AF Association
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Catheter Ablation at 28 years old

Hi all,

After suffering with an irregular heart for 10 years, I had been turned away from my GP several times, being made to feel like I was a fraud or told I was just suffering with anxiety or stress (silly hysterical women). After a particularly bad bout in October last year, I was 'diagnosed' with paroxysmal atrial fibrillation (PAF) and admitted to hospital with a heart rate of about 210bpm.

I've tried all the drugs the NHS has offered to me, but I am intolerant to them. One Beta blocker made me so tired and drowsy I could not even drive to work...

I have been back to hospital a few times, most recently on Friday. I was offered a cardio-version to shock my heart back to sinus rhythm however I refused as my ablation is due to take place on Wednesday. It has already had such a major impact on my life, I literally cannot afford to take time off of work and so I didn't want to go under general anaesthetic twice in the space of 5 days. I am concerned about the ablation and decided I don't want to be awake for the procedure.

Although I have been living with an irregular heartbeat for a long time, I was ignorant to the risks. Now that I am aware of my PAF I am quite overwhelmed by it all. There are still people around me who simply do not understand, they seem to think I have control over my 'episodes' or I cause them through anxiety or allowing myself to become stressed. It is really tough to explain to people.

I am lucky to have a supportive partner who has been living it all with me, he helps to keep me positive.

I am keen to hear about other peoples experiences with AF and any advice from fellow sufferers.

Thanks for reading,

Best wishes

Gemma

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Gemma I am so sorry to read of the "treatment" you have been experiencing but sadly this is all too common. Many ladies get fobbed off as you have and there is some evidence to suggest that this may not be rare.

Having "only" had AF for about 20 years and me an old git these days I can not but hope that your ablation is a success. I had three before mine was fully sorted nine years ago and know how lucky I have been . What I would urge you is to understand that you need A LOT of rest afterwards and should bank on AT LEAST two weeks off work and be prepared to feel weak and under the weather for a few more after that. It takes between three and six months for full recovery but they never tell you that! Being young as you are doubtless you may not be so bad but you will not suddenly be cured the next day and may well have a few episodes while the poor old heart recovers from it's ordeal.

There is a lot of information available on AF Association main website.

In the mean time get ready for that ablation.. Make sure that you have a bag you can keep close with things like sports water bottle, lip salve and mobile phone as you will have to lay flat for maybe four hours afterwards and you can get quite dry.

All the best

Bob

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Thanks Bob.

I'm pretty much all set now I think.

Just need to check my overnight/hospital bag to make sure I have everything I need.

I am so glad I found this site, the support has been amazing :)

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This makes me sad as well! My hubby gets dizzy now and then when slipping in and out of afib. Since he drives semi for a living this obviously isn't good. The drs say the dizziness isn't AFib related and act like he's making it up. So frustrating.

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I don't know how the Dr can say the dizziness is not related, my my last A&E visit I drifted in and out of conciseness every minute or so for 6 hours

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😨

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''Quote=Gemma Although I have been living with an irregular heartbeat for a long time, I was ignorant to the risks. Now that I am aware of my PAF I am quite overwhelmed by it all. There are still people around me who simply do not understand, they seem to think I have control over my 'episodes' or I cause them through anxiety or allowing myself to become stressed. It is really tough to explain to people''

Hi Gemma :-) I think many of us share that experience, tell some people you have an irregular heart beat and they have an ' is that all ' attitude and that seems to apply to some doctors too.

Thank goodness for this site where people understand about our unpleasant condition and offer support.

Good luck with the ablation, there are many success stories on here.

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Thanks doodle!

the support here is amazing, just what I needed.

It is good to know i am not alone.

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Hi, Gemma and welcome. With an ablation ahead, I don't think you could do better than to read the post by Japaholic headed '2 year post ablation check in....' Some of us shared his story two years ago and perhaps you will let us know how you get on.

In my view, ablation gives us a way forward in the battle with AF and I found the technical excellence that is evident when you get there gives one confidence. We all feel full of trepidation beforehand. The staff are very helpful and I've found the standard of nursing very high. Bob's tip about a box or bag ready with all the things you are likely to need for a couple of hours after is worth noting.

