Really not sure about this

My arrhythmia seems to be evolving and I wondered if any of you can shed any light or had any experience of these symptoms.

I am having on occasion having a feeling as though my heart is swelling in my chest then breathing pauses, I gasp for some breath then everything starts up again as though my heart had stopped. It probably goes on for about five or six seconds and is very unnerving. It Seems longer though.

My ectopics, pacs, when they start range between five in a minute to twenty five in a minute and make me cough. These are becoming a way of life this past month. Flecainide eases them for a few hours then they build again.

Lastly I am having bouts of extreme exhaustion which hits out of nowhere any time of day or night which then heralds a nasty faint feeling but I don't pass out just get the blood draining feeling and things start to blacken but then I rcover somewhat.

Had an ecg Thursday awaiting the results. Anyone any experience any of the above especially the first weird feeling I mentioned.

On a good note I had some extensive dental work this morning. No bad reaction to anaesthetic or bleeding (I take rivaoxaban ) and did not stop it for the treatment. Indeed my heart was very calm after I had the anaesthetic.

Have a good weekend all and thanks for responding if you can shed any light on the above.

Be well all,.


38 Replies

  • Hi Dee, I can relate to the gasp for breath and feeling your heart has stopped, then restarted. All I know to maybe explain it is that I get runs of ectopics pretty well all the time if it weren't for my drugs, so putting two and two together, I'm guessing it's ectopics or a cluster of them. I do stress that I'm guessing. I've never had an explanation or been monitored when it's happened. Like you, I found it very unnerving.

    Hope you find an answer.


  • Hi Koll, thank you for your reply. I am sorry you have them too. It is comforting to know that though. When my Ep returns from his holiday I will seek his input and thoughts. I will report back perhaps he can shed some light which might help us both.

    Have a good and calm heart weekend.

    Dee x

  • I get that feeling also as if the heart is swelling and when i get up i often feel like my heart is wobbly or something has become detached. I often feel as if i am about to vomit when going in and out of AF too recently. And definitely the breathing thing. Also more short of breath. Yep...lovely feeling AF isn't it!!!!! Hope it eases for you soon and your post has helped me as i find the sensations of arrhythmia very challenging these days. Best wishes.

  • Thank you so much Vony for sharing your very similar experience. Sometimes I think we will never have a good day agsin it goes on and on often relentlessly.

    Oh for a medical breakthrough. I know compared to some we are very lucky and I never loose sight of this. I wish you all the very best and hope we all get some relief In the future. Your post has been comforting.


  • Ps. The feeling as if it has stopped could be a compensatory pause or just the heart getting back into normal sinus rhythm??

  • You are. Dry likely correct in this Vony. Thanks.


  • Yikes! not pleasant at all. Good luck figuring this out.

  • Thanks Lorna Doone. We will all get there somehow.


  • Great another question answered thank goodness for this site I too have the breathing thing have mentioned it a few times and again got the. it's all in your head look it's good to know you are not alone

  • Sorry you have the same thing Mazza. Rotten isn't it and very unnerving. It's certsinly not in our head and anyone suggesting it or thst we are overstating things should have a session or two themselves, they would soon change their tune.

    Thanks for responding and be well.


  • Hi Dee - Sorry to hear your heart is causing you concern.

    I've been wondering recently if there's a form of apnoea that can happen during the day, where for some reason we don't breathe as we should! Sometimes I have to make a really conscious effort to breathe, especially when I get the feeling I'm going to pass out.

    Jean x

  • Jean you are so right. I had the same thought yesterday when it happened agsin. It feels just like I imagine apnea does. Perhaps a medic would know if thst were possible but it sure feels like it.

    Had a nasty af episode all even and night but I have to say not bad enough for a hosp visit thank goodness.

    I hope your calm heart time is still with you.



  • Have you checked your pulse when this is happening? I had a very similar experience a few times and I felt as if my heart was pausing which is why I bought an Alivecor. A while ago I had some near blackouts and caught pauses over 3 secs on my Alivecor so I'm seeing my cardiologist this week hoping for an explanation or a referral to an EP.

    I very seldom have noticeable episodes of AF but I do feel anxious about the pauses. I can't have my driving licence renewed and I did feel nervous about being the 'nanny' for my grandchildren last week.

    I'll report back!

  • Hi Buttafly I have never been in a position to capture it. What does it look like one alivecor. My alivecor was sending some very strange signals yesterday most of rich said unclassified.

    I am sorry to hear you have the same issue and do hope your cardiologist ensures you see a good Ep, sad to here too about your driving been disallowed.

    I know how you feel about the grandchildren I have one 18 month old who chases me around.

    It would be good to hear what your medics say and hope they give you some answers. I am hoping to have a Seven day monitor asap so perhaps that might give some clues.

