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Lost and Confused
Hello to all,
I am 57 years old and on Dec. 5, 2019 I was diagnosed with paroxysmal atrial fibrillation with rapid ventricular response. I spent three grueling nights in the hospital, two in the ICU. While in the hospital I was told that is was in AFib and that I needed to be converted. I was started on a cardizem IV drip, and recieved Lovenox injections. After two nights, I still had not converted so they added Amiodarone to my drug cocktail. By the third night, I had not converted so they scheduled a electro-conversion for the next day. I converted to normal sinus rhythm just prior to the electro-conversion. They monitored me for about eight hours to make sure I maintained NSR, which I did. During my stay in the hospital, I had an echo-cardiogram, a nuclear stress test, a chest x-ray, and continuous blood-work. All of the tests came back as normal, except for my Magnesium and Potassium levels, which were treated with pills. The hospital released me and told me to check in with my cardiologist in about three weeks. The whole time I was in the hospital the doctors maybe spent 20 minutes, if that, talking to me. And then after my four night ordeal just released me with prescriptions for Amiodarone, Eliquis, Cardizem, Atorvastatin, and Potassium. They told me to follow-up with my cardiologist in three weeks. I scheduled a follow-up much sooner and have since spoken with my hospital assigned cardiologist. I told them I was not comfortable taking Amiodarone and they replaced that with Metoprolol. The cardiologist told me I have AFib, I have PVCs, and you are stable, so, see you in six months. I just feel lost and confused. What are my next steps? How do I find a EP (in the Houston, TX Area)? I since bought a KardiaMobile EKG and I am monitoring myself, but, I found out that I could get false positive readings for AFib because of my premature heart beats. So, how do I know when I am in AFib? If I do go into AFiib should I go to the ER?
skk1949, January 15, 2020 1:13pm EST
Hi Rick8285 I was diagnoised with paroxysmal afib about 19 years ago . I was put on several meds mainly rhytmol, lopressor, coumadin and obtained good control with some episodes of break thru afib over the years I had stress test, echos, medication changes but stayed on rhtymol and lopressor with some adjustments in doses. came off coumadin and took no blood thinners for several years up to this last year when out of the blue i went into afib uncontrolled with a rate up into 160's. Very scary. My lopressor was increased and sent to cardiologist who did cardioversion which did not work I was then put on amiodarone with my other meds and went back in about 3 weeks to repeat cardioversion and a loop recorder was placed which monitors your heart it is placed under your skin and have stayed on the amiodarone ,lopressor and blood thinner...I no longer take rythmol. I have been in normal rthym with occasion feel of a skipped beat (pvc) I feel so much better my rate is usually 60 -70's . I have found from experience with cardiologist they don't spend a lot of time with you and often space follow up appts for 3 to 6 months, they dont give as much info as you expect unless you ask and then need to be specfic...they tend to look at afib as more or less a minor problem although it is very scary to us. But millions of people live with afib and their quality of life is good. a lot of people dont know they are afib as they dont feel it and others can definetly feel it. perhaps you should find another cardiologist that you are comfortable with usually an EP will see you after seeing cardiologist as the EP will want to know cariologist findings and what has been done before they do an ablation. Why don't you want to take amiodarone ? Read up on afib..lots of info on the internet. Try to relax believe me I know this is very hard as when in afib it is on your mind constantly maybe a anxiety med would help at least for awhile. Keep in mind your in good company as their are millions of us afibbers out there.
Rick8285, January 15, 2020 3:12pm EST
Thank you skk1949. I appreciate your words; it is definitely encouraging to know I am not alone. I think your comments about certain cardiologists is spot on. I can appreciate the fact that some cardiologists think AFib is a minor problem, but, I am very scared. Now, I am hyper-aware of anything happening with my blood pressure, heart rate, and heart rhythm. Sometimes I wonder if my anxiety is triggering AFib. I will follow-up on maybe getting some anti-anxiety meds for the short-term. As for Amiodarone, I decided to tell my doctor that i did not want to take it because of the side effects associated with that drug. The FDA black box warning for Amiodarone didn't help either. What I read scared me. So, at this juncture, if there are other drugs I can try, I want to go with those first. One thing I have learned from the wonderful group here is that I should go see an EP. Now, I am trying to figure out how to find a good EP here in Houston, TX. Since my AFib is paroxysmal, it seems that ablation success rates tend to be higher. So, I think I should go to an EP sooner than later. So much to take in!
rfedd, January 15, 2020 4:19pm EST
I am on a super low dose of Amiodarone. Doctor tells me at my dose level should not be a concern. The Magnesium and potassium supplements seem to also helping a lot. I always had low readings. Best of luck.
Rick8285, January 15, 2020 5:33pm EST
Thank you for your input. At this point of my AFib journey, I am freaking out about everything! I know the Amiodarone information did. It is good to know that it is always an option I can come back to. What Potassium and Magnesium supplements are you taking? I am taking prescribed Potassium Extended Release (10 MEQ 1xday). Also, I started taking 100mg (1xday) of High Absorption Magnesium.
rfedd, January 16, 2020 12:16am EST
100 of potassium, 300 magnesium. One per day.
