New confused member from UK

Hi

Thanks for letting me join this comes by way of introduction...and because I feel alone right now. I might manage to string together a developing story here.

I have arrived here because I went to my GP (family doctor?) Last Thursday and left in an ambulance to A and E (Emergency room?) flashing lights but no horns in case it made me worse They stabilised my HR (which was 150 +) checked I was not having /had no signs of heart attacks and sent me home after a few hours with a diagnosis of Paroxysmal AF. Back to GP who put me on Warfarin, and Propranolol . Referred to Cardiologist (Electro-physiologist) Dr Murgatroyd at the London Arrhythmia Centre: I am due to see him next Monday evening. Sitting at home not really able to do much without sending my HR into silly numbers. All rather sudden and depressing. HR is now 70 at rest instead of 50 which is my norm and escalates to silly figures if I take a short walk. I have had to cancel much of my life for the time being even getting round to sorting HMRC (IRS).

None of this came from nowhere. There had been a prior report that I had slow AF when I had another procedure about 6 months ago. This was checked but the decision was it was most likely the computer on the ECG (EKG?) making a error because I had Athletic Sinus Bradycardia and Ectopics. Ectopics were often frequent (say one in 7 beats) but pronounced benign. I am well used to my heart being odd but never had myself debilitated in this way before.

Thanks for reading thus far

Les

Hello Les, Sorry to hear of your condition. There are other athletes like you here. Sabine Ernst over at Royal Brompton has a stellar reputation and there are discussions about her here if you do a search.

Les,

The Warfarin is for anti-coagulation and the Propranolol is a beta-blocker ( BB ). The BB is used for controlling heart rate in afib. The two ways afib can be a quick exit from the planet are stroke and cardiomyopathy (from too high a ventricular rate for too long). These meds address those issues. From what you've written, you are still in afib and neither of these meds will change that. You might convert on your own, otherwise to get back in normal rhythm, you'll need either chemical or electrical cardioversion. If you are cardioverted, then the question is how to keep you in normal rhythm. You might stay in rhythm on your own - might depend upon how long you've been in afib (afib begets afib). Otherwise a rhythm control med or an ablation may help. Rhythm control meds don't always work really well and if you choose an ablation, I'd take researcher's suggestion about going to see Dr. Ernst - probably try to go to see her in any case.

If you are very early in your afib career, you might be able to use lifestyle approaches to control your afib and stay in NSR. Detraining for an endurance athlete can help as can optimizing your electrolytes - potassium and magnesium (this has worked for me for 10+ years).

George



Edited 1 time(s). Last edit at 03/17/2015 04:40PM by GeorgeN.

Les

I had paroxysmal AF for many years which progressed eventually to 24/7 AF. Cardioversions lasted only about 36 hours before I went back into AF, and drugs made me feel worse so I eventually decided that ablation was the route for me.

The success rate for ablation depends entirely upon the skill and experience of the person doing the procedure. I regularly read reports of many people in UK having had 2 or 3 ablations and still having AF. I assume this is because the electrophysiologist doing the procedure didn't have the skill or experience required. You need to choose carefully!

In 2002, when I was researching this, no one in UK had much experience so I went to Bordeaux in January 2003 to have Professor Haïssaguerre do it - he is the person who did the landmark research which led to the procedure. I have been in normal rhythm, no medication, since then - 12 years and counting!

I have seen Dr Murgatroyd at King's College Hospital many times for follow-up. He is rather brusque but knows his job. He does ablations; however if I needed an ablation now in UK I would go to Sabine Ernst as suggested above. As far as I know she has better success rates and has done more ablations than Dr Murgatroyd so has more experience

If yu are going to the London Arrhythmia Centre does that mean you have private medical insurance and so can choose your consultant? With the NHS you have to be clever and persistent to get the referral you want.

Do ask if you need any more information - I am somewhat out of date with my experience but there are other UK members of this group with up to date information.

