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So scared at 26. Any help or reassurance would be really appreciated

Danlovell profile image
48 Replies

Hi everyone. Im 26 and have had paroxysmal afib for 3 years an episode every couple of months not lasting very long and normally resolves with an extra flecainide and bisoprolol. Is there anyone on here who has been in a similar position, be it now, or since you were younger that can maybe give me some reassurance. I am constantly scared of dying at such a young age because of how awful the episodes feel when I get them, and am worried that they are just going to become more frequent and they are already ruining my life. Thanks in advance to anyone that replies. Will mean a lot to me.

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Danlovell
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48 Replies
PhyllisK profile image
PhyllisK

Daniel you will get very valuable support and information from people with much more knowledge than I have. I am sad that you are scared and so young but you really can manage this problem with the super support of the volunteers and the rest of the very knowledgeable people on this forum. I send you a cyber hug in the meanwhile. X

Danlovell profile image
Danlovell in reply to PhyllisK

Thank you very much. Means a lot x

PhyllisK profile image
PhyllisK in reply to Danlovell

So sorry if I have made a mistake re: your name but the sentiments are the same. Very, very Best Wishes. Phyl. xx

Frances123 profile image
Frances123

I’m sorry you feel so scared but can understand it. Look up Sanjay Gupta a consultant cardiologist on YouTube. He has done some marvellous videos on Afib which I am sure you will find very helpful.

Afib is scary when it first happens but the more you learn about it the better you will feel and hopefully find answers to put your mind at rest.

@BobD on here is a mind of information on Afib and i’m sure he will be along soon and can tell you more, much better than I can.

Hugs

Frances xxx

Danlovell profile image
Danlovell in reply to Frances123

Thank you very much France's xxx

madametobacco49 profile image
madametobacco49 in reply to Frances123

Sanja has taught me a lot--definitely worth your time--MmeT

Some helpful advice already Danlovell and I’m sure there will be lots more. First things first, you are not alone because there are many young folk around who have had experiences similar to yours. Many are involved with what we generally refer to as extreme sports where they push their body to its limits and very often AF is the price they sometimes have to pay for their passion. Differently, there are also abuse their bodies with drug and/or alcohol and other bad lifestyle choices and, in the middle somewhere are youngsters who may have inherited health problems or have just been unlucky. Where you sit in all this is irrelevant, all we are keen to do is to get you on the right treatment path.

Regardless of age, virtually everyone who is diagnosed with AF is scared witless mainly due to fear of the unknown and because the heart is crucial to life, the fear of premature death is nearly always top of the fear list.

Although we on the forum are not medically trained, it is generally accepted that provided AF is controlled, there is no evidence of anyone dying prematurely because of AF. By controlled, we mean on medication to help control the heart rate which is what Bisoprolol does and if necessary, other drugs to help control heart rhythm such as Flecainide. Because you are already taking these medications your AF is being controlled so hopefully your fears of an early death will soon subside. Because I’m anxious you see this as soon as possible, I am posting this now but more information will follow.....

Danlovell profile image
Danlovell in reply to

Thank you very much for your reply. It really is appreciated x

in reply to Danlovell

errrr……..have I just been kissed by a fella?

jillybeanposh profile image
jillybeanposh in reply to

Well here’s a kiss from an older lady, very nice older lady I think. Xxxxx

cycleman73 profile image
cycleman73 in reply to

First time for everything aye... or is it ?

in reply to cycleman73

Not really, my missus (wife) is a nice older lady and I kiss her all the time.....😉

cycleman73 profile image
cycleman73 in reply to

But is it the first time you've been kissed by a bloke ????!!!!

in reply to cycleman73

You betya......apart from my Dad!

cycleman73 profile image
cycleman73 in reply to

That's alright then. I would kiss my Dad but he's been long dead. The only two blokes

I would kiss or be kissed by are my two 6ft 6 ins sons... possibly !!! Ha ha.

in reply to cycleman73

Well I’m glad that’s all sorted!....👍

cycleman73 profile image
cycleman73 in reply to

Too true !!!!!!!!

madametobacco49 profile image
madametobacco49 in reply to

lol

pusillanimous profile image
pusillanimous in reply to

Yes , my son is a competitive canoeist and developed A fib at a young age, he had an ablation 12 years ago, and has never had another attack, he sees his cardiologist annually who has always told him to carry on as normal - his cardio is also a canoeist. My cardio told me, that second to older people, his largest group of patients are canoeists and triathletes!

