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Newly Diagnosed at 32 years old..Lone Atrial Fib?

Bellasmom176 profile image
14 Replies

Hi!! I was diagnosed 2 weeks ago with Lone Atrial Fib in the ER. In the middle of the night, my heart skipped a couple of beats and then took off very fast in a different rythem...I couldn't get it to stop so we called 911. They couldn't see the A Fib because they didn't have the 12 lead monitor, so they said it was SVT...My pulse was 240bpm...At the ER they put me on a cardizem drip to slow my heart rate, but 11 hours later my heart rate was lower, but my heart would not convert to NSR...So they gave Dijoxin. They were going to shock me, but right at 11 hours it converted on it's own....I had an Echocardiogram, EKG's Blood work, legs checked for blood clots and they found nothing...THey said my heart is healthy with no damage or inflammation..So it's Lone :( Anyway, my background is no family history of heart problems in our family, except my 86 year old Grandaddy has A Fib, but he got that a few years ago...I started getting palpitations 15 years ago, and they told me they were benign, so I lived with them...But everything changed when I got pregnant..In my 2nd trimester, I bent over and my heart did the same thing..This was the first time I had felt this, and it lasted 30 mins..ER couldn't catch it, so they did tests and said it was prob SVT from pregnancy...Then it happened a year later only lasted for 5 mins, so no one caught that either...Wore halter monitors and only catch palps and maybe sinus tachy...And then BAM! 2 years later this latest episode happens as I am turning on my left side in middle of night, and lasts 11 hours..A Fib :( So I am scared, confused, frustrated and worried....I am on 120 extended release of diltiazem which I already have low blood pressure so it's causing dizzy :( But they Cardio said quit taking it, just keep it with you if you need it..I am a little scared to get off it totally now...Seeing Electrophysiolgist this week, but I am not sure he will provide more answers since it's a lone A Fib???? My theory is this...I have had stomach issues for years and years...And high worry and stress...If I eat food or water, it feels like it doesn't digest, gets stuck in my throat, chest etc..My stomach bloats like I am 9 months pregnant, and I have gas in my stomach so bad it radiates to my chest..My heart pounds after I eat anything and I get palpitations during eating...All 3 times these episodes have happened, it's been a few hours after a very heavy meal and invovled me twisting my body to one side or bending all the way over....I have read that the Vagal Nerve can pop you right into A Fib, and my cardio said it happens a lot...He said this could all be a stomach issue but Electro will be able to know more...They did a colonoscopy on me and upper endoscopy on me and said it was gastritis, but didn't see hernia's....I know something is wrong with my stomach and that the heart and stomach are connected with this vagal nerve...Sorry for the long story, but I wanted to give my background...Any suggestions or ideas or tests, or just any advice would be so great right now....I am now so scared, I don't want to be alone and I have a 3 year old daughter, so I need to get this figured out and under control...Sydnee

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Bellasmom176
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14 Replies
TheStand profile image
TheStand

Sydnee,

I am sorry to hear you have to go through this...

First off.... Please try and calm yourself about this condition some. There are many of us here who have a similar story and can understand exactly what you are going through. So you are not alone in this. We have all been scared by this situation and not knowing what is going on with our bodies. But you are on the right path now. Your Cardiologist has done the right thing by sending you to see an EP.

You are correct in thinking it may be something to do with the meals. Many attribute the attacks to having a very filling meal although it's not been medically proven... It is know to be one of the triggers. Also you stated that it started while laying on your left side. That is also a known trigger for AF.

At the ER did they get an ECG done while you were in AF? That is the main thing that the EP will need to help diagnose and develop a treatment plan for AF. I can definitely relate to the many times you had attacks and no-one else sees it because it stops. That is the nature of this beast.. It is VERY elusive. It is almost like it has a mind of it's own and tries to hide.

32 is a young age but I know others in their teens who have AF so again you are not alone in this. You have started a journey that will be made much easier by understanding what is going on with your heart and learning about the treatments available for it. Please check out

stopafib.org

They have a wealth of information and can help you get a grip on this.

Some important questions for the EP...

1. Should I be on an anticoagulant?

This is probably the most important one.... You will hear the comment from others that "Afib won't kill you"! They are right...BUT the clot that can develop during an attack Can kill you...

2. Ask about "Rate Control VS Rhythm Control" medications. Find out which would be best for you. Ask about the side effects of the medications. Ask about the pros and cons of each.

