My Story and I'm thinking someone can relate?

[Elsie1955]

My AFIB story goes back several years.

It first began back in 2008. I had been having "spells" that were mild and usually went away with rest. But then that stopped working and I ended up at a cardiologist's office. They did a chemically induced stress test and placed me on Betapace and diltiazem.

This worked for several years, until 2014, when I began having almost monthly episodes of AFIB. Mine were sporadic, I was never in it daily and they knew this from the use of a halter monitor and, well, by now I could feel them, like a space alien crawling out of my chest. It was horrible. But visits to the ER when it happened resulted in cardio-conversion via infusion of medication. Cardiazem was what they pumped into me.

In 2015 I had one that didn't convert in the ER and they admitted me because they thought they would have to defribulate me. I was in Afib for 21 straight hours. Man- was I ever tired!!! When the doctor came in and said that if I didn't convert in the next 4 hours they would be doing it, I was not happy about that. Now please don't think I'm crazy over this next part but it really DID happen!

After he left the room, I said a prayer, basically one of those desperate ones asking God to defribulate me because, frankly, I didn't want them doing it. Mainly because I had this stupid image in my head of stuff you see on TV medical shows (which I've since quit watching lol).

Well, I prayed, yawned and leaned back and just as I yawned, there was a flash of light (kid you not!) Like an old-time camera went off. And the next thing I knew the nurse was leaning over me. She had been the one monitoring me (my hookups) at the nursing station. She asked if I was okay, I said yes, why?

"Your heart stopped- just briefly- and now you're in normal sinus".

The next day an electrophysiologist whose waiting list I had been on forever came to see me. They said he was in the hospital the day before and got word about what happened. He said "that happens sometimes" but I think he thought I was a nut lol. He changed my medication to Flecainide and Metoprolol and for the next 7 years almost I've been fine.

Until we moved to our new home in Jan 2021.

I began seeing my new cardiologist. Even though he had none of my past medical records, he decided I needed to have a stress test. Okay. I was used to that idea. In the past, they always did the chemically induced ones on me. But this office wanted to do the treadmill. So I said okay.

Well, that started this whole mess. The treadmill worked fine but they had problems with the halter monitor they strapped on me. It was giving out some bizarre readings and things just were not working right, technical issues. Finally, it ended up with one person's hand holding the monitor and me walking on the treadmill, connected to it.

When I went back to the doc, they said an irregularity showed up in my result. I remember thinking: well doh! You took me off of my medication and the machine thing wasn't working. I thought they would want to redo the test but when I mentioned what happened, the doctor said no, that wouldn't make a difference. Even then I felt I was being written off.

Back in again, this time the doc decided I should get a heart catheter to check for blockages etc. Okay, and since they said they were going through my wrist I was fine.

By now I had been off medication for 2 weeks.

The cath went well and the dr who did it said that a) I had minimal blockage, nothing to worry about in terms of plack build up and b) there was a slight narrowing in one area "where it bends anyway" but nothing to worry about because the flow was good- whatever that means.

Day 17 and I have an afib attack. I'm in the ER and they manage to convert me with cardiazem intravenous, told me to go back on my flecainide and sent me home. I call the cardiologist office and they told me to come in earlier than planned.

The cardiologist said he wanted to put me on a different medication- some stuff about flecainide contributing to plack build up or some such thing. He decided to start me on multac, but I had to come back off the flec for 3 days. Since it was going to take a while for the new med (we use express scripts) I had to wait. It arrived, I stopped the flec and began the multac.

Nightmare begins. Within 3 days of starting multac I have daily diahrea. Every morning (and I wont explain more). No matter what I did! I had to stop using my Metamucil as it only made things worse.

And, to make matters worse, nobody told me you had to eat a full meal with it! I had been taking multac like I took flecainide- empty stomach in the morning and meal at night. So it wasn't being effective (I read up when I got suspicious- only 4% effective without food!)

But I was also tired all the time. And felt like I was in a fog. I was MISERABLE!

I've finally gotten in, as of yesterday, to see the doc. I gave this multac 20 days to make sure it wasn't symptoms that would pass. They didn't pass.

Instead of saying that he wanted to put me back on flec, he said the next step was ablation! I was like, hold it! You told me when I first spoke with you on the first visit that ablation isn't the preference. I asked him why and he said I have 50% "narrowing" in this one area. I said the other doctor said yes but my flow was good. I got some word salad from him. Then he told me the other option, if I insist on medication, is for him to put me in the hospital for 3 days while they monitor me to make sure I'm okay on it. I was about to agree to that when I get informed that I would have a 45-minute notice before checking in because of the hospital he works out of being "so full" and in the meantime, I wouldn't be taking ANY medication! I even asked the cardiologist if he would prescribe the flecainide for me until this could be done, he said an abrupt no and told me that I could always look for a second opinion.

