Drowning, not waving-: Hi everyone, I'm... - Atrial Fibrillati...

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Drowning, not waving-

southwell profile image
46 Replies

Hi everyone,

I'm a newbie. I am 53, fit, a runner, non smoker, non drinker (boring so and so) who was diagnosed with AF (flutter on admission to hospital - with some fibrillation later) in July 2015. I had a second episode on the 25 August. My heart reverted to SR on its own on both occasions. So why the note?

Well, I'm not really coping terribly well and I want someone to do what my mum would have - and tell me it'll all be alright.

Seriously, I've really struggled with the psychology of this thing, not least because I'm a writer and I found the betablockers I was first put on (bisoprolol) horribly invasive, making me feel like I was seeing everything through a thick block of glass. After this I tried diltiazem which was better but in time wrecked my tummy and then amiodarone which made me feel DREADFUL.

My consultant has suggested I get on the list for an ablation as this is my best chance to find a solution drugs free.

Currently I'm on rivaroxaban and that's it - which scares me a bit in case I have another episode - but which means I'm getting minimal thought disturbance at least. That said I feel far from myself - tired and headachy - but I wonder if this is another sign of the anxiety which grips me.

SO - THE ACTUAL QUESTION-

Have others struggled emotionally on getting diagnosed (I keep crying)? And have they got over it? What did they try? CBT? Shrink?

And will I ever be in a situation where I can run and play tennis again? Currently, I feel far too tired and a bit like I've been dragged through a hedge backwards, to do anything. More stress? On top of this, my brain feels turgid still and rather prosaic. Again, could that be worry?

Sorry to be so needy in my first post but at times I've felt on the brink of utter panic as I've wondered how to get any kind of toe hold as I slide down what feels like a sheer cliff face!

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46 Replies
T_costa profile image
T_costa

Oh my, I can totally relate to this. I see a therapist regularly, and I do CBT and DBT. The latter two have really given me the tools to learn how to cope when my heart is feeling a little weird. You should try those out!

meadfoot profile image
meadfoot

Most of us have been where you are and can slip back there from time to time when the jolly old afib whacks us again. I have tried psychological support and it has helped. I was referred to a clinical psychologist specialising in long term medical conditions. I found it very worthwhile.

Your medical team will support you to ensure you make the best treatment decisions ongoing and find the best treatment combo for you. Ask anything you want here there is always someone amongst us here to support. We all understand where you are now and can empathise totally.

Keeping posting and asking questions as you go along this journey. You are amongst friends here.

southwell profile image
southwell in reply to meadfoot

Well that made me cry, too. Thank you. Knowing I'm not alone is a real help and knowing too that people have been where I am - and I'm not just being a wimp, makes me feel better, also. May I ask, did you GP recommended the clinical psychologist? I'd like to contact one with a similar speciality.

CDreamer profile image
CDreamer in reply to southwell

I have a referral for clinical psychology 6 months ago. I got a letter 2 months ago to say there is a very long waiting list. I haven't heard anything since. It will obviously vary but I was told that unless I was actively suicidal - I will probably still be in the 'waiting to be on the waiting list' a year from now. Maybe be different in your area - do hope so.

This may help with info talk2gether.nhs.uk/

There are other alternatives - Go to

itsgoodtotalk.org.uk/therap...

Hope that helps.

meadfoot profile image
meadfoot in reply to southwell

You are not alone with this forum to hand day and night. All of us here are in your corner, we can all identify with your current position. But your current position will improve.

Regarding clinical psychologist, it was my amazing EP who suggested it would help me. He then wrote to my GP with a post app letter asking her to refer me specifically to a clinical psychologist specialising in health conditions. She did so and I saw a lovely person who saw me every week then two weeks then monthly for a year. Very helpful. She also provided me with relaxation tapes recorded in her own voice so it was like a further consultation each time I played them. If I need her in future I have to ask for another referral via my GP.

She fed back to my GP as appropriate and in agreement with me first if we thought I needed any medical support so it was a three way interaction when appropriate. I then reported back to my EP as part of my routine appointments. All very helpful and all NHS. I realise how fortunate I have been in this respect.

