Seizure Freedom Is A Funny Thing

A quick intro to Clair:

  • Location: South London, UK
  • Profession: Occupational Therapy Assistant
  • Also: Founder of, and Accredited Volunteer at Epilepsy Action
  • Favourite food: Roast beef and Yorkshire pudding
  • Favourite activity: Exploring outdoors with her kids
  • Favourite singer: Ed Sheeran (at the moment!)
  • Favourite book: Elephant Girl
  • Greatest inspiration: Helen Keller

Random Fact: “I used to ski race at kids morning with a girl who went on the be on the Great British ski team!”


Seizure freedom is a funny thing, from the moment you are told by your doctor “you have epilepsy“  it becomes the ultimate goal.  Life revolves around drug choices, lifestyle changes even surgery all striving for seizure freedom, for a normal life again.

I remember waking up from so many seizures saying “now I have to start all over“ and no one helping me at that moment could understand.  They see the end of that seizure as their goal, that I am “better” when I am fully conscious and physically recovered.  But for me the seizure itself is less important, it’s the huge set back in seizure freedom that it represents that hurts more.

No one really understands this concept until you are counting down the days to that magical seizure-free year when you get your driving licence back and suddenly don’t seem such a risk to everyone around you.

But what does seizure freedom really feel like? Is it the ultimate goal? Does life just return to normal?  I hate to shatter the dream but unfortunately, it’s not quite that easy.

Please don’t get me wrong seizure freedom is amazing, being able to drive again, being able to apply for jobs without having a huge occupational health interrogation, not having to worry about having a seizure every day.  These things are amazing, and I am so thankful that currently I am four years seizure free.

But I have been two and half year’s seizure free before and then a tonic clonic seizure has stolen all that happiness.  And the longer you go seizure free the more choices you have to make that will be shattered if you do have a seizure.

Do I take a job that if I have a seizure I will lose or at least will be limited in?  Do we move house to a better area for schools but worse for public transport?  Do I sign my kids up for clubs that I need a car to get to?  The impact of a seizure isn’t just on me anymore but my kids as well.

Everyone says you should live your life to the full but it’s not always that easy when there is so much to lose if you chose to change your life so that you are reliant on that seizure freedom.

And there are so many threats to seizure freedom, you could forget a dose of your medication and have a seizure, easily done when seizures aren’t a daily threat and you are trying to “get on with life”.

You could have a tummy bug and can’t keep your medication down, or take another medication for another problem that interacts with your meds and causes a seizure.  Then there is travelling and jet lag, running marathons, high temperatures, having a drink or two or three… how much can you stress your body before it causes a seizure… whatever the cause of the seizure everything is reset, and you lose everything you have gained from the previous seizure freedom.

On top of all this pressure to stay “seizure free“ and live life to the full, you also start to feel like a fraud sharing your worries with other people whose epilepsy is far worse, people who are battling seizures on a daily basis.  You start to feel out of place in epilepsy forums and groups, like your worries are so less valid than people with active epilepsy so you keep these worries to yourself (probably another reason you could have a seizure).  So, who do you share these worries with?

Seizure freedom while amazing in so many ways can be at times very lonely and isn’t as easy as it might seem to the outside world.   But there are lots of us in this boat so keep talking, keep sharing your epilepsy experience and your worries because it raises epilepsy awareness and I find helps to keep me sane while living in that no man’s land of “seizure freedom“.

By Clair Cobbold

Founder of

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My New Neurologist

(I couldn’t find a picture so chose this one from last week – the painting is by my friend Gillian Burrows)

My “old” Neurologist was, the best. A man who was not only up-to-date on the latest developments, who saved my life through identifying me as someone potentially suitable for surgery, who was there on call should I have needed him, but, someone who CARED. Someone who was interested in the whole of my life and not just my seizures. It was clear to me that he didn’t identify me just as a person with epilepsy.

In the past, I had had some moody, un-knowledgeable, snobby and disrespectful neurologists, from whom the only question I received was “How many seizures have you had?”. Upon reflection, their attitude showed their lack of knowledge when it came to epilepsy. Unfortunately, at the time, the way that they treated me contributed to my feelings of shame regarding my epilepsy; making me feel like I was a waste of their time and a burden to society.

