Skip to content


Alan

A Survivor’s Story

I am a 62 year old father and grandfather, resident in Northern Ireland, who was diagnosed with Hypertropic Cardiomyapathy 15 years ago. I have always been an active individual, taking part in many sports and being a self confessed workaholic in my family run business. I never allowed the news of this heart defect to curtail my life and I remained active and continued to travel all over the world in relation to my volunteer membership of a USA based peace and humanitarian organisation.

In October of 2008 an annual holter monitor test picked up a short burst of VT heart beats and my cardiologist told me that my beta blocker wasn’t enough to protect me and that I was now in a high risk category. He told me that he wanted me to take a drug called amiodarone. The only thing that I was told was to cover myself in the sun. None of the side effects were mentioned and I wasn’t’ even warned about the danger of drinking something as basic as a glass of grapefruit juice.

By March 2009 I started to notice my toes going numb and I flagged this up to the medical people but the response was shrugged shoulders. In July 2009 I noticed a strange sensation when I was walking and it took me a few days to figure out that this was caused by numbness in my legs up to my knee’s. I had also noticed that I was slurring the odd word, and no I don’t drink alcohol .lol.

I reported these symptoms to the hospital in August 2009 and they agreed to reduce the dosage from 200 to 100 mg per day. I had also had an irritating dry cough but they told me that this wasn’t related to the drug. At that time I knew nothing about the devastating lung problems the drug could cause. I had to insist on a chest x-ray which was clear and thankfully my cough cleared up. They wanted to place me on a beta blocker as well as amiodarone but I just couldn’t get a dose or a brand that didn’t knock me for six. At the beginning of November 2009 I picked up a serious food poisoning bug that caused me serious weight loss over a short period and kept me in bed until nearly Christmas.

By January 2010 I was very weak but went back to work on a part time basis and attended for a routine hospital appointment in mid January. My legs were now totally numb up to my knee’s and my arms were starting to hurt. I was still pretty fragile from the food poisoning illness. They insisted that I restart the beta blocker and by February I was completely devoid of energy and I was getting really short of breath. This led to the start of a series of panic attacks as I thought that every time I exerted myself I was going to drop down dead.

No one was listening to me and I was being told that it might all be in my head! I had another twenty four hour heart monitor test done and had no feed back about it. By now I was reaching the end of my tether and phoned the hospital and they said they would review my file. They phoned back to tell me to stop the beta blocker immediately as it had slowed my heart down to a dangerously low rate. This was what had been creating the circumstances for the panic attacks.

By June my health had deteriorated to a point where I could barely shuffle along and spent most of the day in the comfort of my bed. My body shook and I couldn’t even button my shirt or hold a pen. I was slurring words galore and having mental blank moments. I was still being told that it must be in my head. I was on my own!!

A distant friend of my family, who is a doctor, heard about my condition and went away to research amiodarone. He pleaded with my family to get me off the tablet and give us the name of another cardiologist for a second opinion. I had to make a superhuman effort to attend his clinic. His opinion was that I should not have been put on amiodarone as I was not high risk. He advised me to stop taking the drug immediately and referred me to a neurologist. I suspected that the neurologist felt that a lot of my issues were in my head as he didn’t seem to know much about amiodarone but he suggested I get a nerve conduction test carried out.

When I got this done it showed a severe neuropathy, which is nerve damage, in my legs and arms and the prognosis was an 18 month recovery period that would not be complete. I was also told that the toxic poisoning damage to my nerves would continue for some time due to the length of time taken for amiodarone to leave my system. As you can imagine when this result got out there was a lot of medical running for cover and nothing more was ever said about it all being in my head. I am now 17 weeks off the drug and my energy is slowly improving but my legs and arms are getting more weak and painful. I had been told to expect that. I also have damage to the nerves in my face and scalp due to an injury to my jaw caused by a night time involuntary muscle spasm in my jaw related to amiodarone. I don’t know when the clock actually starts ticking on my 18 month recovery as the amiodarone may still be causing me problems. That all said I am capable of doing much more than I was, say, 8 weeks ago.

I am writing this story as one of the lucky ones. When I assess my present condition and what I have come through I don’t feel all that lucky but I am still alive to share my story about this poison drug.

I am angry. My anger stems from the fact that I was put straight on to a regime of this toxic poisoning without anything else being tried. My blood tests were sporadic and had to be instigated by me as was the one chest x-ray I got in 20 months. I was basically told nothing about what amiodarone could do to me. Could is probably the wrong word and would is much more appropriate. Side effects are certain. I have survived the side effects I got but my life quality has been destroyed for over a year now and my family have been innocent victims as well because of this poison. I am also angry that I didn’t follow my own instincts and throw the tablets in the rubbish bin. Despite all that my family are grateful to still have me with them and the stories on this site of the tragic loss of so many loved ones puts my suffering and my family’s anguish into some sort of prospective.

