Gone back to sinus rhythm after 18 mo... - Atrial Fibrillati...

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Gone back to sinus rhythm after 18 months

Pinky100 profile image
61 Replies

Hi all i have hypertrophic cardiomyopathy I’ve been in permanent Afib for nearly 18 months I have had several things done to try and get me back to NSR without success… but the other day I flipped back to NSR I can’t actually believe it .. it feels wonderful to be back in NSR I’m praying 🙏🏻 it stays

has this happened to anyone else after being in afib so long

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Pinky100 profile image
Pinky100
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61 Replies
Desanthony profile image
Desanthony

Brilliant. Long may it continue.

Pinky100 profile image
Pinky100 in reply toDesanthony

Thank you 😀

Jalia profile image
Jalia

I can understand how great it must feel. Just shows its possible! Long may it continue !

Pinky100 profile image
Pinky100 in reply toJalia

Thank you I never thought I would revert on my own after so long 😀

jeanjeannie50 profile image
jeanjeannie50

That's good news. Have you any idea what may have caused your heart rhythm to return to normal? I once reverted during pre Christmas drinks with neighbours and eating lots of salty Doritos.

Jean

Pinky100 profile image
Pinky100 in reply tojeanjeannie50

Hi Jean I haven’t done nothing different I’m totally in shock still after so long! …. but so happy it feels great being in sinus rhythm I just hope it stays 🙏🏻

Milds profile image
Milds in reply tojeanjeannie50

I overworked day before digging in my garden. Hurt my back but worth it to get normal rythem.

CDreamer profile image
CDreamer

No matter that others may or not have - YOU have - Yipee and long may it continue for you.

Pinky100 profile image
Pinky100 in reply toCDreamer

Thank you 😊

Great news Pinky, they say miracles can happen so there’s nothing to say this isn’t one!! Fingers well & truly crossed for you……..🤞🤞🤞🤞

Pinky100 profile image
Pinky100 in reply to

Thank you so much 😊

Frances123 profile image
Frances123

So pleased for you and long may it continue. Can’t imagine how it must feel after all this time. Brilliant news. xxx

Pinky100 profile image
Pinky100 in reply toFrances123

Thank you so much it feels great hope it stays 🙏🏻Xx

Nick1957 profile image
Nick1957

Great news. Its a lovely feeling indeed!

Pinky100 profile image
Pinky100 in reply toNick1957

Thank you 😊

Nannysue1 profile image
Nannysue1

Hi there. I've not come across anyone on here with hypertrophic cardiomyopathy before. I have it too and have been in permanent AF for 15months! How wonderful for you, wish this would happen to me. I've never even thought of it as a possibility and suspect you've just been very very lucky. I'll keep my fingers crossed for you that it lasts. 🤞

Pinky100 profile image
Pinky100 in reply toNannysue1

Having hypertrophic cardiomyopathy is bad enough and being in afib makes symptoms 100 times worse how are your symptoms in afib ? I’m still in shock I have gone back into sinus rhythm I just hope it stays 🙏🏻

I’m under st Barts hospital I have recently had a defibrillator fitted have you had a ablation ?

Nannysue1 profile image
Nannysue1 in reply toPinky100

Actually my HC didnt really cause me any trouble. Diagnosed around 9 yrs ago, they thought it was a heart murmur but sent me to the Brompton to have an MRI. Turned out to be HC. I had gene testing at St Thomas' and a linking gene couldnt be found. Theres no evidence of it being hereditary in my family, so they think I've just been unlucky with a gene that's mutated. Then 7yrs ago I had an awful attack on Crete, no idea what was happening to me as I speak no Greek. Spent overnight in hospital. They apparently tried flecanide first which didnt work, so used amioderone which did. Consequently I've been on amioderone for 7yrs and it's worked well apart from 2 episodes in that time. It's now stopped working. I've been offered an ablation at St Barts and am on waiting list. I'm going to worry about whether to have it or leave it as it is when the appointment comes through but coming off of the amioderone, which is a big must for me, I dont want to take it anymore. Like you, the odds arent great alongside the HC, I've been told 40-50% chance on 1st attempt and 60-70% with a second. Thing is so many people on here have a rough time after, I'm not sure that I want to put myself through that with slim odds. It's a bugger isnt it. Never even heard of AF before then, boy do you learn quickly!.

