New Afibber looking for support

Hi everyone,

New to the forum and new to afib. I’m a 33 yo otherwise healthy male. Back in June I had my first episode of a fib. I was standing in my kitchen cooking bbq sauce for some ribs I was making and out of nowhere I had palpitations that felt to me like a run of SVT. I’m a pharmacist that works in the ER and my wife is an ER nurse so I laid down and tried to vagal out of it with no luck. About 10 minutes after it started we called 911 and I got an ambulance ride to the ER (at this point I’d felt a little different like something was flopping around in my chest). As soon as the medic arrived and got me on the monitor I was clearly in afib. I got two liters of fluid and more or less laid around in the ED for 5 hours and right before I was about to get diltiazem I converted back to NSR. I am pretty sure I’ve been in NSR ever since. My questions are really related to how people deal with the anxiety associated with it (I mildly panic anytime my heart rate is over like 110) and how people get past the stage of being afraid to do things. I’m currently limiting myself in lots of ways just for fear of having another episode. I’ve had a cardiology follow up and had a normal echo last week and I have a first meeting with a local EP on Tuesday. Just looking for some support. I haven’t really been this freaked out or scared about my own health before. I didn’t mention but I’m married with 4 young children and I think that increases my concerns. Any support or advice would be greatly appreciated.

Patrick

Relax,

I had afib for 11 years (5 undiagnosed and 6 diagnosed). Dr. said it was mitral valve prolapse causing an irregular hear beat for the first 5 years - WRONG.

Once caught on an ECG and diagnosed I went on meds, then I had another 190 episodes over 6 years, always stopping on their own, anywhere from a couple of hours to 72 hours. Never went to the ER, and didn't worry. Led a 99.99% normal life doing everything I wanted to do (skiing, windsurfing, golf, scuba diving, jogging, hiking, weights, etc.). If in afib, I didn't work out, but that was it. A successful ablation brought it all to an end 11 years ago.

With that said, everyone is different and afib seems to impact lifestyles in a wide variety of ways, but if on a blood thinner to prevent a stroke, it won't kill you, it may just cause you to modify your lifestyle a bit but worry accomplishes nothing good. I was 52 when my afib started. Now 74 and still doing everything I want to do.

Hi Patrick,

I was first diagnosed at 40 and was in great physical condition. A friend of mine who was about the same age as you and also in great shape appeared so young and healthy that when he was at his EP's office the nurse walked into the room and said sorry and turned around and left because she thought she had the wrong room. I second Ken's advice to relax and would also encourage you to continue educating yourself on afib like you're doing now which may help with the anxiety. Many on here including myself have suffered from extended bouts of afib (my longest was seven months) and it's usually not harmful. The danger is an increased risk of stroke as I'm sure you know.

Things that were helpful for me in the beginning:

1. Understanding my risk of stroke CHADS-VACs.
2. Understanding Rate vs Rhythm control.
3. Investigating possible triggers (my main one is alcohol).
4. Get an at home sleep study (even though I didn't snore and wasn't tired in the morning I was diagnosed with OSA which has been linked to afib).
5. Find out if any of your relatives have been diagnosed with arrhythmias, OSA, etc. Both the father and brother of my young friend I mentioned also had afib. Keep in mind it's possible they may have an undiagnosed condition so it may be helpful to ask if they ever feel any fluttering, etc.
6. Afib is a progressive disease. My afib condition was paroxysmal for three years before progressing to persistent. I waited until it was persistent before I had an ablation and if I could go back I probably would have been more proactive with treatment and had the ablation sooner as I've been told it can be more difficult to treat the further it progresses.
7. Since you work in medicine I'm sure you already know this but it bears repeating, if you decide on an ablation find an experienced EP. I ended up selecting Dr. Natale.
8. I'm a man of faith so I went deep with Phil 4:6-7 to combat feelings of anxiousness.

I'm probably forgetting some things but I'm sure others will chime in.



Edited 2 time(s). Last edit at 07/28/2019 01:20PM by Leo J.

Hi Patrick,

Assume at the ER you were diagnosed as having afib, not just SVT?

