The blues..: Sorry I haven't been on... - Atrial Fibrillati...

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The blues..

wilsond profile image
41 Replies

Sorry I haven't been on forum much the past week but I've been not much good company.

I've given myself a good slap and pointed chin up!

Reason ,I'm still in AF or Flutter or Something Else 24/7 . Have only had one Kardia normal reading for about 6 weeks.

This is despite upping to 100x2 flecanide and 3.75 Biso.

I'm not sleeping well at all.

I awake with it so I'm hardly stressed out then( my usual trigger)

I really can't put it down to anything in particular. Home and family life all ok

I have an appointment with Proff O ,30th October,and also awaiting an appointment with Nurse Led Clinic before then .( She suggested it ,as often Proff O is around on those days and could be brought in)

I have not been offered a CV by anyone . I was PAF and now obviously moving on.

I had a long episode of AF in March which eventually resolved itself

I wondered why I have never had a CV? Does anyone have any idea ?

Hope everyone is ok in this ' new normal' that isn't normal !

I wonder how much we are affected unconsciously by all this. I know I worry about my husband,still working and diabetic.xx

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wilsond profile image
wilsond
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41 Replies
jeanjeannie50 profile image
jeanjeannie50

Ooh, sorry to hear this.

How are you feeling physically with your heart out of rhythm? If not too bad then I would push yourself a little, but gently.

I've often mowed the lawn, full of self pity because there's only me to do it. I do a bit then rest and eventually its all done. Then I've sat that evening thinking my heart feels sore and I should never have done it, but a little later my heart will be back in normal rhythm. You could even try very slowly walking up a hill. Or get some friends around who make you laugh and have a glass of wine (just one). Chatting happily has reverted mine too.

As soon as I think about my heart and hone in on what beat it's doing, it never fails to oblige with an abnormal one. My mind is certainly a trigger for me as are those dreaded artificial additives in some food and drinks.

With me it's the AF nurses I see that arrange a cardioversion.

Wishing you well.

Jean x

wilsond profile image
wilsond in reply tojeanjeannie50

Thank you Jean ! I've arranged to see god daughter this week and my sons birthday too. So things to look forward to

I'm expecting a call back from UHCW later...see what they say. Thank you. Xx

doodle68 profile image
doodle68

Hi Wilson 😊 I am really sad reading your post 😒 I feel we have been walking the same path with you a little ahead of me ..and that makes you post scary.

Maybe if you had called an ambulance after a couple of days of continuous AF and gone to A&E you would have been offered a cardioversion.

I wish there was something I could do or say to help you , all I can do is to send you a sisterly hug ((((hug))) 🌹

wilsond profile image
wilsond in reply todoodle68

Its much appreciated Doodle. Feel bit better for writing it all down . Dont like talking about it too much!

I'll keep you posted xxx

Paulbounce profile image
Paulbounce

Hiya Wil.

I'm really sorry to hear you are on a 'downer'. I understand how you feel (I feel exactly the same).

There's nothing I can say or do to help you - only try to relax as much as you can (easy to say I know).

It's still good news you had one normal Kardia reading though - shows things can improve.

I truly hope you start to feel better soon. Please keep me and other forum members 'in the loop'.

Loads and loads of best,

Paul

wilsond profile image
wilsond in reply toPaulbounce

Cheers Paul,I will indeed. Stay safe xx

Finvola profile image
Finvola

I'm really sorry to read how you are suffering and am amazed that you are as upbeat as you sound - it must be awful for this to continue so. I cannot help with CV information as I've never had one but I feel you should perhaps push for help/advice and that appointment as early as possible. Perhaps even a cancellation?

Stress is certainly a factor in our problems and at the moment I for one have 3 major stressors, about which I can do nothing - COVID and worsening Brexit on the future here in N Ireland being two of them. Even if one feels calm and relaxed our brains think otherwise! I frequently find my fists clenched tightly but only after I've noticed my heart rate going oddly.

I agree with Jean that friends laughing with us does help a lot and the sense of achievement in doing little jobs helps us get through some of the misery. I hope you can get some resolution quickly and return to NSR too.

Big cyber hugs and wishes. xx

wilsond profile image
wilsond in reply toFinvola

Thank you Finvola! Yes am pottering about ,pacing myself,etc

Indeed the times are so strange . We look forward to better days...

I'll let you know.xx

Finvola profile image
Finvola in reply towilsond

I always try to think that when things are down, they can only go up. Fingers crossed for you. xx

Kaz747 profile image
Kaz747

Sorry to hear you’re struggling with your heart and your emotions. It certainly is challenging and you know you can your heart out on this forum (pardon the pun). We’re here for you xx

wilsond profile image
wilsond in reply toKaz747

Lol Kaz! Yes it's a good place to moan groan but also have nice support n chats xxx

Ochg profile image
Ochg

Hello Wilsond,

I am so sorry you are feeling so down, it can really take a hold at times (I know only too well).

