Unraveling the stigma

Natasha tells the truth about epilepsy and her experience with the Seizure Investigation Unit and brain surgery

Natasha Wasmuth in the Seizure Investigation Unit

One of the many frustrations

of my disease is the

general lack of knowledge

of epilepsy and although

it is complicated, knowing

what a person with epilepsy

is experiencing can take

away much of the stigma

and fear.

The following is a brief

outline of one of the most

common types, known as a

‘simple partial seizure’ and

what the patient could be

experiencing.

Simple partial seizures,

also known as focal seizures,

occur in one area of

the brain (commonly the

hippocampus, main area

of memory, learning, and

emotion), lasting between

10 to 40 seconds with consciousness

fully intact.

Of the more than 40 seizure

types they play a big

part in the cause of stigma,

as physical movements, reaction

to odd sensations

and slurred speech can

seem one is intoxicated,

on drugs, or ‘out of it’.

Simple partials are medically

categorized into four

groups:

• Motor seizures: These

cause a change in muscle

activity. A person may have

abnormal movements such

as jerking of a finger or

stiffening of part of the

body. These movements

may stay on one side of

the body (opposite the affected

area of the brain) or

extend to both sides. They

may cause weakness, which

can affect speech and coordinated

actions such as

hand movements; blinking;

or twitching of the face.

• Sensory seizures: These

cause changes in any one

of the senses. People with

sensory seizures may smell

or taste things that aren’t

there; hear clicking, ringing,

or a voice when there

is no sound; feel a sensation

of ‘pins and needles’;

or like they are floating.

They may have visual hallucinations

of things that

aren’t there (ie: a scene with

people), or experience distortions

of true sensations

(ie: a parked car is moving

away, or a person’s voice is

muffled when it’s actually

clear).

• Autonomic seizures:

These cause changes in the

part of the nervous system

that automatically controls

bodily functions.

This may include strange

or unpleasant sensations in

the chest, head, or stomach

(known as epigastric

rising); changes in heart

rate or breathing; sweating

or flushing (face and/

or neck turns red and hot);

or goose bumps.

• Psychic seizures: These

seizures change how people

think, feel, or experience

things. They may have

problems with memory,

speech, or understanding

spoken or written language.

They may feel emotions

like fear, depression,

or happiness with no outside

reason. It is common

to have feelings of déja

vu (“I’ve been through

this before”) or jamais vu

(“This is new to me”, even

though the setting is really

familiar). If the area of the

brain involved with memory

is affected, there may

be internal visual images

of people and places from

the past.

The majority of patients

with simple partials experience

at least two of the

four types, and in the same

order.

Doctors call this type of

seizure behaviour ‘stereotyped.’

Learning the order,

timing, and likelihood of

further seizure activity is

paramount to knowing

your epilepsy and the best

measures to follow.

Prior to brain surgery I

experienced thousands of

simple partials.

They began with an internal

image of a woman’s

face on a black background

(“I‘ve seen her before, I

know her”, though she

was a total stranger and

post-seizure I couldn’t describe

her), followed by

epigastric rising, flushing

and intense fear.

Though consciously stopping

any seizure is not possible,

that is often irrelevant

to the patient.

Like a subconscious distraction,

my attempt to

re-focus neuronal activity

was rubbing fingers against

thumbs similar to repetitive

squeezing.

If activity reached one

minute without peaking, I

lost ability to control motion

and it evolved into a

tonic clonic (grand mal)

seizure.

In 2013, the last tonic

clonic seizure began in my

sauna.

I got out before losing

consciousness (when a

simple partial evolves it is

referred to as an ‘aura’ – a

warning), though my face

was injured due to repetitive

strikes against the bottom

of the glass door.

Four weeks later surgery

took place at Vancouver

General Hospital (VGH),

and part of my left temporal

lobe was removed.

It was a success, one that

wouldn’t have been possible

without the VGH Seizure

Investigation Unit (SIU).

Of the 32,000 adults with

epilepsy in BC, more than

7,000 are possible surgery

candidates, yet the SIU has

only two beds.

From clinic consult to SIU

my wait was 14 months and

during that time I had more

than 100 seizures.

It has been 38 years since

the SIU was implemented

in 1979 and though epilepsy

diagnosis is steadily on

the rise there are still only

two beds, making B.C. one

of the most underfunded

provinces in researching and

fighting this life-threatening

disease.

2017 marks year four of

epilepsy Quesnel’s (eQ) endeavour

to help the VGH

Epilepsy Clinic raise funds

for beds 3 and 4, please join

us!

Purple Day in Quesnel is

Friday, March 24 at various

locations.

See full list of participating

businesses on the

big purple posters with

events leading up to Global

Purple Day for Epilepsy

March 26, including a

night with Latin superstar

Alex Cuba at The Occidental,

March 2

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