All my trust has gone

When I have a seizure my body goes rigid and then begins to
twitch or jerk; I may also cry out or whimper. A fit lasts for 20
minutes or more and attempts to restrain me panic me. After I come
out of a seizure I’m often not completely aware of my actions.

This may sound like epilepsy but it isn’t – the condition is
known as pseudo-seizures. This is an unfortunate term because it
describes a psychiatric condition that is very real.

People who suffer from pseudo-seizures often have a troubled
psychiatric history. I spent three years in and out of foster care
placements before being adopted at the age of six. I was placed in
a caring family but found it hard to adapt. Schoolwork was also
difficult, and at the age of eight I was diagnosed as dyslexic.

Later I moved to another school where the dyslexia department
was not as good, and I started to experience behavioural
difficulties and depression.

My parents moved me to another school, and for the first six
months things seemed to be back on track. However, I wasn’t winning
my fight with depression and spent a lot of time off school sick
with colds and infections. Eventually I attempted an overdose, and
the hospital staff sent me to Great Ormond Street Hospital, where I
was placed on a psychiatric unit for four months. For the first
time I could talk about my problems, knowing the staff would
help.

Soon I was well enough to return to secondary school. But I
could not deal with day-to-day pressures and was readmitted to
Great Ormond Street. When I left hospital after two months I vowed
never to return, and I haven’t.

I suffered my first seizure at home with friends in October
2004. My friends called an ambulance, which took me to the nearest
accident and emergency department. I spent three hours being
physically restrained by the hospital security staff. Eventually I
came out of the fit. A&E could not explain it so put it down to
drink and drugs. But I have never taken drugs.

Since then I have been admitted by ambulance to five A&Es.
Often the police are called to assist the ambulance crew. I have
been tied to, and handcuffed to, the ambulance bed. During my last
seizure I damaged my thumb because the handcuffs were not
double-locked.

Since these seizures started my trust in health care
professionals, police and GPs has gone. Even though I have been
diagnosed with pseudo-seizures I’m still not getting the help I
need. There is a lot of information on pseudo-seizures in the US,
but in the UK few professionals recognise the condition.

I am so sick of being told by professional carers, or
overhearing them say, that I’m faking the seizures that I am
setting up a charity to assist people with the condition. It is
just as serious as epilepsy, and all health care professionals
should understand it so the same mistakes aren’t made again.

Paul Orr experiences pseudo-seizures.