Nocturnal Epilepsy and the Role of Sleep

Besides idiopathic: 

no known cause

Nocturnal:

seizures occurring during sleep.

Or ~ within about 20 to 30 minutes after waking up

Or ~ when there was not the

right amount or good quality of sleep.

In the early days of my nursing career, 

when my sons were little guys and 

I was a 20 something mom

I decided that working night shifts 

would be a good thing (remember 

I didn't want to let my epilepsy affect my work)

And it didn't ~ I just couldn't stay awake on a night shift.

So after 6 months of trying, my doctor and I decided that 

night shifts were not a good thing for me.

Poorly managing my epilepsy for about ten years, my seizures continued.

Realization dawned:

anticonvulsant medication was not the be all and end all of this journey.

Strictness with myself ~ super strictness ~ was the action plan.

- Bed by seven in the evening

- Asleep by nine at night

- Up by five in the morning, 

- Work at seven in the morning.

A bit of overkill for a long time but it worked then ~ still works today. Evening shifts starting at three in the afternoon provided the best sleeping hours for many years.

My good fortune in my career? ~ acquiring nursing positions with only day shifts or evening shifts.

“[S]leep is the golden chain that ties health and our bodies together.”

~ Thomas Dekker

Author's note:

February 2024

The descriptions of forms of epilepsy have altered over the years as research has combed through the confusing evidence that neurological disorders presents. Nocturnal epilepsy does not have the same description as I had been given in the ’60’s. However, it is also a mainstay of my epilepsy seizure management. If I’ve been out ‘past my bedtime’ or just watch TV past midnight; or if it is  too hot, too cold……if anything disrupts my sleep, I know that the next morning I need to be very cautious. I found, by trial and error, that night shifts were not for me because of this very disruption of the circadian rhythm and taking an anti epileptic (phenobarb is a sedative) medications at bedtime. Sadly, I was unaware of this side effect of phenobarb at the time.  So whether the label hung on this form of epilepsy is Nocturnal or not, the role of sleep is a critical issue. One I ignore at my peril.

Author's note: August 29, 2024

Retired now, the concerns about shift work no longer affect me. However, maintaining a regular sleep schedule is still important. The plan is now my own and I make the choices about times of sleep - or napping if that fits the bill! And on a daily basis.