Hi all, I haven’t posted on here for 18 months but always read posts & have picked up lots of useful info. I now have a question, but a bit of background first. Since being diagnosed with paroxysmal Afib 20 months ago I’ve been taking Flecainide 50mg x 2 per day & 1 x Rivaroxaban 20mg. That seems to have done the trick as I’ve been well with no episodes. It did take me a long time to come to terms with the Afib but took onboard comments I read on here & was finally able to go to bed at night not expecting to be woken up with an episode, ditch the heart monitor & oxometer & forget about it.
Then last week bam, middle of the night woken up by heart doing summersaults, usual thing. I took extra Flecainide, stayed calm as per your advice & waited for it to pass, fortunately it settled after about 3 hours. Since then however I’ve been feeling very jittery, not just mentally but physically, feel as if I’m shaking all the time. Also back to the heart monitor, constantly feeling my pulse etc. I can feel my pulse in my ear very strongly so am aware of what my heart is doing all the time (thankfully it’s still beating!) I try to distract myself but at the moment nothing’s working & I’m just waiting for the next episode.
Of course I know everyone is different, but was wondering if anyone felt like this for a while after having an Afib episode, or am I being too sensitive?
Although I live by myself, I have family & friends nearby but don’t feel as if they fully understand what it’s like to live with this, you guys do so thought I’d just ask your opinions.
Hope you’re all safe & well
Best wishes
Jen
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Roobydooby
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Jen relax you are normal! If anybody ever comes up with an answer as to how to stop worrying let me know. The only way I know is distraction and being as busy as a busy bee with more jobs to do before lunch that the stars in the sky. Night time is rubbish though I agree especially if you have pulsetile tinitus.
Have to agree Bob, why I'm so sensitive at bedtime and can hear my pulse through my ear against the pillow is the most frustrating of things especially as before being diagnosed I can't remember ever hearing it.
My old neighbour used to phone us up accusing us of playing rock music in the middle of the night because she could hear the beat through her pillow! Unfortunately I hadn’t heard of pulsatile tinnitus then....
Hello again Roobydooby (love your name). I have not had an AF episode since diagnosis in April 2018, possibly a couple of 20 minute undiagnosed episodes before that over the years & loads of ectopics in between so I have no doubt that I will feel exactly as you are now. It must be even more scary living alone. Thank goodness we have the experience of the forum to guide us but I know that I am still a novice when it comes to the AF beast & hope it doesn’t rear it’s ugly head any time soon. Take care 🙂
Tamla thanks for your reply. You’re right it is a beast & one I thought I’d learned to live with until last week! Back to the drawing board! Hope you’re safe & well.
Omg when I was first diagnosed I was living in a hotel. I used to go to bed at night thinking the room staff would find me dead in bed the next day!! Then I had a cardioversion and I went back into rhythm for 13 months. At the beginning I was constantly checking my pulse and making sure I was still in rhythm.... it faded of course and I ended up not even thinking about it. Till March this year I ran for a bus and bam! Back it came. I got back into rhythm the next day luckily but yes, went back to constant checking...
I think it’s the ‘rules’ of AF!!
The panic will go.... but you are def not alone in your thoughts!
Oh I’m fine thanks. I have a hospital appointment next week which was booked on the back of my A&E trip in March. Hopefully the appt goes ahead. Not sure it will though.
Good to hear that you are doing OK again. I too have a follow-up appointment coming at the start of June after a cardioversion earlier this year. I don't want to go. Not sure what to do about it. It's a long way (Oxford) and the parking at the hospital is terrible so I've always used park and ride. No way am I getting on a bus at the moment! So not sure what to do.
I'm not too bad thanks. The cardioversion did it's job but has left me with a higher heart rate than I wanted, which I don't understand. And I think I need to switch away from Bisoprolol, I don't think its suiting my legs and feet, which hurt a lot. I had hoped to be able to stop the beta blockers afterwards, but so far only Digoxin stopped. Apart from that I'm fine.
I want my appt.... I don’t mind getting on a bus. They are very empty here in London. They run so many so I have choices luckily. I think I’ve had the dreaded virus anyway... so I’m not worried.
Maybe a phone consultation about your drugs could assist?
I think I'm going to have to ring my GP for advice. I could get an ECG done at the surgery ahead of a phone consult perhaps.
I've been extremely cautious about this virus. I have practically been shielding. I am hypothyroid but not improving with medication and I have had pneumonia years ago that has left me needing an inhaler sometimes and colds always end up on my chest. I'm not taking any risks. I do go to work but I work alone in my own space so I'm fine there provided delivery drivers behave. I haven't been near a shop or others since before lockdown started. I see no reason to risk a long bus ride x 2 and a visit to a clinic right now. My husband definitely doesn't want me to go for all the same reasons plus he doesn't want to come into contact with it either.