I choked back the tears and almost went along with it but something told me not to. To go get that second opinion. He said he was basing things on my record but he did NOT HAVE MY RECORD! He only had results he had since I've lived here and been going to him.

So, I've put in a call to another cardiology group he's not part of. I just feel as though he was pushing me into getting ablation, something past cardiologists and one electrophysiologist before didn't feel was necessary.

Anyway, as I sit here writing this, I'm still gobsmacked about what happened yesterday. I never felt so intimidated by a doctor ever. I don't know if he thinks himself above questioning or what, but I know my medical history on this, and he doesn't. If I can go 7 years on a certain medication without trouble, why change things?

So that's what's brought me here.

Last night, after researching, I decided to wean myself back on flecainide until I can get a new cardiologist. I used to take 100 mg 2 times a day. I took my first 50 mg last night. I'll take another 50 this morning and a 100 tonight. Advocate for myself.

[jeanjeannie50]

Hi Elsie

I'm afraid all that you have related to us is typical of what many of us have gone through with AF.

You mention defibrillation, we call it cardioversion. I can assure you that there is nothing scary about having this and they are very common. I've had quite a few and been very grateful for them putting me back into normal sinus rhythm. You are sedated, fall sleep and the next thing you're awake and the rhythm is normal. Your EP wasn't thinking of doing it without sedation was he?

Your EP sounds as though he's a little on the curt side, but surely he would know what was best for you? Or do you think he's looking for the money that performing an ablation would give him? I've had 3 ablations and to be honest the procedure is no big deal either, getting better afterwards is.

Flecainide, although a drug that works really well in stopping AF can have some nasty side effects and cause quite dangerous heart rhythms, that is why we need to be monitored often when taking it.

I think it would be wise of you to get a second opinion.

Jean

[Elsie1955 in reply to jeanjeannie50]

thanks jean

I had no trouble with flec though. Not in 7 years. Nothing at all. I don't know why he did it other than maybe not quite understanding that them taking me OFF the flec for 17 days didn't help? Given that they took me off it to do the catheterization, then back on, then back off... the multac gave me severe diarrhea which, by the way, has subsided to normal bowels within 3 days; extreme exhaustion; and headaches. None of which happened with flec.

Everyones' body is different I would suppose. But after all these years and not ONE cardiologist (nor even another electrophysiologist) thinking I was even a good candidate for ablation, I couldn't help but wonder. Esp. after the doctor who ran the cath said my flow was good and there was no mentionable plaque. I'm not sure what he's trying to "fix". So, I am seeking a second opinion.

[lwm1198 in reply to jeanjeannie50]

I've taken Metoprolol for several years now after a successful ablation and know it to be effective - one day I had an episode of high rates for no apparent reason and then discovered the metoprol tablet was still in my pill caddy, somehow missed though I'd gotten the others! I think it's a major help...

[jeanjeannie50 in reply to lwm1198]

Yes, I like Metoprolol too but have to keep to a low dose. I was once given 2 x 50mg one night in hospital and collapsed the next day when I got out of bed. The consultant came running with a long strip of paper in his hand saying look what your heart is doing. Well it meant nothing to me. My AF nurse said it could have killed me. I now stick to 12.5 mg or 25mg maximum.

[Elsie1955 in reply to jeanjeannie50]

It seems to me that we're all different and having different reactions. Man, oh man... does this ever get crazy! lol

[jeanjeannie50 in reply to Elsie1955]

We all respond to prescribed drugs so differently. Yep, it certainly is crazy.

[CDreamer]

I would second Jean’s comments.

Be really, really careful with Flec - it can cause very nasty affects and you need to be monitored whilst taking it with regular ECG’s, scans etc.

Multaq (Dronedarone is the generic name which we use in the UK) is not commonly used here so I can’t really comment except to say there are a few of our US comrades who take it and post on here seem to do well on it. I would seek second opinion and look at other treatment options. Always remember that different strokes suit different folks.

As to the fatigue and other symptoms - sorry but that’s just AF and if you have only occasional episodes, you have done well.

Best wishes and hope you find the forum useful.

[Elsie1955 in reply to CDreamer]

I was on flec for 7 years before the dr decided to put me on the mutac. I had NO side effects from the flec but plenty of them on the multac. I was started in the hospital 7 years ago, yes. But when they were messing with me here, I was on it/of it/back on it/then off it (long story). I'm weaning myself back on it until I can get in to see a new cardiologist.