3. Ask about the available procedures for stopping Afib.

OK there is a bit to this one.... First you are only 32 so most drs will tell you that, due to the nature of AF and the way the drugs work, you can not count on controlling AF with medications for the next 40 of 50+ years. And those side effects, from the meds, which they say are rare have 40+ years to happen. Also many EPs will want to try a medications first before talking about a procedure. Ask about the chances of success with an ablation or another procedure. I guess what you want to ask is what is the long term plan and are results can I expect?

4. What do I need to do to increase my chances of success with this our plan?

And this is the advice I give to all who come here with questions..... Search, Read, Study, Learn and get a Full Understanding of this condition and its treatments. The more tou know about AF will increase your chances of a good outcome.

Welcome to the forum.. Ask when you have questions, Rant when you need to vent or just write when you need to talk to someone who understands. We are hear to help and listen.

Tim

meadfoot profile image
meadfoot

Hi Sydnee.

So sorry to hear you are struggling right now. Stress and stomach problems trigger AF everytime in my case. I understand the vagal nerve plays a part. Once I get the dual stress and stomach problems coming together it is the perfect storm and I am kicked into AF with a vengeance. I take a proton pump inhibitor - Lansoprazole to help calm the stomach. I get loads of wind when AF kicks in. All very disconcerting. I have a small hiatus hernia too. I have found my own food triggers and suggest you keep a diary of foods which cause you problems. This is an awful malady to have and I describe it as having a time bomb strapped to my chest never knowing when it will go off. Take care and get all the support you can from relevant medics and this forum too.

Good luck.

Meadfoot. x

Bellasmom176 profile image
Bellasmom176

Thank you both so much for reassuring me!! The Dr's don't like to admit that there is a connection to stomach and palpitations/A Fib! It's crazy! There defintely is...I know I need to get this medicine adjusted, I am lightheaded and it's making my head foggy...The Cardio said just stop it all together, but I am going to see the Electrophysiologist Thursday and will ask him...I had a bad anxiety day today, and I feel like I haven't been able to calm down..I feel my heart pounding or racing, but when I took my blood pressure my pulse was 64..So maybe I just feel it pounding from anxiety...I agree with you about the bomb strapped to our chests..That's exactly how I feel! Have either of you taken the Cardizem or considered ablation? Any tricks to relaxing? I am so scared of having a fib again I am flipping out now :( I have been out of it for almost 3 weeks now...Sydnee

TheStand profile image
TheStand in reply to Bellasmom176

They tried giving me Cardizem when I was diagnosed with AF 13 years ago. I could not take it. It just knocked me out. I ended up taking Rythmol (propafenone) and it worked pretty good.

Yes I had an ablation done 7 weeks ago. I had 2 or 3 minor, very mild attacks in the first few weeks after (which the EP told me would happen) but have went the last 5 weeks without an attack. I know it worked wonders because the attacks I did have were so mild that I almost couldn't tell I was having them (my normal attack prior to the ablation) were very severe. And before I was having 1 or 2 attacks a week, so to have gone 5 weeks without an attack is amazing. As I have told others.... You just go to sleep and when you wake up it's over. I had almost no pain other than from laying in a bed for a day. I took no pain meds. I was tired for a few weeks and have since regained my energy and I feel great.

Tim

Bellasmom176 profile image
Bellasmom176

WOW!! That's amazing!!!! I am so glad you are doing so great!!!

I am going to talk to my Electro Dr...The Cardio keeps telling me that I don't want an ablation done, that if it's something that happens every couple years, it's not worth it to do an ablation..But I feel like, I would rather have the ablation done, then walk around every minute waiting for it to happen....

BobD profile image
BobDVolunteer

Hi,Sydnee, I am a great fan of ablation --- had three before they finally sorted me out four years ago . What I would say is that AF begets AF so the longer you have it the MORE you will have it.. At your young age I would not want to look forward to a lifetime of drugs so do ask you EP about the prospect. Tim is right although there are some risks to any procedure this was the very best for me.

Bob

skary profile image
skary

Hi Sydnee so sorry to hear this ; but believe me we've all been there and are still kicking AF's butt. I'm now in permanent AF but thanks to the people on here I'm loaded with questions for when I next see cardio man. My knowledge of " the beast" is growing daily and getting to know it is so helpful as it helps lose the stress by the unknown. It's been 7 yrs since I was diagnosed (doctors thought I had panic attacks for quite some time)& the stress I was under for that time with husband having terminal cancer was huge; but now I have the time to put my health concerns first......and I wont let AF stop me living my life to the most I can.

