I’m having more palpitations/etopics ? I’m fine sitting down , but soon as I stand and start moving ,walking , I get my pulse in my neck going beat beat then like a missed or extra beat , until I sit down again , it’s awful as I can not do nothing , I ts there in morning slightly , but always around afternoon it starts , I have 2.5 bisop am 2.5 bisop pm with 50 flec , spoke to my doctor said add in more bisop , tried taking extra 1.25 bisop yesterday around 3.30 made me feel unwell , but still needed to take another 1.25 eve to get my full Eve dose , I walked to shop and it did it all the way there and back ? Very frightening 😔any ideas on what I could do please , I want my life back , been off work since Easter,seen cardiologist couple of weeks back all ok , but now this , have left messages etc for them to contact me but not a thing , I have now had to go under the mental health team due to extreme worry anxiety, trying everything to get my heart to settle , I was on flec 50 am and pm but I started to feel unwell so reduced after 13,yrs , just wondering if I should add 50 back in morning, tried 25 mg but no difference , I’m at a point where I think what’s the point 😔
Realy don’t know what to do no more - Atrial Fibrillati...
Realy don’t know what to do no more
Sorry to hear you are still having worrying problems. You don’t have any stomach issues do you? The reason l ask is because trapped wind can do this. I sometimes get palpitations after a meal. A large meal is not advisable, so small and often. Ectopic beats are harmless, which l also get, but they can be disturbing and unpleasant. I can’t comment on your medication because l am not a medic. so do what you think is best and what helped you previously. You did well to get to the shops. It can be scary so deep breaths and remind yourself that your heart is ok. Hope you soon get some peace from this.
Not stomach problems, but I don’t think it’s normal to have them everyday and everytime I move , I’m taking diazepam to help but I’m realy a nervous reck 😔
soon as I got out of bed they started , which dosnt happen realy ?
Bless you, I think there are times when we are suffering more than usual from AF that we all think, 'what's the point'. Believe you me, you will look back on this time. I used to have a fast heart rate in the middle of the night, felt like it was trying to get out of my chest. I thought I would surely be dead by morning. I would text my daughter asking her to check on me when she switched her mobile phone on in the morning.
Here I am now 19 years later still alive and kicking with a heart rate that stays between 60-90bpm. You will get better but sadly nothing is quick these days. It could be a vicious circle and your anxiety is causing the strong beat in your neck. Do all you can to take your mind off of it. See friends, go for a slow walk in the countryside, do some gardening, read - anything that will take your mind off your heart beat. I would mow the lawn, full of self pity and feel drained in the evening and think I shouldn't have done that, but without fail my heart would go back to it's normal rhythm a few hours later.
Keep in touch please and let us know how you get on.
Sending you a big comforting hug.
Jean
I’m just so worried as evertime I move it happens xx Thankyou for your reply xx
You have some very good advice here from our lovely Jean. Trust what she is saying, because as she has said, she has been there and it will pass. You will be ok and your heart is strong. Try very hard to think of something nice and keep busy. Singing can help. Jigsaws are also good. We are always here for you.
Thankyou , I just get them everyday , and can’t ignore them , feeling quite ill , just spoke to at nurse eventually. Said do up my morning bisop to 3.75 and Eve 2.5 with 50 flec
Good that you have spoken to a nurse and hope that will help, Thinking of you.
Thankyou
I get anxious at times. When I feel this I go to jigsaw puzzles on my phone. Works to relax my mind
Thank you for your message, I would advise contacting your doctor to let them know how the episodes are impacting you and discuss further treatment options for you.
Your ectopics are uncomfortable but not dangerous. If they were dangerous your doctors would have done something else. The more you worry the worse they will be. It’s good you have support and medication to help calm you. Every time you feel the panic coming on think of Jeannie giving you that big comforting hug she sent 💞
Thankyou iam such a nervous wreck at the moment, can’t work don’t go out , no life , fingers crossed this increase in medication works , have you ever tried diazepam ?
Once, for a week. I know you feel you can’t go out, but you can. Try a bit every day, baby steps. We’re all behind you!
