Amiodarone causing constant dizziness?

Ameoderone

by AgentX86 - 2019-12-24 11:11:15

When you say "shock", I assume you mean from your ICD.  Do you know what triggered the defibrillator?  It would be good if you filled out your profile a bit more.  Why was the ICD implanted, etc.

Back to Ameoderone... This is the most effective antiarrhytmic in the arsenal.  It's also the most dangerous (they're all toxic, roughly in proportion to their effectiveness) of the group.  Some of the drug sites don't list side effects you may experience, rather these are the side effects, some of which you will see. If you're on it long enough, well, it's nasty stuff.  I've been on it three times, each for six months.  My cardiologist, and then EP, said that they don't like putting younger people on it because they will see bad side effects and it will affect their lives more (they're going to live longer).  ...and I was over twice your age. They would only keep me on it for six months at a time. My cardiologist said that if I were 75 or 80, he wouldn't be as worried about it.

If you look up the drug, one of the most common side effects is dizzyness (etc.).  Ameoderone is also a beta blocker, so will lower heart rate and blood pressure. The first time I was on it was immediately after my CABG/Maze because the Maze failed and left me in permanent flutter. I was also taking 250mg of metoprolol (a very high dose) because the lower heart rate and BP was desirable.

Did your EP tell you how long he intends to leave you on ameo?  If the answer is "more than a few months", he'd better have a really good reason or I'd be looking for a new EP. At 30 years old, it's not good stuff. Note that ameo will stay in your body up to six months, so you may not see an immediate change if/when you stop taking it.

If you're ever in a really good mood, do a web search on ameoderone.  It'll fix that good mood fast.

Amiodarone

by Stan Da Man - 2019-12-24 16:48:23

The shock from my ICD was triggered by my heart rocketing up to 215bpm in two seconds and then went straight back down to 55bpm. It couldn't catch up with itself so my blood pressure dropped, I fainted and received the shock.

My ICD was installed due to congenital heart disease and many other things that I've had since birth. My condition has been pretty good up until age of 29 when I had the ICD put in due to my condition worsening. This year, now 30, is the first time I've blacked out from anything and after I received a shock, I was immediately put on amiodarone. 

Since I've been put on it, I've been feeling like I've described in my first post. I've told several consultants (NHS) that I believe this drug is what's causing me to feel this way but they're adamant I stay on it and see if I can improve. They've basically said after this that there wouldn't be too many options left before transplant is considered. 
 

Ameoderone

by AgentX86 - 2019-12-24 19:50:49

Well, ameo is the strongest antiarrhythmic there is but it comes at a high cost to the rest of the body.  The third ~six month course I had left me hyperthyroid.  Fortunately it corrected itself in a couple of years.  As I said, it can affect about any (and all) organs and IIRC it's stored in body fat so has a very long half life.  If you have a reaction to ameo, stopping it immediately doesn't do much.  Nasty stuff but if there is no choice,,,

Alternative?

by Stan Da Man - 2019-12-24 19:58:15

What happened when they finally took you off it? Did you go to other meds? 

Dofetilide

by marylandpm - 2019-12-24 20:24:19

I had some very bad reactions to Multaq and am now on Dofetilide. Dofetilide put a stop to my Afib / flutter.  I am 100% paced. 

Dofetilide

by Stan Da Man - 2019-12-24 20:32:42

Never heard of that drug, I will have to look into it. I'm the complete opposite of you in that I'm paced 1% of the time! 

Alternative?

by AgentX86 - 2019-12-24 22:23:36

There are several.  As I saiid earlier, they're all toxic in roughly the same order as they are effetive.  Ameo is the king of them, though. Hearts and spades.

I had a DCCV that was successful for seven years.  Then I had a couple of bouts of AF, then a CABG.  Since I had a history of AF, my cardiologist had them do a Maze (and LAA closure) at the same time. That was five years ago (11/'14).  The Maze failed and put me in permanent flutter. Immediately after that was my introduction to ameo.   The ameo worked well but my cardiologist didn't want to risk the toxicity.  Shortly after I came off it, I'd go back into flutter.  Rinse repeat.  Since I was highly symptomatic I had an ablation (left side because the cause was the Maze) 11/'16, followed by ameo, another ablation 7/'17, Sotalol, and another ablation 1/18 (also failed).  I then had an AV ablation and pacemaker implanted 2/'18.

