26 Years Old With AF (Very Symptomatic) Can... - AF Association

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26 Years Old With AF (Very Symptomatic) Can anyone relate or help please. (Im desperate) x

Danlovell
Danlovell

Hi everyone sorry for the long story. I am 26 years old and was diagnosed with Paroxysmal Atrial Fibrillation 3 Years ago. What happened was I woke up from sleeping with what I can only describe as what felt like a heart attack/pressure/unbearable discomfort. ( Not just like an irregular heartbeat that some people mention when in afib. Literally unbearable. Rang an ambulance and was taken to a resuscitation unit where they were going to cardiovert me where I spontaneously cardioverted on my own after an hour and a half of being in this unbearable discomfort. Since then I have been on 5mg Bisoprolol once daily and 100mg Flecainide twice daily for my AF AND PVC's have been pretty much kept at bay for that amount of time apart from 3 or 4 AF episodes which have only lasted a matter of a minute or so. (again unbearable pressure/tightness) so a minute really is enough. I just need someone to speak to as I've gone from someone who used to wake up each day enjoying life to someone that feels that there's no point anymore as there is no cure to this 'disease' that is going to progressively get worse for me. If I didnt have the crushing/tightness (like im repeatedly being kicked in the chest symptoms) while in AF that I have, the AF wouldn't bother me in the slightest. I just feel like if it gets worse I wont want to be here because even a minute is enough of feeling the awful feeling that I do. Also I havent read in the last few years anyone who feels the same symptoms, more that they are just aware they are in AF or feel fatigued etc. I am just really upset and its bringing everyone else down with me as they dont understand how it feels. Thanks to anyone who replies in advance. It really will mean a lot :( x

40 Replies

Okay, okay, do not put yourself in such a tight box that all alternatives are unbearable. You have Afib. It sucks. But I have a Afib, have had it since I was nineteen, off and on, and nothing could be done until I was in my 50's. Most Afib can be controlled. Most Afib can be either cardioverted or ablated. The most important thing that you can do right now and for the foreseeable future is to read this board, educate yourself on Afib, keep asking questions, and do not, DO NOT give in to that small voice in you that says, it's all hopeless. That small voice is the uneducated one. Give yourself time and patience and tons of kindness. You're going to be okay. Now start looking at the foods that may trigger this condition: like, alcohol, sugar, and perfumes. You have to change your diet. Try walking to rid yourself of the anxiety. Don't run or overdo the exercise. And take care of yourself. There are plenty of people on this board who have gone through what you are now experiencing. They will wants to help and give you support.

Thank you so much for your kind words and advice. Are you symptomatic aswell or do you just get the irregular heartbeat.

Danlovell
Danlovell in reply to Danlovell

I never had fruit and veg until I was diagnosed which Ive started eating daily. And am also doing 10mins daily excersise running and cutting alcohol down to once a week, to give myself the best chance

If you never ate fruit or veg before your afib started you might have been low in magnesium. Many people here have found that taking a magnesium supplement helps. Dr Gupta who posts very helpful videos here recommends magnesium taurate. You mention cutting alcohol to once a week. That should not mean that you can then have several drinks . Alcohol often triggers attacks. Eating too much as well. This forum is very helpful as there are many people who have struggled with afib for years , who are still here to tell the tale and most importantly living fulfilled lives. Their advice can give hope and confidence.

Thank you very much x

In the beginning, I was asymptomatic but then it progressed to irregular heartbeat and finally to Permanent Afib. That took years and a lot of worry because I every time I saw the doc, he could not find anything. Finally the EKG machine confirmed it. Regardless of the outcome, you have to take care of yourself in ways that you I thought were automatic. I also found that I hold my breath alot, which contributes tremendously to strange beats etc.

It is totally understandable to feel the way you do. Even AF without having the symptoms you describe is extremely stressful how ever many years you have it.

I find the only thing to do is lay down and use the slow breathing techniques to calm down.

If you can master the stress and tell yourself it is not going to kill you then you may find you can cope more easily.