All the best for Wednesday!

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I spent more of yesterday evening reading through Japaholics posts.

Thanks for the recommendation :)

Somehow, knowing that there is a community here makes it easier... I feel better prepared for tomorrow!

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I hope it goes smoothly for you!

From memory Japaholic's ablation differed in several ways from what is the norm in the UK but his posts subsequently have been a tonic.

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Hi Gemma, I have been reading posts on this site since last year and have found it so helpful reading people's experiences. This is the first post I've made but it sounded a similar experience. I'm 45yrs old and had irregular beats for over 10yrs and was also told it was anxiety and stress. PAF can be difficult to capture and similarly I had a particularly bad episode which was finally captured on ECG in Sept 2015 and the PAF diagnosis made. Although it was a relief to finally get a diagnosis it was very overwhelming and frightening and I found it difficult to explain to people. I think I downloaded every AF e-book and trawled through countless websites for information/help. I was put on a beta blocker and flecainide and was one of the fortunate people who had very minimal side effects but unfortunately started to get breakthroughs over time and the flecainide dosage had to be increased. I finally had a cryoablation in Jan this year and 6 months on, so far all seems to have worked. I still get the occasional ectopics which I understand are 'normal'but am now off all medication. I would echo what BobD said about having plenty of rest after the procedure. I was incredibly apprehensive about the procedure but the medical team were excellent and very reassuring. My chest felt sore for 3-4 days after and my groin was a little tender where the catheters were inserted and I was very tired..but having read people's experiences understood they were all normal post procedure effects. There are lots of success stories on this site and I feel very grateful to be one of them and hope it in some small way eases your apprehension. I hope not to be in that position but would not hesitate to have a second procedure if needed in the future. Wishing you all the best for your procedure on Wednesday and would be great to hear how you are getting on. Steph

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Thanks Steph.

I will be sure to post an update post op! :)

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Before you destroy heart muscle (Ablation) have them check for Hypothyroidism. Buy some iodine supplements. I've been in AF for 8 years. I refused Ablation. Had two cardio versions first worked for two months. They stopped my heart 4 times the second go round.. didn't work. Burned my chest with that thing. Mine started at age 50. Got misdiagnosed for two years, then blood clot to the Spleen put me in the hospital for a week with the 220 - 250 heart rate. I feel pretty good now, gym every day, vitamins supplements and lots of iodine. I get the liquid iodine online. Hope this helps, hit me up if you have questions.

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Hi,

Thanks for your reply!

I have been tested for this every time I've been to the GP or ER over the last 10 years, but they cannot see anything abnormal. I think the Ablation is my best option at present, Best wishes

Gemma

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Please do not offer medical advice on this forum. None of us are qualified to know the medical history of another.

What works for one person does not work for another.

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Hi Gemma!

Look at my user name: I complained so much about a wonky heartbeat in the early 90's that I was sent to see a specialist who put a monitor on for 24 hours. When I went back for the results he said, 'we can see that it is doing it, but there is nothing wrong with you.' So I put up with it; every so often having to take a day in bed, utterly exhausted, with this feeling of a 'dying salmon thrashing about in my chest'.

Subsequently my GP just shrugged when I kept on about it, so I held my tongue. Eventually when a young nurse was trying to take my BP, she said, 'I cant get a reading; your heart beat is all over the place.' There followed an ECG and a rush to get me on medication; Bisoprolol and warfarin. Four months on, I am feeling better, and can climb the stairs without dying at the top. Oh but I am so tired! I sleep for 2 -3 hours most afternoons.

I hope your treatment works and look forward to hearing about your progress: I think you have to be very patient; there are no quick fixes I fear.

Best

Su

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24yearsandcounting hi Su, what a shocking story ! I have a total dislike of 24 hour monitors. They have almost no chance of recording anything for people like me with PAF. After a bad run I have had no episodes for nearly 4 weeks now so I'm feeling quite chipper.

Regarding your tiredness. It is likely to be the bisoprolol. A different beta blocker might suit you better. Have you considered taking all or half of it in the evening? It would probably be worth having a word with your doctor.

