Fed Up Feeling Unwell: Having an Afib... - Atrial Fibrillati...

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Fed Up Feeling Unwell

Ochg profile image
Ochg
45 Replies

Having an Afib episode as I write this post- have taken my Flecainide as a PIP. Really wanted to go out for a little walk this morning but episode came on while washing my hair- feeling a bit rough. Had enough of feeling rotten, just when you think it's safe to go out these darn episodes come on again. I know it will pass eventually but they are really getting me down. Sorry to sound so negative this morning, I live alone so have no one to chat too, would really like a bit of a lift.

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Ochg
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45 Replies
BobD profile image
BobDVolunteer

Yes these things do try us but the alternative is not too good either. The sun is shining. the air is clear (apart from all the pollen) the birds are singing (too loudly at 4 30 this morning) and we are alive. Rejoice.

Ochg profile image
Ochg in reply toBobD

Hi BobD, thank you for your reply, it has cheered me up.

sotolol profile image
sotolol in reply toBobD

Yes we are alive. We should be thankful for just that. 👍🏻

meadfoot profile image
meadfoot

Sorry you are feeling poorly and low. This is a horrid condition we battle with and many people who don’t suffer from it don’t truly understand, however all of us here do so you are very much supported by everyone.

I hope your PIP kicks in quickly and if you feel up to it can get out in the fresh air for a while. Sending a big virtual hug along with my empathy. Stay safe and hope the day goes better than it has started. Rooting for you. X

Ochg profile image
Ochg in reply tomeadfoot

Hello meadfoot, thank you so much for your kind words, I really do appreciate it.

PIP has worked its magic, feeling better but still feeling rather lightheaded so will wait a while before venturing out for a walk. I hate how this condition can make me feel fearful, have had two episodes of total collapse while out shopping ( before covid struck). When I saw the Cardiologist last week was advised ablation my best option, but due to current situation waiting list could be six months, in the meantime has commenced me on Flecainide ( initially as a PIP then he decided twice daily dose), Edoxaban and a statin. All this has been a bit of a shock, took early retirement little over 12 months ago, had loads of plans but then four months ago Afib arrived, and my whole life has been turned upside down ( had to give up my dear puppy for rehoming not able to give her all she needed- border collie) that really broke my heart. But thankfully found this wonderful site, full of information and most of all lovely people like your good self.

Thank you again for your support, and wonderful virtual hug I'm crying a bit ( daft old thing).

Take care and keep safe, bye bye for now, and thank you XXX

meadfoot profile image
meadfoot in reply toOchg

I feel your sadness and having to give up your little dog made my eyes fill with tears. I identify with everything you have said and it seems that the journey we with af have to go on is a harsh one. Non of us deserve it but we are on it together and it helps, believe me, especially when this rogue condition bites us the hardest.

It’s early days and I am pleased you have a plan with your consultant even if it is one which is held up currently. In the meantime your meds are your friend along with us all here on the forum, when you feel especially low there is always someone around to support. Stay safe. X

Ochg profile image
Ochg in reply tomeadfoot

Oh thank you so much meadfoot- can I keep in touch as you have helped me so much today X

meadfoot profile image
meadfoot in reply toOchg

Of course you can. You can contact me on this forum via a personal message. X

Ochg profile image
Ochg in reply tomeadfoot

thank you X

Lucymoo profile image
Lucymoo in reply toOchg

Hi just trying to be positive for you, I’ve been retired a couple of years and recently diagnosed with AF. My last ecg over 48 hrs showed my longest period in AF was 13 hrs and I get daily events whilst awaiting an ablation sometime next year.

I’ve decided life continues and to do what I enjoy regardless. The experts say AF is not life threatening so I walk every day with my dog average around 18000 steps daily and keep going. I might feel off it some days but slow down or have a sit til I feel able to go on.

It’s sad you had to Re home your dog but you could try going out each day and stretching yourself a little each day. Yesterday whilst walking my pulse was 170 which made me breathless and slower but I felt better for being out and about.

I take my medications and manage life I know it’s a bit scary at times but do what feels good for you. Stay safe and stay positive

Ochg profile image
Ochg in reply toLucymoo

Good morning Lucymoo, thank you for your kind words and advice.

You are right I need to live my life not allow the AF to dictate stuff, if I can. Feeling much better this morning, so will be going for short walk soon- cardiologist has told me not drive until I have had ablation ( due to episodes of collapse), so only able to walk round small local nature reserve, but at least I am out and getting some exercise and fresh air.

Thank you again for your support- hopefully when ablation has been done and I have recovered I will be able to get another four legged companion.

