How do you cope ?: This morning I was sitting... - AF Association

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How do you cope ?

Kellyjelly
Kellyjelly
82 Replies

This morning I was sitting in bed and my heart rate shot up to 150 and I felt extremely unwell, faint and dizzy short of breath,pressure in chest. It was a mixture of regular and irregular.

After years of having afib and svt you would think I would have found a way to cope and stay calm but since I had atrial flutter in December for the first time and felt like I was dying the wheels have come off.

I get completely terrified, I sob hysterically and and just feel so afraid,convinced something really bad is going to happen.I called my poor husband who came straight home and stayed with me until it settled down. The whole thing lasted about an hour and a half and now I’m still in bed feeling quite down and too scared to do all the things I wanted to do today in case it happens again. I’ve been like this since my last hospital admission in December, I haven’t been to work and never go out on my own. Up until the atrial flutter episode I coped relatively well with my heart problems, I am a very busy sociable person normally.

My question is how, when your heart is beating that way, can you find a calm place in your mind and a way to stay present? I literally lose it and afterwards I’m left feeling so pathetic and weak. I want to cope better but just don’t know how.

82 Replies
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doodle68

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 :-)

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Kellyjelly
Kellyjelly
in reply to doodle68

Thank you for sharing that with me. I have never been able to truly feel relaxed when I have an episode but with the afib and svt I had gotten to a uneasy acceptance. Since December when I had very symptomatic atrial flutter for the first time my heart just hasn’t gone back to how it was before. It’s still paroxysmal but more frequent and more mixed rhythms and lots more random runs of fast heartrate when resting which I find really frightening.

I hope that I can find a way to get to the same mindset as you. It’s impacting my life so much, when I have an episode I find even going to the loo very difficult due to the dizziness and the increase in rate from any movement.

I do know that I could do more though when it’s not happening and it’s fear that is stopping me.

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Buffafly
Buffafly
in reply to doodle68

Hi, I'm interested to know if you usually have a cardioversion? When I had my recent long episode nobody mentioned cardioversion, they just said they had lots of things to try to get me back into NSR. In the event my heart reverted before they tried the second thing! I had the impression cardioversion was a last resort or only used in emergency. People's experiences of treatment seem to differ widely.

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doodle68
doodle68
in reply to Buffafly

Hi Buff :-) I have never been to hospital for any form of treatment during an episode of P-AF so I don't 'usually have 'anything other than my own coping strategy. I do not like people around me or fuss when I feel ill and as I said the only reason I would go to hospital would be if I was experiencing chest pain or if an episode with a high heart rate had gone on so long it would require some form of cardioversion either chemical or mechanical to try to correct it as mentioned in Dr Guptas Videos see the links in my post here...

healthunlocked.com/afassoci...

I can think of no other reason to go to my poor performing local hospital during an episode where I might spend 15 hours on a trolly getting increasingly stressed.

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Kellyjelly
Kellyjelly
in reply to Buffafly

No, I’ve never had cardioversion. It has been mentioned a few times in the past but they always try extra flecainide first and that usually works. I’ve had another drug once in a&e that stops the heart and that was terrible and didn’t work. I mostly take an extra tablet and wait it out, my episodes can last from a few hours to 24 hours. They are usually a combination of svt and afib and now atrial flutter too 😩 my rates are usually 180 to 240.

Treatment options are definitely so varied and have changed so much over the years. In the past they used to automatically give a blood thinner on arrival in a&e and a beta blocker, my last visit in December they didn’t do anything other than watch and wait. I ended up in resus when heart went to 240 and I was suffering chest pain and they asked me what I thought we should do next! I suggested another dose of flecainide with warm water and that’s what we did, 2 hours later I was back in NSR. I only ended up in hospital because I passed out at work and felt so poorly and very different from how I usually feel, now I know it was my first experience of atrial flutter.

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SandiBee

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!

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Kellyjelly
Kellyjelly
in reply to SandiBee

If you have experienced this awful condition even once then you are definitely qualified to offer advice. 😊 when it’s not happening and I’m in NSR I have a nice plan that I will not be intimidated by it ever again and I will practice my breathing and stay calm however the second it starts I can’t, I just feel complete terror that I can’t seem to get a grip of.

It’s really upsetting because like I say I have had this for so long and been managing but since December I’m just all over the place.

