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[Kellyjelly]

Hi everyone, my journey with dodgy rhythm problems started when I was 17 and started experiencing prolonged episodes of svt usually coinciding with menstruation and ovulation. I was told by various doctors that it was anxiety/ panic attacks as every test they did came back normal. i felt really uncomfortable with this explanation but sufficiently ashamed at my lack of emotional strength that i just accepted what they said and kept it a secret feeling embarrassed that my inability to cope with life was causing such harrowing symptoms and totally powerless to stop this as I didn't feel particularly anxious or panic stricken unless my heart was beating at 240 bpm!!!!!

At the age if 35 I had my first episode of afib, I was scared enough to call an ambulance and at last they caught the problem on a tracing. I was converted after 18 hours with an IV of flecainide and sent home with a prescription for 50mg twice a day. I have been taking them ever since apart from last year when I thought I might be fixed and gradually stopped taking them only to end up in a&e last January with a 9 hour episode that converted in it's own. I have no contact with a cardiologist and I'm never checked over by my doctor and feel really lost. Since restarting the flecainide last year it's just not as effective at controlling all the dodgy breakthrough stuff, extra beats etc. the road to diagnosis was so long and so damaging that even though I know I need to take control and be more assertive with all this I just don't know where to start. Sorry for the enormous post I am looking for a bit if advice on what to do next. I live in Lincolnshire and was supposed to be under the care if Scunthorpe but they never contacted me after my hospital admission last year. Is that normal? Do I just keep taking these tablets forever? Is it normal for them not to work as well after having a break from them?

Thank you in advance to anyone that gas made if to the end of thus rather long ramble!

Kelly 😊

[jedimasterlincoln]

Hi Kelly,

I would head back to the GP and push for a referral to cardiology. You don't appear to have any sort of plan, and you should really have contact with a cardiologist even if it's just to say " Carry on you're doing the right thing"

[Kellyjelly in reply to jedimasterlincoln]

Thank you for replying, I've never used a forum before and wasn't sure anyone would reply!!!

Should I ask to see a cardiologist or an electro physiologist or does the cardiologist do that? I have joined The AFA this week and they have sent some Helpful leaflets that have made me realise that I'm not really dealing with this properly and I need more monitoring than I've had. you are right I have no plan in place but feel like I need to finally take control of all this. I feel a bit lost in the system and years of not being believed have really made it hard to be confident in my approach to it all. I'm looking for a support group too but can't find anything local, does anyone know of any? I don't mind travelling.

Thanks again.

[BobD Volunteer]

Hi Kelly and welcome, So sorry that your story is such a comedy of errors and lost opportunities but sadly not uncommon..

My first suggestion is to go to AF association website and read as much as you can there as knowledge is power and one really need to drive your own treatment as few GPs have any idea. The next is to see a specialists. NICE quality statement is that you should see a specialist in arrhythmia within four weeks of a failed attempt at control. This could be a specialists arrhythmia nurse or cardiolgist. My advice would be to look up the list of arrhythmia specialist doctors (AF Association website), find one in your area and then demand that your doctor refers you. Sounds like you may expect a fight but right is on your side so be assertive. If all else fails a private appointment will set you back about £250 but get you into the system after which NHS can pick up the tab.

Sadly AF is generally a progressive condition which will get worse unless you get it controlled properly so do push for the specialist. known as an EP or electrophysiologist, a cardiolgist with special interest in rhythm disorders. The electricians to the normal cardiologists plumber.

Good luck an keep asking here.

Bob

[Kellyjelly in reply to BobD]

Thank you so much Bobd, I joined AFA last week and that has prompted me into action. I have realised that my approach and relationship with my afib is based on shame and denial and fear after years of not being believed. I suppose I've been quite happy to scuttle off with my tablets and not push for support or bother anyone but I'm struggling to cope as it seems to be getting worse. I'm sick of feeling ashamed and want to take control and learn to live with this with confidence.

[Hidden]

Dong be ashamed j was told mine was streesz for years getting my own back now ha ba

[absolutepatsy]

Hi Kelly

I was diagnosed by my GP during an episode of AF and put on bisoprolol twice daily and basically left to get on with it. The next episode I had scared me enough to call an ambulance and the paramedic traced my heart and gave me the tracing as proof that I was in fact in AF, he also told me to ring for an ambulance every time it happened, keeping me in the system and getting me seen immediately I entered hospital. Since then it happened half a dozen times more and each time I called the ambulance as directed. Eventually I was admitted to the cardiology ward as the AF episode wouldn't revert to normal, my drugs were changed and I am now under the care of the cardiologist. My next step is to try and get a referral to see an electrophysiologist, my advice is same as BobD, read as much as you can, insist your GP refer you to see the EP, if you have too much resistance from the GP then go to another one. My new GP has been great but admits she can't answer my questions, it needs to be the Cardiologist, hopefully electrophysiologist. This Forum is great, keep asking questions and don't feel afraid or down, it gets easier.

regards

[Rellim296]

Hi Kellyjelly! It sounds as if you have coped pretty well so far with little help and plenty of hindrance. It is absolutely normal for your tablets to 'not work' after a while - many of us have found the same as actually the problem has started to get the upper hand. Some proper attention now could make your heart behave much better.

Find an EP near you and follow Bob's good advice!

In the meantime your GP should also be sending you for basic tests (if you haven't had them) and so when you see your him/her, why not make it clear that you mean business by asking to be referred for an echocardiogram (which will show what effect your dodgy rhythm may (or may not) have had on your heart) and an ECG monitor to see how your heart is doing on a daily basis. This can be for 24 hours or 48 hours or 7 days.

These are very standard tests and will help an EP to help you.

If ever you have a 30 second ECG, always ask for a copy of it when it's being done.

Good luck!

[Kellyjelly]

Good morning and thank you all so much for your helpful replies. The last time I had all the tests you mention was last year when I was admitted in afib. They basically said that I had to restart flecainide and they hoped I had learnt my lesson, that I can't do without it and I was silly to wean myself off it. I felt pretty foolish because it had controlled the afib quite well for over 5 years. It's just not as good now that I've restarted it. I've made an appointment to see my doctor and I'm going to ask for a referral to an EP. I am currently reading As much as I can and I am going to use this forum to ask the many random questions that come into my head!😊

Thanks again.

[Rellim296 in reply to Kellyjelly]

Thanks for that. You're moving forwards and there are alternatives to taking flecainide all the time!

[cavendish10]

I too suffered with svt from age 14. No one seemed to understand or offer any treatment. I am rather an anxious person, but sometimes it would happen for no apparent reason. Eventually in my 60's I paid to see a cardiologist who sent me for an angiogram, then to the Brompton for a pressure wire angiogram as I have a lesion in a coronary artery possibly anatomical, Then after two more admissions to A and E with svt was advised to have ablation of pulmonary arteries where it was assumed the rogue electrical impulses were coming from. This seems to have had the desired effect, but has left me with runs of ectopics when over exerting. These are easier to deal with than the former. I am on 2.5 mg Bisoprolol as a maintenance beta blocker. I would advise to pay to see a good cardiologist or electrophysiologist. The following treatment can be on the NHS Hope this helps

[Kellyjelly in reply to cavendish10]

Thank you so much, what a helpful post. It makes me feel sad though to think that you had so many years of dealing with it without any interest or support. I too can be quite anxious but I often wonder which came first, the svt or the anxiety?! Im glad that you finally managed to get to the bottom of why it was happening and have it treated. I am seeing my doctor in April so am writing down all this advice so that I can be prepared. Thanks again 😊