Can I ask Amy fellow ectopic sufferers how they cope with daily prolonged ectopic episodes.
I have PAF but haven’t had any episodes of that for months, however my ectopics have escalated considerably recently.
I was diagnosed with PVCs and some PACs several year ago but only experienced a few every day. Since having Covid twice, these increased to around 200 every day which at the time I thought was horrendous but now wish I could go back to that.
Over the last week or so, I have calculated that I am now experiencing in excess of 10000 a day, all of which I feel. . I am fine when active and have none but when at rest or trying to sleep, they slowly creep back in and can be constant ie every other or third beat.
Thankfully, I have a cardiology appointment this week where I hope they will take some interest rather be dismissive of this so called benign condition. This appointment is to no doubt discuss AF but that’s not really on my mind.
The anxiety it’s causing is no doubt contributing to further episodes and I find myself sitting with the Kardia waiting for it to start so I can take a reading. It’s becoming all consuming and I dread going to bed at night.
Are there any other sufferers who have had the same experience and how do you cope or keep sane about it?
Thanks to all
Nick
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Keswickman
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Lock the kardia in a drwaer and do the slow deep breathing exercise. Use diaphragm not shoulders and slow to less than six breaths a minute for at least five mnutes. Longer if possible,. Works a treat. Anxiety is your worst enemy. Relax.
Bob I am so glad that you said that when I first joined everyone wanted one. it was all the talk. It was all the discussion. I did not buy one. The only thing I bought was an oximeter and even that was making me crazy. My EP told me to stop using devices. I did have an implant of a monitor, so my doctor would get Notified and has been if something is not right. Even if I’m feeling something if they haven’t notified my doctor then it’s not all that important. That’s why he went to school all those years and did everything he has done to get to where he is I have faith in him.
With my pacemaker I have a telephone app and he doesn’t want me looking at that either last July I was all upset because my battery life dropped from 11 years to five. Five years is good but what made it drop when it was brand new and what if it drops another five does that kill me? That’s what was in my head. I have a one of a kind pacemaker strictly made for me. (FYI not the actual device, but everything that goes with it). My doctor had me come up to his office immediately and had the tech from Medtronic who has been with me since my surgery and one of the engineers on the phone. Yes, it takes a village. to take care of me evidently lol my doctor said I was unique. I am hoping by now others are using his methods because he was invited to Dallas to teach other. EP’s. After he presented my case to them. When he said I was unique, I thought he was teasing me turned out he was not, and they want other EP to be able to save people like me.
I just read several replies, including yours on here about the kardia, etc. I was so glad to see how many people are getting off that thing. We are not doctors maybe sometime we don’t have to know everything because we are not trained to understand and decipher it.. It’s like looking at an EKG. We may understand some of those peaks and valleys but we don’t know everything and what we don’t know can scare the heck out of us. Lucky for me. I asked a lot of questions. Working a lot and enforcement you do a lot of that and I don’t care who I ask. when I want to know something I will go right to the top if I have to and I have lol
If the ectopics are worse at rest it could be vagally triggered. Have you any gut symptoms which sit alongside the ectopics - burping, acid reflux, bloating etc?
The vagus nerve is the tenth cranial nerve and interacts with the parasympathetic control of the heart, lungs and digestive system. It is the longest nerve of the autonomic nervous system and was previously known as the pneumogastric nerve. One of the tasks of the vagus nerve is to mediate the lowering of the heart rate.
When the Sympathetic and Parasypathetic ANS get out of balance you can get this stimulation but there is a lot you can do to mediate them yourself.
Have you tried breathing exercises - LSD - Long, Slow, Deep breaths? Slowing down your breath rates sends a bio-feedback to the system that it’s time to relax and ok to relax.
Have you any gastric symptoms which sit alongside? If so there is quite a lot you can do to mediate their affect as well.
The one thing I found is that I must be in rest and digest mode - Parasympathetic - ie: calm and prepared to eat - I used Mindfulness eating for that. Then I was really good at jumping up from table and rushing around straight after my meal, now, even though my husband feels abandoned to clear the dishes, I ensure I rest for at least 30 minutes after eating with a warm drink of herbal tea or water and lemon.
I fell across a rather good (I thought) blog recently MyAfibHeart which has a blog about coping with ectopics which you may find helpful
I suffered them for about year following my second ablation and thought they would never go and they made me feel rotten - but I was the opposite of your situation - I was good at rest but exercise triggered it. I did a lot of work in improving vagal tone and getting back in balance and have not been plagues with them since.
I wouldn’t be too surprised if this is dismissed by your cardiologist, however, there is a growing interest in this field.
