I know most of you have AF, whereas I have atrial flutter/SVT/atrial tachycardia. I had an ablation for flutter in October 2020 and am now 55. I enjoyed 3 peaceful years, taking only medication for an under active thyroid and an anticoagulant ( my choice , not the doctors). On Thursday evening my heart suddenly decided to shoot up to 210bpm and stay there on and off for 4 hours. (Pre ablation it went up to 250bpm).
I was blue lighted to resus and they managed to get it back under control. I am now back on Bisoprolol.
I have to be investigated further at arrhythmia clinic and quite possible have a second ablation.
My question is that at 55, like us all I would love to reach a ripe old age (my dad is 90), but given the shock and disappointment of this set back I find myself battling dark thoughts today of how I will ever do this. My ablation which in theory has a 95% success rate has only lasted 3 years.
I know it is quality of life, not an absolute cure.
I feel frightened again about the future, scared to travel or exercise. I have been caffeine free, eat healthily, don’t smoke and am teetotal. I try and walk 10,000 steps a day and am not overweight.
I know many people have multiple ablations or control it with medication/ lifestyle changes, my question really is how many years have you lived with it and is your quality of life good?
Sorry for the long rather self centred post!
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Diagnosed 2004 after ten years missed opportunities . Had ablations 2005. 2006 and 2008. No AF since. 2010 diagnosed with prostate cancer, had radical prostatectomy plus thirty three radiotherapy sessions and three years of hormone treatment. (six monthly blood tests show no signs of cancer as of December last).
2017 went into atrial tachyardia and DCCV stopped heart requiring CPR and several cracked ribs. 2019 Had ablation for A Tach. HR since around 95 un medicated 75 with drugs and occasional bradycardia. 2022 had pacemaker fitted to combat brady.
Apart from both knees and ankles arthritic I'm now quite healthy though my fell walking and skiing days are long gone. At nearly 78 I have no intention of slowing down . Still building race engines and enjoying life.
Be positive, stay well hydrated and have fun. What is the alternative???
Thank you for taking the time to reply and for sharing your story Bob. Your positive approach is definitively the key and the health challenges you have faced are both humbling and inspiring.
So you must have been 59 when diagnosed? You say 10 years of missed opportunity- were you symptomatic prior to the 2004 diagnosis?
Following this latest episode, they seem to think it is SVT or atrial tachycardia, rather than the atrial flutter which I was ablated for. Not sure what the differences are, but assume all three due to rogue electrical pathways.
Yes my wonderful (not) GP reacted to my complaining of "bubbling in my solar plexus" by sending me for numerous endoscopies. It was only when I moved house and changed GPs that my new GP diagnosed AF. Her mother had AF which is the only reason she knew about it. Hopefully things have inproved in the last twenty years but I fear not in many places.
A good doctor makes such a difference. I will continue to document my journey on here and see how things go. The replies really do help though, so thank you.
I was diagnosed in 2005, but had symptoms of AF long before then. I remember driving home from work and thinking I can't breathe properly. I went straight to my doctors surgery but no one could see me. Went home and it soon disappeared. I could never understand why the group of cyclists I rode with were all stronger than me going up hills, same with the group I did cross country with - why was I always last! Looking back I can now see what the answer was. At home I'd have periods of feeling really weak and weary, but if I sat they would soon pass.
Don't be frightened of what's up ahead. I think the more we accept what we have the easier it becomes to cope with. Fear is something that can keep our hearts behaving badly, its like fuel that feeds a faulty heart rhythm. It took me a long time to realise that, but I can assure you it's true. Take your mind off of it, any way you can, and the quicker it will subdue.
I needed to read this! Im off to Australia and New Zealand to see my daughters and you have reminded me to stop worrying about what may happen and live in the moment.
great response here Jean and agree with the need to come to terms with reality and the strength of positivity. It’s frustrating that it’s still a lucky throw of the dice in getting a GP that offers proactive and good care when we find ourselves entering into this area - no fear but I’ve decided my GP is not handling my care so I’m looking for another as we need to do all we can to give ourselves the best chance of quality of life and listening to the people on here I know that that is something that is a possibility - Thanks again Jean for taking the time to respond to me the other day - it really is very much appreciated!!
Thank you so much for your reply - it is very comforting and also reassuring to hear from fellow members of the ‘club’ that have lived with the condition for a period of time.
I think it has hit me hard because I was completely my old self, energised and pretty much anxiety free. To have the physical set back has brought everything back mentally, but you are so correct in saying that it will only ‘feed the beast’. I will do my best Jean and it is made easier by the support of people like yourself x
Lived with it for about 34 years. I am 76 in April and despite or maybe because I have had a number of ablations my quality of life in respect of AF is the best it has been for many years.
Very reassuring to hear from a ‘long term’ Afibber - do you mind me asking how many ablations you have had and if you take any medication ? Have you found that it has limited things that you do - travel for example?
Know how you feel, same condition as me. Started in 1996 (age 42), did not get treated for a few years (Doc's not up to speed - my view). Did not change lifestyle (did not know I had to - would have liked Doc to have advised me at thi time) and progressively worst with Doc's increasing medication periodically (up to medium dose of Diox and Biso). Put on Flex in 2018, after 3 moths had bad Afl in Dec 2018, blue light to ICU, Doc murmured something like "are they still using that bloody stuff" (it does help many on here), had CV, then ablation in Feb 2019. Told would be recovered in a few days to a week!! It was/is a long gradual recovery, EP put me on Diox and Biso and allowed a degree of self medication. At this time I recognised that the previous increase in medication cause my SVT to transform to bad Afl (had to lay down or collapse). Decided to monitor by BP and HR and amend medication accordingly - did not re-start the Diox ended taking just 1.25 Biso (this took months of trial and error). I should say that after 3 months I did feel better than I had been for years with the odd ectopic.
