Hi all new and lone atrial flutter sufferer - scared

HI all,

I am new here. Warning in advance for a long post.

I am a woman, aged 43, who for a year and a half has been having short episodes of a racing heart. I've suffered ectopic beats all my life and been told to ignore it and it is just anxiety etc. However I recently got diagnosed with something called Ehlers Danlos syndrome - a genetic disorder of the collagen in my body. This causes me to suffer from Postural Orthapedic Tachycardic syndrome - where my heart rate rises whenever I stand by more than normal, and my blood pressure drops.

Recently my heart has been doing more than this usual POTS rate rise - and clicking into a super fast beat sometimes over and over again - mostly during a morning, and after eating. One day it did this and didn't revert back to normal rythm. So i ended up in A&E, and was kept in the hospital for a week having a ton of tests. By the time the ambulance arrived my heart was in normal rhytm but just going fast whenever I tried to stand up. For the first two days everytime I stood I was in normal rythm - but fast - like 130 beats a minute. So they diagnosed POTS, after a tilt test, but the cardiologist thought something else was going on due to my description of the really bad fast heart rate - he thought I maybe had SVT and organised an in-patient stress test. During the stress test, as soon as I stood up, my heart shot up to 162 beats a minute and the technician told the doctor that I'd gone straight into SVT just from standing!

I have to say - I was very anxious during this test due to having had a panic attack moments before it due to a lift issue (long story) so I told them I wasn't sure the test would be accurate due to my heart rate already being elevated from the panic. They told me not to worry, they were getting good info. So on the treadmill I got. At a slow walk heart shot up to 176 and sort of stayed there. They asked me to cough - hard - I did and my heart rate dropped down to 118 and went into sinus rhytm. As soon as they increased the pace and incline straight up again to 176 and into SVT. Another cough didn't work, so they made me bear down as if giving birth. Went back into sinus rythm. But soon went back into SVT.

They took me off the treadmill and as soon as I sat down my heart dropped into normal sinus rhtym and steady at 105 (elevated I think due to the stress of it all).

Mostly at home my episodes of fast heartrate do NOT occur due to stress, but in the a.m when I am relaxed working (I'm a writer and love it) and they happen when I get up and walk about. Go up the stairs. Bend down and then stand up. These changes of position are nearly always what set me off. I even had it in the hospital from going from lying to sitting up in bed, but the holter monitor I wore failed to record it due to battery failure! But the nurses shoved a pulse monitor on my finger and my heart was there again - 176 just from sitting up!

I assumed it was this Paroxysmal SVT they'd talked of, but they kept me in and said an EP specialist wanted to see me. Turns out, he thinks it is atrial flutter and tells me I need an ablation. He thinks the POTS is kicking my heart rate up whenever I stand due to my dysautonomia, and then on occasion it is kicking me into atrial flutter.

Now here's the thing - he wants to ablate the flutter. But it only happens mostly for seconds or minutes and then goes back to normal rythm. I can cough and kick it back into normal rates too sometimes. On a couple of occasions it hasn't worked - hence the initial trip to hospital - but even then I'd still gone back into normal rythm by the time I arrived in A&E, despite being tachy.

I told him I was nervous about ablation as it can make POTS worse. He said he isn't ablating for the POTS but the flutter. So I said it wasn't generally that bad - some mornings I get five or six attacks of it, but they all tend to resolve quickly. I said I was having a legit panic attack during the treadmill test and haven't had one for years and thought that might have skewed it. He said the panic might have triggered an attack of flutter, but wouldn't have caused it and anyway, as I'd described I've been having these attacks when very relaxed at home. He then asked if the attacks were getting more frequent and I said yes - because they are definitely increasing. And he said with Atrial Flutter it tends to get worse and worse and eventually become permanent or become Afib and so he really rec's ablation.

So I am really scared. Ablate the flutter and risk worse POTS (worst case scenario in rare cases a pacemaker) or stick to the meds (bisoprolol) but risk the flutter becoming afib. I would love some advice?

Thanks so much!!

Hello Holly,

I'm new to this and can't really be of any help to you.
Sorry to distract you from your anxious request for advice on ablation.

But I'm curious as to the bisoprolol as I was told to take it for rate control in chronic afib.
It's not clear to me if you had an afib event, or if you were told you had afib, and if that was why you were given bisoprolol.
Or was it prescribed to bring down the heart rate, irrespective of any afib? Or, of course, maybe they didn't bother to explain.

Hope someone else can help you with your very special issue.
all the best,
ginny



Edited 1 time(s). Last edit at 07/17/2016 11:58PM by Ginny51.