If you get your EP and or GP on your side it makes a significant difference. Hope this helps.

Victoria55 profile image
Victoria55

You are not alone! Been there and done that! My ablation was the best treatment I have ever received, after being on drug therapy for 5 yrs!! I was truly a wreck, i allowed it ( A-Fib) to interfere with my life-- saw a therapist for a year leading up to my ablation, which helped me so much! I have had two very short A-Fib events since my ablation in January. I don't panic anymore, I just center my thoughts and breath through them.. wish you all the very best, and remember you are not alone🙏🏼

southwell profile image
southwell in reply to Victoria55

Thank you. Wow. I can't believe the difference understanding makes. And the hope it brings.

Mazza23 profile image
Mazza23

I think your mum would have given you a hug so one is heading your way lots of help on this site from lots of great people take care of yourself xx

pottypete1 profile image
pottypete1

My AF started over 25 years ago.

It came out of the blue and they kept me in hospital for a week.

I had problems with my personal plumbing as I was bed bound on a heart monitor. This did not help my state of mind.

I felt so frightened and this made me very depressed and this was not helped by a Consultant who made me feel very small with his terrible attitude towards me. I think he was thinking that as I was a grown man I should pull myself together.

Because for so many years my AF had been so difficult for the medical profession to resolve when 10 years ago I was offered an ablation I thought that my troubles were over but as many will know I have had to have many ablations.

The most recent 2 weeks ago Thursday seems to have been successful so far so right now I am feeling very positive.

However I can tell you that numerous times over the years I have been driven to tears especially when I developed acute Urticaria following 3 of my ablations.

Welcome you will get lots of positive support from members of this forum as you are not alone feeling like this I can assure you.

Pete

secondtry profile image
secondtry

Have you discussed Flecainide with your medics - old tried and tested drug, less side effects. Also, AF may be kicked off because you are overdoing the training/exercise - although you will miss it try not running/other training for a while, maybe replace it with a brisk walk with Nordic poles like I have done. You have to get your life back and stabilised first and then maybe go back to your old routine or a new routine you may discover you like better. Good luck!

CliveP profile image
CliveP

1/ Get on list for ablation.

2/ Stop taking drugs.

3/ Start running again.

southwell profile image
southwell in reply to CliveP

This one made me smile! So do other people manage on no drugs or just on an anticoagulant? My EP said my best hope of avoiding drug side effects was to avoid the drugs and if I had an AF episode to try and sit it out. If I didn't auto convert - and I'd given it a good wait - get to my GP or A&E.

Zozzy profile image
Zozzy in reply to southwell

Hi

Like you I'm a runner, 54.

Until my ablation last week I made do without the drugs - was on bisoprolol (beta blocker) for a couple of weeks and hated it - it slowed my heart rate to a crawl and made me perpetually tired.

3 months ago I went to a consultant who told me that because I don't have other risk factors I could stop - which was much better and I was able to run again.

For 6 months i simply lived with the AF (which didn't generally impact me unless I was trying to run) - a choice I was able to make, but not everyone can.

However my running is important to me, and I wanted to go for an ablation in order to give me a chance to continue to do so (the AF was becoming more frequent and invasive to my running).

It's too early to say after just one week whether the ablation was successful. I figure that if it's not I haven't changed my options: I may be able to have another (many people do) or I can give in and live with it, or I can go for drugs (many people do). At least I'll have given it a shot.

For the ablation my consultant put me back on Rivaroxaban (anti-coagulant), and I'll have to stay on that for another couple of months. I can't say I've noticed any side effects from that.

I haven't been teary, other than in the first few hours after I woke up after the ablation, and I think those were tears of joy.

I think we all find our own coping strategies. For me it's to turn off the mental feed (the constant questioning and worrying) and focusing on stuff I can change. I don't think I'm suppressing anything, just ignoring what I can't change in favour of what I can, in order that I can maintain a positive perspective. I accept that may risk a certain amount of numbing, but I choose that over risking the physical knock on effects of a low mental state.