Wonder if you think your trigger was vagal or adrenergic?

I ask, because for those with a vagal trigger, it is usually a delayed trigger from longer duration endurance exercise, somewhat after the fact. A sympathetic trigger is usually triggered by intense activity at the moment. For example a friend who'd shot a deer and was trying to carry it up a steep hill.

I have a hunch your trigger is vagal, from your description. Hence why "vagaling out of it" would not work.

If you are vagal, you may be able to do activity, but moderate somewhat. For example, I have vagal triggers and for me, it is the product of intensity and duration. Hence I can do short duration intense activities (think Tabatas) or long duration lower intensity activities (I went for a 13 mile hike today, but didn't push myself). High intensity long duration activities are a trigger. I used to compete in the Pikes Peak Ascent race (13.3 miles gaining 7800' & topping out over 14,000'). That was a trigger. Other less intense activities, but that "look like" the Ascent are also triggers for me.

George

Leo and Ken,

Thanks for the encouragement. I think working in a hospital has distorted my view. In general the healthy afibbers aren’t spending much time in the hospital and I see the sickest afib patients and equate them with me or at least relate my situation to theirs. I’ve found it really hard to fight off the idea that this could rapidly deteriorate my life (and possibly end it) even though I know people live with afib for decades. I obviously want to do what I can to minimize my occurrences and keep healthy and I’ll be reading posts on here and educating myself as I can to do that. Just really want to be able to throw off the limitations I’ve put on myself as they don’t just affect me but also my wife and kids. Hopefully I’ll get more comfortable with this new reality soon.

Patrick

Hello Patrick and welcome.

It appears you're on the right track. One thing to do would be to try and figure out exactly what your triggers may or may not be which can be tricky. Also at this point you shouldn't be too concerned.

I was first diagnosed at 23 and had my first ablation @43. The time between those years was spent racing bicycles, lifting weights and doing most anything I wanted to do.

A-fib had minimal effect on my life during those years. It would actually go dormant at times where I would only have one episode a year or maybe not at all. Or at least that I recognized as I was very symptomatic. It would even wake me at night occasionally.

Hey George and Rocketritch,

Thanks for the replies.

George,

I'm not really sure what my triggers are or if this is vagal or sympathetic mediated afib. My one episode happened standing around in my kitchen. My only activity for the day was washing my cars outside (which it was super hot) and chasing my kids around a bit. I was doing a horrific job of hydration prior to this episode and have since been drinking an absolute ton of fluids. My only real guess at this point is that dehydration played a big part in this particular episode. I guess right before it started I did bend over pretty quickly to pick something up off the floor but who knows if that really had anything to do with it. I'm obviously hoping that this was a fluke or a "holiday heart" episode but I have my doubts. I'll keep my eye out for triggers if more episodes present. At least so far I haven't had any at night or when lying down.

Rocketritch,

Hearing about someone who went 20 years between diagnosis and first ablation is incredibly relieving and encouraging to me. Especially the fact that you seem to have led a restriction-free life during that time. I understand that it might not work out that way for me but I'll definitely be praying for that kind of outcome for myself as well. Do you mind if I ask, how many episodes per year were you having? How long were they lasting? What made you go for the ablation eventually? I obviously don't think I am there yet but I am interested in what the tipping point is for people to go for the ablation.

Hey Ken,

Did your EP tell you it was cool to stay at home? Were all your episodes short (as in less than 10 hours) or did you have longer ones? Did you ever have an episode at work? What did you do then? How about while driving or traveling? Were you on blood thinners? Are you on blood thinners now?

I totally understand where you are coming from I had my first episode in late November 2018. My first post here was titled "how do you get pas the initial doom?"

I felt like I had been sentenced. It seems as if Afib really, really affects people and those who have never experienced it don't understand at all. I've been told "well, if you have to have a heart condition, Afib is it?" "It won't kill you." "Take your meds and you'll be fine."

While those things may be true....it was a scary experience for me. And, for months afterwards, I pretty much kept my fingers on my pulse to make sure it wasn't happening again. I'm very heart aware and any little skip, etc., gets me panicky.

