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
I can understand how great it must feel. Just shows its possible! Long may it continue !
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
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 🙏🏻
I overworked day before digging in my garden. Hurt my back but worth it to get normal rythem.
No matter that others may or not have - YOU have - Yipee and long may it continue for 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……..🤞🤞🤞🤞
Thank you so much 😊
So pleased for you and long may it continue. Can’t imagine how it must feel after all this time. Brilliant news. xxx
Thank you so much it feels great hope it stays 🙏🏻Xx
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. 🤞
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 ?
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!.
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
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 .
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?
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.
That's brilliant! And so encouraging to know it can happen. Long may it carry on!
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 🌻🥳🙏💐♥️🎶
Thank you so much it feels great I pray it stays in sinus 🙏🏻😊
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
Wow -- how wonderful! Best wishes for it to continue!
Thanks so much 😊
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!
Thank you 😊 I took Amiodrome for 5 months before never done nothing for me 🤷♀️That’s not a nice medication to be on 😕
I know! Vile side effects! 🥲
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!
Thank you 😊 good luck with your cardioversion 🙏🏻
Best news ever Pinky100 we all need thatxx
Thank you so much ☺️x
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!
Hi Pinky, are you still in normal sinus rhythm?
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!
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.
Hey pinky hope your well and still in sinus rhythm 🌹
Hiya yes I’m still in sinus rhythm 🙏🏻 Hope your good x
So glad to hear 🙏 I’m still in a persistent flutter but been managing
What’s flutter the same as afib
Very similar just more organized but more rapid like tachycardia
Hey pinky hope you doing wonderful just checking up on you and hoping your still NSR. Happy New Years 🌹
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 ☺️
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.
Hey pinky hope things are well with you 🌹
paroxysmal atrial fibrillation converted back to sinus rhythm 
Getting back into sinus rhythm
Sinus rhythm with ectopics
Returning to sinus rhythm
