Taking Responsibility for your Own Health & Treatment

[Jong1945]

I'm really sad seeing some of the posts on here, since it reminds me of what did happen with me, and how much worse it could have been had I not insisted on certain things and finally taken matters into my own hands and went for a private ablation.

There are now many much more knowledgable Cardios and EPs than when I first had AF (which was 1994, and worsened until I had an ablation in 2002), so if you are lucky enough to have such care then great. But I see that there are still waaaay too many folk getting poor or even the wrong treatment.

My AF worsened over many years and I started reading up prodigiously and educating myself until in about 1998 I discovered from one of these support forums about "vagal AF" which was me totally. By understanding this, I found I could have more of an effect on preventing or terminating AF attacks than the drugs made. I knew I had gastric problems but did not know what they were, and my GP and a G/Ent referral got nowhere. I persisted and eventually I found by chance that I had a wheat intolerance which had clearly been bothering me for years, and all that vagal hyper-stimulation I am sure made my descent into AF worse, or was possibly very much a reason why I "got" AF in the first place. But my doctors at the time did not adopt any particular relevant mode of treatment for me and didn't even seem to know about vagal AF (this unfortunately seems to be still rather too prevalent)

But all the time as my AF progressed from once every few weeks for a couple of hours and unbothersome to eventually nearly full-time and highly symptomatic (the doctors' phrase for giving me serious grief and made me feel awful all the time), the big thing I had heard about was that although ablation was the big new thing at the time (it didn't exist for AF when I first presented) it was accepted that AF ablation was difficult and had a success rate of only 70% or so for paroxysmal AF, and much lower for permanent. I was extremely concerned I was reaching the point where I was becoming permanent (I think I would have been had I stopped Flecainide). I finally took matters into my own hands. I was under a Cardio in London, whom I had been seeing privately, but I even bypassed him and knew of one of the early ablation "names", faxed him and got a date for the operation. Once that had happened I hooked back in via my Cardio (as I needed some pre-tests and a TOE), to normalise it back within the system.

I had my ablation, it failed 2 months later (I knew this was a risk and not unusual), I had a top-up abaltion and I have been AF free now for 15 years.

If your AF is bothering you (and there are plenty for whom it's not really a big deal) sometimes you just have to recognise that the person who you need to listen to is yourself. There are some great doctors out there who have the specific knowledge AND access to good facilities. There are also many other very good doctors who are currently being crushed by the weight of demand but are still trying to do their best. And there are some doctors who do seem to have given up fighting the system. But the more you are in contact with the latter ends of that list, the more essential it is to think about your situation first and take appropriate action.

Good luck all

[RiderontheStorm]

Much of what you say is very broad and at the same time true. It is terrifically saddening that one has to fight to facilitate what is the right thing to do. I have found much to my own frustration that I have to become a lay expert to check on what the experts I am paying for have to say. This is a truth whether dealing with a medical condition or my faulty air conditioner, etc. I sympathize for the people who get lost who have problems facilitating for themselves in any regard. Not the way it's suppose to be.

[Choroba13 in reply to RiderontheStorm]

I do agree with you. I had to learn so much on my own about afib “vagally mediated.” Every time I presented my questions to EPs (mostly males) during my appointment they got so annoyed by asking them questions. I always prepared myself so well not to waste anybody’s time. Instead of welcoming the patient’s interest to know more the EP expected me to be silent and accept the lack of success with ablation. It is hard for the patient to go on without any perspective to improve his/her situation.

[secondtry]

Amen!!!

[Barb1]

I so agree. You have to be your own advocate and project manager and researcher. So hard to seemingly fight the system especially when you may be symptomatic and certainly worried.

[Bud5 in reply to Barb1]

You are 100% correct. Knowledge is power. I refuse to go to a Dr who will not answer my questions and tries to intimidate me. I will not play the game.

[CDreamer]

Pretty much what happened to me - agree with all.

Stay well.

[momist]

Thank you John for that post. Very well put.

I was not aware that a wheat intolerance could be associated with AF. I have had a growing wheat intolerance for very many years, believing that I had Irritable Bowel Syndrome, but still eating sandwiches for lunch every day. Finally, about 10 years ago, my GP suggested I try avoiding wheat for a while, and my digestion recovered. Hooray! Now I still eat sandwiches often, but use that horrible Gluten Free stuff, and I have found I can tolerate small quantities of cake and pastry, but never ordinary bread. My AF started this year, in May.

Now, I wonder if these may be connected?

[Jong1945 in reply to momist]

After discovering my wheat intolerance I kept tryign wheat/bread occasionally over the years just to see if it had gone away. It never did, so now off it ~17 years. Gluten-free works as a wheat-indicator. Things are a lot better these days, particularly eating out.

For bread I almost exclusively use the Genius seeded loaves - two types a 5-seeds (my usual) and another which I think is just called seeded. Really is the best I've found.

I did discover the reality of vagal AF which is that whilst the vagus is predominant, it's actually a complex picture and it's the balance of sympathetic/para-sympathetic that counts. Having found out about my wheat intolerance, and quit wheat, I expected my AF to decline. It didn't - it got worse and tipped me into the ablation decision. I think things had just been so bad for so long that perhaps when the vagal hyper-stimulation reduced, I got "adrenergic rebound" - I know that vagal rebound is a thing, so don't see why adrenergic rebound might not be

[momist in reply to Jong1945]

That's really interesting! Yes, I use the Genius seeded, but more often the Warburtons Seeded which is my favourite. I like to ring the changes though and sometimes use white, baps, ciabatta's etc. All GF. I had the coeliac test (endoscopy with biopsy), but was found not to be coeliac. That left me with some reflux and a persistent cough which may, or may not, be associated with my AF. I'm still not convinced that my AF has anything to do with the Vagus nerve, but will keep an open mind.

Thanks for your reply.

[Geza10]

diet and what you eat has alot to do with AF well put John

[Icenae]

Sick sinus for 17 years. Pacemaker in situ. After 3 ablations , 1st no good, 2nd worked 2years, last one changed af to atrial tachy so i tried the magnesium route. It works for me. But I often feel awful after eating. Could this be the Vagus response.