Thankyou for all the support I’m getting xx 💐🌼🌻🌷🌺🌸🪻🌹
this sounds very similar to what I had and self-diagnosed myself with Pots (Postural Tachycardia Syndrome). I was okay until I got up and started moving around. I was terrified for 3 weeks and was in a & e about 6 times. My dr prescribed 10 mg Propranalol twice daily which stopped the symptoms but brought my bp down too low. I realised food seemed to be a major trigger and went on a strict elimination diet that has helped a lot and am now on half the dose of meds and reducing further. I have read that Propranalol helps with Pots but other beta blockers don’t. If you have allergies, they may be causing your symptoms due to inflammation and histamine/adrenaline response. I can provide more info if you would like - doctors are not interested in the causes in my experience. Some of the worst triggers for most people are aspirin, caffeine, alcohol, cigarettes, vitamin supplements, artificial sweeteners, sugar, refined carbs and wheat/gluten, aged/cured/fermented foods but also healthier foods (fruit/veg) containing salicylates, amines, glutamate and oxalate.
Thankyou , yes please more info would be realy helpful if that ok
Do you suffer from any known allergies? Skin problems, migraines, Candida. Or other conditions such as diabetes? There is lots of information on Pots online and a support group. There are also simple tests for it - measuring heartbeat when sitting down then again after standing still for 10 minutes. If your hr has increased by 30+ bpm, Pots is a strong possibility. Google says there’s no cure and doctors think it may be an autoimmune condition but I think there may be a cure for it. My diet is limited, I’ve lost 20 lbs and feel very well, better than I have for years. Giving up processed food is important.
I have always had very dry skin condition, also have thyroid problem / hashimotos,spoke to af nurse over the phone yesterday, said these are new symptoms she said increase bisoprolol , but I’m feeling sick and tired just need a break , does your heart give out extra / missed beats on movement all the time and only stop when sitting down ? She told me it’s all ok but I’m worried sick as it was a phone call
It sounds like you have auto-immune problems which means there is a lot of systemic inflammation. Doctors won’t address the causes of these issues. A build up of Oxalates (the crystals that cause kidney stones) can be the cause of thyroid problems. Oxalates are super-high in spinach, berries, chocolate, soy, some grains, tea and nuts among many other foods. Oxalate toxicity can cause numerous health problems. Google Sally Norton Toxic Superfoods to find out the foods highest in oxalates. It’s important to reduce intake slowly to avoid ‘dumping’ reactions where the body starts releasing stored oxalates in response to less intake. There is an Facebook group: TLO (trying low oxalates) which will help with lots of information.
My symptoms were mainly rapid heart beat. I have had missed beats and double beats but associated this with vitamin supplements and stopped them.
Thanks for this information Jilly. I had never heard of it, but l have on occasions experienced this. I put it down to “old age,” but on reading up about, it can happen at any age. It does sound like this is what you have Prosecco, so l would speak with your GP. Things can be very scary until you find out why and what.
It can be caused by a drop in blood pressure when we stand up. The heart starts beating rapidly to compensate for the drop. When getting out of bed, it’s helpful to sit upright in bed for a few minutes, shake the legs a bit so you’re not going from flat to upright in one go.
Yes, l suffer with low blood pressure. This all makes so much sense. Thanks
As Jilly had described above, it could be POTS, there’s lots of information on Google / YouTube. Ask GP about it, mine didn’t know anything about it and told me to learn to stand up properly after lying down! There is a test for it called tilt table. But as a lot of have learned AF is triggered by many things and it’s usually being on guard about possible foods/events/mood/mindset/drinks etc that brings it on.
Best.
I have exactly same issues ongoing ectopic beats been off work since Feb told me my mitral valve is severe after a TOE and not helping situation they are a nightmare I feel doctors say they harmless but it’s having big impact on my life. I even purchased a Kardia to prove to doctors they ongoing was advised at moment to up my Bisoporol to 5 mg from 2.5 day and eve to be honest hasn’t made much difference just made me feel even more tired. I’m stuck in house if I go out or do anything can feel them starting and they making me feel unwell I’ve gone from someone quite active to what I feel stuck not able to do anything . I can understand the challenges the ectopics can bring.