And yes, I have some IBS symptoms and sometimes bloating.
I have bradycardia and resting heart rate drops to around 50 so I know beta blockers will never be good for me.
You are so right about eating and getting up straightaway though. I’ve barely finished eating and I’m up to the dishes and I do eat fairly quickly. Love the mindfulness eating idea, will try that immediately.
Thanks so much for taking the time to reply; makes me feel a lot better and having comments from like sufferers means so much more than a dr being a bit dismissive of this.
I know you’re right Popepaul. The only good thing is that I can actually show the cardiologist what’s been happening because soda law says that if I have an ECG on Friday, it’ll be perfect. Thanks
Hi Kman, I think we might have had a few posts about this last year.
In the early days, before treatment, ectopics were always the harbingers of an Afib episode and consequently I was/am very wary of them.
I did suffer badly from ‘ectopic storms’, which drove me ‘mad’, robbing me of sleep. Anxiety just enforced a negative feedback loop that descended into more ectopics. They were investigated by my cardiologist, the burden was actually not that high, less than 3% and he wasn’t overly concerned. It didn’t feel like that, sat up and alert at 3am, slavishly watching 5 pvcs on my Kardiamobile trace. Anxiety is definitely a catalyst and an amplifier; getting control of it, is the way forward. I turned to a course of cognitive behaviour therapy and for a period, an evening sedative. This worked for me, it broke the cycle and it all settled down.
CBT - I was always a bit sceptical about the whole area - talking therapies/mindfulness but it did help; don’t ask me how though 😀 The sessions covered how to spot unhelpful patterns of thoughts, feelings and behaviours and techniques on how to deal with them.
I still have ectopics, daily, my Afib is vagal in nature and I tend to pick up on ectopics after I’ve eaten. I still have runs of them too, Dec/Jan is always bad for me for some reason and I had a stint recently for a few weeks. They don’t bother me the same and I know I cannot let them ‘get into my head’. I literally give myself a good talking to - “ Ok, ignore it, breathe in, carry on (or in bed rollover), my heart is not going to stop.” As I mentioned previously , it just breaks the cycle of catastrophic thinking (especially at night ) which descends into anxiety and promotes more ectopics.
The others have offered good advice.
- Kardiamobile - I think mine is great but you need to put it away. I use it now occasionally, if I feel different- just as a check. ‘Ectopic Storms’ - have a look, yes it’s telling me what I know - some PVCs, no Afib - put it away and carry on.
- Breathing - yes great technique - LSD.
CBT - I would maybe explore this, I was dismissive but it can help alter your mindset and that makes a real difference.
You make an interesting point about Bradycardia, my RHR is sub 55, a lot of the time. I was told that with such a low HR, your heart just has time to throw in some extra beats; maybe it’s getting bored. Again my cardiologist isn’t concerned about it.
I’m sat here now after lunch, I can feel a few but I’m not gonna focus on them. I ran 6k this morning and did a 35k event at the weekend - I’m fine, ok a few ectopics but I’m fine.
The Kardia has gone in the drawer and isn’t coming out!!
I’m also the worst Dr Googler and should really stop that aswell but I do look at Dr Sanjay Gupta on YouTube who I think talks a lot of sense.
Hopefully mediation techniques from Headspace will help and keep me calm.
I don’t run any more, wish I did, but a dodgy knee stopped me a few years ago. However, I am still pretty active and walk the Lakeland fells daily usually around 10 miles a time which is great for clearing the head.
It must be great with Skiddaw and Blencathra on your back door step. I’m quite sure, I could ‘get lost’ up there on a daily basis and not think about ectopics. Reminds me, I need to do my annual winter hike up Helvellyn too 😀
I would suggest put the kardia away. I say that from information from my doctor, my EP. what good does it do to keep looking at it he told me he didn’t want me using any devices. Now with my pacemaker, I actually have a phone app. He wants me to stay off of that as well. It is for the other end to Monitor not to drive myself crazy with.
our heart rate changes so quickly and so often that you will be spending all your time with your kardia and being afraid. Anxiety is definitely the enemy. I already had PTSD and anxiety/panic attacks before a fib. My medication has always been to help me when I’m having an episode. The problem with doing that is it seems like forever when you are in an episode before you can get out of it it’s a real nightmare, my EP told me I need more than as needed that he thinks I don’t realize that I need them more than I do and by the time I take one it’s too late it’s going to affect everything at that point including my heart. Well, I relayed that to my other doctor And was put on clonazepam two times a day. What a difference. The one I had to take is needed was lorazepam and one thing I disliked was the hangover. From it. None of that now and I’m guessing that it’s working because I feel normal. My heart feels normal. My a fib normally does not act up anymore, but my atypical flutter does. For those of you who think these things are going to disappear forever just know even with a pacemaker you will feel them from time to time. When my EP explained that to me, I felt so much better. I Wonder how many doctors tell their patients this after they get a pacemaker? I am grateful to have a great educator of a doctor/EP. I don’t remember what I said but he stopped and looked at me and said yes you’re gonna feel them you will always feel them. Maybe it slips their mind that we don’t know that. He then went on to tell me, but it no longer can hurt your heart because your pacemaker is taking over everything. It does not listen to the flutter or the a fib anymore.