I think it would be a good idea to talk to your EP regarding the crushing chest symptoms because they are not typically of AF and there may be something else going on.

Until you can talk to someone, use meditation (there are good meditation videos on YouTube) to help calm the stress.

Pete

Danlovell
Danlovell in reply to pottypete1

Hi, ive had an MRI of my heart and the crushing/tightness they are not worried about :/ I think it is definitely AF because I get the same tightness with skipped beats but for a lesser amount of time.. Thanks for replying

pottypete1
pottypete1 in reply to Danlovell

That’s good that you have had an MRI scan and that they did not find anything.

You now need to try and learn to destress an relax as much as you can.

Pete

I will add, that if it was to continue like this for years to come then I would be ok as the flecainide and bisoprolol are only letting it happen once every month or so, but im just afraid that, that wont be the case.

Buffafly
Buffafly in reply to Danlovell

It is true that AF can progress, but if it does to the point where your QOL is badly affected (for you to judge) there are a few alternative medications or the option of ablation. Ablation is not always a 'quick fix' or completely successful the first time but a good EP will do his best to achieve a good outcome in the end and techniques are improving all the time.

However, I cannot stress enough how important lifestyle is. To sum up what you are aiming for is 'a healthy mind in a healthy body'. You do not need to go overboard (unless you enjoy that sort of thing) on restrictive diets etc but learning a calming breathing technique is very helpful.

Best wishes.

Hi Dan

I completely understand where you are coming from, the Afib seems to control everything and you cannot focus on anything else.

Please make sure you see a specialist, to check that there are no underlying causes, in my case, nothing could be found. Apnea tests, hormones, deficiencies, heart scans, EKG, - all of them, and nothing was found. My issue is related to poor health, diet and lifestyle as a whole.

I have been investigating Afib, Ectopic beats etc. for the last 2 years, since having being diagnosed with Afib. I went for a cardioversion and this fixed it right away. After spending a lot of time losing weight, eating well and getting "back on track", I have sadly regressed and am paying the price now. The holidays were not good diet-wise and I have not exercised at all.

Do I have myself to blame, most definitely. But what I have found is something that worked for me and it is time to get back to that space and not fall off the wagon again.

These are things that have helped me tremendously. I believe my issues are related to my digestive system and any heartburn, GERD, gas and bloating definitely caused these issues.

Lose weight

Get active

Gluten, in all forms - it causes inflammation and irritation

Dairy products

Keep hydrated

I take Magnesium 2x a day 300mg

Keep yourself busy (stress relief, takes your mind off of it, relaxation)

Not eating a heavy meal before bedtime, in fact, not past 8pm. If I am not hungry, I skip dinner

Whole foods, remove processed foods, junk, sugar, salt, etc.

If you have endured trauma of any kind, perhaps chatting to a psychologist will help.

Keep the faith, there are many people in the same boat and understand how tough this can be.

It is a tough condition to get a handle on, so I have addressed it from the physical, mental, spiritual and emotional angles.

Good luck and all the best.

Justin

Syn3rgy
Syn3rgy in reply to Syn3rgy

perhaps have a look here as well, very helpful site.

myafibheart.com/

Danlovell
Danlovell in reply to Syn3rgy

Thanks Synergy

Hi Dan, this answer is short because I have to do something else, sorry. I don't normally notice I am in AF from my heartbeat, what I get is a few thumps and bumps and a feeling of discomfort/anxiety and if my heart revs up a bit I get a tight feeling in my upper chest or a feeling as if I've got an egg stuck at the base of my throat. It is horrible and scary but as I have had my cardiovascular system checked out several times and it is pretty good the conclusion is that I have artery spasms brought on by the irregularity/speed. An unfit 75 year old is not supposed to have a HR of 150! The feeling is horrible but anxiety makes it worse. I sympathize very deeply as I had 24 hours of it over the weekend 😰

I'm sure someone will be along soon with loads of advice about your situation but I wanted you to know you are not alone 💜

