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
Pheonix Guest
Posted
I have your heart problem very severely indeed; and I have been battling to get it treated for 12.4 years. I have been feriousciously fighting the medical systems to try and deal with this problem and am so exhausted that I have attempted suicide because of the problems that this causes.
I was piosoned on 11th March 2002 and had extreme pounding of the heart for about 5 hours and it left damage that was perminant.
I failed to get to hospital to get emergency intervention because my parents siad that I was having an anxiety attack (so took the risk, without proving what they were doing).
Ever since then, I have been getting this problem like you say. It is fast (very unstable and irregular) heart beating, with fluttering and ectopic beats; always when getting stomach activity.
I have failed constantly to get evidence of this problem shown on the ECG machines, which comes up with sinus tachycardia and abnormal T wave at the worst.
People say that I have anxiety disorder and that these heart problems are panic attacks; when confronting the health services, they have threatened to have me put into a mental hospital.
I have been to the A&E department more than 10 times or so; each time failing to show this heart problem.
I have had ECGs and a only a few other tests; but rather than examining further to see whether I am getting symptoms that they are not picking up, just to be absolutely certian; they say that there is probably no problem, so there is nothing to investigate.
Thier behaviour is the opposite of like how NASA is searching for life on Mars; and though they cannot find life there, they keep searching. They will not investigate further 'unless' they have proof of symptoms.
I am so confused by knowing that; and have determined that this is a form of medical abuse.
Though it says that I have anxiety problems on my medical records; which is a problem exsesserbated by my autism and the fact that the horrific forms of abuse I have had in the past couldn't be proven: when I call for help, instead of people being sympathetic about this so called anxiety problem, they accuse me of wasting thier time and they talk to me like crap.
All this for which, I want them to go to hell for and burn!
I have developed unimaginable anger and hatred towards people because of this abuse, and I would kill them literally if it was legally allowed.
I hate the NHS, I hate the mental health peoplp interfering with the doctors, I hate the lack of respect I have been giving. I would like to pull these people inside out through thier penis, skin them alive and the bath them in lemon juice and then piss on thier grave after they die.
I haven't done anything to deserve such hatred and abuse from these people.
I wanna know why it's happening and I wanna know why I don't have the right to proper medical investigations like other people.
Judgement day will come for these people, mark my words.
CREED
Pheonix Guest
Posted
Tell me what I need to do about them, and I want to end this constant unimaginable misery. Someone tell me what I need do, anything you can say, anything you know of, just tell me what works. I have 160mg of propranolol once a day, I am still absolutely debillated beyond description during the symptomatic periods; I have to walk very carefully, I stumble and struggle intensively; barely able to do anything, because it causes these symptoms. I have to stand up for hour, leaning on things, straining my self; to reduce the danger.
It is like being tortured.
Someone tell me what I can do.
BijonGhosh Guest
Posted
Pheonix Guest
Posted
Fish that is not hard to digest, vegetables, milk, and chips. You can eat processed spams and meats, and yogurts etc. These have to be things that are easy to digest and yet give you enough nutrients.
Eat an hour after medication, do not eat too soon before medication.
chris80747 Guest
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Pheonix chris80747
Posted
chris80747 Pheonix
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Pheonix chris80747
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muna80953 Guest
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I am suffering from the ectopic heartbeats since one year and have a palpiation history for alomost 11 years. I did all my cardial check ups, from ECGs, echos, holter monitors, cardiac enzymes, thyroid and everything that could be related to the heart problems but they all resulted negative. Recently I travelled to Keral, India to see on of the best Electrophysiologist to role out my ectopic beats cause and he did all the tests for me again. He assured me that nothing is wrong with my heart and these misbeats are benign. He put me on beta blocker, 40mg - Ciplar twice a day and suggested that I should do walking excersises daily which I do, but inspite of that i do get these episodes alomost daily. Sometimes they would last for minutes and sometimes hours. They horrify me to death and lead me to anxiety which makes my condition even worse. Is it fine to experience these episodes couple of times a day? Does anyone experience them alomost the whole day? I try vaselva maneuvor when I get them and it does help sometimes. Please be in touch with me and answer me back as I am going crazy due to this bad condition.
Aidan4224 muna80953
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k3rivers muna80953
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Aidan4224 Guest
Posted
to worry about, all my ectopic beats and pains stop for a good few weeks. They seem to start again when I get put in a stressful situation, and also when I start to worry about my health. An example: if I panic and start to rush a job at work so I am not late home. I have found that keeping the mind occupied really helps. It s also proven and confirmed by my cardiologist you can NOT get an ectopic beat when the heart is beating fast, ie during exercise. I go for 3mile runs and never get 1 when running. Also after a good run I think it help de-stress the body . So overall to help almost stop the ectopic beats try keeping calm plenty of exercise(if told you are healthy) don't worry about your health to much, drink plenty of water and I also found cutting out all caffeine helps too. Stick with it, it'sa controllable condition not an illness... Feel free to reply
ktg1000 Guest
Posted
I'm a 38 y/o male and have resisted the temptation to read about ventricular ectopic beats for about twenty years now; I've had them for as long as I can remember and put them to one side in an effort to deal with it. When I was young, early teens I should think, I had ecg's and an examination even that once, on an ecg machine, that threw up loads of them, I was having a particularly bad day; the cardiologist at the time acknowledged I was having several, but said they were not putting me at risk. However, I CAN CONFIRM, without doubt, there is a direct correlation between trapped wind, anxiety and ectopic beats; I can honestly recommend red wine as a remedy; its calming effects take me, almost instantly, to a much more relaxed state, and subsequently the ectopics calm. I would say on average I have 30 to 40 individual ectopics a day, and on EVERY occasion can burp, which instantly relieves a pressure in the center of the chest that immediately corrects the pace to a regular rhythm; nonetheless though, every ectopic brings a wave of anxiety - I believe it's a circular type thing; you get the ectopic, a wave of anxiety, which develops more tension in yourself, which develops wind, which develops an ectopic. I'm certain I get a mild hyperventilation going on too, which leads to, sometimes, tingling in the tip of your nose and even left hand / hands; you then think you're about to die / heart attack, then you need to break the cycle - red wine; which I appreciate isn't an ideal cure. I'm also a little overweight, and tend to walk around subconsciously sucking my gut in, something I think I might have done for years, probably too much red wine (lol), which in itself loads an upward pressure up the gut, which again causes wind, which will cause an ectopic.
Can anyone identify with all of this? I'd be intrigued to know.
As I'm getting older, I'm thinking I need to do something about this. Firstly, I need to get a bit of weight off, and just relax, which is easier said than done.
diana76250 Guest
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jim57691 Guest
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Around 15 years ago I suffered a PE , the beta blockers had reduced my heart rate to around 50 , I was a smoker and had a job that involved me in long periods of inactivity ; a lethal combination ,especially so when I was subsequently diagnosed with SLE and anti phospholipid syndrome.
I am now on life long Warfarin , which I am really thankful for , because I believe that there is a real danger of blood clots being created from the turbulence in circulation that accompanies ectopic heart beats.
Based on my experience I firmly agree that there is a definite connection between ectopics and GI upsets ; especially flatulence and without doubt once you are diagnosed with "benign" ectopics you can expect little or no help / sympathy from the medical profession.
Unfortunately I still suffer from this miserable condition and I would love to be able to pass on some useful tips for controlling it ; but sadly I can't.