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Hello. Rushed to a and e last week with AF. Feeling very scared and confused....

Stormfly profile image
16 Replies

I am 40, female, married with 2 children.

Last Thursday in the early hours I woke up and - this is going to sound dramatic - thought I was having a heart attack.

I woke my husbands and he called the paramedics and I was blue lighted to hospital. I don't think I have ver been so scared. I didn't think I would see my children (aged 4 and 9) again.

I had a beta blocker, warfarin and was monitored overnight on the CCU.

I was discharged the next day and am awaiting appts for an echo and 24 hour monitor.

I have done some research on AF since - I admit I am trying not to look into it too deeply as I don't want to scare myself! - and a couple of things are really bothering me.

I was dx with ME 16 years ago. The usual...chronic infection, fatigue and feeling faint.

I now see that these are all symptoms of AF too!

I had an ECG when I was pregnant with my eldest child ( 10 years ago) as I was having palpitations but they said it was fine.

I also an ECG in march as I had a very fast heart rate (140) after having the flu but the gp said again it was fine.

Last week was my first (and hopefully last!) attack.

I still feel quite unwell a week later, however. Very tired and my neck - where the resus doc tried carotid massage - is very very sore.

Saw my gp this morning as I have a nasty throat virus at the moment and she didn't seem too concerned and felt my stroke risk was very low.

I guess my questions are;

Am I likely to get another attack?

And if I do will I have to have heart surgery?

Could I have been suffering from AF for all these years!?

Thank you of you have read this far and understood my waffling!

X

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Stormfly profile image
Stormfly

Oh, I forgot!

They said I had low potassium so I had to drink a vile medicine and my glucose was higher than normal.

I also suffer with GERD if that is relevant?

Thanks

Beancounter profile image
BeancounterVolunteer

Hi Stormfly and welcome to the forum.

Firstly no it does not sound dramatic, that's exactly what most of us went through I was diagnosed after calling out the paramedics to a heart attack, and I honestly thought that was the end.

Couple of things, that's the only attack you are aware of?, have they kept you on warfarin?

OK let's try and answer your questions

Are you likely to have another attack?.

Really cannot answer that, but certainly having had one diagnosed, then another is more likely than for the "man in the street" But some people only ever get one attack, for others it's the start of regular attacks.

If you do will you have to have heart surgery?

I suspect the answer to this is no in that you are thinking about open heart, ribcage pulled back etc Hardly ever used for A Fib. First, if they think you should, you will be drug controlled, either rate or rhythm whilst they monitor what happens. Then if it gets worse they may consider either a cardioverison or an ablation, not going into too many details, but suffice to say that both of them are usually "day surgery" you go home in the evening.

Could you have been suffering from A Fib for all these years?

Yes I suppose you could, and now you will probably never know, as unless they carry out an ECG at the time of an attack they find it really hard to diagnose. Similar symptoms to ME, but hopefully they did an ECG before they diagnosed you.

I hope your doctor is referring you to a cardio as soon as possible, one of the things they may do is give you a longer term monitor to wear, as unless you have an attack they can't diagnose so they will want your heart monitored for a longer period. Also talk to your doctor about being anti-coagulated, the biggest risk from A Fib is stroke, so you may have to go on warfarin or similar (which is fine and relatively easy)

Lastly re the GERD, your doctor will need to be careful with prescribing, some of the anti-reflux drugs don't work well with some of the A Fib drugs especially warfarin.

Good luck, ask loads of questions, and write down what you want to ask the doctor, doesn't matter how long that list gets it will help.

Ian

Stormfly profile image
Stormfly

Thank you for your reply. I am not easily scared, but I was last week.

I am due to see the cardio after my appts. My gp seems to think it will be 4-6 weeks.

I had no ECG prior to dx sadly.

The cardio I saw told me that as long as I don't have another attack they won't put me on BBs or ACs....is that normal?

Am worrying now that I should be on a daily dose of aspirin or something?

