A physical illness becomes a mental one. - Atrial Fibrillati...

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A physical illness becomes a mental one.

Mejulie69 profile image
19 Replies

This is not new territory for this forum, but I thought I’d add my experience as a newbie to AF and anxiety.

I have never been an anxious person. I was in the British Army for 10 years, at times in charge of 100+ soldiers. I have spent over a year of my life in Iraq when conditions were less than friendly. I have jumped out of planes, paraglided off mountain tops, skied, abseiled off dams, scuba dived, run and cycled over mountains, and all sorts of other things. None of it ever bothered me.

Sure, I have always been a stickler for punctuality. I become agitated if I or others are running late to an event, but it has never been something I dwell on. I’ve always made an effort to tow-the-line when it came to school, university lectures or work – I never like to annoy or disappoint others. And I’ve always found watching pranks uncomfortable because I don’t enjoy watching other people suffer stress. So, yes, perhaps, I have always had a low level of anxiety within me, but it has never got in the way of my life.

In the last 2 months since discovering I have AF, everything has changed. I am now totally convinced that the majority of my symptoms are pure anxiety / panic. The weeks of worrying about having a stroke and dying (mostly unfounded) have sent my nervous system into ovedrive, and my subconscious has started to overwhelm my conscious. The sudden dizzy spells when in NSR, the tingling down the arms, the fogginess in the head, the adrenaline in my body when I go for a bike ride, the spells of paranoia after taking my Apixaban. It took me weeks to finally work out that it was psychological, and now I am getting close to full proof. On discussing my symptoms with my GP on Monday, I was put on 2mg of Diazepam (3 times a day). Within 1 hour of taking the first pill, having spent the previous weekend in a horrible place, I felt completely normal again. The fog lifted. The pins and needs stopped, as did the paranoia. I went back into AF on Monday night (and remain there as of Wednesday morning), but I feel totally fine about it.

Last night I was feeling so normal that I decided not to take the third Diazepam of the day. It is an addictive drug, and I don’t want to end up with yet another problem. On driving to work this morning, I felt the same fogginess in the head developing and anxiety building. Makes sense that the effects of the Diazepam have worn off since my last pill at 3pm yesterday.

So, now I need to look for others way to control this anxiety. The Diazepam is masking it, but I can see that it is still there. I know there are plenty of methods and techniques out there. I have already started meditation with the Headspace app. My employer has been very good to me and I will start counseling sessions next week. They have also said that I can take some sick leave or work from home if I feel I need to.

Whilst I wish that I didn’t have to deal with this problem, I am extremely happy to have discovered the issue fairly early on in my journey with AF. I hope within the next few weeks and months, I can get it all under control and start to live a normal(ish) life again.

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Mejulie69
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19 Replies
Beancounter profile image
BeancounterVolunteer

Hi Mejulie

I can only say really welcome to the club you never wanted to belong to.

You are obviously a strong intelligent woman used to being in control of your life, and suddenly out of the blue comes this news that that pump in your body, which you have relied on and never really thought about is not working "properly"

All I can say, is not only are you not alone, but EVERYONE no matter how "in control" or composed you are gets this anxiety.

I can only relate a similar story, for me diagnosis was like being hit with a brick, no matter how many times I was told you will not die, it's not fatal I simply did not believe it. I re-wrote my will, I put my affairs in order wrote and left letters for my children, my anxiety (or is it depression) reached massive proportions.

It took this forum and it's predecessor to get me out of that, eventually I actually listened to BobD and others who had been there and done it, and eventually when I started to believe that, everything started to fall into place.

However there is one thing I may have to call you at, there is no doubt that anxiety and panic are triggers for AF, but they are that triggers, there has to be an underlying propensity for the AF, pure anxiety does cause heart flutter and even tachycardia, but not usually AF itself, that has it's probably unknown cause elsewhere.

Having said that, there seems to be no doubt that controlling the anxiety will lessen the severity and the frequency of AF attacks, but it's unlikely to remove them completely.

You are obviously a very capable and intelligent woman, and treating and dealing with your anxiety will only help. And may I commend you on such a rapid response to that, it took me at least twice as long as you to come to terms with dealing with that.

But please continue down the medical path as well, you should see an EP and get some underlying treatment for the AF itself, your excellent self help will only make things better, but you do need some medical treatment for the AF itself as well.

You will very soon learn to live with AF as many of us have done, dealing with the anxiety is often the first step to this, the second step is treating it. You will live a "normalish" life again very soon

Be well

Ian

BobD profile image
BobDVolunteer in reply to Beancounter

The student becomes the teacher. The force is strong in this one.

Mejulie69 profile image
Mejulie69 in reply to Beancounter

Hi Ian, thanks for taking the time to write such a long reply. You are completely correct - I fully acknowledge that regardless of the anxiety, I have a physical illness that needs treating too. I am currently in a queue to see an EP. My cardiologist has recommended ablation straight off, and I am happy with that decision as I would like to return to sport as soon as possible. Best regards.

