Billy’s story

EPILEPSY…a new beginning!!!

Monday 23rd February 2013 around 10.30am…..

‘Could you send an email too….’ a colleague asked. I looked at my computer screen, then keyboard and mouse…. ‘how do a send an email’ I thought!!! Then nothing!

Some time later, I woke to a paramedic repeatedly calling my name, you have had a seizure.’ What’s a seizure’? Could you lie down on the trolley bed? No! I was aggressive and un-cooperative to the paramedic and also my wife who had been called to work.

Little did I know then that full time work, finances, friendships…life in all its forms had changed forever.

Later that day I was admitted to hospital. I had my first tonic clonic seizure. My wife shared the various stories of work colleagues what happened. Three days later at home, again another one, this time worse was to happen… a dislocated shoulder and more aggressive behaviour and shouting at hospital staff.

Weeks in bed followed with hundreds of lesser myoclonus seizure. No chance of an NHS appointment with a neurologist 5 months waiting list. NHS blood tests, EEGs and MRIs at least 5-6 months waiting list. All had to be private appointments & tests. Epilim medication given but tremors became worse. Eventually after a year, a combination of Keppra & Clonazapem started to control them.

A year later, August 2014 another diagnosis followed, this time Obstructive Sleep Apnoea. (…. to be exact 3 different consultants and 3 different diagnosis varying on the severity of sleep apnoea). At the time of my epilepsy seizures, my wife noticed I was stopping breathing, choking during the night and suffering extreme tiredness during the day. Like the ‘chicken and egg’ question which came first, so the discussion of epilepsy or sleep apnoea began and how to treat me. Not with medication but CPAP ( Continuous Positive Airway Pressure). Supposedly the gold standard of treatment for sleep apnoea but not that good when seizures where continuing.

In 2016, after a hospital stay in Glasgow and a 2 week admission to the Scottish Epilepsy Centre with video EEG analysis, another diagnosis Functional Neurological Disorder seizures (FND) was added to the list.

What happens to your body with FND?

A myriad of thoughts, confusion, frustration, negative & guilty emotions:- was I suffering from a psychological illness, another neurological illness, was there a mis-diagnosis, was it connected to epilepsy or something more serious? There was relief on one hand that this additional seizure disorder wasn’t causing anymore brain damage but what was happening to my body to cause all these continuous debilitating impairments and daily symptoms?

No single cause but my epilepsy, my sleep disorder and anxiety combined were abnormally effecting my brain signals being sent along the central nervous system to the body at the correct time. Thus symptoms of chronic fatigue, involuntary movements, inability to speak, brain fog, non epileptic seizures, headaches, forgetfulness and altered awareness are the norm when I try to wake up most mornings.

FND is like when your computer screen freezes, no damage done to the hardware but just a multitude of data needing processing and being sent to the right part of the computer is stopped or lost. It really happens and no amount of hitting keys will stop it. The computer needs a ‘reboot’ as does my body.

In 2019, not surprisingly, confirmation of a diagnosis of depression and severe anxiety added to the health conditions and more medication and CBT therapy started and continues to this day.

Consultants openly saying I’m a complicated case. Does anyone else have a foot in all these camps….epilepsy, sleep apnoea, anxiety and FND???

NHS

Sadly like many of the 15000+ epilepsy patients and 1500 FND sufferers in Northern Ireland today help is needed more than ever.

This is why it’s so important to continue to raise awareness of epilepsy. There’s still so much stigma around Epilepsy and FND. Even medical professionals can treat FND patients like they’re making their symptoms up or it’s ‘all in their head’. Nothing is further from the truth…. all of which has changed my earthly life forever. Now I’m trying my hardest to pace myself through each day but feel after 8 years I’ve lost control of life and my future.

As epilepsy was a new beginning, so too I have lots of new things to learn humbly as a Christian, God always rejoices over me, hears my cries, begins and brings to an end. I need to embrace life, acknowledge how hard each day is and not let my disability define me fully.

It’s taking me 8 years to share my story outside of family and friends. Please, take your time and consider a goal this month:- begin to share your story, encourage yourself and wear something purple.

Take care
Billy