So down and depressed. Been having ectopic beats constantly now for 9 days. Been told by cardiac nurse that they're nothing to worry about but I don't really believe that. Surely something that makes you feel so unwell has to be serious? I've googled Dignitas, that's how bad I feel.
Ectopics: So down and depressed. Been... - Atrial Fibrillati...
Ectopics
Written by
Gwersey
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74 Replies
•
I have PAF. And the ectopics are constant, nighttime included.
I take sotolol, 80mg twice daily. Also have a reveal fitted. Am just so tired of feeling yuk. I'm constantly on the verge of blacking out. I know it sounds as if I'm wallowing in self-pity. But I feel so horrible all of the time.
Have you tried the deep slow breathing exercise. Search top right for details. Helps many of us stop ectopics.
So sad to think you are feeling this low , take care gwersey .
Type Sanjay Gupta and ectopics in search box some very good advice on ectopics hope it helps
I agree. Worrying will only make matters worse. Look at Sanjay Gupta’s website. He is great and speaks a lot of common sense. Wish I were nearer to him. Try and distract yourself with watching amusing films DVDs etc. Read PG Wodehouse. It will help. Try to focus on something outside of yourself. Deep Breathing. Feed the birds. Stroke a cat or a dog. Try to think happy thoughts.
Gwersey - I do sympathise so much.
Ectopics can be damnable and can be caused by many things - the worst for me come if I have eaten something to irritate my gut. Then comes anxiety - I worry about having them, so they get worse, sometimes in the past when I couldn’t breathe because of them.
The first thing to do is to believe your nurse - they are usually harmless. Then have a close, organised look at your diet and how your gut feels. Heart and gut are closely bound by the vagus nerve which when it is irritated by the gut can trigger heart rhythm problems.
As souljacs has advised, have a look at some of Dr Gupta’s advice on ectopics.
Once you feel that you are up to it, try not to concentrate on the horrible things, breathe as normally as you can and try to do a small task which you like doing. Take it easy and rest if you need to, but try to complete your task. Then you will feel more in control and can build on a positive experience which can be repeated.
At night, I found I could sleep if I used an extra pillow and lay on my back - it might be worth experimenting.
The only good thing about ectopics is that they stop - usually when we are not thinking about them, but doing something else.
I hope you get some relief - you are not alone - we who have heart rhythm disturbances feel ectopics more.
Very best wishes
Thanks, that's helpful.
How long have you been on these medications? Any changes? Some actually can create other rhythm problems. I take metoprolol 50 mg twice daily, other than a little tired, do quite well on it. Each has different drugs that may or may not help. Hope you feel better, when I go into afib it is like a curse I feel😞.
It'll get better. I assume your taking magnesium and Hawthorne ?
I take nebivolol which has all but stopped my AF and ectopics.
I sympathise with you competently. I am sick of them . 1,2-345) it doesn’t matter how many we get 1 or 2 is bad enough for me to send me into anxiety and like you I hate that saying just get on with it !!!! Nothing worse then some one telling you that . How do they no they won’t hurt us ? Unless we are on a monitor at the time to be reassuring. If we are going to be straight up here! Ectopic beats send us into other problems. AF , SVT , and other things . So telling someone with AF or SVT or worse not to worry and they won’t hurt you to me is like a broken record now . They have hurt me and sent me into AF and SVE and SVT!! So yes it’s definitely not something that you can just try and forget about. I hope you can get some peace from them and my heart 💓 goes out to you having to put up with them 😔
Best wishes
Sam 💖
Thank you Sam. Yes, unfortunately we're not all "get on with it, stiff upper lip" type. I have to admit that ectopics leave me a weepy wreck!! Have an appointment with my GP this afternoon, maybe talk about changing from sotolol to another medication. Thank you for your kind words xx
Aww I am glad you are seeing your GP and hopefully you can get something done. I am coming up to my 4 month post ablation procedure on the 31st and I am still getting them . I had to abandon my day out yesterday with family because I was in tears as I was on day 2 of reducing my beater blocker. I ended up going back up a dose again, they are horrible things and my EP is very understanding about them and explains it that it’s Rogue signals that are firing off and they should not be any thing to worry over but they are a pain in the back side . One thing I have now learnt is they are hard to ablate in the procedure as unless you are very lucky and they catch them at the time . Out of all are symptoms with AF and other things I hear and read more about ectopic beats and how debilitating they can be to young people and any age to that matter. I won’t go out on my own as I am to frightened to, they have manifested so deeply in my brain over the years my EP and cardiologist say I am thinking I can feel them and nothing has came up in the trace . So I am at the point were apparently I am imagining them 😩😏 how powerful is the brain in all of this ? So like you I sit and cry 😢 and have days when I think sod it all 🤷🏼♀️ you are not alone with them and if you want to scream out load you do it 😘 let us no how you get on please and I hope your doctor can do something for you 💓💖👌🏼xx
Don't feel alone. With many of us AFIB and Ectopic is real, but then it becomes a head and thoughts issue. Where to draw the line between head and heart is very difficult. I have to manage and check my thoughts all the time, although I'm AFIB free for 4years and don't get ectopics that bad or often.