Pinky100 profile image
Pinky100 in reply toNannysue1

Ahh I’m the same my HOCM didn’t really cause me problems just when I went into afib my symptoms became awful such shortness of breath I was on Amiodrome for 5 months didn’t do nothing for me and couldn’t tolerate it made me feel so ill glad it worked for you I’m also in same position of ablation I did refuse as the odds are not in our favour and the the thought of going through ablation and not working just puts me off I have been told ultimately I will be in permanent afib but I do hope I have some years of freedom from afib I’m 49 and feel awful in afib If you do go for ablation I hope it works for you x

Nannysue1 profile image
Nannysue1 in reply toPinky100

I'll let you know. When I get a date for procedure, I'll make a decision. Hoping this lasts a while for you, let us know how you go.

Pinky100 profile image
Pinky100 in reply toNannysue1

Yea let us know will keep in touch!

Zeinmassri profile image
Zeinmassri in reply toNannysue1

Hi just so you know I’m in the exact same boat as you. I’m a 35 male with HOCM and suffer from persistent atrial flutter and PAF. I currently take amioderone and bisoporol ad well as diltiazam and all three medication barely work and they have sever side effects and I was told by my EP that I have a 50 to 60 percent success rate and honestly it’s not much different from someone with a normally structured heart they have a 70 percent success rate and we both share the exact same complication so my advise if you do get the chance of doing an ablation do t hesitate and do it it’s not as bad as you think. I have done two ablations for my flutter that were both unsuccessful even though they have a high success rate but currently waiting to have an ablation for my AF which for my case is the right procedure. It’s really not a bad procedure it’s not invasive and recovery is fast it’s not like an open heart surgery .

Nannysue1 profile image
Nannysue1 in reply toZeinmassri

Thanks for your reply. Once to know there's someone else with the same problems. Not sure how convincing it us to go for the ablation though, as you've had 2 that have failed already?

Zeinmassri profile image
Zeinmassri in reply toNannysue1

Yea but for me they were the wrong ablations they should have done an Afib ablation. Honestly I don’t know about you but for me I really want to get off the meds and I feel like ablation is best solution for me because I have family members with similar conditions do the ablation and it was successful and they were Afib free for two years until it came back and they said they will not hesitate one bit because the quality of life is a lot better. Honestly I’m not trying to tell you ablation is the best option for you it all depends . If you are content and comfortable with the quality of life you have while on meds then yea I wouldn’t recommend it but if the meds are not doing the job they are suppose to and on top of that your not feeling better than why not Just a personal opinion but it’s best to take advice from an EP who studied your case. Trust me I’ve don’t extrensive testing in the past six month from MRIs to atleast 10 holter and blood works and ultrasound and echocardiogram ecgs you Name it.

Belle11 profile image
Belle11

That's brilliant! And so encouraging to know it can happen. Long may it carry on!

Pinky100 profile image
Pinky100 in reply toBelle11

Thank you so much 😊

Adalaide2020 profile image
Adalaide2020

What a fantastic post! I hope and pray you stay in sinus. It's all any of us want I guess. I feel so 'alive' when I go back into sinus. I am soooooo HAPPY for you. Long may it last 🌻🥳🙏💐♥️🎶

Pinky100 profile image
Pinky100 in reply toAdalaide2020

Thank you so much it feels great I pray it stays in sinus 🙏🏻😊

ETHEL103 profile image
ETHEL103

Fantastic.

Pinky100 profile image
Pinky100 in reply toETHEL103

Thank you 😊

Joc1007 profile image
Joc1007

I also have hypertrophic cardiomyopathy and PAF and have been told by cardiologist that I will eventually go into permanent AF so that's brilliant news and gives me hope. Best of luck in future

Pinky100 profile image
Pinky100 in reply toJoc1007

Do you go in and out of afib ? I’m still in shock after 18 months of afib and my heart decides to go back in sinus rhythm 🤷‍♀️

Ducky2003 profile image
Ducky2003

Hurrah!!!

Pinky100 profile image
Pinky100 in reply toDucky2003

Thank you 😀

Snowgirl65 profile image
Snowgirl65

Wow -- how wonderful! Best wishes for it to continue!