On a lighter note, there's one mental feed that I've never been successful in turning off (maybe that's a consequence?) - what I understand is commonly called "earworms". For that my coping strategy is to change them often so as not to get too irritated.

Steve

southwell profile image
southwell in reply to Zozzy

Cheers Steve-

Appreciate that!

WendyWu20 profile image
WendyWu20

AF can be a pain in the backside for many reasons, and if you've previously lead an active life then there's a grieving for losing the the person you once were and the life you once had. Then there's the stress of experiencing heart symptoms and fearing the worst, plus the awful side effects of meds and feeling powerless if not able to effect a cure with lifestyle changes. So anxiety and depression are understandable in the best of us!

Addressing the emotional side of things depends on what you personally resonate with. I worked as a psychologist and know that CBT is great for some people. However, my own personal journey involves a more spiritual approach, so I use daily meditation in an attempt to uncover underlying negative emotions and unravel them.

There are no rights and wrongs - try to find a therapeutic approach that just feels comfortable for you and where you're at right now. Giving yourself a hard time for being 'weak' only exacerbates the harmful effects of stress chemicals, so try viewing all emotional responses as signposts instead. Our emotions can be v useful in making us aware of imbalances in our life. Self-attack is something we all do out of habit and we're usually not aware of it, but I'm finding that over time it's getting easier to catch myself doing it, stop, and replace negative thoughts with positive ones of self acceptance.

Trust in your own innate ability to find appropriate support, a useful mentor to guide you gently along the path of self growth and healing. And make use of this online community - there are lots of lovely people on here who know how it feels to have AF :o)

southwell profile image
southwell in reply to WendyWu20

Thank you. A most thoughtful response. I will act upon it!

Mike11 profile image
Mike11

There's no universal one drug fits all for AF, or indeed many other conditions. I would have thought your consultant should have tried you on verapamil which usually doesn't have the mental side effects, though it can cause leg swelling so you need to sleep with your legs raised (put a pillow or two under the mattress)

As for running and tennis, you can do them but you'll probably never be as good as you were again sorry. Put it down to getting old and enjoy what you can do. I do a lot of walking but others may prefer other things of course.

jobristol profile image
jobristol

I too am/was/am a runner, cycle and attend spinning classes. I was diagnosed with AF in June 2016 after suffering breathlessness whilst running. I felt very down after diagnosis, wasn't able to run or do anything. Over a year later, cardioversion that lasted 2 weeks, Amiodarone that made me feel dreadful (stopped it in March), AF turning to flutter, I am on waiting list for flutter ablation. I am feeling much better than I was which I think is partly due to the fact I now attend spinning classes again, doing just what I can (instructor is aware and keeps an eye on me). I also run a little, well more a walk/run and last Friday went on my first cycle ride since diagnosis, it wasn't easy but I took it at my pace, slowly. Coming to terms with it isn't easy but you will and I urge you to try and exercise if you can, even if just walking it will help, some days it will feel easier than others. It isn't easy, I know what it's like when you've been fit and then can't do what you previously could and I totally emphasise with you, you will get there though, so hang in there you are not alone, everyone on here will be there for you.

southwell profile image
southwell in reply to jobristol

Cheers Jo - that is really encouraging. A hard path, clearly, but possible. And that's all I want at the moment - a bit've hope!

jobristol profile image
jobristol in reply to southwell

There certainly is hope, lots of it. Accepting that you can't run as fast as you did, or cycle as far and as fast is very very difficult, but doing something is better than nothing. Keep in touch on here and let us know how you are doing, we're all here to give support and receive it, remember you're not alone.

in reply to jobristol

Hi Jo, do I gather that you're from Bristol? If so, I'm John from Bristol, fellow cardio bunny, loved Spin classes but I get too carried away: "dance on those pedals, pull up on the straps!" Our fitness becomes our identity - it's who we are - so it's a kick in the teeth when something threatens to take it away, when even a missed run or Spin class has been a downer. You are doing great and so typical of people in this forum and the Different Strokes forum: we don't give up, we don't stop trying and we don't stop helping others along this road.