Best wishes with your GP Gwersey - might it help to take an informed relative or friend along as two brains listening and talking can be helpful?
I agree. Also write out questions on a piece of paper and take you time when writing down the doctors answers. Ask follow up questions if you do not understand completely.
After a visit to my GP, I'm now back on Bisoprolol and off Sotolol, with a review in 4 weeks. Fingers crossed this works. Thank you all for the advice and support, I'm truly grateful to have been able to offload/whinge. So many people coping with this horrible condition with bravery and compassion!! All the very best to everyone in 2018.
Sorry goldie11 but they are horrible and do make people feel awful. It depends on how sensitive you are to them ! And ectopic beats can send you into AF or SVT!! So that’s why we worry sick and feel bad . If you have high anxiety and depression then it’s very hard to snap out of something that you no is connected with AF .
I understand completely your despair I also have these 24/7 and was also at your stage I had 2 ablations this year but need a 3rd it has helped a little but every day is a struggle and no one understands as its not visible dint take the meds anymore as they do nothing my EP says I may be a canditate for this new procedure mentioned here recently developed in Washinton University in St Louis where they use radiation.my EP says its 2 years away but it gives me hope that one day I can live a normal life, look up on one of the other threads or type in "game changer for patients with irregular heart rhythm - The New York Times, Im having 30000 ectopics a day and can barely walk but I still live in hope, I wish you well and please post when you can we all sympathise.
Kind regards
Ingrid
Thank you Ingrid. I hope you get some good news soon. X
I am waiting to see if this works ingrid , I will wait as long as possible for hope that something can be found for them . Your post has put a smile on my face after a bad day with them yesterday 😊👌🏼😊💖
It would be amazing to get rid of them for good x
If I do you will be the first to know! and everyone else on this site! Good luck.
Happy heartbeating holidays!
Ingrid
• in reply toSam72-
Hi Sam
I'm interested, what happens when you have the ectopics and then exercise, say run to catch a bus or train ? Does that make them worse or better? Or are they bad enough to stop you exercising in the first place?
Sam72-• in reply to
Hi there , at the moment I cannot walk at a pace and they start within minutes, I have a stress test booked soon to see what is going on and exercise for me is out of the question 😏I don’t no if it’s the beater blockers or still recovering from my procedure as I was froze and burnt on the same day . To be honest it’s caused me great anxiety and it feels worse than before my procedure.
• in reply toSam72-
Thanks Sam. I have a similar problem. In my case, I can have a regular pulse at rest, then up the stairs and the old ticker starts banging away haphazardly. Pretty sure this is a late result of scarring from first ablation. Will need a second one to fix it unless EP comes up with a different med.
I read your account of your hormonal problems over the past 30 years - you are a brave woman to have overcome so much.
Sam72-• in reply to
I had my procedure just coming up to 4 months now but I was getting a fast pulse through the night on and off and that has stopped now thank god it’s just these ectopic beats now grrrrr so annoying, as for my hormones and heart that’s why I am probably very sympathetic towards others that suffer as I am years down the line and they still have me in bits 😏 I honestly don’t no how my husband has coped with it all , he never panics eaven when I have passed out , must be the military as he’s had lots of experience with traumatic stress. He also thrives on stress 🤦🏼♀️🙆🏼♀️I hate it with a passion. But thank you for kind words 😊❤️
Sam72-• in reply to
So basically I have to snail
Trail like a 90
Year old then stop then slowly and stop ! It’s so embarrassing as I am 45 and just feel like I am slowing the family down 😔
Hello Gwersey
Do you know what your Reveal has picked up? Does it transmit data to your EP? Are you sure these are ectopic beats, and if so, are they atrial or ventricular? Are there any long pauses?
