Four days ago, I reported that after 4 ‘failed’ ablations, I had undergone a ‘successful’ cardioversion for what my EP said was atrial tachycardia. For four days, I enjoyed normal sinus rhythm and a heart rate of between 50 and 70bpm.
However, my joy was short lived. This evening, whilst watching a rather emotional programme on TV, my heart rate shot up to 136bpm and my Kardia showed the dreaded ‘Possible Atrial Fibrillation’ reading. Disappointed doesn’t begin to cover how I feel!
I tried some deep breathing with no result so I then took 60mg Diltiazem (my EP had prescribed this last time this occurred) having taken my usual 5mg Bisoprolol and 2.5mg Ramipril earlier this evening.
Of course, it’s Bank Holiday weekend so I can’t get in touch with my EP. Any thoughts/ suggestions from fellow sufferers will be gratefully received.
I’ve now had 3 cardioversions and 4 ablations and I simply can’t bear the thought of yet another procedure. If only there were a way to live with this dratted condition with a reasonable, preferably good, quality of life. I only hope I can find it 🤞
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frankiec5
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Sorry to hear the CV was only a short time success, frankie. Many have experienced the same.
Living with persistent/permanent afib is not the worst thing if controlled with medications as can be attested to by some here including myself.
Do your research, consult with your EP, and make the best decision. Ask your EP if you are a candidate for an antiarrythmic drug or a maze procedure. You don't mention taking an anticoagulant ?
Thank you so much for the encouragement. I’m feeling pretty down about things tbh.
Yes, I take Rivaroxaban (and Furosemide) every day together with the Bisoprolol and Ramipril.
If I could just get back to my previous level of activity without the breathlessness, I’d be OK with living with the condition. Since I was diagnosed 3 years ago, I have put on over 3 stone in weight and I feel rubbish. I used to walk several miles every day and I’m desperate to get back to some kind of fitness again. I just hope my EP can help me achieve that without yet more procedures.
Hi Frankie. Have you researched mini maze as an option? I’m not sure where you live to be able to access this. It has a higher success rate than catheter ablation for persistent afib.
Re lifestyle things. 3 stone is a lot - not surprised you feel rubbish. You've had your thyroid checked I take it? Hypothyroidism is linked with AF as well as numerous other symptoms- weight gain being one.
Have you looked into the Zoe nutrition programme? Quite a few here have done it. They check your blood sugar sensitivity, ability to absorb fat, gut microbiome and a number of other factors that impact on our health. Gut health is nowadays thought to be super important for overall health. The programme gives bespoke advice on best foods to eat, including recipes. Check out their YouTube channel. They are all medics btw or high level researchers. Can't promise AF will disappear but it might improve your QOL.
Just as an aside, I checked out the Zoe programme just yesterday and was dismayed to find that coeliacs are excluded. I've been diagnosed coeliac for over 20 years and do not need any advice or help with maintaining a gluten free diet but was interested in diving deeper into diet and its effects on my system.....but apparently that's not happening, with Zoe anyway.
Oh thanks for flagging this. I guess because it's research based they have to do some limitation. Let's hope in future they do a study of this part of the community.
That's because the Zoe programme is based on health algorithms and dietary trends that are useful for the generally healthy population, but not really ideal, or suitable, as lifestyle needs or choices for people with most chronic or long term health problems.The same is true for the majority of diets or supplement programmes based on new trends or research done on people with no pre-existing health issues.
What could be a solution for the generally healthy can be a curse for people with specific health needs.
You've probably dodged a bullet there , as well as saving a large amount of cash.
As, you already know a lot about the gluten free diet you could always look into being referred to a Dietitian instead as they can order the tests to see how well you are doing and offer supervised changes to do a few tweaks appropriate for you to improve it if necessary.
I found it useful to compare and contrast the diet and lifestyle advise from recommended websites and charities for all of my health conditions (particularly taking note of which supplements or herbal preparations I should or shouldn't with different medications and conditions) .
Then I worked out which things were advised to help create the most improvement , and which things to avoid , that had consensus of opinion across each set of illness recommendations , to create my own personally useful diet and lifestyle routine to work with.
I don't have Diabetes , but I included advice about controlling blood sugar too.
It works to put in that time to do this and is so much better in the long term than any, "one size (does not) fits all" App or Diet regime.
Reduces the added Stress , Diet and Health Anxiety that these app led systems can produce too. It's becoming quite worrying to see how many people are becoming scared of eating a blueberry.