Keep cool, and stay safe, bye bye for now.

Alessa69 profile image
Alessa69 in reply toOchg

I am so sorry that you are struggling alone . You will find lots of support here though . I was diagnosed 22 months ago& this site has been a HUGE help and mine of information to me . Take care during the heat, from personal experience , it can be a trigger for me . You hopefully will find that things will settle with Flecaineide..... I was recently switched from using it as a PIP to now a daily dose after 2 lengthy AFib episodes over the last 5 weeks. It has certainly helped me a lot ! Hope that you will get good results too. The main thing is , that you are diagnosed & on the best treatment , so that’s a huge relief !

I find these days I just have to pace life a more carefully& allow more rest , but I’m lucky , I have an 84 yr old beloved and 2 labradors, one who is nearly 84 in Human years, and a mad young rescue one to look after . It’s sad that you had to re- home your puppy, but maybe when things stabilise , you might consider an adult rescue dog ? They do get us out and keep us walking . Being out in nature is bliss!

61, I know it’s a shock taking early retirement, but once you get your head around it , there are just SO many new things to do! Please do message me if you would like to chat re worries ? I’m a few years on , having taking early retirement from flying a few years ago . You will be OK, but I know it must be scary going through all this alone .

Remember to keep hydrated in the heat , so important !

Sending a virtual hug

🥰

Ochg profile image
Ochg in reply toAlessa69

Thank you Alessa69 for you kind words here. Your doggies sound smashing, they are such a huge part of family life. Oh and not forgetting your dear beloved of course!!!

Would love to keep in touch thank you , I have sent you a PM I think I have done it right. bye bye for now, regards, Shirley

Alessa69 profile image
Alessa69 in reply toOchg

I’ve got & replied ! Stay safe in the shade ..... I speak as one who used to be able to run in hot countries... it’s like a different lifetime now though ! 🥰

Paulbounce profile image
Paulbounce

Ochg wrote

"PIP has worked its magic, feeling better but still feeling rather lightheaded so will wait a while before venturing out for a walk. I hate how this condition can make me feel fearful"

You are not alone. Flec can (and does) work it's magic. It sounds like it has for you ;-)

What great news.

After an afib episode it's takes me about a week to stop panicking about it. You now know using it as PIP works. Carry one with you at all times and if afib kicks in again you know you are likely to nail it. The fear factor is worse than the afib for me - I really understand where you are coming from. Sometimes just the thought of having a PIP with you is enough to help you relax - which in turn helps with the 'fear factor'.

Trust me on this one - I'm the biggest wuss out when it comes down to afib. Instantly though I'll relax just knowing I've got my flec PIP just in case. The thing is it works too - at least for me - and many others I think. Sounds like it does for you also.

May I suggest you go for your walk - just half of what you might normally do. Increase it the next day a little until you feel 100% ok about it.

To me it sounds like the flec has worked (from your last post) and things are getting back on track.

Well done you.

Stay safe and stay well.

Virtual hug sent.

Paul

PS - can we send vitual hugs. I better check with Boris. I don't want to be fined heheh

Ochg profile image
Ochg in reply toPaulbounce

Hello Paulbounce - thank you so very much for your kindness and virtual hug. It has made me feel so much better knowing I am not alone with all this.

I have lived on my own for many years ( albeit always with a four legged companion), and have managed, and enjoyed all that life has given me- but this Afib ( and not having my little puppy with me anymore), has certainly given my confidence a battering. But having such wonderful support from people like you on this community website has really helped me 'get my head sorted' .

Today has been scary but I now realise the Flec medication 'dose exactly what is says on the label' !! Hopefully any side effects will be manageable- and more bearable than the Afib!!

Didn't get to go for my walk today , but will try to go a short distance, as you advise, in the morning before it gets too hot. If not then it will be a 'up and down stairs walking , with some on the spot muscle stretches ' kind of a day as a per Mr Motivator !!

Thank you again Paul, virtual hug really appreciated, I am sure Boris would approve.

Keep safe, and best wishes,

Shirley or Ochg ( don't know why I put those letters forward as a name!!)

Paulbounce profile image
Paulbounce in reply toOchg

Shirley - I checked with Boris and he said it's fine to send a virtual hug and within government guidelines. And get THIS - he sent you one too ;-)

How good is that ! A virtual hug from number 10 heheh

Enjoy your day sweetheart and take care.

Paul

Finvola profile image
Finvola

Glad you are feeling a bit better now. This condition really does knock us for six and even more so with restrictions on our movements and meeting up with friends. But, the sun always seems to come out again in life, the episode passes and we get on with life.

