Advice From Overseas

[MeganMN]

I know many of you are in Europe, and wanted to get a different perspective on things. For the back story, I have had SVT (Atrial Tachycardia) since 2021. I had an ablation in May 2021 that was acutely successful. I had Inappropriate Sinus Tachycardia for about six months after, and then had a normal heart rhythm for over a year. In December of 2022, after Covid, I had a return of the SVT/Atrial Tachycardia and also had very frequent PACs. The SVT got worse and worse with no improvement from medications. By Fall of 2023, I had a huge burden of SVT and ectopics. I finally had another successful ablation in May of 2024. They got the SVT, however, the PACs/ectopics were in the left atrium, and they couldn't induce them after sedation.

Since the ablation, the SVT is gone, but I have atrial bigeminy and have again the Inappropriate Sinus Tachycardia. I have over 30,000 ectopics a day (at night I have a 30-50% burden). My EP is trying Propafenone and if that fails, feels like my only option is another ablation.

I know the system in the UK is different and not geared by money or pharmaceuticals. I am not keen on lifetime meds (I am 48). But I also feel like the ablations are turning into a game of whack-a-mole. What are your thoughts coming from a different health system?

My fear is that I end up with a pacemaker eventually. But maybe that happens regardless as my electrical system is obviously whacked out....

[BobD Volunteer]

Firstly I must say how apt your Wack a Mole analogy seems . I'm sure many of us have been through similar experiences. It seems that if a person is prone to arrhythmias then the heart will keep finding new ones every time one is fixed.

A brief history of my own journey here in England started some thirty or more years ago when I discovered that the slightest trace of alcohol made me breathless and dizzy. Various doctors missdiagnosed me until a house move and new GP (who's mother had AF) actually diagnosed AF.

I was referred to a main hsospital some forty miles away ( I live in Devon) and told the options. Flecainide as pill in pocket and atenalol a beta blocker were prescribed and life went on. The idea of ablation did not then appeal to me and in any case that was only available in London 250 miles away. After about six months my AF had progressed to the point I was begging for the ablation which I had at Royal Brompton Hospital (one of the top heart hospitals in London) in 2005. That was unsuccessful and it was repeated in 2006. Despite great improvement in my condition and reduction of my AF burden the AF persisted so in 2008 I had a third ablation for AF since when I have had none.

About ten years later I then developed atrial tachycardia which was cardioverted successfully. It returned , however, within about six months and another cardioversion was done. Sadly this went horribly wrong and I went into a very rare condition known as Pulseless Electrical Activity when the ECG shows all is well but the heart muscle is not responding. After a period of intense CPR and several broken ribs they got my heart working again since when I had a fourth ablation to deal with the atrial tachycardia. Eventually due to several scary moments when I nearly blacked out I had a pacemaker and now live a more stable life though at 79 I have several other health issues.

Here in UK patients are not looked at as cash cows and if your consultant offers a treatment it is becuase they think it will help you. They are on salary so not dependent on how much work they can bring in. I say this to show that we do still often have multiple procedures as we go along our journey.

I must also mention ectopics as I suffered greatly with these after one of my AF ablations. I had a constant rolling "rhythm" of every secnd , third, fourth etc up to eleven and back to second. This went on for some three months until I was taught the slow deep diaphragmic breathing trick since when I have had none. Use you diapragm not your shoulders and slow your breathing down to six or fewer breath per minute for at least five minutes.

I hope this snapshot helps.

[Hylda2]

As an active 80 year old. Please don’t be afraid of a pacemaker!

[SamAdmin]

Good morning MeganMN,

Thank you for your post on the Atrial Fibrillation support forum, we understand your concern with anxiety regarding the prospect of a repeat ablation. It is not unknown that an ablation can be repeated but of course this would be discussed with your Doctor the best treatment is offered to you on a personal basis.

You maybe interested in downloading our SVT patient resources heartrhythmalliance.org/aa/...

Kind regards

SamAdmin

Booklet

[opal11uk]

Don't fear a Pacemaker, it has changed my life for the better, however I still have to take meds as my pacemaker prevents going beneath 60bpm but it won't stop it going higher and into A/F. hence the meds. I have had an ablation prior to this but unsuccessful so chose not to have any more. I have had P/A/F for 30 years.

[Golfer60UK]

Good morning from south west UK, bit of a cloudy start today.

I started my AF journey some three years ago when I dislocated an already replaced hip. A few weeks later on the golf course I did not feel quite right and after a few holes passed out. Took me a few hours to recover,

Fourntunately I 'found' a brilliant Consultant in Bristol, Ashley Nisbet, after two ablations which only lasted a few days in sinus rythmn, I took her advice and had a pacemaker fited with the AV node ablated. Am now back to enjoying a good quality of life, with golf three times per week.

Best decision after coming to terms with being now 'controlled' by a mechanical device.

The only medication I take is a blood thinner Apixaban for safety against strokes.

Best wishes

Dave

[Cookie24 in reply to Golfer60UK]

Do you still have Afib episodes? How old are you? I want to get back to golf...in the USA

[JOY2THEWORLD49]

Hi

What is your trouble hypertension/ high h/rate ot low h/rate?

Diltiazem was the med which controlled my rapid AF. On a low dose of 120mg AM. Bisoprolol 2.5 for control of BP.

Sounds like youneed a caring, interested h/specialist.

cheri JOY. 75. (NZ)

[MeganMN in reply to JOY2THEWORLD49]

I have had Atrial Tachycardia which was fixed by ablation, and now have atrial bigeminy (PACs) at a burden of about 30,000 a day. They are trying to get that under control but have been so gar unsuccessful.

[JOY2THEWORLD49 in reply to MeganMN]

Hi

That's a monsterous hurdle.

My rapid AF is under control with Diltiazem 120mg AM.

Persistent kept down now from the CCB. Calcium Channel Blocker.

I take Bisoprolol 2.5mg for control of BP. PM.

Luckily apart from in early days sweating, now with 60s day H/Rate and avg night H/Rate 47.

I have no symptoms, pain, palpations and flutters. Aren't I lucky but h/rate 186bpm has done damage to my heart.

To think I used to run 100m/yds and come 1st. Now I can't trek fast. My heart tells me what speed I should go as I hate stopping during a simply walk. Level is better.

I hope my interested and caring heart specialist gets it right for you.

It was a private chinese man who solved my problem.

I have thyroid cancer possible return after 4 years. I was recalled and just had a MRI Pituitary Gland as the PET scan showed warm. Another 3 areas need to leave me hanging as another CT scan with contrast is booked in for November to compare imaging.

I'm an anti iodine infusion radioative .............. Lots of risks to it. I declined RAI treatment post thyroidectomy on Low Risk.

Do take care. Check B12 is up at 500-700.

cheri JOY 75. (NZ)

[MeganMN in reply to JOY2THEWORLD49]

Thanks for the reply! I appreciate all of thrbwisdom very much!