Mike-tyson profile image
Mike-tyson in reply to

I was told af a lot less of a risk if you take an Anticoagulant like Warfarin to reduce the risk of blood clots and strokes. I have been on Warfarin for five years now without any problems. You just need a

Blood test every 4-5 weeks to check your INR is between 2&3. To achieve this I

Just take 2mg Warfarin every night. You can now get tablets that do the same job only you don’t need blood tests. NHS have been using Warfarin for over

50 years so have the antidote if you take to much. I

Know friends who have been on Warfarin for over 20 years without any problems. Also I like the idea of getting checked that all is ok every 4-5 weeks.

in reply to Mike-tyson

Agree totally Mike but the Danlovell is 26 yrs old so if he/she has a CHADs score of 0 then anticoagulants are not normally prescribed.

BobD profile image
BobDVolunteer

Sorry to read this Dan but do remember AF won't kill you, unless you are completely stupid and try to run a marathon whilst in AF! We have all been where you are now at various different ages and you are most defintely not alone.

My best advice right now is to go to AF Association website and read till you drop as knowledge is power and will help you to feel less worried. There are a lot of variables which need to be considered but at your age with your whole long life ahead it may be worth your while speaking to your doctor about seeing an electrophysiologist ( a cardiologist who specialises in rhythm problems) about a possible ablation. Whilst there is no guarantee of a cure this may well be your best chance of ridding yourself of the symptoms and worries although do understand that any and all treatment is only every about improving quality of life

Once again AF is seldom if ever fatal, even when it feels like it.

Danlovell profile image
Danlovell in reply to BobD

Thank you so much Bob. Really helpful :)

Frances123 profile image
Frances123 in reply to BobD

Mea Culpa, how on earth could I forget to mention our wonderful AFA for helpful information. Put it down to senility! X

dani777 profile image
dani777 in reply to BobD

Lovely words once again, Bob. "unless you are completely stupid and try to run a marathon." Let's hope she's not "completely stupid", right? She certainly doesn't sound stupid to me. No offence Danlovell, it's just that Bob's "style" can sometimes come off as a bit harsh or offensive. I am involved with MIND, a UK based mental health charity, so his "style" I find to be a bit off at times, however much knowledge he may have. But then, we're all different, aren't we.

BobD profile image
BobDVolunteer in reply to dani777

she?

Cavalierrubie profile image
Cavalierrubie in reply to BobD

Don't take a blind bit of notice. I think he is having a hissy fit!!! You are the STAR of this forum. Stay as sweet as you are

7164 profile image
7164 in reply to BobD

Bob

You are the star of this show

Don’t change and please don’t go away

Rod

You helped me a lot when I needed it

cycleman73 profile image
cycleman73 in reply to dani777

Well I beg to differ, Carry on Bob it suits me mate !

Part 2!

The other major risk is that AF increases the risk of stroke but before you get the eebeejeebies, this normally is only an issue for folk in their 60’s and beyond. So then we need to look at what are the best things you can do to minimise the effect AF can have on your life. Many will tell you that not only is AF NOT a death sentence, the vast majority go on to lead relatively normal lives.

One other often used term we use is “knowledge is power” and we always encourage new members to find out as much as they can about AF and the easiest and best way to do that is to read and digest all the information which is available on the AF Association by reading their webpages, link below:

heartrhythmalliance.org/afa...

Clearly you have had some professional medical advice to have acquired the medication you are currently taking. You need to be aware there are Cardiologists who specialise in arrhythmias such as AF and they are called Electrophysiologist’s (EP’s). We refer to them as the electrician’s because AF is caused by an electrical malfunction in the heart whereas Cardiologist’s deal with pipes ‘n valves so they are affectionally known as plumbers. So it’s far better to be referred to an EP as they are far better placed to develop with you, a treatment plan which take full account of your particular condition.

The final bit of good news is that younger folk who receive treatment fairly quickly are more likely to benefit from treatments such as an ablation. I am aware or a young lad who was an apprentice with a premier league football club. Around two years ago he was diagnosed with paroxysmal AF but was a ablated and subsequently became one of the team which won a junior World Cup!

Hopefully you will get a lot more help and information from other members but I was keen to make you aware that whilst there may be some challenges, the future will not be full of gloom and doom

Frances123 profile image
Frances123 in reply to

Lots of useful information Flapjack. X

Danlovell profile image
Danlovell in reply to

Thank you Flapjack.. Sorry about the kiss in an earlier post lol

TRheart13 profile image
TRheart13

I agree, it is scary! I’m 46 and have apparently had afib off and on since my late 20s (it was so infrequent that wearing a Holter monitor never caught it. The doctors assumed it was tachycardia & I was just “sensitive” or was just having panic attacks ). I remember being in the forest alone on a hot day after hiking feeling my heart beating erratically & thinking I was surely going to die out there! Sometimes there was accompanying chest pain & dizziness, which made me even more anxious that it was going to kill me. It took almost 20 yrs for me to get a diagnosis. I tried meds for a while with limited success, and decided to go for the ablation this past July after a particularly bad episode made me say “enough”. So far I’ve had no episodes. I still get nervous if my heart skips a beat, though. I did buy a Kardia monitor that works with my phone.(showing the readings to the doctor was what finally got me diagnosed with Afib and referred to a cardiologist) I used it when my heart was racing to track the episodes and to help me understand what my heart was doing.

