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.



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