Living with Epilepsy

It has been 17 years since my last epileptic seizure.

Epilepsy is a condition that affects the brain and causes seizures. When a person has a seizure, the brain experiences a sudden influx of electrical activity that affects how it works for a period of time.

The condition can begin at any age but usually starts in childhood or after the age of 60. It can last a lifetime or get better over time but most sufferers need to stabilize the condition with medication.

I do.

Here are some interesting epilepsy facts:

  • Epilepsy is the 4th most common neurological disease 
  • One in 20 people will have a one-off epileptic seizure at some point in their life (although this does not necessarily mean that they have epilepsy)
  • One in 50 people will have epilepsy at some time in their life (not everyone with epilepsy will have it for life)
  • Around 87 people are diagnosed with epilepsy every day
  • Over 500,000 people in the UK have epilepsy. That’s about one in every 100 people
  • There are around 60 million people with epilepsy in the world
  • Up to 5% of people with epilepsy will be affected by flashing lights (called photosensitive epilepsy)
  • In the US, 1.2% of people have active epilepsy

Epilepsy is life changing…

I began to have seizures when I was 32 years old.

It was a big shock, it came out of the blue and changed my life in lots of ways. I had my first episode during the night. My husband had woken up when I was ‘fitting’ and called an ambulance.

From that moment, my life changed in a lot of ways.

There was the loss:

  • Driving license
  • Independence
  • Confidence

There was the fear:

  • The unknown, we didn’t know anything about the condition
  • We didn’t know why I had suddenly developed it at the age of 32
  • Was I still going to be able to be a good mum and wife?

There was the embarrassment:

  • The loss of bodily functions when having a seizure
  • Having to tell people I had the condition and couldn’t do certain things
  • I had to ask for help

I knew absolutely nothing about epilepsy and I didn’t know anyone with the condition so I had to educate myself and my family too. It wasn’t nice for my children to watch but they coped with it really well.

There are different forms of epilepsy, over 40 according to the epilepsy Society. Find out more…

Here are the main ones:

Semi-partial or ‘auras’ – you are awake during the seizure and normally experience:

  • A ‘strange’ feeling, it’s hard to describe
  • A ‘deja vu’ moment
  • Twitching and stiffening in the body
  • A weird taste or smell

I had a year of partial seizures presuming they were a form of a migraine.

Complex partial  or ‘focal’ seizures – normally you can’t remember the seizure happening and you are non-responsive at the time:

  • You lose all sense of awareness
  • You make noises
  • Rub your hands together or a bodily action like that
  • Fiddling with objects

Tonic-clonic seizures otherwise known as ‘Grand mal’ seizures:

  • You lose consciousness
  • Your body jerks and sometimes you lose control of your bodily functions
  • There is a difficulty with breathing and sometimes the lips go blue

Afterwards, there is normally a really bad headache and memory loss. I had grand mal seizures. They were exhausting, I normally lost control of my bodily functions and ended up with a really bad headache.

Absences – otherwise known as ‘petit mal’:

  • Lose awareness of surroundings for a little while
  • Stare blankly into space as if daydreaming
  • Flutter the eyelids
  • Make jerky movements

Myoclonic seizures:

  • Your body suddenly starts to twitch and jerk like you’ve had an electric shock
  • They normally last a few seconds and you are aware that you are having them

Clonic seizures:

  • The body shakes and jerks like a tonic-clonic seizure but you don’t go stiff at the start
  • They last a few minutes and you might lose consciousness

Tonic seizures:

  • Muscles go stiff
  • You might lose your balance and fall over

Atonic  seizures:

  • Your muscles start to relax and you fall to the ground
  • They are normally brief episodes and you get up again

Status epilepticus:

  • This is the name for any seizure that lasts a long time
  • You don’t regain consciousness in between seizures
  • It is a medical emergency

Help and medical care…

The Angel effect…

From the moment that I opened my eyes 17 years ago, after my first grand mal seizure, I have experienced excellent medical care.

It started with an ‘angel’ at my bedside (not a real angel, my ambulance man).

