Amiodarone

[Sirenet]

Ok, I am starting to lose it. I have done the best I can to channel information regarding the deteriation of my health. I have been through quite a bit in the past, but the past few months have seemed surreal. Someone please awaken me and tell me that this has truly been a nightmare.
  I had always taken care of myself. Ran, weekly workout routine for years (not a builder, just tone). Relatively low cholesterol  (170-ish), BP 110/70, HR 60, 6'3, 190 lbs ( at one time body fat under 10%). After a serious MVA had long rehab and relearn limitations. My body took a hell of a beating.
  As of Dec 2007, I was helping my brother renovate his new home. (everything from framing, sheetrocking etc, - very strenuous work). Looking back, I realize that I was blaming many symptoms on past injuries and just trying to work through pain/etc, which I had learned for yrs. Sensations of passing out I blamed on severe pain (neck) etc.
  I go to ER with abdominal pain. MY HELL THUS BEGAN.....
  After learning that I had a bad gall bladder, the hits just kept coming. Dr informs me that I have a bad heart. Each test and new info was worse, it seemed than the last. Each dx was prefaced with severe... ( severely enlarged heart, severe heart failure, severe hypokiness, severly abnormal arrythmias.) Told that I have CHF, DCM, very enlarged LV, very low EF... many secondaries associated with such ( MVR, TVR, S3,S4, ). Told I had to have ICD, which I needed more time due to being overwhelmed.
  11-12 days in hosp, included; 6 runs of V-tach, BP 70/30, HR from 38- 212, EF anywhere from 15-30 (cath, Echo, stress), depending on test. Nothing to fix, as cath revealed clean coronaries.
   Return home with regimine of drugs which knock me on my Butt. Low BP, HR, no energy, concentration, etc...
  My continued tests upon returning home; holter reveals 6,000 Pvcs, 289 couplets. Event monitor stopped 10 days into planned 30 due to daily V-tachs and EP Dr said could no longer delay ICD. It was needed for low EF, Dilated Cardiomyopathy AND deadly V-Tach. Went in for pre-op next day.
  Icd implanted last thurs and Dr adds amiodarone to my list of meds. THe toxicity of this drug on the body and  organs is devistating. I would have to be on my death bed to agree to these side effects and potential for permanent damage. I try to go for a walk with my wife on sat and last FIVE houses, and have to go back home.
   How in the world is it possible for my health to have taken a nose-dive so quickly. Within 4 months I go from being productive to being reduced to being predominantly bedridden. I feel like @%$* (crud). My ICD was 'low voltage' pacing for 20 mins this afternoon. After talk with EP,  I'm advised that if I refuse to take amiodarone, then I have to go back in hosp for 2-3 days to go on sotalol.
   I have done the best I can to deal with this devistation, but how in the world does one's body fall apart overnight? I've had enough.
  Does anyone have any personal experience with amiodarone? From what I have read it is a last resort for deadly arrythmias. Thanks for any info...

[ddavey]

my daughter was put on digoxin because her dr out of the university of mich told us that the side effects from amiodarone would be very problematic for her     she is 23... she has done very well on digoxin, she has dilated cardiomyopathy with very frequent pac's and svt's     she is also taking coreg, vasotec and inspra....   hope this little bit helps

[ddavey]

also    the addition of digoxin has been the only thing that has improved her ef  (32% at diagnosis 3 yrs ago to 42% now)    she also underwent an unsuccessful ablation

[maggiemag]

Gee, I am sorry you have had to go through all this.  Except for the sheetrocking, I have been through much of what you have been through.  ;-) I went for an ICD implant, but they were unable to implant (don't ask, please).  I was put on Amiodarone and was on it for about 2 and a half years.  The ONLY side effect I had for the first two years was severe reflux, and I mean severe.  My sleep was severely disrupted, BUT the symptoms went away with treatment with Protonix.  I don't think this drug is what limited your walk.  The beta blocker and ACE that you are probably on will limit you, but it WILL get better.  You will get more used to these drugs.  I did develop quite a bradycardia with the Coreg plus Dig and the Amio, so my Coreg was lowered after about 2 years.  Then I did develop prolonged Q-T from the Amio and was taken off.  It did do its job while I was on it.  It is a good drug for certain cases, and not everyone has side effects, really!  You need to watch your Dig levels and INR also if you are on both Coumadin and Amio.  You need to get pulmonary function tests every 6 months.  You need to get your thyroid levels tested every 6 months.  ALL of these drugs can have ugly side effects, that just is a fact.

I hate to mention one other thing, but I did get severe hyPERthyroidism right after being taken off the drug, and it was from the drug.  But my thyroid has been fine since.

I would suggest, and I am not a doctor and you are the only one who can make the decision, but I would go on it if I were you (even after all I went through) til they get the rest of  your treatment program stabilized.  Sometimes the drugs need a little tweaking til the right combo for you is found.  You do not want to get zapped from your ICD for VT.  After your heart has been on these drugs a while, you can expect some remodeling and your heart size is likely to go down some.  Mine did.  That means your electrical system will be less likely to be out of whack.  You will have less tendency towards lethal arrhythmias.  Maybe then you could switch to another drug with less potential serious side effects.

It hasn't really been very long since diagnosis for you.  A lot can happen in a year or so.  I went from 15% gradually to 55% in about 3 years.  Maybe you are expecting too much now and need to learn how to pace yourself more efficiently?  I know, it's easier said than done.  You can get better and having a positive attitude can help.

[pusher]

I was on Amiodarone for 2.5 years for extended runs of VT.  I have an ICD as well and am thankful for it.  It has saved my life more than once.  The Amiodarone is a powerful anti-arrythmic drug.  It almost always works  and it did for me too.  Sure there were side effects but nothing I couldn't manage.  I ended up wearing long sleeve denim shirts all the time along with a hat as the sun and certain types of lighting would give me a pretty good burn.  I ended up with a good tan all the time.  Like Maggiemag said you have to have some tests done a couple of times a year to make sure things are okay.  I didn't have too many problems while on it.  In the time I used it I didn't have any sustained runs of VT which was a good thing.

I don't know if it is coincidense or not, but it seems that generally they don't keep you on it for more than a couple of years.  I have since been put on Digoxin and additional Toprol since but the VT and other arrythmias came back after about 4 months of being off Amiodarone.

Amiodarone has a long half-life so it takes quite awhile to get your system loaded and when taken off it, it takes several months before it is out of your system.  I understand how everything can become over-whelming and that burden by itself can be depressing.  Maybe you need to discuss all this with your doctor and come to some agreement as to how to include some treatment for the anxiousness your are feeling.

Good luck to you.

[Sirenet]

Sincere thanks to everyone and your responses. Your insight and experience is highly valued here. I really dislike complaining, but I haven't had much time to mentally prepare for all of this and the incredibly quick onset has left me feeling as though I am lying under a train....
   Thanks again, Steve