Pinky100 profile image
Pinky100 in reply toSnowgirl65

Thanks so much 😊

Slidingdoors99 profile image
Slidingdoors99

No Pinky! It took amiodarone to flip it back for me! It’s great when it’s back isn’t it? 🙏 it stays there for you!

Pinky100 profile image
Pinky100 in reply toSlidingdoors99

Thank you 😊 I took Amiodrome for 5 months before never done nothing for me 🤷‍♀️That’s not a nice medication to be on 😕

Slidingdoors99 profile image
Slidingdoors99 in reply toPinky100

I know! Vile side effects! 🥲

Wow that's super news! 🙏 😃 Be well!!!

Pinky100 profile image
Pinky100 in reply to

Thanks so much 😀

Fullofheart profile image
Fullofheart

Wow, that's brilliant. I've had AF for 17 years. Been permanent for quite a few years. Cardioversion next month.Well pleased for you!

Pinky100 profile image
Pinky100 in reply toFullofheart

Thank you 😊 good luck with your cardioversion 🙏🏻

Karendeena profile image
Karendeena

Best news ever Pinky100 we all need thatxx

Pinky100 profile image
Pinky100 in reply toKarendeena

Thank you so much ☺️x

Tricia239 profile image
Tricia239

Wonderful. I pray you stay in sinus rhythm.

Pinky100 profile image
Pinky100 in reply toTricia239

Thank you 😊

Bambi65 profile image
Bambi65

Yes!!!! My husband had hypertrophic cardiomyopathy, and he had several bouts of AFIB which he was Cardioverted for. He has been in NSR for over 6 years now, just about the time I started having afib. The joke around here is he gave it to me. Then 3 years ago I gave it to our dog, who also has Prox. Afib. The fun dosent stop there, also 3 years ago I gave it to my mother. Glad your in NSR, STAY there!

Pinky100 profile image
Pinky100 in reply toBambi65

Ahh afib is catching 😆 That’s great your husband been free of afib for 6 years that gives me hope I have had 3 cardioversion each only lasting a few days

Is your husband on medication to keep him in sinus rhythm

jeanjeannie50 profile image
jeanjeannie50

Hi Pinky, are you still in normal sinus rhythm?

Pinky100 profile image
Pinky100

Hiya Jean yes I’m still in sinus rhythm it’s been 10 weeks now it feels a miracle I do get lots of funny heart beats now and then but apart from that it’s been good but I must say i worry if and when will I go back in afib!

jeanjeannie50 profile image
jeanjeannie50 in reply toPinky100

That's really good news to hear. I think we AF people are more aware of our heart rate than normal people and even they have odd beats. Dr Sanjay Gupta of the cardiology department at York hospital has a talk about it on YouTube.

Zeinmassri profile image
Zeinmassri

Hey pinky hope your well and still in sinus rhythm 🌹

Pinky100 profile image
Pinky100 in reply toZeinmassri

Hiya yes I’m still in sinus rhythm 🙏🏻 Hope your good x

Zeinmassri profile image
Zeinmassri in reply toPinky100

So glad to hear 🙏 I’m still in a persistent flutter but been managing

Pinky100 profile image
Pinky100 in reply toZeinmassri

What’s flutter the same as afib

Zeinmassri profile image
Zeinmassri in reply toPinky100

Very similar just more organized but more rapid like tachycardia

Zeinmassri profile image
Zeinmassri

Hey pinky hope you doing wonderful just checking up on you and hoping your still NSR. Happy New Years 🌹

Pinky100 profile image
Pinky100 in reply toZeinmassri

Hiya I’m doing good I’m still in sinus rhythm 🙏🏻 I had a couple of runs of AF in December but went straight back to Sinus rhythm after a few hours … I am on a lot of medication to keep me this way I really don’t want a ablation as the odds are not good with HCM hope your doing good are looking to having a ablation?

thank you for asking and a Happy healthy new year to you ☺️

Zeinmassri profile image
Zeinmassri

I’m glad your went back into NSR. Yes I’m scheduled for an ablation just don’t know the exact date but I’ve been told will be in January. I have to give it a try because the medication I’m on is very toxic.

Zeinmassri profile image
Zeinmassri

Hey pinky hope things are well with you 🌹

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