How I Manage My "Fairly Uncommon" Partial Complex Seizures
It was a Saturday afternoon in 1995 and my husband and I were at a crowded, noisy tile store with our three-year-old son. We recently moved into the home we built and were looking for flooring for our powder room. After walking for what seemed an eternity I needed a chair. There were none, so I plopped myself down on the flat edge of a display and sat my son on my lap. We were fortunate he was an easy child who instinctively snuggled against me as we took a break from shopping.
Then it happened.
My thoughts were replaced with darkness
It’s hard to describe what I’m about to, except to say I felt some odd sensations in my head. My thoughts completely vanished and were replaced by darkness. I fell deep within myself, barely able to focus on my surroundings yet somehow aware my child was on my lap. I screamed my husband’s name. The store’s music and the voices of customers must have drowned out my voice. I don’t remember much else except, finally, the sudden appearance of my husband and the worried look on his face. I’ll never forget that look. I told him to grab our son, get me up and help me to our car.
Being referred to a specialist in seizure disorders
Days later, after being examined by my neurologist, she referred me to a specialist in epilepsy and seizure disorders. Dr. Blanca Vazquez admitted me for an overnight evaluation at New York University’s Comprehensive Epilepsy-Sleep Institute where I’d be hooked up to a machine (much like a sleep center) and observed for brain disturbances.
An overnight evaluation
The only light-hearted moment in the hospital was when my brother visited and said I looked like Buckwheat from The Little Rascals. My short curly hair, covered in paste and probes, proved him right. We screamed with laughter. Lying in the hospital bed I wondered what was happening, but never worried. It’s not my nature, but I do remember missing my son and wanting to get back to him as quickly as possible. Fortunately, he was in good hands with his four grandparents doting over him.
Partial complex seizures
The next day, the probes were removed before Dr. Vazquez arrived. When she got to the hospital she took a look at my readout to determine what was wrong. At some point, she explained I had partial complex seizures which, according to the National Multiple Sclerosis Society’s website, are:
“Partial complex seizures are the result of abnormal electrical discharges in an injured or scarred area of the brain, are fairly uncommon among people with MS. Their incidence has been estimated at 2-5 percent, compared to the estimated 3 percent incidence of seizures in the general population.”
I guess I'm fairly uncommon.
Are you diagnosed with epilepsy in addition to your MS?
According to Epilepsy.com:
- A seizure that starts in one area or side of the brain and the person is not aware of their surroundings during it is called focal (onset) impaired awareness seizure.
- This term replaces complex partial seizures. The word "onset" is optional.
- Focal impaired awareness seizures typically last 1 to 2 minutes.
- These seizures may have an aura (or warning, which technically is itself a focal aware seizure).
- These seizures include automatisms (such as lip smacking, picking at clothes, fumbling), becoming unaware of surroundings, and wandering.
- Many treatment options are available, including medications, diet, surgery, and devices.
A dark and scary place
The seizures I experienced put me in a dark, scary place. I felt as if I was in a black hole and I couldn’t climb out. They lasted for a few minutes and when they were over I returned to normal, forgetting any thoughts prior to the seizure. I would feel overwhelmingly exhausted and frightened.
More seizures were to follow my visit to the hospital. It got to a point where my husband could look at me and know it was happening. He’d hold my hand and, at my insistence, gently talk to me. His voice is soothing and reassuring. I was fearful of losing consciousness, so the sound of his voice helped me through.
An antiepileptic medication helped
My doctor prescribed 400 milligrams/3 times a day of Neurontin (Gabapentin), an antiepileptic medication that affects chemicals and nerves in the body that are involved in the cause of seizures. It took a while but (knock on wood) I haven’t had breakthroughs in many years.
If you’re one of the “fairly uncommon” people experiencing any symptoms I described, please see your doctor immediately. It’s important to get tested for seizures. I’m so glad I did. I never want to climb back into that black hole again.
How many specialists did you see before finding "The One"?