Hello fellow sufferers

[Denise-]

I tend to get irregular heart rhythm every 2 months lasting 5/6 hours and then have rapid heart beat and anxiety for upto 24 hrs, despite hospital visits all I get is more medication now on 8 pills a day, so pleased to find this site as no one seems to understand how scary it is

[Rellim296]

Hello Denise and welcome - I don't quite know why no one has replied to you.

I think many of us have started our AF journey with events like you describe, and yes, it does seem very scary, and we know what it's like. It gets better with experience as we learn how to cope when it happens and it will become less frightening. Usually tests like a 48 hour ECG and an echocardiogram will show up peculiarities if any are occurring. You should eventually get referred to a cardiologist and then to a heart rhythm specialist although medication in the meantime will help to keep things under control.

There's a wealth of information available within the forum so do ask if you have questions.

[gwyn53 in reply to Rellim296]

Hi.

Glad you too found this site.

Always good advice.

Friendly and very helpful.

I have found out more about this condition from here than from the drs or hospital.

Take care.

[Denise- in reply to gwyn53]

Yes I am overwhelmed by the support and good advice

[Denise- in reply to Rellim296]

Thankyou so pleased I found this site after 4 years of suffering will have list of requests when I see the cardiologist again in September

[Rellim296 in reply to Denise-]

We are a very mixed bunch and between us we know a great deal about living with AF. We have a few noble and knowledgeable volunteers, and the rest of us chip in with a range of experiences and views. You will find all sorts of useful information within the forum.

[Denise- in reply to Rellim296]

That makes me feel better already so hard to explain to friends and family, cheers

[Hidden]

Hi Denise, everyone on here was a newbie once, and without doubt everyone one of us felt the same fear and dread that you are feeling now. I personally found that once my medication was stabilised I started to feel much better. Still have bad days but the good ones help me through them. Not sure how true this is but I was told by another non related medical professional that you could self refer to an arrhythmia nurse at the hospital. I didn't try because I soon after realised that I was actually managing o k. Worth a phone call to find out. Otherwise ask your g p to refer you. Think you sometimes have to shout a bit louder to be heard, don't suffer in silence! My local G P is brilliant, unfortunately not all are the same. Take care hope you feel better soon.

[Denise- in reply to Hidden]

Thankyou for that I will give it a go, 24 years in NHS so I should be able to get an appointment

[Tessybear]

I understand how scary it is for you. Try not to worry, as it only makes things worse! I think it is really important that you get to know and understand your condition- knowledge is power. Have you seen a heart rhythm specialist or cardiologist? If not I would request this via your GP. In my own experience , I was given a load of medication to control my AF when I went to A&E with my first ever episode , and was really just left to get on with it.It was only when I went to see my GP and insisted I wanted to see a consultant cardiologist who then referred me to a heart rhythm specialist that I got the help and support I needed. I am so glad I did this, as I am now feeling so much more in control and well again. It takes time, but you'll get there!

Keep in touch via this forum. It has been invaluable to me for advice and support.

[Denise- in reply to Tessybear]

Thankyou for your support I had appointment in April with a cardiologist, next one due September so I will ask when I go

[PeterWh in reply to Denise-]

I suggest you phone cardiologists's secretary now and get the ball rolling since if you see him in September it could be 2017 before you see an EP. The cardiologist can do the referral without seeing you (that happened to me with referral to heart valve consultant).

Alternatively if you can afford it you could see an EP privately for the first time.

[PeterWh]

Denise. Just get your GP to refer you straight to an electrophysiologist (EP) who is the specialist in arrythmia. Look on the main AFA website for the list all heart rthythm professionals and then filter by those who perform ablations. That does not mean they wil do one!!!! If you can afford it see an EP privately for the first time which wil cost circa £250 and possibly £0 to circa £250 for tests. You can then switch to the NHS.

[Denise- in reply to PeterWh]

Thankyou I will.

[PeterWh]

Also look at the main AFA website and in particular the booklets and fact sheets.

[Hidden]

Repeating what has been said, get a referral from your GP to see an EP. They are the specialists, or are you already under one? I got desperate a few years back when my arrhythmia changed, and paid £150 for a private appointment which my GP gave me a referral for. He then did tests and came up with a programme of treatment, which worked.

Hope you get it sorted and keep posting to let us know.

Koll

[Denise- in reply to Hidden]

Thankyou Koll I am seeing a cardiologist so will ask to see an EP or go private it's 4 years and I have just about had enough

[PeterWh in reply to Denise-]

I don't know where in the UK you are but I suggest that you do your research on EPs (you may have to travel) and find out one that you are happy with. Don't be surprised if Cardiologist suggests not seeing one as quite a few do not ......... the EP's specialisms.

[Denise- in reply to PeterWh]

Thanks for the extra information will look into it

[buddje]

Hi Denise

try not to be scared. There are more and more sufferers. Not sure what the Dept health doing . They need to get to grips with it.