Continued to gradually improve, felt great, best for many years and took a post retirement job (still working) improving gradually and I believe still improving from ablation (4 years ago). During period of high stress in October 2021 went into a strange Afib lasted 90 mins, changed outlook after this warning and do not get stressed anymore (or at least try not to - sometimes difficult but worth being aware and adjust outlook - not easy).
During the time since ablation cut out high caffine drinks (love coffee but not had any), sugar (this is a silent killer) and at first alcohol (now a bottle of wine and few beers a month). Drinking plenty of water eating avocados, magnesium supplement and bananas, taking plenty of rest and leaving 12 to 14 hours between last meal at night and first the next day.
Whilst we are all different (I do not have a thyroid problem) we do have similar conditions and maybe some of the things I found during my journey may just help you. If you would like further detail you should see my posts from 2018 to around 2020.
Interested in your choice of taking anticoagulants when you don't have to, I was more than keen to get off them when advised by my doctor. Its easy to feel downbeat with your condition but its important, though difficult, not to. Take comfort in the many on this site that are in a similar position, look at Bob, he has been through the mill but has come out the other end feeling good and enjoying life.
Thank you for your reply and interesting to read your previous posts. I think the self help measures are all good that you have mentioned. I excluded caffeine and alcohol completely 4 years ago , try and exclude salt and am not overweight + never smoked. I am guilty of enjoying a bit of chocolate and try and get my 10,000 steps a day, although I have been scared to jog since my ablation. I think that was the reason I felt a bit despondent, as it felt like despite best efforts I was back to square one!
I do have a battle with anxiety and had a stressful week in the run up to the episode, so I don’t suppose that helped.
The wonderful support on this group really helps and I am doing my best to look at the positives.
- I meant to add that I continued with the anti-coagulant because my mum had a stroke at 68. I am glad I did following the episode last Thursday and the hospital were as well.
My elderly friend is almost 90 and has had AF permanently for very many years. I think the heart is a strong organ if suitable genes are in place as yours likely are!
Well, you should be fine, then! Neither of mine got past 80 but were both life-long smokers, so I hold out hope for me! The list of this and that that is wearing out or creaking gets ever longer as the years go by though!
I’m 44, had paroxysmal Af since I was 19 diagnosed in 2016, have had two ablations for Af, I now have clusters of pvcs and snippets of fast heart rate, but mainly Af free since my second ablation. I’m a worrier and think will I live to make old bones, I had a baby in-between ablations and try my best to live my life to the fullest, I try and keep myself busy and relax when I can. It’s very hard not to concentrate on our hearts but what can we do? Your next ablation may nail the gremlin for good, all the best.
It is difficult not to worry isn’t it? Do you still take any meds ? I’m glad that things have improved for you, I hope it continues. I think there are many worse things, so feel grateful that there are things that can be done for arrhythmias. I think the unpredictability of it is the unsettling part. Good to hear from you.
I’m taking bisoprolol 2.5 twice a day, my resting heart rate is dropping below 40 now though, possibly inviting the pvcs on, so next time I speak to the ep I may ask for a meds change, can’t take flecainide as my ventricles are borderline enlarged. I had a wonderful nearly three years off the meds after my first ablation though. Heart function according to my ep is perfect.
I was so happy to be off the Bisoprolol - like yourself 3 years free, but now back on 2.5 mg twice a day. Mine has been dropping to mid 50’s - pre Thursday’s episode it was mid to upper 60’s lowest.
I’ll keep it fairly short. I had paroxysmal attacks (thought it was anxiety) for many years before AF was diagnosed.
Twenty years ago it became permanent. With the short term events, and for the first year, when it was permanent, the rate was very high. It did settle over time. I’ve had no treatment other than beta blockers digoxin and warfarin, and a couple of times in hospital to bring down a high rate. After the first five years the beta blockers were stopped. I too, found exercise really difficult and frightening.
Then aged 69 I started cycling, (can’t walk far, arthritic feet joints), very gently and very short distances. At the age of 71 I was road cycling for miles keeping up with similar aged friends at a decent pace, but I naturally struggled a bit on hills. I have to warm up for some miles before upping the pace, and if occasionally the rate goes too high, I stop and let it settle, I have it on a display on the bike.
I’m 75 now, and sadly no check up these days, so no idea if it’s doing me any good or not, however, my resting rate is often between 50 and 60, and I am a lot fitter than I was when I started, though now I’ve peaked, and can feel I’m not quite as quick as I was.
So I say give it a go, slowly upping your activity or distance, and don’t lose time, years, as I did, medics are reluctant to say you’ll be ok in case something goes wrong, and you sue them.
One caveat is, I didn’t find dynamic competitive exercise, such as tennis or badminton helpful, as too much adrenaline involved!
Thank you so much for taking the time to reply. Very reassuring to hear that you were my age (55) when diagnosed. I love that you took up cycling and you are right - I mustn’t let fear of what might happen stop me from enjoying life.
Interesting that the beta blockers were stopped and that you didn’t need an ablation. This gives me hope for the future.
I had my first noticeable afib/tachycardia issues 9 years ago. Took another 2 years before I ended up with first ablation for afib and flutter. 3 ablations later, the afib and flutter are under control. But my atrial tachycardia is worse than ever. I’m keen to have a 4th ablation that will focus on that alone. My episodes are pretty much daily, though dronedarone/Multaq keep the events shorter and slower. I just hate the meds and the unpredictability of the tachycardia. Wishing you luck sorting out what your next steps will be.
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