If I may offer a word of advice. When I used to come across as anxious, my doctors were more inclined to dismiss me as neurotic, and then not infrequently, be proved wrong later.
If you feel well informed about your condition and feel there is clearly something physically wrong, do not accept advice which essentially amounts to stop worrying so much, however well intentioned it is.
Do not allow a medic to patronise you. Many are ill informed about the interface between mind and body. In my experience cardiologists are amongst the worst.
Unfortunately when you bring Dignitas in to the conversation in your situation, you risk not being taken seriously.
I have no intention to offend the kind and generous folk of this board. Those without experience of anxiety and depression, may not understand the prism through which we who have, view our physical health.
Yes we can lose perspective. But remember, when you imply our symptoms are purely psychosomatic, while you may be right, remember that you may be wrong. I am unaware that the incidence of physical disease is lower in those of us who like me have an affective disorder. Arguably it is higher.
So now I am waffling and I can definitely feel a rant brewing.....
As ever Sam72's comments as above are far more pithy and succinct and therefore more memorable.
For those who have not nodded off at this point, I would say
If you have been, thanks for listening.....
Sam72-• in reply to
Your just like me 😂 once you get going it’s hard to stop lol . I agree with you and your feedback about this topic 👍🏼👌🏼💖 horrible things they are and my brain is wired into them now 😏 got to be a cure one day I hope 🤞🏼🤞🏼
After my AFIB was treated and I heard Ectopics were "supposedly" not something serious I consentrated more on my thoughts and fear. To arrest and manage them, because it was and is one of the things that I can try to control. Not easy but with practice possible.
Sorry to be blunt, but I told myself "if you worry or not you'll die some day"
Between worry and death there is only one that I can "sort of" manage.
But I understand that sometimes AFIB and Ectopics has a physical affect on us.
Gwersey• in reply to
Yes the Reveal has picked up ectopics. The data from it is transmitted to the hospital where it was fitted, the Royal Stoke in Staffordshire, but the data is only looked at if I've had a consultation or visit.
I agree with you, GPs and cardiologists can be patronising and indeed impatient and dismissive. Unfortunately I seem to come across as anxious and neurotic. But the symtoms are nonetheless real and upsetting for me.
• in reply toGwersey
Could your arrhythmia nurse specialist analyse the last nine days where your ectopics have been so bad? Otherwise I am still not clear how you know they are just trivial or benign or even ectopics, rather than a dysrrhythmia.
Do you have a Kardia? Are they compatible with a Reveal?
Many feel ecg home monitoring can exacerbate the anxiety/AF vicious cycle. I think that knowledge is self empowering and can therefore reduce anxiety.
Ectopics or premature contractions are indeed very common even in healthy hearts. They are considered harmless and should not cause symptoms, unless you have become obsessed about them and unconsciously you are making yourself feel sick. you got to believe what the nurse told you and try to find ways to distract your mind from focusing too much on your heart.
Sam72-• in reply to
Yep they are and everyone gets them!! But it’s down to the person and how they react to them ? I have tried everything and I still get anxious about them as they can also catch you off guard at any time . As I was told in CBT therapy to take the anxiety head on and not run from a situation while having an episode!!! However if you have an underlying heart problem it’s easy said than done . And I do not agree with you on they should not cause symptoms unless your obsessed with them ??? REALLY!!! 🤔
Finvola• in reply to
Tachp - not all symptoms caused by ectopics are in the mind but I agree that the power of the mind is an important factor in dealing with any arrhythmia. Sometimes my furious ectopics cause SVT at around 130bpm, sometimes one ectopic can trigger AFlutter which is slightly slower. My EP told me that multiple atrial premature contractions are the heart trying to go into AF - and, in my case, failing because of my Flecainide dose.
• in reply toFinvola
Supra Ventricular tachycardia is an arrhythmIa, not ectopics. This type of arrhythmia is not very dangerous and is fairly common in young people, even children. In adults it’s usually triggered by strong emotional states. In most people, ectopics do not trigger arrhythmias, your obsessional worry about every heart beat is making you more symptomatic than you should. I would suggest that you get some psychological counselling. I’m sure that your cardiologist will agree with me.