I'm going to start meditating again and may just start a group session as I did many years ago, and hopefully with the warfarin and weight loss I'll be able to have ablation.

Keep your chin up and talk to these people on here...in a few days they've given me so much info and support ... makes you feel less alone and helps to curb the fears by giving you an insight into how they have fought it.

cheers

Nikki

Bellasmom176 profile image
Bellasmom176

Thank you guys for all the help!!!! Skary, I hope you can have the ablation too!!! Bob I hear great things about ablation, even though the cardios here in Georgia, don't want a younger person to have it...You would think they wouldn't want us on meds the rest of our lives..ugh!! Anyway, I feel ready to face the electro tomorrow with good questions...I have been on Cardizem for 3 weeks, and just started getting really bad headaches the past week...It could be sinus related, but I wasn't sure if the meds would cause that 3 weeks in? Have you all had any headaches with the meds? I just take tylenol since I was told no ibuprofen...Sydnee

poppystorey profile image
poppystorey

please dont think i am silly but i read your letters and answeres daily with great interest i was diagnosed a few weeks ago ,and put on aspirin and bisoprolol,i see a cardiolagist on the 22nd,i have had tummy and digestion problems for years ,so bad i can often be sick after a meal ,is this normal ,i dont realy understand what pernament af is could you explain please i am 69 years old thank you poppy storey

Beancounter profile image
BeancounterVolunteer in reply to poppystorey

Hi Poppy

Yes that diagnosis is one scary time, certainly until you find out more about it, but if I can get only one thing across it's relax, you are going to see a cardio and they will sort you out.

OK Permament (persistent often preferred) A Fib simply means that your heart is always out of rythym, never in NSR (Normal Sinus Rythym) I have this, but virtually no other symptoms, so whilst my pulse is strange to say the least, really nothing else happening to me.

Others have Paroxysmal A Fib which is when people get episodes of AF of varying degree of severity; heart rate usually up but sometimes down; an episode can last hours or days, but in between episodes their heart is in NSR (normal sinus rhythm) Usually diagnosed by wearing a 7 day monitor unless the doctor happens to catch you in an episode.

What you need to do now is read, read and read, when you go and see your Cariod on the 22nd, you need to have a long list of questions to ask him, and if you look at Tim's post up above this one he (as usual) lays out all the things you need to think about and ask.

You will probably need to go on warfarin, the big risk of A Fib is stroke and warfarin reduces that considerably.

You are among fellow sufferers, so ask away anything you wish, and we will try and answer.

Best of luck

Ian

Bellasmom176 profile image
Bellasmom176

Hi everyone!! OKay I saw the Electrophysiolgist today..He looked over everything and said it's odd to have A Fib at such a young age, and also the other 2 episodes I had over the past 5 years, were more like SVT than A fib...This episode started out just like the other ones did, but after 15 mins, my heart rate went down to 140's but still flopping around in my chest in A Fib...So he had a thought..He is hoping that I have SVT that is going into A Fib, which isn't too common but it happens...So he wants to do an electo mapping thing in May, go up with catheters and try and get my heart to go into SVT or A Fib..He says if he sees SVT he will ablate it, and hopefully that's what cause the A Fib...If he doesn't and only sees A Fib or nothing he's leaving it alone, as he doesn't want to Ablate the A Fib right now, says it's riskier...So I know a lot of people who have avoided this procedure, but I am really scared and hoping doing this is the right thing..Has anyone had this?

danapu profile image
danapu in reply to Bellasmom176

Hi,, I'm in exactly the same situation now. Can you please update? I do hope all is well.

GaryCormack profile image
GaryCormack in reply to Bellasmom176

Hi, its 5 years on from your post. Ive just been diagnosed with lone Afib after an attack that lasted about 7 hours. I was just wondering how are you now 5 years later? I hope they sorted it. Would be great to hear back from you.

Im 30 and have 4 kids, its very worrying, im on a small dose of bisoprolol to slow my heart rate and hopfully stop it from going into afib again. Its put me out of work for 4 weeks as im not abke to drive untill 4 weeks have passed without an episode, 3 weeks remaining! Very stressed as i need to work and im a mobile engineer.

Look forward to hearing from you

Gary

A_Young_Fibber profile image
A_Young_Fibber

Could you update us on what you ended up doing about your situation? 

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