Danlovell
Danlovell in reply to Buffafly

Hi Buffafly, you have explained what happens to me to a tee. I get a thump pr two which I presume is the skipped beats or artery spasms that cause the AF to happen. Is there anyway that that xan be fixed or do I have to just wait for it too progressivevely get worse. :/ Thanks again

Buffafly
Buffafly in reply to Danlovell

Hello, see my reply above. Neither ectopics nor artery spasms cause AF. Many conditions can make it more likely or worse but basically some people develop twitchy heart electrics. Some things we can doing something about eg high BP, some we can't eg leaky mitral valve. Most health websites have a list of factors and we've added a few of our own 🤔

Buffafly
Buffafly in reply to Buffafly

PS I think the thumps are from an occasional beat that's much stronger than others. If I record a rhythm strip I can see that I have a mix of weak and strong beats.

Danlovell
Danlovell in reply to Buffafly

Do you think I could have coronary heart spasm as well as AF? as I only get it for less than a minute every few months, I always thought it was my AF but because I feel that tight ess/pressure now Im worried I have that and I cant see a specialist until March

Danlovell
Danlovell in reply to Danlovell

I have had a coronary angiogram before and an echo but nothing showed up

Buffafly
Buffafly in reply to Danlovell

Since you've had the right tests you don't need to worry. It's not a separate thing for you, just part of the deal 🙄

Danlovell
Danlovell in reply to Buffafly

Thank you for your replies Buffafly :)

Sorry to hear about your plight, but it is highly fixable, so don't fret! I've heard of a professional hockey player at a mere 20 years old who went into AF. He was facing either retiring from playing, or getting it fixed with a relatively simple & quick ablation procedure with almost no recovery time. He did the latter, and went back to playing again in short order.

doodle68
doodle68 in reply to JakeBell

''Jake Bell '' you post has been reported, I will say no more

Hi 👋

So sorry your feeling this way and I completely understand.

I’m 39 and have had irregular heartbeat and sudden (what I’ve told is) svt attacks for years.

Recently I’ve been feeling really odd and almost feel my heart is about to stop along with feelings of despair , I went to a&e in September and had a monitor for a week.

I’ve heard nothing back and not had a diagnosis of any kind.

So I get how your feeling...it definitely affects your day to day life.

Some others on here will prob have a lot more info as also at a loss currently but want you to know your not alone.

Have you been referred / waiting anymore tests?

Hi Good Morning

Sorry to hear your bad experience.

I’ve gone from palpitations 20years ago

to PAF in March 18.

Fortunately I have not had any pain just AF

which causes minimum problems really.

Pulse was sky High but now our Hospital seems to have situation under control.

In fact going today 2pm.

They have me on 7.5 Bisoprolol and 7,5 of

Ramipril one in Morning and I take the

Ramipril at Night.

No problem but the drugs do make you

Tired.

Also had new knee in November 5 2018

Go to Gym Every Day for one Hour

Cycling mostly for the knee need to get

Back to Golf then Tennis in May.

I will be 80 years Old in March but that’s no

Problem just means I’m more experienced

than Most and age doesn’t stop much.

I drove with my Wife Jane 2000 miles

For Xmas break December and New Year.

I believe your best way forward at 26 years

which is a Great Age to be is to take it on the Chin.

Try Not to think about it or dwell

Get up in the Morning take good Air.

And exercise as much as you can.

They Key to life is Fitness do as much Cardio as you can I’m sure you will feel

Better for it and take note on eating.

Don’t know what you like to Eat ?

But would say lots of foods are bad.

Like NO Burgers.

Going to Gym now so good bye and good

Luck John

lockerbie
lockerbie in reply to Seventy9

John,

I loved your post! Good advice for all of us. May you have continued quality of life and your positive attitude. Your an inspiration.

Sue

Give yourself an MOT:

Physical checks:

Are you inside your BMI - weight /height ratio 25 or less, 23 ideally.

Is your waist half your height? in inches?

Blood pressure?

Sugar levels?

Cholesterol levels?

Lipids/ triglycerides?

Lifestyle

Recreational drugs?

Alcohol?

Junk/ fast food?