I was on Eliquis for about 3 months until I saw an EP, who told me to stop taking it because my CHADS score was "1". I do take a beta blocker and a calcium channel blocker for my HBP (which I had been in denial about for years).

I haven't had another episode since then (knock on wood). I take Taurine, Vit D3, B12 Magnesium and Vit. K.

Just read a lot on the forum because there is a wealth of knowledge here.

Bending to the floor and some body positions Can trigger my vagal afib or short runs of PACs.
Precisely, last saturday, I made a quick wash of my car, which had me bending down repeatedly in a short period of time. I finished the job and, then, I was back in my living-room for some five minutes when I suddenly began feeling lots of ectopics. Happily, afib did not start ( I quietly moved around, drinking slowly some water - had I sit down for a couple minutes, I'd had afib).

Taking things quietly is of great help, as said, but when one's not used to afib, it's not easy.

My very first afib episode came one day around 2 am, as the siren of my home alarm frighteningly awoke me. It was nothing serious, but I went back to bed with an incredibly irregular HR. I just thought it was an effect of stress and that it would settle down, but it did not. I went to work at 6:30, having had very poor sleep, and spent the whole day in the office, feeling weak but without any pain. At 6 PM, I went to see my GP, but self converted in the waiting room. Of course, ECG was normal and no one knew I'd had afib.

My second episode came a tenth days later, around 10 PM, as I was reading in my bed. I went to the ER and was diagnosed with afib and flutter intricated. They had me electrically cardioverted about 15hrs later.

From that date, any afib episode was awful. I knew it was afib, I was full of stress, I was fully tuned to my HR and it made things worse. It took me months to get used to afib. I've had ablations. I've still afib from time to time, but it's short (less than 2 hrs), I don't panic any more.

Believe me : stress makes things worse.

Welcome Patrick - The info you'll find here is fantastic. Sometimes it helps just sharing your experiences in this community. There's lots of well-informed people here, and they're not always in agreement on things like treatment or medications, but you can become knowledgeable and make smart decisions from info here and your own personal health care team. I can say if wasn't for Shannon and Carey, I'd in all likelihood still be in afib.

My only advice and opinion is that there is no shame in using a benzo to tackle your anxiety. If it lowers your stress and consequentially your afib burden, then that's a good thing.

Best to you as you sort out your treatment options if your afib comes back with any sort of frequency. I think for most it does, unless you self-induced via holiday heart or perhaps an incredibly stressful experience that might have triggered it.

Patrick

I had paroxysmal AF from my early twenties for about 35 years, finally diagnosed by accident. I refused to let it affect my life except when it was actually happening, Scuba diving was my passion and many times I would sit out a dive because I didn’t feel quite right, but as soon as I felt back to normal I would be underwater again. Since I had it for a very long time without even knowing what it was, I didn’t have any anxiety, just used to slow down until it stopped.

The episodes happened more and more frequently, and lasted longer until I was in highly symptomatic, persistent AF and any form of exertion, including scuba diving, was definitely off the menu. But in May, 2003, 4 months after ablation, I was on a liveaboard dive boat in the Maldives and back underwater.

It's not fun, but is fixable if you go to one of the top EPs, and there are many worse things to have IMO.

Gill.

Kate,

Did you ever get through the "doom"? Did it ease over time? Did you have some tools (distractions/techniques) to help you through it? I'm significantly better now than I was 3-4 weeks ago but I still feel it.

Pompon,

Sorry to hear you haven't found your afib "cure" despite your ablations. It sounds like your episodes are shorter and maybe less frequent? Have you found it much more manageable now?

ABPage,

I really hope it turns out to be a one time thing (Holiday Heart, Dehydration, stress) but I doubt it based on what I can find about those things. As far as the anxiety goes, I am working on seeing a counselor (haven't met yet) to see if I can work through it without the need of drugs like benzos to help. But I totally get your point. If that what it takes to decrease my afib burden, then so be it.