Thanks for replying and you make some interesting points, but when it comes to 'specific health needs' I don't have any - other than avoiding gluten like the plague, that is. I've seen several dieticians over the years and they were unable to offer anything useful other than to say I obviously knew a lot about coeliac disease and are managing it successfully, and keeping to a healthy diet.
I'm always interested in anything that can have a positive impact on my health which is why I looked at the Zoe website.
many of us have been where you are the one thing I will say is that if your doctor talk to you about a pacemaker hesitate go for it. I have no regrets. My new heart had its first birthday middle of February. If you get one, the first thing you need to learn is to get it out of your head. Don’t concentrate on it constantly. That’s where you have problems. My EP recently reminded me that not everything wrong is because of your heart. Keep that in mind it’s pretty much a known fact, ablations, etc. are simply Band-Aids For temporary relief
So sorry to read this Frankie, having suffered for over 20 years I know exactly how you feel.....will it never leave me alone! The most peace I ever had was when, in 2015, I had a pacemaker fitted after my one failed ablation, I decided I was not going to have anymore, and drugs to suit until last year when I went into perm.A/F, however drugs changed and increased and I am back to 'normal' again, well normal for me lol, albeit in heart failure. Sadly, for a lot of people, ablations do not do the trick, those that do are very lucky. Bank holidays are a b.nuisance, I have a urinary tract infection, sample submitted Friday but of course no results now until Tuesday then wait another day for the prescription to be sent to the Pharmacy and I am suffering, there should be cover for such occurrences, so my advice to you would be if worried over anything to do with your heart ring 111 because heart patients deserve priority, however maybe 4 days after ablation your heart is still in recovery and that could be the reason.
I was wondering what your EP would say if you had contacted him or her? I guess you are in the USA, since, here in the UK, there would be no quick or even possible specialist contact available.
I guess, too, your physical symptoms were much worse than I get, as (fingers crossed here), so far, I have, even if not exactly happy to, been able to sit myself down till it all passes.
I’m in the U.K. and lucky enough to be able to use my health insurance to see an EP privately. I’ll email his secretary tomorrow to ask for advice.
My arrythmia has always been constant, not episodic, so I feel tired and breathless on the slightest exertion all the time. It’s that which is impacting on my quality of life and has led me to undergo 3 cardioversions and 4 ablations in the 3 years since I was diagnosed - a triumph of hope over experience it seems!
I just wish my symptoms could be managed without yet more invasive procedures. I really have had enough now. 4 ablations in less than 2 years has been a lot. And now the disappointment of a failed cv.
Note to self: stop feeling sorry for yourself, keep trying to lose weight. exercise more and remember that this bl***y thing won’t kill you!
I was lucky to be able to go privately on insurance for my first ablation for atrial flutter four years ago but after that the costs of the insurance (AXA PPP) went through the roof. I was shocked and felt let down by that company and have heard heard that BUPA do not do that.
I still see the same specialist and did pay for the last consultation recently in order to get in quickly, what with my palpitations and AF on the increase this year and with my home ECG monitor wrongly flagging up VT. Dear me, we do go through the anxiety mill with this, at times. Now all will be on the NHS, of course. I see a wonderful chap, and I feel happy with the way I am being treated at Leicester.
I think feeling sorry for ourselves is a fair response, though. The way you sound is much like me. I struggle to keep reminding myself that it won't kill me as it certainly feels like anything could happen at times, if you know what I mean - even though, I have to say, my symptoms aren't all that difficult given what others write in here with.
Hi Steve, I am happy with Glenfield too. Think I have asked you this before but which consultant are you under?Are you taking part in the latest research they are running using the newest technology?
That professor is, I gather, one of the most highly regarded in a unit that is, itself considered one of the best. We are lucky to have two such excellent consultants. I hear the unit has just invested in the latest ablation equipment, too.
Hi Steve, yes, we are very very lucky to have this hospital and such skilled consultants. My friends found Prof Ng when he had an article in the Sunday Times a few years ago and he has looked after me ever since although I do see him for follow ups privately (not sure I can continue this now I'm retired!).I believe the Prof used the latest technology on me, which is why I am in the research being followed for 12 months. I can see on my discharge papers that the radiofrequency was higher but more precise with only 4 second burn time. 🤞for success.
It was with Dr Sandilands in mid-2019 for persistent fast atrial flutter but since then AF has slowly reared its head along with lots of palpitations that make me feel as if AF is about to start (but mostly it doesn’t - not that the feelings are that different).