John (from Bristol !)

jobristol profile image
jobristol in reply to

Hi John, I'm from Bristol. I remember you replying to my very first post on here telling your story of being on amio which I took great note of and it helped a great deal especially when I was feeling so bad on it. It was when I stopped taking it that I was actually able to start running again and spinning classes without fear of falling off the bike as the amio was causing chronotropic incompetence and my heart rate would drop like a stone, so I now have amio intolerant on my notes (thank goodness). Obviously can't run at any real pace, not that I did anyway and can't go as hard at spinning as I could but I'm doing it without fear now and that makes a great difference. Have also just started Pilates which I find good.

You also seem to have coped really well with all that you have been dealt, hope you are well and thank you for that reply to my first post.

We all have to support each other on our journeys!

Jo

in reply to jobristol

Hi Jo, I'm so pleased that my post helped and, you're from Bristol too (I've lived in Bristol for 50 years so I think that I'm a Bristolian). My favourite Spin classes were at Horfield with Kath and later Les. I know what you mean about your heart rate dropping suddenly and feeling like you're on a road bike and just ridden into a hedge. Great dance tracks and a properly trained Spin instructor and as Les would say;"dance on those pedals" and "ride it like you stole it!" I like Pilates, particularly with a Pilates Foundation teacher, but I'd like to get back to yoga. That said, my former yoga teacher - Rachel of Yoga for the Soul - was and is still an influence.

Thank you for your kind reply; may you be well.

John

Rellim296 profile image
Rellim296

Getting onto a different plateau is the answer, be it via change of medication, better control of AF or having a more relaxed attitude.

For me the first two have transformed my life and given me the third. I'm no longer the cross, picked-on, aged person I felt I was four years ago.

I'm not ruled by my medication any more either and happy with Rivaroxaban.

doodle68 profile image
doodle68

Hi Southwell :-) you say...

[Quote =Have others struggled emotionally on getting diagnosed (I keep crying)? And have they got over it? What did they try? CBT? Shrink?]

I am sure we all have felt that way to some degree. I have had PAF for years but chose to ignore it until the episodes became frequent ,prolonged and severe. The reason I chose to ignore it was because I am elderly, live alone miles from anywhere and could see my Independence slipping away if I said anything not realising I was at high risk of a stroke by not doing so.

Once diagnosed I felt my life as I know it was over. But there was light at the end of the tunnel. I am on Apixaban to help protect me from strokes, a beta blocker Nebivolol which has brought down my high blood pressure and heart rate and has few side effects and I have changed my diet which was good to begin with but is better still now being mainly plant based. I am also steadily losing weight, 10lbs so far. So with the help of the right medication my PAF is under control and my quality of life good.

I still walk 3 miles a day every day and garden growing some of my own fruit and vegetables.

I now see AF as a timely warning, a second chance and I feel one of the lucky ones . I could so easily have been one of the thousands with silent AF who do't get a warning and have a stroke instead .

Curlychriscoach profile image
Curlychriscoach

Many of your points resonate for me. 58 fit healthy triathlon participation (was ok but never won anything), AF very regulalrly for a year before consultant suggested an ablation. Done in January and recovering well. A couple of minor blips, mine brought on by stress and alcohol.

I decided to set a goal of some exercise every day this year before deciding what to do next year. It took a while to get my head around the feeling of "not being a triathlete any more" and losing that identity. I am a triathlon coach so went through the "physician heal thyself, and "how could I let this happen to me" voices in my head.

My approach, noting everyone is different:

Use this great community for information and learning, including being told off on occassion

Small and often exercise, including walking to the end of the road and back... now riding regularly, swimming a little and having put quite a bit of weight on running very carefully.

Reading a lot... The Haywire Heart, great information for sport and knowing there are elite sport people dealing with the same puts me in a special club

Listening to Sanjay Gupta YouTube vlogs - so much clarity and common sense

Oh and asking my Mum to tell me it will be all right... she does!

southwell profile image
southwell in reply to Curlychriscoach

Brilliant! Thank you-

thegranger profile image
thegranger

Hi Southwell

Sorry to hear you are struggling with the emotional impact of your diagnosis. I thought i would share my story with you. There are parallels.