Gill

Hi

Thank you everyone for your answers. Yes I have PHI and you are right about the NHS alternative being tricky...the NHS budget for the procedure is not sufficient so it makes a 'loss' for the hospital (I think). Whilst I am mildly 'athletic' this is only true in a very general way I cycle, rather slowly and sedately but go quite a long way sometimes. It seems I have some decisions to make
L

Hi Les,

I had an Ablation 15 months ago by Dr Antony Chow,
he's based between Royal Berks, Reading, UCL London and private work at the Wellington.

With the exception of a couple of post ablation funnies I've been in NSR ever since.
He's also treated 3 friends all had positive results.

Regards

Andy

Day 2

Pulse still high (75 bpm) but rising slightly less quickly when I move around so still in AF I suspect 8 days now. Booked in to see Dr Ernst on Tuesday evening so that is now sorted. Thinking of getting an Alcor having chatted to Gill this afternoon. My dose of Beta Blockers has been increased. It might be my head but seem to get tired quickly right now.
L

Les

It's an AliveCor we talked about.

Gill

AliveCor UK:<[www.amazon.co.uk]

I have an iPhone 5 but don't use the case to attach to the phone. The AliveCor just needs to be close to the phone.

George

Day 3...am I in Afib or not?? My pulse has gone really steady, I feel good and plan to go out for a gentle ride tomorrow. My pulse is a higher than normal, and I am on Beta blockers but feel really good and very steady. Started taking Mg today not really enough to have an effect...trying to drop more High GI foods, sometimes think that sugar is a trigger. Waiting Amazon to get round to sending my AliveCor. Trying to chase up bit and bobs of medical records
L

Hi Les,
You have found a friendly and very knowledgeable forum.
I support you in consulting with the very best EP you are able to see, Dr. Ernst.
After 2 ablations with a less experienced EP here in the U.S., I decided to go to Dr. Natale, as I believe only the best of the best are really able to tame this Beast.
Good Luck! And, please keep us in the loop, so to speak.

JohnB

Welcome to the forum Les,

The new AliveCor monitor is a smaller universal device that is not built into a specific case for a given model smartphone, it cost $75.00 U.S. and is a very handy little tool, the new detector algorithms are a big help for most folks as well, confirming whether each 30 second ECG strip recorded shows AFIB, is Normal, is 'Unreadable' due to too much noise interference, and thus must be repeated, or detects that the ECG is 'unrecognizable' meaning that it likely shows and Arryhthmia other than AFIB and yet not Normal Sinus Ryhtmn either ... In which case it's a good idea to email or bring with you those such strips to your EP.

I think every active Afibber ought to have one of these clever devices, but just be discriminating in what strips to send to your doctor and try not to overwhelm them with a tidal wave enunciation of ECGs capturing ever little squiggle of your heart. That is the one consistent reservation I have heard from the caregivers side of this new biometric data Revolution from such patient controlled monitoring devices we now see popping up all over.

And good job on choosing Dr Ernst from your pool there in the UK. There may be one or two others with a reliable reputation there in the UK, but Sabine Ernst has a very good reputation for solid work there and with a paroxysmal case like yours you should do very well.

Cheers!
Shannon



Edited 1 time(s). Last edit at 03/20/2015 10:37PM by Shannon.

Thanks the new version here is £73 as often the case we pay more I think I have paroxysmal in that I can feel no afib at the moment nor even ectopics: beat is very regular. However pulse is raised, particularly since I am on Beta Blockers. My LiveCOr is in transit and totally agree that you need to be selective in the data you use. Whole point is to 1) Assure me of what is going on 2) Identify and demonstrate differences that happen form time to time (but almost never when hooked up to an ECG).
Les

Day 5

Well got my Livecor which sadly does not work with my phone so borrowed my son's Ipad. Great news I was in NSR and my HR is falling, So it looks as if I am likely paroxysmal. I do find it difficult to distinguish between being in AP and just having my normal PACS. So I plan to go off on a gentle ride tomorrow hoping for some sunshine.

Les

Very glad to hear that you're in sinus rhythm. I think the AliveCor is a brilliant little gadget - occasionally I get bursts of ectopics which are hard to distinguish from AF but the AiveCor can tell the difference.

Gill (12 years and 3 months of nsr since ablation in Bordeaux, no idea how much longer it will last!)