hi giys: not been on for a while... - Atrial Fibrillati...

Atrial Fibrillation Support

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hi giys

19 Replies

not been on for a while, trying to live my life without getting into a downward spiral with my anxiety, my update is that ive had my stress test, in which i got to level 4 or 5, was on the treadmill around 14 minutes i think, the outcome was it didnt set my AF off, ive also had my echo done and apart from a scary moment where my gp receptionist told me i needed to see my gp to discuss my results, everything looks fine, the reason to go see him was routine, however she made it sound like something was really wrong, ive since spoken to my EP's secretary who said everything was fine on the echo.........so so far good news, however lately ive had a few what i can only describe as big beats in my chest, nothing major but last night in work i had a few through the night...then i came home this morning and went to bed and felt a few one after another, i felt my pulse (its like second nature to do it now) and my pulse felt quite irregular, i instantle panicked and thought here we go again, but after about 10-20 secs it was normal, ive been in a panic all day now, afraid to have any sleep off a night shift and i fear ive fallen back into my anxiety and depression about this, since diagnosis ive become somewhat of a recluse, dont go out, dont seem to want to do anything whatsoever.......just want my old life back .........

19 Replies
CTG99 profile image
CTG99

Hi Juggsy,

Sorry to hear how you're feeling.

Sounds like what you're experiencing is ectopic beats - something that everyone gets, regardless of whether or not they have AF. Unfortunately, we're more in tune with our heart rhythm than most, so are more aware of them. I don't think they're anything to worry about.

I've had a look back through some of your previous posts - sounds as though you were doing well with walking and bike rides before. It's a great shame that AF is having such a big impact on your life at the moment - what is the fear that's stopping you getting any sleep? (This, in itself is probably not good for your AF!) Worst case, you can call an ambulance but is there anything else that you could do to allay some of your fears?

Try and start making small steps towards normality - as your confidence and determination builds, the spiral will go in the other direction!

Best wishes

Caroline (also in sunny South Wales!)

in reply to CTG99

hi caroline, im not sure what it is to be honest, ive always been a bit of an anxiety sufferer with my health but this has really hit me for six, not only me but my wife and two young daughters aswell, im just scared to do anything in case i go into AF once more, im not sure if what i experienced this morning was a small bout of it, if so im worried that its starting to become more regular.........im only 40 and already thinking the very worst, i know for a fact that my wife is really feeling the strain from me feeling this way.....and that also makes me feel bad

CTG99 profile image
CTG99 in reply to

Juggsy, I'm 44 (just!) and my husband was more nervous than me. I had the odd benefit that my dad has had persistent AF for years, as did his dad. He wasn't worried because his dad wasn't, and the same went for me once I got over the initial shock.

Four things really helped in building our confidence. The first was becoming familiar with the way that the Flecainide Pill in the Pocket worked. I got to the point where I could predict, almost to the minute, when the episode would end so if I went into AF as I was going to bed, I just carried on, and if I woke up after the predicted time, I'd check my pulse to make sure it had returned.

The second was making sure that there was always enough money in the house for a taxi to the hospital. My husband had refused to have anything to drink or go out anywhere in case he ever needed to drive me, so was basically putting his life on hold. Once he knew that we had a plan B, he relaxed more.

Third was getting an understanding that providing I wasn't feeling light-headed through AF, I could drive. I tended to take a book in the car with me, so that if I did get to the point where I couldn't drive, I could just sit it out.

The big thing that helped was both of us going to the AF Association's Patients' Day in Birmingham. When we came back, we sat down and discussed what we had learned together and set out a plan of action to minimise the likelihood of episodes occurring (e.g. setting a target amount of water to drink each day). My husband felt much more as though he was helping me, but also a lot more knowledgeable about the condition than he had been.

Basically, if you stop worrying, your family will worry less. Work together to come up with a plan that works for you and life should be a lot more enjoyable. I'm on medication but am pretty much back to what I was doing before. It is possible!

So, with all that in mind, what's the first thing that you are going to do as a positive move towards easing your anxiety?

Caroline

in reply to CTG99

at this moment in time i really do not know, my wife thinks i need some sort of cbt counselling to help me, however as a 6,4 former rugby player my macho pride has stopped me from doing this, im still yet to have my sleep test and 24 hour bp monitor, and have my follow up with my ep in november, in all honesty i dont really feel like im living anymore, merely just getting through the days....

Beancounter profile image
BeancounterVolunteer in reply to

Hi Juggsy

I know exactly what you mean, when I was first diagnosed, every thump and beat made me feel that my heart was going to give out at any time, that I was just waiting for the reaper man quite literally. I made out a new will, wrote letters to my kids, and even starting putting all my affairs in order. I then sat back and waited to die, as I thought that was what was going to happen.

It was around 4 months later, reading the old forum on Yahoo, and people like Bob and others telling me what a plonker I was (and me not listening) that finally into my stupid brain came the thought that perhaps AF was not the end of life, but merely another obstacle that I needed to learn to overcome. I'm very stubborn so tell me I can't do something and I will move heaven and earth to make sure I do it. And that's what happened with my AF. I made every mistake you can think of, I bought machines, I was self monitoring myself (and worrying) to death. I thought AF ruled me and my life.

