Exercise tolerance is near zero: To add to my... - AF Association

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Exercise tolerance is near zero

Ppiman
Ppiman

To add to my other post, I saw my GP yesterday as my heart rate from my atrial flutter seemed rather stuck at 105bpm (I'd had half a day at 70 bpm). He decided to increase my bisoprolol from 5mg to 7.5mg / day. I took an extra half when I got home, and all went well, with my heart rate falling over the afternoon and me feeling quite a bit better.

Then came the evening, when we went to see our one year old grandson. He's totally gorgeous of course - but I'm afraid picking him up, walking him and generally playing brought on a high heart rate, going up and down to 145. I coped but the night wasn't pleasant and I toyed with phoning the CDU at Glenfield, but didn't. Shall I, shan't I...

I just thought I would write to ask of others' experiences at exercise tolerance. I just don't seem to have any. It's hard to cope with the symptoms without panicking since they come and go with such rapidity - one minute I'm telling my wife I feel a bit better, then the next I'm feeling awful. Last night I had dull, if mild, chest pain along the sternum to add to the usual weird and horrible inner feelings that are so hard to deal with.

22 Replies
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What you have described is typical of how we suffer with AF, one minute feeling well and then the next or heart rate all over the place. I used to find my heart rate going up and down really draining, in fact even when it went back to normal I would still feel drained for a few days afterwards.

The following is what I've discovered after 14 years with AF:

As soon as you feel the slightest odd sensation in your chest from your heart, start doing deep breathing until it calms. Do not take your pulse or dwell on it. If you take your pulse and it's high, well your mind will make sure it keeps at that rate.

Wishing you well.

Jean

Ppiman
Ppiman in reply to jeanjeannie50

Thanks - it’s just such a tough thing to deal with at present. I mean - not even being able to play with a toddler.

I’ll try the breathing - in fact I had been doing it but forgot last night. I’ve only been checking my rate to see if the extra bisoprolol was working not out of anxiety. My GP yesterday told me that flutter was more difficult to treat with drugs and seemed to produce worse symptoms in some patients.

Is your fib or flutter, Jean?

jeanjeannie50
jeanjeannie50 in reply to Ppiman

I've had both, but at times found the flutter more debilitating. It once stuck for a day at 150 and I felt dreadful, went to doc who said go home take yet another Flecainide tablet and if it doesn't work go to A&E. Fortunately it did work, but it was a day I'll never forget! I've spent weeks in hospital with my heart misbehaving. It's a horrible condition to have, but there's so much we can do to reduce our symptoms and I think I've just about got them all in my head now. It's taken a long time to get here though.

Jean

Ppiman
Ppiman in reply to jeanjeannie50

Thank you Jean for replying. It’s so helpful to read of your experiences. Flutter seems far less common. Two older friends had AFib and have quite different and less overall problematic symptoms - although I gather they might be lucky.

The hardest thing, I’m finding, is deciding that the chest sensations and pains aren’t going to lead to anything suddenly worse. That is very hard. That and the feeling that you’re okay one minute and not at all okay the next.

jeanjeannie50
jeanjeannie50 in reply to Ppiman

Unfortunately that anxious wondering you do about your heart will feed your problem and make it worse. I was the same when my heart first started misbehaving, I couldn't put it out of my head and was constantly monitoring what my heart rate was. We can only do our best, by eating healthily and getting regular exercise.

Whatever will be will be and worry will only make matters escalate. I just hope my end of life will be quick when my time comes, but I'm not going to think about it! The sun is shining and I'm going out to enjoy it.

Have a lovely day.

Jean

Has anyone spoken to you about an ablation? They're much quicker and easier than a fibrillation ablation, and higher success rate (90% cf 70%). Mine only took about 40 minutes.

Also, you could ask about Diltiazem instead of Bisoprolol, it limits your maximum HR in much the same way, but it has less tendency to knacker you exercise ability. The down side is that some people have a problem with it causing their feet to swell, but you won't know if you don't try it. I had problems with feet swelling, but opted for a lower dose rather than have Bisoprolol making me feel fatigued.

Ppiman
Ppiman in reply to ectopic1

Thanks for the tips. I’ve just seen a EP cardiologist who felt ablation was the best option (mind you, isn’t that like asking a coalman which is the best way to heat a house? 🤔).

The bisoprolol isn’t stopping the flutter at all so it isn’t a worthwhile option as the flutter has wrecked my exercise potential completely so far. There was also some heart block on the ECG which might be being caused by the beta-blocker, too. That also limits other drug options, he said. The ablation needs a general anaesthetic, so a day in hospital or even overnight.

ectopic1
ectopic1 in reply to Ppiman

If he thinks you'd benefit from an ablation I'd go for it. My EP said that flutter is less amenable to drug treatment than fib, but more amenable to ablation. He uses sedation rather than a GA because patients recover quicker. There was no difference from my perspective, the sedative might just as well have been a GA for all I felt.

My basic problem is fibrillation, but I had to go on Amiodarone at one point because Flecainide was causing flutter. The flutter ablation enabled me to get off the Amiodarone and go back on the Flecainide.

Ppiman
Ppiman in reply to ectopic1

You’ve been through the mill a bit, it seems. The EP told me that AFib might still occur later and that they don’t know why that is. Many don’t get it, he says.