I was diagnosed with AF in my mid thirties. I was an avid outdoor person. Mountaineering, rock climbing, mountain biking. I was at my prime fitness. The diagnosis came as a huge shock to me. To be honest, I denied its impact. I guess I was fit enough to cope with it and overcome the episodes. Episodes initially were short lives, maybe lasting several hours. No-one gave me much advice. The consultant at the time didn't offer any medication other than warfarin. As time went on, the episodes became more frequent and longer lasting - running into 24 hours plus. It was then I did start to feel the impact on physical activity. I can only liken it to a tight belt around my torso sucking the life out of me. Very breathless and my pace would slow right down.

Cut a long story short, in my early 40s it finally got the better of me and my stubbornness. I ended up in hospital as my lungs had began to fill with fluid and my body was in shut down. I had been in permanent AF for a month previously. They tried everything. Beta blockers, amiodrone, cardio versions, ablations. Nothing touched the rate, which was racing away at 170 +. I could barely walk 10 metres without needing to sit down and catch my breath.

So how did I cope emotionally? Well,, I guess, when at rock bottom, there's only one way to go. I can say that I wished I sought decent medical advice much earlier on. I found this forum to be a huge help. For example, I never realised that I could request an electro-physiologist to take my case on. Once that happened, my journey to recovery became one of hope rather than despair. Take the medical interventions with a sense of positivity and courage. It might just be the one that works for you. Try not to get too down with failure. The road is long!

They eventually put a pacemaker into me. Whilst I struggled with the enormity of having an artificial heart, it gave me the lease of life that I desperately craved. It stabilised my heart. It's allowed me to build a base fitness again. I still struggle - for example - climbing a steep slope. I will likely never manage a Dolomite via ferrata again. But I have been blessed to have had that experience. I can hill walk and mountain bike. I never thought I would get back to that. And I love every moment. The NHS is such a wonderful service to have. Stay positive. Keep seeking solutions and treatments. I hope you find the pathway to your recover. Take care.

jeanjeannie50 profile image
jeanjeannie50

Hi Southwell, mother Jean here - You are going to be alright, so you can stop that needless worrying right now. (Gives you a long calming and reassuring hug). We are all here to take care of you now, we understand totally all of your fears and welcome you to the comfort blanket of our forum.

In all honesty I can say the thing that helped me most to cope with my AF was the caring support and advice I received right here. So welcome to our fold and worry no more, you are now one of a very exclusive group only open to AF sufferers. What a great bunch of people, look at all the replies you've had so far.

Best wishes

Jean

southwell profile image
southwell

Wow. Just wow. (He sniffs!)

Yachtgirl profile image
Yachtgirl

Not waving but drowning, Stevie Smith says it all. Some times are bad, they will improve. Three nights ago I was in hospital on the monitor again overseas and feeling anxiety plus about the situation, not again. I am struggling again and again I will overcome it. Thinking of you.

Hi and welcome. The short answers: you're going to be fine, don't decide to train for an ultra-marathon(!), keep taking an anti-coagulant, as a runner Bisoprolol may not be right for you, for some including me Amiodarone is the "devil's potion". Longer questions and answers. Is your AF related to your running? Is your 10km time 42 minutes or 60 minutes, or something in between? Have you run for several years? What is your resting heart rate? Do you use a heart rate reserve calculation such as Karvonen? Do you do any other form of exercise?

If AF isn't triggered by exercise then there shouldn't be a problem with continuing exercise provided it isn't long steady state, HIIT, or hard Spin classes. If exercise is a trigger then you need to dial back the intensity or time but no need to stop. People who do cardio exercise usually have a low resting heart rate that drops even lower when they're sleeping. That can only be determined by monitoring with a recorder for a minimum of 24 hours. If you have a slow heart rate it's unlikely that you should be on a beta-blocker. If you do yoga, avoid headstands, shoulderstands, the plough and any pose that puts your neck in tension or a forced position. If you do Pilates, do a V-sit for the One Hundred and not a slight curl-up. Don't lift heavy weights and don't hold your breath. Mentally, look outwards and don't focus on the AF. As a writer you could email Amy of Health Unlocked with your story and, from time to time we get researchers on this forum looking for interesting back stories.

