I am new to the group and going through a hard time at the moment. Was diagnosed with paroxysmal A Fib 18 months ago and through working with aFunctional Medicine doctor, got a break of 8-10 months. But then it slowly crept back. Once a week, always at night, until it was every night. My Fleccainide got increased and within 6 weeks my heart rate dropped to 30bpm. Fleccainide was damaging my heart so it was stopped. My heart then went into tachycardia; then to atrial flutter and now remains switching between AFib and A Flutter at 130-140bpm. I have been resistant to have an ablation but now am deteriorating. Currently I have crackly breathing at night and SOB; fluid filling my torso; pain in my liver and kidneys etc as my left ventricle is now not functioning properly. It is throwing my spine out due to weight of fluid which has triggered back spasms (I also have a spinal cord injury) My arrythmia nurse wants me to stay out of hospital unless I really cannot breathe at all; has prescribed water tablets and I have a cardioversion appointment on 15th Dec. In a way I am not sure what I am asking for here. When I read this back it seems like I am being stupid and should just have the abalation but I am convinced I can find an alternative (Dr Jack Wolfson The Paleo Cardiolgist) Feeling a bit confused and a bit poorly.
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Diddyd
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Any treatment is only for quality of life but since yours seems extremely poor then why prevaricate any longer if ablation will help ? (it does most people) . You owe it to yourself to try every avenue before it is too late.
Thanks for your response. I keep thinking that things will get better and up to the last 2 weeks have felt my quality of life is ok. It has restrictions anyway due to other chronic health issues so the impact on my day to day of AFib is not the same as someone who is fully fit and going out to work every day. I have always preferred a more conservative approach and alternatives so had just started on Berberine. Was hoping cardioversion plus this would be an improvement. I guess I have also talked my self into being afraid of the abalation especially with a quoted success rate of 50%. Have you had one? How was your experience?
What you need is a little support and we can give you that, we understand exactly what you are going through. Feel free to ask any questions and hopefully some members may have experienced something similar and can tell you how they coped.
See if the cardioversion helps you first, then I think I'd do whatever your electrophysiologist advises (I am assuming you are under the care of one). Your symptoms sound quite extreme and I don't think anyone here would have the expertise to advise, unless they've been in the exact same position.
Things that can help in general are: eating smaller and more plant based meals, losing weight (if needed), avoiding all foods that contain artificial additives, sweeteners and alcohol. Drinking more water, not giving in to the condition and doing your best to lead as normal a life as possible, slow deep breathing and above all not fretting about your condition - anxiety appears to feed AF.
Thanks, Jean. The frustrating thing is I eat plant based; don’t drink alcohol or caffeine etc The only factors that I am struggling on is weight loss- does not seem to matter what I do, I cannot get this to shift. Even do intermittent fasting with 2 meals a day most days. Also sleep. The AFib and other symptoms can wake you a lot in the night. Any tips on successful ways that people have found to shift weight/sleep very welcome.
We all know what the simple answer to shifting weight is don't we?
Try reducing the size of your meals and always stop eating once you feel full - you don't have to finish what's on your plate. No sweets, biscuits, cake or crisps, snack on fruit in between meals. Perhaps three smaller meals would be better than two. I know it's not easy, but you can do it you know.
Not that I'm saying I'm the perfect weight, but I thank god that I'm tall and can hide my fat stomach. Now those people on here who have met me will chorus "Oh no you can't".
I wonder if there's a losing weight site on Health Unlocked, but I'd sooner cut the size of my meals which I'm doing. If I can help you with any recipes, please let me know.
Shifting weight is easy, don’t eat and exercise but if only it was that easy!
A couple things you could try regarding sleep. Try slightly raising the head end by putting something under the feet of the bed. To help prevent thrashing around in bed, try arranging pillows into an inverted V. If you have a radio alarm clock, try something like ClassicFM on the timer. Do something simple like recall names of cars in alphabetical order or Counties in the UK or towns/villages in your county. May sound daft, but it’s an easy way to create a diversion which can be relaxing. Lots of sleep inducing apps are available. Avoid watching TV and using PC late......all easy and cheap to try!
