A young dad with severe epilepsy has been left with a stark choice – have part of his brain removed and risk losing some of his memory or continue lots of medication every day for life.
Gary Henderson, 29, from the Hilltown, has been suffering seizures since he was diagnosed with the condition when he was just 14 months old.
He has to take almost 4,500mg of medicine every day just to limit the number of fits he has – and has faced cruel taunts from bullies who call him a “junkie”.
There is no cure for epilepsy, although Gary was told that one potential way of better controlling the condition was to have part of his brain removed.
Gary said: “Doctors told me that they could remove part of the brain that was damaged and that might help ease the symptoms.
“However, I was told the downside of that could be memory loss.
“That’s not something I want to happen but the only other option is to continue taking almost 4,500 mg of medicine every day.
“For now, I have opted to stick with the medication.
‘‘It’s horrible having to take it but I don’t want to risk losing my memory.
“I have a nine-year-old daughter and I would hate to lose any of my memory involving her.”
Gary said he has decided to lift the lid on the harsh realities of epilepsy to help people understand the condition.
He added: “I have what is known as complex partial seizures and drug-resistant epilepsy.
“I live in daily fear of having a seizure which can be very severe.”
Gary said that he suffers about three to five a month and sometimes he can have more than one episode a day and is unable to work as a result.
He said: “I keep a diary of when episodes occur so I can show them to my doctor.
“In January I suffered four in one day and the following week I suffered a total of six seizures over three days in a row.
“The most recent seizure I had was on May 6.
“When I take a seizure I am in genuine danger of seriously hurting myself.
“Recently I was leaning out my window speaking to a friend in the street below when I took one.
“Fortunately there was another friend in my flat and he grabbed me by the legs to stop me falling out of the window.”
Gary said that his medication helps to control his condition but that, too, has a serious downside.
“I have to take loads of pills every day and I have been accused several times of being a junkie, which is absolutely a horrible thing to be called. I have taken seizures in public places and this has led to pretty bad bullying.
“I wish others would realise that people with epilepsy have no control over when a seizure occurs and that is devastating for them to have this condition.
“I wear a bracelet that carries information about my condition and what medication I need, so if I have a seizure people can read the details.
“I would like all people with this to wear a bracelet or ring with this information, and I’d like the public to be aware to look out for this if someone is having a seizure in front of them.
“Life with epilepsy is very hard. I don’t know what’s ahead of me, but for the foreseeable it’s going to be difficult.”
What to do when ‘nobody’s home’
Complex partial seizures – also known as focal onset impaired awareness seizures – can have a devastating effect on someone’s life.
It’s described as a seizure that starts in one area or side of the brain.
This is most often in the temporal lobe or frontal lobe of the brain but they can also start in other areas.
During a seizure the person is not aware of their surroundings.
Focal impaired awareness seizures typically last one to two minutes.
These seizures may have an aura or warning, which are in themselves a type of focal aware seizure.
Symptoms include automatisms such as lip smacking, picking at clothes, fumbling, becoming unaware of surroundings, and wandering.
When they involve the frontal lobes, you may see bicycling movements of the legs or pelvic thrusting or other complex movements.
The person loses awareness and stares blankly.
So even though their eyes are open and they may make movements that seem to have a purpose, in reality “nobody’s home”.
If the symptoms are subtle, other people may think the person is just daydreaming.
A person’s ability to respond may be impaired.
Some seizures make the person unable to move yet still aware of what is happening around them.
Advice for if you witness someone having a seizure includes not to use restraint, remove dangerous objects from the person’s path, calmly direct the person to sit down and guide him or her from dangerous situations.
Use force only in an emergency to protect the person from immediate harm and remain with the person.