Aside from waiting and seeing, I think ablation is the only worthwhile option for me since bisoprolol doesn’t seem to he doing much at all - although this has been my best morning and I’ve even pruned a couple of large bushes. That doesn’t sound much but it’s given me a chunk of confidence.

He told me other drugs were likely no-nos owing to the appearance of the heart block on the trace.

ectopic1
ectopic1 in reply to Ppiman

I'd been dithering for about a year, but it was the reputation of Amiodarone that pushed me off the pot eventually.

Ppiman
Ppiman in reply to ectopic1

So you still have AFib, then - but controlled by flecainide?

I’m disappointed that my aorta seems to be in flutter either all or lots of the time whatever I do. If I do anything physically excessive, I feel I’d soon reach another tipping point and would see 155bpm again. It seems that I just can’t cope with that at all.

ectopic1
ectopic1 in reply to Ppiman

They originally offered me a fib ablation which would have got me off the meds altogether, but when I agreed to it they changed their mind and did a flutter ablation so I could switch from Amiodarone back to Flecainide without it causing flutter.

My tolerance for activity is zero when in flutter (until the last time I had it about 8 weeks post 5th ablation). I cannot even climb a flight of stairs without feeling faint and breathless, cannot kneel to change my daughter's nappy, bend over to put crockery away or crouch to tie my own shoes.

When stable, I can walk briskly on school runs pushing a pushchair, carry an 11kg baby around (not much of a baby now) and do lifting walking carrying "nipping" upstairs and so on.

"Back in the day" ie 5 years ago I was walking between 7-10 miles a day on a 12 hour shift at work, and between 5 and 17 miles once a week on a "day out" on my days off. I'd like to think I can return to those levels.

I managed a little light hoeing in the garden today - but the flutter was there throughout with 75-145bpm (mostly around 100) and, before long, chest discomfort arose as ever. It’s not a harsh “pain” at all but a hot, itchy dull discomfort, located centre-chest. that, when this first happened five weeks ago, I put down to my hiatus hernia. But - a week ago, walking up stairs, it returned and I ended up in A&E.

Like you, walking up flights of stairs, lifting a child or, especially bobbing down for an extended time (playing with our grandson) seem no-go areas.

I’ve been offered ablation and I think it’s my way forward as, unless NSR will naturally return soon, I’m stuck.

NSR may return naturally, it did for me once or twice without DC cardioversion or ablation, on IV medications or orally but those instances were rare and I've racked up 5 ablations (2 for flutter) and 22 cardioversions as a result of other means not working.

I would seriously consider ablation as it would treat the cause. They will always look at this as an option where your Quality of Life is affected such a degree (that's what my EP said to me) - it is to reduce the intensity and frequency of episodes and not nessecarily to remove the episodes completely - though some are lucky and never have an AF bout again.

Certainly my last episode was different, 8 weeks post ablation, Hr was 110-115 but didn't really rise beyond 130 on activity (only stairs/getting dressed/nappy changing) and I was tolerating it and able to function fine. I actually felt better standing than sitting/lying down. It lasted 32 hours before going back to normal. And I could live with that if it happened again - primarily because I have been so debilitated by it in the past.

You have had a lot of intervention - bad luck. It must have worn you out at times.

I don’t know how people know when NSR resumes as all I seem to be getting is the step-wise rates that the specialist said was evidence of persistent flutter (starting at 1:2 = ~150bpm, etc). I’d love mine to feel normal - which I guess would be 72ish with a nice natural climb or fall as I exercised or relaxed. Even breathing deeply, which used to slow my heart nicely down to about 60, does very little if nothing since the flutter.

One thing if you can help - the chest discomfort I feel was dismissed as nothing to worry about by the doctors - yet when I look online it isn’t mentioned as a normal symptom (indeed some websites say it’s a reason to seek medical help). It seems odd to me that the internet offers such poor information.

Suggest you try and find a flat path about a mile long, Walk gently along it, turn round and come back. Do it every day without exception if you can and get some wet weather gear. A fit bit or similar might help you to motivate yourself and monitor your times closely. Your heart is a muscle - give it some gentle steady work to do?

Ppiman
Ppiman in reply to Ianc2

Thanks for the tips. I see the specialist next week to discuss the echo cardiogram and ablation. After that I’ll feel a bit wiser and more settled I think.

I have had an ablation for flutter. I understand that it is uncomplicated and straightforward to carry out and I had no problems with it. Take someone with you and make notes so you can discuss it later.

Ppiman
Ppiman in reply to Ianc2

Thank Ian. My wife will be holding my hand! 😉 Can I ask - was yours persistent flutter? I’m really struggling with mine - it’s if I try to do much that I feel it worsening rapidly.

Yes. It occurred after I had open heart surgery to fix valves in 2014. The ablation took place a year later and was straight forward and successful. I later went on a 'bargain' cruise to new Zealand and came back with a very sore throat . I was diagnosed as having an allergic reaction and prescribed some anti histamines which had the unfortunate effect of kicking off afib. Such is life.

However the afib is mild. It is permanent. I have been offered another ablation but it is an area of the heart that is difficult to get to and carries a much higher risk. I am 75 and can honestly say it doesn't affect me too much. I carry out regular gentle exercise - mainly walking and enjoy gardening, but it has taken a while to build up to my present levels of activity. Hope this helps.

Ppiman
Ppiman in reply to Ianc2

Yes it does. Thank you. As you say - such is life, eh? We plod on.

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