Hi Jen, you have my sympathy as AF is a horrible condition. An attack of it can leave you feeling anxious and totally drained for many days afterwards and there are times when there is no way you can ignore it.
I remember my heart bouncing around in my chest in the middle of the night and thinking I would surely die or have a stroke. What I used to do was text my daughter and ask her to check on me in the morning, that would calm me a little. You know the more anxious we get, the more our hearts play up. It's a fact I can guarantee after having AF for 15 years. Our minds are so powerful.
Now I just accept I have it, don't keep checking my pulse and as Bob suggests really try and push any thought of it from my mind. However, with a really bad attack I don't think that can be done. Bear in mind that some people have no idea what a bad attack is. A bad attack is only what we have each experienced at it's worst. I search YouTube on my mobile phone for a slow heart beat sound and find that can relax me a little. Take very slow deep breaths feeling your stomach (not chest) puff out on your in breath and sink in on the out. Also I have some sleeping tablets for times like this, as long as I don't keep taking them my GP is happy to prescribe.
So yes, I know how you feel and I can tell you that's exactly what AF is like.
I'm sure everyone here can understand how you feel. There are alot of us, so you are not alone. Our subconscious is a very powerful thing and can dominate our thoughts at times. I know when I am having a strong episode at night that I can't sleep even if I wanted to. I force myself to leave the bedroom and turn on the TV or stroll through the endless videos on YouTube to remove at least a portion of the anxiety that comes with the AF. You can't possibly silence your brain completely during an attack, so strive to find something that will alleviate some of the panic. That will definitely help. Remember you have a entire family here on this site that truly understands how you feel and what you are going through. Stay strong and I hope you have an episode free day.
Hello. I'm relatively new to paroxysmal AF so I can relate to your post. I'm on Flecainide too and like you have used an extra dose on Dr advice when I got fed up with a 14 hour episode. I'm glad, well not glad but you know what I mean - that someone else hears their pulse in their ear. I thought it was just me. To answer your question - no, I don't think you're being over sensitive. I would be asking my GP to arrange a telephone appointment with my cardiologist to note you've had your first episode for a while. I recently had a phone appointment with my cardiologist and he suggested that I might increase my dose of Flecenaide to stop the episodes. I've elected not to do so at the moment as dose increase of this drug should be carefully monitored. Hope this is some help?
Thanks Singwell, omg I can't imagine a 14 hour episode, you poor thing. My cardiologist discharged me 18 months ago but I think I will ask my GP to refer me again if this happens again in the near future.
Others have episodes for up to three days so maybe not so bad! But mine are quite aggressive I think. Cardiologist seemed to take note anyway. I concur with what others have said here re anxiety. I've had to fight that one and this group really helped. Plus I set up a buddy system with two girlfriends - if I'm having an episode I message them on and off throughout the episode (though not in the night) and it helps. I also found out that it's perfectly possible to have a phone chat with a friend in AF and I noticed I felt better afterwards. Be kind to yourself - this is a difficult time for all of us, let alone the AF.
Hi Jen. I can totally get what you're saying. All I know is that once you zone in on the feelings you get, it's very hard to zone out and not then become hyper aware of the physical sensations. Anxiety sets in, then fear, then sometimes panic and I assume cortisol floods the system and then we are in free fall where every ectopic feels like a bomb dropping.
Getting off this loop is so vital and anxiety makes us stuck on the treadmill. Finding ways to reduce anxiety and distract oneself are key, at least for me. I'm not always very good at this , I just know that my anxiety, once awoken, is my biggest enemy as it makes even minor flutterings greatly exaggerated.
I recently listened to a Dr Sanjay Gupta podcast about this topic and I found his reassurance very calming. Check out his YouTube channel perhaps?
Fear isn't real, it feels real but it's not. Often it's our brain playing tricks on us and remembering that helps calm me....and I do like the idea of listening to the slow heartbeat sound.
Hi Helen, thanks so much for taking the time to reply. I know you’re right about fear, think I let it take over. I’ve definitely had a calmer 24 hours, did some baking to distract myself yesterday afternoon & realised I’d been concentrating so wasn’t as fixated on my heart rate!
I agree about Sanjay Gupta, I find his explanations very clear & he does make you feel better just listening to him!
It was extremely worrying for me after being diagnosed back in 2006 at 46. I had put on my son's heart rate monitor ( he was a county swimmer and they had to wear monitors for training )while playing football with him in the garden never having a day of work for 30 years I found myself in A and E diagnosed with permanent aflutter. I thought it was the end of the world I was off work for 6 months ( until the my first successful cardioversion). I spent most of the time worrying and reading all the bumph on the net which didn't help to begin with ( the doctors then told you very little).Eventually cured by an ablation in 2008 but an ablation for the following proxy AF in 2010 was not as successful . Nowadays the AF lasts up to 8 hours at a rate up to 170( the problem with the AF compared to the flutter is that it varies like a roller coaster ride whereas the flutter was constant) about once a week or so which I treat like a headache and just carry on and lead a normal life, no problems, touch wood! To be honest it made me realise even more how good life is and make the most of every moment .