Finvola• in reply to
Thank you for the consult - will pass it on to my EP.
porthole1• in reply to
As you say SVT is an arrhythmia is not dangerous,then why when I get an episode do I have to call 999 within half an hour ?
I am 74 years old have finally been given a diagnosis of SVT after an episode in Tenerife where the Hospital gave me my notes to take home and I could show the consultant my ECG, and he says dial 999 after 20-30 minutes !!
My heart and lungs are fine, with an episode my rate goes to 165 .im taking bisopralol 7.5 with a back up of 2.5
I would add I’m flying to America in April and my insurance has gone up higher than my heart rate !!
• in reply toporthole1
When I say SVT is not dangerous I mean that it won’t cause sudden death. Like the tachycardia that affects the ventricles and which can degenerate in ventricular fibrillation and cardiac arrest. Certaily, all arrhythmias have to be treated, because even when they won’t stop the heart from beating, in the long run can fatigue the cardiac muscle and develop structural changes. SVT and AF have both rapid heart beats and the difference is that in SVT the beats are regular and in AF, irregular.
porthole1• in reply to
Thank you,there’s so much that I don’t understand,. I Cary on each day hoping not to go into SVT....
• in reply toporthole1
Dear Porthole1
I will try to put it in simple terms. Normally the electric system of the heart functions in a well coordinated way, to the point that we aren’t even aware of it. However, there are situations in which the heart loses its coordination and we notice it immediately. This situations are called arrhythmias. There are two major groups, the ones that originate in the upper part of the heart, called “Supra-ventricular” and the ones that start in the lower part called “Ventricular”.Only the ventricular arrhythmias are considered very dangerous, because it could stop the heart and you die. The others can make you feel very uncomfortable, but they won’t kill you. Nevertheless, they need to be treated because if you have them for too long, it will eventually fatigue your heart and damage it. Your arrythmia SVT is not lethal. Your doctor will explain in detail the situations that you have to avoid, in order to reduce the possibilities of provoking another episode. I will only mention three of the most common: mental o physical STRESS, ALCOHOL, CAFFEINE. Worrying too much about your arrhythmia is a form of stress than should be avoided. Worrying serves no purpose anyway.
.
• in reply to
Thank you tachp.
Concise and well put as ever.
• in reply to
Thank you Badger for the complement. Incidentally, people with arrhythmias who don’t watch their pulse 24 hours a day, live longer, are happier and have better quality of life, than those who do.
Sam72-• in reply to
Are you a dr ??? Because my SVT was a pathway I was born with that needed burning to stop the round and round electrical pathway from getting stuck ? That could happen to me especially on exercise as my heart rate went up
Nothing to do with emotions!! Mine would also start with a run of ectopic beats then bang into a fast heart rate. It happened in my 20s but yes stress can bring on a fast heart rate to called anxiety!!
No Sam I’m not a doctor,I’ve had quite a few episodes of SVT, been taken to various hospitals to have an injection of Adenosine whilst connected to an ecg,this I imagine kick starts the heart to a proper rhythm.
It is so frustrating as I never know when it will happen,grrr
• in reply toSam72-
To begin with, the body and mind interaction is real, they both are intimately connected. Stress, fear, worry, sadness, apprehension, anxiey, anger, fatigue, etc, produce the release of chemicals such as adrenaline, cortisol and others that are known and many that are still waiting to be identified. When I say emotional factors, I don’t mean that “everything is in the head”. Blood pressure is an example, emotions can make it go up and down like a roller coaster. Emotions can trigger bouts of migraine, psoriasis or asthma. my point is to make sure that we understand the difference of isolated ectopics from real arrhythmias. SVT is indeed an arrhythmia, and as such, needs to be treated, it does not cause cardiac arrest but if left untreated for many years, it could damage the structure of the heart. Some people are born with an extra electric pathway that facilitates the onset of SVT and also AF. It’s known as the WPW syndrome. It comes in different degrees of symptomatology. In itself, SVT is not life threatening but it needs to be treated like any other arrhythmia, with medicines, cardioversion, ablation, etc.