Where does this come from? I was and am a long-time cardio bunny with exercise induced AF. I can't take beta-blockers as my heart rate drops to the 20s when I'm sleeping and can pause for a couple of seconds. Amiodarone and Dronedarone placed me close to death. I was advised not to take an anti-coagulant, then I had a full stroke. My Consultant Neurologist treated someone who had a stroke during yoga and she has advised me what exercises I shouldn't do, but is happy for me to use a turbo-trainer or rowing machine. I'm the secretary of a nature conservation group with lots of admin throughout the year and, plenty of physical work clearing scrub with my fellow volunteers during the cooler months. For a while after the stroke I couldn't remember how to use a computer and, the Council who own the nature reserve wouldn't permit me to be in the nature reserve; those things required some perseverance to get past. Last December I was in a short video about AF, anticoagulation and fitness through a contact in this forum.

You are welcome in this forum and together we all get through this, so don't get down as you have a lot to offer this forum and the wider public.

John

southwell profile image
southwell in reply to

Wow John-

That's some story. Thank you for sharing it with me. It's extremely inspiring. And helpful, too. My EP has suggested that the one drug left to try is sotolol but that's a beta blocker, too, and I suspect might cause the very issues you describe.

My resting pulse is 48-50. Sometimes 52 when I'm training less. But I'm no speedster. Best 10K of 44mins but many years ago. Now I'm an 8.45 minute mile man. But I have been running for a good twenty years after some serious rugby and cricket. And in the last two years I've started some HIIT classes and spin, too - but I have found these hard - and stopped them more recently (just before my first 'episode'). Of course at 53, I wasn't about to admit that I couldn't keep up with a 30 year old (and younger!). I liked to do some sort of exercise 4-5 times a week, for about 40mins to an hour. Now, nada - except walking which I can still enjoy!

Anyway, when first on bisoprolol I found my pulse went down to 39 and even when the dose was minimised to 1.25mg, I was usually around 45, sometimes 42, and above all struggling whenever I needed my heart to beat a bit faster - as it was capped! So when I went to the gym - which I tried about twice, on a cross trainer, like a little old man - it still proved too much, bringing on an awful dizzy spell where I thought I might faint.

So your advice is awesome. And helpfully detailed. I have just re-registered for my Pilates class so I'll bear in mind what you said! I'm also massively encouraged by your return to mental acuity (from a dreadful position) and your ability to stand hard physical work. This is what I want. I can't bear the thought of not being able to be active (aside from the sports stuff) and to garden and indulge in a bit of DIY (and I do mean a bit!)

Thank you-

PS - never heard of karvonen!

in reply to southwell

It's great if I can be of some help. Many people have an issue with beta-blockers and you need to speak to a clinician who understands that cardio training produces a low heart rate. You also need to have a recording monitor fitted to see how your heart performs when you're sleeping. You may also come across a Bruce protocol treadmill test; we can chat about that if it arises. I mentioned that I don't take a beta-blocker and consequently I monitor my heart rate when I'm rowing on the Concept 2, as it's easy to drift up from 160 to 180 (I'm 70) but under medical test conditions I've hit 230bpm on a treadmill. My output power in AF drops by around 10%, not the 30% in medical text books. I loved hard Spin classes and was often called to the front to ride alongside the instructor, a former Olympic squad 400 metre hurdler with Chris Akabusi.

For some days after the stroke I couldn't find the bathroom in our small bungalow. I'm blind on the right-hand side after the stroke so I can no longer drive unless the DVLA relent, but life is good despite some short-term memory loss. The short video was funded by the makers of Apixaban - that I take - and is currently circulated to clinicians in the UK and USA. It's embargoed for public use at the moment but, it would be useful in the public domain as it shows me cutting back scrub with tools that would easily sever a finger and, during a turbo-trainer session; questions that regularly arise with anticoagulation. When the embargo is lifted I'll contact the forum administrators to see if I can post a link.

