Sustained presyncope

[Vony]

Just wondering if anyone had periods during arrhythmia episodes where their presyncope is sustained rather than momentary. I have had pauses for a long while now and am used to them. They usually happen just before my heart reverts to NSR. But more recently, I seem to get several pauses in a row and feel about to faint for a more lengthy time. I go down on all fours and put my head on the floor when this happens which does help a bit. Does anyone else experience this? It really unnerves me. I have never passed out thankfully but I feel so vulnerable when this happens and sometimes there is almost a pain in my heart during these nasty episodes. I also get sudden 'thumps' right beneath my sternum which I presume are ectopic but they feel quite violent. After these episodes my heart feels loose and wobbly especially when I move about. Sorry to be so vague but I find cardiac arrhythmia symptoms really hard to describe sometimes, especially when I get symptoms which I am not so familiar with. Any feedback of similar experiences would be truly appreciated. Thank you

[meadfoot]

I have the same symptoms whenever my arrhythmias kick in. They are awful to experience and like you I have to get as low on the floor as possible to try to offset the feeling of being about to pass out. These go on for hours. The worst experience to date was being in cardiac care having been transferred there from a and e.

The episode was so violent a registrar sat on my bed watching the monitor, holding my hand and telling me when the next big wave was coming. They were happening every 30 to 40 seconds where I would almost pass out then return only to come back again immediately. The chest pain was intolerable and even extended to my calves and under my feet, I guess because blood was not being pumped through properly. Eventually I was cardioverted with iv fkecainide and iv morphine for the pain.

All my sustained episodes give me faintness but I don't actually pass out completely. The thumps you describe are regular occurrences with me. I call the fonkey kicks they are so strong.

I guess we all exoerience varying symptoms which are as individual as we are. I have all sorts of kicks, thuds and heart pausing, feeling as though my heart is dithering, plus ectopics regularly which are very nasty but not comparable to the big long lasting episodes.

I hope things settle for you as it's awful to be so troubled with symptoms. This weird condition seems to have little rhyme or reason and I never have understood how we can all be affected so differently.

Good luck and best wishes ongoing. Hope my comparisons help a little knowing you are not alone in your experiences. X

[Vony in reply to meadfoot]

Meadfoot I cannot tell you how much your reply has comforted me tonight. Thank you. The heart 'dithering' is such an apt description. I hate this sometimes. I got scared thus evening because I had a very violent episode during /after dinner and my heart has 'dithered' ever since. My wee son couldn't sleep tonight so I lay beside him. While lying there I started to have all sorts of awful thoughts like 'what if my heart condition has changed and I have a sudden cardiac arrest while lying beside my son'. Honestly I am almost too scared to go asleep now but your reply has reassured me. Thank you so much. Sorry for the anxious post. I felt on the verge of tears earlier. Hope your episodes have settled. I do not understand the sustained feeling of faintness at all. It is absolutely horrible. Xx

[meadfoot in reply to Vony]

Bless you vony, I do hope today finds you more settled. My wonderful EP says my heart is sound and I am in excellent cardio vascular health. Now you may ask how can that be when the arrhythmia symptoms are so violent. I ask myself that all the time. In fact his comments have become my mantra when in the grip of these vile episodes.

In the midst of an arrhythmia tsunami I wonder if he is correct but then when the storm eases and eventually settles I realise he must be right because I have survived, albeit wrecked, battered and bruised but in one piece, still here to fight another day lol.

I do hope you have a good EP in your corner who is helping you, if not I would get one asap.

Do you have any stomach issues like acid reflux, I do and my GP when I mentioned some other weird feelings and pain just below my heart around the top of my diaphragm which made me feel faint suggested this could be oesophageal spasm which can actually make people faint. Just something else in my mix but it helps to know what different things feel like and how to tell them apart.

Trust you are feeling better today. Take care and enjoy your little boy. X

[Vony in reply to meadfoot]

Meadfoot you should write poetry if you don't already!!!! Your descriptions are just absolutely spot on and strangely beautiful to read lol. Our conditions seem to be very similar. You really helped me last night. I was able to go asleep eventually and put the fear to one side. The heart racing through my back onto the mattress woke me up a few times. I can almost deal with that better though. It is when my heart 'dithers' for hours and the random thuds that frighten me as I am not as used to these sensations. It has dithered all day today but only a half hour or so of the sustained presyncope. I am in bed now. I spoke to my manager today who is so wonderful and kind. She has suggested some time off sick until I get sorted as I do find work extremely exhausting. Will see how the next couple of months go. I love my job and love my life. Just feel it is hijacked sometimes by this blooming condition. Have to remind myself a lot recently that there are young people who are terminally ill and would swap places with me in an instant. Thanks for all your support and honestly for helping me ride this tsunami storm! Xx

[meadfoot in reply to Vony]

Thank you. We are all in it together on the forum and I have benefitted from members many times. It feels as though we have a time bomb strapped to our chest never knowing when it will go off. However we go through the fear and somehow are still intact afterwards.

