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I am new to AFib and new to the site.
About two months ago, I woke up at about 4am with a rapid heartbeat that I thought was due to my PVCs at first. By 7am, it hadn't gone away, so I called my NP's office and was told to go to the ER where they quickly told me I was in AFib.
After not responding to IV Cardizem, they gave me Eliquis and Lopressor which did indeed slow my rate but left me in AFib. Long story short, I opted for the cardioversion and I was home by dinner.
Since then, I have been experiencing extreme anxiety which I am now just beginning to get under control. I continue to take Eliquis and Lopressor 2x daily and am now using a CPAP as I was diagnosed with sleep apnea following this event. I have a great new cardiologist, thank God, and his office and nurses are great as well.
I went for my in-person follow-up appointment with him about three weeks ago. He reinforced that this condition is very common, is not life-threatening (yes, he did go over stroke risk but assured me that I was on the best course with the Eliquis), is more of a nuisance, that I should go out and live my life normally and that I shouldn't worry because "he has my heart."
While reassured (as much as my anxious self allows), I have been doing some more research and was wondering if any of you can answer some questions for me since you have been there:
1. Is it normal to not have an electrophysioligist? My cardiologist has a fantastic reputation in his field here in northern New Jersey, and no one has talked about me needing to see an EP.
2. I was told that I cannot drink alcohol anymore. Is that true for all of you? While not a drinker at home, I do enjoy drinking socially when I am out with friends and finding myself mad at the fact that I can't anymore (I know that is not very mature of me!).
3. One disheartening fact that I have come across is the theory that "AFib begets AFib." Meaning that I am on a path to developing AFib that is not just paroxysmal, that I am on my way to persistent AFib. Is this true?
Any help with these questions or just words of advice for someone new to this world would be so much appreciated.
Wishing you all good health!
RevSue25, July 24, 2020 9:45pm EST
Hi, Susan. I just joined this community to look for a symptom new to me today and saw your post.
Many of your experiences have been mine, as well. It's very hard to come face to face with the realization that life depends on this bit of muscle in our chest that we can't directly control! Eventually we realize that it always has, and we never could control it --and we might as well relax a bit.
I've had afib for several years, since a high fever I ignored saw me off to the hospital, defibbed along the way. I'll go along fine several weeks, then have some activity. It used to drive me crazy...a time or two son would take me to ER because episode lasted hours in night, and it would stop at desk! Grrr. And even trusting my cardiologist, when heart is beating 172 or so, I want them alarmed! 😇. So...I've learned it will go back to normal. Has for 9 years now. I'm not so alarmed now. Faithful with CPAP.
I'm sure others will have input re drinking (I average about 12 drinks per year) and other questions. Just wanted to say hello, and let you know you're heard.
grayscot523, July 25, 2020 9:42am EST
Hi RevSue25! Thank you for taking the time to respond. You are right in saying that it's hard to come to grips with this new diagnosis and we are better off when we can let it go. I am working on that. The first month was a horror for me, and not really because of the AFib itself, but because of my fear of having another episode. I would track my heartrate constantly and worked myself up to a daily dose of extreme anxiety. I am getting better about that now and can go hours without thinking about it (thank God!). I hope to get even better about it as time goes on, to lose weight and to just accept my new always-sober lifestyle. I hope that you continue experiencing great health in the future!
Thumper2, July 26, 2020 8:27am EST
Grayscot 523, IMHO, if you have a cardiologist who is well-informed on AFib issues and can answer all your questions, then you probably don't need an EP. Glad you're on a CPAP. If you ever go the route of ablations, having your sleep apnea "under control" will increase your chances of ablation success. As for the development of AFIB, keep checking on your heart's condition over time. I had permanent AFib, no symptoms except for increasing fatigue, then saw an EP (after my aging cardiologist retired) and discovered my heart was quietly deteriorating (explaining the fatigue). By that time, ablations did me no good unfortunately. My EP did a special procedure involving my heart's His Bundle, which has restored me to a very good quality of life, thank God! Since I almost never drank anyway, I have no advice on alcohol. However, be sure to keep hydrated on water! Keep us posted as to how things are going.
grayscot523, July 26, 2020 9:43am EST
Hi Judy! Thank you for your reply. I really appreciate it. I sent a message to my cardiologist asking about an ablation and he says that I am not a candidate right now since my AFib is being kept under cotrol with the meds. I totally trust him, but I am going to ask him in December when I see him about the information I keep reading regarding ablation success in regard to when it is done, early on versus waiting untll the condition possibly worsens. I drink water like a fiend, always have, so no problem there, and I am slolwy getting used to using my CPAP every night (it's been about two weeks). It's good to hear that you are experiencing good quality of life. I think that's what we all hope for and aspire to and tend to take for granted when we have it. Best wishes to you for continued health!
