Take Free Sensory Profile


What I Wish People Knew About Epilepsy


Epilepsy is a disorder that is full of assumptions and misconceptions due to media representation. Most people when they think of seizures think of someone falling to the floor and shaking.

To be honest, I don’t know all that much about epilepsy myself. However, we have people who have epilepsy in the community. Also one of my best friends son is epileptic. So I decided to ask them!

This is what they wish people knew about epilepsy.

1. Not Everyone Will Drop To The Ground and Shake!

…There is more than one type of epilepsy. We don’t all drop to the ground shaking uncontrollably. There are actually lots of different types of seizures. We don’t all get warnings, some seizures come out of the blue!
– Carolyn Allen

The Different Types Of Seizures

Generalised Onset Seizures – These seizures start in both hemispheres of the brain simultaneously (at the same time).

There are many types of generalised onset seizures, these include:

  • Tonic-Clonic Seizure– The muscles suddenly stiffen and the person can fall if standing. Jerking will follow and the person may bite their tongue or become incontinent.
  • Absence Seizure– These are most common in children. The person will “go blank” for a time, during this time they may stare and their eyelids may flicker. This type of seizure is not normally noticed.
  • Aonic Seizure– This is when the body suddenly stiffens briefly and the person may fall when standing.
  • Atonic Seizure– The person has a sudden loss of muscle tone and it causes the person to fall.
  • Myoclonic Seizure– This is when there are brief, shock-like jerks of muscles, it involves the upper body and can occur by themselves or in clusters.

Focal Onset Seizures

Unlike Generalised Onset Seizures, only one part of the brain is affected during a focal seizure. The signs and symptoms will depend on the part of the brain where the seizure occurs. Signs and symptoms can vary from person to person.

The two main types of focal onset seizures are:

  • Focal Aware Seizure– The person remains completely aware but can have unusual sensations or movements, such as pins and needs, unpleasant smells or taste, hallucinations, nausea, déjà vu or unusual emotions. This type of seizure may progress to a different type, so these are usually called ‘auras’.
  • Focal Seizure (Impaired Awareness)– The conscious state of the person changed and they can appear confused or vague, they might do strange and repetitive actions like playing with clothes, making chewing movements or uttering unusual sounds. These seizures usually last one or two minutes but the person can be confused or drowsy for a few minutes afterwards. They might have no memory of the seizure or the events before and after it.

2. Epilepsy Is a Life-Threatening Condition

“… At first, it used to really upset me about how flippant some people can be when talking about epilepsy. I once had a meltdown and sobbed when a lady I knew asked me what condition my girl had and then replied “oh is that all” when I said epilepsy. What she didn’t know was about the countless times my girl was blue lighted to A&E, intubated and placed in high dependency. Some people don’t understand that epilepsy is life-threatening, or that your world is turned upside-down by daily seizures, that you are always on edge and on seizure watch.”
– Carolyn Watson

A seizure is not always a medical emergency. Usually, the person can carry on with their daily life after a certain period of time.

However, a seizure can become a medical emergency if:

  • The seizure lasts longer than five minutes (So they should always be timed!)
  • There is prolonged confused after a seizure lasting over 10-15 minutes.
  • The person is non-responsive after a seizure.
  • If injury during the seizure.
  • First time having a seizure.
  • If there is a major change in the type of character of the seizure from the person’s usual seizure pattern.

3. Epilepsy and SPD

“More general awareness and understanding of seizures types. Side effects. Links to SPD. Because our daughter has epilepsy, her processing time is slower. This affects everything she wants to do in a day, speech and language, concentration, memory. It’s more than just seizures.”
– Gurvinder Mashiana Shergill

People with Epilepsy can also suffer from Sensory Processing Difficulties (SPD). This is due to the fact that epilepsy can cause a slower processing time. This can affect one of the 7 senses. People with SPD can be sensory seekers or avoiders, depending on their sensory processing.

*To find out more about Sensory Processing Difficulties follow the link below:*


4. Epilepsy Can Occur At Any Age

Many people assume that a lot of people who have epilepsy are born with it. However, this is not the case, it can happen at any stage in life for a variety of reasons.

The Most Common Causes of Epilepsy

  • Genetic (Inherited)
    If epilepsy is common in one or both parents, then their child can develop the disorder and will have it from childhood all through their lives.
  • Genetic (Not Inherited)
    In this case, epilepsy is not inherited, this may be because there is no family history of epilepsy. Instead, it is caused by a new change in the person genes.
  • Structural (Symptomatic) Changes
    This is when epilepsy is caused due to the brain not developing properly. Or if the damage is caused to the brain by brain injury, infections like meningitis, a stroke or tumour.
  • Structural Changes Due To Genetic Conditions
    Some genetic conditions such as tuberous sclerosis (a rare condition that causes growths in the brain), or neurofibromatosis (a condition that can cause growths on the nerves) can both affects the brain and cause epilepsy to develop.

5. There Are Different Reasons For Seizures

Seizures can develop for many reasons, below are some of the most common reasons, categorised by age.


  • Brain Malformations.
  • A lack of oxygen during birth.
  • Low levels of blood sugar, blood calcium, blood magnesium or other electrolyte problems.
  • Inborn errors of metabolism.
  • Maternal Drug Use

Infants and Children

  • Fever
  • Brain Tumour
  • Infections

Children And Adults

  • Congenital conditions (Down’s syndrome; Angelman’s syndrome; tuberous sclerosis and neurofibromatosis)
  • Genetic factors
  • Progressive brain disease
  • Head trauma


  • Stroke
  • Alzheimer’s disease
  • Trauma


So that’s our list of things our community wished people knew about epilepsy. I hope that it has given you some new insights going forward. We also hope it has helped broaden your understanding of the disorder.

A massive thank you to our contributors for helping give us some insight when writing this blog. They are:

Brooke Waters
Carolyn Allen
Gurvinder Mashiana Shergill
Carolyn Watson

Popular links

Sensory Profile