Takes my breath away!: I am confused... - Atrial Fibrillati...

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Takes my breath away!

nadgood profile image
28 Replies

I am confused by my symptoms and just wanted to see if anyone out there has experienced anything similar. I don't experience the sensations as a missed beat as such but although there are variations of a theme in general...... I can take one or several involuntary intakes of breath. This normally happens when stopping or relaxing especially in the evening. Sometimes there is no other sensation or bad feeling associated with it and other times a heat or/and nausea comes over me and a general feeling of not wellness.

I have just been diagnosed by a cardiologist with Atrial ectopic that leads to atrial fibrillation. I had an R test fitted for a week and also an ECG. I was apparently in Afib when I had the ECG but I had no idea and no symptoms!

Confused

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nadgood
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28 Replies
meadfoot profile image
meadfoot

I have the same symptoms these past five weeks post surgery. I don't have a clue what they are unless a form of ectopics. I intend to mention to my EP at my next cardiac review regarding my arrhythmia. I will be interested, as you, in forum members replies.

CDreamer profile image
CDreamer in reply tomeadfoot

I think they are quite common symptoms of ‘something not right’ ‘sense of doom’ etc. Involuntary intake, feeling hot or cold most likely be Autonomic response associates with the ectopics. I probably have all of those response most days, especially when I am under the weather as with cold etc. I am never sure what condition causes it but I know that many people with all sorts of chronic conditions report this type of sensation.

meadfoot profile image
meadfoot in reply toCDreamer

That's interesting thank you. I have been convinced for years that the autonomic nervous system in my case at any rate is a catalyst for all sorts of unusual responses.

CDreamer profile image
CDreamer in reply tomeadfoot

Definately - the more I study about the more amazing I realise it is - and often the most ignored system within the body.

Ottis profile image
Ottis in reply toCDreamer

What are ectopic are they palpations

CDreamer profile image
CDreamer in reply toOttis

Palpitations simply describe a sensation. Af & ectopic will cause palpitation sensations.

Ectopic are skipped heart beat, beats out of time. Normally thought to be benign they none the less can make you feel pretty horrible if they are numerous or come in pairs or triples. Many people have ectopics as a precursor to AF , had one of those days myself today. Felt like AF but ECG just showed occasional ectopic. I get both atria & ventricle ectopics.

falah12345 profile image
falah12345 in reply toCDreamer

Hi C Dream

I hope you are well

I was reading one of your posts earlier on ,you mentioned in this particular post that you had A Fib and Pots (

so far this is the only case other than my self I come cross with the two coditions

I hope you dont mind to tell me how did u get on or if u had the ablation done or not?

My E P physiologist told me ablation is relatively contraindicated in pots! but i had 4 a fib episodes since dec 2017 my pots started 2 wks after my First a fib episode but responding to 2.5 bisoprolol!

thank you very much

CDreamer profile image
CDreamer in reply tofalah12345

I had 2 ablations and yes I found out AFTER the events they are contraindicated for POTS - but funnily enough I am no longer that symptomatic with POTS - if anything my HR is now too low. But I do have Dysautonomia with Autoimmune. My EP believes that the ablations helped the POTS and low BP but I also think that another med I take for the Autoimmune has to some extent helped also.

We are such complex beings that the trouble is that you treat one thing and upset the balance of another. I am now travelling down the Functional Medicine route as much as possible but I really cannot exist without 3 meds - Apixaban (anticoagulant), Mycophenolate mofetil) immune suppressants) Pyridostigamine bromide - cholinesterase - which is also used as a treatment for POTS.

My heart stopped during the 2nd ablation but if it’s going to happen I was in the right place and everything soon righted itself. I have to say It also gave me 3 years free of AF but did exacerbate the Autoimmune & Dysautonomia.

There are very few doctors who seem to really know about POTS with AF but there have been about 4-5 people on this forum with both.

in reply toCDreamer

Excuse my ignorance but what is POTS?