[Singwell in reply to Elsie1955]

plenty of us do well on Flecainide although its usually recommended with some type of AV node blocker im case it causes the heart to race off into atrial flutter. I think you’ve done absolutely the right thing by seeking a 2nd opinion. Someone who doesn't read your case notes and who doesn't listen to you isn’t serving you as a patient.

[Elsie1955 in reply to Singwell]

I take it with metoprolol which they did not take me off

[Elsie1955 in reply to CDreamer]

I've been on it for 7 years (before the new guy decided to experiment with me on multaq).

[EngMac]

My experience is if a drug causes side effects listed on the drug sheet, it is likely not for you. Often there are other options. I never took drugs until 8 months ago. Since then I have had several drug challenges; sometimes heart stopping ones. Suggested solutions changed with every person involved. I no longer have a family doctor so medical help is very hit and miss. One needs to be healthy to get any just to withstand the process. Some doctors don't like to be questioned even when treatments and advice given one time completely contradict another time. I think we are sometimes a doctor's pitre dish. And if you wish to stop or change a treatment because the results suck, you are considered a non-compliant patient and future health specialists therefore cloud their decisions even though you are the patient who has negative results following their's or other's recommendations and even though you diligently follow advice that produces positive results. If I had practised engineering the way some doctors practice medicine, I would have had very unhappy clients and sometimes dead users of my designs and advice.

[Elsie1955 in reply to EngMac]

Here's an interesting twist. I went to a different cardiology office (the current one DID say that if I didn't like what he was saying I could go get a second opinion). So, I did. And Monday I went to the hospital that sponsors the cardiac rehab I go to. When I told the receptionist at the desk who my prior cardiologist is (was), she giggled. She tried to hide it but I saw it. Later I found out from a woman who had been a nurse there for several years that the cardiologist I was seeing had come to that group from the group he's present with and apparently left again back to the place where I was going. So I asked why and she said that there were complaints about him when she worked there.

This new cardiologist may agree with the ablation. If so, then I will reconsider. But everything I've read indicates that I am not at any more risk than I would be with getting the ablation. Mine is SO infrequent (as I said, my last real one was 7 years ago, this last one was because they took me off my medication for 2 weeks and 3 days) and even then I cardio converted in the ER.

[secondtry]

I am a Flecainide fan (8yrs on 200mgs) and it works for me being very consistent with the dose and when I take it, the same times and always 100mgs am & pm. Way back at the beginning in hospital, the doctor came in and said he was going to cardiovert me (defibrillate) and that was enough to put me back in NSR before he could do anything...the power of the Vagus Nerve!

[Elsie1955 in reply to secondtry]

I have been wondering about the Vagus Nerve and its role in all this. I'll tell you why. I know in the past if I ate something spicy I would get an attack- seriously. And I know the VN runs past or through the stomach. Do you think there could have been a connection? BTW, I've felt 100% back to normal cept for a slight sinus headache since going back on flec.

[secondtry in reply to Elsie1955]

Yes, particularly if you have a sensitive one. I have read all I can about the VN & suggest you start the long journey of improving your diet today. My conclusion is poor diet (eg processed & additives & much more) is a major contributory cause of AF. The stomach sends messages to the brain via the heart using the VN and unhappiness is the theme. This situation leads to anxiety and chronic issues..

PS There is no downside to this suggestion, apart from a thinner wallet, and it should help keep other chronic conditions at bay as we grow older. So in the long run a saving!

[Elsie1955 in reply to secondtry]

Ive looked into the Mediterranean diet and have even asked a friend who has lost weight steadily to help (he and his wife) by filling me in on what they eat. Do you think well of the Mediterranean? I tried Keto (one drs suggestion) and it tossed my triglycerides and such out the window! Being diabetic I need to watch those carbs I know. And kick salt to the curb.

[secondtry in reply to Elsie1955]

I don't follow any of the 'fashionable diets'. My journey has been.......first unexpectedly was at a lecture given by doctor-natasha.com which made a lot of sense, next I found westonaprice.org & lastly I add in tips from various diets eg more olive oil. Equally important is to source the best food of whatever you choose to eat, how its prepared and when you eat it in the day. I find a little bit of most things best as too much of one unbalances other things. Lastly, due to food insecurity and fraud, I am moving to buying more local. It all takes time and costs more money but is far more important (particularly in your 60's/70's) than many things I used to spend my money and time on.