BethClark, July 26, 2020 10:05am EST
Sorry that you're finding yourself in the "aFib boat" but glad that you're joining our merry bunch. You'll find a lot of support here and will learn a lot, starting with everyone's experience is a bit different. But, a very common theme is the anxiety that comes with this diagnosis. If you search through old postings you will find that people frequently discuss their anxiety about their condition. I've had two episodes, the last one almost 4 1/2 years ago. My doctor also said that I would be able to live a normal life with this condition. But for quite a while, like you, I was worried about it constantly. Initially was afraid to even go out for a walk in my neighborhood. The more I learned about aFib and the longer it was without an episode I became more comfortable with this condition. One thing that helped was going places with friends who I knew would have my back and would get me to the ER if I had an episode. Gradually I have extended my comfort zone. Sometimes I had no choice but to go somewhere outside of my comfort zone (like when my son was in the hospital in another area). The positive thing was that I did it without any issues. But I am still a work in progress. I am still letting the anxiety that I could have another episode keep me from traveling. At this point I think I would be open to traveling with a friend. (Easy for me to say now since traveling is on the back burner due to the pandemic.)
I am a Kaiser patient. When my first aFib episode happened they had EPs involved in my care. They then referred me back to my cardiologist, who is terrific, for ongoing follow-up. If the meds I am on were not controlling my aFib then I am sure I would be back to seeing the EPs. (The cardiolgist is local, the EP center further away.)
A lot of people on the forum talk about using watches to check their heart rate and heart beat. I have no interest in having a watch because I think I would be thinking about aFib constantly. That was the case when I had to take warfarin and think about how my eating and other activities were affecting my INR level. (At the time I was on other drugs that couldn't be mixed with the NOACs. My INR was in range only 25% of the time and my warfarin dose was constantly being changed. I was an anxious mess.)
Before I was diagnosed with aFib I had to avoid alcohol anyway because of other meds I was taking. I wasn't a big drinker anyway so eliminating alcohol wasn't a huge sacrifice for me. I do miss the social aspect that goes along with drinking but I'm used to it now. I just think about how unpleasant it would be if a drink triggered an aFib episode.
There is no cure for aFib, as you've probably been told. But I have never been told that paroxysmal aFib inevitably leads to persistent aFib. The point is to be treating it early to be able to live your best life possible. There are different treatment options that you'll read about. It's not a one size fits all kind of treatment; sometimes it's necessary to try different things and treatment might change over time.
Good luck on this journey.
grayscot523, July 26, 2020 3:33pm EST
Beth, thanks so much for that! I really appreciate everything that you wrote.
You are right about the traveling. It is something that I have thought about often as I took a trip to London/Liverpool in January, only four months before this happened. I often think about what would have happened if the AFib had first presented while I was away with my daughter, and think about how I might have to handle it in the future when travel is possible again. My friend who is a nurse practitioner and has guided me through a lot of this just keeps telling me that there are hospitals everywhere and if it gets to a point where I am traveling and I have an episode that won't correct itself, I just have to get myself there. That it is so common that any ER can handle a cardioversion if needed.
I know in my head that there are so many worse things with which I could have been diagnosed, so I have to just get on with it. I hope that my AFib case is similar to yours in that the episodes remain infrequent.
Thank you for reaching out and I wish you continued health!
bfboca, July 27, 2020 5:34am EST
Hi Susan. Re: new to Afib. A frustrating part of this forum and many conversations including medical articles about afib is that you don't know which type of Afib people have. Very big difference between paroxysmal and persistent or permanent Afib yet so many times it is not stated. And if paroxysmal, well what? How many times a year does it occur, how long does it last? Does it really affect your quality of life? Nothing wrong with going to a top cardiologist such as you are doing. There is also rhythm control meds out there that assist your heart in staying in rhythm hence fewer Afib events. My paroxysmal Afib has been with me for some 30 years. In a typical year, it occurs about 4 times and lasts an average of ten hours. I live with it and it's no big deal, Susan. Certainly not an ablation choice any time soon, if ever. Re: alcohol. Go ahead and try one social drink with friends going out and see if it affects your heart in any way. But alcohol is a trigger for most of us and is something many of us stay away from. As for myself, alcohol is what triggered my Afib decades ago and I gave up all drinking. The last thing I want to do is do something that may cause an Afib event and then go ahead and do it. Continue reading about the subject and what various triggers are and keep them in mind. What may be triggers for some, aren't triggers for others. Regarding "afib begets afib", I think you'll be able to judge that yourself rather easily over time as will your cardiologist. Try other forums like afibbers.org that have considerable material on the subject. Best of health Susan. Bob
grayscot523, July 27, 2020 8:18am EST
Thank you, Bob, for sharing your experience with AFib. It's reassuring to read that you have lived with it for so long and are relatively unphased by it. That is something that I certainly hope to acheve going forward. Best of health to you!
Thumper2, July 27, 2020 10:46am EST
Susan, I'm glad you will approach your cardiologist on the subject of ablation again. As many say, it's the closest thing to a "cure" for AFib that you can get. If you consider having ablation(s), be sure to have it done by an EP who has already done hundreds of them, successfully. All the best,