Hi Kelly the same thing happened to me on Saturday morning as I was getting ready to attend a birthday party for my twin grandchildren. Sadly I had to miss the party even though my son offered to pick me up, he seems unable to grasp that I am too breathless to talk and feel too ill to bother with anything anyway.

The episode lasted 8 hours which is really short for me, 12- 15 is the norm.

I did the things I had to do like staggering down the lane on shaky legs with the dog then I made myself comfortable on the sofa and settled down to do my slow breathing exercises while listening to radio 4 as a distraction.

During episodes I prepare a meal, some soup from the freezer (it is important to stay dehydrated) take the dog when I have too and just calmly wait for the episode to end knowing that getting anxious will make things worse. I have a Kardia so am able to keep track of my heart rate.

The only reason I would have to go to hospital would be if I was experiencing chest pain or the episode had lasted so long I required cardioversion and I have decided 24 hours is my limit if my heart rate is high . As I am already anticoagulated, on a suggestion by Dr Gupta in one of his videos when an episode reaches 18 hours I will not eat or drink anything for 6 hours in readinesss for a general anaesthetic should it become necessary.

Until recently I was getting a couple of episodes a month but hadn't had one since December. I feel in control of my P-AF, I am the master and it holds no fear for me now it is just an annoying and uncomfortable inconvenience.

Having a plan of action really seems to help and if you live alone as I do I think it is a wise thing to do

I only have the PAF and was only diagnosed in September 2017 so who am I to offer advice but have you tried meditation or mindfullness or breathing techniques? They don't involve any extra drugs and you are in control and drink lots of water!

I feel your pain. Its so scary. Have u considered an ablation to try and stop the Afib? I find deep breathing and focusing on your breathing helps during an episode. There are lots of good meditation apps for your phone yo help to learn how to meditate on your breath. Focusing on that can help u get thru episodes. Headspace or 10% Happier are two good meditation apps. Best of luck and hope u find dome peace.

I can definitely empathize with how scary and awful it feels when the heart races like that!! I had that more frequently 5 years ago, when I was first diagnosed, though I've had instances of it jumping up to 127 a couple of times more recently.

I'll share what's helped me in case anything might be helpful for you.

If I'm at home, I lie down, become as still as possible, and breathe deeply. I do everything I can to physically calm myself.

Afterwards, I check to see if there's anything particularly stressful about the situation that might have triggered the spike. For instance, when I started teaching one of my college classes in January, I was dismayed to find myself in a dark, cave-like classroom that felt claustrophobic, with no tall teacher chair for me to sit in to avoid being on my feet for 3 hrs straight. My heart leapt up to 127 & stayed there for an entire class. Ugh.

I decided to ask my wonderful supervisor if there was any chance the class could be moved and she was able to do that. Huge difference and much appreciated!

Another time I had a particularly strong episode the morning I was supposed to go to a dental appt with the dentist I was no longer too comfortable with. I didn't go and ended up switching to a dentist with a better fit, who is fabulous. So I always try to see if I can find a particular trigger.

I've shared elsewhere at the forum about my research into taking micronutrients to nourish and strengthen my heart. I've been taking CoQ10, Magnesium, Potassium, and Taurine for 2 months now and it is making a huge difference. My heart feels stronger and my mood has definitely improved!

I used to freak out with each episode, especially with a high heart rate, but the experience is vastly different now. I have had episodes, but they are nowhere near as powerful or overwhelming as they used to be. I do not have as intense a dive emotionally; I'm convinced that it's because of changes I've made in my life and the physical nourishment my cells have been getting from the micronutrients. There is literally gas in the engines of those heart cells!

I've done a lot of mental work around the experience as well; telling myself that the episode will not last forever, reminding myself. Honestly, I don't even know how I've done that, but somehow I've been able to find some strength to do that out of necessity. I guess it's like being a firm, but loving parent. I reach out and talk to someone in the midst of an episode if I'm feeling anxious; if often will help my heart calm down. And, of course, I take my dose of Flecainide to stop the episode. I only take as Pill-in-Pocket.

Hope that might be helpful. Best wishes to you!

Hi Kelly, I suddenly realised I didn't know what meds you are on, so read some of your back posts and as far as I can tell you are on Flecainide only. If that is correct somebody has been naughty because you should not be taking Flecainide alone, even though a small dose, because it can cause other arrhythmias such as flutter. This happened to me after many years of taking Propafenone which is in the same class. As a result I was admitted to hospital with a suspected heart attack and once things settled down had Diltiazem added to my meds (it would have been Bisoprolol if I wasn't asthmatic). Are you not taking either of those, have I missed something? They would also help with the panic attacks arising from your symptoms. I didn't think my Diltiazem was very effective until I was able to walk to my A&E bed with a HR of 168 which ought to have floored me!