Some doctors acknowledge that amiodarone is a drug to avoid at all costs but it seems that an awful lot of doctors appear to think it is no more potent than an aspirin. I pledge to use whatever ability I have to alert everyone to stay away from this killer drug.
Amiodarone is not just a threat to the well being of the people of the USA this poison is a truly international danger to public health.

Alan


18 Responses

Stay in touch with the conversation, subscribe to the RSS feed for comments on this post.

  1. NickJC says

    Hi!
    You are indeed lucky to be alive !
    Go after the MD!
    So am I, but not that lucky. I have had my thyroid & nervous system damaged neuropathy
    due to this insidious (toxic) drug that does not metabolize as all others.
    The drug is 76% plain iodine and many manufacturers profit from it
    One spend 2 million to set up & manufacture it and got 2.5 billion in return
    $$$ talks and Congress kept its “mouth shut” when FDA wanted to bun it.
    For each congressman there are 6-lobyists paid by Drug Manufacturers
    The drug though is an ‘off label drug” and restricted by the FDA to be given
    only as a “last resort” & even then there is no data indicating it extends life…,..
    Most MD idiots that prescribe it are ignorant of its side effects and need
    go back to school. closely attend Pt, or have their S kicked.
    Google “the dangers of Amiodarone” & then file a suit against the MD & hospital

    Due to Amio toxicity I lost my thyroid and now on thyroid hormone therapy for life…
    Guess what ?
    Thyroid hormone therapy according to American Heart Association causes heart diastolic dysfunction which in turn leads to myocardial infraction… DEATH
    Another victim of screwed up MD’s

  2. SQuirrelly says

    I am glad that I found this site I too suffer from the numbness of the feet and calf .
    Only been on this drug since 8th January 2014..when AF went wild, rushed into A & E with a heart beat of 270 after three day after a Cardio version did not work..in Hospital for four days looped up to monitors on A\miodarone 3 days at 800mg per day and now on one 200mg per day. I have had three panic attacks and other symptoms that everyone has complained of. gOING TO CARDIOLIGIST IN fEB 2014…BY THAT TIME WILL KNOW MORE… and try to get something else as feel rubbbish on this drug….breathlees unable to walk too far….will look on facebook and see what ….I have had blood test for tixicity already and at he moment all seems ok…but will keep trying to get off this drugs