You made me laugh! Will try the elevated bed etc I am a bit rubbish at reaching for a device at night and watching programs. Perhaps a better routine here to try 😀
They say laughter is the best medication 😂. Best not to watch anything at night but many of the free sleep inducing apps have sounds like waves, ebbing and flowing on a sandy beach, song birds tweeting in the trees, wind rustling through the trees.....they either send you mad or you go off into slumber land......most have timers so they are not on all night....
Here’s another one - a book that demands concentration! I have a couple of scientific books given to me by daughters who overestimate my intellect and a couple of pages of botanical or neuro science and I’m gone.....😴
Yes - there's nothing like a dull book to put you to sleep. Reading in French does it for me even if the content is not really dull. It requires moe effort.
Not eating and exercising are the advice of people who understand little of human evolution. For most of this time humans lived under conditions where for large stretches at a time food was scarce. The people who survived to pass on their genes to us were those whose bodies were the best at putting on weight in times of plenty and hanging on to it in lean times. Those whose bodies developed mechanisms to reduce metabolic rate once the body perceived a diminution of calories were the ones who lived to pass on their genes . The thin lizzies ( this ability to hoard calories is especially important for those who bear and feed children) died. Hanging on to that precious fat was the body's mission. So yes you can lose weight by not eating and exercising . But the body will do all it can to make you put it back on again ready for the next famine that is round the corner. This is why dieting is on the whole so unsuccessful . Getting round this evolutionary trait is a real headache .
What medication are you taking? If it is a beta blocker it could be exacerbating the weight/fluid problem. Before my ablation I couldn’t lose weight, then lost some almost overnight after my ablation and have stayed the same ever since, though I have to be careful. I was very impressed by watching a tv programme about the Fast 800 diet which kickstarts your weight loss but it is extreme at the start and maybe not suitable for someone who is already poorly. Basically a Mediterranean diet without the carbs!
Currently 10 mg Bisoprolol plus 5mg x2 daily apixaban
The consultants have always said that it would be difficult to lose weight. But then want you to lose weight 🤦🏻♀️ I have seen fast800. Was it Michael Moseley? Thought I would look at this but as you have picked up, being this poorly is not perhaps the best time to start but a more gentler approach like others have suggested for now. Then pick up again when more stable.
Take a lot of magnesium taurate. Small meals. Lots of water. Magnesium baths. Exercise. Take lots of various supplements ... Dr. Sinatra’s protocol. Drink riboos tea. Drink v8 juice low sodium. Try cardio version. No red meat (beef). Get your lifestyle into a routine ... repeating day after day the same things at the same times. Reduce stress. Most importantly, take melatonin just before bed 5-10 mg. Have fun!
When I was first diagnosed I joined slimming world. I found this a great help if not just for the weight loss but also the camaraderie of the group, it really does help.
I had been struggling for years not knowing I even had AF and putting everything down to stress at work. Then I collapsed out on a street and was rushed to hospital where I finally had a diagnosis and was told I needed an urgent ablation. I had it, and I’ll be honest, it was a difficult decision and certainly not an easy procedure but I did it and rarely experience any problem now. I’ve also retired which helped. If I’d had a choice I would have preferred a general anaesthetic but was sedated and partway through they increased sedation so I don’t remember past that point. I didn’t think it helped initially as I was so breathless and kept having ectopic episodes, but having given my body time to recover I rarely have experienced anything apart from if I miss my Bisoprolol. I have also changed taking it at night and since doing that I have not experienced anything.
Long story short, don’t fear it, they are exceptional professionals who know what they’re doing and wouldn’t do it unless they felt it would help. Maybe you would feel better if you felt you had more control over what is happening to you and perhaps starting a slimming club could be the first step to taking back that control. You also wouldn’t be in your own but with a group of people who have been there. And similarly, as with this forum, you are now with a group of people who also have been there. Small steps. It’s scary I appreciate that, trust me I’ve been where you are now, so maybe taking that first small step to take back control will enable all the other steps to getting better easier.
