I have epilepsy. Epilepsy, like many psychiatric and neurological problems, are only familiar to people based on Hollywood’s depiction. Most of what you see in movies is inaccurate. This is unfortunate because it does not help those actually afflicted with the disorders and can lead to unfounded discrimination in school, social, and employment situations.

Many of my clients have children who have been diagnosed with epilepsy especially those on the Autism Spectrum. This can be scary for parents because if they do not also have epilepsy they cannot relate to what it is like to experience brain auras and seizures. Once they learn I have epilepsy, their first question is, “What is it like to have a seizure?”

I thought it might be interesting to share my experience and my daughter’s experience of seizures. My seizures in my brain are not near a motor center so you would not see me having a seizure. This is a surprise to most people’s idea of what a seizure is. This can also lead to many children going undiagnosed. For me I can only identify the aftermath of the seizure. I feel awful. I become weak and tired. Sometimes I cannot walk well. On occasion my vision is disturbed. I might see flashing white lights or falling stars in my peripheral vision. On a few occasions I have lost part of my vision. I might or might not develop a headache or even a migraine. I can sometimes continue to function, but if it is really bad, I have to lie down or sleep. I feel nauseous. Sometimes I hyperventilate. In moments the right side of my face droops. I cannot focus well on anything. I experience something of a cognitive fog. While I become a withered version of myself, my daughter become irritable and very grumpy. Her seizures are closer to the emotional center of her brain. Other symptoms of the seizure can include numbness in my hands and or arms, deja vu, anxiety, sudden depression, panic, or sudden change of mood or personality.

My recovery from the seizures is sometimes quick and sometimes takes a day. The seizures do not physically hurt me. I am not in immediate danger when I have them. Untreated epilepsy is not healthy for brains, however. When I finally started on a good medicine for me at the right dose for me, I started sleeping better. Interestingly, I never knew I was not sleeping well. Like a color blind person, how would I know if I was not sleeping well if that has always been my experience? On my medicine I fall asleep more quickly, sleep more soundly, wake less, sleep longer, and feel more rested when I wake. My seizures were interrupting my sleep without my knowledge. Interrupted sleep is not a good thing for your overall health.

The key to managing my epilepsy is knowing and avoiding my triggers. Stress, flashing lights (the worst is the flashing sunlight between trees while driving or emergency vehicle flashing lights), lack of sleep, extreme weather (wind, heat, cold), carnival rides and roller coasters, and certain movies (especially those with flashing lights, quick scene or perspective changes, or water scenes). I also cannot watch or play video games mainly due to the frame rate and the movement. I have noticed that a number of my clients notice a behavior change in their children after playing on their IPads or computers for a long period of time. This can be a clue that the child is suffering from a form of seizure in the brain that might warrant a visit to a neurologist.

This is my experience. Every person and every brain is different. So, every person’s experience of a seizure will be different although there can be common experiences between people. If you have further questions, please, do not hesitate to call or email me. I am always happy to answer any question.

Important Note: There is now research pointing to the notion that migraines and epilepsy are more related than we ever believed:

http://news.psu.edu/story/332549/2014/10/30/research/link-seen-between-seizures-and-migraines-brain?utm_source=newswire&utm_medium=email&utm_term=332620_HTML&utm_content=10-30-2014-21-14&utm_campaign=Penn%20State%20Today

“Seizures and migraines have always been considered separate physiological events in the brain, but now a team of engineers and neuroscientists looking at the brain from a physics viewpoint discovered a link between these and related phenomena.”

“Adding basic conservation principles to the older models immediately demonstrated that spikes, seizures and spreading depression were all part of a spectrum of nerve cell behavior. It appeared that decades of observations of different phenomena in the brain could share a common underlying link.”