I am sorry you are having such a bad time, your symptoms sound rather like PTSD which would fit with your history. You have hit the wall after many years of suffering. Hang in there, hopefully your EP appointment will be helpful X

Hi,

I read your post a few hours ago, and decided to wait to see what others have suggested before I sent a reply .I have had Afib for many years and now I am in Pesistant/permanent Afib.

I can really relate to what you are going through here, its just so scary, in fact I got so scared, and (back in the day) had so little help ,I actually sold my house and moved close to a hospital,....."just in case". I can recall many a night spent sitting in A&E until things calmed down,

Yes I can laugh about it now, but at the time I was just in a massive mindset, totally consumed by anxiety, and totally convinced that I was not going to make it though the night.

The best my Dr could do was to give me doses of tranquillisers, which did help somewhat but they were not the answer in the long term.

In my opinion the first thing we must do is to accept the cards we have been dealt. Easily said for sure, and it takes time, but nothing will improve until you can learn to live with this "beast" Accept it wont kill you tonight, and just get by day to day.

Once you have accepted this, then I agree with other posters, meditation, and more importantly breathing exercises work a real treat, in fact I'm now at the stage of "slowing things down" within a few minutes, even if my heartbeat goes so fast I cant even count them!!!!!

So yes, train your body to accept, understand it will take time, then decide if you wish to take any treatment other than anticoagulants, train yourself to breath slowly and deeply, concentrate on your meditation "word" (mines SHEHAM) sit back and just say..."give me your best shot you bloody $%#%$^^!!! and learn to enjoy the rest of your days on this planet...if nothing else at least hubby will be less stressed LOL!!!!

I have had 15 years of AF, first ablation failed second lasted 8 years the third 8 weeks ago successfully apart from drinking or eating anything cold then puts me into AF. I know how you feel! Now I do the vulvar steps which is blow into your nose like you would trying to blow the air out of your ears like on a plane. Keep blowing for 15 seconds or till you can’t take any more then your heart slowly comes back into rytham as you are shocking it and at the moment that’s working for me so maybe try! Also I find a quick couple mile walk takes my mind off it and slowly slip into normal beats. Steve

Hope you feel better soon I have it as well since sept 2018 and was very scared but like every one says try and do meditation it make you feel calm and breathing it helps me and it's nice to read other people's text make a you feel no on your own

Hi Kellyjelly,

I had a partial av node ablation and it worked for two days,Since then I feel like its hit and miss again

I started waking up in a second,bolt upright and gasping for breath,

I had a cardio monitor for 24 hrs and 72 hrs but guess what,Nothing!!!

Within about 2 days of the monitor coming off,I was back in af.

Now those of us with paf know if you go to hospital and your heart rate is dangerously high,we get given heart attack protocol drugs and within minutes bang,you're back in NSR of as close as,

And honestly Kelly,that's the best relief I've ever got,its a combination of two or three drugs but the way it kicks you back into rhythm,I dont think its constantly prescribable but have a word with your Doc.

Hope you find some relief

Matt

Hi kellyjelly I have to admit I've felt exactly the same as you everytime I've had an episode. But my partner calls an ambulance and they arrive on blue lights each time I'm taken in to resus and given drugs to calm it all down. And each time the doctor has told me it was exactly the right thing to do and that I should never hesitate to call an Ambo or wait too long I do have a dilated Aorta and I'm frightened it'll put it under to much stress. Its happened 6 times and they all lasted around 8 hours and I felt so Ill afterwards for days. I am really not surprised that we get anxious about it it is horrible if you are like us and get such awful symptoms with it. Xx

i so understand your anxiety and fears with a flutter.maybe four or five years ago i had both a.flutter and a fib at the same time .after a lot of protocol .meaning i was sent first to bath royal united hospital and under a heart doctor who seemed content to keep giving me cardioversions when my heart would flip out again.when my next follow-up came around.again he said ah we will do another cardioversion . and i said no you are wasting money .i need to see a consultant in the bristol heart infirmary .anyway i got an appointment to see a mr duncan and he got me in on a cancellation .as you can imagine i had two lots to contend with.and he knew i needed it sorted soon.it was bliss when they got rid of a flutter they tried to do the a fib at the same time but couldnt so i went back in and dad a fib done again .i still need a bit of tweaking as i flip out sometimes but goes back to normal and its not a big problem at the moment .are you waiting to see a heart consultant?.please get it sorted dont be palmed off with your doctor keep pushing good luck xxx