Also the social implications not good. I was off work for the biggest part of 2 years trying to get a diagnosis and then the correct medication. Has huge financial implications so try to find an Electrophysiologist as soon as poss.

[Denise- in reply to buddje]

Thanks buddge will do

[PeterWh in reply to buddje]

Denise / Budgie.

It is not just the diagnosis that can be the delays but also the monitoring over a period of time and tests that can have implications. For the first 10 weeks I was private since although I had been made redundant a month before the medical cover ran until the renewal. In that time had ECGs, echo and cardioversion. Then switched to NHS and had ablation 4 months later. Unfortunately only lasted in NSR less than 72 hours. Saw EP a month later and he said I could go straight back on waiting list (I agreed) however he wanted me to see heart valve specialist because of those problems. Saw 6 weeks later but they wanted a monitoring and investigation and analysis period which has taken a year. In the meantime EP would not do 2nd ablation (which I accept). In that year I have deteoriated but hopefully path forward will be determined in next 2 months.

[Denise- in reply to PeterWh]

Oh dear, hope you get sorted soon, I know medication and tests take time, as you say in that time sometimes we deteriorate

[gwyn53]

Yes it

Changes in pills. People have advised me more than the Drs and Arrhythmia nurses ever have.

I'm so grateful to be able to ask and get advice. Amazing.

They also let me moan,eorry and T hey help so much especially when it first starts.

Thank goodness for it.😀

[Denise- in reply to gwyn53]

Can't believe so many people have bothered to reply, it's a great comfort

[Lizie-Loo2013]

Have only recently been diagnosed with AF, but must admit it's the strangest scary thing. It arrived unannounced and has turned my life upside down!

It's the after effects that distress me the most. The faint light headed feeling. And exhaustion for the next 24 hours!

[Denise- in reply to Lizie-Loo2013]

Yes exactly. After the trauma of your heart bouncing around your left feeling faint, tired and generally unwell. It's comforting to know we're not alone, so glad found this site because we all know how it feels. Take care

[Sue1955 in reply to Lizie-Loo2013]

Hi Lizzie like you the after effects are worrying I always feel like you describe for 24 -48 hrs before I feel normal again

[Lizie-Loo2013 in reply to Sue1955]

Hello Sue.

Yes , I dread the 24 hours after an attack. Feel so dizzy, sick and completely drained. Have found the only way to deal with it is to given in - keep warm, am always cold after an attack, try and relax and wait for my heart to settle. I try and concentrate completely on reading a book. Distraction action!!

[Sue1955 in reply to Lizie-Loo2013]

Me too on all counts reassuring to hear someone describe exactly how I feel oh and I resort to book too lol

[Rich3]

Hi Denise, I got AF every 3 months or so for some years, it scared me a lot at first but just became an unwelcome visitor in the end, but it never did any perminant damage, just had an ablation, in recovery at the moment hopefully that's sorted it, so there is all sorts of help out there.

[Denise- in reply to Rich3]

Hope you are ok

[Rich3 in reply to Denise-]

First week after ablation had 2 attacks which put me in A+E, nothing since, op was May 23rd, consultant said it's normal to get attacks during recovery, feel OK in myself, getting back to normal.

[Denise- in reply to Rich3]

Light at the end of tunnel, hope you continue to improve

[Rich3 in reply to Denise-]

Thanks for that, hope things improve for you also.

[captainKFF in reply to Rich3]

Hi Rich3, did you decide to get the ablations because the episodes became more frequent and the afib progressed ? appreciate the feed back.

[Rich3 in reply to captainKFF]

They put me on Flecainide as "Pill in the Pocket" which I took during an attack last Nov after a few hours the attack got much worse, the consultant put this down to a reaction to the drug, the referal for an ablation followed on from there.

[Denise-]

Hope yours has worked many thanks

[Denise-]

Mine happen during the night I wake to thudding in my chest. Clammy and feel sick also my jaw aches. This lasts 4/5 hours followed by rapid heart and pulse around 100 normally 44, left me anxious and palpitations for another 24 hrs, my problem is happens weekends, but 12 months ago went to gp 2 days later and he called an ambulance as ecg was wild. Happens every couple of months, so scary isn't it, with heart problems in my family I was particularly worried

[PeterWh]

I note that you are in the USA.

Here in England we no longer have to have two failed drug regimes. If they feel it is appropriate an EP can decide to go straight to ablation (obviously the patient has to agree).

[Denise-]

Yes it is low, I think it dropped around the same time as the af started increases in beta blockers don't help

[Sue1955]

Yes I'm grateful mine is paroxsymal, as to have all the time would be awful not to mention scary

[Solara]

Hi Denise,

Know exactly what you mean. I have been diagnosed with Paroxysmal AF and I get it most days lasting anything from a few minutes to couple of hours. You are quite right, for anybody that hasn't experienced it, it is really scary, and you never get used to it. Wish I could just tell what is going on inside me.