Gill,

Man your story is so encouraging. The idea that anyone has lived 35 years with afib, mostly restriction free, then underwent a successful ablation, and continues to live restriction free brings me so much hope. I know it may not work out for me that way but my God I couldn't have imagined that was even possible.

Thanks so much everyone!
Patrick

pgrove1 said: Hey Ken,

Did your EP tell you it was cool to stay at home? Were all your episodes short (as in less than 10 hours) or did you have longer ones? Did you ever have an episode at work? What did you do then? How about while driving or traveling? Were you on blood thinners? Are you on blood thinners now?

Afib didn't keep me from doing anything, except working out. Too out of breath to accomplish much. I had 190 documented episodes after diagnosis (6 years), and about 100 before diagnosis (5 years). Of the documented episodes, the shortest were usually around 2 hrs. I had 23 episodes over 24 hrs. Longest was 72 hrs. I had episodes doing just about everything, but they didn't have much of an impact.

I went for an ablation because I wanted to go on some European hiking trips and didn't want to do it with afib. 6 months after the ablation, my wife and I spent 7 days hiking in the Dolomites in Italy. A couple of years later we did the Tour du Mont Blanc - a 10 day, 100 mile hike around Mont Blanc (France, Italy and Switzerland)

Hi, Patrick,
We're all different but, as you guessed, my repeated ablations helped a lot. Before any of my 4 procedures, I had about 2 episodes/month, lasting 15-24h with awful symptoms. My BP (usually about 110/70) falling as low as 80/50, with an AVG HR going from 85 to 140. The first couple of hours were the worst for me. Weak and having to go to the toilets every 20' or so. Very scaring and invalidating. I was under stress : would it stop or not ?

Ablations didn't cure me, I've now a "cycle" around 8-10 days from episode to episode, but they're short with lighter symptoms. Afib does not sustain easily. I may be in NSR for some seconds, then back to afib.
I've just had an episode today starting at 0:58 AM. I just drank some water and tried getting back to sleep. I barely did, then stood up 20' later to go to the toilet. Afib stopped then. I had another short run of afib immediately after getting back to bed, and it was over.

I don't pretend taking things quietly can prevent or stop afib, but I'm sure it helps lowering the symptoms and, maybe, shortening the episodes.

I don't take meds anymore. They do nothing against my afib, and their adverse effects are more invalidating than afib or ectopics. Of course, it's me, and you're likely different, but my advice is "try to relax". Afib is less dangerous than one might think, from the moment you're diagnosed and followed by a good EP.

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pgrove1
Kate,

Did you ever get through the "doom"? Did it ease over time? Did you have some tools (distractions/techniques) to help you through it? I'm significantly better now than I was 3-4 weeks ago but I still feel it.


I have to say I am better. I don't think about it constantly. I think it has helped to educate myself. Before my episode, I knew NOTHING about Afib. Reading this forum, asking questions, and time passing have helped.

I have only had the one episode, but I will tell you if and when I have another, I expect I will freak out . I keep telling myself that the first one passed, stopped on it's own and in the process, all the tests confirmed that my heart was otherwise healthy. (The EP said I have a "fantastic heart.")

I read somewhere that after you go through several episodes, you start to relax more because you get that they are not going to kill you . Only time will tell if and when I have another one, but like you, I'm not very confident.

I think what set me off on the initial bad track was my ignorance and the time in the ER. They did everything they were supposed to do, except educate me. They told me NOTHING about Afib. They just sent me home on BP meds and Eliquis (and that was after going back and forth whether or not it should be Eliquis or baby aspirin). And, at the follow-up cardiologist appt., she was just basically there to take my BP and prescribe another drug (since my BP was still a little high for her liking). She barely mentioned the AFib and when she did, it was in passing, like it was a stumped toe or something.

I took it upon myself to find an EP and make a consultation appt. with him. That was very helpful.

Take care.

Hi everyone!

Thanks for all of the responses and support. I'm given hope by many of the stories I've heard and my goal now is to hold onto that hope and cling to it when I'm feeling particularly anxious. Would love to be lucky enough to have minimally symptomatic, super infrequent, very slowly progressing, or easily treatable AFIB. Obviously not everyone is that lucky but I'll use the tips I find here to increase my odds of a positive outcome.