Research has shown Propranalol is more effective for Pots. It also is prescribed off-lable as an anti-anxiety med so helps with the panic too.
Hello , yes exactly how I am , I’ve been off work since Easter , felt unwell , now this is happening, I’m now on 3.75 in mornings instead of 2.5 as from yesterday and 2.5 in evening, feel absolutely exhausted, also take one diazepam per day as this helps calm me for a while , can I ask what is a toe?
transesophageal echocardiogram a procedure they did to look at my valve after showing severe changes on my echocardiogram
If you can, get counselling or other support to try and deal with the anxiety rather than concentrating on medication. Important to move around (generally) this is what keeps the heart healthy. Have you tried walking/fast walking/alpine walking? anything like this? My ectopics go away when I exercise, I discovered this when I bought a chest strap (polar) to try and understand my heart rate variability (which is a useful indicator of heart function). It's useful to get to know your heart rather than living in fear of it. I manage to ignore the ectopics the rest of the time, have cut out biso altogether (but I don't recommend anybody else do this without GP support!), now just on apixaban.
My etopics happen when I walk get up move around etc , have to take bisop as my heart rate goes higher , where can I buy a chest strap , would this pick up what’s going on , and keep a record of it
Do you go online? A kardia device is prob. the easiest to use, you just put your fingers on it and it records to a smartphone, I use it occasionally but it doesn't do HRV (heart rate variability). Most of these devices work with smartphones or computers. The polar strap I got on ebay, handy in that it goes with you when you exercise and records to the smartphone.
I have the same problem, but it's when I lie down that my heart rate changes, starting to skip.
When I take two or three breaths, everything returns to normal.
I read somewhere that when you have Afib it is normal.
I've noticed that when I don't think about it, my heart rate stays normal.
Therefore, I am inclined to think that this is the result of your mental set-up.
As Morris2 says try to overcome the feeling of anxiety. Regular movement and gymnastic in the morning help me a lot.
Anxiety is awful for me , I’m afraid to go out as my heart did it all the way to the shop and back for about 10 mins , did not stop until I got home and sat down ?
I have found it is pointless leaving messages you must get to speak to someone so keep at it until you do actually talk to someone. Failing that write or get your GP to contact your consultant.
Here is a typical ECG strip of mine. It's no fun, but the main symptom that you mention is fear. When you say that you can't do anything, can you say why this is?
Mine, like yours, are all originating in the top of the heart. This means they will be highly unlikely to cause long term harm. Bisoprolol seems to be not very good at reducing these, but flecainide certainly can (depending on the root cause). You might ask you doctor if you can reduce the bisprolol a little and increase the flecainide. Also, if they are disabling, then an ablation is possible. I am awaiting one for my AF and ectopics.
Much better, though, is to find a way to allow you to function better alongside them, at least for now. Your GP is the key here or, perhaps better, a cardiologist to reassure you.
Hello I do take flecinide 50 mg every evening , was on 100 per day but found morning dose made me feel ill ,it’s just that when I try to do stuff walk etc they come non stop till I sit down then start up again on movement, it realy scares me and I can’t focus on what I’m trying to do because ofthe etopics , I just breakdown and cry
This sounds much like me. I cope well enough though after reassurance that death is not around every corner!
It’s a difficult condition to cope with, for sure. It’s also one that, because everyone has a few palpitations, the sympathies are few and far between. When it is slight, it’s easy to deal with; when frequent, it’s impossible not to be filled with foreboding.
Your fears are, however, genuinely groundless, like my own. You will live to look back on this time and wonder why it affected you as much as it is doing. Let’s hope we both get there soon.
Steve
Seen my cardiologist a few weeks back , now have these etopics etc , so she dosnt know about these , but spoke to arythmia nurse on phone who just said up the bisoprolol and flecinide if I need to , I was ok on 2.5 bisop twice per day with one flec , they were there , but now have got a lot worse , so upped bisop am by another 1.25 , with 2.5 Eve and flec , realy don’t know how I will feel with flec in mornings after upping bisop ?
My GP said that flec + bisop is a balancing act. My specialist shows no concern.