Can’t think of a better way to make me understand than he did. I had begun heart failure by getting my AV node ablated and my pacemaker, my heart was given the rest it needed, and actually reversed my heart failure because it was done in time.
I do not sugarcoat things I’m not gonna tell anyone here that your pill ablation or whatever is going to make you a new person or back to the one you were. Some people are lucky and find a way to control quicker than others. It’s like a Band-Aid it’s not a cure. Just like a Band-Aid, your meds or whatever may need to be changed all medications. Usually there comes a time where our body just gets too used to them, and they no longer work like they should.
They say Knowledge is power. Because of that, I have tried to learn as much as I could, but for the layman. , I’m not going to be an EP surgeon. I don’t need to know technical terms for everything or numbers etc.. I leave that up to my Doctor Who I trust with my life. What I have decided to learn is to ask questions when something disturbs me so that I am no longer upset by it because it’s a big circle if you get upset it is likely that it will cause symptoms
once again, I firmly believe in the mind body connection
best of luck to everyone dealing with this monster the most important thing I can say to you is be realistic
Hi keswickman , I have PACs and they make me breathless .
One thing that seems to help is going for a walk and using my slow breathing and counting breaths while I walk in fact I used this technique today with success. Doing this is a distraction, calming and if I am lucky seems to settle my PACs.
I’ve found that deep breathing sometimes helps but not always. Eating smaller meals and relaxing after eating helps at meal times but the main problem for me is the early hours. I am waking around 3 am when they kick in and for 2-3 hours I am having 15-20 ectopics a minute; it’s constant. That alone means about around 4000 so my burden is quite high but I have no breathlessness or lightheadedness at all.
Seeing a cardiologist on Friday so hopefully get some answers and help.
Hi Keswickman, it is not so much deep breathing but slow breathing .
I can no longer post a link because of site rules but friend to AFers Dr Sanjay the York Cardiologist posted in a video detailing a paper he had read about an exercise which helped reduce ectopics in some people (for full details see Youtube video = ''Heart Palpitations: A simple exercise to help ectopic heart beats'') by York Cardiology
We normally breath 12-15 breaths pm , the study was about slowing that by about half so breath in slowly for 5 seconds and slowly out for 5 seconds and do that for 5 minutes.
We know when we sleep our breathing automatically slows down and our heart rate falls, so it seems logical that this excercise can affect the heart . As I said before I combine it with a walk and it frequently works for me .
Sorry you are feeling like this, lay off the Kardia as much as you can, Pvcs are a pain in the bum, I found that taking my beta blockers helped with the symptoms but never really stopped them, I had bigemny for days on end sometimes then weeks with nothing, I beat myself up and tried everything to stop them, nothing helped, it’s very easy to blame yourself but it’s mainly electrical impulses in your ticker(not your fault, just unlucky). I had an ablation for pvcs of the rvot area in dec 23 and so far so good. Before this the best way I found of dealing with pvcs was to try and ignore them and live my life as best I could and that really worked. As long as they are not throwing your heart off in to any other arrhythmia, which you would feel, then ride them out. Being busy really helps. Are all your echos and everything else structurally sound, if so take comfort in the fact that you’re not gonna drop dead from these pains in the bum and you are certainly not alone in this, some people live long and happy lives in bigemny. I had the ablation as my ventricles were slightly enlarged. Please don’t beat yourself up .
You are right but it’s the anxiety that beats you up. Cardiologist said he wasn’t concerned as I have a normal heart even when it goes on for hours. He has prescribed a beta blocker as a PIP but am now concerned about that as I have bradycardia and these may take my heart rate too low.
That’s really good to hear, my heart rate is normally around 57 bpm but goes below 40 bpm when asleep. It hovers around 40 45 when resting with beta blockers. Slow heart rate is only a bad thing if you feel bad. If you are really symptomatic take one, that’s the thing with beta blockers if you have been prescribed by a professional they are safe.
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