Due to more research, with each year, there is an improved, greater understanding of epilepsy by Neurologists in general. Having said that, the more respectable intellectuals learn, the more and more they realise how little they actually understand!

My new Neurologist (from the same hospital as the former Neurologist – Hospital for Neurology & Neurosurgery, UCL) I met for the first time today. As you can imagine, I was pretty nervous – she had a lot to live up to! But, she was lovely. I’d make same notes prior to my appointment (so that I didn’t forget anything!!) and she was keen to answer any questions that I had. She wanted to know how I was, not just how my epilepsy was.

You know when you can really tell if a Neurologist cares about you? This woman cared. I explained that I’d be travelling to do public speaking re epilepsy in Australia and she was so encouraging – although at the same time a little concerned(!). She suggested that I take Clobazam (a drug I also take to avoid clusters of seizures after an initial tonic-clonic) the day prior to my trip, the day of travelling and upon the day of arrival (and then the same travelling back to the UK). My new Neurologist is there not just to help control my epilepsy but to help me live my life. Now that is how all doctors should be.

I’ll be going to Perth, Melbourne, Canberra and Sydney!! I can’t wait! 

If your doctor isn’t as brilliant as those I’ve described from the Hospital for Neurology & Neurosurgery, then I suggest that you look elsewhere. Get the treatment that you deserve!! If you are getting fabulous treatment then tell your Neurologist/provide them with feedback. Us humans always seem to be very eagar to complain whilst not always appreciating the good!

Does anyone else have tales about a great Neurologist? Let me know!!

Take care everyone.

Torie 🙂 xx


PS Please post this blog on your social media/let your employer/college know about us!! Let’s spread the word about epilepsy!


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Challenging Public Awareness & Perception of Epilepsy


12th February is International Epilepsy Day. What does that mean you might ask? Well, to me it’s a clear opportunity for all those affected by – and indeed so far not affected by – epilepsy; to learn about the condition. To chat and educate regarding overactive brains!

 So many people, including many of those already affected by epilepsy just don’t realise how common the condition is. The fact that between 1 in 100 to 1 in 103 people (depending upon from where you source the figures) have epilepsy, is staggering to most. Say that it’s 1 in 100, aka 1% of the human population: that equates to 74 MILLION people worldwide. That’s greater than the population of the UK.

I spoke to a chap a few weeks ago, who told me that in the whole of his 70+ years, in which he was well-traveled and educated, he’d never met anybody with epilepsy. This saddened me because what it really meant, was that not one, out of all of the thousands of people that he’d met all over the world in his lifetime had been open about their epilepsy. Imagine the loneliness and shame felt by many. Things are better today than they were 70 years ago, but we still have a way to go.

I didn’t need further encouragement, but it’s coming across people like this man which do nonetheless encourage me to continue speaking about epilepsy publicly.

My Last Cluster

I last had a tonic-clonic seizure (one of the 40+ types of epileptic seizure) back in November 2017, upon return from a 6day business trip to Australia. Many are surprised when they hear the “business trip” part – for surely somebody with epilepsy couldn’t be in a position which requires an international business trip, right?! I’d actually been on Noongar Radio 100.9fm talking for 2 hours about epilepsy and meeting with Epilepsy Western Australia too! How ironic the story becomes…

It had been a productive and exciting trip but also exhausting and due to jet-lag, I hadn’t gotten enough sleep. This, of course, was a perfect recipe for a seizure…

The auras prior to the tonic-clonic were awful. I laid on the bed, trying to chill, but feeling scared. Then, there was: “nothing”.

I “woke” from the tonic-clonic seizure lying on the en-suite floor feeling: “off my face”, exhausted and very upset. I also had a very sore nose (I don’t know how I bashed it) and carpet burns (I have no recollection of how I got from the bed in the bedroom, across the carpet floor, and then into the en-suite). Anyway, I hadn’t had a tonic-clonic for 2.5 years and so I was gutted. I was whacked for days afterward and my nose didn’t recover from the bashing it received until this month (Feb 2018).



