I was diagnosed with LQT after 20 years..by Rebecca Scheffe

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!

 

More to explorer

Share on whatsapp
WhatsApp
Share on facebook
Facebook
Share on twitter
Twitter
Share on reddit
Reddit
Share on email
Email