Epilepsy – Fact and Fiction

Epilepsy is one of the many invisible illness people can have. In fact it is said that one in every 103 people have the condition. Considering how many people have epilepsy, there is still a stigma and a lack of knowledge amongst people that don’t have or know any one with epilepsy.

I am a strong believer in trying to educate people that might not know that much about epilepsy. After all someone recently said to me knowledge is power. It is beneficial to learn about epilepsy as you never know when you might encounter some one with it.

Now I am not a doctor or an epilepsy specialist, a lot of this is my own knowledge that I have learnt over the years since I was diagnosed in my early teens.

Some of facts and myths are obvious to most people where as others are hopefully educating.

The myth: Epilepsy is a form of spiritual possession.

The truth: Although most people have long recognized that epilepsy is not a form of possession, some cultures still believe this. Epilepsy organizations are working hard to educate all people. Epilepsy is a medical condition, a disorder of the brain that causes sufferers to have recurrent seizures.

The myth: You are born with epilepsy. The cause is genetic.

The truth: Anyone can develop epilepsy at any time. Some people are born with it, whereas others have their very first seizure in middle age. While genetics can play a factor, there are other more common causes of epilepsy, such as head trauma, brain tumour or lesion and stroke. In most cases—roughly 70 percent—the cause of epilepsy isn’t known.

The myth: Epilepsy affects intelligence.

The truth: People with epilepsy on average have the same level of intelligence as those without epilepsy. Learning can be made more difficult if seizures are frequent, or if medication has very pronounced side effects, such as causing drowsiness and excessive fatigue. However, epilepsy typically does not cause lower intelligence. In fact, some very talented and brilliant people have epilepsy, including some pretty influential historical figures such as Sir Isaac Newton, Vincent Van Gogh, Ludwig van Beethoven, Agatha Christie and Napoleon.

The myth: People with epilepsy can’t work, excel at school, have children or lead normal lives.

The truth: You’ve probably guessed by now that having epilepsy doesn’t preclude someone from doing well at school, excelling in the workplace, having a family and leading a busy life. Epilepsy is a medical condition that can be managed and therefore people with epilepsy can often lead normal lives.

The myth: There are only two types of seizure—grand mal and petit mal.

The truth: In fact, there are more than 40 different types of seizures, grand and petit mal are old fashioned terms. Seizures can take many forms including a blank stare, involuntary movement, altered consciousness, a change in sensation or a convulsion. They can be split into 2 groups: Focal where one are of the brain is effected, Generalised where the whole brain is effected.

The myth: During a seizure, you can swallow your tongue.

The truth: it is impossible for someone to swallow their tongue during a seizure and therefore nothing should ever go into a person’s mouth during a seizure.

The myth: Seizures are always medical emergencies and you should call 999.

The truth: Actually, seizures are most often not medical emergencies and an ambulance is not always required. You should call 999, however, if: a seizure lasts five minutes or longer or repeats one after another without the person regaining consciousness in-between; it is someone’s first seizure; the person is injured during the seizure (through a fall, for example); the seizure happens in water; or the person is pregnant or has diabetes.

First Aid for Seizures (from Epilepsy Action website)

Tonic-Clonic seizures

The person goes stiff, loses consciousness and then falls to the ground. This is followed by jerking movements. A blue tinge around the mouth is likely. This is due to irregular breathing. Loss of bladder and/or bowel control may happen. After a minute or two the jerking movements should stop and consciousness may slowly return.

Do…

  • Protect the person from injury – (remove harmful objects from nearby)
  • Cushion their head
  • Look for an epilepsy identity card or identity jewellery
  • Aid breathing by gently placing them in the recovery position once the seizure has finished (see pictures)
  • Stay with the person until recovery is complete
  • Be calmly reassuring

The recovery position
Don’t…

  • Restrain the person’s movements
  • Put anything in the person’s mouth
  • Try to move them unless they are in danger
  • Give them anything to eat or drink until they are fully recovered
  • Attempt to bring them round

Call for an ambulance if…

  • You know it is the person’s first seizure, or
  • The seizure continues for more than five minutes, or
  • One tonic-clonic seizure follows another without the person regaining consciousness between seizures, or
  • The person is injured during the seizure, or
  • You believe the person needs urgent medical attention

Focal (partial) seizures

Sometimes the person is not aware of their surroundings or what they are doing. They may pluck at their clothes, smack their lips, swallow repeatedly, and wander around.
Do…

  • Guide the person from danger
  • Stay with the person until recovery is complete
  • Be calmly reassuring
  • Explain anything that they may have missed

Don’t…

  • Restrain the person
  • Act in a way that could frighten them, such as making abrupt movements or shouting at them
  • Assume the person is aware of what is happening, or what has happened
  • Give the person anything to eat or drink until they are fully recovered
  • Attempt to bring them round

Call for an ambulance if…

  • You know it is the person’s first seizure
  • The seizure continues for more than five minutes
  • The person is injured during the seizure
  • You believe the person needs urgent medical attention

I hope this post has managed to help educate someone.

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6 Comments

  1. October 5, 2017 / 8:33 am

    Love this post. My son developed epilepsy last year. My sister died after spending a week in a coma following a fit, my niece, nephew, a couple of cousins and 2 uncles all have epilepsy as well as a good friend of mine. And your right, considering how common it is, there’s not enough common knowledge. Will share this to death xxxx
    Leslie Rickerby recently posted…Fun ways to help your child learn tricky sight wordsMy Profile

    • lynseyward78
      October 5, 2017 / 8:46 am

      I agree, there isn’t enough knowledge. People don’t realise how common it is and how it affects people or how they can help if someone has a seizure. I can’t imagine how hard it is when your son developed epilepsy. It doesn’t change a person but I know it was hard going for my mum dealing with me after I had a fit. Not nice to witness. X

  2. October 5, 2017 / 9:00 am

    I didn’t realise how common it is. This is a really useful post and would have called for an ambulance if I encountered one. #blogtober17
    Bear and Cardigan recently posted…Learning Through Messy PlayMy Profile

  3. October 5, 2017 / 11:10 am

    This is such a useful post – I didn’t know half of this info! Thanks so much for sharing.

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