Never ending atrial flutter/afib

[Debfro34]

Hi sorry me again. My husband is back in afib/flutter and he is now being loaded with amiodarone for yet another cardioversion. He is permanently breathless and always exhausted. He will have the procedure again in January we hope, depending on the waiting list.

In the past this drug has pretty much reverted him back to normal after a few days, this hasn't happened this time. We are waiting on the results of his latest echo done 3 weeks ago. Previously his heart failure was 35%

Will they just keep going with these cardioversions? He has had one ablation as well. He is on about 7 medications and at 61 keeps asking me to smother him with a pillow! I think he is mostly joking but he misses his hiking and riding so much.

He is going to see an electrophysist (SP?) but not very soon. he is on the waiting list. He has his pacemaker as well. My son also has hypertrophic cardiomyopathy and has a defibrillator is this what will happen to him also?

Will they ever manage to control it. seems nothing works for long?. Anybody else had the same?

Thank you for listening/reading. I am finding all this so hard the constant worry I mean

[Palpman]

My sympathy to you for having to deal with 2 people in your family with heart ailments.It would be helpful to know what your husband's heart rate is and if it is fast and steady or if it varies. This will ascertain if it is Aflutter or Afib. If it is Afib then I would want an AV Node ablation with an appropriate PM.

Why does he have a PM?

If it is Aflutter I would ask for another ablation as it will more than likely be successful.

That is just my opinion. Take care.

[Debfro34 in reply to Palpman]

Not sure what his heart rate is tbh although at one appointment he was toldthe pacemaker was doing its job. That was put in March this year. He was told at one appointment he had a flutter and the latest one told he is in afib. Will another ablation make a difference?

[Buffafly in reply to Debfro34]

The pacemaker only stops his heart rate going too low. An AV node ablation would mean his heart rate would be totally controlled by the pacemaker and he wouldn’t be affected by the AF. Flutter ablations have a high success rate. Sounds like the sooner he sees the EP the better. Best wishes ❤️‍🩹

[Palpman in reply to Debfro34]

Ablation for Aflutter will most likely work and for Afib it may work. This is why I asked.

[Debfro34]

Thank you for the replies. He is dreading another ablation although I don't think it is the ordeal it was 10 years ago. He is just so tired of it , its been 20 years and there seems no solution that works for long. NHS waiting lists are so long too. Hopefully his mood will improve but I worry he may just give up. I have told the GP because he has never been so low before. Our children have told us they will not have children themselves to stop the gene moving on and he is upset for me that I will never be a grandma little things like that are getting to him. Big things like he killed our older son by giving him this disease keep being mentioned. Sorry to go on but I have no one else who might understand.

[MummyLuv in reply to Debfro34]

Deb. Where are you in the UK? Would your GP refer him to see Mr Steve Hunter at Sheffield general? He performs mini maze surgery that may help (if it is lone afib/flutter he has and no further heart abnormalities). The mini maze has a high rate of success in sorting afib, he would also need an ablation for the flutter if it is the right atrium which is the most common. This can be done at the same time and is called a hybrid. 4chickens is having a hybrid procedure done at Sheffield next week (she lives elsewhere in England).

[Debfro34 in reply to MummyLuv]

Hi that is interesting . We have the choice of two hospitals and one of them feeds to Sheffield. He is with the other one. Does he need to change hospitals to see Mr Hunter? Thank you

[MummyLuv in reply to Debfro34]

you are very lucky (in my view) to be local to northern general. Mr Hunter is a cardio thoracic surgeon and would work with an EP to target the afib and aflutter. I would ask for a referral from your GP. Mr Hunter did my mini maze he is excellent.

[AblatedCyclist in reply to MummyLuv]

excellent advice. He needs to get to a specialist. I’ve had both AFib and flutter, among other things, and my cardiologist and EP have corrected them with an ablation, medication, and a cardioversion.

[4chickens]

Hi Deb I see Mummyluv’s picked up your post. If your husband can see Mr Hunter at Sheffield Northern general go for it there’s nothing to loose and everything to gain. I’m having a mini maze and an ablation for AF and Afl all at the same time next week. Sometimes the communication isn’t great with Sheffield as it’s 2 departments and they appear to have an issue communicating, but their not doing the surgery. Mr Hunter is approachable and puts one at ease instantly, don’t knew about Dr Sahu who’s doing the ablation bit but just trusting that if he’s Mr Hunters choice he’s going to be good. Once your husbands physical health improves the rest can be addressed. Good luck

[MummyLuv in reply to 4chickens]

not long to go!! 💕

[AblatedCyclist in reply to 4chickens]

Great encouragement and advice! And good luck with your procedures next week.