I’m so sorry you are feeling like this I know how scary and stressful it is. I had horrible bouts of this before my last ablation and was unable to function- it’s miserable. I’m so happy you are seeing an EP and hope this is your ticket to feeling better soon. I don’t know where you are but if at all possible or affordable I’d suggest getting an ablation at a center with loads of experience with complicated cases- i would be shocked if a top EP surgeon couldn’t fix this. It’s worth the inconvenience of traveling and spending extra money to get your life back and likely be able to work again. I’m as good as new afib free now and it was so worth it . In the meantime you have great suggestions here- deep breathing, some anxiety meds for the bad sessions. The EP is likely to offer you rate control or a general change in meds too so chin up as there are things that will help you quickly. I’d also suggest a clean diet and weight loss if needed, and cutting out alcohol and caffeine 100% if you haven’t already. These all end up being critical for us afibbers, even with a successful ablation as you want to do all you can to make it last. Hugs to you during this stressful time- best wishes to feeling much better soon.

Hi KelIyjelly

I have SVT. I am not on any treatment because I have asthma and I have to manage exhaustion so the consultant was not keen on beta blockers. I am scared about having an ablation so am still considering this option. My heart goes out to you having to deal with arrhythmias as they are vile both mentally and physically.

I have developed a coping plan – I have not had much advice about what to do so this has come from trial and error. There was a while before I got a formal diagnosis, but it seemed like SVT so I used SVT strategies . I have been using these strategies for almost one year. My episodes originally lasted an hour or more but since using this plan I have been able to convert more quickly.

1 I tell people what could happen and what I will need to do.

2 I carry a Kardia and do a quick heart rate check. Usually it is about 230 and truly horrible

3 I try the following – sit instantly. I broke an ankle passing out so I really do not want that to happen again. I take big gulps of iced water. I carry a bottle of water with ice in it. If it is available, I also try rubbing ice on neck, pulse points, neck, eye lids. I suck ice if it is available. I do modified valsalva 2 or 3 times. I try coughing , bearing down without full valvsalva, blowing in a tube, hanging off sofa or chair so my head is as low as possible. I try carotid artery or pulse point massage. I also try right sided foetal curl. I have dunked my head in a bowl of water with ice in it. I have not tried squatting yet.

4 If I feel the lurch I get when I am coming out of an episode, I recheck the Kardia and if rate is 110 or lower I start anti panic attack breathing ( very slow, controlled with long out breath) as I am probably flooded by adrenaline at this point. I try to get rate under 100 then I try and do nothing but relaxation for about 15 mins. Mainly this is more slow breathing – I try muscle relaxation but if the shaking is bad I do not pursue it. Sometimes I can resume what I was doing; sometimes I am really wiped out and have to sleep it off

5 The mental part is really hard. I hate this condition and the unpredictability. I carry a written plan of what to do as I may forget all my options plus an information card to show to other people. I know adrenaline is my enemy so I try to remain calm and focused. This is not easy as I feel very ill and I shake. I have a mantra which is “I can do this – I have coped before, I will cope this time.” I repeat this over and over if I feel my mind is drifting to panic mode. I always check the time of onset as I have been told to call an ambulance after 20 mins or if I feel very breathless or faint so that is plan B. I try not to let this horrible condition mess with my mind more than necessary but this is not easy. Sometimes I worry about whether I can cope with larger shops or whether it could strike when I am at work. If I saw someone who was ill I would try and help them so I try and remind myself that most people are kind. I think people do better if they understand what to do. I do not want people instantly getting an ambulance. A couple of times I have shown people the Kardia and explained that if I can get the rate under a hundred I am getting control back. Twice people have managed to get a load of ice for me which was wonderful.

6 In terms of prevention, I drink decaffeinated drinks. I tried magnesium tablets which possibly helped a bit with ectopics. I have Epsom salt baths. I am careful about bending forward or rushing up and down stairs or rushing things generally as these are triggers.

my very best wishes to you

Frankiehf

Hi,

Before my ablation, my heart rates when in PAF were similar to yours - 150-240. At those rates, we feel like we’re having a fight or flight reaction, which translates to extreme anxiety. I felt helpless not being able to voluntarily stop it so tried to distract myself during episodes — listening to meditations, playing computer games, reading, TV, sometimes even going to sleep and hoping I’d wake up ok. However, my episodes never lasted more than a few hours. Your longer episodes are probably much more debilitating on your nervous system. I think you have to give yourself credit for going through a very tough, scary time and for reaching out for support and new approaches. The solution for me turned out to be ablation. Best of luck to you during this unsettled time. Keep us posted!