I wish you all the very best take care and stay safe and let the forum know how you’re doing by staying in touch.
Empower yourself.
Lindsay
Hi Diddyd, for what’s it worth, most of us have experienced the “I don’t know what to do for the best” dilemma. If you have access to an Arrhythmia Nurse, that would suggest that you have, at some stage, seen a Consultant. If you have seen a Cardiologist, that is great, but an ElectroPhysiologist (cardiologist who specialises in arrhythmias) would be better. You have already been offered lots of useful advice, however you appear to have a few conditions which may complicate determining the best route forward and this would be best achieved if you consulted an EP. This isn’t easy at the best of times so if it’s possible, a private consultation should cost less than £300, but you need to be wary of tests as these will be very expensive. The real benefit is that you should get a much clearer picture of the options best suited for your condition. As a know from my own personal experience, once you know and understand your problems, it becomes easier to determine the best solutions. Without having that knowledge, you are likely to be in limbo for a while and I don’t think that’s what you need right now. Hope this helps, lots here are more than happy to help you move forward.....
Thanks, FlapJack. Great name, by the way. I do have an EP but last time I saw him was a telephone consult that was not very productive. Will look into private options for at least a consult.
Thanks, John. I was on Soltalol which had no effect. Then Bisoprolol but that was not very effective on its own which is why I got put on Fleccainide and 10 mg Bisoprolol. I had read that vagal A Fib can be resistant to beta blockers and mine has all the hall marks of being vagal. Am taking water tablets to reduce fluid and hoping cardioversion does a reset for however long it gives me to decide about ablation.
The ECG s showed that it was the Fleccainide according, to arrhythmia nurses. Previously I have lowered the beta blocker right down to 2.5mg once a day but with current problems they have upped it back to 10mg. A year ago. I had the same problem as you where the beta blocker dropped heart rate so that was what prompted the move down to lower dose. Will look at Nebivilol. What made it a better fit? Are you UK based?
Morning welcome to the forum. Sounds like your having a tough time of it. AFIB can really ruin quality of life and I have had experience of this. Flecainide caused my heart to go into a life threatening VT and I ended up in hospital for 2 weeks. I had 2 cardio versions which only lasted for about 36 hours. I too was completely terrified of having an ablation but finally relented and it was done on 23rd Nov. Apart from a few normal side effects my heart has been behaving so I’m crossing my fingers that it’s gone ok. Speak to your cardiac nurse if you have one. Don’t give yourself a hard time about the weight and feel free to ask any questions in here. It’s a great source of support. I found that my AF is fuelled by stress do when it happens I distract myself by reading or housework or cooking. My sleep was truly awful too and I averaged about 4 hours a night if I was lucky. Since my ablation I have actually slept through the night twice?! Coincidence? I have no idea but long May it continue. I am 51 and felt like an old lady. I’m hoping that I can now start to feel normal again (whatever that is) lol .
You have had some good advice so far and hope that will be of benefit to you. We are all different and try and cope in a variety of ways to help our condition and to find the best QOL. Sharing on here is a way to help each other and ourselves so you have come to the right place.
I have had lone paroxysmal AFib for around 16/17 years and had my first ablation Sept. 2019 and that really helped. I’m 5 weeks into recovery of my second one and so far so good. I have only ever been on an anticoagulant and 2x50mg of Flecainide daily.
I too have weight and sleep issues but that’s due to medication I’m on for another condition. For sleep I play mind games and usually use the alphabet to find country names, titles of books, songs etc. My latest is drug names!
I paid to have an initial consultation with an EP and best £250 I’ve ever spent. He has done both my ablations on the NHS. Although my QOL wasn’t too bad my Afib and ectopics were escalating in the last 18/24 months and I felt quite poorly. As many will tell you Afib begets Afib and was certainly true for me. I wish I had taken action sooner.
