Breathlessness/fatigue

[Polly159]

Breathlessness and tiredness seem myself companions. Have 2-3 80 60-90 minute afib episodes a week. Docs are pursuing amiodarone as new drug and possible ablation. In the meantime they don't seem bothered about breathlessness etc. Should I pursue this with them?

[CDreamer]

Breathlessness and fatigue are symptoms of the AF. What is it that concerns you?

[Polly159 in reply to CDreamer]

Thanks, CD dreamer. I think my concerns stem from the fact that the docs didn't properly explain that breathlessness and general fatigue were symptoms. Any time I mentioned them they either blanked me or talked about 'running marathons. Also, these particular symptoms are increasing (because, no doubt, my afib episodes have gone from monthly to twice or more weekly and I'm struggling work-wise. Now that I know these are symptoms, (and not me being lazy!) I can try to take measures to do some energy conservation! Thanks again

[Hidden in reply to Polly159]

I don't get the breathlessness but do get the tiredness following anything resembling what used to be normal activities, like yesterday going to a local village fete! I only have occasional episodes of AF that rarely last more than 2 hours at most with PIP but I thought it was the after effects of the drugs! Must admit the episodes are occurring more frequently now too- like around every four days, so there is the background concern as to when the next one is coming! I wish I could work out possible triggers but it's always different and I don't drink or have coffee or proper tea etc am not overweight etc and my heart was fine when I had an echocardiogram. We are all different!

[Polly159 in reply to Hidden]

Thanks Sandi - Afib is certainly a steep learning curve but much helped, I have to say, by this forum including your reply. From what the doc and folk on here are saying, I've now come to the conclusion (maybe a bit belatedly) that, as someone neatly put it 'Afib begets afib' or as one cardiologist said way back at the beginning (last May) - 'your heart likes being in Afib'(!) Didn't believe him at the time, but I do now. It is, it seems a 'progressive' disease. Muddying the waters, of course are all the various medicines we each have. (I think, as someone here advised, the sotalol I'm taking is causing the breathlessness.)

Yes, we are all different, but it's good to know what others are experiencing. The thing that has been most reassuring recently is that tiredness is indeed a common part of life with Afib and, like you, I struggle at times with the 'normal' - like village fetes - become an uphill battle. As someone else said - easy does it.....Thanks again.

[Polly159 in reply to Hidden]

Meant to say, too - until recently I was very vigilant about any triggers. Now, my Afib doesn't seem to need triggers - it has become the archetypal uninvited guest! Especially since now anyway all the triggers (food, drinks, burning the midnight oil etc) are long gone - no appetite for them any more!

[Hidden in reply to Polly159]

I love that "archetypal uninvited guest" but will not accept that this paroxysmal atrial fibrillation is bound to progress to permanent through persistent. After all that is not the policy with most diseases. They do try to stop cancer (and other problems) getting worse if caught in the early stages so why not with AF which seems to be very common.

[Polly159 in reply to Hidden]

Ah, why not afib indeed. I'm coming more and more to the conclusion that some diseases for whatever reason (sometimes good reasons as with cancer) receive a lot more attention than others. (In some ways it's understandable as we're all human including those who work in the health service.)

AFIB, given its prevalence/stroke risk/effects on quality of life etc, is not, I believe, nearly as high profile as it should be. I sometimes feel if illnesses are not 'dramatic'/'life-threatening' less attention is given. Perhaps AFA needs to be more high profile. Interesting to now see ads ' for arthritis which perhaps also came into the 'less high profile' category.

[Gillybean123]

Hi, funny you should say that about breathlessness, I have been terrible this week. Lot better today. Think it may have been the weather. Just to let you know there is a lot of talk about amiodarone. But it was one of the best medications I ever took. No side effects worked brilliant but because of my age they wouldn't let me stay on it. Take care.

[Polly159 in reply to Gillybean123]

Many thanks, Gillybean, reassuring to have your experience 're breathlessness and amiodarone. It's taking me a while to come round to the conclusion (based on others' experiences like yourself) that when I am breathless/sluggish/fatigued I am not just bring a) lazy or b) delusional. Thanks again for your help.