I’m stubborn, so the day after the seizure I was on my way to a meeting in London and the day that, on my way to lecture at a London university:


But, I was also sleeping a LOT! I had a few auras in the week following as well until my brain “calmed down”.


Epilepsy and Discrimination

Comparing epilepsy to mental health difficulties I feel to be rather apt because although epilepsy is neurological rather than psychiatric, many people with the condition suffer from similar societal discrimination. Both neurological and psychiatric issues are “stuff” going on in the brain and uneducated people often fail to see past hair, skin, and bone.

As a society, we are improving in recognising the neurological condition epilepsy for what it is: a complex illness. Many of us are involved in research to enable our Neurologists and Epileptologists to better understand and treat epilepsy. There are many events taking place globally regarding the condition (e.g. 4th International Conference on Epilepsy & Treatment in Zurich, which I’m speaking at!), but we all need to help share the further understanding and treatment options with the general public. We must not tolerate the continuing unfair discrimination still faced by many.


Epilepsy isn’t catching. It doesn’t make somebody possessed or evil. Taking lots of drugs daily and being tired as a result doesn’t make someone lazy. Epilepsy doesn’t define a person with the diagnosis. It’s something for us all to challenge each day, together.

Torie Robinson

International Public Speaker, Epilepsy Action Media Award Winner, HuffPost Blogger, Epilepsy Sparks Blogger

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The Brain Damaged Baron – Andy Nicholson

A quick intro to Andy:

  • Names: by day: Andy Nicholson, by both day and night: The Brain Damaged Baron
  • He’s 48 but sometimes feels 88. He’s from Lincoln, UK
  • He is: Medically retired, full-time webpage/site/Facebook blogger, vlogger
  • Hobbies: Cat whisperer, Hobnob scoffer, General of nobody imparticular, stepfather to an abandoned son, father to a lunatic daughter, husband to a lovely wife. I will have my sleep in this life and the next, pretty much permanently
  • His favourite group: Thunder
  • His greatest inspiration: Life and the quest for acceptance

Great fact: I blo*dy hate cheap teaspoons


Andy’s Story…

1969, late in the year. A small woman, heavily pregnant, eyes watering, pushes hard for 24 hours until out I pop. OK, I’ll skip ahead a quarter of a century…

1994, December, a building site in Leipzig, Germany. Five years after the fall of the Berlin Wall, Eastern Germany is in a hurry to catch up with the rest of its Teutonic, long separated cousin. For that reason and that reason only; hoards of British builders, fly, drive, or float over to the land of the rising bratwurst, so to speak.

And I’m one of them. Nine months pass by in the blink of an eye. Biers are imbibed, buildings are renovated, friends are made, orders are obeyed, and accidents happen.

8th of December, 6am. I enter a house on which I am working and plummet 7 metres down an open and unguarded stairwell. I land on my bonce and there was no safety helmet to cushion the fall. Essentially, I bungee jump, but in a move some would describe as foolhardy at best; I neglect to attach the bungee cord to my ankles. I’m comatose for three weeks, I have a severe brain injury and life has changed in that blink of an eye. Ten months later, I’m back in Blighty, learning to live with the new me and waiting for the next spanner to be thrown into the works. Works that have already compensated for the permanent loss of good health, the disappearance of too many friends to mention and to the realisation that I’ll never be the same idiot who went off to Germany. Still an idiot, but a whole new type of idiot.

The next spanner looms large…

The horizon fades, the view changes, reality is replaced by hallucinations and a kind of panic that is not only new but utterly terrifying. My body can’t handle it, the brain is on overload, muscles twitch and spasm and the heart rate goes off like Lewis Hamilton on a speed rush. Then, just when I can’t take any more, my body gives up. Darkness.

Hello, epilepsy. You vicious bas*ard.