Very best wishes

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Hi, thanks for this: oddly enough I have run out of my Biso 10mg pills and will have to take two of some 5mgs that I was on earlier this summer (until I get to the pharmacy). I shall take your advice and split the dose, night and morning. I do some work and gardening and stuff in the mornings, so I feel I have a right to be tired - but not THAT tired!!.

all the best

su

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Hope you get it sorted :)

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Hi Su,

Thanks for your reply.

I cant believe that its taken so long for you!

I am trying my best to be a patient patient :) but I want so badly to live my life after feeling debilitated for so long.

I couldn't tolerate the Bisoprolol, it made me so weak that all the things I would normally do were impossible. I struggled with stairs and felt driving was unsafe.

I will continue to post on here. Its great to know that there is a community!

Wishing you all the best!

Gemma

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Hi Gemma

I know exactly how you feel

I thought my life was over when I was diagnosed

I had an ablation 10 days ago stayed awake for the procedure and am so glad I had it done I too was intolerant of the drugs

Already I have got some energy back and know this was the right decision for me

Good luck with your procedure stay positive knowing for some it does work first time

I know it's only early days but already feel like a new person

Deb

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Thanks Debbie.

Wish you all the best!

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Hi Gemma, good luck with the operation :o) It can be challenging to gain the understanding of people, medical and otherwise. I'm 52 and as a qualified nurse, knew something was wrong with my heart since my 20s. Almost 10 years ago I finally sought medical help but was discharged from cardiology with the advice to lose weight and not lie on my left side. Even now, with almost permanent AF and an ablation on the cards, it is tricky to explain to family and friends about the random nature of the symptoms. I can't plan anything that involves driving! And when in AF with breathlessness and angina, I still look fine - even the cardiologist says, 'But you look so well' when the monitor is going haywire. My GP describes me as 'stoical' - perhaps I should moan a bit more and family will know how impossible it is to do anything physically when in AF!

Thank goodness for this site where we all understand how it feels!

Warm wishes to you for a successful and speedy recovery :o)

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Thanks Wendy

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"After suffering with an irregular heart for 10 years, I had been turned away from my GP several times, being made to feel like I was a fraud or told I was just suffering with anxiety or stress (silly hysterical women). After a particularly bad bout in October last year, I was 'diagnosed' with paroxysmal atrial fibrillation (PAF) and admitted to hospital with a heart rate of about 210bpm."

Been there, done that, got the T-shirt.

In my case, after they knew I had AF, they carried on denying it anyway. They told me that they had never seen any abnormal ECGs and even that I had never been taken to A&E for 11 months after I was diagnosed, even though the documents to prove it were all in my records.

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:( its so frustrating!

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I had ablation in Nov 2013 and although I had lots of arrhythmias for about 5 months, they gradually settled down and then nothing. I am AF free since then. So it can work first time. Stay positive , be prepared for a bumpy ride and good luck 🍀

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Thanks lallym :)

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Hi Gemma

Just wanted to say good luck with your ablation.

Having waited over a year, I'm due to have my cryoablation on Friday. Anxious/terrified is an understatement but I'm in the middle of an afib episode, which usually last 2-3 days and feeling so unwell at the moment so in a way it can't come soon enough. I too have opted for a ga as im too coward to stay awake for it.

Best wishes for a successful outcome on yours.

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Hello,

Thank you and good luck with yours too.

I couldn't believe it when I had an episode over the weekend (just a few days before the ablation date).

Good luck and let us know the outcome of your procedure :)

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Don't know what language I 've got into, they don't seem to keep me logged in now.

Good luck with the ablation, I was on my own day after and just got on with it, bit sore and very bruised but ......

Hope it works.

Which hospital?

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Bournemouth Hospital... I am sure they have a good reputation :)

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Cryoablation two years ago and no AF since. Also no nasty drugs. Ensure a gradual return to normality after the procedure and maintain a healthy lifestyle to give your heart a chance.

Peter

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Thanks Peter, I am realising now that I may take some time for me to get back to normal.