Fingers crossed, but I am sure you will hear from the nurse led clinic real soon.

I do hope you start to feel a bit better soon, here is a big virtual hug 🙂 and a bunch of virtual flowers 💐 especially for you.

I know it’s easier said than done but please try to relax as best you can, and know we are all here for you.

Take care,

Best wishes,

Shirley xx

wilsond profile image
wilsond in reply toOchg

That's lovely Sheila thank you very much xxx

Kevinder23 profile image
Kevinder23

Try to relax I know it’s easier said than done , but this will pass , you will soon be on other side of this episode I’m sure it will get sorted one way or an other 😘

wilsond profile image
wilsond in reply toKevinder23

Will do thank you xx

Buffafly profile image
Buffafly

Sorry I didn’t see this before - you know why .... Of course I can sympathise, I can’t imagine what 6 weeks of this must be like. I was awake at 4 o’clock this morning and hardly slept after that. You must be feeling like a wet rag, as my mother used to say. I’ve got the feeling AF has been down graded in importance unless you are dangerously ill - feeling miserable is not good enough. Some people here have had lots of CVs - ‘extremely symptomatic’ seems to be the magic phrase. If not it’s a long wait.

Big hug 💞

wilsond profile image
wilsond in reply toBuffafly

Thank you Buffafly! I really hope you are in a better place too. Yes I am fed up !

Posting soon with an update...x

JaneFinn profile image
JaneFinn

Aw Wilsond, I feel for you - no wonder you’re feeling low :(

I don’t know about you but when my heartbeat isn’t right, I feel in a constant state of low level tension. And that in turn, I think, stops my heart settling. There doesn’t have to be any big stress in my life (though underlying worries, like in this time of COVID I'm sure, are a contributory factor too). If I can break the cycle with something that really takes me out of myself into a happy place (a good laugh is my best antidote!) it can sometimes help. I do hope your family things this week are a tonic :)

Sending lots of love and a big hug xxx

wilsond profile image
wilsond in reply toJaneFinn

Thank you dear xxx

cuore profile image
cuore

I agree with Doodle68, can you not go to A and E and request a cardioversion? I'm reading you are in persistent AF for 6 weeks. Tell them that it's urgent because AF begets AF; the more you have the more you will get, plus tell them that rotor areas are forming -- up to 4 during the first 6 months of persistent AAF.

wilsond profile image
wilsond in reply tocuore

Thank you. I am off to see my consultant as a private patient TODAY! My GP rang to see if he could get me seen quicker yesterday pm.

I shall mention what you say. I have written it down.

Thank you xx

Buffafly profile image
Buffafly in reply towilsond

I hope you have an encouraging consultation and look forward to reading your report X

Fibber222 profile image
Fibber222 in reply towilsond

So happy for you that you are seeing consultant today. That alone hopefully will have lifted your sadness a little and maybe more especially if he can help you get back into sinus soon. Fingers crossed for a good outcome.

JaneFinn profile image
JaneFinn in reply towilsond

That’s so good to hear! Hope it’s really helpful- thinking of you- let us know how you get on xxx

wilsond profile image
wilsond in reply toJaneFinn

Will do x

cuore profile image
cuore in reply towilsond

I hope your consultation went well. I believe the following article about rotor development was first presented in 2014:

afsymposium.com/library/201...

Dr. Haissaguerre began in 1994 to pioneer the ablation technique . He directs the LIRYC institute which brings under one roof clinicians of all specialities devoted to solving the arrhythmia puzzle.

bassets profile image
bassets

So sorry you are feeling down. This strange year has done nothing for anyone has it? I feel we all have enough worries without the virus hanging over us. I hope you will feel better with some company soon. Thinking of you x

wilsond profile image
wilsond in reply tobassets

Thank you xx

Mark_tourguide profile image
Mark_tourguide

Sorry to hear man. Can’t offer much help as this is all very new to me - but maybe worth your knowing that your post is helpful to people like me - at least! I hope things pick up for you. Great support on this site!

wilsond profile image
wilsond in reply toMark_tourguide

Cheers Mark!

LordGabriel profile image
LordGabriel

It’s horrible feeling blue isn’t it? You have to be congratulated for saying it out loud ....hopefully that’s helped a bit? Sometimes writing things down even if not published helps.

This nightmare year and what’s to come are not helping ... so give yourself a break. We all have felt blue this year.

So mix AF and Covid-19..... just plain miserable!!!

Hopefully you’re appt will shed some light?

The nurse arranged my CV so can you ask to see a specialist nurse?

