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.
never stop asking why and get that second opinion and seek a practitioner you can respect.
Heart rate in afib and when to go to ER or A&E
Self identifying type of arrhythmias
Paroxysmal Afib at 60
Flecainide with Afib and LBBB?