Your ablation is something to aim for and focus on. I was interested that you were washing your hair when the episode started. Before I took Flecainide daily I had an episode each time I took a shower. Getting a shower seat installed stopped them and I’ve used it ever since.

Best wishes.

Ochg profile image
Ochg in reply toFinvola

Hi Finvola- thank you for your support I do appreciate it. Feeling much better now, hopefully tomorrow will be a better day, take care xxx

Buffafly profile image
Buffafly

Hi, having fun trying to say your ‘name’ in my head and not succeeding so can’t think how to greet you ☺️

I’m sorry about how you are feeling and particularly about the puppy. Clearly you did the right thing at the moment but I do hope you consider getting another more suitable dog when you get sorted. My father was a farmer and used to get quite vocal about people keeping dogs simply as pets as he said dogs are ‘working animals’ and shouldn’t be kept unless they are given a task, which is why of course they are so good as companions for people with health problems if they are well trained. We have been watching a programme on TV about dogs ‘working’ in amazing jobs.

Did you have a stressful job? Years of stress even if in a job you enjoy take their toll and I sometimes wonder if suddenly relaxing is a shock to the system in the same way people tend to get headaches at the weekends.

I hope you get a good treatment plan soon and don’t have to wait too long 💜

Ochg profile image
Ochg in reply toBuffafly

Hello Buffafly, my 'name' is a bit strange I know, not sure why I didn't think a bit more before I registered with it!! Real name is Shirley.

I have always had border collies- love there intelligence, and as your dad rightly says, they need to be worked or they will go mad. That was the reason why I had to let my little girl go, it was in her best interest. Still breaks your heart though, slowly getting used to being totally alone.

My job had been very stressful over the years (42 yrs registered nurse- trauma , A&E, then last 20yrs in occupational health)- so little wonder I suppose my little ticker has had a bit of a blip!

Hopefully once I have the ablation and have recovered will be in a better position to be able to care for another dog- not a collie though.

Thank you for your kind words, feeling much better now heart rate back to normal.

Take care and keep safe, would love to keep in touch if thats ok with you. x

Buffafly profile image
Buffafly in reply toOchg

Hello Shirley, I have ‘followed’ you so I’ll see when you post anything. I didn’t think hard enough before I chose my username either, not planning to post anything then, but now it’s slightly embarrassing! You can PM me if you want to cry on my shoulder or ask anything, even though I’m a cat person 😺

Ochg profile image
Ochg in reply toBuffafly

Morning Buffafly, how do I do a personal message ? bit of a dinosaur when it comes to tecky stuff

Alessa69 profile image
Alessa69 in reply toOchg

I have just clicked on your page , & clicked on message... a written a note . So think it will send you a flag ? So to do a private message, just click on persons page/ them click on message

Hope that works ?!

katiefforde profile image
katiefforde

I'm so sorry, it's really rotten. I have things recorded on tv that I only allow myself to watch if I'm having an episode. Strangely this convinces me that it's a little bit of a treat, getting up at 10 pm (failed to get to sleep) or staying up late to watch tv. I can never do more than get to the loo however many times. I'm not offering anything useful, only empathy! Very glad you found this site. It is so supportive. Katie

Ochg profile image
Ochg in reply tokatiefforde

Good morning Katie, thank you for your support I really do appreciate it. The folk on this site are so kind and supportive.

I am feeling much better this morning, the day looks lovely, bright and sunny, getting very warm as well now, looks like it will be hot, hot, hot!! Hope you are also feeling well today, keep safe, keep cool!!!!. Shirleyx

katiefforde profile image
katiefforde in reply toOchg

So glad you're feeling better. Those dark, lonely hours are horrid, but thank goodness, they do pass. And you're not alone! I'm well as I had an attack a couple of days ago and I'm always better when I've got over it. Not sure if it's psychological! Katie x

Ecki profile image
Ecki

So glad you're feeling better today. It's so scary when you're in AF, in the depths of the night, feeling alone. When I was a new member of this group, I read some words of wisdom, sorry, can't remember who posted them, saying don't let AF be your only hobby. I have learned that it is vital to have things to take your mind away from AF. I've recently started making models with air dry clay, only because the previous owner of our house (moved in last year) left 25kg of it in the shed. Never done any clay work/pottery of any kind before but Google and YouTube are good teachers. What I'm making isn't great but I'm enjoying it and it is immensely absorbing. Would you consider getting a rescuer greyhound, I believe the they don't need a lot of exercise and are happy to spend hours lying on the sofa. Hope you continue to approve, all the best.