  3. Scott says

    Alan, I am getting very irritated over reading stories such as yours and hundreds of others, particularly seeing that I am going through recovery from the toxic effects of Amiodarone myself. Last Summer, I had a very bad reaction to a vaccine (Anthrax for a trip to Africa for work) that put me into A-Fib. This is the 2nd time I have been in A-Fib, the first time 3 years before when I had a very nasty bout of pneumonia. The first time I was cardioverted back into sinus and put on Solatol AF for 2 years. Then taken off Solatol AF and only took Bisoprolol for a slight BP issue. Then I took the vaccine for Anthrax and it put me into A-Fib. As I live in Germany on work assignment, I was placed in a German hospital. The German doctors tried to cardiovert me immediately and failed twice as an out-patient. They then admitted me in the hospital and had me start taking Amiodarone, building up to 1000mg per day over a 3-day period. The head German doctor spent 5-minutes with me and told me that they have had a high-degree of success with this drug and to take it as they perscribed, almost guaranteeing me that after the 3-days on the high dose of Amiodarone, I would be successfully cardioverted. Nothing else was discussed with me, briefed to me. Nothing about the side-effects, the dangers, the “avoids” such as drinking Grapefruit Juice. They asked me to take it and be quiet about it while I was under their care in the hospital. I built up to 1000mg per day on this stuff and felt terrible…really terrible. But… I also did easily cardiovert back into sinus. After after the conversion I was released and given a perscription to take 100 days worth of 200mg Amiodarone per day and 100 days worth of 150mg Pradaxa twice per day. Thus, I took this stuff as prescribed and just like the first cardioversion…it held, and I am still in sinus today. The problem is, after two weeks in the hospital, I was right back in there with massive ice-pick headaches. Theye were so intense, the hospital did a brain scan/MRI on me to make sure I wasn’t bleeding in the brain. The result was negative on the scan. They diagnosed me with migrains and sent me home. I asked them if either the medications I was on was causing the problem. The cardiologist told the neurologist “No”, but wouldn’t speak to me himself to tell me. I suffered greatly over the 3-months, until I hit the 90-day point and they did two holter-monitorings on me and verified I was still in good sinus. Then on Dec 2nd of 2013, they took me off Amiodarone completely, followed by 30 days after that coming off Pradaxa completely. Now… four months after my cardioversion, and being back in sinus with a BP of 125/80 and a pulse of 58, I feel twice as bad as when I was in A-Fib. I have read that this stuff stays in your system for around 100 days after taking it for 3 months. There are days I do not want to get out of bed, I am very tired, my right arm twitches once in awhile and I swear my organs seem to be in “pain”. Not to mention I am tired of that feeling of having a cinder-block on my chest. I am suppose to be in sinus! I am in sinus! Yet I feel very bad on some days with feeling sicj to my stomach and very, very weak. I have a 1 year old baby boy and a 6 year old little girl. There are days I think I am getting worse and even have the thoughts that perhaps I am dying from this stuff. Then I have days when I feel fairly normal. It hits me about every other day. I am reading madly online on what I can do to speed up the toxic cleansing of this garbage in me faster than the 100 days. Some online articles claim it can remain up to one year in your system! Through my own research, I then found out that this Amiodarone is suppose to be a last-resort drug. Yet…it was used on me right off the bat. I walked into the hospital with A-Fib. To be truthful, the A-Fib really didn’t bother me that much…I just did not want to risk the stroke from happening, thus it is far better to be in sinus. The German doctor told me that if I get A-Fib one more time (which would be three times then), he was going to do a cryoablation on me. This could always happen, but I can tell you this, I will not let him give me Amiodarone again as part of the recovery. They will have to use something else…otherwise, I will go back to the US and have the procedure done there. I understand many US doctors like using this stuff as well, thus I may have my work cut out for me. Bottomline…Amiodarone is a very nasty drug. Some say as strong as chemo-thearpy. As I have expereinced the side-effects, and continue to feel them even today, I believe every bit of what people say about this drug. If I feel this bad after taking 1000mg per day for three days and then 200mg per day for three months, I can only imagine what people feel like after taking this very bad drug for two years. I am hopeful that I fully recover. I have been off of it for 45 days now. I am seeing just a slight improvement, but nothing dramatic yet. I am only 49 years old. I need to recover 100% because I have a young family. I am glad I read your story.

    • Susan says

      Scott,
      I am so sorry for all that you are going through. I’m really glad you’re off this drug and will be praying for you and your family.
      I see that you have found the Facebook group Stop Amiodarone. It’s a really great group of people and I know you’ll find support there.
      Best regards,
      Susan

  4. Trish says

    Hi Alan my father was taking this terrible drug for 10 years. we took him off it approx 5 months ago. Your story is identical to his but the Drs are saying he has motor neurons. Did they say tge same to you??

  5. Alan says

    Sought legal advise (typo)

  6. Alan says

    As a follow up to my original post. I came off Amiodarone in June 2010. I am not completely back to full function but feel as normal as I have felt since I started this poison drug. I had the nerve conduction test done in July 2010 and was told my recovery from nerve damage to my legs would take two years and be incomplete. I had this test again two weeks ago and the damage has gotten slightly worse since the last test. This was probably because the drug remained in my system for nearly a year and continued to do damage. One leg is more numb than the other and I find it difficult to stand in one position for long. Walking any distance is an effort. I am very unsteady on my feet when walking in the dark or on a sloping surface because my brain is not receiving the right signals. My ankles feel like they have clamps locked around them and I have been told that this is not physical damage but simply screwed up signals coming from my damaged nerves. My energy levels are not what they were. In short my entire quality of life has been ruined by this drug. I try not to get angry with myself for continuing to take it when my body was telling me not to. I south legal advice and was told I would have to put my home at risk to fund a court case. The test in the UK is whether or not any reasonable doctor would have taken the same action as the one who put me on this poison. The outcome might be far from clear cut as it is the doctor and not the drug company I would be sueing. Basically I have been left with serious mobility issues and am still trying to regain some level of confidence in myself. My panic attacks have gone for which I am eternally grateful as I would not wish those on anyone. I have also stopped slurring the words that caused me problems. These issues that were caused by the drug have not stayed with me but the nerve damage won't get any better. I am blessed that my arms did not suffer the same fate as my legs and feet. The message remains the same. Avoid this drug at all costs. Side effects are not optional. The only imponderable is which ones you will get. I am lucky. I am still here to share the tale. You, or your loved ones may not be so lucky.

    • Trish says

      Hi Alan, my father was on this drug for 10 years. Came off it 5 months ago your story sounds identical to his. How are you now? The Dr’s are telling dad he has motor neurons! What do you think?

