What would you say is the worst part of AF ... - AF Association

AF Association

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What would you say is the worst part of AF for you?

jedimasterlincoln
jedimasterlincoln

I know it'll be obvious things like rapid heart rate or lifestyle restrictions.... but for me, at the moment at least, it's excessive sweating?

Being back at work, it's a half mile walk on the flat.... and even if I walk slowly and am not wrapped up in a fleece plus workwear I'm drenched when I get there. Hospitals are a warm place anyway but some days even sitting still I'm clammy.

Walking to school (half a mile there half a mile back), even when there's dew on the cars and a breeze in the air, I get back with my clothes sticking to me no matter what I wear!

It's starting to get annoying.

49 Replies

Know what you mean The care home I work in had just highered the heating and I'm roasting even if my hands feel cold

For me the worst thing is psychological - the uncertainty about the future. Am I going to be able to keep working full time in a senior role? Or will the stress and pressure be too much? (I’ve been off work since mid June). Will we have the financial freedom in retirement we’ve talked about and worked towards for years? Are we going to go on all the travel adventures we have planned? I’m already rethinking our planned trip to Machu Picchu. I hear the altitude can play havoc with young, fit people and isn’t recommended for people with AF. I can put up with the physical stuff - pain, breathlessness and the hospital stays but for someone who has always been in control, not knowing if or when things will get (and stay) under control is doing my head in.

And if anyone has been to Machu Picchu with AF please let me know 😃✈️

I'm willing to go on ahead (expenses paid) to find out for you

😂😂😂 If I don’t get back to work I won’t be able to afford to go anyway

SpritzerAce
SpritzerAce in reply to Kaz747

Totally agree with you. Plus the anxiety of not knowing when the next episode will be.

Kaz747
Kaz747 in reply to SpritzerAce

Exactly

Nothing worse than than AF's best friend anxiety for me 😭

I also get the sweats. It's all 💩

Not sure if it is the AF itself or the medication I take but I find needing to pee frequently is very restrictive.

When in AF I need to pee a lot, when I'm not it's about normal for me once every 8 or 9 hours.

Morzine
Morzine in reply to Mrspat

Me to I wee so often I’m worrying about being in hospital for ablation......cos when I was rushed to hospital in Spain with this I felt so embaressed keep asking for the bedpan.....

Indigo42916
Indigo42916 in reply to Mrspat

The peeing is apparently a common AFib thing.

Waking up in the morning and feeling my heart still doing a cha cha!

For me, probably being told there’s no cure. I can’t have an ablation. Have to live with it and worry I might get worse.

But people live with worse problems.

I’ve had no AF in over four years - thanks to Flecainide - but I have to try to avoid overheated shops and offices too.

When I had episodes of AF, the thing I feared most was an attack in a public place with no fast, really fast, access to a toilet. I always had dreadful diarrhea as well as the constant weeing. ☹️

Jill13
Jill13 in reply to Finvola

Hi I was interested to hear you had diarrhoea when in AF. I am in permanent AF and have about four loose movements a day Annyone else notice this symptom too?

Hidden
Hidden in reply to Jill13

Yes I always had diarrhoea with the AF and a lot of times in between but I stopped taking lansporozole for the reflux and changed my BP drug and the diarrhoea And the AF have both stopped!!

momo24
momo24 in reply to Finvola

Hi Finvola, I too get terrible diarrhoea when in AF. It’s very embarrassing!

I feel for you.

Finvola
Finvola in reply to momo24

Thank you momo. Flecainide has done much more for my quality of life than just controlling the AF. I have noticed a very strong relationship between a healthy gut and a wobbly heart so it makes sense that the opposite is true too.

Hidden
Hidden in reply to Finvola

Wow no AF in 4 years is very impressive. I went from PIP with flec to daily flec last spring. So far no trouble in 7 mo and I’ve really not had side effects. Do you have any tips for us hoping to make 4 yr with no AF?

Finvola
Finvola in reply to Hidden

I honestly feel so lucky, Hoski to have had so long without the dreaded episodes. My cardiologist says my ECG hasn’t changed in those four years - presumably the drug isn’t doing anything it shouldn’t.

Like most of us, I’ve made very aggressive lifestyle changes where they were needed - mainly with diet and stress. No alcohol, artificial stuff, processed stuff, sugar, meat and caffeine in small amounts, the odd treat!! and loads of fruit and vegs. Anything which may stress me, I avoid, duck or stonewall.

One thing I have found helpful for stopping my tendency to worry about the future at 4 am, was to decide that my AF would return and when it does, I’ll cope with it but till then I’m going to live my life!! The example of others on this forum who cope with much worse than I have is an inspiration and reassurance.

Long may Flecainide work for you - enjoy your AF-free years.

Hidden
Hidden in reply to Finvola

Thankyou! It has taken me almost 3 yr to drop 40 lb, I have 40 more to reach bmi of less than 25. Im pushing harder, exercising and eating healthy more consistently. Hearing your story is inspirational, just knowing it’s possible is cool. Thanks💜

Finvola
Finvola in reply to Hidden

That’s an impressive weight loss! Well done indeed.

Since having AF nearly 5 years now I have not had a good nights sleep - by that I mean 5 or 6 hours solid sleep. I nearly always get up 3 times during the night to go to the loo. It is fine during the day can go for ages (unless I am in very fast AF then it's nearly every 20 mins). I wish I knew why it happens at night.

Cassie

Mrsvemb
Mrsvemb in reply to cassie46

I have the same problem and hadn’t connected it to the AF. I hardly go to the loo all day, but as soon as I lay down at night I start to go. Sometimes it can be five or six times before even getting off to sleep then up every couple of hours, and others like you will wake up three or four times during the night. It’s so annoying. I am not in permanent AF, I get PAF and will be non stop in the loo during an attack.