Ochg profile image
Ochg in reply toEcki

Morning Ecki,

Thank you for your support - you are right in what you say about not letting AF rule the roost!!. Your new hobby sounds great, what a smashing surprise to find such a treat just waiting for you in your new home. I should imagine it can be really relaxing.

Once the ablation is out of the way I do intend to get another doggy friend, have thought that a rescue like a greyhound might be for me now, have always had border collies in the past but they need loads of mental as well as physical exercise so perhaps the time has come for me to change breed type- to go with my mature years!!

Getting hot now so plenty of hydration needed today- enjoy your day and keep cool, safe and well. Bye bye for now, and again thank you for being there.x

purpleswimmer profile image
purpleswimmer

Hello, I get exactly how your feeling as I retired at 63yrs and was healthy and fit. I swam every weekday 60 lengths, pilates x 2 a week and occasional Aquafit. I enjoyed walks around the 6k a couple times a week. I was lucky in that other than a blood clot in my shoulder of all places, an operation to straighten out my pinkie finger and being diagnosed with lymphadema in my left leg....have always suffered swollen ankles in the heat and when walking a lot, I still felt healthy and lucky to be like that at my age. However this all changed in January this year when I had heart failure and resulting afib or as cardio said the other way round. I have been and still can be very scared of the whole thing. I have been extremely weepy and depressed at times and feel I just get out walking again 1k if I am lucky when back it comes. However after playing about with my meds which were making me very sicky and being adamant I wanted to see consultant again I had that appointment yesterday and MRI scan last week. Diagnoses is enlarged heart and permanent afib no furred arteries and as cardio said it is not awful.....well that is his opinion! I have been feeling a lot better this week and have managed over 6000 steps some days so have decided I will try hard to put a positive slant on it. Acceptance is not my strong point! I re homed a cockapoo the week before my heart failure as my previous dog left us at 16yrs last September but have a great partner who has been working from home and able to help with dog but to be honest the dog because we have a big garden had some days only had 10-15 mins walk but so glad we got her. I am accepting my house is not always as clean as I like and my garden is not getting the attention it deserves, but is actually looking not bad. My partner has different ideas of housework and gardening so I am coming to terms with that. I am just glad to be alive. Try and enjoy the good days and you will get through this. Xx

Ochg profile image
Ochg in reply topurpleswimmer

Good morning purpleswimmer, it is lovely to hear from you.

You certainly are a fit person, it makes no sense dose it when you have a healthy life style and then out of the blue, bang your ticker decides to do some tricks. As you say when the medics give you the diagnosis it can be hard initially to see the positives.

Glad to hear that you are feeling better this week and are able to do some more walking, I really enjoyed walking with my dogs over the years. They certainly become part of you - I lost my faithful friend the week before I retired two years ago, she was 11yrs fit as a flea or so I thought, bladder cancer said otherwise. So after a while of searching found a new puppy, only to have this AF to hit me . Life can be challenging at times to say the least !!

Like you though, I am determined not to let this 'get in the way' too much. Just need to get my head around the fact that as the medics say, it is not life threatening , and the condition is manageable. Your partner sounds 'like a good un', even though you might not quite see eye to eye about a couple of things.

Like you I too am glad to be alive and still kicking - onwards and upwards, keep safe, stay well and keep cool. Bye bye for now and again thank you for being there. xx

Flyer2820 profile image
Flyer2820

Hi Ochg,

I know exactly how you feel. It does get you down. I have had several visits to the hospital with my afib. I see you are down for an ablation though. I had almost 3 years of af that often made me very ill. I had an ablation last year in November and have now been af free for 6 months. I cannot describe the feeling of being free of af, the only word near is ecstatic. There is light at the end of the tunnel so hang on in there and think of the good times.

Hope all goes well for you and may the ablation be with you.

Regards Flyer.

Ochg profile image
Ochg

Morning Flyer,

Thank you for your kind words, they have really help me feel much more positive. Have just viewed the ablation procedure on the BHF website - ouch ! But all worth it to be able to 'get back to normal'. Just wondered how long did it take you to recover from the procedure?

I am feeling much better today I am glad to say the Flecainide medication is certainly working, thank goodness.

Thank you again for your support and guidance, keep cool stay safe and well.