Lots of coffee?

lots of lovely fried food?

Plenty of cakes?

At least half an hours brisk walking every day?

got an activity tracker?

Diet 80% green stuff, 20% non fatty protein?

Danlovell
Danlovell in reply to Ianc2

Thank you, I probably am guilty of 3 or 4 things on that list, so will look into changing that!

Hi I agree with what Syn3rgy said. My AF is due to my reflux disease/hiatus hernia (although I haven't come across a cardiologist who will acknowledge that). I've had the symptoms you describe and yes, it is scary and debilitating. I have to be very careful about what I eat and no big meals, otherwise I suffer. I'm still learning what I can/can't eat, for example, on Sunday evening I had some pasta in tomato sauce and got short bouts of AF for about 36 hours afterwards, so no more of that for me. I do eat burgers but low fat home made ones, or vegetarian ones. It takes time to adjust to a new 'normal', and I too have felt the anxiety that you experience but it will get better. I've learned that I must keep active, eat well and sensibly, avoid alcohol and caffeine and I also find that the support from this group is great. It helps to know you are not alone.

Oh you poor thing.......I think we all here have felt your despair st some point in our path along with this......and you are so young..........I agree with all the others say.......and perhaps it might be a good idea to tell your doctor how you are feeling as it’s not fair you are sharing this burden of feelings alone.

My heart felt like it was thudding out of my body whrn I was in AF , it sure felt like it dominated my whole being......nowhere to hide from it or stop hearing it.

The feeling of no hope are understandable.....for a start the social life seems to suddenky not feel the same.....before you go out have a drink.....if you want another drink you don’t think twice,,,,,then suddenly with this thing you are told alcohol could make things worse, and also you feel vulnerable in every aspect of life in case this thing starts up..........

It’s the fact the thing is variable and a bit like a cloud hovering but not sure if it will rain or not........ but trust me in the great horizon of your life ahead of you this is a blip. See the cardio......ask about ablation. If you have an ablation your confidence will grow.

Everyone above talks about replacing breathing...it’s true.....try and see it as a thing that will pass......I lay down and waited did nothing.............I think knowing so many of us have it and it’s not a killer, that makes it less of a beast.....you aren’t alone. Outsiders don’t really understand, how could they...cos you look well and haven’t a bandage round your head eh!

ive gone from thinking my life was over.....feeling like a beached whale...worried.....not wanting to go sit in a restaurant or my local bar with chums........to recently getting a long haul flight and a road trip along Australia east coast......I had my ablation and thrn I never thought about it hardly.......I think that’s the thing....getting it out of your mind......I took my pulse constantly...I rarely do now.......so it’s getting the confidence back in your body.......all the advice from the others is good........chin up! Trust me, this is solvable.......but I’d go see doc...even have a good cry........we are all here to help too.

Sunny smiles,

Sue

Danlovell
Danlovell in reply to Morzine

Sue that has literally made my day, thank you so much xx

Morzine
Morzine in reply to Danlovell

Im still on Flecainade and bisoprolol after my ablation.....I do trust those two to really stop these attacks so have confidence in them as a lot of us use them. You’re so young, I don’t know what circumstances money wise you’re in but maybe it would help to go pay one off privately an EP and ask about ablation . It would give you a more positive feeling if you were actively on a waiting list. I do feel for you as I was you two years ago......chin up,

Sue

Want to thank you all so much. It really does help to know that Im not alone and it really is lovely of you all to take the tine out to reassure and comfort me as best you can. I really appreciate it so again.. Thank you x

Buffafly
Buffafly in reply to Danlovell

Best wishes, keep in touch 💜

Jfjfern
Jfjfern in reply to Danlovell

I have had PAF since I was 37 it’s taken me a long time to come to terms with it . I’m 46 now. The biggest thing for me was not been able to drink alcohol and constantly worrying about when it may happen again. I used to be really jealous of people who didn’t have the condition but it gets easier and just takes time. I am a lot more confident now and have learnt to live with it I’m controlled on medication. I have two young children the second one been born after I had had PAF for three years . I don’t miss alcohol now either. All I can say is it gets easier with time to come to terms and live with it rather than it ruling you. I felt like I was the youngest one with this condition but the good thing with this side is everyone is really supportive and you realise your not alone.