TheStand profile image
TheStand

Stormfly,

First, welcome to the forum. We wish you didn't need to be her but are glad you found us.

To start off... No it does not SOUND dramatic. It is a dramatic thing, especially to wake and not know what's going on with your heart. We have all been exactly where you are and completely understand the questions and fears that you are having.

You said that you had a beta blocker and warfarin. Did they give you a prescription for them. Are you taking them now? Sorry , I just saw your reply to Ian about the meds....

The hospital gave you those meds for a reason. I would again speak to your GP and discuss those meds because there is a reason to take them.

OK. You stated that you started to read about AF but didn't want to get more afraid. Please believe me when I say that understanding AF will help to get rid of those fears.

I'm going to, As Ian did answer you questions and then pass on some info that I think will help you as you speak to your GP.

"Am I likely to get another attack?" I would honestly say, with the history you gave, having been seen and had Palps and a fast heart rate years ago, that you have had AF for a while. The real problem with AF is that in most, it comes and goes which makes it very hard to diagnose. I like to say that it "hides" every time anyone looks for it. The normal progression for AF is very infrequent attacks which increase in severity and frequency over time. Mine started with 1 or maybe 2 a year and over 10 years had increased to 2 or 3 a week. This is standard. So, although it may never happen again, I would think that it probably will as most have found.

"will I have to have heart surgery?" Ian did a good job answering this and I will only expand a little about the procedure he spoke about.

Cardioversion is a procedure that they use if you AF does not stop on it's own. They either inject drugs (usually Cardizen or another calcium channel blocker) to make the heart go back into rhythm. OR they can use paddles (like they use on someone who's heart has stopped) and try to "shock" the heart back into rhythm. This procedure will not keep it from happening again, but is used to stop an attack.

Abaltion is a minimally invasive procedure where they run wires through the veins into the heart a try to stop what is causing the attacks from happening. I have had this and could go into details (and would if you'd like) as to how this works.

There are other procedures similar that are also used. But as Ian said, they will normally try to control AF with meds first before electing a procedure.

"Could I have been suffering from AF for all these years!? " In my opinion, with what you stated about your past I would say yes. It is very common that someone will go for years, having AF, and not be diagnosed. AFA (the people who run this forum) do pulse checks and will tell you to be seen if you have a "much higher than normal" pulse. Many Drs, not used to or having experience with AF will dismiss it as a temporary issue. Those who deal with AF on a regular basis know this is not so.

Also I'll say that GERD is discussed quite a bit as a possible cause for AF.

OK... Info... I will start by redoing some of what Ian said because it is Very important.

The primary risk of AF is stroke. During an attack the upper chambers of the heart start to "vibrate rapidly" (fibrillate) and go out of sync with the lower chambers. Because of this the heart is not pumping properly and can allow blood to "pool" (become stagnant) in the upper chamber (Atria). During this time that blood can actually clot and when the attack is over and the heart begins to pump properly again, that clot can be pushed out into the blood stream causing a blockage or stroke. That is why they gave you the warfarin. There are a few different anticoagulants that can be used but it is important to be on one of those if there is a risk from stroke. You mentioned aspirin... We talk about that a lot because we see many who are told to take it. I wrote a blog dealing with the use of aspirin or anticoagulants if you would like to read it. afassociation.healthunlocke...

If you don't just let me say that Aspirin is not the right choice.

That is the most important part to talk about.

Now a few positive points...

You will hear "AF won't kill you" and that is basically true. Other than the stroke risk it is more of a pesky problem that is very uncomfortable and symptomatic. If untreated it can cause other heart problems down the road though.

AF can be controlled in most by use of medications. There are 2 basic types:

Rate control meds that will slow the heart rate down and make the AF less severe and give some relief from the symptoms. For most it can not stop the AF from happening but does provide some relief.

Rhythm control meds are designed to "hold" the heart in rhythm which can stop AF from happening. These meds are not 100% effective but for many can cause the AF to happen much less frequently. But some of them have side effects which need to be considered before select to use them.