    Thanks Buttafly


  • Unless you have been warned of the possibility of such symptoms by your GP as in the case of new meds. I would go to my GP about this.I am refering to the first para. and your heart/chest, swelling.It most likely has an explanation but I am not inclined to let this go on and on where strange and new,for you, heart symptoms are concerned.

  • Yes you are right 10gingercats, I have not had this diagnosed. I am seeing my arrhythmia nurse Tuesday and will speak to my Ep when he gets back from holiday. I am not sure my new gp has a clue.

    It does not sound or feel good so I am determined to get some tests and answers.

    Be well and thanks.


  • HI Dee, I can't really comment on the heart swelling issue, as haven't had that experience, but my heart does play all sorts of tricks, and like many sufferers who are acutely aware of their heart beat, this can magnify the feeling. I usually describe this to my wife as my "floppy" heart which covers everything from a short AF burst, to ectopics, and other feelings.

    On the ectopics issue, I am happy that the Flecainide has some benefit, but my Cardiologist was sceptical about it helping with ectopics and prescribed a small dose of beta blocker which he said would "take the edge off" the thumping feelings. I'm not sure what other medication you are on, but this has helped me a bit and it might be worth raising when you have an opportunity.

    Finally, on the exhaustion issue, you also mentioned feeling faint and things starting to blacken. I couldn't comment on the exact cause, but one other thing to check is your blood pressure. I know that I have felt faint in the past and it has coincided with a drop in blood pressure. If you have a home monitor, it might be worth checking your BP next time you have that feeling.

    Best Wishes

  • Thanks Bob 56. I never cease to be surprised by the vagaries of this mad condition snd how it can change and evolve very quickly seemingly.

    I take a beta blocker and have been told not to take flecainide without beta blocker so I comply carefully. My gp has asked me to take bp readings over the next week which I am doing.

    I see my arrhythmia nurse Tuesday and will look to have a seven day monitor organised asap. I think she will ask a local Ep abput these weird symptoms but my main Ep is London based and on holiday.

    I hope you are well and thanks for your suggestions. Be well.


  • Comment on "things starting to blacken". If you refer back some two weeks, you can find a post of mine about some similar episodes, together with some replies. The forum came up trumps and I believe I was having TIA's. I ended up in hospital for a few days and left with much increased dosages of Bisoprolol and also (temporary) Ramipril for BP. I also take Rivaroxaban. Back in mid- August to have 24hr monitor and then seeing nurse-specialist early Sept. Only 1 TIA since leaving Hospital whereas had succession before being admitted. None of the medics gave a name to what was happening to me but the description of a TIA was bang on what I experienced. I shall be asking medics when I go for the monitor. Best wishes.

  • Thanks Fletch, you could be right. I am sorry you have had a tough time and do hope you get some answers sooner rather than later. It's a rum old condition this arrhythmia lark isnt it.

    All bets are off I guess until we both get some tests and answers.

    Thanks agsin, be well.


  • have you run these symptoms past a doctor

  • No not yet Frills but had an ecg Thursday awaiting outcome. See my arrhythmia nurse Tuesday Ep on hols unfortunately. All very unnerving.

    I won't leave any stone unturned our hearts aren't to be messed with.

    Thanks and be well yourself.


  • Sounds like a "no fun at all" situation.

    I can somewhat relate to what you describe as heart swelling. If it's similar to what I've experienced, you might try inhaling deeply and expanding your chest as much as possible. If nothing else, it will override any tendency to stop breathing.

    As for the instant exhaustion, I suggest looking into that. I took flecainide for 6 weeks post-ablation (done in early May) and the side effects were so bad I had to quite taking it (100mg 2x/day). My primary symptoms were dizziness and fatigue. Five days after stopping the drug, the symptoms increased by about half. It got to the point where, like you, I felt like I'd pass out. Three weeks after stopping, symptoms progressed to the point where my eyes would get so heavy from the dizziness and fatigue that I just couldn't keep them open. And I couldn't stay awake, either, which I'd call passing out.

    My doc (not Dr Cardio) thinks that while I was taking flecainide did, something happened in my central nervous system that could be similar to multiple sclerosis. I'll be seeing a neurologist and will ask about the consequences of suppressing the brain's immune system, which flecainide does (and is why it's sometimes prescribed for people with MS).

    I sincerely hope whatever you're experiencing is transient. You might stop the flecainide for a while and see what happens.

  • Well Kodaska you raise a very good point about the central nervous system. I remain convinced of a connection, always have done since this af business showed itself some six years ago.

    I had a spell in a and e a few weeks ago and the cardiologist said he wondered about a central nervous system connection in my case. When my London Ep returns from holiday I will be discussing with him.

    I hope you get some answers and the neurologist can give you some help. I am intrigued about the flecainide and Ms use.

    I will take your tip on board re breathing technique.

    Be well and thanks agsin.