Twenty years hurtle by and I DO mean hurtle. The epilepsy is 90% controlled, a happy marriage takes place and it’s time to give something back. An idea is hatched. To make films; vlogs (as the kids call them). Just my good self and a camera explaining what it’s really like living with brain injury, epilepsy, and many other related conditions. I know the score, many others know the score, but unless the brain injured, let’s call them the victims, are bedridden or wheelchair-bound, then the rest of the world never knows the truth. They never understand the reality of life when headaches are virtually permanent, memory is a lottery, words can be a struggle, anger and confusion are good friends and the ever-present threat of an epileptic seizure looms like an omnipresent being intent on ruining life for an indeterminate length of time.

Life’s a bi*ch, but I crack on. I’m not alone, there are thousands like me and the rest of the world understands not one jot. It’s time they knew. And to be honest here, let’s have a laugh about it. It’s the only way to attack it. I must laugh: if I don’t find humour in my conditions, then what’s the point? Laughter gets me by, it always has. And so, I chat about memory woes, seizures, toilet habits, friendships (or lack of), fatigue, tolerance, piles, confidence, the list goes on. And I smile a lot, particularly while my daughter is singing with me on one particular film. Why not? It’s better than wallowing in a mire of self-pity. I wallow enough in the endless drugs I need to take after visiting my dealer in the local chemist. So, here’s the reality. I’m still here, I’m still cracking on and the world needs to know what it’s really like for myself and millions upon millions of others. And please, PLEASE, laugh.



Andy Nicholson

The Brain Damaged Baron


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Caring For Those With Epilepsy – By Margaret Skeel

A quick intro to Margaret:

  • She’s 60 something, originally from the US of A (but resident of Sydney, Australia)
  • She is: a Biologist, High School Science Teacher, and Author
  • She has also: Worked in Disability Support with people who suffer from Epilepsy
  • Her favourite food: a juicy plum mango!
  • Her favourite book: Lord of the Rings by JRR Tolkien
  • Her greatest inspiration: the Buddha

Great fact: Margaret’s book is: Platypus Dreaming: The Adventures of One Lucky Platypus and Her Friends

Over to Margaret!

When I was a teenager I suffered from low blood pressure and used to pass out – and not gracefully like in the movies! Many people thought that I was having a seizure, although I wasn’t. It wasn’t epilepsy but I learnt how some people with this condition feel – you wake up feeling confused and embarrassed and people are treating you strangely. Not nice at all.

My first experience with an epileptic seizure happened when I was 18 and working for a doctor in a very poor community in Australia. A man was brought in who was having a tonic-clonic seizure that had started when he was cutting up meat. There was blood everywhere and we Assistants were told back then to hold the man down while the doctor gave him a shot -of what I don’t know. It was quite a nervewracking experience.

Years later I became a high school teacher. We were always taught to be alert when it came to students with epilepsy; but only 1 or two students in a school of over a thousand told us that they had the condition. Since we now know that epilepsy affects around 1% of the population, I know that there were probably 8 or 9 students that didn’t tell us about their condition. Of those who did tell us about their epilepsy; their meds may have been controlling their daytime seizures as no one had a seizure under my watch. We were taught what to do in case though:

  • Protect them from injury (remove harmful objects from nearby)
  • Cushion their head
  • Time how long the seizure lasts
  • Aid their breathing by gently placing them in the recovery position once any jerking has stopped (assuming the seizure was a tonic-clonic)
  • Stay with them until they are fully recovered
  • Be calmly reassuring

We also had to:

  • Alert the office so they could call an ambulance (if the seizure was going on for more than 5 minutes)
  • NOT  put a stick in their mouth!
  • Reassure the other students that their friend would be okay and then send them out of the room for privacy.

A few years ago I went into Disability Support and worked in group homes where the clients had multiple physical and neurological disabilities, and to my surprise, every one of them had Epilepsy.  Most had it under control but some suffered from what they called intractable epilepsy ( a type of epilepsy that doesn’t respond well to antiepileptic drugs (AEDs)). Even though they were on multiple medications, these people were still were suffering from lots of focal seizures and every few weeks they would have a major seizure (tonic-clonic).