I hope the cardio aversion works and is of benefit to you. Let us know how you get on. See how that goes and then decide about an ablation.
Thanks, Frances. Have seen that an EP in my area is NHS and at Nuffield plus was listed in top 10 best cardiologists in a list from some web site in last two years. Will explore this.
Mine was done by Prof Schilling at Barts. In my eyes he is a god!! Xx
I also went for months without PAF -just two episodes in Jan and July this year, far fewer than last. However, I was told by a GP that this means little-PAF can rapidly and unpredictably change its pattern, “that’s why it’s called paroxysmal”. I’m in PAF as I write this. I’m hoping it hasn’t gone persistent or permanent, but there isn’t any way of telling. I am resigned to the fact that I will probably have to have an ablation, although I don’t want it any more than you. As far as alternatives are concerned, I don’t think there is anything which is known to work. There is evidence that losing weight (if that is an issue) and stopping alcohol can lighten the burden of AF.
Goodness me poor you, you are suffering a lot. I’m glad u have found this forum, it was the best thing I ever did two years ago. None of us ate medically trained but I think a lot of us would say that an ablation could improve the bad quality of life you have, and that said what have you got to loose. Honestly it’s not the big scary thing we all worry’s out beforehand and then afterwards we think...oh why did I fret so much?.? And trust me in e you walk thru those hospital doors their professionalism whisks you away in kind of a surreal calm, you won’t have time to fret, and befire u know it you are in your way home looking forward .It’s a day out of your life after all.
I tended to get my AFibblips at night and ectopics too,I do think the best thing it too avoid stress easier said than done eh. And never eat late .
We are all here for you, were a merry band of folk.
Hi DiddydThe longest walk starts with a single step. Can you take exercise as in going for a walk in a regular basis. Doesn't have to be far but if you can do it regularly you will start to feel better. I am lucky. I married a lovely Welsh woman and I have lived in South Wales for just over 40 years.
The place where I live is criss-crossed by old railway lines that have been converted into community foot/cycle/paths, have gentle gradients and are very popular, especially at weekends, so I feel very unhappy if I can't get out for a walk.
Cardioversion is a good start. It is like pressing a reset button and is useful to see if your heart will reset, if only for a short period of time. If it is successful you will be eligible for an ablation. Been there, done that.
There are two reasons to have an ablation. One is to fix flutter. It is a very straight forward procedure and is commonly done after open heart surgery when flutter can creep in. Been there done that. The procedure was carried out as a day case and was successful.
Compared to open heart surgery it is very straight forward and you get a cup tea just afterwards. I took a cake in and scoffed it while I was sitting still waiting for the tiny puncture to heal over
The second reason is to fix an irregular heartbeat.
The EP will use a variety of high tech gizmo procedures to get a good look at your heart and to track down the source of the problem. Some of the areas of the heart are relatively easy to get at, some are not.
I have an irregular heartbeat that is triggered in a very difficult place to get at, where the wall of the heart is very thin and up against a major artery and an important nerve. I have been told that there is a 30 % chance of it going wrong. If I was younger I might chance it .
So what can you do to mitigate it? There are lots of sub -sites under the Health Unlocked website which can be accessed by looking for a grid of 9 tiny circles next to the symbol of a house top left for inspiration. Low carb healthy fat (LCHF ) is worth a look. Others look at lifestyle issues. The British Heart foundation has lots of information and recipes for the Mediterranean diet which it advocates.
I think it is widely agreed that alcohol, coffee , being overweight, stressed and eating big meals on an irregular basis can be triggers. If you add in sugary foods and a sedentary life style it doesn't help.
However the good news is that all these things can be changed. It takes time and a lot of 'No, I am not eating/drinking that'. It is a question of taking a bucket full of pills every day for the rest of your life or getting a healthy lifestyle going. Start after Xmas?
