My name is Keyt (Kate), I am 51 years old and I have had Epilepsy caused by Hydrocephalus since birth. Unless you are someone who has known me longer than 15 years you may not know this fact because I have been lucky enough to have found a drug cocktail that has stopped the seizures. However, it was a very long road to this point which included all kinds of medication trials, hospitalizations, various doctors and even comas and dying.
Like I said, my epilepsy was caused by Hydrocephalus. Because this is a hydro blog I won't go into too much detail except to say it's an overabundance of spinal fluid in the brain causing a swollen head and various other health problems, including seizures.
I began having seizures at 3 months old. My mom took me to numerous doctors but because infant neurology wasn't common in the late 60s/early 70s i was hospitalized often and placed on the few medications available at the time.
By the time I reached 5 years old I had become so sick doctors said I would never be able to go to school. Finally at that age I was placed in C.S. Mott Children's Hospital in Ann Arbor, Michigan where, while in a coma I was finally diagnosed with Hydrocephalus.
School wasn't easy from kindergarten through graduation. Kids never understood me because if I wasn't having seizures I had major temper and behavioral problems because of the seizures or the high doses of medications I was on. Teachers tried to handle me but the older I got the harder to handle I became. Some thought i was just incorrigible and my parents were just making up this thing called hydrocephalus.
As an adult, seizures affected my life more than most people knew. I was still having breakthrough seizures (seizures despite being on medication) and by the time I was in my late 20s I gave up and stopped taking any meds at all. I began drinking a lot and acting out with every boyfriend I had. I didn't care what was happening with my life because once anyone heard the word epilepsy they would stop talking to me as much or just disappear.
In 2001 I was in a very bad car accident. I remember feeling as if I was about to pass out and while driving down a busy road with few open spaces, I ended up in a swamp. Witnesses say I traveled at least a mile and miraculously never hit a car or a house! Call it a miracle or a wake up call, or both, this was when I decided maybe medications were necessary. Since then I have been on Tegretol and Neurontin and ive only had 1 seizure. That one was because I had a kidney removed and couldn't take the doses I had been on.
Epilepsy happens in many forms. Some people have reactions to light or extreme temperatures (I dated a guy once who would have full blown seizures up to 40 times a day if it was hot outside!), others can't handle quick movement like in cars or amusement park rides. Some people have full blown fall on the floor, twitching and drooling seizures, others stare off into nowhere for a while.
Epileptic patients rarely talk about their condition even when it's very obvious. We want patience and understanding for our behavior because even if we aren't having seizures, epilepsy still has an affect and so do the medications we have to take for a lifetime. Seizures will seriously affect the brain, some more than others. In my case I have a speech impediment and bad anxiety disorder. I know some people who can barely talk or walk at all.
As with any other disABILITY, most people would rather others asked them about their illness than be judged for it. I've had seizures at school, at family gatherings, with friends and various places in public. I don't mind answering questions as long as others are really interested.
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