Wednesday, 9 December 2015

Living with Epilepsy




Well folks that is my 10 week course completed.  I am feeling a little lost tonight.  Good news is that they are continuing with another course in January so I am already signed up and ready to go again.  There is absolutely no doubt in my mind that the course and the participants have inspired me and my creative writing.  I feel I can accomplish anything right now!

If anybody is interested in the course feel free to email me at hayleighm26@gmail.com (this email address is specifically for my writing) and I can answer any questions you may have.

My task for the final week is to create and write a short script.  Fortunately I have a few weeks to get this done.  The only script I have ever written was back at High School (with help from my friends) when we did a production of the Wizard of Oz, therefore the story was already in place and as I was overly familiar with the story it was not too difficult.  I have started so hopefully the ideas will soon bleed from my brain.

In the penultimate week of the course we had to create an article.  This should be informative, factual and personal to yourself, with a view to providing information whilst still making a connection with the reader.

Six years ago I was diagnosed with Epilepsy, here is my article.

Living with Epilepsy
by Hayley Mars


Retro graphic of a brainThis is an article written not by any medical professional but by me a person who suffers with epilepsy and who would like to tell my story to help others who may now or in the future be diagnosed with epilepsy.

What is Epilepsy?

Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness and/or convulsions, associated with abnormal electrical activity in the brain.  Epilepsy is usually diagnosed after a person has had more than one seizure.

I attended my daughter’s primary school for the parents SATS meeting.  It was March 2009,  a Tuesday evening.  There were approximately 70 mothers and fathers sat in the hall listening to the Year 6 teachers explain the SATS procedure.  My last recollection was the teachers talking to us about the Science SATS and then the next thing I was waking up on the school hall floor, confused and not really aware of where I was apart from recognising I was in a school hall. The paramedics, my mother and brother were walking towards me.  This was my first grand mal seizure.

I was told afterwards, by another parent, that I turned and was looking directly at them but I did not appear to focus, I appeared vacant.  I started to jerk (convulse) and fell forwards to the floor from my chair.  I continued to convulse whilst on the floor and the hall was cleared, an ambulance was called and my mother was also called.  I was apparently unconscious for approximately 3 minutes.  However I lost about 40-50 minutes.  Fortunately there were two parents at the meeting who were nurses and who attended to me.  They also made it clear to the paramedics that I had not fainted, but that I had had some sort of a seizure.

After this incident I was referred to a Specialist and he recommended  an MRI scan and an EEG scan. This was to determine the extent of my condition and to ensure there was no underlying condition causing my seizures.  After the scans my mother and I attended hospital and spent a great deal of time talking to the specialist about everything that had gone on over the years.  He asked me many questions and he also asked my mother many questions after which he diagnosed me with Temporal-lobe Epilepsy.  I have been taking Keppra since diagnosis (1000mg a day) and have been seizure free ever since.

There are over 40 types of epilepsy so knowing somebody with epilepsy does not really tell you very much about their epilepsy and the type of seizures they have.  Epilepsy is not that simple. Doctors gather lots of different information, as they did with me, to assess the causes of seizures. They will look closely at your medical history.  If you have had two or more seizures that started in the brain you may be diagnosed with epilepsy. Getting a diagnosis is not always easy as there is no single test that can diagnose epilepsy.  There are also different things that can trigger a seizure.  With me it appeared to be stress and sleep-deprivation,

Types of Seizures

There are many different types of epileptic seizures, however they are divided into two main types, focal seizures (also called partial seizures) and generalised seizures. Epileptic seizures always start in the brain.  The brain has two sides called hemispheres. Each hemisphere has four parts called lobes. Each lobe is responsible for different things such as vision, speech and emotions.

In my case prior to my grand mal seizure, I had been suffering from simple focal seizures (partial seizures) for many years, I just didn’t know it.  My earliest memory was whilst pregnant in 1997.  At that time I thought it was the baby turning.  I never suspected I had epilepsy it never occurred to me.  Until such time as the doctor gave me my diagnosis I was still explaining my symptoms away as funny turns due to stress, lack of sleep and working too hard. These SFS varied in frequency, intensity and awareness.

Here are examples of Simple Focal Seizures  (SFS)

Temporal lobe simple focal seizures may include:
  • a ‘rising’ feeling in the stomach (like the feeling you get on a fairground ride where you 'leave your tummy at the top')
  • deja vu (feeling like you've 'been here before')
  • getting an unusual smell or taste
  • a sudden intense feeling of fear or joy.

Frontal lobe simple focal seizures may include:
  • a strange feeling like a ‘wave’ going through the head
  • stiffness or twitching in part of the body (such as an arm or hand).

Parietal lobe simple focal seizures may include:
  • a feeling of numbness or tingling
  • a sensation that an arm or leg feels bigger or smaller than it actually is.

Occipital lobe simple focal seizures may include:
  • visual disturbances such as coloured or flashing lights
  • hallucinations (seeing something that isn’t actually there).

When I was questioned by the specialist about my ‘funny turns’ I literally described Temporal lobe SFS (as above) word for word.  Despite, at that time, epilepsy not being mentioned or considered by me.  Once diagnosed I rushed home and did what all newly diagnosed people do and googled it.   

Generalised seizures

Generalised seizures affect both sides of the brain at once and can happen without warning. The person will be unconscious (except in myoclonic seizures), even if just for a few seconds. Afterwards they will not remember what happened during the seizure.

Tonic clonic (convulsive) seizures (sometimes called grand mal)

These are the seizures most people think of as epilepsy.

At the start of the seizure:
  • the person becomes unconscious
  • their body goes stiff and if standing up they usually fall backwards
  • they may cry out
  • they may bite their tongue or cheek.

During the seizure:
  • they jerk and shake (convulse) as their muscles relax and tighten rhythmically
  • their breathing might be affected and become difficult or sound noisy
  • their skin may change colour and become very pale or bluish
  • they may wet themselves.

After the seizure (once the jerking stops):
  • their breathing and colour return to normal
  • they may feel tired, confused, have a headache or want to sleep.

There are of course other types of seizures including absences (sometimes called petit mal) tonic seizures, atonic seizures, myoclonic seizures and clonic seizures.

I am fortunate to have only ever had one grand mal seizure (that I am aware of) and after talking to support groups and reading other people's stories some sufferers can experience repeated seizures on a daily basis. It has made me realise how much epilepsy affects and controls their lives.  Over 65 million people worldwide suffer with epilepsy.  This is treated mainly by medication and indeed over 70% of people with epilepsy, who control it with medication, remain seizure free and whilst you cannot cure epilepsy you can control it.  In some cases where medication fails to control epilepsy another option is brain surgery.  This usually involves removing a specific area of the brain which is thought to be causing the seizures.

There are many different side effects to taking medication, as there is with most medication.  In my case it was mainly tiredness, which is a common side effect of Keppra.  Obviously six years down the line I have become accustomed to this and make sure I get plenty of sleep (and a few naps, when I can).  I did initially suffer weight loss, which is another side effect, however I do think that this was more to do with not being permitted to drive for 12 months and therefore having to use my legs more, rather than my medication.

One of the groups that I have found genuinely helpful and supportive is Epilepsy Support who you can find on Facebook. They are not medical professionals but are working tirelessly to raise awareness of epilepsy by encouraging people with epilepsy, or care for family with epilepsy, to share their stories and offer each other support. https://www.facebook.com/epilepsysupports/info/?tab=page_info.

References: http://www.epilepsysociety.org.uk/

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