Living with Atrial Fibrillation: What are Your Experiences?

I have had A-Fib for about 10 years. My heart beat is usually between 104/64 and 160/80. My resperation 60-126. I had a amputation and my heart went crazy. Was up to 166. My cardiologist is sending me to a specialist to see if I can qualify for the walkman. Does anyone know anything about it?

I was diagnosed with Lown-Ganong-Levine syndrome (LGL) when I was 31 years of age and was given Inderal until Corgard (nadalol) came on the market and have been taking the later for at least 35 years which is a beta blocker. I am now 81 years of age and last spring the Ep wanted to do a cardioversion but after reading several accounts of patients having had that done, I declined. So far so good and most of the time I feel great although there may come a time when I have to do something. Husband recently had a heart attack and has always been very healthy and I drive him 60 mile round trip to cardio-therapy 3 times weekly. I am not trying to dissuade anyone from following doctors advice but just saying do some "homework", research before agreeing to treatments that you don't understand. There are times in an emergency that one must bite the bullet and do something. Best of health to all.

Me ha sido muy útil leer tu comentario. Tuve un episodio de fibrilación auricular hace 2 años con latidos que llegaron a los 180. No sentí dolor en absoluto pero sentí que me moría y pedí que me llevasen a urgencias. Me internaron me estabilizaron Y por supuesto me recetaron anticoagulante 20 mg ,bisoplolol y flecanida.(Creo que esos son los nombres de los medicamentos) Tengo control muy seguido y nunca he vuelto a tener ningún síntoma. A los dos días de haber tenido esos síntomas y ya estando en mi casa, me di cuenta que no tenía ni olfato ni gusto.. el hisopado demostró que tenía covid. Y tanto al médico como a mí nos quedó la duda si la taquicardia había sido un síntoma del covid. Cosa que nunca se pudo demostrar. Pero mi salud está perfecta Y sigo con el tratamiento y haciéndome estudios y controles cada 4 meses. El dejar la medicación es una tentación ,a la que ni el médico ni yo cedemos.

Thanks Glen: For others..I meant to state echocardiogram..

I will have a echocardiogram in a couple of weeks. This is done once a year and they have all been roughly the same each year.
If there are any major change then I would have to think about ablation but so far not needed.
They will also echo my legs as I have some bad veins with a little warmth and mild discomfort along with swelling.
I take a water pill "Torsimide" but only on and off. Usually they help to bring down the swelling.
My afib while always there is still mild

Glen

Doctors have less liability, I believe, if they follow protocols for medication. In other words, less legal risk for them for prescribing vs not prescribing. We have a legal right to decline. I have declined heart meds and anticoagulants for 10 years. I get along with my MD's because I discuss it with them. So far so good but surely medications are in my future- pill in the pocket for now.

Yup, and I don't know if things would have turned out differently, but he prescribed the 400 mg of Amiodarone and 250mg of Dilitiazem in the hospital. So I had no idea I was taking it and after they released me, my family followed the discharge instructions and the meds were a part of my regiment. This went on for 11 months until I was so debilitated, I did not have any quality of life. When the cardiologist in the hospital had given an appt for me to my sister, off we went a week after my discharge. He performed a nuclear test (clear) another echocardiogram (fine) a week of monitoring (fine) then 1 day of monitoring and he said "you have Bradycardia. When I called for a confirm the next appt. I asked if he had any additional information and was told my whomever answered the phone "oh, he wants to give you a pacemaker". I think I swore at her and that was the last I saw of him and his staff. But, he sent me to an electrophysiologist for follow-up so I went. He was told by my primary doctor to stop the drugs, which he did, but then prescribed Flacinide. Since I finally wised up and realized that the Amiodarone has a 1/2 life of at least 125 days so both drugs were in my system at the same time. I can't even describe what it was like and the damage is done and now my thyroid is no longer working properly. Of course, the answer is another drug being introduced to take care of the thyroid problem from the former medications and now side effects have started again. Different side effects, but still just another medication, like most that are given by doctors to patients, that create additional health problems or worsen what you had in the first place. And the answer is to just add another medication to stop the damage from the first medication, and on and on. The bottom line is that you're never the same but you can pass along your experience and hope it helps someone else looking for answers.

I agree 1000 percent JOmack. I learned what you are saying many years ago. The only thing I would edit is, you said for the doc to discuss the side effects. Most doctors do not want to be questioned, and they take the drug salesmen's recommendations. You can ask him to tell you, but YOU need to CONFIRM it YOURSEF. Very simple. Google - What are the side effects of bla bla med. Don't waste your time or money until you do. And many people like me, who rarely take meds (none for me) can have severe reactions. A doctor gave me a prescription for a tiny pill, and I asked him if it would cause a problem, and he said NO, it is tiny. Well, I tool ONE HALF of the TINY pill and felt like was in a space ship going to the moon. Scared me. THEN a cx-worker told me the same happened to him, but didn't tell me as did not want to scare me.

I have a friend whose doc told her to lose weight and then gave her a med that made it impossible. Another doc told her the med makes you gain weight. She had been eating celery and lettuce etc and could not lose.

One doctor gave me a med and told me it was natural. After feeling weird, I googled and it was nothing but chemicals. He lied.

That is just a small percentage of my doctor stories. I could write a book. Everyone needs to take responsibility for their diet, their health habits, do not believe all you are told. Listen to your body's reactions to anything.

Thanks so much for this important advice!

I had Afib while sleeping when I was in the hospital after a 20' fall, cracked my head open and unknown until later, had bleeding ulcers resulting in a loss of 1/2 of my hemoglobin. With only one Afib event the cardiologist gave me 400 mg of Amiodarone and 250 mg. of Dilitazem. If you are prescribed Amiodarone talk to you doctor at length. The side effects are pretty bad and after 11 months the drug was discontinued since my levels of thyroid, liver and heart were more and more elevated after every blood test. After 11 months the drugs were discontinued, my liver and heart levels were down but my thyroid was damaged. In January 2024 I was prescribed levothyroxine since my thyroid would not recover. A side effect of the Amiodarone caused hypothyroidism which is one of the many side effects. So, just advice from my own experience. Every drug your doctor prescribes make him discuss every detail with you so you have the information. I did not until recently, when I saw my blood tests through a portal that was sent to me by the diagnostic company. It shocked me to read the results as my organ levels climbed and although, it was too late, I learned now that doctors overprescribe, don't follow-up in a timely fashion, do not discuss the issues you may be experiencing and dismiss your concerns. I had advocates for me during this time frame, but one thing we all did that went found was totally wrong. We accepted the doctors decisions and not one of us questioned the mediations. I mean, why would we? We thought he would do "no harm" and trusted him as we do all the doctors that he knows what he's doing so to question the toxicity and side effects of the mediations prescribed never entered our minds.