Finvola profile image
Finvola

Hello Mejulie - the words that spring into my mind on reading your post are - stress and precision-minded, both of which I can thoroughly relate to and both will certainly drive AF. In my case, precision and the highly developed ability to do umpteen things at once (all perfectly, of course) caused my high levels of stress. Like so many of us, I didn't think I was going to die after diagnosis - I knew I was going just to drop dead.

Mindfulness, relaxation and the concept of manana, manana - as well as a good EP - set me fairly straight. This forum and the support of others - many of whom are so much worse than I - was the best thing that happened to me after diagnosis.

The idea of losing one's lovely way of life is something I found so hard to take in and that devilish thought plagued me, until I realised that it hadn't been lost, but merely changed.

I hope you can find the best treatment which suits you - do read, read and read some more about your options and the role of an EP (electrophysiologist) in helping patients such as us.

Best wishes

Mejulie69 profile image
Mejulie69 in reply to Finvola

Thank you. A large part of my problem is that physical exercise has always been my biggest hobby. During the last 3 years, it became my only hobby. When I was first diagnosed with AF, my GP advised me to stop all exercise until I had seen the cardiologist. So then I became fearful of doing exercise. I missed the endorphins badly. I have only recently been advised by my cardiologist that it is perfectly OK to exercise when in NSR. I have just this morning learnt that it is OK to do some light exercise whilst in AF. I already feel better for knowing that. So thank you very much for your comment, it makes a lot of sense.

Finvola profile image
Finvola in reply to Mejulie69

That's good news about exercising - just listen to your body as our bodies tells us when enough is enough.

Peddling profile image
Peddling

Don't know where you live Mejulie, but do consider joining us at the London Nosh n Natter on 16 Sept. the restaurant is within walking distance of Waterloo main line/underground station. Sharing our experiences over a plate of olives etc is enjoyably reassuring, informative and helpful.

I have done the diazepam shuffle too, still do on occasions when I can't sleep through the beat of my heart or the rubbish that's in my head. I find it most helpful if I wake very early and just know that I'm not going to be able to get off again.

There are other options though, in the form of citalopram. It doesn't have the instant effect of diazepam and can take upwards of three weeks to kick in but It's not as addictive as the latter.

Best wishes and maybe see you on the 16th.

secondtry profile image
secondtry

Hi Julie, yes all good what you are doing including consulting the sages here (that excludes me). I would add a couple of things though, your Vagus Nerve could be a big part of the problem and probably needs de-sensitising, meaning in your case you need to scale down that exercise level and step up the meditation stuff irrespective of any ribbing from others. Try some completely different hobby to compensate - what you always wanted to do and haven't.

It seems quite common if you present to medics that 'your life is exercise' you are more likely to be recommended an immediate ablation. I don't buy into that as necessarily the best route, there are still risks and no guarantee (90%+) of success.

People assume changing a lifestyle is the worst possible scenario, I disagree it can be and has been for me excellent. More excellent hints from John Day's book (an american cardiologist) 'The Longevity Plan' - if you don't buy it and I recommend you do you can get a good flavour if you listen to his interview on his Twitter feed @drjohndaymd Sept 4th tweet.

Hope something above helps you.

Mejulie69 profile image
Mejulie69 in reply to secondtry

Thank you very much for the advise :)

Mejulie69 profile image
Mejulie69 in reply to secondtry

I definitely need to research this vagus nerve. Before I started diazepam, I felt like my entire nervous system was hyper sensitive. Driving, talking, walking, riding, even writing about it on this forum - everything was making me tingle in an unpleasant way. Perhaps this is all being driven by the vagus nerve?

secondtry profile image
secondtry in reply to Mejulie69

Lots of good tips have been made, but best to do one step at a time. It seems you should start with anxiety and try one possible solution at a time and keep a written diary, that way you know what works.

That said I was in such a panic at the start (3 years ago) I did absolutely everything and due to the hypersensitive issues you describe tackled Electro Magnetic waves as well, now I am more stable they are no longer a concern.

Lastly, do make sure you redouble your oral hygiene efforts and sort any dental problems out, they are pretty widely accepted as a strong contributor to AF.

Mejulie69 profile image
Mejulie69 in reply to secondtry

Have to say, I have never heard about the oral hygiene connection before! I have plenty of metal fillings and root canals but no current issues. Probably find out some day that the lead in the old metal fillings made us all very sick!

Maggimunro profile image
Maggimunro

Hi Mejulie, welcome to the forum. So much good advice has been given in the previous replies but I just want to ask you a question: "Is your sleep disturbed by your anxiety?"

I hate taling pills, like you. But I also hate the feeling I have after a disturbed nights sleep (and there is a strong link between AFib and poor sleeping). What works for me is to subscribe to Audible recorded books, download them onto my iPad and, if I am restless at night with my mind going around like a washing machine on spin cycle, then I simply plug in. Hey presto, I wake up refreshed several hours later and several chapters further on into the story.