[Ppiman]

I wonder whether you might have discovered that treating the heart's ills remains something of an art rather than a pure science? As I understand it, and I have never been given one owing to my heart's timing, the problem with rhythm control drugs is that they can affect this aspect and, as a result, increase the risk of unwanted ventricular issues developing. How far a doctor will go ahead anyway, given these risks, seems to be the art of their job, with some being more cavalier than others. Similarly, the low level atherosclerosis that you have and its importance could well, again, be a similar area where risk is taken by some doctors, but not others.

The same exists regarding ablation, I guess, with its being a balance of risks, especially in certain scenarios, with some in favour and some not.

I hope you find a way forwards that works out well for you. Thanks for writing your story. It was written really engagingly (maybe you should take up writing your memoirs)!

Steve

[Elsie1955 in reply to Ppiman]

Thank you and yes, I figure they call it "practicing medicine" because getting it right may never happen and they have to keep practicing lol. I got an appt today for a new cardiologist. Yanno, I remember something as well. This new cardiologist, during the stress test that he first did on me, the technician had to hold, in her hands, the holter monitor while I walked on the treadmill, the monitor connected to me by the nodes. I know from my records that I've had a first degree AV block for a long time and they said nothing to worry about, could even be the result of a birth defect. Since they didn't have this record (and refused it when I offered it) it makes me wonder if one or the other wasn't what showed up.

[Ppiman in reply to Elsie1955]

Now that sounds very likely indeed.

Steve

[AussieHeart]

I’m non-compliant like you as I don’t trust doctors! My experience sadly is most are self-interested in their pursuit to put us all in one box (symptoms/dx). I’m not anti-meds or procedures just knowledge-hungry for a comprehensive why? When I don’t get it, my distrust metre peaks! What I’ve learned is that Flecainide for some can worsen an arrhythmia. If paired with a rate control drug like Bisoprosolol or Metropolol it is less likely. I use both Flec/Biso on the lowest dose and like you still convert to NSR with a pause. This is dangerous and therefore the “why” to ablation being put on the table. I’m scared but I’ll do it to hopefully be taken off all medication and experience being afib free never stop asking why and get that second opinion and seek a practitioner you can respect.

[Singwell in reply to AussieHeart]

Hey, I didn't know the conversion pause was dangerous! Ive had it several times when taking extra Flecainide in the past (on advice obviously). It's not pleasant that’s for sure- one time I was panting like I was about to give birth and the room started moving around - husband caught the pause on my Kardiamobile. The reading if you please for that event was NSR. Since ablation I've not had to take these higher doses so haven’t has a pause for a while.

[AussieHeart in reply to Singwell]

Hi Singwell, if like me the pauses are long you faint or have seizure-like episodes. Ask your EP next visit to explain your pauses. It can raise your risk of stroke. My EP is unsure whether Flec is causing the pauses or something else hence urging me to have an ablation.

[Singwell in reply to AussieHeart]

Thanks for explaining. It took me a while to find put what these eventd were - people on the forum told me - so i think its happened 3 times in 3 years. And not since ablation even though my first didn't work well. So, personally I'd recommend ablation for that alone.

[Elsie1955 in reply to Singwell]

thats wild because Ive never had any side affects from flec. But buddy I sure did with Multaq!

[Elsie1955 in reply to AussieHeart]

The thing is, there was only one other time in my life when I didn't comply. That was a really weird thing. The dr had said no general anesthesia since they were only removing a growth from my stomach area. Then I'm there in the prep and his son comes in saying he's going to be my anesthesiologist. I don't think so! I had been through it before completely awake and knew a local was all that was needed. I actually wanted it done in the office!

Anyway, I kind of go on the Judge Judy approach: "If it doesn't make sense it's probably not true". In this case, "if it doesn't make sense you probably don't need it".

I am paired with metoprolol. That was done in another state, by another electro-cardio doctor (one of the best in Dallas TX) and I've not had as much as a flutter--- until now. And given what I've been through the past three years (Mom died, sister died, I had to decide to remove a friend from live support, dog died, I moved, the move was crappy and I got covid twice) gee you would think that would be afib time! Nada.

[Janith]

l always follow my gut (inner voice) … it is our Almighty guiding us … when you said the prayer and you reverted back to sinus rhythm … He heard you! Always listen to that inner voice … it will take care of you because it is Devine intervention. Of course make good and researched/informed decisions … Also, the fewer changes the better … if it isn’t broken, why fix it? Best always, Jan

[Elsie1955]

Thank you so much Janith! This was something that I had to repent of in prayer Monday night. I asked the Lord to forgive me of not being faithful to the promise and keeping my side of it. He did His, I should have kept mine up. But the Lord is faithful and I believe leading me to the right places now.