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Rbyy

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.

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Kellyjelly
Kellyjelly
in reply to Rbyy

Thank you so much for the helpful post. I have my first appointment with an EP on Friday so I think that might be one of the treatment options he may offer. I am going to download those apps today and try to practice a little bit everyday.

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Hoski
Hoski
in reply to Kellyjelly

Ive only dealt with the paf over 3 yr, last event 11 mo ago. First several episodes I thought I was dying. I learned controlled breathing and meditation, which helped alot. I also am on sertraline( zoloft) which is an antidepressant and helps with anxiety. You might ask about a prescription to take something as needed for anxiety as it almost sounds like you might be having an anxiety attack triggered by the arrhythmias. The more anxious you get, that feeds the arrhythmia, kind of a self perpetuating situation.

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Kellyjelly
Kellyjelly
in reply to Hoski

Thank you for replying. I think you are right, since December I’ve found it all very overwhelming. I’m going to learn how to do the breathing and meditation, I’ve just downloaded an app and can see how helpful it could be. If I can’t get a grip of my response after a bit of practice I think I might have to mention it to my doctor

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Rbyy
Rbyy
in reply to Kellyjelly

Best of luck.

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Kellyjelly
Kellyjelly
in reply to Rbyy

Thank you 😊

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Kellyjelly
Kellyjelly
in reply to Rbyy

I have just done my first 3 minute meditation with the app you recommended! I feel better than I have all day and can see how much of a help it could be,I’m going to really practice with it. Really big thank you 😊

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Rbyy
Rbyy
in reply to Kellyjelly

Thats awesome! Meditation take practice so if you can stick with it. It can gelp with many things do hope it helps.

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Kellyjelly
Kellyjelly
in reply to Rbyy

Me too 🙏, I think it all comes down to finding ways to stay in control. I will be practicing everyday, I’m so desperate to feel better able to cope.

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Auriculaire

Do you take magnesium? This can have a calming effect not only on the heart but also on anxiety.

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Kellyjelly

I have tried a few different types over the years but I get really really bad night sweats, even if I use Epsom salts or spray magnesium.

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Hidden
Hidden

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!

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Kellyjelly
Kellyjelly
in reply to Hidden

It really was so helpful, thank you so much. I feel like I’m wandering around lost and really scared but from posting here today I might be able to find my way. I will try the tips that everyone is suggesting and hopefully each day I will become less scared.

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Hidden
Hidden
in reply to Kellyjelly

You can do it! Really, what helped me most was deciding at some point to take charge of the situation. AF can be unpredictable and crazy-making, but it’s helped a lot to simply take action and change my mindset.

If I’d been passive & only waited for the docs to tell me what to do, I’d be sunk.

I have financial pressure to deal with, so this has motivated me to do all I can, including setting new boundaries with people. AF has definitely strengthened my backbone!😂

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Kellyjelly
Kellyjelly
in reply to Hidden

I’m so grateful for all your help. It’s the unpredictable nature and how symptomatic I feel when it happens that seems to completely overwhelm me. I need to really focus and practice meditation and breathing, it will hopefully help me find I way out of the fear reaction!!

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Heart1234Wisconsin

I’m a fortunate one who has only experienced active paroxysmal afib for less than a year, before I had an ablation. My episodes began a couple of weeks after a heart attack. As you and others have said, this condition can be absolutely terrifying. The first time for me shook me to the core. After a few trips to Emergency, and a couple of visits to my cardiologist, I began to understand that the real danger was a stroke. So I continued my ani coagulant, made a deal with the doc that unless I fainted, had chest pains, a heartbeat above 140-150, or an episode didn’t last more than 8-10 hours, I would ride it out. My episodes primarily started in the middle of the night, pulling me out of sleep. There was always that initial anxiety waking in the dark with a racing heartbeat, but it became tolerable. Finally, because of increased frequency of episodes, I had an ablation, which after a couple of hiccups, has held for 10 months. I still get a missed beat once in awhile, some of which I believe may be because I have been sensitized to every little twitch.

We all understand the fear, anxiety and general difficulty with this condition.

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Kellyjelly

Thank you for your reply. It must have been really good to make the plan with your doctor really early on so that you had a very definite idea of when and if you should get help. I’m so glad that your ablation is offering you some relief, long may it last.