The other point I want to make is, have you been diagnosed with SVT, rapid heart beat?? The symptoms of left arm tingling and dizziness, fainting are typical of that, and, strangely enough were relieved in my case by getting up and walking around.

Just a couple of thoughts for you to mull over.

Mejulie69 profile image
Mejulie69 in reply to Maggimunro

Hello, thanks for the reply. I haven't been diagnosed with SVT but that's not to say I don;t have it. I have had a couple of heart racing moments which I have put down to panic attacks when having a sudden dizzy spell. With regards the sleeping, I have had a couple of nights when I literally did not get to sleep once (due to anxiety), but other than that, I have been sleeping fine. I shall try your audible book idea out though, so thanks for that. With regards the tingling, mine starts when I have been walking around for 20 minutes. Since taking Diazepam, it has completely gone, so at the minute, I am putting it down to anxiety.

Maggimunro profile image
Maggimunro in reply to Mejulie69

Sounds like you need to wear a 7 day holter to capture exactly what your heart is doing..

Courage mon brave.

Hatty_36 profile image
Hatty_36 in reply to Maggimunro

Thank you for that. I didn't realise there is a strong link with AF and poor sleeping! I usually wake up at least twice a night but of late have also woken at 5 am and found it impossible to get back to sleep again. I also sweat profusely during the night and have a towel on the bed to soak up this but recently that is very damp on waking. Does anyone associate this with AF too please?

opal11uk profile image
opal11uk

Hi Mejulie,

Read your post with interest and it almost mirrors mine, always under pressure and in the firing line, thinking you are absolutely in control of all situations and the leader of men, not wanting to disappointment, having high achievement goals, fear of failure, a woman in a mans world.........need I go on...... I wasn't in the Military but I too had a large workforce and all that it entails and a heavy and projected workload, working to deadlines and so on and I took this all in my stride and felt I coped with everything they could throw at me extremely well, I was flying and raising a family at the same time lol however my heart knew differently and the PAF was becoming a real nuisance, yes, I was coping and doing well in my career but my heart was not, the pace and the anxiety of achieving was taking over. My AF eventually lead to a stroke and I was retired out of the service at 56, my A/F continued on its journey but at least I was covered by Warfarin and heart drugs after the stroke. Ultimately I too succumbed to ablation I wanted desperately to come off all drugs, and it left me a darn sight worse off than before to the point that my heart was on go slow and then I was at risk, not from the rapidity but from failure to keep an acceptable heart beat and I had a Pacemaker fitted and life is now good, yes still controlled with drugs and not racing around anymore but when I feel pressured I don't go into PAF so as a consequence life has taken on a different hue, I am sleeping well, take moderate exercise walking my dog and generally enjoy being retired.

In conclusion, I feel that the steps you are taking with counselling, the recognition of why this happens is a positive step forward, you could couple this with Yoga, Tai Chi etc., where you can completely relax (something I could never do) and hopefully get things under control, easy to say I know but mind over matter. You have obviously been a great achiever and have the ability to think things out and have structure and strategy so if you can apply this to your condition then I think you will be able to get order back into your life. The one thing I hate and have always hated is not being in control and sadly that was my downfall I believe because I thought I was in control but my heart new different. Good luck in whatever you do in the future.

Bagrat profile image
Bagrat

Think all the aids for managing anxiety have been covered. I was recommended Human Givens therapy as I was also having symptoms put down to panic attacks. I had three sessions ( very sceptical about it) and it made a tremendous difference.

Just a point with my ex nurses hat on. Diazepam sticks around in the body for a longish time so the effect can build up over a few days leaving you feeling tired. You are on a very low dose but you are right it is a sticking plaster treatment. It reassures you that you can feel normal again so has it's uses.

craigcarda profile image
craigcarda

Wow! I know this posts were a while ago but I love the shares and education I received from it! I too thought i was invincible for a long time. And 2 years ago after brushing off episodes of my afib had a aortic dissection. After I survived that they told me it looks like you were on your way to afib before this and probably had it undiagnosed. T They figured i had thyroid issues before not heart issues. Well lets just say it's been a roller coaster ride since. I developed anxiety and recovered after a couple weeks. Then changed medicine and was fine for months, then another episode. I don't know how Long im in afib or if its anxiety. Each time it took longer to shake the feeling. Main symptom of just dizzy not being able to walk. I would fight through and Then sleep was a issue, always scared and always looking at symptoms online checking my bp. Then after a week or 2 back to normal for about 6 months! Best i ever felt! Working 50+ hours, sleeping 6hrs, enjoying life and bang! Restless and can't sleep...this episode I went 8 days and still fighting off anxiety trolls. After the visit with doctor i have ablation scheduled in December. Hope it works. But i just wanted to share and thank everyone for making me not feel so alone on this ride. I can't tell you how much i appreciate it with the advice and shares living or just coping has become easier and that's priceless!

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