Amiodarone experiences

I have had a ICD/Pacemaker since 2006 (on my third one). I have had VTACH, PVCs, PACs, AFIB, VFIB during those years.

Back in 2016 the wires in my pacemaker were developing serious impedience which was affecting battery life. They decided to try turning off the pacing. Within a week on one day I had 5 shocks (first time ever) within 24 hours. I was put on Amiodarone drip in hospital and pills afterward. Amiodarone is a great medication and worked for me bringing my heart back into rympthm.

However like your dad I had read about Amiodarone side affects and toxicity to body. With discussions with my EP he agreed to ween me off of it slowly over a 6 month period. I still have to have yearly eye exams to check if the amiodarone caused any damage to eyes which is one of the side affects.

The dose I was on was high and I have read on MCC many on Amiodarone on much lower dosage for long periods of time.

Since we are not medical professionals ask your dad or you to talk to your cardiologist about the side affects of amiodarone versus the benefits of it for your dad. Your doctors know the seriousness of your dads VTACH and the presciption dosage level.

If you and your dad are in doubt you can always get a second opinion from outstanding medical facilities like Mayo, Cleveland Clinic, John Hopkins and most of the time it can be done by submitting medical information to the second opinion facility. I did this with UFHPTI to get second opinion from diagnosis from Mayo and wanted second opinion.
Good luck but please talk to his doctors about the risks and benefits of amiodarone and if still in doubt suggest you consider a second opinion on treatment of your dad's VTACH.

Thank you. I have had care at Mayos and they are wonderful.

I took amiodarone for congestive heart failure for six years. I quit two years ago and never looked back as I felt terrible the entire time I was taking it. I quit as low blood pressure is more of a problem now, and I wanted to feel better. And I do.

I am 77 years old and have been on Amiodarone 300 MG for 2 plus weeks. My electrophysiologist had me to go into the local ER for a Cardioversion, My 5th I believe, to reset my heartrate and so far, so good. Pulse is in the hi 50's or low 60's. My blood pressure is a little low, right around 108/70. If the pulse and blood pressure remain constant, I hope that I can get off some of the heart meds I'm on; Amiodarone 300 mg, Metoprolol Tartrate 150 mg twice daily, and Diltiazem LA 360 mg, Diltiazem LA 5 mg twice daily. My heart has been declining in performance, with the pumping of blood had decreased from 55% ejection rate down to 30%. No side effect from the Amiodarone so far. The low blood pressure is responsable for some dizziness that I am experencing but nothing too serious.

@dandl48
I am not a medical professional but my electrophysiologist (EP) advised me way back when my EF was at 30 that 30 was the number they recommend getting a ICD.

Your medication can affect your pulse rate. Mine does. I am on Entresto, Carvididol, and Mexililtine (spell) as well as another one but not sure of spelling eplioterene.

My EP put in my ICD and also put in pacemaker back in 2006. I am on my 3rd device. The pacemaker has allowed my heart to beat regularly at 70 BPM. We experiemented with pulse rate pacing to see what was best to lower my PVCs and my exercise routines.

Your blood pressure is a little low but better to be a little low than high.

My EF was going down and down until I was put on Entresto and Carvididol. I had gone down to 25% EF. But with medications and my ICD/Pacemaker it has remained stable at 25% for over a decade.

My EP and HF doctor told me my body has compensated very well with less blood flow. They say on reason is I have always been active exerciser and I still am. I exercise 6 days a week for 1-2 hours. I love doing high fitness water aerobics, and I also long distant bike riding, and swim twice a week for a mile.

With my medications and exercise I think I have kept my heart from getting any worse.

I too have occasional dizziness if stand up to quickly. I have learned to do a small dance with my feet prior to standing up. I just did a 20 mile bike ride this morning and other than a sore but had a great time.

When I first went into AFib, my cardiologist put me on 400 mg of Amiodarone. He never mentioned risks. Like William66, I felt terrible. I was constantly nauseous and was short of breath. I found out that amiodarone was toxic to my lungs, and I now have pulmonary fibrosis due to it. In addition, it brought my heart rate down into the 30's, and I passed out. Obviously, I discontinued the Amiodarone, but it stays in the system for months. I then was referred to an electrophysiologist and was given a pacemaker. After the pacemaker I have gone into AFib 3 times. I am having a problem with medications controlling my AFib. When my EP suggested Amiodarone, he quickly learned that there is NO WAY I would take that drug again! I know it works well for some people, but my advice is to get constantly monitored for adverse reactions - something my cardiologist did not do.

@bettycll
Not a medical person at all. I have had a ICD/Pacemaker since 2006.

It is my information that a pacemaker paces your LV not your atriums. When you get AFIB it is spearte form LV pacing. AFIB usually is treated with medications. The biggest riks per my EP from AFIB is strokes.

I had 5 shocks in a 24 hour period back in 2016. I was put on Amiodarone drip in hospital and then pills. This was done by hospital not my treating EP. After I reserached the amiodarone I did not want to be on it just like you because of the toxicity. He agreed but took several months to wean me off safely.

Years later I was put on a drug called Mexiline (spell) to help with PVCs and tachyacardia. It is not very toxic but because it does not stay in body you have to take every 8 hours. It cut my PVCs in half and no very rare tachyacardia.

I agree with you. Every doctor that puts a patient on amiodarone should go over the toxicity and risk. It should be based on benefit of this drug versus it side affects. It is a great and affective medication to bring heart into rympthm.

Until this year (since 2016) I had to have yearly eye checks because I had been on amidarone. The eye doctor after almost 10 years since I came off said he found no evidence of amiodarone damge to my eyes and I did not need to have checked now after 10 years.

Amilodarone is very effective but medical professionals need to be honest and informative over the side affects and toxicity of the medication.

Completely agree, JC76. Medical professionals definitely need to be honest and informative about any medication prescribed. I complained to several doctors about my shortness of breath - I was told it was probably from the AFib. Even the first pulmonologist I saw did not mention the amiodarone! The second pulmonologist called it a "poison pill" and determined my problem immediately and treated me with steroids. My cardiologist SHOULD have picked up on that! Glad your eyes do not have any damage.
I do not have an ICD - just a pacemaker (4 years now). After reading about Mexiletine in MCC, I asked my EP about it last week. He said I am not a candidate with my AFib. I have had 2 cardioversions (last one a few weeks ago). They had me on Flecainide after my previous cardioversion - but I went back into AFib a few months later. I am now on Propafenone 3 times a day to (hopefully) prevent me from going back into AFib. Sotalol converted me once, but I cannot take that now because of my CKD. As you see, I have multiple issues! I expect that an ablation is in my future! Thank you for sharing. It helps to communicate with others who have similar issues.

Yikes! Husband just had 4hr electrophysiology procedure to ablate Afibs. EP stopped Diltiazm ER and changed to Amiodarone 200 mg. Now concerned after reading about its possible side effects. I’m hoping 3 weeks usage prior to post op visit will not be detrimental,

Amu45sin
Was on 200 mg with no noticable side effects for two months.
Had an an Ablation a week ago, and now am off amiodorone.
Not good to stay on for very long.