Hi Maril1, thanks for your reply. The longest any of my episodes have lasted is 5 hours so I’m realising I’m one of the “lucky” ones after reading that yours & others last much longer. It’s just horrible isn’t it? I love the idea of treating it like a headache though & will try & take that approach the next time.
Hi Jen, oversensitivity passes after time - take up a completely new hobby that you always wished you had done. You don't mention if you identified the trigger for your most recent episode. Consider reducing sugar & gluten, also more lifestyle changes and asking your cardiologist to increase your Flecainide to 100mgs x2 per day if you get more episodes. Good luck!
I know exactly what you are going through you are not alone, i have a good couple of months and i say to myself "right i think i'm getting on top of it" than bang like you get woken up with heart all over the place, i try do deep breathing stay calm and wait for it to settle, take my Beta Blocker etc than all that day i'm checking my pulse constant i'm just not satisfied until i have my heart back to the way it is its just dreadful trying to stay relaxed
Yes it’s not easy, but it seems relaxation & staying calm seems to be the key. I’m trying to keep distracted by doing other things, been baking so the waistline might expand!
I was also like you where I could hear every heartbeat especially as you are trying to go to sleep which stops you going to sleep and tires you out. Which makes you more jittery.
I am now 28 months Post ablation and I have mostly got away from that. If I try I can still hear my heart it but mostly don't. I.e. I have relearned to ignore it.
I do not think I have had afib since my ablation but i do get runs of ectopics Some time small sometimes long. Still In one that I woke up with yesterday morning. I can go months without any( or I don't notice them may be if they are not too bad) . But as I have now had all this for 28 months with no apparent ill effects I am at ease. If this run gets worse ie more frequent ectopics and I still have it next week I will be more concerned and start getting" more sensitive " as you put it. In short if I get something that I have had before and it did not cause a problem before I ignore it. My view is that the more you worry about your heart the more heart issues you generate . Not medically trained but I think it "fight or flight" response and is useful when dealing with a wolf but you can't run away or fight your own heart!
Your jittery description sounds like you are dwelling on the first reoccurence for 18 months. The fact it is it only one occurrence.
So try to relax, get good sleep until you get something you know is unusual or symptoms you did not have before. If you do then you need to need to speak to your hear doctor.
Thanks for your reply, I can relate to a lot of what you say. I will try & focus on the fact that it was one episode & indeed might not reoccur for another 18 months. Fingers crossed!
I get the same jittery physical feeling that makes it difficult to relax yourself. I know stressing over this bad for everything and yet it is a real challenge to stay calm. I totally understand and feel your distress.
I have just started Flecainide and Eliquis and I am a nervous wreck. I was having episodes, about once a month or more and my EP couldn’t catch them to be sure it was AFib even tho I described it to him, heart rate 170, heart quivering, pulse all over the place, lasted about 3 hours each time, went to ER once and it converted about the time I arrived, so he ask me to buy a Kardia Mobile, which I did and we caught it and he started medication. I am actually afraid to do anything for fear it will come back. I am 82 and he indicated that an ablation at my age has risk. I hope I learn to live with this awful disease soon. Right now, it’s controlling my life. Can’t sleep as my legs hurt really bad, need to move them constantly. Only hurt at night. I understand how you feel. I do find that a anxiety pill helps when I am having a episode as the longer it goes on the more anxious I get. I feel weak for several days after it is over, as well. Good luck to us all!
I encourage you to read a nice thread that I started when I had my third episode. Like you I became very anxious and I felt that AF was ruining my life, that I couldn't work and I knew it was tough on my husband. The thread is on ways to distract yourself during an episode. The responses I got during that day (14 hour episode that only stopped because I took a double dose on my GPs advice) really helped change my attitude. And I've regained my confidence and hope in life. Talk to your GP. Ask if you can call the surgery if you are having an episode. That's what I did the last time. I let my GP know I was having an episode, we discussed heart rate, things to look out for etc and I made a good stab at riding it out. I got tired after 14 hours and my heart rate was rising so I called again and he recommended an extra dose of my meds. There's no need to go through this alone. The unfortunate thing is that you get a diagnosis and a packet of pills and you're left high and dry to live with a condition that distressing and psychologically challenging. Loads of people in this forum have found ways of coping - they adapt - on its own AF as I understand it is not life threatening. Hope that helps.
