Epilepsy Ontario :: It's Like Somebody Yelling Boo

It's Like Sombody Yelling Boo!

by Lee Biddle
My experiences with epilepsy began when I was 14. I started visiting the children's hospital in Ladywood on regular occasions. I constantly complained, "Doctor, Doctor, I am getting this tingling sensation in my stomach." The stomach tingling would cause my voice tone to become higher. Sometimes I felt so stupid sounding like a little girl.

This stomach sensation was studied at Aston University by Birmingham. Doctors seemed to understand, but were puzzled too. It was always so frustrating going back and forth trying to explain. I frequently experienced the tingling sensation, yet the EEG tests and MRI scan results constantly showed that there was nothing wrong with me.

As a child the sensation came on regular occasions in the centre nerve of my stomach. Then suddenly the tingling sensation would become a lot stronger in my chest and my voice tone became higher. Like somebody yelling, "Boo!" and making you jump out of your skin. My mum would explain it as somebody having butterflies in their stomach.

The following year, my family and I, went along to the Queen Elizabeth hospital in Edgebaston of Birmingham. The doctors had news for me: "We are sorry Lee, the EEG test results have just come through. You have night time Grand Mal epileptic seizures."

A couple years later, I went on to Stafford College to study my BTEC Diploma in Business and Finance. Still, I suffered these tingling, tickling sensations in my stomach. But I went on to study, passing my first diploma in business and finance.

Then, shock! Just after starting my second diploma, again in Business and Finance and also still at Stafford College, something very misfortunate happened. In class, out of the blue, Bang! Down I went jerking and twitching. I was taken to Stafford Hospital in an ambulance.

A few weeks later it was confirmed to me: "Lee, you have Grand Mal epilepsy." The shock to my family was unexplainable. I had started at age fifteen having Grand Mal seizures at night. Now at age 17, I suddenly started having Grand Mal seizures in the daytime as well! But life was to carry on. In late 1989 I started my first full time job at an industrial company. I would work there for ten years.

Then in November of 1991, aged 20, I was back in hospital. I expected the doctors to stick electrodes on my head and do their tests. However, I was surprised to learn that the electrodes were to be inserted onto my brain! I stayed at Maudsley Hospital in London for a few days. I had to stay fully conscious until I had enough seizures to identify where the troubled abnormal cells were coming from in the brain, then I came home.

Eventually, after having had results from the implantation of subdural and depth electrodes, I returned to Denmark Hill Hospital. I discussed the results of my electrode tests with my surgeon, Professor Polkey. It was time to make an unenviable decision - whether to undergo the surgery, which had a 25 percent chance of total success.

I decided to go ahead despite the risks because I was so under the weather. October 23, 1992, was the day after the operation. I was 21. When I came around, it was horrific; my head was twice its usual size. I suffered headaches for nine days.

But the operation was successful! Never from that date have I blacked out. Also, a rash on the left side of my face, which I had experienced since childhood, seemed to have gone as well.

After returning to work and now seeing the world in my twenties without landing on the floor every five minutes, I was to experience something quite dramatic. I began regularly suffering delusions. I became suspicious of others, often thinking people were talking about me. Sometimes I thought work mates were dropping boxes on the floor to make noises on purpose, just to annoy me.

Other times I would have arguments at home. One time I was upstairs when suddenly I smelled bacon. Running down the stairs I shouted, "What's that smell! You're cooking that on purpose, aren't you mum!" Another time mum was cooking me pie and mash. Suddenly I walked in the kitchen and threw it into the bin. Often I would think mum was talking about me or saying things to people about me.

This was all due to reducing a medication called clonazipan too quickly, causing me to come down with the side effects of incipient psychosis. I constantly thought people were talking about me. Doctors at the hospital put me onto a tablet for psychosis imbalances called haloperidol. I successfully got over the psychosis after six months.

Eight years later, in 2001, I was asked to go into Kings College hospital in London for EEG tests. So off I went, expecting the normal electrode scans. Little did I know that I was to undergo another operation. My doctors told me they thought they'd identified the problem. They said "Lee, you can have the operation, but you have to stay awake, so think about it."

It took me about five minutes to make my decision. I said, "If it's going to get rid of these damn tingling sensations in my stomach and bring my health back then I'll go for the operation."

August 1st, 2001 was the day of the procedure, which involved me sitting for four hours while surgeons carried out complex brain surgery. I was rolled into the operating theatre. In the first minute or two I felt an injection into the back of my head. The pain was horrible. I thought the machine was a drill going through the back of my head. Then the antibiotics started to take power. I was absolutely terrified.

About one hour later I felt nothing, apart from the tingling stomach sensations of which I had to tell doctors during the operation. I was still having around 100 of these tingling attacks a day and they were driving me mad.

I gritted my teeth throughout the surgery. As the operation carried on, I had to tell the doctors when having any tingling nerve sensations so they could try and identify the problem. I remember the last moment of the operation I said "Dr Mullatti!! One is starting now!" But as I began counting to ten, the tingling stopped. My voice did not rise or anything.

It was a dramatic experience, but not as painful as I had thought it would be. Four hours later the operation was over. I was so relieved! Now I have gone through brain surgery asleep and awake.

It was fantastic, the sensations were nothing like they had been. The seizures were not reduced in amount, but very much diminished in severity. Now I only jerk a little and my medication controls the eye twitching.

One thing I have found out is that fresh air helps reduce the strength of my seizures. Now I am able to study the problem and am fully aware of it all. On seeing my doctors I always bring along notes that I have made on the seizures I have experienced over the year.

Well, I have had more tests and may soon be going on to totally destroy the tumour on my hypothalamus. Aside from wanting my epilepsy to completely go away, I am now interested in helping people around the world with epilepsy, and educating the public about various medical conditions. If we can all talk about epilepsy openly, together, then eventually we can destroy it before it controls our lives anymore. Something I shall always remember when thinking, "why me?" is that there is always somebody worse off than myself.