For some the meds either do not work or do not fit into your lifestyle and then there are the procedure I spoke of above.

Many Specialists with use a combination of both. Reducing the frequency of attacks and also lessening the severity of attacks that do occur.

Speaking on specialists. Most will see a Cardiologist first. Some are very good and have much experience with AF. But some, while experts in standard heart issues have little experience with Heart Rhythm problems. The experts in that are Electrophysiologists (EP). They are cardiologists that have specialized in heart rhythm disorders and normally can better address the problems.

Next... What I had said earlier. Read, study, learn and understand what this is and what can be done for it. Having a good understanding of AF and it's treatments will overcome most of the fear and confusion that comes with AF. The AFA main site has a wealth of information which will make it easier for you to make the right choices in treatment. Here are a few links to help:

atrialfibrillation.org.uk/

stopafib.org

Lastly I would like to help you understand that you WILL get through this.

All of us here have had AF for quite some time and are here just to help those like you who are just starting out. So Please come back and ask if you have any other questions or just need someone to listen. That is what we are here for.

Tim

BobD profile image
BobDVolunteer

Not a lot I can add to what Tim and Ian have said other than to stress that ablation and cardioversion etc are not surgery. Rather they are procedures. They do not take place in an operating theatre but a catheter laboratory and as has been said are minimally invasive.

I will add my view that knowledge is power and any reading you can do will help you to understand the condition and again I never call it an illness. AFA main website has loads of downloadable fact sheets on just about every aspect of AF and its treatment and I commend them to you.

Finally ask anything here and we will try to answer and remember we have all been there!

BobD

Stormfly profile image
Stormfly

Wow!

Such helpful replies....thank you!

I felt such a fool in the ambulance, but I was terrified. I asked the paramedic outright if I was having a heart attack as if I was I needed to go back inside and say goodbye to my two children :(

At one point I looked at the heart monitor and it showed my heart rate was 270....I didn't look again!

I have been spending the time since trying to minimise my fear and tell myself I am being silly....but....

I have had frequent periods of ill health for nearly 20 years now. Strange symptoms that no gp ever really put a name to. I think ME was dx because they simply didn't know what else it could be.

I have another appt with the gp on Monday (due to a virus i have at the moment) and will ask about meds....although she told me my stroke risk was minimal due to my age and the fact I am female (which completely contradicts the info on this site!)

The cardio who discharged me told me if I had another attack I was a "prime candidate" for ablation which scared me a bit if I am honest.

Thank you again for your help and advice x

TheStand profile image
TheStand

Stormfly,

First, You Are Welcome. That is why we are here.

Wow... 270 is quite high but realize that those heart monitors can really be off when dealing with AF because they try to average the rate and because your heart rate is irregular it can be way off at times.

I think I remember the same question in my mind 13+ years ago. Do I need to say goodbye to my kids because I thought I was going to die.

Your stroke risk could very well be minimal due to your age. Try out AFAs calculator here: preventaf-strokecrisis....

Although your Cardiologst could take additional things into consideration and could think the risk is higher. And you are correct about being female. They have actually added that to the test because the risk could be higher.

It sounds like you may have an experienced Cardiologist. Many are now using Ablation as a first line treatment and will use meds in the temporary time before the procedure can be done. If you have any questions as I said you can ask me by message or just input your question the same way you started this one. There are quite a few of us here that have had an ablation recently and would be happy to answer any question you have.

Tim

gardenome profile image
gardenome in reply toTheStand

Hi Tim I believe you had an ablation a few weeks ago and when you last mentioned it on here you were doing really well. I have an appointment on Friday to discuss having an ablation and would be very interested to hear of your progress nd hope all is going well

penny

TheStand profile image
TheStand

Sorry I forgot to add one idea that I have always used when considering an anticoagulant....

"You can always stop using the anticoagulant if not needed, BUT You can't UNDO a stroke if it was!"

That was advise that was given to me when I asked about it long ago.