Gene157, January 16, 2020 12:57am EST
One shurefire check for me for AF. My pulse pressure, the difference between diastolic and systolic, drops from 45 - 50 to 25 - 30 because heart is less efficient. Heart rate is up and my tail is dragging, even at rest. Most people never heard of pulse pressure, it is an important number.
And get your ejection fraction number, you want to know what shape your heart is in. Over 2 years mine dropped from 60-65% to 50% now. Less than 50 is heart failure. bummer.
Thumper2, January 16, 2020 8:32am EST
I have a "list" of general recommendations to add to the advice above.
Do make an appointment with an electrophysiologist (EP), and talk to him/her about going the route of ablations. But make sure this EP has a history of doing many and successful ablations. In a sense, your symptoms are "worthwhile" because they encourage you to get yourself educated on AFib. I had AFib with almost no symptoms for some years, but I became increasingly tired all the time because my heart was quietly remodeling itself in negative ways. Many here have been greatly helped by ablations; by the time I had them, they did me no good. I wish I'd had mine earlier.
Have you been tested for sleep apnea? It has a negative relation to AFib. If you go the ablation route, sleep apnea will lower your chances of the ablation being successful.
I take two 100 mg magnesium pills per day, brand is Doctor's Best, and it is chelated. OTC magnesium tends to be poorly absorbed in the body. As for potassium, one way of getting more of it is to drink Low Sodium V-8 juice -- the sodium has been replaced with potassium. It's healthy and tasty (if you like V-8 juice).
Please keep in touch with us! Let us know how things are going.
All the best, Thumper2 (Judy)
Canada, January 16, 2020 11:59am EST
Hello Lost and Confused,
I was diagnosed on the same day last year and felt just like you. I spent the day in the ER and meds didn't work all that day - until I ate a snack! (which only the cardiologist let me do) So my converting was not nearly as complicated as yours. Everyone is different and for me it's been important to learn to manage the episodes, which incapacitate me by shortness of breath. So I take my pill in pocket (propafenone) and stay in bed or seated until I'm in normal sinus rhythm (NSR). Or course this can be very inconvenient and can make planning difficult.
How do we know if we're in AF? I can feel the flutters and clusters that don't subside after a few minutes. Many people get smart watches. I haven't done that and my cardiologist doesn't believe they are reliable enough. I have a BP monitor that measures AF but that hasn't been adequate for me - my heart rate (HR) goes too high. What works for me is an oximeter (about $30) - the little device that clinicians clip to your finger to measure oxygen levels. It also shows the HR and AF is easy to monitor. I went to the ER a few times after diagnosis because I wasn't sure what was the right thing to do. It's definitely upsetting. Getting clear advice from your expert and getting familiar with your episodes helps. They can vary but I've learned how to get on top of mine early once they start.
I watch my potassium and mag levels.
AF is life altering but not life threatening. Be attentive but not obsessive.
I hope this helps.
Rick8285, January 16, 2020 12:12pm EST
Thank you for you advice. Following up with an EP is on top of my to-do list. This is one EP I am considering here in the Houston, TX area.
One thing I wonder about is how do you go about assessing the history of an electrophysiologist? Do you ask the EP her/himself about their history? How do you determine whether or not a particular EP is good or not?
Rick8285, January 16, 2020 1:11pm EST
Thank you for your encouragment. Right now, I am trying to figure out what Afib feels like for me. That is the most frustrating thing. The cardiologist mentioned (but he was not explicit about it) that I had premature heart beats (PVCs & PACs). So, sometimes I feel the skipping beats in my ryhthm, but that doesn't mean I am in AFib. I purchased a KardiaMobile EKG and I have been doing regular EKGs for the past couple of weeks. The good news is that I have been in NSR for the majority of the time. When I feel the "thumping" in my chest, I do an EKG. For the most part, I get a "Normal" reading. I have gotten two "Possible AF" episodes each lasting approximately a few hours, based on the elapsed time between EKGs. Again, I can't be certain I am in AFib because it seems the KardiaMobile has some issues reading premature heart beats (https://theskepticalcardiologist.com/2017/08/17/alivecor-kardia-has-a-premature-beat-problem-how-pvcs-and-pacs-confuse-the-mobile-ecg-device/). On one occassion, I used Kardia's premium service, and, supposedly a board certified cardiologist reviewed my trace (for a $20 fee). My review came back as "AFIB," but it was prominently flagged as "NEEDS REVIEW." So, I guess my cardiologist would need to confirm if I was indeed in AFIB. I guess the positive side of things is that spending the majority of my time in NSR. Thanks to everyone for your kindness. I feel so much better knowing I am not alone, and I appreciate everyone's input.