I've sold my ViPR and the 20kg kettlebell but I have a Concept 2 that I row between 10km and 20km per week. I recall that Andrew Marr had a stroke trying for a 20 minute 5km, so I no longer do a 22 minute row at level 10 followed by 4 x 5 minute sets on a Marpo rope machine in the gym.

There are several cardio bunnies in this forum particularly cyclists. At the risk of starting a 220 minus your age heart rate discussion - I'm not a proponent - Karvonen is a formula to calculate maximum heart rate (MHR) taking into account heart rate reserve (HRR). HRR is the age adjusted difference between the resting heart rate and MHR. The Metzl variant is biased towards older, experienced cardio bunnies who would otherwise be saddled with exercising at a low feart rate.

Great that you do Pilates. My first Pilates teacher was a professional choreographer and ballet teacher who required us to do roll-downs in plié and other ballet exercises: I should explain that I was the only man in the class and a bit self-conscious: that was then, see me now :-). Pilates Foundation teachers are great, but I've come across teachers who've done a one day course and don't have too much idea. I used to do Body Balance which is a great mix of Tai Chai, yoga and, core work that tips it's hat to Pilates and all set to music.

There's lot that we can chat about in this forum and, people with a wide range of experiences, views, and symptoms. The important thing is that we all come here to share, contribute and support each other. Namaste

John

southwell profile image
southwell in reply to

You are one fit dude! And I have taken note of all you say. Thanks John. I'm seeing my EP and GP over the next week and I really want to nail the whole drugs thing - because while the Rivaroxaban, I'm happy to stay on, all of the others do seem to affect me adversely so if there's no additional risk in leaving well alone, that would be my preference.

in reply to southwell

Good luck with the consultations. Come back and let us know how you get on.

Adiepie profile image
Adiepie

Talk about resonating! I know how you feel (58, reasonably unfit but trying) and then this happens! Cardiac issues (suspected MI, but probably just very bad AF) 6 days in hospital to sort it out. How the world changed! Suddenly I'm a person with heart issues!! Diagnosed with PAF, can't stand bisoprolol, so on ACE inhibitors and calcium channel blockers. Feel like the world is full of treacle and my heart "keeps feeling funny"

Due to have a cryo ablation on Friday in Leeds, so hoping this will sort out my condition - also have syndrome x (micro vascular angina), don't think that cryo will affect this, but hopefully reduction in medication post ablation will help?

Just remember, you are NOT on your own - reading the posts on this site show that there are many people feeling how you do, but more importantly, they have come through it.

In the words of the song, "don't worry, be happy!"

Dodie117 profile image
Dodie117

There is a school of thought that the earlier in your af journey you have the ablation, the more successful it is. I opted for this, as opposed to trying different drugs. I was having episodes 4 or 5 times a week lasting 5/6 hours. I had the ablation in Nov 2013 and had a rocky 5 months (lots of arrhythmias/ bumps) but then all settled down and I have been af free since then. I am 68 and can walk, dance, garden and do normal stuff for my age - and more.

So lots of hope going forward.

Good luck 🍀

Ksusie profile image
Ksusie

It is a bit daunting to begin with. I have AF and I did have flutter. Similar age 55. My cardio pushed for me to have the ablation. Best thing I ever did. Now not so tired and back to almost normal. For my AFIB I take fleccanaide. 1 tablet twice a day easy. It keeps it regular with no side affects. Hope this helps. Also if your cardio is not for you try another. I found mine via google and he is great.

southwell profile image
southwell in reply to Ksusie

Cheers - great advice. Thank you.