Tim

Stormfly profile image
Stormfly

Well, I guess my first question is...is it as dreadful as it sounds!?

Because the thought of being conscious whilst wires are threaded through my veins to my heart.....I have to tell you that makes me come over a bit odd :)

I am not a wimp (I don't think) I have had 2 children with no pain relief but I find the idea of being awake during such a proceedure pretty horrifying.

I think those of you who have had it done are very brave!

The cardio I saw used the words "it's not a walk in the park" to describe the proceedure. I panic somewhat when consultants say that sort of thing.

He did seem quite dismissive though (is that a good thing?) and in fact told me that if he had been on shift he would have discharged me home from resus.

All in all it's been a very strange week....glad I found this site!

TheStand profile image
TheStand in reply toStormfly

No it is not... First except in rare cases you will be completely out. Just a shot into the IV and "GoodNight". And the Dr was right. I would be wrong to say that there is just no risks to it. There are risks in everything that is done. But as far as pain, I can honestly say that the worse pain that I experienced was a back ache from laying on that hospital bed for a whole day. They offered me pain med but I didn't need them because there really was almost no pain.

After the procedure I was told to take it easy for a week, don't lift anything heavy and don't take a bath and if I showered, don't get the area very wet for 3 days.

Yes they are normally pretty dismissive about it. They understand that it can be very scary but they also know that there is normally no immediate risk (other than the stroke risk). The times (3 in 13+ years) that I went to the hospital I was normally released the same day. They stop the attack and let you go. There really isn't very much more that they can do at that time. And unfortunately they are normally too busy to spend time giving you info so that you won't go home scared to death about what just happened.

Here is a link from the AFA site explaining the procedure: atrialfibrillation.org.uk/f...

Again... Don't hesitate to ask away.

Tim

Stormfly profile image
Stormfly

Hmmm....I may ask about an AC on Monday at my appt.

Although its an ENT specialist I am seeing!

Stormfly profile image
Stormfly

Thank you so much Tim.

Feel slightly less panicky tonight.

Will check out those links you posted too.

X

meadfoot profile image
meadfoot

Hello Stormfly.

I am so sorry you are feeling so afraid and completely understand how you feel. I have been in exactly the same situation as you. I too feared I was having a heart attack (could not believe I could feel so ill and it not be about to finish me). I too said goodbye to my husband and daughter. It is so hard to gain confidence again but as other forum members have said there is so much help out there medically and, somehow, you do get back on track even though you cant see it now.

I agree with what other forum members have said in their posts so no need to repeat it.

Like you I was scared to look too much into the condition for fear of what I may find. However over time I felt research, asking questions and arming myself with facts did help but I took a long time to get to that position. .

You are new to this and it is not easy to cope with. Be kind to yourself and take it easy. l feel fear too and get in a panic when I have associated symptoms. Ask for help and support wherever and whenever you feel you need it both medically and emotionally.

The AFA and this forum has helped me as has my NHS hospital trust who runs AF support groups, my GP who is a marvel and obviously my Cardiac Consultant - there are some amazing people out there.

I also have GERD and absolutely know that impacts on my AF episodes, as does stress.

Thinking of you, take care, you will get back on track - really you will.

Regards

Dee

Stormfly profile image
Stormfly

Thank you dee x

Keith1973 profile image
Keith1973

Keith1973 0 minutes agoDelete

This is exactly how i was diagnosed it is a bit harrowing, but once you get in to the process, get specialist help and they diagnose the best way forwards for you things will bottom out. It is very very frightening when this happens, and the knock on to your family can be huge. But it isnt the end of the world, yes you will have this condition for life, or the threat of it returning if you have an ablation. But it is manageable, and i have to say it gave me the thump i needed to change my lifestyle, look at what i did and how i did it, and was a major turning point in my life.

I continue to operate as normal, mange the afib bouts and take meds, you will too, your age is on your side and look at this happening for a reason. I did, i took it as a second chance to make real lifestyle changes, hopefully you will too

It aint all bad !

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