  7. StopAmiodarone says

    Faye, I'm so glad you dumped the drug!
    Yes you're right, if only one person is spared the horrible effects of this drug it is worth all the effort.
    I'm glad it was you and that you took the time to write about it!
    ~Susan

  8. Faye Marie Miller says

    What a story … I came so close to taking it .. but had a gut instinct I should check into it. My research led me to the Fb group Stop Amildarone. After reading a very short bit I told my husband and we together threw it out. Called my doctor and told him no way. I would more than likely have been one fo the ones that did not do well with it. I feel God spared me. Thanks you Alan and everyone for just being truthful and warning others.If only one hears and is saved the same fate . it has been worth it all. I am one …

  9. Amy says

    In my experience with a family member who took Amiodarone/Pacerone for 10 years , although their problem was not life threatening, anyone who takes that poison pill as I call it MUST get blood tests and check liver levels. The poison pill attacks the liver which of course is an important organ .. Once a peron stops taking the drug, it remains in the body for a VeryLONG period of time…. And it continues to do damage…It is one o the nastiest drugs out there yet e FDA does NOTHING!,,

    Everyone should read just HOW this poison pill got FDA approval….

  10. Suzie says

    Yes, you are one of the lucky ones….I'm jealous and happy for you all at the same time.

  11. Sandy says

    Alans story confirmed for me that amiodarone caused my panic attacks. I took myself off amio after 2 1/2 years because I wanted the panic attacks to stop. I was lucky to have only been on it for that amount of time. I have arithmic right ventral displashia, (ARVD) a rare heart disease, and went into cardiac arrest on 3/9/2010 when I was put on that horrible drug. I now have been put on Metoprolol to see how my heart reacts. It's been 2 1/2 months and so far so good. I am V fib and I have a def/pacemaker. My defibrillator has never gone off thank God. But maybe Metoprolol is an option for Mike. I had to change to the 4th cardiologist to get off amio and onto another drug. Follow your heart and find the doctor that will listen to you all.

  12. Marla says

    Mike, I second Susan's post—you must find a doctor who understands the extreme damage that's no doubt been done to your body by amiodarone. I cannot believe you have been on it ten years and haven't been told the many dangers, even as you exhibit these symptoms. You are clearly a tough bird to have hung in this long–find medical help who will get you off this killer drug! Our thoughts are with you.

  13. StopAmiodarone says

    Mike this such a disturbing story on many levels. I certainly hope that you will locate another doctor (possibly more than one doctor) to give you another opinion(s). You have done well to survive this long but you need to get off this drug. Please keep us updated on your condition. We'll be thinking of you!
    ~Susan

  14. Mike says

    I've been on 200mg amiodarone daily since 1996 for Irregular Heartbeat, I suffer with extreme tiredness all the time, Its so bad that I am too tired to go out and socialise the last 10 years.
    About 8 years after being put on this drug in 2004/5/ my Hospital cardiologist told me that I would have to take oxygen 15 hours per day, Probably lung damage the cardiologist did’nt say. About 4 years ago my feet became very numb and caused me to wobble when i walked, my Doctor led me to think that it might be diabetes, he never acknowledged that it was in fact amiodarone that was causing the problem , about this time my legs started to pain me so much that I had to rest every 50 Yards, also very breathless.
    About 1 Month ago my podiatrist at my local clinic when attending to my ingrowing toe nail ,caused two of my toes bleed rather badly, (without telling me what she was doing,) I told her to stop, demanded that she stop , she then applied two Iodine dressings to my toes,…… could the iodine dressings cause me to become allergic to amiodarone?, Two weeks after this incident I noticed my feet getting extremely numb within an hour of taking my daily dosage of amiodarone now reduced 150mg per day
    I am concerned to know what to do my Doctor just shrugs his shoulders!!! , After over sixteen years on amiodarone , I have suddenly become so allergic to amiodarone that my doctor has told me to stop taking this medication…Just 25 mg per day causes my feet and hands to go numb within half an hour,
    he said that he will decide on which medication I’m to take After he has spoken to my cardiologist .
    He said I must go back to see him in 2 weeks time

    Mike

    • Pam says

      Mike, how are you now? my husband has been taking this drug for over 4 years. He now has extreme shortness of breath and has the lung toxitity. He was never tested 1 time in the 4 1/2 years. I am so angry I can't function. Can we contact Lawyers or Medical boards. Pm

  15. mkakin says

    Thanks for sharing your story, Alan. We are all pulling for your recovery and wishing you the best. You keep the fires stoked on the other side of the Pond! We are behind you.



Some HTML is OK

or, reply to this post via trackback.