lacolyn profile image
lacolyn

I'm 69 in a month's time. I've been very active my whole life, running, mountaineering, tennis, skiing and more. I had a couple of bouts of severe AF but spaced out by several years. In between I had a few futters but nothing too serious and was doing sport all the time. Only fairly recently did I have an ablation and so far it's been good. I stopped bisoprolol and flecainide 3 months after the op and a week or so later started feeling I wanted to get back to an active lifestyle. That was about 3 months ago and I generally feel very fit and and am back to doing everything as welI as I expect to at my age. I tend to push the boundaries. So there is hope, don't worry. I feel it's really problematic after diagnosis and being told you could have an operation. Psychologically it's tough. You think it's "more serious than it is". I certainly don't mean its not serious, of course it is, but we immediately believe it's potentially the end of life as we know it and we could keel over at any moment, and that's just not likely. It takes a little while to get it all in perspective. I'm still on blood thinners and didn't ski last season as my Cardio advised against it. As an aside,I had a hell of a job getting my money back on my season ski pass! Next season I suspect I will still be on blood thinners but I feel more confident now and, although there is a small risk, I shall be skiing again. I'm also keeping my fingers crossed that all keeps going well because at this age things are not going to get better in the same way they did when I was 30. Incidentally, I also write and perform in an acoustic duo, and my creativity did take a bit of a dive for a while but post op and post drugs it's far better. But, see you on the slopes! Good luck.

southwell profile image
southwell in reply to lacolyn

That is a fantastic and inspirational reply. Thank you! I'm going to file it somewhere I can refer to it over and over!

lacolyn profile image
lacolyn

As an aside... I stopped the bisoprolol months ago. Pre last AF I was on a beta blocker for my occasional migraine and that seemed to work. As did avoiding caffeine completely. BTW ablation can cause temporary migraine and I had 2 weeks of the them after the op.

I didn't want to double up on the beta blockers when I had AF so stopped originals. 3 months after the ablation I stopped all heart meds on advice of the doc. So, should I start the other beta blocker again? I decided not to, give it a go. However, I started bisoprolol again a week ago as I misguidedly thought it would keep me calm during a short period I was expecting would be stressful for me (yes I know, but I weakened and really didn't want to upset other people during their visit!). For 2 days it seemed brilliant but on day 3 I was sluggish and grumbly tummy and needed to lie down. Perhaps not the bisoprolol but it felt like it. So, no more! Perhaps I was sluggish and dopey and slow al the time I was on meds but I do know I got used to them after a while

Yesterday I got on the road bike, which really does need a granny gear (!) and did 90 minutes in the mountains with over 400 metres of ascent. It needed a lot of will power to get to that col and I stopped many times to get my breath but it felt good and the views were amazing as always.

Courage mon brave. Colin

southwell profile image
southwell

Thanks Colin. I'm doing my best but I have to admit I seem to have recourse to the white flag more often than I'd like! I'm trusting that time (and friendly words like yours) will gradually settle me.

As to 90 minutes in the mountains - bloody hell - you need a medal - or possibly certifying. Good work! I'm going to start more gently with some Pilates tonight!

gatorvg profile image
gatorvg

the only good thing is a-fib will not kill you, I slways keep that in the back of my mind. But amiodarone will hurt you get off soon as possible. I take xanax when i get panic attacks from a-fib ask your doctor if you can take it. I have had a-fib since 2011 it does get better your body and mind gets use to it.

cherrypicker profile image
cherrypicker

like you I was fit non smoker,non drinker etc when I had my first af episode, actually riding a horse and thought id had a heart attack! in the 10 years since then ive had 2 ablations, the latest being the croballoon one, I'm pleased to say that so far so good, had the odd flutter but only a few seconds, feel 100% better both mentally and physically, I too felt depressed like you, it is a really depressing situation when outwardly you look normal but inside its just s...t! and you are waiting for the next episode. My only trouble is I have high blood pressure which keeps creeping up despite medication, I still exercise and hope to start tennis again in the spring, I am not on anything bisoprolol (a horrible drug) causes anxiety etc anymore, but only hbp lisinirpril and warfarin. I just hope the cryoballoon treatment lasts as long as possible (I'm told I can have another 2) and wish you all the best - cherrypicker uk

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