary and alternative therapies.
Good luck with yours,
Cheers,
Wendy
champers
Posted
I get these too, I haven't noticed any link with my digestion but I will be looking out for it now! been having these hiccups all last night and today! annoying. Anyway I just thought it was worth mentioning, if people are finding them linked to their digestion have you tried keeping a food diary? Kind of a separate story but I think it could be relevant, I got told I had IBS and there was nothing I could do except deal with it, eat yogurt etc. I think doctors have very little nutrition training. I knew it was linked to eating salad but couldn't quite work out why. I took a holland and barratt food sensitivity test which showed a reaction to tomatoes. Cutting them out of my diet I'm totally IBS free now. (I should stress the doctors told me on no accounts to do the test, and that it would be a complete waste of money!) So the reason I tell this story here is that perhaps its linked? if its a gastric issue it must be something we are eating no? I read a mind blowing book called The China Study that links loads of conditions to nutrition. Any of you mentioning fatigue, high blood pressure and cholesterol should definitely give it a go. Ok anyway thanks everyone for putting the gastric link in my head I'll let you know if I work out whats causing mine.
liamo1
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I came across this Discussion and have joined to pass on Information that I hope will be useful.
I have have had several Heart Attacks...always refused By Pass Surgery...for almost 20 years now...and dealt with the condition thru a Variety of treatments both conventional and non conventional.
Over the years...I have had various Stents inserted in my Coronary Arteries .....at last count..around 30. ..But after the last stenting procedure in September 2012..I was left with the most dreadful...terrifying and life destroying ectopic Heart Beats. Very prolonged....almost all day every day..very severe in intensity.
My Cardiologist sent me to an Electrical Cardiologist..who specialised in Heart Rythm Disturbances...who did every test under the sun. after a few weeks....and all tests finished , he began to explain my options...2nd on the heap was Abalation
BUT FIRST before we go that road...lets try this......and he prescribed......RANEXA....starting at 375mg twice daily for a month...then no side effects...increased to 750mg twice daily. ALSO Magnesium Verla...a packet of powder magnesium mixed with water...three times daily.
VOILA..after 6 months of absolute HELL with Ectopic Heartbeats..They are GONE..........reduced in intensity and frequency after a week..and over the following 3/4 weeks disappeared entirely.
Worth a Try..I am in Ireland.....so I dont know how available RANEXA and Magnesium Verla is where you are. Has got to be Magnesium Verla..NOT the ordinary run of the mill Magnesium you get in a Health Food Store.
Good Luck all
Liam
lynne125
Posted
I too feel much worse during both eating and digesting food, also sitting watching tv is not an option, I have to constantly get up and 'do' something to take my mind of whats happening. Night times have become a 'nightmare'. Cant sleep, get woken up if I do doze off, sometimes gulping like a fish out of water. Whether my heart actually stops for a split second and thats what wakes me I am unsure, but it is very frightening!
Have had monitors fitted, which pick up the ectopic beats, and have had couple of cardiograms, just before the appointment with a consultant. Always when getting to my appointment the heart behaves itself, so nothing shows up!
Have bought my own BP monitor to try to see whats happening when I'm at my worse, it seems to be rapid pulse and lower than my usual BP. I'm at my wits end, I'm a petite 5'.2", 7 and a half stone lady of 63, who eats the right food and takes a lot of exercise, and still carries on doing everything around the house and large garden, as well as helping to care for my mother who has dementia, and looking after my 8 year old grandson every other weekend. I'm glad I'm not alone with the way I feel and intend to show some of your letters to my doctor and consultant, if I get to see him in the future
sue295
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wendy190
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And a thanks to Sue, Leah and Lynne and Liam, your posts made interesting and informative reading. Gosh it's crazy that so many of us have such on-going similarities but, are not being taken seriously. I read your comments Sue about the 24 hour monitor with personal interest as I've yet to go through this in the next few months. The 'blaze' response of the nurse is probably a good indication of what I can expect then. And Leah, your interesting comments about the magnesium and potassium depletion are significant to those who take blood pressure pills like myself. And Lynne, like you I'm 'physically' active and couldn't possibly get fitter. Doesn't this all add up to a big 'why?' Why haven't the medical profession acknowledged that as sufferers we have a right to perhaps special clinics to handle our problems? It affects our well-being as much as any other medical disorder? Or, is it that they don't class our problem as a medical disorder? I think that a lot of medical research should pursue this area as surely, we can't all be wrong? Hear our voices, is what I say.
Q. Has everyone managed to cope o.k. with this whilst on board a plane? I'm just about to embark on one?
Cheers everyone,
Wendy.
Keep the conversation going until I get back.