  • My doc first tested for Lyme disease, which I don't believe you have on your (east) side of the pond. It can lurk in the body for years and then come out of hiding to create some really nasty problems. One of them is called Lyme Neuroborreliosis, and from what I've read it's a lot worse than MS. The test came back negative so we'll continue spelunking.

    A web search on the terms "flecainide microglia" will turn up some interesting info on flec's use in MS.

  • Thanks Kodaska


  • Sorry you are having a rough go of it, Dee. I've not experienced that but can imagine how disconcerting the feeling is for you. I always think how great it would be if we didn't have to think about our hearts beating. I hope your Dr. has an answer for you from your EKG and that tomorrow is a better day. Be Well. I'm thinking good thoughts for you.

  • Thank you SRM Grandma

    Yes this heart game is a bummer. I look forward to my Ep returning from his holiday in a few weeks time. In the meantime I hope to have some tests so he can see what has been happening on his return.

    I hope things are improving for you after the rough time you have had.

    All good thoughts very welcome thank you. Plenty coming over the pond to you from me too. Take care.


  • Just been reading your posts Dee and I hope your feeling better, I read that you have a fib for 6 years, did you have any ablations. Brian.

  • Hi Brian, not had an ablation. I had an Ep study snd they could not raise my arrhythmias to blitz no matter how they tried. Been told it is like being blindfold looking for a needle hiding in a haystack so chance of finding the culprit is next to nil. Very disappointing as I was hopeful something could be found and blitzed.

    Pvi ablation not appropriate unless other evidence is found over time.

    Be well we all have to hang in there don't we, little choice.


  • It must be terrible to hear that nothing can be done. Ever day is a school day with this condition ,I hope your situation changes soon, Dee. Hope all goes well for you, Brian.

  • I have only had this a short time compared to some of you and it seems to me that it evolves as time goes by so I think we have to be a bit more forceful with our clinicians . I don't want to scare anyone with this but my sister had apparently suffered for years and was told nothing was wrong she was never given anticoagulants ,when I was diagnosed she became more persistant but too late they found she had a cancer and during the op went into AF that caused a blood clot and massive stroke she passed away a month later must add she lived in UK I live in Australia and she was 10 years older she had the same family of Docs all her life and never asked questions as she was old school and took their word nothing was wrong .thank god we today ask questions

  • Must be a painful topic, but appreciate your advocacy.

  • So sorry to hear of your sister Mazza. Yes we really do have to be extremely proactive. My in laws just take what the doctor tells them and never challenge, mother in law is now suffering for doing so.

    I never accept what I am told if I am not comfortable with the answer given or feel fobbed off. We only have one shot at this life and have to take responsibility for ourselves if we don't who will.

    Have a good day.


  • Oh dear Dee sounds awful, hope you get something sorted soon. Hopefully see you tomorrow at the group if youre well enough to be there.

    Take care

    Di x

  • Hi Di

    Yes I will be there if I havto drag myself there. Need to speak with arrhythmia team re a seven day monitor. Think we have Jean leading the group tomorrow.

    Hope all is stable with you. Cu Tom morning. Be well

    Dee x

  • Hi meadfoot you description of the heart pause the breathing thing and the sudden feeling of blacking out with the heart that feels like it has paused or missed a beat happens to me too ....I had a holter monitor a few weeks back which has caught my complaints and am now waiting to see the EP again in 10 days time....he gave me flecanide 80 mg as a pill in the pocket...but my GP has now told me it could send my heart into overdrive because of the different types of strange heat beats I am having. so I am not to take it at all

    ....I have learnt to take magnesium 3 times a day and I also have hydrolyte drink on most days which replaces potassium a little not a huge dose as I have a ibersartin blood pressure tablet that is potassium sparing so don't need much....I have also found that I need to take a breath to stop some of the crappy feelings I get....the symptoms sometimes takes my breath away and then I feel like I will pass out and then my body tingles all over I expect that's an adrenaline rush from the heart playing up....then to recover from this takes up to an hour....I usually have an urgent trip to the loo just after as well....

    yes these heart things are not in our heads at all and so many of us feel the same to similar problems ...I so wish I could get an explanation and a way of not being scarred stiff when it happens ....

    I hope you can get some answers and if I find anything out will post here straight away wishes

    Jo :)

  • Hi Jo. Thank you for your post, very interesting. I hope your Ep can get to the bottom of this for you. Pleased it has been caught on the monitor now he can see for himself. It is frustrating ehen you have nasty symptoms and they don't get caught. Surely now there will be a diagnosis and plan of action. Can't be fobbed off when things have been captured.

    Hoping for a seven day monitor myself. I would be really interested to hear your eps opinion.

    Yes it's difficult when you get conflicting advice. I trust my Ep he is excellent my new gp is fine but not a specialist.

    Be well and thanks Jo.


You may also like...