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Buffafly

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

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Kellyjelly
Kellyjelly
in reply to Buffafly

Your post has really moved me, thank you so much for your kind words.

I was prescribed bisoprolol in December after my first atrial flutter however it made me so poorly that I stopped taking it after 3 weeks. I could barely stand up and had really bad palpitations and lightheaded ness. I’m hoping when I meet the EP on Friday that he will help me to sort all this mess out. I have been on flecainide for 12 years and never had a beta blocker alongside. I feel really reluctant to try another incase it makes me feel as bad as bisoprolol.

I do feel that after years of trying to manage alone I have finally caved in. The addition of atrial flutter seems to have tipped me over the edge especially as my heart just hasn’t settled down since that episode in December. I hope I feel clearer after Friday, I’m really struggling.

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concup

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!!!!

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Kellyjelly
Kellyjelly
in reply to concup

Thank you so much for your kind words. I think one of the problems is that for so many years I was made to feel it was all in my mind, I felt ashamed to talk about it and I think it probably means that even though I’ve had it most of my adult life I haven’t been able to accept it.

Since December I’ve had to admit that I’ve been struggling with it more and more over the last few years and with the introduction of atrial flutter into the mix and a definite worsening of daily symptoms I just feel like it’s finally sinking in that I need more than a never ending supply of flecainide and no follow up on how I’m doing!

I’ve been on flecainide for 12 years and seen a cardiologist no more than 5 times during this time. I must take some blame for this as I definitely adopted the ostrich approach.

That isn’t an option anymore, my daily life is so impacted with the unpredictability of the episodes severity of the symptoms that I really need help.

I think finding this forum to hear other people’s experiences and write down how I feel is really helping me to see that I will be able to find a better way of coping now that I’m on my way to accepting this is real and it’s not my fault.

To read how you have gone from selling your house because you were so scared to where you are now really does show that it is completely possible to feel better. For years I have fought to hide it believing it was a weakness within my mind and if I fought really hard to be stronger then I could make it go away. It’s never going to go away, when I fully accept that I know I will have won at least half the battle.

Thank you again, everyone has been so helpful and given me so much to think about.

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Liverpool10

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

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Kellyjelly

Thank you for the tips, I will definitely try the nose blowing. Unfortunately I can barely stand up when in afib so walking wouldn’t be an option.

I hope so much that the third ablation offers you many years of freedom from this horrible condition

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MydogBrandy

Hi, I can only refer to svt. Have you tried downing about 4/5 glasses of ice cold water. I used to find that helpful. I used to have to lie flat too. The other thing to try is to sit up, blow into a syringe for 15 seconds hard then drop your head back on the pillow whilst your partner raises your legs into the air. This surprisingly is a manoeuvre that does work on occasions. Good luck, I ended up having an ablation in a January ad I used to get so upset in the end even though I had had it for 18 years, but enough was enough when I started getting them twice a week even though I was on a cocktail of drugs. I felt it was controlling my life. Lots of love, Ursula x

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Kellyjelly

Thank you so much, I haven’t tried any of your really helpful tips. When I was younger I used to run fast up the stairs and then immediately lie flat and that worked for a few years but not anymore. I feel like I have so many more things to try!

I hope you feel loads better and your ablation was successful. 😊

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MydogBrandy

Hi, feel so so better had no episodes since my ablation, still do not drink coffee or tea though, not even decaf as I don’t want to tempt fate.

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Kellyjelly

That’s such good news!Long may it last 😊

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MydogBrandy

Hope you join me and get there too soon 🤗👍

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Kellyjelly

Me too 🙏🙏🙏

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Redbull45

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

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Kellyjelly

It really does help to read other people’s experiences doesn’t it. Thank you for your reply. I’m really going to focus on the meditation and breathing

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Spearof66

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

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Kellyjelly

Thank you for your reply. I’m sorry that after an ablation you are still struggling with this horrible condition, can they try again with another ablation?

I have been in hospital a few times with very high heart rate but never had the drug combination you describe, I wonder what it is? I will have to ask my doctor.

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Spearof66

Hi Kelly,

It's only because my left hand side wouldn't burn and scar during the ablation.

I started on bisoprolol 1.5mg and it did help but not enough,it was basically like putting a band aid on a compound fracture lol

But I'm on 3.75mgs per day now and most days I don't have heavy duty af,just a few flutters but I also suffer with stress and anxiety disorder and copd.