[4chickens in reply to AblatedCyclist]

thank you

[HarrySubs]

63 year old Male - Long history of AF.... Navy Veteran.... When I am in AF, the feeling is very hard to describe to someone that has never this. It is one of dread, lack of control, anticipation and impending doom. I did not want an ablation to cure my AF which a heart specialist kept on insisting that I needed and I thus subsequently sought out another heart specialist at a different hospital as I was not keen on invasive surgery and felt this as a last resort.

Needless to say, having a second opinion was truly the right move for me at the time. I have now been on amiodarone for maybe 8 years now knowing it could be the drug of "last resort" before surgery. I do have a few side effects but not many. I need a sunblocker most of the time during the day to help the UV rays out and keep out of the sun as much as possible but that is ok. My dose is quite low (100) and more of a servicing dose than a full on treatment with the average dose double this.

I manage my medication successfully but find that if I miss a day I know that I will shortly drop into the dreaded "fluttter".. I know in the future if this drug affects my kidneys and liver adversely (bloods need regular testing) then I will need to reconsider ablation / cardioversion.

Pragmatically thinking and studying about this infliction, I do not think that I am worried now about having a pacemaker fitted straight away as soon as the medication can no longer do the work anymore. Cardioversion is a great idea and may stun your AF for a while only. A massive dose of amiodarone stopped my AF and worked great. If the ablation will only work for a while than you may need another and another and another, is there any point? I definitely would consider going straight onto a pacemaker route.

It is about management and quality of life that is so important to you making the right decision. You need to avoid stress triggers, alcohol, lack of sleep as these can bring on AF or lessen the effect of the current medication. You sometimes cannot avoid stressful times such as divorce, moving house or employment issues but everything can be managed to a degree by relaxation techniques, resting, mindfulness and not too much rushing around.

I do understand totally that it can take over your life but it shouldn't ruin your life. My heart specialist is at the Gloucester Royal Hospital and treats patients completely different that my first heart specialist at Bristol. My pulse is regular at approx 55-58bpm resting. Before medication, this was approx 66bpm.

I check my pulse regularly with a simple smart phone app which actually picked up my initial AF situation strangely enough. At the time I discovered up my ailment using the app, the doctors hadn't even known this was possible.... Keep on in there and down let it control your life. You need to control it.... Have faith in yourself and do what you can and try not to be afraid... Best of luck

Heart Plus App Screenshot

[higgy52]

Was on amiodarone for nearly 2 years, good for heart, but damaged my thyroid,Had 3 cadiovertions, seem a waste of time to me, one lasted 30 minutes 2nd one 2 hours, 3rd one 5 hours,

Had 3 Ablations over 4 years,

And the 3rd one seem to work that was 3 year ago,

Still in normal rhythm, get a 5 second fast heart rate every now and then, got a leaky valve, I'm 66 and still work, breathing is fine,

In my opinion Ablations are the way foward , would never go back on amiodarone,

Good luck

[HarrySubs in reply to higgy52]

Hi Higgy. Regards to thyroid. My thyroid failed years before the new surgery I joined took initial blood tests in 2007 and acted on it. I treat my thyroid condition with levothyroxine and manage according (150ug a day).

I had a couple of gamma CAT scans 2 years ago (resting v exercising) and my heart was in good shape physically. After the scan the operator stated that I had a "leaky valve" which initially worried me. However the operator said that was not of much concern as valves start to leak when you are 35-40 years old and the leakage was quite commensurate with my age.

If ablations or cardio-versions work for the individual it is really great news. Management is key to all remedial action which I believe strongly is exacerbated and may be primarily initiated by stress.

[higgy52 in reply to HarrySubs]

Glad your doing OK,I take carbimazole,

As my pertuitry gland is sending a signal to my thyroid to produce to much thyroxine,

As I understand, to complicated for me to understand

[HarrySubs]

Best of luck for the future. Keep chipping away...

[GooseEggs]

Please watch for Amiodarone side effects. My mom was only on it for 4 weeks when the side effects began taking a serious toll--including lung scarring (pulmonary fibrosis). Her cardio (in South Carolina) insisted it wasn't the Amiodarone and wanted her to keep taking it. He insisted there could not be any serious side effects after a month. He was very wrong. Amiodarone can be quite dangerous. My mom now has had two ablations and is on Dofetilide, also known as Tikosyn (like Amiodarone, this is also a serious anti-arythmic drug but she is fine on it). She also takes CoQ10, Taurine, and acetyl-L-carnitine. she's 93 and all her labs have improved!