mdub profile image
mdub

Hi Dan. It is terrible, I feel your pain buddy. The psychological effects can drive one crazy. As Frances mentioned Sanjay Gupta is an excellent resource, as is a-fib.com I highly recommend both. I mention the following only in concert with your doctor, I am not a medical professional but have suffered with afib for over 2 decades. Some tips- As every doctor will tell you, make sure you have a proper diet and exercise, lose a few pounds if you can. Eat as fresh as you can. Processed food contains lots of bad stuff, usually too much salt and too much salt causes you to lose potassium as it get flushed out when your body is getting rid of excess salt. Potassium is super important so make sure you are getting the RDA and maybe a little more depending on activity, climate and other factors that can make you lose electrolytes. (again check with your doctor). Potassium is part of the Essential Three if you suffer from Afib, along with Magnesium and Taurine. The aforementioned website can give you more info on that, but having optimal amounts may reduce your episodes. Make sure you have a sleep study. Even a case of mild sleep apnea can cause afib and heart beat irregularities. If I go without my CPAP machine for a few days ectopic beats start coming back. At your age I highly recommend an ablation. Find a place that does a large number every year as they seem to have a higher success rate. Resources are abundant, don't let afib rule your life, knowledge is power. Don't take "live with it" for an answer and go find your cure. Everyone is a little different, find out what works for you. God Bless.

Crystalpalace profile image
Crystalpalace

Danlovell I appreciate your concern. I'm a lot older and have had paroxysmal afib for the last 2.5 year. first few months were a nightmare. but now its under control and apart from the occasional blip I seem to be getting on ok. I did notice an improvement myself when I changed from bisoprolol to calcium channel blocker. I also take 50mg flecainide twice a day. it may be your suitable for an ablation if your still struggling. best of luck

dani777 profile image
dani777

Hi. I've suffered PACs and other palpitations since my twenties, although since last March they became far worse out of the blue, so since then, I've had several hospital appointments and a few visits to A & E, etc and I'm now on beta blockers - and the beta blockers have really helped with those ALL DAY LONG flutters, which are like torture. However, saying that, I had a huge upset yesterday, thanks to the effing DWP (department for work and pensions, who regularly mess with people), and it triggered me to have those bad flutters in spite of being on beta blockers - first time that's happened since I've been on them. And yes, it's very upsetting to have them, and more upsetting to have them when you're on betas given you feel you aren't supposed to have them anymore. But high stress - well, again thanks to the DWP, has caused me to have the episodes again so even high stress can't stop them when you're taking beta blockers. So it's so important to try to keep your stress down - although outside factors are hard to control. I am sorry I cannot reassure you much, because in my experience, when I was younger, I only had minor bouts of palpitations, and not often. But now, in my fifties, it's bad. And docs say that these often get very troublesome when you get older. Just try to remember that most palpitations, while they are horrible to have and feel, won't harm you. Try to think of them as just a "twitch" in a muscle rather than "oh my god my heart." Stay away from caffeine and alcohol, and again, try to keep stress down best you can. Those things do help.

jillybeanposh profile image
jillybeanposh

Good Morning to you, so sorry you have this at your age. We are told that it isn’t the AF that’s the problem it’s the company it keep. You are very young you are most likely a very fit person otherwise, yes? Read everything you can find about AF talk to your family and tell them how you feel. Message every morning on here, everyone will love to hear from you, we are like a second family and we all have AF. Don’t let it get you down see the specialists and nag them, have they mentioned ablation? You get on with your life and

Enjoy. Love

And

Hugs. Xx

Danlovell profile image
Danlovell in reply to jillybeanposh

Thank you Jillybean xxx

opal11uk profile image
opal11uk

Hello Dan, I too have P/AF and have had it now for over 20 years and I am still here! Because you are so young this is the perfect time to try and help yourself. Take a good hard look at your lifestyle and see if there are any changes that you can make which in turn will help this condition. In my experience, it is caused by several things but stress is a big factor and of course lifestyle choices that we make along the way. If there are changes you can make and maybe relaxation classes or interests you could get involved in then your life isn't centred around your condition and when is it going to happen again. A/F is frightening I know because you have no control over it but there are several techniques that you can apply that might help, slow deep breathing, listening to music, no not heavy rock but light music that takes you some place else, lots of different things that we A/Fibbers find help us. Staying away from alcohol, coffee, chocolate and so on. The members of this group are very helpful and will share their experiences with you but I do believe that for you now is the time to look at lifestyle and see what you can eliminate to help keep your condition at bay if you can.

