A meaningful diagnosis at long last

[Cypbill]

Having suffered with what I was told was AF for some 8-years, symptoms being noticeably exasperated by everything from beta blockers to the various rhythm control drugs I was prescribed.

In desperation I posted my history on this forum and received comments from many people, one of whom was a specialist in the field (who's name I feel only fair to withhold). Having read my details it was suggested I was almost certainly suffering from Sick Sinus Syndrome or Tachy-brady Syndrome and that being the case, the drugs I was being prescribed would almost certainly aggravate the condition, where in his opinion a Pacemaker would control the very slow heart rates and in turn possibly reduce or negate the onset of the AF. I conveyed this information to my cardiologist and electrophysiologist both of whom dismissed the suggestion out of hand. Anyway, after many difficult years, I virtually insisted I have a reveal recorder implanted, this was done 3-months ago and unsurprisingly I've now been informed I need a pacemaker as I do suffer with pulse rates as low as 32 with numerous pauses of around 6-seconds which are inevitably followed by rapid AF.

I'm now looking forward to the pacemaker and hopefully a far better quality of life with greatly reduced instances of AF (fingers crossed).

I will certainly post how things progress.

Thanks to everyone who have taken time to post their experiences, information is knowledge and power, remember its your body and your heart, read as much as you can, understand your condition and make informed decisions.

[BobD Volunteer]

Good result. I suspect I know who you refer to and they were pioneers in the field.

[Cypbill in reply to BobD]

Thanks, and your not far off the mark BobD

[BobD Volunteer in reply to Cypbill]

Grammar Bob. Should have said to whom you refer. !

[jennydog]

Great post. I suspect that there are many others who were pointed in the right direction because of what they learned on here!

Please do let us know about your pacemaker experience. Good luck with it!

[Cliff_G in reply to jennydog]

Indeed. I owe my 15 good AF-free years to the precursor of these forums, Usenet. There was an afib group on there (became the Yahoo group later) and one member suggested (this was 2001/2002) that I seek an ablation, which at the time was really only done at one hospital in the UK.

By then I'd had a fair bit of expert but behind-the-times professional advice. I vividly recall a visit to my cardio to tell him my fib was getting worse and that Flecainide wasn't working, and he turned right round and said "well, I think it is working" ! Went right off him at that point. After going private I was then offered a right-atrial flutter ablation plus meds, which I was later told had only 20% chance of working. And it would have been private, Harley Street, at £42,000 - in 2002!!

One of the Usenet group members had been to France to where the PVI ablation was invented and before too long I was booked in there too. It was a successful ablation, albeit in two visits, all the more remarkable since I was by then in continuous fib.

Prior to that I was also told on the group about vagally-mediated afib which it became clear was what my patterns were (and still are). Another pre-internet thing - I went to the British Library to copy Prof Coumel's chapter in Falk and Podrid about neurally-mediated afib and I managed to curtail a fair number of episodes using tricks based on upping my heart rate by gentle exercise, etc. More effective than the Flecainide was! I still have that photocopy.

Knowledge is definitely power. Whilst we may not have a medical background, we do tend to home in on what really matters in our individual case and I'm so glad my current EP is a really good listener, and often confirms opinions and experiences I express to him.

(What happened after the 15 good years? An aortic dissection is what. 14 hour open heart surgery which set my fib off again.)

[Cliff_G in reply to Cliff_G]

How did I end up replying to a post 7 years old!?

[Hidden]

You may want to ask about Cardiac Resynchronisation Therapy (CRT) - a pacemaker strategy that has proven to be very effective in certain types of heart failure. I'm in the process of getting one installed now and I'm also hoping for a big improvement to my QoL

[Cypbill in reply to Hidden]

Thanks for taking time in replying, CRT is something I've seen reference to but something I have no knowledge of. However, I have been told I have 2:1 heart block, is this a condition your familiar with?

[Hidden]

Hello Again,

I'm afraid I'm only familiar with my own condition. It probably needs a real health professional to give advise but I would be interested to know what the outcome is.

PS - If you look at my posting history I have posted some comments that you may find helpful.

[secondtry]

Congratulations Cybill on sticking to your guns in the face of medics scepticism.

I fear too many people over 60 just assume 'you do what the doctor says'. My experience is very different. These days 99.9% of medics specialise in increasingly narrow areas and believe if they step outside that they risk Prof Indemnity insurance claims and loss of patient confidence - so the patient is the only one left to research here and elsewhere and approach their treatment from an holistic standpoint and most importantly (as you know) question treatment and make suggestions themselves.

I turned down an ablation offer from two cardios and an EP, suggested my drug dose (Flecainide) was increased to a medium dose first and then consulted two Alternative Practitioners for supplement/diet/lifestyle advice. No AF for 3.5yrs. I may well need an ablation/Pacemaker in the future and console myself that any complications due to postponement are compensated by improved procedural techniques.