Its well worth asking your doctor,tbh I never asked,I was too happy to be back in normal sinus rhythm.

I was just told it was a drug protocol for my heart complaint.

But honestly I was back in nsr in seconds after the injection,

And I was in a seriously bad way,sweat was pouring off me and incredible chest pain.

I have the upmost sympathies for anyone suffering from this condition.

I can get probably another 2 ablation but that's it usually in the UK,3 attempts but I've known af and paf sufferers in the USA get 5 and 6 ablation but you have to remember that the ablation is being done on your hearts own pacemaker and 5 or 6 times can't do it a lot of good,

Theres only so much burning or freezing it can take and the more times it's done,the greater the risk.

I had,I hope I'm spelling this right lol

A perocardial infarction basically fluid between the the heart wall and perocardial sack surrounding the heart,which is quite dangerous and I had to stay in a while longer,So I really don't know if I'd go for another ablation,Only if my condition worsened.

Do you have your af down on paper at the hospital,an ecg that recorded your af?

Because until mine was actually recorded by a paramedic and the doctor saw it,They wouldn't treat it as af even though it was plain to see I needed beta blockers desperately to lower my heart rate,

But hey,I'm no doctor,I suppose it could have been anything

Kind regards

Matt

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Spearof66
Spearof66
in reply to Spearof66

Sorry Kelly

Just read your page

You're a Veteran at this like me.lol

Take care.

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Spearof66
Spearof66
in reply to Spearof66

Spoke to soon

My af is back and now I have copd,

Its thrown a spanner in the works.

Gutted!!!

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Hidden
Hidden

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

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Tut7iFru7i

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

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Dinodog

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.

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Frankiehf

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

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Kellyjelly

What a wonderful detailed and extremely helpful post, not just for me but for anyone looking for ways to cope. Your descriptions of your coping strategies are so vivid that I was crying by the end. It is so reassuring to have responses from people that completely understand exactly what it feels like and have figured out ways to keep control.

I can’t thank you enough and I am going to try all of your suggestions. I’m am going to show my family too because I think it would give them more insight into the battle that happens within our bodies when we face these episodes.

Take care 😊

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jgolay

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!

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Kellyjelly
Kellyjelly
in reply to jgolay

Thank you so much for your reply. One of the best things I feel I have done is openly post my fears and worries here. I can’t actually believe how much helpful advice and support I’ve been given every time I post a question. It is nice to know I have a place where I can ask questions that only other sufferers would be able to understand and answer.

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AIW58

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

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Kellyjelly
Kellyjelly
in reply to AIW58

Thank you so much for your really helpful tips. I will google entrainment as I’ve never heard of it. I sometimes feel like my flecainide is making my heart go weird rather than helping it. It’s such a shame as I have used it for 12 years and it has been really good.

Is it your first ablation in 4 weeks?

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AIW58
AIW58
in reply to Kellyjelly

Yes my first. Compared with your history I've had it easy. Although I do understand the emotions generated by AF and I imagine flutter is worse as it can be faster.

I really hope your EP is helpful. I would suggest having some key questions to ask. Also ask if you could be copied into the letter they send your GP. Take your husband too as a second pair of ears. Also ask if there is an arrythmia nurse whom you can talk to. It's important that the EP understands the impact this is having on your life.

Take care.

Amanda

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Kellyjelly
Kellyjelly
in reply to AIW58

Thank you so much for such helpful and really practical advice. I will be doing all the things you suggested 😊

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Aufgeblassen

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.

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Kellyjelly

Unfortunately even getting a diagnosis has been quite a long journey for me. I have suffered with this from the age of 17, I’m now 46 and only just being referred to an EP. As I understand it there is no cure available, I thought that ablation was just a treatment option to improve symptoms? I am meeting the EP on Friday for the first time so hopefully he will be able to explain to me how I can get a better quality of life than I have now.

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Aufgeblassen

Actually, ablation is a cure of AF (stops it completely, returns your heart rate to normal), even though sometimes it takes two times for the cure to be permanent. My 2nd ablation was about 17 months after the 1st one, and the good doctor said I had only a 20% of it ever returning again.