Dslokes profile image
Dslokes

I’d recommend looking into having the ablation procedure done.....I had it done this year at 48 (I just found out that I have Afib in January). Knock on wood, I’ve had NSR ever since. I’m opposed to long-term medicine intake. Best of luck-

likestosing profile image
likestosing

I agree with mdubs above, about most everything he said. I had afib on and off for about 3 years. Then had an episode which lasted 3 months, no breaks! That convinced me to try an ablation as my doctor had been encouraging. I am so glad I did . No afib for 5 years after, and no anti arrhythmia drugs needed either. I have kept my bp under control with other prescribed meds. I drink half caff coffee or milder. Now at 6 and a half years out, I again get the occasional afib episode. Usually it comes on when relaxing after a large meal. I find Krebs Magnesium Potassium complex, and a Pepcid taken daily really help me, and I take an extra dose of the Magnesium and Pepcid at the start of an episode, which seems to bring me out of it in a few hours. I take a "water pill" daily, and think I tend to lose potassium because it is one of the types that can do that. So, I really try to reach the potassium RDA each day, and eat extra potassium if I am in afib. Sounds complicated but I usually take meds only twice a day, and it really is not a lot of pills . Everybody is different, but I really got a lot of comfort and tips from researching afib and learning from laymen and professionals on line. Other people find too much information makes them more, not less nervous. Since you are on prescribed meds and under a doctors care, you should check with him/her if you add supplements or over the counter products.

Tomred profile image
Tomred

hi dan lovell im in sympathy with you no one likes this feeling of afib ive had it about 30 years but only officially diagnosed 3 years ago so now im on bisoprolol and dronederone which leaves my heart working at slower rate and not as draining as it was before medication so it cannot be cured but yes it can be controlled thats the good news which you will become familiar with as time goes by i know its easy to think gloom and doom as i have too but then you become more understanding of your condition and realize you can live with this just try to cut down on all identifiable triggers drinking smoking bad sleeping patterns etc get on some meds and live your life good luck

Surreychica_1 profile image
Surreychica_1

Daniel I do offer you my sincere sympathy that at such a young age you have to put up with such an awful diagnosis. Can only imagine how frightened you are. But there are plenty of people here who are managing the symptoms of what you have and it can be managed and I am sure their help and reassurance will make you less afraid so that, as a young person, you can get on with enjoying your life as you should at your age. Sending cyber hugs to you xxx

Oneday47 profile image
Oneday47

Hello I’m 35 now and I was diagnosed when I was 26-27 years old, even though I had since I was 20 since I was misdiagnosed for the longest. I was pretty fit at the time and when I was diagnosed I was afraid like you and let it get to me to a point where I didn’t even work out since I had episode at the gym. I didn’t even want to travel at one point because I afraid of being far from a hospital. I’ve had 4 total ablation and 2 cardio versions. My advice and assurance that I can give you is make sure you always get a second opinion I’ve had the first three ablations and my second doctor said it was like he did nothing. Things will get better and I feel better with my new doctor I’m even close to working out like I used to. Find out if you have triggers that put you in afib if any and learn to “control” them. I know it’s hard but try not to stress too much about it because trust me that doesn’t help. Things will get better, you are very young so enjoy it and don’t let it bring you down. The treatments are better for afib now to. Feel free to ask a question and I hope this helped

Since you are so young, you might try to see if your diet is triggering your Afib. Here is the data I have accumulated:

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

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. 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 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??

But strenuous exercise doesn't help - perhaps causes dehydration??

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:

Cardiab.biomedcentral.com/articles/10.1186/1475-2840-7-28

A bit off topic Danlovell but a while ago I sent out a post about the names folk use on this forum and it raised quite a lot of interest. I think most of us assumed that you are a fella, but now we’re not so sure as you will have seen from some of the comments so, not that it matters a jot, spill the beans and put us out of our misery.....😂.

More importantly, hope you are feeling better today......

Danlovell profile image
Danlovell in reply to

I am a guy mate sorry 😂 sorry for the previous accidental kiss, had an episode yesterday lasting less than a minute after a good month or so of NSR... Just trying to tell myself it wont come back. Seeing a consultant on the 9th so will discuss how im feeling with him then. Thanks for all your help and advice

Danlovell profile image
Danlovell

Thank you everyone for your kind words and advice. I really appreciate it a lot.

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