We are unsure how long my first grand mal seizure lasted because it happened in the night and my husband woke up to find me shaking and then going stiff as a board.

Apparently, I had gone very white and my lips were blue. His initial thought was that I was having a heart attack. He called an ambulance and as I became conscious I remember seeing a really handsome ambulance man standing over me.

During my journey to hospital, the ambulance man was comforting and caring and after the doctors had attended me in hospital, he returned to the room that I was in to check up on me. He was lovely:)

Apparently, in situations like that, when someone is potentially saving your life (dramatic) they become an angel in your eyes – my ambulance man was my angel.

The Neurologist…

My neurologist was a lovely man, approaching retirement and extremely knowledgeable. He went above and beyond to help me and even gave me his home phone number explaining that we could call him at any point if we had any concerns. He prescribed me the epilepsy medication ‘Epilim’.

Find out more about the drug  Epilim.

I felt confident that I would be OK because the neurologist explained everything in great detail and my test results had come back clear. I had an MRI and the specialists couldn’t see any reason for the seizures.

In the end, their conclusion was that the seizures were triggered by stress. A stress that I had no control over it wasn’t financial or relationship stress.

110 days…

At the time that I had my seizures, you weren’t allowed to drive for a year after your last seizure. For 110 days I looked at my lovely car on the driveway knowing it wouldn’t be too long before I got my independence back again.

But it wasn’t meant to be…

One day, my husband came home from work early and found me at the bottom of the stairs. He called the doctor’s surgery and our doctor came straight to the house. I had experienced another grand mal seizure and thankfully only had bruises on my back from falling down the stairs.

I had excellent care from the doctor and went back to the Neurologist.

The next medication they put me on was Lamotrigine – 200mg twice a day.

It worked and I have been seizure free for 17 years!

The side effects I have from taking Lamotrigine:

  • Memory: Sometimes I’m amazed if I remember where I live or if I have children, my memory is awful
  • Sleep: I don’t sleep well – it’s disturbed and minimal
  • Brain: It doesn’t get the day off. I literally can’t stop thinking!
  • Energy: Never lethargic, enthusiastic, energetic, confident and fidget
  • Appetite: Big, I’m normally always hungry
  • Activities: There are certain sports or activities that you are restricted with such as bumper cars, roller coasters, swimming on your own, dancing in nightclubs with strobe lights etc.. etc.. Thankfully it doesn’t affect me clothes shopping!

Maybe one day I will be on the famous list!

Whilst doing research for this article I came across a list of famous people that had or have epilepsy, it’s an interesting list. 

I was surprised:

  • Agatha Christie
  • Lewis Carol
  • Richard Burton
  • Theodore Roosevelt
  • Alexander the Great
  • Michelangelo
  • Vincent Van Gough
  • Julius Caesar
  • George Gershwin
  • Charles Dickens
  • Elton John
  • Neil Young
  • Danny Glover
  • Prince
  • Rik Mayall
  • Susan Boyle
  • Martin Kemp
  • Napoleon Bona Parte

There is plenty of support at hand…

There is plenty of help out there for people with epilepsy, starting with the Epilepsy Society.

The Epilepsy Society is the UK’s leading provider of epilepsy services.  Through their cutting-edge research, awareness campaigns, information resources and expert care, they work for everyone affected by epilepsy in the UK.

Their research is driven by the desire to understand what has caused epilepsy in each individual person, to be able to identify the best therapy from the outset and to make this expertise widely available.

What’s next for me?

I will be on my medication for the rest of my life. There is a chance that if I weaned myself off the tablets I might not have another seizure but I’m not prepared to take the risk. At the moment I’m not aware of the long-term risks of taking my medication so why rock the boat.

What should you do if you are with someone and they have an epileptic fit?

If you have been diagnosed with epilepsy and you want to ask me a question or tell us your story, contact us today.

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** The content on this site should not be used as medical advice, we are giving our readers information and insights. If you are concerned about your health or need medical advice please see your doctor. If you are struggling with any issues please talk to someone, don’t suffer in silence.