Patrick

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Rocketritch,

Hearing about someone who went 20 years between diagnosis and first ablation is incredibly relieving and encouraging to me. Especially the fact that you seem to have led a restriction-free life during that time. I understand that it might not work out that way for me but I'll definitely be praying for that kind of outcome for myself as well. Do you mind if I ask, how many episodes per year were you having? How long were they lasting? What made you go for the ablation eventually? I obviously don't think I am there yet but I am interested in what the tipping point is for people to go for the ablation.

My episodes early on would convert within a few minutes. They almost always occurred when on the bike, after a good workout at the gym or a night of overindulgence at the bar.. Once I converted I could continue to ride and never experience another issue that day until much closer to the time I had my first ablation. Alcohol induced episodes always took longer to convert. The only times I had multiple events early on is if I would continue to compete during an event. I would still convert but it would take much longer. And the lactic acid that built up in my legs would surge through my body and reek havoc on the rest of my body. This almost alway lead to another event sometime during the race or later in the day.

Like I mentioned, the year leading up to my first ablation things had become much worse. My episodes were becoming more frequent and would happen even when I wasn’t on the bike. It also took much longer to convert. That was a terrible time, I remember during several training rides going out of rhythm and trying to carry on. It was horrible but I
was intent on not letting it get the best of me. Foolish I know. The month leading up to my first ablation I was in persistent flutter.



Edited 2 time(s). Last edit at 07/30/2019 12:10PM by rocketritch.

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rocketritch

Rocketritch,

Hearing about someone who went 20 years between diagnosis and first ablation is incredibly relieving and encouraging to me. Especially the fact that you seem to have led a restriction-free life during that time. I understand that it might not work out that way for me but I'll definitely be praying for that kind of outcome for myself as well. Do you mind if I ask, how many episodes per year were you having? How long were they lasting? What made you go for the ablation eventually? I obviously don't think I am there yet but I am interested in what the tipping point is for people to go for the ablation.

My episodes early on would convert within a few minutes. They almost always occurred when on the bike, after a good workout at the gym or a night of overindulgence at the bar.. Once I converted I could continue to ride and never experience another issue that day until much closer to the time I had my first ablation. Alcohol induced episodes always took longer to convert. The only times I had multiple events early on is if I would continue to compete during an event. I would still convert but it would take much longer. And the lactic acid that built up in my legs would surge through my body and reek havoc on the rest of my body. This almost alway lead to another event sometime during the race or later in the day.

Like I mentioned, the year leading up to my first ablation things had become much worse. My episodes were becoming more frequent and would happen even when I wasn’t on the bike. It also took much longer to convert. That was a terrible time, I remember during several training rides going out of rhythm and trying to carry on. It was horrible but I
was intent on not letting it get the best of me. Foolish I know. The month leading up to my first ablation I was in persistent flutter.

Rocketritch,

Would you mind sharing some of the details of your story? When were you first diagnosed? How long between diagnosis and first ablation? How many ablations have you had? Are you now afib free or still battling?

Rocketritch,

Would you mind sharing some of the details of your story? When were you first diagnosed? How long between diagnosis and first ablation? How many ablations have you had? Are you now afib free or still battling?

I'll link to my blog and a post I did a while back that kind of tells my story. It's a write-up I did for someone earlier on for a blog or something.

Like I said before it all started when I was 23. The first doctor I saw for it was a GP. I had an echo done at that time and some other tests. He said it was probably nothing and to just carry on with my life.

I was officially diagnosed when I was 25 by a cardiologist that I saw up until he retired last year. I went through a couple before I found him. He made me feel comfortable with what was going on with me.

I've had 4 ablations now but only count it as 3. My first lasted 10 years. Tre second by the same EP lasted about 3 months. All he basically did second goround was touch up what he did before. When that one failed he bowed out and was recommending I have a laproscopic ablation done.

I've had 2 more done in Austin. First last July and the second just over 2 weeks ago. If you read through my posts on this site I go into detail about all of that.

