hi Matt

I have been on flecainide in the past, it was the very first med ever
tried for my SVT and worked very well for me for 2 years.

For one of my EP Studies / Ablations they used the ESI non-contact
mapping array, which is where they use a specialised catheter to build
a 3D colour map of the inside of the heart chamber they are studying.
They used this because that arrhythmia they were trying to locate was
a focal tachycardia, very very close to my sinus node and was
aparently very difficult to map with conventional EP techniques.

If your specialist was having trouble locating your pathway
successfully or identifying a focal spot causing the arrhythmia, it
might be worth asking them about the non-contact mapping.
(depending on the type of SVT you have, I have had both arrhythmias
generated by 'focal' areas in the heart, others of mine have had
'pathways' that they use in a type of feedback loop, called re-entry).

Ending up in A&E is pretty horrible, fortunately most of my tachys
have stopped before that point or I have managed to stop them myself,
but I'm glad at least I can go in for them to stop the arrhythmia if
it comes to it, still I am afraid to push myself during exercise these
days as that is the main thing that triggers my symptoms. I used to go
swimming 3 - 5 days a week and I am trying to lose weight, so now I am
having to be more careful, many days I cannot exercise at all without
triggering off palps.

I haven't really heard of many arrhythmia support groups, some heart
support groups are attached to local hospitals, I tried to join one
once, but they suggested I might not find the group useful as it was
all coronary patients with most being over 60 (I did not see that as
being a problem, I was 22 when I approached them, but none of them
seemed to have experience with arrhythmias so it wasn't of much help).

There do seem to be groups for pacemaker and ICD (defib) patients, but
support for arrhythmia patients is lacking at local level in most places.

The support group I run is for a specific type of SVT called
Inappropriate Sinus Tachycardia (IST), but unfortunately we only
'meet' online in chat room and on our forum as most of our members are
widely spread throughout the world (IST is one of the rarer types of SVT).

If I had more time I would love to set up a local support group for
arrhythmia patients, I'm sure people would come to it.

I wonder if any other Arrhythmia Alliance members know of local
support groups for people with arrhythmias?

take care,

Fran

--- In heartrhythm-AA@yahoogroups.com, aUser wrote:
>
> Fran,
>
> Thanks very much for your reply.
>
> My last ablation was exactly one year ago now. I have been on
> flecainide (2x50mg) plus a low doseage of antenolol for this
> period and have for the most part been fine. I still get the
> occasional flutter of which there seem to be different types - they
> feel different - some are palpatations and others more like "pops". I
> have managed to ignore these.
>
> Because I had 3 ablations last year, the first two of which were
> clearly unsucessful, I have not had the nerve to come off the
> medication. I am told I have simple SVT but the pathway is in a very
> tricky place.
>
> I have not had the sickness and fainting you have had but the few
> occasions last year when the tacycardia didn't stop really freaked me
> out. I really do not want to be in A&E again!!
>
> I am hoping the SVT will be sorted one day and know I will have to
> pick a time to come off the medication.
>
> I hope your EPS and ablation go well.
>
> And thanks again for your postings to this group. I agree that it
> will become really useful.
>
> Do you know of any patient support groups out there that organise
> meetings? I still feel
> quite isolated in this respect.
>
> Matt