Hidden
Hidden

Dan - don't know if this will help you or not, but it won't hurt to give it a try. Keep a close eye on what you eat - if it's not sugar or salt it may be something else. Here is a cut-and-paste of data I have accumulated over the years:

-----------------------------------

After 9 years of trying different foods and logging EVERYTHING I ate, I found sugar (and to a lesser degree, salt – i.e. dehydration) was triggering my Afib. Doctors don't want to hear this - there is no money in telling patients to eat less sugar. Each person has a different sugar threshold - and it changes as you get older, so you need to count every gram of sugar you eat every day (including natural sugars in fruits, etc.). My tolerance level was 190 grams of sugar per day 8 years ago, 85 grams a year and a half ago, and 60 grams today, so AFIB episodes are more frequent and last longer (this is why all doctors agree that afib gets worse as you get older). If you keep your intake of sugar below your threshold level your AFIB will not happen again (easier said than done of course). It's not the food - it's the sugar (or salt - see below) IN the food that's causing your problems. Try it and you will see - should only take you 1 or 2 months of trial-and-error to find your threshold level. And for the record - ALL sugars are treated the same (honey, refined, agave, natural sugars in fruits, etc.). I successfully triggered AFIB by eating a bunch of plums and peaches one day just to test it out. In addition, I have noticed that moderate (afternoon) exercise (7-mile bike ride or 5-mile hike in the park) often puts my Afib heart back in to normal rhythm a couple hours later. Don’t know why – perhaps you burn off the excess sugars in your blood/muscles or sweat out excess salt?? I also found that strenuous exercise does no good – perhaps you make yourself dehydrated??

I'm pretty sure that Afib is caused by a gland(s) - like the Pancreas, Thyroid (sends signals to the heart to increase speed or strength of beat), Adrenal Gland (sends signals to increase heart rate), Sympathetic Nerve (increases heart rate) or Vagus Nerve (decreases heart rate), Hypothalamus Gland or others - or an organ that, in our old age, is not working well anymore and excess sugar or dehydration is causing them to send mixed signals to the heart - for example telling the heart to beat fast and slow at the same time - which causes it to skip beats, etc. I can't prove that (and neither can my doctors), but I have a very strong suspicion that that is the root cause of our Afib problems. I am working on this with a Nutritionist and hope to get some definitive proof in a few months.

Also, in addition to sugar, if you are dehydrated - this will trigger AFIB as well. It seems (but I have no proof of this) that a little uptick of salt in your blood is being treated the same as an uptick of sugar - both cause AFIB episodes. (I’m not a doctor – it may be the sugar in your muscles/organs and not in your blood, don’t know). In any case you have to keep hydrated, and not eat too much salt. The root problem is that our bodies are not processing sugar/salt properly and no doctor knows why, but the AFIB seems to be a symptom of this and not the primary problem, but medicine is not advanced enough to know the core reason that causes AFIB at this time. You can have a healthy heart and still have Afib – something inside us is triggering it when we eat too much sugar or get (even a little) dehydrated. Find out the core reason for this and you will be a millionaire and make the cover of Time Magazine! Good luck! - Rick Hyer

PS – there is a study backing up this data you can view at:

https//cardiab.biomedcentral.com/a...

Danlovell
Danlovell in reply to Hidden

Thank you very much. I will try all the things you've suggested!

Hi Danlovell. Sorry to hear this is happening to you. I think you should get a good, experienced EP and talk about your ablation options. I wouldn’t mess around with waiting too long either. You’re too young to have to put up with these horrible symptoms. I had a cryo balloon ablation 3 1/2 years ago and I’d do it again if I ever need to. I wish I hadn’t waited 20 years to do it. I wish you the best.😊

I can only say try to relax.......the stress of a fib can cause pressure.You are so young and have they said why you have a fib?

I find meditation helps

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