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6 ‘truths’ about epilepsy that are actually total myths

Today marks International Epilepsy Day.

shutterstock_267014078 Shutterstock / Sohel Parvez Haque Shutterstock / Sohel Parvez Haque / Sohel Parvez Haque

WOULD YOU KNOW what to do if you witnessed someone having a seizure?

Today marks International Epilepsy Day, an event which aims to promote epilepsy awareness around the world in more than 120 countries, increasing visibility of epilepsy and helping the general public to understand more about an often hidden condition.

Here’s the truth about some of the most common myths surrounding epilepsy…

Myth 1: An ambulance is necessary for all seizures

zhen-hu-340739 Unsplash Unsplash

It might be our automatic response when we witness someone having a tonic-clonic seizure to dial 112, but what you should actually be using your phone for is to note the time that the seizure started.

A tonic-clonic seizure is a convulsive seizure involving loss of consciousness, muscle-stiffening and the person falling to the ground followed by jerking movements. If the seizure is injury free, ends in under five minutes, and is not the person’s first seizure, you may not need to phone an ambulance.

However, here are the situations in which you should definitely phone 112:

  • If the seizure continues for longer than five minutes or if the person has multiple seizures in a row
  • If it’s the first time they’ve had a seizure
  • If they’ve injured themselves during the seizure
  • If you’re in any doubt about the individual’s safety

Myth 2: Every seizure involves convulsions

Though we may associate epilepsy with tonic-clonic seizures (involving convulsions), the reality is that there are over 40 different types of seizures. Put simply, a seizure happens when ordinary brain activity is suddenly disrupted, causing an internal electrical storm.

It’s this sudden, unexpected loss of control that accounts for many of the misconceptions about epilepsy. The area of the brain affected determines the type of seizure. Focal seizures, for example, can cause blank stares, rapid blinking or intense emotional or physical sensations.

Myth 3: Seizures can’t be life-threatening

shutterstock_473967136 Shutterstock / 895_The_Studio Shutterstock / 895_The_Studio / 895_The_Studio

Thankfully, the majority of time seizures pass without incident. Unfortunately in some are cases, Sudden Unexpected Death in Epilepsy (SUDEP) can occur. Staying seizure-free through medication and management is the best way of reducing risk of SUDEP, which is most common in young adults, particularly men. Though the causes are not fully understood, it may be due to cardiac, respiratory or autonomic nervous system failure.

Epilepsy Ireland estimates that there are up to 130 epilepsy-related deaths each year in Ireland. Around half are due to SUDEP, while the others are caused by accidents, injury and drowning – and in rare cases, prolonged seizures lasting over five minutes (known as Status Epilepticus).

Myth 4: Flashing lights must be avoided

Flashing, strobing or flickering lights are commonly associated with epilepsy, but the truth is that only a tiny percentage  (three to five per cent) of those with epilepsy are affected by photosensitivity.

Even the majority of those who are photosensitive can still watch television and use computers without significant difficulty. Find out more about photosensitivity triggers here.

Myth 5: You should put something in the person’s mouth during a seizure

This dangerous myth stems from the mistaken belief that during a seizure people can swallow their tongue or suffocate. It’s physically impossible for someone to swallow their tongue. By inserting something in their mouth, you could damage teeth, puncture gums or even potentially break someone’s jaw – along with the risk of being bitten yourself.

Instead, remove objects from around the person to prevent injury and gently put them in the recovery position while protecting their head when the seizure has stopped. Find more seizure first aid information here.

Myth 6: Epilepsy stops you from leading a fulfilled life

raghu-nayyar-454320 Unsplash Unsplash

Most people with epilepsy do not feel deterred by it and many achieve their goals in both their personal and professional lives. However it is important to note that epilepsy is an individual condition and can be a major disability for some.

Stabilising or eliminating the occurrence of seizures through medication and management means that for around 70 per cent of people, the impact of epilepsy can be minimised.

Epilespy Ireland’s vision is to achieve a society in which no person’s life is limited by epilepsy. Today also marks the beginning of Rose Week, raising vital funds for Epilepsy Ireland. For more information visit www.epilepsy.ieIf you are interested in volunteering by selling roses, please email fundraising@epilepsy.ie or call 01 4557500. Support the Rose Appeal by texting the word ROSES to 50300, and 100% of your €4 donation will go to Epilepsy Ireland, or €3,60 if VAT is charged. Service provider: Like Charity. Helpline 076 680 5278.

Read more: ‘If I miss my meds, it’s a matter of hours before I have a seizure’: Rick O’Shea on life with epilepsy

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