Here is the link to that write-up I did. There are allot of other posts on there about my experiences and life in general. There are some earlier posts about my first ablation and things leading up to it.

[afib-rider.blogspot.com]

Wow man! You are in your early 40s and are on ablation #4! That is so tough man. Inspirational that you still bike and live your life. I'm not sure how you manage. Hope the road trip wasn't too bad for you guys. It sounds like your recovery from all 4 ablations has been pretty successful. It's so early in my journey admittedly but that sounds like so much to overcome. And if you don't mind me saying, so much expense. I can't imagine 4 ablations with hospital stays were cheap....

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pgrove1
Wow man! You are in your early 40s and are on ablation #4! That is so tough man. Inspirational that you still bike and live your life. I'm not sure how you manage. Hope the road trip wasn't too bad for you guys. It sounds like your recovery from all 4 ablations has been pretty successful. It's so early in my journey admittedly but that sounds like so much to overcome. And if you don't mind me saying, so much expense. I can't imagine 4 ablations with hospital stays were cheap....

Early 50's

There are several people here having had repeated ablations. I don't remember having read the procedures itselves having been a problem. There are risks, of course, but the procedures are now well mastered. PVI is nearly routine and more elaborated ablations are frequently performed.
I've had 4. Even 5 if I count my very first RA flutter ablation. No one was a problem for me. I always saw ablation as a solution, since meds don't work for me and I'm symptomatic.
I'm not afraid by another procedure. It's just a matter of time, my last one was only 8 months ago. I've to talk my EP about this, the main problem being triggering afib while in the lab.



Edited 1 time(s). Last edit at 08/02/2019 03:53AM by Pompon.

Pompon,

Obviously everyone here knows better than I do from experience, and so much of it sounds like a personal choice as well as personal vagaries of afib, but it just seems like so many procedures, and heart procedures, with low, but still some risk. I can imagine struggling with that decision although I guess maybe after you have 1 ablation, if it goes well, helps, and there are no complications, it's easier to envision doing further procedures.

There seems to be such wild variations from people that can live with minimal symptoms/minimal episodes, to those who are so symptomatic or have such frequent episodes that ablation seems like the only option. Impossible to know which path or any path in between that I might end up on. Just try to deal with it when it happens I guess.

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pgrove1
Pompon,

Obviously everyone here knows better than I do from experience, and so much of it sounds like a personal choice as well as personal vagaries of afib, but it just seems like so many procedures, and heart procedures, with low, but still some risk. I can imagine struggling with that decision although I guess maybe after you have 1 ablation, if it goes well, helps, and there are no complications, it's easier to envision doing further procedures.

There seems to be such wild variations from people that can live with minimal symptoms/minimal episodes, to those who are so symptomatic or have such frequent episodes that ablation seems like the only option. Impossible to know which path or any path in between that I might end up on. Just try to deal with it when it happens I guess.

I fully agree with you.

Ablation was the only route for me. In 2009 I was in permanent flutter leading up to my first ablation. I was functional but very hyped up.If it had been persistent afib for that month leading up to my ablation I don’t know what I would’ve done. I was and still am very symptomatic.

So far as the ablations go I was never Apprehensive about any of them. I’ve always had complete confidence in the doctors that I’ve dealt with. If I don’t have confidence in the doctor I don’t stay with them. Ablation isn’t for everybody and shouldn’t be entered into lightly.

Patrick

The most important thing, as most people here will tell you, is to choose your EP very carefully. Ablation is one of the most difficult procedures and many EPs aren’t very good at it but are keen to improve their skills. Beware of them!

You need someone who has done thousands of ablations and who does many every week. There are also a few EPs who have 'the gift' in their hands, Dr Natale in the US, and Profs. Haïssaguerre and Jaïs in Bordeaux are among them. Prof. Haïssaguerre (now retired I think) did mine in January 2003 at a time when very few EPs would even attempt to ablate long term persistent AF. As I told you previously, I have now been in normal rhythm for over 16 years. He gave me my life back.

Gill (pronounced Jill, and female)