Read all the posts and completely agree with learning how to de-stress, breathing, mindfulness etc. I also find listening to a normal heart whilst I do the deep breaths/ relaxation helpful and calming. Travis Van Sloten does an AF blog and mentioned it. It's called entrainment.

One of the posts said we shouldn't be on just Flec. I am. I'll check when I see cardiologist/EP as my ablation is in 4 weeks

Keep practicising and look out for a mediative yoga class of you can.

Amanda

How do I cope? I get the problem FIXED ASAP! I immediately schedule an ablation to stop it.

NOBODY should have to go a significant amount of time suffering, whilst there is an easy cure available.

Hi Kelly you don’t mention anything about your Electrophysiologist. I hope you have one as he or she will probably have some thoughts on how to get your rate back into sync. I’ve had 2 conversions because like you I would go into a tail spin heart rate high sick to stomach and anxiety that I felt like taking a dive off the roof. I now have a pacemaker which keeps my rate at a steady 65 and is helping me greatly as I just had my knee replaced and feel like if I didn’t have this under control I would be a real mess. Good luck 🍀👍

Kelly do live in the US ? If so I have a wonderful team of doctors at 3 different medical centers in NY and NJ. I will send you info that might speed up your recovery process, why the h—- are they waiting when you are so miserable sounds like a very uncaring group of educated individuals

Oh man, you poor kid. My doctor told me not to worry when it happens because you're not going to die from A-fib. For me now, it's just a big inconvenience. I always carry Flacanide with me when I travel and take 200 mgs., (doc said 300 mgs. but I found that 200 works well for me) rest or lie down for a few hours (sometimes 4 hrs. before I go into sinus). Then all is good again and I exercise the next day as if nothing happened.

It is scary at times, especially if it doesn't correct in a day and a half. Then, after trying to correct it naturally without flacanide I take the pills and all's well in 3 to 4 hours. I don't reccommend this but I do reccommend you ask doctor about flacanide.

Good luck.

Great sympathy with you , hopefully you will conquer the fear and get out !

I wish I had more to add regarding suggestions but it looks like many have provided helpful tips. I just want to send my heartfelt empathy toward what you, KJ, are going through. I wish you peace and tranquility, and hope this issue subsides soon.

Hi Kelly. Hopefully things have calmed since you posted but I know exactly how you feel. My background - I had a heart attack Dec 3rd 2018 due to a blockage in artery on front of heart and since then I have been diagnosed with AFib.

I’ve had “fluttering” for a few years so infrequent that I didn’t worry about it - it was always “flip-flop-gone.” Since my heart attack, it’s all of the time now - several times a day.

Around May I woke up one day and didn’t feel quite right. It did not feel like a heart attack so I kind of went about my day. About two hours went by and it got worse. I was home alone and didn’t want to call 911 - I know it was freaking stupid but I figured it was just because I slept bad the night before and I was a bit tired. I went back to bed and 3 hours later or so it subsided.

In April I was at cardiac rehab and the nurses sent me to the ER because I came in and was in full blown Afib. By the time so got to the hospital my heart was flipping and flopping so bad I thought I was going to die. At the ER they did and EKG and then rushed me off to get X-rays and Catscans and it was a repeat of the night I had my heart attack but this time no one is telling me anything because they didn’t want me getting worked up, but it just made things worse. After getting pumped with fluids everything subsided and I was sent home to bed rest. It scared the crap out me. It’s been coming on a lot more frequent - even though I stopped all caffeine; which is what they said was the main cause.

Doctors have been, I feel, blowing me off and making it sound like “it’s okay” because I’ve had a ton of tests and all tests showed my heart is fine (had two catheterizations - 1 a stent was installed, the other was to check the plumbing and everything “looked fine.”

My cardiologist finally put me on a heart monitor last week for a week and a half to see what’s going on.

The main thing that I have found that helps control the Afib is steering clear of coffee and soda, lots of water, regularly taking my meds....

When it comes on, I just go into my head and breathe - in nose, out mouth and just keep repeating. Trying my best not to focus on it because doing so just makes it worse. But bottom line is that the Afib is scaring the crap out of me because it is making me nervous each time that “this is the big one...”. But doing everything in my power to relax and breathe.

One bucket list item is to start looking into meditation techniques. I have to start making time for me. We all do!

Sorry for the ramble but I wish the best that things have and are getting better!

I had a cardioversion about nine months ago an since then things have been reasonably OK. Whenever I get a bout of AFib, I eat lots of pumpkin seeds and drink a full glass of very cold water after which I burb. I read this on an Afib website and the cardio nurses felt that it worked because the oesophagus is close to the heart. Really worth your giving it a try. Good Luck.