I haven't been in AF for 8yrs as flecainide keeps me in check but also haven't had a decent night's sleep in all that time as I wake up every 2hrs either to go to the loo or having a hot flush with ectopics, and like you Cassie I can go for hours during the day without either. I'm not sure if it's the AF or side effect of flecainide but the only one night I slept for more than 4hrs was after a GA for a heart procedure.

Hidden
Hidden in reply to Angie06

Wow 8 yr is amazing!

For me it is the anxiety that accompanies this condition. The restrictions that my anxiety and this condition has placed on me. The TERRIBLE dizzy spells that i get quite often - could be a combination of anxiety and the Flecainide and Verapamil that i am taking. I miss my old pre-afib life terribly.

My husband not understanding and having constant disagreements about what I can and can't do.

Change the husband keep the condition, I think one is worse than the other !

I have thought of that more than once!

Hidden
Hidden

I've not found anything to say here. I used to feel very annoyed with my heart for letting me down and there's the constant uncertainty. But nobody can wake up and say 'I'll be fine all day today and nothing will go wrong.'

There are surely many positives in that we tend to pay attention to our wellbeing just a little bit more than most.

Mine is not being able to jog anymore for fear of an episode happening. Can't exercise the way I used to because of the anxiety. Never had anxiety until diagnosed with AFib a year and a half ago. At least I can still bike ride and power walk for exercise without the anxiety.

For me it's knowing that I have to manage it but not being able to because I Have to carry on looking after my mother who lives with me. I am hoping that I can outlive her so that I maybe have a few years of living life with AF but enjoying it!!!

Losing normality......life changes after diagnosis.......I feel uneasy making plans......currently in Lyon after a night in motel I’m off to see the cardio who does the ablation for an assessment ......last night in the motel restaurant as per usual since I got afib, I get an initial panic in there , I just don’t feel at ease going out to eat.....I came over clammy ha,f way thru....but it all went fine, I tell myself all will be fine but I seem to have this worry always in my brain.....oh yes and what else do I miss...wine! I do have the odd glass and I’m fine but nit often.

Anxiety and jaw ache, along with all the rest!

Hello everyone, I have constant AF and I miss terribly not being able to exercise due to being breathless and I know it is the pills that do this I am on Verapamil and digoxin are there any pills that don't make you breathless. I miss being able to go for a walk and planning to go on holiday. I ring for an ambulance if the AF gets really bad, I can't always do that so anxiety is high. Sorry not to be as positive as I should be anyone have any advice here? We all seem to be in a similar boat.

As with others replies, it was not being able to plan in the future as AF always interfered, now AF free after ablation but unfortunately suffering from anxiety at every eptopic and missed beat but I am getting there!

Hidden
Hidden

Excluding all the physical issues when AF hits, the worse after almost 3 yr of PAF is the not knowing if or when it will strike. It has been 7 mo since last one. I know longer am obcessed with AF but I do thank my heart for behaving, before going to sleep every night.

Hidden
Hidden

The anxiety and depression it brought, still does bring, it's a damn nuisance, feel like I'm a constant pain on my family with my worrying😩😩

I have lost all faith with the medical profession. I'm just a money making machine for them. For me the worst thing is losing hope. I am not one who can endure uncomfortable conversations, so how do I tell my cardiologist of 6 years I no longer trust her? I'm lost right now, not knowing what to do. After the first Afib ablation, I thought ok that was'nt so bad, but it only lasted 6 months before the PVCs changed my life again. So I have the second ablation. That one almost killed me. I thought I knew what pain was until I had a pseudo aneurysm in my groin. That lasted 8 weeks and it still bothers me. So I get through that and now Afib is back. Any exertion has me breathing heavy. Before the first ablation I had lost 30 pounds now it's all back. I have an appt with ablation dr in 12 days and then I will have to decide if ablation #3 is a chance worth taking. I am reminded of the old fable of the Dutch boy plugging one leak in the damn only to find another. What's the point? To hope for some kind of miracle that's never coming? I admire all of the people I see posting positive things and I so wish I could be like that, but I got nothing left in me. The will to fight keeps on ebbing away.....

The meds side effects,

Having to go for a pee which seems like every few minutes apparently AF is a diuretic. Do you get sweats even when you are not in AF?

Hidden
Hidden

Im ok apart from lack of sleep ive been ok since ive been on 3.8 bisoprolol but i dread going to bed i just cant get a decent nights sleep

For me it is regular episodes of uncomfortable coupled atrial ectopics on and off over many hours, instead of my usual persistent AF.

For me it is when my heart beats very slowly and weakly and then I feel as though I am ‘fading away’. I have to start slow rhythmic breathing to get it going again. I am nervous of going out when I am like that. I do admire the people on here who have far worse problems and ‘soldier on’.

Badger2021
Badger2021 in reply to Fruitbat2

Hello Fruitbat2

That sounds like something to talk to your doctor about, if you haven’t already. Perhaps it is due to your medication. Or maybe something else can be done to stop your heart beating so slowly.

Have you ever fallen unexpectedly or fainted?

Fruitbat2
Fruitbat2 in reply to Badger2021

Some days I am fine, no problems. This seems to happen when I am overtired or under a lot of stress (a lot of family problems lately). If this continues I will go to see my go. Thank you for your concern.

Fruitbat2
Fruitbat2 in reply to Fruitbat2

No I have never fallen or fainted.

Feeling weak, like I will collapse, scary.

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