My ablation was for afib and flutter which was discovered during the procedure so I am pleased about that. Would you consider another ablation? Those feelings are awful and I dread having them again although I am a realist and expect it to return at some point.
I was quoted 80 to 85% success rate for paroxysmal afib and I understand flutter is much easier to treat
Dr Sandilands recently said that he expects I’ll need another ablation before too long. I’m not looking forward to that at all. The first was straightforward and I was home the same day. I had never been into hospital till then and being an awful sleeper, I wouldn’t look forward to having to stay overnight, which is more likely for an AF ablation I think.
Hi Steve (again), yes, I had to stay in overnight and I am not a good sleeper either! I was in a bay on my own, with a holter monitor around my neck linked to the nurses station. I felt rubbish, nausea and with a headache and migraine. I couldn't sleep, kept getting up to the toilet and was still awake at 4am.
Since then I have had nightmares, must have been traumatised 😜
I felt safe though having just had someone dancing around in my heart for the best part of 3 hours. They looked after me very well.
Talking of holters reminded me of a fantastic ruched holter neck top my wife wore not long after we went out together (a long time ago!) when she was sweet seventeen and me a skinny nineteen year old!
Now that top made my heart race and skip a few beats I can tell you!! I’d never heard of holter monitor back then. Happy days.
Hi there, here are my thoughts. If you want permanent relief then you must be prepared for more procedures. Depending on your age, a successful procedure can be a thousand times better than a lifetime of anti-arrhythmia medication as they can and often do cause more problems later. If your previous ablations were conducted by the same EP/facility then perhaps find a new EP/facility with a better track record. Last but not least please look into the maze/mini maze procedure. Many members have found long term relief from AF and swear by it. Again, it needs to be done by a competent specialist/facility and I understand that it's not cheap. I'm not a doctor but just offering my opinion. All of us here are on some kind of medical journey. We just have to keep going until we find the relief that we are looking for. Best wishes.
Maybe I’ll feel stronger in a day or two once this disappointment has abated/ ablated??? 😉
I have every confidence in my EP who is considered to be one of the best so I shan’t be looking elsewhere. But I will certainly do as you suggest and check out the maze/mini maze procedure.
And meanwhile, yes. You’re right. We just have to keep going.
How old are you? I would have thought if mini maze not an option then pace and ablate would be the next step. EPs tend to want to keep trying ablations I think but cardiologists tend to favour pace and ablate - pacemaker then AV node ablated. Many people who have had it done wish they’d had it sooner.
It is such a slog to be an arrhythmia sufferer. After six ablations and a dozen cardioversions plus trying out the entire pharmacopoeia over the last 12 years, the journey (for me) will likely lead to pace & ablate. Meanwhile, we watch our diet, be as active as possible, do yoga & TaiChi, go tea total (decaffeinated) … and STILL the beast returns. Hang in there!
sorry to hear this, I understand the 100% disappointment and I only ever had 1 cardio conversion procedure fail. I like you feel emotions straight to My heart.
I'm in the process of trying to get my AF controlled with medication and I think it works ok,until the dreaded “EMOTIONS “pops it's head up and AF comes out to play big time too.
I'm sorry to hear your news .I'm not surprised you feel awful , I'm always saying that sometimes trying to find a cure for what you have can feel a full time job , and there's nothing that makes you fell more sick than trying to get well.
It's really disappointing when you find you can't get the "fix" others experience, but as Mav7 said, if you have got persistent/ permanent Afib and you exhausted the fixes and finally accept that the procedures aren't going work it can often help to start you on a more positive path to feeling better.
By taking the foot off the pedal and reducing the Stress by concentrating on slowly finding a medication and lifestyle routine that works for you , rather than constantly riding the rollercoaster from one procedure to another , you often find that you do begin to feel better , less exhausted, and have a well managed , enjoyable quality of life while treating your AF long term.
As Mav7 says ask about the Maze option , but don't give up hope and optimism about the life you will lead with AF if you can't have one.
Well I’m baffled. I had my third cardioversion a week ago; there followed 4 days of sinus rhythm and then disappointingly, two days of my Kardia recording ‘Possible AF’ and ‘Tachycardia’,
Then last night it suddenly showed Normal Sinus Rhythm again and a heart rate in the 50s. This has never happened to me before. I’ve only ever flipped OUT of sinus rhythm - never INTO it!
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