Welcome Hollygal99

if you should have what is called a typical right atrial Cavo-tricuspid Isthmus (CTI) Flutter ablation it will not make your POTS worse. Keep in mind that CTI Flutter the vast majority of the time is a precursor to eventual development of AFIB.

As such, more and more EPs when faced with CTI flutter go in and do a full Pulmonary Vein Isolation ablation and then do the briefCTI flutter lesion on the way back out when in the right atrium. The idea being to kill two birds with one stone since it such a high odds of this kind of flutter being the canary in the coal mine for coming AFIB you might as well take care of both and very much up the odds of never manifesting AFIB while eliminating the CTI flutter in one fell swoop.

In any event, if and when the flutter increases, you can discuss this with your EP. I would recommend if an ablation is in the cards for you to have a consult with Dr Sabine Ernst at Royal Brompton Hospital in London. She is a very good ablationist and one I really like in the UK.

It pays to take your time ... when the time comes ... to partner with the very best ablation expert you can access. You can always keep your existing EP as your on-going clinical EP, but at the very least consider having a consult with Dr Ernst too for another view of your somewhat unusual scenario with POTS and Flutter. She is very up to date and is a very nice and very smart EP and woman.


Be well,
Shannon



Edited 2 time(s). Last edit at 07/20/2016 01:44AM by Shannon.

Hi shannon,

Thank you for your reply. And thanks so much for the advice on a doctor to see. I looked my guy up and I think he's fairly experienced too - he is US board certified and has worked in the US too as well as here, does a lot of private work, and has been in papers like the daily Mail discussing things like new drugs for afib etc. But it never hurts to get more info!

I am also thinking of paying to see my consultant privately so I can discuss the ablation with him in a more relaxed time frame - now I have found out he has regular private clinics.

Tonight I am struggling as I think the Bisoprolol has kicked my asthma off and I am not sure I dare use my inhaler due to being scared of setting of the flutter! I haven't used my inhaler in like three or four years as it always gave me a racing heart and made me feel unwell but this evening I am struggling with my breathing and may have to use it if it doesn't ease up - don't think the heat and the high pollen count help any either!!

Thanks for your reply

Hi Ginny,

The doc told me bisoprolol is also used for rate control in atrial flutter as well as afib and should help minimize or stop attacks until I can get the ablation. My rate goes up to 170/180 etc when in flutter so that is why they prescribed the bisoprolol.

Holly x

Hi Holly,

I'm in Wales and have just had the heads up on this guy at Cardiff Dr/Mr Fong Leong.

Thanks Shannon for the other info also.

Joyce

PS was a member of this board for a long time and got on so well with the info here that I've had many reasonably peaceful years. At least years of not being scared and also using nattokinase.
A month ago something?? triggered a weird fibbing/fluttering/tachycardia session which didn't resolve in 48+ hours so went to doc and was sent to A&E.
Bummer as have to behave for the time being and while waiting to see a cardiologist..... I'm pretty sure the leaflet in bisoprolol mentions asthma.

You will get great first hand advice and experience here. And not to worry....deal with the best and you will be back to normal before you know it.

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Does anyone know if calcium channel blockers would work with the flutter? My breathing is really annoying me as I am struggling and am sure it is the bisoprolol.

Also - are there sheets/info on here about diet etc?

Thanks again all for the replies!

Holly,

Flutter can actually be easier to ablate than medicate. Flutter circuits are usually in the right atrium and are physically large. Calcium channel blockers work to slow electrical conduction in the heart's tissue - good for AF when there are multiple areas "firing away" in the left atrium, but not so good for a well-organized flutter circuit in the right atrium. Common AAR's (anti-arrythmic drugs) that are used for AF can actually promote flutter. Rate control may be your best option until the ablation is done, assuming you're scheduled for one.

The good news on flutter ablation is that it's less complex than AF ablation and is associated with fewer complications.

Thanks for the reply. that makes sense to me now as to why the EP I saw was soooo keen to ablate. I said I only had short bursts of this (although they are becoming more and more frequent and the one that landed me in hospital lasted a while longer).

Although, he also wasn't hundred percent it was an atrial flutter - says it looks like one but doesn't necessarily behave like one - hence him really wanting to do an electrophysical exam and see what happens when he is in there.

I thought calcium channel blockers were rate control in the same way as beta blockers - thanks for explaining that for me. the beta blockers are kicking my behind lol side effects wise! My blood pressure is already low and drops a lot on standing - as the tilt test showed. So I am getting a lot of near fainting - lots of tiredness, quite a few ectopics on any sort of activity - and then the breathlesness which is the worst! I'm also not sleeping good and having nightmares every night - really vivid dreams!!

So that's why I wanted to know if I could swap out the beta blockers - but I suppose if I only have to take them for a while until the ablation then i might just have to put up with the side effects.