New Member

[SJP123]

Hello everyone. I just joined and was asked to introduce myself so I am simply pasting the bio I wrote when joining. It pretty much describes my story. I will read more of the existing posts before I start asking a lot of questions. I look forward to being part of the group!

Bio:

I began having episodes of tachycardia in 1986 at age 16. Attacks were infrequent and were not diagnosed as a heart arrhythmia until around 2000. At that time I was told my tachycardia was AVNRT. I took various medications (primarily Metoprolol) until complaining of severe fatigue after which I was prescribed Verapamil. I had two failed ablations followed by a “successful” ablation which eliminated the excessory pathway causing the tachycardia (averaged 165 bpm). Four months after the ablation, arrhythmias began occurring again which were diagnosed as atrial flutter and PACs. I therefore started Varapamil again, to which Flecainide was added when symptoms increased in frequency and duration.

I continued taking verapamil(120 mg per day) and Flecainide (150 mg 2x per day (300mg daily) for several years but continued having irregular heart rhythm periodically which would self convert (these were frequent episodes lasting minutes to hours in duration). After several years of continued treatment my frequency and duration of arrhythmias again increased and I was diagnosed with Afib based on Kardia readings I provided to my cardiologist.

I am now awaiting another ablation to treat the afib. I have been prescribed Amiodarone until the ablation is completed but have not yet started this medication. I am also now taking Eliquis to prevent blood clots since the afib is not controlled.

On a personal note, I have lived with some form of arrhythmia for almost 40 years and couldn’t convince anyone, including the doctors, that this was an issue with my heart for the first 10+ years. I heard it all… anxiety, acid reflux, etc. etc. Thankfully my persistence and an event monitor finally captured the irregularity. Despite all of this I’ve been able to have a somewhat normal life, a family and career, but wish I didn’t have to constantly feel sick and/or fatigued from my condition and all the medications.

I’ve had thousands of episodes but just push through them. I’ve travelled extensively for work and pleasure and simply do as much as possible while ignoring the symptoms when I can. This has become much more difficult, however, as I’ve gotten older (now 54 years old) and I’m really hoping the upcoming ablation will finally allow me to be free of symptoms and the anti-arrhythmic drugs.

I’m happy to join the group and am interested to hear others’ stories. I chose to join now to hear about experiences taking Amiodarone, which I am dreading.

Steve

[meadfoot]

Welcome to the forum. What a story you have and it will be helpful to many members old and new who are struggling with arrhythmias. How good that through it all and there must have been some rough moments, that you have had a good life, career and tavel. That will inspire many who have been hit with this condition and fear their life being curtailed.

The good old ‘anxiety’ bandwagon favoured by some medics as a cause of our ills is so common that its staggering. So good you persevered to get to the truth of the matter. I accept anxiety plays its part for many of us as this condition can be scary.

I cant help on the amiodarone front but many forum members have experience so you will get answers shortly. Good luck and so pleased you joined the forum. Its my tenth anniversay here on the forum next month and its been so helpful to me I can't praise it and its members enough. Hope all goes well for you.

[CDreamer]

Hi and welcome!

My goodness you have done really well, despite your difficulties and I’m so sorry that you have not had any success in finding a treatment that worked for you. Most people here will not have had AF for nearly as long.

I developed AF in my mid 50’s, had 2 ablations 1st of which made things worse for me and second of which prevented further AF episodes for about 3 years. AF seems to run in my family. After the 2nd ablation I developed an autoimmune condition which prevented me from taking any of the heart medications so I had to stop cold turkey which wasn’t pleasant but I began to feel better as the meds cleared my system - tbh the meds made me feel as bad as the AF! I had AF with AFl & Tachycardia, Dysautomnia, Sleep Apnea and Autoimmune. The Sleep Apnea treated with CPAP - improved my sleep = felt somewhat better. Autoimmune treated which took until 2017 to start to stabilise helped the Dysautomnia so no more syncope etc and BP crashing and crazy high heart rate.

3 years on after the 2nd ablation AF returned and I so started about 3 years of various types of symptoms, ectopics, I started to show some signs of long QT and had tachycardia pretty much most of the time. I was then offered a pacemaker and my EP fought very hard to get me a Resynchronisation Pacemaker which was implanted in 2018 - in preparation for AV node ablation however the PM worked so well for me that I cancelled the AV node ablation and have continually improved ever since.

Amiodarone prior to and following ablation is going to give you your best chance but I can understand your reservations and there are quite a few people on this forum who have had bad experiences and there are others who have had very good experiences, including my husband for whom Amiodarone worked without ablation. He is still taking a low maintenance dose 4 years on which just about keeps the AF at bay although he has had a few break through episodes this week. He thankfully has suffered no serious ill effects although in the last few months he has shown Thyroid dysfunction so no taking Thyroxine to compensate. One needs to take a balanced view of the benefit: risk. Taken short term, you would be unlucky to have long term damage and it will give you a good chance to put these pesky arrythmias behind you.

This is a diverse community with much experience from kind and supportive people so again, Welcome.

Best wishes CD

[Finvola]

Welcome to the forum, Steve - you certainly have had a rough time with arrythmias and treatments - but, you have a wonderful attitude which, I think, is a good bit of the battle in coping.

I cannot help with Amiodarone as I have taken 200mg Flecainide for the past 9 years with success, fortunately. My first visit from arrythmias was when I was 15 in 1959 - tachycardia diagnosed as teenage over-enthusiasm, then hyperactive thyroid. Then relative peace for 45 years before AF started.

You will find this forum so helpful as there is always someone who can help or share their experiences with you - it certainly brought me out of a very bad place at first diagnosis.

Hopefully, your ablation will be a success - very best wishes.

[jeanjeannie50]

Hi Steve and welcome to the forum. Some good responses to you above.

Amiodarone - I detest the drug. It damaged my thyroid and I'll now have to take medication to rectify that for life. Like Russian Roulette some get on fine with it, while others don't. I knew someone who took it for about 8 years, he was totally unaware and didn't read any of the information that goes with the pills about it's possible side effects and didn't even stay out of the sun as is advised. For him the drug had no side effects and he actually died in old age with pneumonia.

Jean

[Sheepbreeder]

Your backstory sounds very similar in many aspects. After 4 ablations and 3 cardioversions over 16 years and trying most of the available drugs I gave Amiodarone a go for 18 months which resulted in calcium deposits in eyes and lung congestion. On to Dronedarone which has worked well for rate control but not always well for rhythm control. Had a PM implant last week and will go back for the AV node ablation in late March. Although 20+ years older than you I'm very busy and physically active in my farming and engineering businesses.