My name is Becky and I was diagnosed with Long QT Syndrome in 2010 when I was 37 years old.
At the age of 17, I had a terrible experience as I went to bed one evening and had my first seizure, it was so terrifying I thought I was dying. The doctor was called but he suggested it was a panic attack. I had fallen out of the bed and had convulsed, thrashed around, arched my back and my eyes rolled back (this is what my friend who witnessed it had said). I can only describe the feeling like I was dreaming which stopped abruptly by manic, loud, distorted noises and the feeling of being pushed, pulled and falling all at the same time. When I eventually came around, I was very confused and unable to speak for a while.
I had more seizures every year or so and they diagnosed me with Nighttime Epilepsy and prescribed Epilepsy medication but I continued to have the seizures. They usually came in clusters, which was horrible as I would worry about having one and stress and sleep deprivation would bring them on. I would never sleep in a house alone and I dreaded going to bed every night. I cracked my head and teeth a couple of times and chewed my lip so it was swollen and bruised. Sometimes I would have a migraine straight away so would have blurred vision, headache, numbness and sickness.
In 2007, I had a cluster of seven over three days so a Neurologist referred me to see a Cardiologist as he thought it could be an arrhythmia problem. After an ECG was taken, they decided to put a reveal device in to monitor my heart activity for up to three years. After two and a half years, I had another seizure so they were able to take a reading which showed a pro-longed QT Interval. I was then diagnosed with Long QT Syndrome Type 2. A few days later I had an ICD fitted (pacemaker/defibrillator) and prescribed Nadalol beta blocker for life.
Being diagnosed 20 years later was such a relief but also a shock that I had survived when others had not. I had EMDR Therapy due to PTSD from the seizures which has helped so much as it used to rule my life. Day to day I live a normal life but unfortunately it’s not been smooth sailing, six months after having the ICD fitted I had DVT on the vein where the lead is in my arm. A year later, a cyst burst on my ovary and because of the warfarin I had internal bleeding and was in hospital for nine days. The following year my lead cracked so that was replaced and in a month’s time my battery is due to run out so I’m having the ICD replaced.
Having had these experiences, I think it has made me appreciate life and cherish every day. I have a great quality of life, I got married three years ago and we are lucky to have a gorgeous son who is six months old who unfortunately has inherited the Long QT so he is currently on a liquid beta-blocker. I just hope that he won’t have to go through any trauma and get to live life to the fullest!