Time out from work sounds good especially when you have a caring manager supporting you. I think I would grab the opportunity and give yourself some quiet time to rest.

As you say we have a lot to be grateful for compared to many. Have you used any techniques like mindfulness to try to calm thoughts or relaxation techniques. My GP referred me to a psychologist who specialises in helping people with health issues I found it very helpful.

Towards the end of last year I went through a very concerning health scare and weeks of scans and tests being prepared along the way for the worst. However I was extremely fortunate in that my condition was shown to be benign. That experience put my heart issue as bad as it can be into perspective so I am extremely grateful and relieved. The stress did however kick me into a huge arrhythmia episode so stress avoidance is a necessity as far as possible.

Take care, you are safe, you will continue to cope and life be full of joy. Be well. X

[Patricia1]

I had a problem with pauses causing presyncope when I went from AF back to normal rhythm. The problem was solved by having a pacemaker inserted nearly three years ago and I have not had any pauses since

[Buffafly]

Hi Vony, I think it would be a good idea to ask for help if you are having faintness caused by pauses when you are NOT in AF. That would suggest your 3 second pauses have lengthened or begun to 'cluster'. I have been told my next option is a pacemaker because I have had an ablation for AF and Flutter and shouldn't take meds to slow my HR.

I had a cluster of 3 - 5 sec pauses, horrible! Please don't put up with it.

[Vony in reply to Buffafly]

The possibility that my pauses have started to cluster sounds accurate. I didn't realise that this could happen but over the last 3 months or so the pauses seem to come one after another for a couple of hours until I revert to NSR. I hate it and feel very vulnerable and uncomfortable. I also have been having a lot more of a mixture of atrial tachycardia and AF rather than just AF. I find the mixture of both harder to deal with as my heart feels like it is just all over the place trying to find a rhythm to get into if that makes sense. I am seeing my EP on 21st February so will see what he suggests. I would rather avoid a pacemaker but am starting to think it would feel wonderful to have a good quality of life back instead of living hour by hour day by day. Thank you so much for the reply and I hope you are well

[Buffafly in reply to Vony]

Thank you Vony, I am fine! I know you are having a very hard time with your AF and didn't want to scare you but I can see you are pretty anxious already and wouldn't want you to delay seeking help for any reason. Good news about your appointment and I hope your EP can come up with something helpful or at the very least reassuring.

Please be sure to report back 💕

[Vony in reply to Buffafly]

Oh Buffafly please don't be nice... I am liable to start weeping today if anyone shows compassion lol. Thank you so much. I hope I feel listened to at my next appointment. My EP is nice but appointments are short and 2 cardiologists have dismissed me in the past saying that it was in my imagination that eating and lying back triggers my AF. They also dismissed me about the symptoms I reported which turned out to be drug toxicity and long QT. I feel vulnerable and so scared at the minute. A bad night's sleep hasn't helped though and my heart has been gulping and feeling 'stuck' and unsettled all day. Just so scared something will happen and my 2 kids won't have me but I know that is anxious thinking and I need to get it under control. Sometimes I worry that my diagnosis is not complete and something awful has been missed. Sorry I am venting now! Thank goodness for this forum xx

[Finvola in reply to Vony]

Vony, I hope you are feeling a bit better today - your experience in AF sounds dreadful. Things are not helped by feeling that your diagnosis is shaky and if I felt like that, I would seek a second opinion as quickly as I could. I attend the same hospital as you and I have been so impressed with Dr Conor McCann who joined the EP team a couple of years ago.

Is it worth thinking about a private appointment to urgently assess the current situation and devise a plan of action? I don't know if the EP's share the same secretary, but if so, she might be the starting point for you in getting that second opinion.

[Vony]

That is horrendous and I can relate to this and not being safe to walk around. During these episodes your entire focus has to be on not fainting. I hate it. I wish I could just go back to annoying AF which lasted hours but none of this persistent presyncope during episodes. I wish you well. I cannot take meds as they caused me to have prolonged QT.

[Vony]

I just want to sincerely thank you all for your answers and support. I haven't felt as upset as I did last night in a very long time and this forum was a complete blessing to me last night and today. Will let you all know what EP recommends. Although I am not glad anyone else has similar symptoms it takes away the loneliness and fear having people who understand and offer solidarity. Thank you again xxx