Your story sounds very much like mine. I didn't have any episodes after being diagnosed … I thought, "he must have made a mistake … I'm fine" … so when I went for the visit to my cardio … I said "doc, I think that I am okay … I won't have another event" … my doc said "just wait, you WILL … so I waited!!! Then one day out of the clear blue sky, early in the morning, maybe around 4:00 am, (I was alone) -- my husband was in Europe … IT HAPPENED AGAIN. I couldn't believe it. I drove myself to the emergency hospital and after four hours, it stopped … they put me on an iv … and it just stopped … when I saw my cardio in the hospital, he said "see, I told you that it would return" … and well, it has visited me a few times since then. The last time, I had a cardioversion. That was approximately five months ago. It hasn't returned and I seem to have that mind set again … it won't come back ever again!
Relax knowing that you have an incurable condition that will come and go. Just hope that it doesn't come during this stupid plague. That's what I pray. I don't want it to return during this epidemic … deep breathing, happy thoughts, exercise … DIET … watch very carefully what you are feeding your body … so important … stay very busy … plan your meals carefully … eliminate alcohol … I have one glass of wine on Saturday evenings only … I used to have a cocktail daily … no more …
Best wishes for infrequent events … but try to do everything you can to prevent events … try to remain positive and start projects (artwork), making your environment pretty … stay busy and your mind can't focus on anything negative ...
No, you are not being too sensitive. I fully understand what you are going through.
When I was first diagnosed, and for many years afterward, I was a nervous wreck. Back in the 1980's and 90's every episode for me meant a trip to the hospital. With a young family it was something we couldn't really afford. Even though I had health insurance through my employer, I had to pay 20% of the cost out of pocket.
I drove my wife and kids nuts with my worrying. I refused to drive in the middle or left lane of a freeway for fear I would have an attack and not be able to change lanes to get off the highway at the next exit. I was afraid to get in an elevator for fear that it would break down and I would be stuck in there for hours. I just knew I would go into A Fib and not be able to get medical attention.
I refused to take plane trips or vacations for fear that my fear of flying would trigger an episode in the air. Same for long car trips because I feared that the stress of being in traffic would set me off. I feared driving over long bridges with no exits, including the Chesapeake Bay Bridge, Bridge over the Atchafalaya Swamp in Louisiana. I feared driving through tunnels, like the Baltimore Tunnel and the one at Mobile Bay. We would always have to switch drivers when we knew any of those things were coming up. I was required by my job to take business trips and had to pay out of pocket to have my wife accompany me to keep me calm on flights and to drive the rental car at the destination. Thankfully, my inlaws were willing to travel 1000 miles every time to keep our kids. If my wife had not been willing to leave the kids and come with me, I would have lost a great job, which I ended up holding for 41 years.
It was only after having Flecainide as my PIP, and seeing that it worked quickly every time I went into A Fib, that I was able to relax and get on with life. My life, and that of my family, was heavily impacted by my A Fib from my original diagnosis in 1986 until probably 2006. Sadly, by then both of our sons were grown and our oldest had a child of his own.
There was nothing anyone could say or do to calm my fears. Heck, my cardiologist even took to writing prescriptions for Valium for years because he knew my anxiety was making the A Fib worse. My wife and his wife were friends and my wife confided in his wife about the impact it was having on our family, as I tried to brush it off at each doctor visit so he didn't think I was nuts. I had every medical test in the book run, even EP testing, and no reason has ever been found. Nothing was ever found to be abnormal.
Now, with so much time between episodes, and knowing I have my Flecainide with me I can finally relax and enjoy life. And then this darn virus had to come and ruin our retirement, which could have been the best time of our lives, since we have money in the bank, a steady income and I am once again mentally fit to travel.
One question to all, do all of you take some form of blood thinner? I know there are 4 or 5 different kinds. My EP said strokes are the thing to really be concerned about so he put me on a blood thinner as well as the rhythm medication.
It depends on your CHADVAS-2 risk factor. Check that out online. You can do it yourself. If you're female sadly you get an extra point. If you have AF, high BP and are female the risk factor for stroke increases - hence the anticoagulants.
No you are not being over sensitive. Iwas exactly the same way when I was diagnosed 15 years ago. After many trips to ED fearing the worst I now just take extra flecinaide do deep breathing exercises & it seems to work for me.I usually follow up with GP appointment just for reassurance. You will be fine. Try to relax more & enjoy life.😉☺
I feel you, I've been diagnosed with AFIB 2 years ago and since I used to check my pulse few times per month. This forum and this beautiful community keep going to help me to be calmer. Also I suggest you to do breathing exercise everyday, trust me if you practice every day you'll feel results.
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Flecainide and zantac
I jinxed myself 3 months after ablation with EP Doc yesterday!
Ablation recovery time & Flec
Blood pressure monitor 
I am new to the forum and have found it very helpful, I have had PAF for 5years although never had really fast heart beat not over 100 just 