I think the only alternative drug they can offer at the moment is one that will cause me kidney/liver damage later in my life due to my age. They said if I was 80 then they would happily prescribe it. Good luck with your procedure, I hope that you get it soon.
Thanks for your very comprehensive answer. I love the outdoors and used to assess and supervise expeditions for the D of E. But due to a spinal cord injury have had mobility problems for the last 8 years that means I struggle. Instead I have found things I can do like 3 hours of Pilates a week with a physio and 20 mins a day physio based exercises which includes the large muscle groups to keep them strong. It is very frustrating as I spend a lot of time and effort with the lifestyle changes but seem to fall down a bigger hole. That being said the water tablets are starting to work and I have lost half a stone in 36 hours plus the pain I was getting in my kidney and liver has gone. I am grateful to you and others who have shared their personal experience of their journey and what it is like on the ‘other side’ of an ablation. It is helpful for me to help make a plan going forward
Another thing you can try is to get a pair of walking poles to spread the load a bit. If it all getting a bit painful you can lean on them and look at the birds...
Hi DiddydI was diagnosed with af early in 2017 and it gradually got worse until I had an ablation on November 5th 2019. I haven't looked back since. I had a few mild episodes of af within a couple of weeks after the ablation but then have been af free for just over a year now.
I can highly recommend having an ablation and should the af come back I would definitely have another. My brother has now started with af ( It is hereditary) and due to the covid is having a really bad time getting seen to. He is hoping to have an ablation as his quality of life is really low. Also my nephew has had a number of episodes of af.
Don't hesitate, jump at the opportunity to have an ablation. It should vastly improve your quality of life.
Hi DiddyD (couldn't help singing 'an actor's life for me', like the wolf in Pinocchio...)Great advice so far. On a simple note, whenever I hear people talking about night-time AF and vagally induced AF in the same conversation I think either sleep apnea or sleeping on the left side. The former is a known issue re AF, quite serious and needing investigation, and is often connected to problems with weight. The latter affects me badly. If I wanted to trigger AF I would just lie on my left side for a short while and it would appear.
These may not be issues for you, but you are obviously looking at lifestyle and these two things are key ones. Best wishes.
Yep, always when lie on left side. Have to lie this side though because of my spine. However, have been in AF for 6 weeks now so does not matter how I lie currently 🙄 Certainly food for thought. I had raised the sleep apnoea with the doctor but he did not pick up on it, I think mainly because they need to deal with this acute phase first.
That is a basin full, and the other symptoms need looking at by specialists. Crackling when you breath can be a sign of pulmonary toxicity (aka cryptogenic organising pnuemonia), so has anyone checked your blood oxygen (SpO2) and x-rayed your lungs? Low oxygen will affect your heart rhythm. Secondly, you need to be classified as clinically extremely vulnerable so that food and prescriptions can be delivered to you.
Thanks, John-boy. Had x ray and oxygen saturation 2 weeks ago when i was admitted to hospital. Nothing that they were worried about at the time but they wanted to crack on and restore NSR. However, have a 4 week wait for cardioversion and symptoms declining in meantime. Am in regular contact with arrhythmia nurse who wants me to stay at home unless I really cannot breathe as unlikely to expedite cardioversion. The water tablets have helped relief some pressure in body and the pain I was getting in my liver and kidneys so that’s a real positive.
I've recently seen a respiratory consultant who said that x-rays wouldn't show much detail and sent me for a CT Scan which showed damage to my lungs which was missed earlier. Now I am receiving treatment for bronchiectasis along with my AF treatment and feeling much better. I'd put this off for years as another consultant told me this was asthma. (I have this too). I've now learned my lesson - sort things out as soon as possible. I hope you can get over your problems and will feel better soon. Keep soldiering on
Hi Diddyd. Really, really sorry to hear of your issues and suffering. Don't let this carry on like this. A doctor(s) must get to the bottom of the underlying causes with detailed tests and examinations.Don't let the situation persist. Act now !
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Three and a half years AF free....and then.....
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