Sam72-• in reply to
Mine was not WPW !! And SVT can indeed in some people with structural problems cause a cardiac arrest. And heart failure. I no this as my older brother died in his sleep age 46 four years ago. He had a heart condition undiagnosed. My first cousin also has heart failure and was diagnosed age 40 . He didn’t get any warning only breathing problems.
• in reply toSam72-
You’re right about hearts with structural damage being more vulnerable to any type of arrhythmia. like those occuring in people who have had a heart attack, or have congenital heart anomalies. However, supraventricular arrhythmias in intact hearts, are not considered life threatening. What makes the difference is not the type of arrhythmia, but wether the heart is or not severely damaged.
Sam72-• in reply to
Hence why people like the lady on this page and me who no about ectopic beats panic more and try to do are very best to believe that they won’t hurt us but no in the back of are minds ectopic beats can in some cases lead to other problems. I am just saying this as I don’t mean to be rude to you at all , however your information and knowledge comes across like someone who is in the medical field, IE a technical person or EP or cardiologist. I have seen my fair share of cardiologists and drs and techs but until my EP study on the day of my procedure, was all my conditions spotted. So by my own experience with all my problems I no ectopic beats can be a problem and also a warning to other problems. I wish my crap old cardiologist would have sent me straight to an EP years ago to have my study done as I might have not ended up with PAF !! I agree with emotion and also hormones as with me can indeed give you ectopic heart beats, but the last thing a person wants to hear that has a run of them that won’t go away is don’t worry and stop thinking about them ? That’s not very reassuring and makes a person more anxious about it . At least some trying breathing exercise or if they are really troubled by them go and see a dr or go to AnE ! I went to my dr and then ANE and ended up in the cardiac unit . So in my opinion if someone has tried breathing exercises and they haven’t gone or anything else I would advise them to seek medical help as a simple ecg can put ones mind at rest .
Well said Sam. You are one feisty lady and I have nothing but admiration for you xx
Let’s just say I have had my fair share of DONT WORRY ABOUT IT AND TRY NOT THINK ABOUT IT !! Over the years 😏 it drives you mad and right up until my procedure I new they were going to find more than PAF ? I told the EP right before it , low and behold I had SVT , PV tach , and documented PAF . They froze and burned me on the same day . Also had a implant loop recorder in for 3 years that I was told was useless and didn’t pick up my problems . Honestly I find trust very very hard right now . I would definitely not give any one advice that I would not do or take myself and that is ! You no your own body best , if something doesn’t feel right you go and get checked out hun . I went once to ANE sent home , back to dr then back to ANE the next day and was in SVE !! Ended up on the cardiac unit over night but was in sinus rhythm so was ok 👌🏼 if it happens again I will take myself back to hospital again. That’s what they are there for and it’s there job to care for people as a fabulous paramedic told me that’s his job because I didn’t want to waste there time being told it’s anxiety every time . I think we are all a lot stronger than we no and it’s just something are brain has to get used to 🤯😊👍🏼 hope your feeling better 💓❤️xx
• in reply toSam72-
I only provide medical information that is universally accepted. Each one should take it as information only. and no one is expected to agree.
• in reply to
Thank you tachp
Another informative and persuasive post (about the mind body interaction)
Hi. About 6 weeks ago I had around 6 cocktails and spent the early hours of the morning in af. My heart was probably racing at around 150bpm for around 3 hours. I didn't do anything about this just thought I would ride it out. By the morning this had stopped but ever since then I have been getting constant ectopic beats throughout the day along with a very strange quivering in my heart which I cant explain. I have had echo, ecg, seven day holter and stress test done and all is ok.(250 events recorded in seven days of ectopics). I am sure that the doctors think I have major anxiety however it is the extra beats and the quivering that are making me anxious.
I have read that sometimes premature ectopics can cause sudden death. Is this true? this really is now making me freak out. I visited the gp this morning who checked my heart and is referring me to cardiologist as heart rate is very slow with a lot of ectopics.
Any replies would be good to reduce the anxiety now felt.
• in reply toprincesscaroline
Hi Caroline
Rather than hijack Gwersey's thread, maybe it would be better to start your own thread with this question. A little more context would be helpful. More information about relevant medical background please!
That said isolated ectopic beats do not ever as far I know, and I am not a doctor, cause sudden death except possibly very very rarely , when certain drugs cause a prolonged so called QT on the ECG.