Truthfully now some 3.5 years on I am still in AF persistently, but I don't let it control me, I control it. Sure I have my bad times and things get me down, but coming on here and seeing loads of people much worse than me reminds me how lucky WE are. Being macho is fine, and you've been the rock your family can rely on for many years, the good news? Nothing is going to change, except in your head. You will still be that rock, soon you will get the right drug regime to control your AF or maybe another treatment plan such as ablation which will make you feel better, but YOU are still in control boyo, not your AF.

World Cup starts in a few weeks, make that resolution now to enjoy every game despite your AF and as we both know that England will make the final ( :) :) ) I invite you to come and enjoy that match with me in my local, and we can laugh about our conditions together.

Be well

Ian

Buffafly profile image
Buffafly in reply to

I've been in your wife's position and believe me I cannot express how frustrating and stressful it is. Please take any help available if you really love your family (and I'm sure you do) - its the macho thing to do!

CTG99 profile image
CTG99

Sounds like macho pride alone isn't working?! ;) Maybe it's time to try something else?

See what the other tests come up with, but be prepared for everything to come back clear. When you see your EP, talk about your medication again - if you're feeling sluggish, it may be that a change would help.

Caroline

in reply to CTG99

im not currently on any medication only 2.5mg of bisoprolol as a PIP approach, i did wonder if my 10 -20 second episode this morning was AF, but it then went, im not sure if it can be that brief or not

CTG99 profile image
CTG99

If it's any help, my AF nurse told me to wait 30 mins before taking the Flecainide to make sure it was an AF episode. I don't think 10 - 20 seconds is AF.

Thanks both, I'm hoping it wasn't an af episode, however it's my character to always think the worst, my wife and I are going to London for a couple of days on Thursday, hopefully it won't affect our trip

CTG99 profile image
CTG99 in reply to

It won't if you don't let it!

If you have some time while in London, have a look at the Treasures Room in the British Library (near St Pancras Station). It's free entry and has loads of original documents on display (e.g. Captain Scott's diary, Handel's score for the Messiah, the original drawings for Alice in Wonderland, Mappa Mundi - you name it, it's there. We thought we'd allow 30 mins and were there for 2 hours!

Enjoy your trip!

Caroline

Beancounter profile image
BeancounterVolunteer in reply to CTG99

Caroline

Will you please stop giving away our secrets, us Londoners will have no retreat from the rubber-neckers. :) :)

Ian

CTG99 profile image
CTG99 in reply to Beancounter

And I've barely even started! :)

Unfortunately, the champagne bar at St Pancras happens to be oh, so close to the British Library - such a shame!!

Caroline

Alil profile image
Alil in reply to CTG99

Excellent cafe too!

Just retired after 28 yr. career providing psychotherapy including for those with chronic medical disorders. You would be pleasantly surprised what even a few sessions can do for your concerns. There are a variety of techniques besides cbt. Several of my most successful clients were big sports-type guys. Therapy can also help coordinate a plan with your spouse and family.

Well I'm signed up for 6 sessions of cbt, hopefully this will help with feeling down about this, and hopefully my little episode wasn't an af one and I can move forward

CTG99 profile image
CTG99 in reply to

That's brilliant! Well done! :)

Caroline

Vony profile image
Vony

Hi Juggsy. I feel for you reading this post and i can totally relate to how you feel as i also felt that way once. But not any more:) i am in AF every day now but only for hours as opposed to permanently. In the beginning of my new life with AF i used to analyse every heartbeat. I sometimes felt that i was on the outside of life looking in as an observer and not enjoying it. That was until i got this into my head:

AF WILL NOT kill you.

It feels highly unpleasant but that is all it is. Unpleasant and disruptive. Yes, it can reduce your quality of life at times but if you are only having short bursts then enjoy all your lovely time in a normal sinus rhythm and just ride the storm when/if AF raises its annoying head. If you have tendency towards anxiety and tend to think the worst, CBT or Acceptance and commitment therapy might be helpful for you. And it is macho to feel that fear...sure fear comes from our primitive instincts and that feeling of need to protect yourself. But the anxiety you describe is excessive and it is that which is reducing your quality of life, not the AF. Get back into your life. Make the most of the CBT you are going to and very best wishes. Keep us posted:)

bridget54 profile image
bridget54

Wow this site is amazing. You all sound so positive but I can completely see where youre coming from Juggsy. I to have AF and SVT but after my ablation in April thought and hoped with all my heart ( excuse the pun ) that it was all gone. Unfortunately I dont think it is but I wont bore you with that.

I too have felt very low at times but I try to listen to the volunteers on here and my EP and get on with my life.

Im hoping to go on a weekend cruise to Channel Isles next month and New Zealand next year!!! Yes I might have an AF attack if I do Ill get it sorted. Then again maybe I wont!!!!

Enjoy your life Juggsy. It is a horrid feeling but as everyone says it wont kill us!

Small steps first ( or in your case ....large ones probably lol ).

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