Bye bye for now, x

lindat15 profile image
lindat15

Hi Shirley great that the flec has worked and feeling bit better. As I'm all too aware it can take a long time to accept and just try and get on with things. I've been on this forum since AF diagnosis over 3yrs ago and although I don't often post just being able to share experiences of others who really understand can make things seem more bearable. In the early days I found it really hard to deal with. In persistent AF at the time I felt angry and upset that I now had this condition in spite of the fact I was active and reasonably fit. It was hard to accept and something which most of us can relate to. In my case none of the meds prescribed worked and made me feel worse. Not currently in persistent AF and feel a bit more positive about things. Hang on in there and while waiting for ablation consider whether there are any lifestyle changes you can make- as my consultant EP says all lifestyle changes can help. Hope ablation list starts moving again soon.

Ochg profile image
Ochg in reply tolindat15

Good afternoon lindat15, thank you for contacting me.

It certainly helps knowing others have been on this journey too - AF is so unforgiving, striking all kinds of individuals with seemingly no rhyme or reason. Like your good self, I have tried to keep as fit as I could and was active- my border collie ensured that!!

I am so sorry to hear that medication has not helped you, keeping fingers crossed you remain un symptomatic. Could ablation be a consideration to help you?

I am trying hard to eat a more healthy diet, increased fish greatly reduced red meat intake, looking at the mediterranean diet, have IBS so need to go cautiously with certain vegetables.

Take care and keep safe and stay well, bye bye for now, Shirleyx

lindat15 profile image
lindat15 in reply toOchg

Hi Shirley I have a great EP and fortunate to have had chance of 2 ablations. Even though 1st only lasted couple of months and second has resulted in some occasional SVT I'd make the same decision again- at this point unsure how successful it has been, time will tell.AF certainly requires lots of resilience and patience! Still on Flec( which I couldn't take before) and at the moment meds/ablation doing something as no longer in persistent AF-have review with consultant later this year🤞. Currently feel so much better most of the time and more active again too . The healthy eating you mention sounds like a good way fwd for you while you wait for appt. Since ablation last year I've had no alcohol/coffee as think they may be triggers for me- took a bit of getting used to be but if AF controlled then well worth it. Take care. Linda

Paulbounce profile image
Paulbounce

Hiya Shirley

You wrote

"Have just viewed the ablation procedure on the BHF website - ouch"

People on this forum have had ablations and say how well things have gone. I remember how worried I was before my first CV - it was a walk in the park. I felt silly for making such a fuss about it - honest I did.

At some point an ablation is likely on the cards for me. Will I panic before hand - oh yes. I'll bet my bottom dollar though it will be 100% fine - you will be 'under' during the whole time and won't know a thing about it.

It won't be a fraction as bad as you think - that's my promise to you. You'll see ;-)

Just one last thing. I too am an animal lover - I really am. It sounds like your a doggy person but have you considered having a cat ? They are great company and very independent eg don't need walking everyday.

Worth a thought if you are an animal lover. Great company and sort themselves out for a poo etc. If you take on a rescue animal your personal reward will be very high. Worth a thought.

Loads of best,

Paul

Buffafly profile image
Buffafly in reply toPaulbounce

I didn’t dare suggest that!

Ochg profile image
Ochg in reply toPaulbounce

Hello Paul,

Thank you for your promise about the ablation, I will hold you to that!

Never thought about a pussycat- might be a way forward, and as you say don't need to be walked everyday neither.

Keep cool,

Shirley

Janey1955 profile image
Janey1955

I too had an afib episode today maybe it’s the heat lasted 10 hours. Two flecanaide immediately it did nothing didn’t even touch it But hey ho tomorrow is another day and the weather is still good. So just try. To make the best of that x

Jane

Janey1955 profile image
Janey1955

Also I have a dog and a cat. But my cat is great I think that may be your answer

Jane x

Ochg profile image
Ochg in reply toJaney1955

Morning Janey1955,

Sorry to hear you had an episode yesterday, are you feeling a bit better today ?

The heat is very intense at the minute , I've just finished steam cleaning the kitchen floor - gosh I'm hot now, but the floor looks great!! Need to have a rest now, fan on and plenty of water, no more jobs today me thinks!!

Yes I think a pus cat could well be something to think about.

Keep cool, best wishes Shirley x

Janey1955 profile image
Janey1955 in reply toOchg

I do feel so much better today thank you Strange isn’t it how it just comes on.

Yes I would seriously think about getting a cat.

Jane x

Always good to talk it out. Enjoy life & be happy where still here 😆😁👌 No good to be too anxious makes us worse. 🤓

Ochg profile image
Ochg in reply to

Morning Booohoo123,

You are right in what you say, I am so glad to have found this community, you are all so helpful and supportive, certainly has helped me gain an immense understanding of AF.

Nice to know as well that should I have a 'wobble' support is just a few clicks away.

Keep cool, stay well and safe.

X

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