CDreamer profile image
CDreamer in reply to

Postural orthostatic tachycardia syndrome (POTS) is a condition in which a change from lying to standing causes an abnormally large increase in heart rate.

in reply toCDreamer

Thanks cdreamer. Twice when I reached awkwardly for something I started a full blown AF episode. Would you call that POTS?

CDreamer profile image
CDreamer in reply to

No - read the description of POTS below.

heartrhythmalliance.org/sta...

Ottis profile image
Ottis in reply toCDreamer

What do you do when they come on

Ottis profile image
Ottis in reply toOttis

I take bisoprolol digoxin and ameoderone

CDreamer profile image
CDreamer in reply toOttis

Deep, slow breathing and ignore them or distract or if too symptomatic (because I have other conditions) sleep! I don’t take any meds, they always make me a lot worse

nadgood profile image
nadgood in reply toCDreamer

Thanks for reply. I am Not stressed over this issue I just need to understand my body. ( didn’t listen in my science class all those years ago 🙈) thank you taking the time to explaining this is quite a common response to ectopics.

nadgood profile image
nadgood in reply tomeadfoot

Appreciate the response. I have just started on Bisoprolol 2.5 x1

Let’s see how that goes.

CDreamer profile image
CDreamer

Hi & welcome.

Many people walk around in AF and don’t know about it whilst others feel very strong palpitations.

A diagnosis of AF can leave one feeling confused and upset and scared but I have had AF on and off (off for 3 years after ablations) and I am still here.

Knowledge is power so I would suggest you go to the AFA website and read and learn and then come ask any questions you have as we have a very knowledgeable community who will help you adjust and answer questions you may have.

Very best wishes CD

pottypete1 profile image
pottypete1

Yes this exactly how my ectopic beats manifest themselves. In addition a sensation of nausea. I get a few ever day and it takes my breath away every time. I have had ecoptics that are the precursor for AF and I know that once when in the Cath Lab having an ablation my notes stated that I had spontenious AF that started from an Ecopic beat.

Having said that I have ectopic beats with these symptoms every day and I have had only had one episode of AF in the past year and that was last Tuesday.

Hopefully, whilst very uncomfortable each time, your doctors will be able to make things better for you.

Pete

Ottis profile image
Ottis in reply topottypete1

I seem to get them more when I come home from work and I can’t lie down on back at night it’s propped up on right side or it starts again

CDreamer profile image
CDreamer in reply toOttis

That’s definately vagal.

nadgood profile image
nadgood in reply topottypete1

It’s strange because the involuntary intake of breath doesn’t cause any distress but it used to just happen at night when relaxing and my husband and I would laugh about it but now it happens during the day and I prefer not to talk about my health to people so I just laugh it off.

It always happens when using a remote control for the telly! Not specifically me using it anybody near me!

BG2017 profile image
BG2017

Hi Nadgood,

I experience involuntary gasps for breath, I also have ectopics but I am not sure if mine is to do with low ferritin (iron store) levels that I am taking oral iron for and not associated with the ectopics. Reading the other posts I may have been making the wrong assumptions as it doesn’t seem to be uncommon.

It always amazes me how much we can learn through the experiences of others!

CDreamer profile image
CDreamer

Please use the PM facility on this site. Not a good idea to publish your email on an open access site.

I’ll pm you later today.

falah12345 profile image
falah12345 in reply toCDreamer

Many thx for the reply

Forgive my ignorance !

This is the first time for me to participate in any forum!

Looking forward to hear from you

CDreamer profile image
CDreamer in reply tofalah12345

No problem - but I would delete that post. Just click on the small arrow marked More next to the reply tab and you will see an option to edit, delete or report.

If you ever have an abusive or distressing reply to a post or anything else that concerns you then you can report to the moderators who may then take action.

We don’t often get trolls or abuse and it is quickly dealt with but keeping safet online is knowing what and what not to do.

And we are here to help.

falah12345 profile image
falah12345 in reply toCDreamer

Thx again for the advice very much appreciated.

the link is useful however ,I am disperate to know more about the best treatment when you have the Afib and the pots other than the ablation !

CDreamer profile image
CDreamer

You may find this site useful, if you don’t already know it..... heartrhythmalliance.org/sta...

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