Your ectopic beats are no more than from the same root cause as all else: atrial conduction disorder. Treatment is either none and get used to it (cutting out any triggers); bisoprolol (safe but not often very effective); and flecainide (more effective but riskier); or ablation (75% effective rising to 90% on second).
Yesterday, any movement involving standing up or kneeling down set mine off but no AF yet to my surprise since my single first 50mg flecainide tablet two weeks ago!
Steve
Was on flec for 13 yrs , why is it riskier , I’ve had 2 ablations
All anti-arrhythmia drugs carry risks of sparking serious ventricular arrhythmia, I gather. Flecainide can also set off fast atrial flutter (hence being co-prescribed with a beta blocker often). Amiodarone is safer in that respect but carries other risks.
Steve
My answer would be the same as Jean, I've had this damned nuisance of a condition for over 20 years and yes, still here to tell the tale.
normally flecainide is 50 morning and night rather than just 50 at night. Just taking at night it only has a 12 hour lifespan so your afternoon attacks could be thst. I think I would go back on morning snd night until you manage to see your cardiologist or EP
As you no doubt know flecainide is a rhythm control snd bisoprolol is a rate control that’s why only on personal experience the flecainide is better
I do hope you feel better soon
Thankyou
I feel for you as I know when my heart felt as if it was going to jump out of my chest it’s so worrying and frightening. I found going back on flecainide 50mgs morning and might snd lowering the bisoprolol to 1.25mgs in the morning helped a lot. I did check with both my GP and EP on this snd they both said if I felt ok on that they were ok with it too.
Is there a limit to bisop and flec together , I’ve always did 2.5 bisop am with 50 flec now on a extra 1.25 bisop am , I do flec 50 and bisop 2.5 evening ,
Well I don’t know as I’m not a doctor, but I was put on 2.5mgs of bisoprolol but I felt so lethargic and low BP that my GP reduced it back to 1.25
As flecainide and bisoprolol are two different drugs (rhythm and rate) I wouldn’t have thought that there were wrong degrees of limit, but I couldn’t say.
Personally I find 50 x2 flec snd 1.25 bisoprolol is ok, especially as 300 is the max for flec and 10 max for bisoprolol, but never go to those limits without doctor advice. It wouldn’t hurt you to try for a few days the 50 x 2 flec snd 1.25 or 2.5 bisoprolol until you speak with your cardiologist
Just please remember I am not a doctor just going on my own experience. I am now 80 in august and have had afib/tachycardia/ectopics for 40 years.
Big hugs
It’s horrible no wonder you’re feeling so worried. I suffer with them too and they really do play on my mind sometimes unfortunately.!! I don’t know what to say apart from just keep in your mind that they won’t kill you. Keep intouch with your doctor as they may change your medication dosages or change some medications for you to try.👍
Thankyou I will try , I never thought I’d be like this , it has caused me very bad anxiety and I’m now under the mental health team , because of all this , everyday is a battle for me , I hope you are ok
I’m not surprised you feel like it’s a battle I totally understand where you’re coming from. Over the years Iv had counciling, meds, mental health appointments etc. my ectopic beats have caused me more fear/anxiety and low mood than my afib ever has.!! My mind is constantly tuned into every single missed beat/thump/ quiver etc and it’s awful.!
The one thing I can tell you is they won’t kill you. Iv had them 30 years and had scans,bloods, tests, echos, all sorts. Iv had a few weeks break from them so feeling a lot more relaxed now. What is your main fear or worry about them may I ask.? Everyone is different and my main fear was that I was going to die or they are going to be here forever and that my life was over.!