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Hi Gemma

I was diagnosed with PAF 3 years ago after being rushed to A&E with a pulse rate of 190 bpm and have been through some really bad times with it. I've seen numerous cardiologists and as its paroxysmal in nature I never seem to show an episode of af when im connected to a monitor,

I seem to suffer with loads of side effects ranging from being light headed to tightness in my chest and loads of palpitations, mine seems to be worse when I'm at rest.

I've had all the tests done angiogram, ultra sound etc just to rule out other issues and they all came back clear.

The last electro cardiologist I've seen said an ablation was an option but Im terrified so at the moment I struggle on with the condition.

Currently I take sotilol twice a day and amalodipene once a day they seem to be the only meds I can tolerate.

Some days are good and some are really bad I guess it's the way it goes with PAF.

The trigger for me does seem to be stress and anxiety so I do try to take 5 mins out at work when I feel that things are going crazy, avoid caffeine and drink loads of water that seems to help me.

Hang in there.

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Thanks :)

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Hi gemmaholden--I do hope your ablation goes well next week. Some GPs' attitude to PAF leaves much to be desired. Fortunately, I have been symptom free for the past six months, but an older female friend who has arrhythmia, went to her GP last week, as she wanted a letter of referral for a private consultation with a cardiologist who specialises in heart rhythms. Her doctor took her wrist, felt her pulse and said there was nothing wrong with her heart and refused to refer her. She is going to change her GP and I suggested she try contacting the cardiologist's secretary to make an appointment. It's a sad day when GPs won't facilitate patients seeing specialists privately.

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Its not good is it.

Do you know how it all worked out?

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Good luck with your ablation! I was diagnosed at 32 years old and had my ablation a few months after because of regular episodes - heart rate as high as 232.

I hope everything goes well and wish you all the best :)

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Wow! and thanks I am positive that it will all be well soon :)

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Gemma, by now you may have been 'done', I hope all went well, I'm sure it did or will if you are still waiting. It stuck me that your statement that others simply 'do not understand' was so true with me also, even those so close to me couldn't empathise at all. Please take time to allow healing, being a lot younger than me you will no doubt feel like getting back to it a lot sooner, but give it a couple of weeks before anything 'normal.'

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Hi,

Yes all done :)

I am going to take it as easily as I can over the next couple of weeks

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Hi Gemma, I'm just wondering how you are after your ablation?

Jean

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Hello,

I am positive that it went well but struggling more than i expected.

I have posted an update :)

Best wishes

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Hi Gemma - I too have been wondering how you got on. As you were having your ablation 2 days prior to me. I can't seem to find your update?

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healthunlocked.com/afassoci...

hmmm try the above link :)

How did you get on Surreyhunni?

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Thank you for asking Gemma - Complications with mine and could only do 3 of the 4 veins. Also a restriction down my throat and they had trouble getting the tube down and the TOE. I've been very breathless since the procedure and wheezy. I also went into afib for a day and a half last week. Still tired and unable to do much but mainly because I get so out of breath just walking to the bathroom. Stairs are a once a day necessity. Hoping it will all improve soon.

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Yeah, I can give you some advice.....Go get the damn thing fixed!

Ablation is a major deal and you will be short of breath for a while, but in the end you will have a normal life again. compare that to your life now.

I am going in for my last checkup tomorrow after an ablation. 71 years old and free as a bird. Nothing to be scared of.

God bless and keep you, and give you courage......Joe

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Hello Gemma

I completely understand your worries.

I am/was a seafarer and all my life had an irregular heartbeat.

I had medicals every year and was passed fit every time to work as captain on oiltankers.

About 3 years ago I started to get Dizzy spells which were getting worse as such that sometimes on a daily base fainted and after a few ECG,s monitoring for 5 days not 1 it appeared that my heart stopped for 7sec and restarted .

The cardiologist suggested a Pacemaker as well as other options.. 6 weeks later they implanted a single wire PM due o the electrical fault at certain times blood was not pumped to the brain.

I have never looked back!!! although scared and apprehensive at first and the procedure was practically painless done in 1 afternoon.

So please dont worry, there is help for sure, and suffering now with severe degenerative Osteo Arthiritis which I am in constant pain and on morphine while I dont even notice the pacemaker.

Hope you are feeling better soon..take care

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