Once that old heart starts behaving, it’s like a new day! Soon for you I hope ❤️❤️

wilsond profile image
wilsond in reply toLordGabriel

Thank you for your support and kind words! Will update xx

irene75359 profile image
irene75359

So sorry to hear your woes, and please don't ever feel you have to apologise on here, I have had so much comfort from forum members including you so please cut yourself some slack when you are feeling so miserable. And yes, I think living in these strange times is affecting all of us. My six-year old grandson restarted school on Monday and my daughter had to pick him up yesterday - a COVID case in his year group so back home for at least a couple of weeks. My heart did an odd leap of anxiety.

Hope you get sorted out very soon xx

wilsond profile image
wilsond in reply toirene75359

Thank you Irene ! Glad I've been able to offer support to you too.

Oh what a shame grandson back off school again . The children must be so confused. Xx

Visitingcat profile image
Visitingcat

So sorry you’re feeling like this, I can really sympathise.

I was stuck in afib last year and the slightest effort (stood washing up?) brought on awful trapped wind in chest feelings for hours after.

My gp gave me an urgent referral to a cardiologist.

I got on the waiting list for cardioversion when I went to a & e and they kept me in overnight and I saw a consultant.

I felt so wretched and disabled by it I broke down and cried once with my warfarin nurse while I was waiting for my cardioversion. I’m on apixaban now and I miss her so much, she was so kind and understanding.

I said I was so desperate for one that I’d have it then and there with no anaesthetic if I could, I don’t know wether she said anything to cardiology but that afternoon the cardio nurse rang and arranged it the week after.

It’s nearly a year ago now and this year was supposed to be going to make up for it and we would have lots of short breaks to make up for not being able to go anywhere : ) sadly not.....

I do hope you can get help when you go in today, fingers crossed for you that you can feel like yourself again soon, all best wishes 💐

wilsond profile image
wilsond in reply toVisitingcat

Oh visiting cat you sound just like I feel now ! I shall make sure I get my situation across!

Thank you will update xxx

ETFCfan profile image
ETFCfan

So sorry that you are feeling so down, no suggestions but hopefully seeing the doctor today will give you at least some suggestions. I’ve had down times and honestly think the current COVID situation doesn’t help at all. I need things to distract me and these aren’t available for me now. I do find that writing your feelings down even if you don’t do anything with it can’t help. I’ve written so many posts on my FB page and deleted them and felt a sense of relief after. Hope you get some answers x

afafaf profile image
afafaf

Hi wilsond, very sorry to hear this. I had an ablation in June '16, but came right off meds and was very mule-headed, refusing all meds, and was basically in afib so much of the time I eventually relented this spring and went on Flecainide, which helped massively....

Anyway, just to say I am writing to let you know I know how worrying it is. Are you on any kind of blood thinners? Or are you just on Flec and Biso?

A week or so ago we were on vacation....the last several days of the holiday I was afibbing like crazy, and it carried on for days after we got back....and then turned into aflutter....I was at 137 bpm at one point and in a simultaneous panic attack that almost sent me to the emergency room....I'm now on the brink of asking my doctor about thinners, as I was pretty stressed out thinking I might just keel over at some point. Very sorry to hear you were in that state for that length of time. I was in it for ~a week, give or take, and it is scary.

It's sad when you've had long periods where your faith in Flec is sky high - I was annoyed at myself for not getting on it sooner, as it worked wonders - and then all of a sudden you're in the hell.

Stress is my main trigger, and alcohol if I indulge too heavily in the stronger IPAs....but ultimately, I believe stress is the biggie and pretty much underlies everything. A friend of mine suffered terribly with panic attacks and sent me this video:

youtube.com/watch?v=ILMP8yn...

Dr. John Bergman.....I've been doing some of the slow deepish breathing....it definitely works with the panic mode at least, but I had to wait for the flutter to take its own sweet time. I think if you can practice the breathing (deepish, slow, in through nose (smell the flowers) out through mouth (blow out the candle) it can help you head it off at the pass and prevent an episode...

Good luck....I haven't been on here in ages, but my recent experiences sent me here today....

wilsond profile image
wilsond in reply toafafaf

Thank you do much for your thoughtful and kind words. I have saved the video looks great. I just posted an update.. it was to do with not taking flecanide properly...!!!

Look after yourself too.

Ps yes on anti coagulation ( apixaban)

afafaf profile image
afafaf in reply towilsond

There are probably better videos than the one I posted, but that doctor is great for breathing to relieve stress and anxiety.

I have to look into going back on Apixaban....I've been good for a few days but I don't want to go through what I went through again...I wish you continued good health.

Ducky2003 profile image
Ducky2003

I had my 3rd cardioversion at UHCW 2 weeks ago and I was offered them all 3 times. Seems strange you havent been so perhaps there is a reason but if I were you, I would ask. I personally wouldn't like a cardioversion done in A&E. I'd rather it be done in a cardiology unit in a more controlled setting. Hope you can get something sorted out.

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