Checking Out (With My MS) Seizures

I'm aware enough to know that I've been "here" before. "The" concerned look(s) focused on me, the headache, extreme tiredness, and feeling confused are all too familiar.

It feels as if I have somehow missed something for a period of time and then hearing, more often than not, my son or daughter saying "Mom? Mommy, are you here? It's ok. You had a seizure."

My personal experience

There are times, more often than not, I think that I knew I was possibly going to have a seizure. I felt 'off' or felt 'it' coming. 'It' being pretty much an eerie and indescribable feeling, but if I had to try, I would say something like a feeling like the space around me is different or the easier feeling to explain, a random wave of dizziness that brings me pause. 

Sometimes, I provide quite the entertainment, I'm told, with the quirky, off-the-wall commentary I mutter - as I make my way 'back' - of which I have no recollection of. But it's even amusing to me to hear when recanted. 

In droll wonderment, I think "I said that, huh?" or "Oh my, where'd that come from?" Because the fact is, I have no idea of where I am during these periods of when I'm 'awake' yet not 'present'.

My grand mal and focal seizures

My very first seizure, and only one since, both occurred when I was asleep and they were grand mal ‐ a type of seizure that involves a loss of consciousness and violent muscle contractions.

Primarily, I experience those that I refer to as 'checking out' because I 'slip away' for several seconds to a minute (or two?). This includes staring blankly into nothing while unconsciously doing repetitive movements such as smacking my lips, blinking, making grunting and/or gulping sounds - with no memory of what occurred during this time. The aforementioned characteristics including not speaking or having the ability to speak, but not particularly making sense or responding to others appropriately, are known as focal seizures. After I have 'returned', I experience confusion and a headache. I then fall into an hours-long deep sleep with grogginess and some fatigue and weakness after waking.

A clinical look...

I have described a personal insight of my 'checking out' experience, but medically, what is taking place is I am passing through the beginning (Aura), middle (Ictal) and end (Post-Ictal), of the three stages of a seizure.

That indescribable feeling, the 'it' feeling I mentioned? That's the Aura stage that happens right before a seizure starts and is a warning that it's about to happen.

The symptoms come on quickly and may include a feeling of deja vu (a sense that something has happened before when it hasn’t), jamais vu (a feeling that you’re seeing something you know well for the first time), vision problems, dizziness, headache, nausea, or panic.

Intense electrical changes happen in the brain during the middle or Ictal stage of the seizure. Some of the common symptoms during this phase may include trouble speaking, drooling, loss of muscle control, twitching, repeated movements like lip smacking or chewing which are actually called automatisms, loss of awareness, feeling confused, memory lapse, and trouble hearing.

As the seizure ends, the Post-Ictal stage occurs - this is the recovery period after the seizure. During this final stage, your brain is trying to get back to normal. Your body begins to relax. The physical aftereffects can commonly include fatigue, headache, loss of bladder or bowel control, lack of consciousness, confusion, fear and anxiety, trouble walking, body weakness, and sore muscles - some of what I undergo.

The impact seizures have on lifestyle

Seizures are the result of abnormal electrical discharges in an injured or scarred area of the brain. I normally have focal seizures which include impaired awareness and are the most common type with MS.

I am prescribed an anticonvulsant medication, Levetiracetam (Keppra), which is meant to decrease abnormal excitement in the brain to manage my seizures. Although I can still check out when emotionally charged, stressed, exhausted, or in pain. I'm present more often than not...I think.

Editor’s Note: We are extremely saddened to say that on December 2nd, 2024, Dianne Scott passed away. Dianne’s advocacy efforts and writing continue to reach many. She will be deeply missed.