Wednesday, November 26, 2014

Epilepsy Awareness Month Day 26: Epilepsy Rant

I am usually a positive person but today has been especially trying. I realize tomorrow is Thanksgiving and I should be espousing everything I am grateful for.  I will. 

Just not today. 

Today I am on a rant. 

Epilepsy sucks.  It is more insidious than people realize.  People who have seizures lose minutes, hours, and days of their life.

Epilepsy has no regard for schedule. Does it care tomorrow is Thanksgiving?  Absolutely not.

Epilepsy changes without warning.  I am used to Robert’s Complex Partial Seizures. He averages 20 – 25 seizures a month. This month, his seizures are out of control.  He has had not one but two days of non-stop cluster seizures (totaling at least two dozen each day).

When it happened earlier this month, we thought maybe he was super excited about our trip to Disneyland.  We (meaning me and his neurologist) couldn’t figure out any other reason for the unusual cluster. I chalked it up as anomaly.

Then it happened again – three weeks later. 

Are his seizures changing?  Are we moving from one or two every few days with an occasional cluster of 3 – 4 to a few dozen in a day? Will this become the norm? 

Who knows!  Because epilepsy is unpredictable and in a third of people with epilepsy it is never controlled.  Never.

Epilepsy kills. Yes, it kills.  Fifty thousand people die annually in the United States from epilepsy (prolonged seizures, SUDEP, and accidents caused from seizures).


Epilepsy changes lives. A woman – a kind, wonderful woman – loses her daughter and mother to seizures. A mom takes a low-paying job because it allows the flexibility to support her son who has epilepsy follow his dreams. A mom advocates for the legal use of CBD after seeing her son’s epilepsy continue to be uncontrolled. A man and his wife care for their disabled son and have sat bedside with him numerous times when he was on the brink of death. A confident, empowered woman becomes self-conscience because the of damage epilepsy medications have done to her teeth.

Let's do more research to find a cure for epilepsy.  Let's do more advocacy.

Let's do more ranting. 

1 comment:

Leslie said...


The stat "1 every 10 minutes" drives it home for me better than any other stat. That could be me. It might be me. Perhaps tonight. Perhaps tomorrow.

A few months ago we'd thought we'd found the right combo of meds. It worked great.

For three weeks.

Now I've had to add half a dose of my rescue med (Ativan) twice daily. Yeah, it works...and it forces me to sleep for 3-4 hours every afternoon. So I skipped it this morning. Balancing the risks and benefits,and all that.

So yes, let's keep advocating and ranting. But for you,Rocert, and Richard, not tomorrow. Just be thankful. And eat.

With much love.