Hello my main fear is dying , and I have an absolute phobia of them , any thing I feel differently to normal heart beat sends me backwards Everytime in my mental health help , I wake in mornings and think oh no here we go again , I feel like cardiology is missing something, because they take my anxiety as not helping , told her my new symptoms over the phone but she said up bisop , I just can’t live a normal day without fear
You’ll get there. It’s hard but believe me. There will come a time when the fear isn’t as overwhelming as it is now. It still scares me even now but it’s not the terrifying debilitating fear that was once there and it’s a lot more easy to handle. They will hopefully disappear as fast as they arrived. Try the meds increase and see how it goes. 👍
I started on low dose and over the years Iv had mine increased too.👍
Thankyou to everyone who has replied to me , realy in a bad place at the moment , but all your advise is helping 🙂I’m hoping increasing my bisop helps
I have had similar problems. I gradually reduced my Flecanide to 25 mg in the morning and 50 at night- with EP cardiologist’s approval. Gradually increased exercise. It takes time and grit sometimes but you can find a balance between meditations and exercise. I’ve gradually gotten a good balance and have few ectopics and more energy after 3 years of trying various meds and exercise levels. I had given up on exercise altogether at one point. You can do it. Just get your doctor to work with you. Sometimes my GP was better at listening and advising than my EP at the time. Good luck to you. It can be better!
bloody awful how this damned thing can make you feel and destroy your confidence in yourself - it’s all too familiar to a lot of people on here - what treatment have you had so far ? Maybe it’s time to push the medics to see what else can be done to resolve or improve what you’re currently experiencing - I had an ablation December 23 and been AFib free for 7 months - don’t give up hope and very best of luck !!
Hello I had 2 ablations 2015 , then was put on bisoprolol and flecinide , for abit they couldn’t ablate , all worked well for 13yrs until I started to feel unwell with meds , tried diltiazem and verapamil , which sent my heart rate high , so now back on bisop 3.75am 2.5 pm with 50 flec
It’s so worrying isn’t it , I have lost myself , feel a nervous wreck , cardiologist looks at my anxiety more than she actually realised how I’m being effected , feel like I’m going round in a circle 😔
Absolutely - it’s such a varied bloody thing in terms of how it impacts people - with me it became intolerable with almost daily episodes for about 7 months up to 180bpm which left me feeling shattered but it was the randomness of when it would occur that just pulled the rug from underneath me and confidence in myself just started to plummet- different story now and confidence growing all the time. What I know is that I had to push, push, push the whole way through (initially GP was what are you looking for, you’re on the right treatment (Apixaban) there’s nothing more that can be done! So I learned everything I could - bought a Kardia, booked a private appt with a Cardiologist, got a proper diagnosis and got onto an NHS waiting list for an ablation. couldn’t take any drugs to aid control it as had a previous heart attack so with the choice of the cost of ablation and the prospect of maybe needing it twice, had no choice but to wait it out - 7 months and had an ablation. I’m babbling on but what I’m saying is never give up and push like hell as I have no doubt there’s a route to get you out from where you’re at, at the moment - very very best of luck you get onto the right route again soon
Thank you , I’m pleased you got a good outcome from pushing , and are feeling better I will keep you updated in my progress
I had continuous ectopics for a year. My cardiologist told me not to worry because they were "benign". But the ectopics made me feel very unwell. My electrophysiologist (EP) told me they do not normally do ablations for Premature Atrial Contraction (PAC's), which is what the ectopics were I was having most of the time. But they can do an ablation for them if a patient is very symptomatic.
After a year of having the PAC's, and feeling very uncomfortable with them, my cardiologist started me on 25 mg Flecainide. It did not stop the ectopics. So he increased the dosage to 50 mg. It stopped the ectopics for a couple weeks and then they came back. He increased the dosage to 100 mg Flecainide every 12 hours (twice a day) and it stopped the ectopics. It's been over 2 years now since I started the 100 mg twice a day dosage and my ectopics have stopped. I also take the beta blocker Carvedilol. I'm in the USA. It seems most of those here in the UK take bisoprolol. Not sure if Carvedilol is prescribed here.
Everyone is different. What worked for me may not work for you. Please do not try changing your dosage on any medication, especially Flecainide, without consulting your cardiologist first. Another thing you may want to discuss with your cardiologist is having them put you on a heart monitor for 48 hours or so. They can then tell what type of ectopics you are having. A high percentage of Premature Ventricular Contractions (PVC's) can be more serious than Premature Atrials Contractions (PAC's), as too many PVC's can lead to cardiomyopathy.
Thankyou for this , I shall try more flecinide , as always been on 100 for 13 yrs
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