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Kellyjelly

From what I have read on this forum there are many people that ablation has not been a cure for. I would say a 20% chance of it recurring doesn’t constitute a cure?

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Aufgeblassen

I guess it depends on how you look at it. If it is 100% gone, I consider it a cure. The point is, you can live a normal life until "if" it returns, then you give up one day (for a 2nd one), and then you are back to normal again, will only a small chance of it returning. I'd settle for 20% vs. 100% (doing nothing) any day.

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kjjkkk
kjjkkk
in reply to Aufgeblassen

I agree Auf - meds did not help, cardio versions did not last. Ablation essentially has "fixed" me (knock on wood) and it has made all the difference in the world. Basically one year worth of worrying, racing heart, sleepless nights and a lot of meds is now 100% in the rear view mirror. Average resting heart rate now back to around 70 (had one period last year, prior to ablation where I was at 174 sitting on the couch), and normal exercise, a lot of sleep, health diet and minimal alcohol has made it all worth it. I wish you luck

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Kellyjelly
Kellyjelly
in reply to kjjkkk

Let’s hope I’m looking at the same 🙏

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Kellyjelly

Me too, just to clarify I’m not “doing nothing” but just desperately trying to find a way to feel better. I’m very new to this forum and have read time and again that it’s prudent to remember that ablation is not a cure. I suppose it depends on what your EP finds when he goes in and his skilled he is.

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kjjkkk
kjjkkk
in reply to Kellyjelly

and by the way - happy to chat off line with you if you like. A little morale support goes a long way

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Kellyjelly
Kellyjelly
in reply to kjjkkk

Thank you so much 😊

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kjjkkk
kjjkkk
in reply to Kellyjelly

doubted that I would every be "normal" again - what a relief - hang in there

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Kellyjelly
Kellyjelly
in reply to kjjkkk

I hope so much that I will writing the same supportive replies on this forum in the future 🙏

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Aufgeblassen

Sorry, I didn't mean doing nothing, I meant not doing what is practically a miracle fix.

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Kellyjelly

That’s ok, I’m so glad you have had that miracle fix and hope more than anything that after I speak with the EP I will feel more confident. I suppose it’s just very hard for me to believe that after nearly 30 years of suffering it could all just have been fixed just like that.

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Aufgeblassen

Well I hope you don't have to settle for a long waiting list under your socialized medicine. My 1st ablation, I had to wait 5 weeks, but next one was less than 2.

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Kellyjelly

To be honest I’ve waited this long I don’t mind as long as I know I have a plan and some hope of feeling better 😊 I’m very grateful it is available even if it is over stretched

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Maagaa

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 🍀👍

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Kellyjelly
Kellyjelly
in reply to Maagaa

Thank you for your advice. I meet my EP for the first time on Friday. I’m really hoping that after a long road I’m finally going to be able to make some kind of treatment plan for the future. Glad you are feeling better and long may it last. 😊

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Maagaa

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

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Kellyjelly
Kellyjelly
in reply to Maagaa

Thank you so much for your offer of help. I live in the uk and have found the road to diagnosis incredibly difficult. I think initially my age got in the way, I was 17 the first time I went to the doctors and it took a long time to convince someone that it wasn’t anxiety. I was in my mid thirties before it was captured on an ecg and diagnosed. I started at 17 with PSVT and ended up with AFib by mid thirties and more recently atrial flutter too. Finally I am being listened to and sent to the right specialist so hopefully I will be feeling better soon 🙏

Thank you again, I really appreciate your offer

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Daver112

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.

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Kellyjelly
Kellyjelly
in reply to Daver112

Thank you for your advice. I have been medicated with flecainide for 12 years now. It has been really good but I suspect that my recent experience with atrial flutter might be down to the flecainide 😪

If things get really out of hand I do take an extra dose and it still helps but I’m having so many symptoms I feel I need to change treatment, hopefully my meeting with the new doctor will give me some options

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Luludean

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

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Kellyjelly
Kellyjelly
in reply to Luludean

Thank you 😊

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mbheart

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.

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Kellyjelly
Kellyjelly
in reply to mbheart

What a lovely reply to wake up to, thank you so much. I’m so glad I posted this question, I’ve got so many really practical and helpful tips to try and more than that I feel reassured by other people’s stories that I will be able to cope better one day

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NitramE

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!

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angeliks

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.

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