Anyone else suffering from atrial flutter out there ?

[AmberandIvy]

Atrial Fibrillation and ablation in 2018 and now trying to cope with Atrial Flutter....

[Cheese-on-toast]

I suffer from fluttering and low hear rate and am awaiting a 7 day cardio tape fitting. I recently suffered takotsubo cardiomyopathy. I had an angiogram which I found very painful as sedation and morphine was not effective.

[AmberandIvy in reply to Cheese-on-toast]

Oh that sounds awful....

[Murderfan58]

I have PAF and get heart flutters every now and then plus palpitations and miss heart beats. But on Flecainide and Apixaban plus Ramipril. I found out in 2020/2021 I was born with a small hole in the side of my heart. Jaundice in 2017 left me hearing my heart beat in my left ear. But when I have a flutter or palpitation I just sit or stand and do my pre natal breathing and just make myself relax and it's soon over. Pre my diagnosis and being on heart medication I used to panic . But having the diagnosis and on the correct medication I don't .

I had 3 major operations and 2 minor ones last major when I was 38 a total hysterectomy and need 4 bags of blood . Had to laugh when the cardiologist told me about the hole as I had those operations all with a dicky heart and one knew. Because under my old GP they never sent me to see a cardiologist .

Only took moving over 100 miles to the north west to get a GP who sent me to see the cardiologist who helped me . Plus I was born disabled even though under a neurologist he never helped me . But my new neurologist not only gave me a tablet to stop my limb jerks and 4 seizures I had over 32 years within 2 weeks my limbs where still and no seizures but he sent my blood to have the whole genome genetically tested this was January 2020 he didn't get the results until March 2022. But 1st April 2022 aged 63 finally know what I was born with and it's rare . Plus found a Facebook group for my hereditary condition and my who life makes sense. I am not weird but have HPX. I am now 66 if I hadened of moved I still would be in the dark and may not have been here now .

My fit healthy husband died from cancer aged 47 in 2004. But he wanted me to live the best life I can since my move I have . Before had no life I existed and had my parents and mother in law dependant on me . But couldn't abandon them .

But my life is full now and a big part of that is having the healthcare I have here and medical staff that care . Plus all the friends I have made and being close to my family .

I ramble on but that's me 😀

[AmberandIvy in reply to Murderfan58]

What an amazing story....puts my little flutters into perspective.....

[Murderfan58 in reply to AmberandIvy]

We all have our own stories and no one is above any one else. I have a rare hereditary neurological condition. So I tend to ramble on. I am a chatterbox in real life .

What amazing me is what people have over come on here. By everyone telling their story and asking questions it's helped me understand my body more plus learnt tips how to cope in different situations.

People here want to help eachother as well as getting help . So it's give and take . A lovely forum to be on.

[AmberandIvy in reply to Murderfan58]

I totally agree and it helps everyone to be able to communicate in safety with people who understand.....

[OceanPaddler]

I have had atrial flutter triggered by Flecainide. It is when atria are beating at 300 beats per minute. Not all the atrial bests result in ventricles contracting . I found the episodes I had really difficult to cope with. They were distracting, have a sin between my shoulders blades and the were exhausting. I could not walk on the flat without becoming breathless. They lasted for hours at a time. I had a flutter ablation and no more Flecainide, none since March. Do you have a plan for management of them with your cardiology team?

[AmberandIvy in reply to OceanPaddler]

That sounds awful....I know what yiu mean about the back pain....in between my shoulder blades can be so painful...stress I expect.

[Breesha]

I have just started having flutters since Forgixa Dapha ? Has been added to my long term meds Digi, Biso water tabs ..never felt them before

[Twosumsmum in reply to Breesha]

Flutters and A flutter are 2 different things . Palpatations are flutters . Where as AFlutter is a constant arrthymia

[AmberandIvy in reply to Breesha]

Flutters are new to me ....started this year....I used to panic dreadfully and the stress woukd make me sweat and give me terrible back pain....now when an episode comes on I am able to manage them better without panic but it is still and awful feeling. I think I am going to accept I need a second ablation....why suffer like this.

[Twosumsmum]

hi

Yes I have Atrial flutter , I have had it for 10 years , I also get paradoxical AFib . And sick sinus tachy Brady . At first it was treated with cardioversions every 6 months or so the time frame getting shorter over time . When the sick sinus kicked in , I needed a pacemaker to stop the low heart rate drops and allow higher doses of diltalazem to be given to try to slow the flutter rate , only ever bought the rate down from 300pm to 250pm .

I now have a new CRPT pacemaker and had an AV node ablation that’s sorted the whole party my heart was forever trying to play .

[AmberandIvy in reply to Twosumsmum]

Oh my goodness...you have really worn the T shirt....that gives me hope that I can one day really get this sorted...its been a shadow in my life for ten years now. My consultant has said tge only thing that will help the Atrial flutters is to try a 2nd ablation - the first fixed the Fib....I now need to fix the Flut....I'm fed up with worrying that it's going to strike at any moment and it's hard to believe even now that it's unlikely to finish me off.....thank you for sharing your experience with me.

[Friendliarthur in reply to Twosumsmum]

Hi Twosumsmum,

My experience has been identical to yours. PPM alone (after 3 ablations) made some improvement but it wasn’t till I had later AV Node ablation that I’ve more or less got back to normal.

Good luck and Cheers.