You have the option to buy a Kardia and post the ecg strips here. There are doctors on the forum who may be able to give you advice after seeing a strip, ideally a 1 minute recording during the period of ectopics, also when your heart rate is slow (how slow was it at the surgery?)
And yes you lot I do know that I am always hijacking other people's threads. It can be quite annoying for the OP and tends to make it harder to stay on topic.
• in reply toprincesscaroline
Ectopics or premature contractions do not cause sudden death, ventricular tachycardia can, because it may degenerate into ventricular fibrillation or cardiac arrest. This usually happens in severely sick hearts or in people born with congenital cardiac conduction abnormalities. Most everybody has ectopics now and then without consequences. Of course, do not confuse arrhythmias with harmless ectopics. Only the EKG can tell the difference.
I had significant ectopics regularly post ablation and they did not go away on their own or with deep breathing or with other non-prescription supplements such as magnesium (no AFIB thankfully though). I went back on a low dose daily regimen of metropolol and Flecainide which has done a very good job of minimizing/eliminating ectopics for me. Talk to your specialist and consider a 24 hour monitor to measure the ectopics both atrial and ventricular to ensure the quantity of beats for either is not excessive.
Best of luck
Identifying triggers is very important!
Sometimes getting ectopics when you have eaten or drunk a "trigger food" is kind of reassuring because it shows that you are getting to know triggers.
Experimenting and cataloging can help a lot.
Hi goldie
Can I just put in a word for those of us on Sotalol.
As is regularly repeated here, Sotalol is no longer recommended by NICE for first line rhythm control for paroxysmal AF. However it is apparently widely used across the English speaking world outside the UK. I believe that many cardiologists in the UK ignore these particular NICE guidelines. As do many doctors in other fields.
Some of us have been on Sotalol for many years, 8 in my case, now 120mgs bd. It would be inappropriate to alarm members taking Sotalol simply because of what NICE says. EPs know all about the National Institute of Clinical Excellence and choose to ignore guidelines for some patients, children included I believe.
That said Sotalol can be problematic for some of the tiny number with congenital prolonged QT, or those starting some antidepressants, which very occasionally cause prolonged QT syndrome. ECG monitoring is the norm at the start of Sotalol treatment and with the combination mentioned above.
...............
Is it safe to come out yet? He doesn't half go on, that Badger feller. ..... 🖐 [ talk to the hand? ]
Thank you both very much for your replies. When I had my ablation it stopped all of the ectopics. Slowly over the past couple of years they have increased however the past six weeks have been totally debilitating. What is considered to be isolated ectopics? I will start a thread so as not to upset anyone though.
Will do.
You have my TOTAL sympathy Gwersey. I have very complex arrhythmias and am waiting on a pacemaker. I have prolonged QT syndrome and other problems. And believe me...... Multiple ectopics make me EVERY bit as down as the more 'serious' arrhythmias I have. I have had weeks of misery with ectopics. I hate being told they are 'harmless' or being advised by people who haven't had severe and enduring symptoms EVER or in years to put mind over matter. Load of NONSENSE. that is patronising nonsense advice. Ectopics are shocking, depressing and debilitating. BUT... They will pass.. And if they don't, there is treatment for them or medications that can be tweaked. Don't give up... Be your own advocate. Don't be dismissed by any doctor, nurse or know all on this site who tells you to pull yourself together. Be proactive. This too shall pass. Thoughts and best wishes to you xxxxx
Thank you Vony. I'm determined to "woman up" in future dealings with medics. Today I was being fobbed off by a GP but I persevered and she agreed to change my meds in the end. Just hope they work, otherwise I'll feel foolish. Xx
Foods are frequent triggers for migraines, but not so much for AF, unless they contain stimulant substances like caffeine. Alcohol is another very common trigger, to the point that a prominent cardiologist has adviced to try an absolute abstinence period from alcohol, before considering an ablation. He said that in many cases the ablation was averted with the abstinence. Another very important trigger, that is rarely mentioned, is restless sleep and sleep apnea. All patients with AF should have a sleep study to rule out this common and very strong trigger.
I’m in the same boat. I have so many and so often that I want to cry. My arrhythmia nurse has told me there’s no need to worry but they make me feel helpless!!
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