[Polly159 in reply to Polly159]

Bring = being

[Gillybean123 in reply to Polly159]

Also, one of my doctors said, your tablets are slowing your heart rate down, your mind wants to go faster, (I walk very fast everywhere, don't drive So!) so I need to take a chill pill and slow down. The other day I had to go and get my prescription, it was raining and really warm, I couldn't breath. Then I thought slow down and I was fine. Bit of anxiety as well. I am always on the go. Have to make myself stop and have a break. Then I nod off. Tablets again. Hey Ho. X

[Polly159 in reply to Gillybean123]

Thanks again - it is, I feel, as you say, a constant 'management' issue and knowing the vagaries of afib and your own responses to it. Today I felt sluggish, was doing some hoovering so thought I would 'buzz' myself out of my sluggishness with some 'energetic' hoovering! Brought on an AFIB episode which only lasted 5 minutes but was very unpleasant - easy does it, I suppose.

[Barb1]

Have you been tested for sleep apnoae?

[Polly159 in reply to Barb1]

No, I haven't, Barb, maybe mention it to doc next time (if I ever see a doc as I seem to be in touch most with the secretary and the pharmacist!) Sleep doesn't seem to be a problem for me except when an AFIB episode happens at night. Thanks for your suggestion.

[Gillybean123]

We have to be so very careful. I had nothing for 10 months then two in a week. That was three weeks ago. Still getting my head sorted out. You have watch what you do watch what you lift. Then something stupid brings it on. Anyway have a good day. X

[JaneFinn]

Hi Polly, it’s horrible feeling like this and not really knowing why, isn’t it?

I personally have questions around why I feel so breathless and fatigued when i’m not actually in AF (or directly afterwards) because I feel I should be feeling ‘normal’ once I’ve got over the effects!

Is that what you’re experiencing? If so, it could well be a combination of factors - it sounds like you are probably suffering the after effects of the AF events, and also your meds may be causing it. Like others have said, the betablockers are a likely culprit because of slowing your heart down. Some people do find that a tweak of their meds can help the symptoms, but in my experience, doctors & cardiologists are usually focussed on trying to find the medication that best controls the AF, and they’re not at all focussed on the impact of any side effects! Sometimes we have to be quite direct (even pushy) to get them to understand how we are feeling and the impact the symptoms are having on our lives.

If I were you, next time you see your doctor, I’d push a bit on the issue of breathlessness & fatigue in case there’s anything they can suggest or explore. For instance, have you had blood tests recently to check there’s no underlying deficiency or imbalance that might be pulling you down? (Often the routine blood tests they do will check on kidneys and liver, but not things like vitamin D, B12, magnesium etc etc)

But whatever the cause, you’re definitely not being delusional or lazy!! So you can get that idea out of your head 😁

And do be kind to yourself and take it easy when you need to

Really hope you get the help you need to feel better xx

[Polly159]

Thanks, Jane! Agree with everything you've said. Yep, the docs, (I suppose it's an occupational hazard!) focus on fixing the medical problem and remain stonily silent 're how you're actually feeling. In fact it's really only now, reading these posts, that I do realise AF has after effects. Previously I thought the episodes were the only problem. I will definitely pursue breathlessness etc with doc next time especially since the post-episode effects (AF twice weekly) are really beginning to affect work as well as life. Just at the early stages of know how best to manage things for optimum work time.

As you say too, med sideffects are a factor. I'm on sotalol at the moment and try as I might- diet and some increased movement/exercise, the weight just ain't shifting. Thanks again for your help.

[JaneFinn in reply to Polly159]

I sympathise with trying to shift weight on betablockers too!

Do let us know how you get on with the dr etc xx

[Polly159]

Many thanks! The way our GP is organised at the moment, I have to see a pharmacist on Tuesday and there are emails toing and froing between GP and cardiologist. However, if I still feel under par I'll make a doctor's appointment......

[djmnet]

The beta blockers (sotalol in your case) make you breathless and low energy. They slow the heart rate and thus also your metabolism, which in turn causes weight gain and/or inability to lose weight.

[Mamamarilyn]

Hi Polly, I’m just going to tell you my experience on Amiodarone...it might not be other people’s, indeed I rather hope not.

I was admitted to my local hospital as an episode of AF was not settling and was put on an Amiodarone drip. In a few hours I was feeling generally unwell, my heart was still doing its tricks and worst of all the arm with the drip was inflamed and swollen. So the decision was that I was obviously allergic to the drug and they disconnected the drip.

The husband of a friend of mine who had been on Am. without symptoms developed lung problems which were found to be associated with the drug. This was irreversible.

[Polly159 in reply to Mamamarilyn]

Thank you, Marilyn, it's goid to know what people have experienced and I have reservations about amiodarone. Haven't started it yet, but see the pharmacist at our GP practice next week - with a list of questions and comments from people here. Obviously irreversible side effects are the most worrying.

If I do go ahead with it, I will be self-monitoring like a hawk! Thanks again.