ICTAL; relating to or caused by an epileptic seizure

DEJA VU: 1991

 

...a sensation of familiarity, rising from my stomach, like a glowing star. An involuntary smile crosses my face. This is like a film I have seen many times before, where I know what is about to happen. Afterwards I can’t speak or understand language for several minutes.

This is an ‘epigastric aura’, it’s a partial seizure. The temporal lobe area of my brain is affected by abnormal electrical activity. The temporal lobes lie along the sides of my head, just above my ears, and process emotions. Loss of language during and after a seizure is common.

THE MORNING AFTER: 1993
In a flat in Bulgaria, I awake. Trying to sit up my body is filled with pain, every muscle strained. I try to speak and can’t, I’ve bitten through my tongue. The blood sticks my face to the pillow. I’ve had a ‘tonic-clonic’ seizure in my sleep, what most people think of when they think of epilepsy, a grand mal fit.

My partial seizures have continued for 2 years untreated, and the abnormal activity has spread to a wider portion of my brain. Secondary generalisation occurs in about 60% of people with temporal lobe epilepsy.

MY GP
My GP tells me I had a seizure, a ‘fit’. But that does not mean I have epilepsy. Many people have one seizure in their life. If he diagnoses me I’ll lose my driving licence, he says.


I didn’t report my temporal lobe seizures to my GP. I didn’t know they were seizures. I’d been told they were anxiety attacks. My GP thought I’d only had one seizure - it takes at least two to get diagnosed.

6 MONTHS AFTER: 1994
My girlfriend leaves early for work. She returns that night and I’m still lying in the same position. She turns me over to see my face red with burst blood vessels.


At the hospital I’m told I have epilepsy. I’d been left unconscious by another tonic-clonic seizure. At the hospital my condition was diagnosed, and I was referred to a neurologist.

THE NEUROLOGIST
In a 20 minute talk, the connection is made between my auras and the tonic-clonic seizures. I’ve been having regular epileptic seizures, of increasing intensity, for two and a half years.

A neurologist is a doctor who specialises in the diagnosis and treatment of diseases that affect the brain and nervous system. He recognised my description of my epigastric auras, and this is familiar to him. But it’s changing my life.

THE PRESCRIPTION
I’m given a prescription. I return for MRI scans and EEG monitoring after about a month. Then I don’t hear from any one else for 10 years.


I’m given medicine to stop the seizures, and once that is working, I’m called back for Magnetic Resonance Imaging scans to look for brain abnormalities that may be causing the seizures, and an Electroencephalogram to examine my brain activity. Then it is assumed that my medicine is working unless I report otherwise.

10 YEARS AFTER: 2004
In the evenings I often find myself wandering around the house with no memory of what I have been doing. My friends tell me I lost consciousness while watching TV, and began kicking, and groaning.


The medicine has stopped working, and my seizures have returned. About 30% of epilepsy patients are not fully controlled by medicine. The seizures are still affecting my temporal lobes, causing loss of consciousness and no memory of the seizures.

TESTS
Tests begin. I’m described as a 'difficult' case. There is constant background epileptic activity in my brain, with seizures flaring up, from a point that cannot be located.


The tests are to search for a ‘lesion’ in my brain, the point the seizures originate from. I undergo many kinds of brain scan, and spend days with electrodes glued to my head and a video camera pointed at me. I get to see myself having a seizure for the first time – it’s an emotional experience.

ANOTHER PRESCRIPTION
My medicine is changed, until a combination of 3 drugs restricts the seizures to night time only. I feel exhausted all the time. Loss of sleep and side effects from the combination of drugs is causing exhaustion.


There is a balance between high dosage to stop seizures, and side effects. My Neurologist works hard to find the optimum balance.

EXHAUSTION
I look normal. I am ashamed to tell people I have epilepsy. My debts increase. People assume I am unwilling to work and bad with money. At times I am very unhappy.


I don’t look unhealthy, but epilepsy is restricting my ability to work and manage my life, but if I don’t seek help, no-one knows.

SOLUTIONS
I decide to learn about epilepsy, I find great sources of information.
I stop hiding my condition, and decide to talk about it. I find understanding. 
I make this exhibition and find pride. Support is avaiable from:
National Society for Epilepsy 01494 601400
Epilepsy Action 0808 800 5050 
My GP provides me with a subsidised counsellor to help me manage my situation.

2007
I have been getting assessed for surgery for 3 years now. Maybe if the spot in my brain where the seizures begin can be found and removed it will help.


Currently my daytime seizures have started again... I’m waiting to see my neurologist to arrange more tests, and adjust my medicine again. In most of the world people receive little or no treatment for epilepsy, and are often cast out of society. I'm relatively lucky.

 

BRAIN SURGERY 2011
I finally had surgery at the beginning of March 2011. For 5 weeks I had no seizures. Then they began again, soon reaching a daily basis. I was devastated. I had lived in hope of this surgery for many years and felt let down by it. I was devastated.


I have learnt that if I sleep well and longer I reduce my chances of having a seizure. For several months after surgery my memory was terrible, but it is improving with the passing of time. Depression makes memory even worse. It's important to develop a positive attitude, but not always easy. Look for help if you need it.

LIFE GOES ON 2013
It took me a couple of years to become calm and positive. Maybe many people do better than that and others have a harder time. I don't know, because I have no contact with anybody else who has had unsuccessful surgery. It would be good if there was a network of people who have undergone brain surgery that I could make contact with.