The sotalol damaged my SI node so I needed a pacemaker anyway, so the AV ablation wasn't a huge step.  Other than becoming dependent it wasn't a step at all and avoided antiarrhythmics altogether.

Drug Interaction ?

by IAN MC - 2019-12-26 08:15:31

Stan, I see that you are taking amiodarone together with a beta blocker ( carvedilol ).

Drug interactions between  the two can often occur, symptoms  being dizzyness, fainting and headaches.   This is quite possibly the cause of your problems and you need to float the idea with your doctor.

In my experience, doctors have a VERY limited knowledge of drug interactions. They happily practise poly-pharmacy without considering how drugs interact  with each other.  So when you suggest it your Dr will probably dive into his computer before acknowledging that you may be right.  

If this is the case you would need to replace either the beta blocker or the amiodarone with a different class of drug.

Best of luck

Ian

Drug interaction

by AgentX86 - 2019-12-26 11:18:35

Ian is right, though ameo alone can cause these symptoms.  In the US, anyway, your pharmacist is a good place to ask about drug interactions.  Many do an automatic check of interactions before they fill a prescription and warn of any possible interactions.  That's really their job. 

My insurance company does the same, though they're a dollar and a day (plus a few brain cells) short. They keep suggesting that I take a drug that they should know that I'm allergic to and suggest that my wife take a drug she's already taking.  More than a few defective brain cells there.

Amiodarone

by IPGENG12 - 2019-12-26 18:26:16

I'll echo the other respondents about Amiodarone-  it's very effective but toxic.  I was on it for two years as a last attempt to control SVT's/ AFIB etc...Then,  it built up in my Thyroid and I went hyperthyroid.  At the same time it started attacking my eye-sight- I lost the upper right visual field.  Go figure.  I also got tremors and the dizziness.  This all led to me going the pace and ablate route to control my fast atrial rhythms getting to my ventricles.  I went off the amiodarone as soon as I got the intial thyroid diagnosis.  Luckily, my eyes and thyroid have fully recovered.  

I'd talk to your doctor's about the other options again.  Amiodarone is not something you should be on for long.

Side-Effects in perspective

by IAN MC - 2019-12-27 04:39:23

Yes, amiodarone can have nasty side-effects , but only in a  minority of patients. We must remember that most people take  it without any problems.

Published work indicates that after 2 years around 11 % of people have experienced side-effects.... that means 89 % haven't !

This site does give undue emphasis to bad news whether it relates to pacemakers or drugs !  People who are perfectly happy on amiodarone ( or with their pacemakers ) tend not to post.

Ian

Side effects in perspective

by AgentX86 - 2019-12-27 11:38:52

Perhaps you think 11% having side effects within two years is a small number but I doubt you'll find another drug with an incidence of serious side effects as high as ameoderone.  Also remember that, because is the drug of last resort (because of its side effects), ameoderone is a drug that's used for the rest of one's life.  Two years isn't a long time. Sure, sometimes it's used for a short period to bridge to or after a more permanent solution but used in long term it will have side effects (or you'll die first). It also can't be stopped immediately if side effects appear (it remains in your system for months). Nasty stuff.

Docs never listen!

by Stan Da Man - 2020-01-04 18:42:21

I have contacted my doctor on three separate occasions since being put on Amiodarone and they have cut out everything bar the Carvedilol which has been cut to 6.25mg twice a day. I'm taking Amiodarone 200mg once a day. No other meds. I still have the same symptoms and nothing has changed. I'm due back for more testing in two weeks time and am very nervous. My blood work was done start of December and my thyroid was already above normal levels though not high high according to my doctor. I've only been on Amiodarone six weeks though!

TBH the last few weeks have been extremely difficult for me. The combination of being put on this dangerous medication with these side effects, my blood work not being great, still turning purple when I bend over and feeling tired all the time has given me borderline depression.