I found the seizures quite unnerving at first but I learned the drill: keep the client safe and comfortable, call an ambulance if it goes on too long and assist with the recovery process.

I have heard that medical marijuana can help some sufferers. I hope that prejudices will not stop this treatment being made available to those who can benefit from it.

I make sure in my teaching capacity that I educate young people about epilepsy so that they are more understanding of those who suffer from it. I teach them that it is not catching and that it is not the work of demons. The prejudices are still there and must be countered at every opportunity.

For those of you who have this condition, I wish you all the best in the future. We will find a cure for this condition!

Margaret Skeel

Biologist, High School Science Teacher, and Author

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The Birth of the Cheeky Neuron

Hi, my name is Jo Adams, and I’m a Neuroscientist from Canberra, Australia

I am fascinated by the brain. I spent over 10 years teaching undergraduate Psychology and Neuroscience sharing my fascination. During most of that time, epilepsy was largely academic to me. It was something I talked about in classes and perhaps learned about in first-aid courses. I knew people who suffered from epilepsy, but it was controlled, and therefore, kind of invisible.

This all changed in 2013.

I received a sobbing phone call from one of my oldest friends, Leah. Her three-year-old daughter, Bronte, had experienced a cluster of seizures. Along with her husband, she had spent the past few days at the children’s hospital surrounded by machines pinging, with doctors throwing confusing medical terms around and with family reassuring them ad nauseam. All the while having the bewildering aftershock of seeing their tiny daughter having multiple tonic-clonic seizures.

Leah told me that she’d hit the jackpot.

Not because of the horrendous ordeal that her daughter was experiencing and that she and her husband were witnessing (that SUCKED more than any parenting experience to date). The jackpot, she said, was that she had me and my Pharmacologist husband at her disposal. Leah’s background is Dentistry and her husband is a Business Owner. At that time, they knew very little about neurology but now they needed to know and understand more. I felt underqualified as I was no expert on epilepsy! But I knew a little academic stuff, and I wanted to help them.

Over the following couple of weeks Leah and I sat down for a Brains 101 crash course. She asked questions, and I did my best to answer them. We talked about brains, their neurons and how they work. We talked about the neuro activity of seizures and how epilepsy medications effect it. We talked about her feelings, hopes and fears for Bronte. Epilepsy was no longer academic for me!

Importantly, we talked about how best to explain to Bronte what was happening. She had a right to know – but how? We searched the web for resources but found nothing. That was when the “Cheeky Neuron” was born. With the help of a toy neuron, we explained to Bronte what was happening within her brain. She had Cheeky Neurons; they were getting too excited and chattering too much!

The return of the Cheeky Neurons

Fast forward four years; I commenced a Masters in Science Communications and chose to include a project which would connect my interests as well as make a difference in this world. As there was still very little family-targeted information available online regarding epilepsy, I chose to officially bring the Cheeky Neuron to the world.  I knew what Leah had wanted to know. Epilepsy is emotional, confronting, frightening and very often for affected families, confusing.

Epilepsy is the oldest and most common neurological diagnosis in the world. Yet, it is surrounded by fear and stigma which often hinders open conversations and subsequently general awareness of the condition.

Nix & Nellie, the Cheeky Neurons, are the medium through which I am trying to educate and reduce the fear of epilepsy for families like Leah’s. The Cheeky Neurons website reflects the questions and the frustrations that Leah and her family experienced on their epilepsy journey. It presents easily accessible and easily understandable information for families upon diagnosis. For the children who are diagnosed, Nix, Nellie and their neural network take them on a journey explaining epilepsy using colourful and fun animations. The site also features interviews with experts and provides activities and links to support groups; all packaged in an entertaining, family style.

It’s been a steep learning curve for me. As I said, I’m still no expert on epilepsy. I’m also no expert on website design, animation, interviewing experts or any of the other MILLION skills I’ve needed to get a grip on to make this happen! It’s been frustrating and at times frightening, with occasional bouts of imposter syndrome. But it’s a journey and every time I look at how far the project has come within just a few short months, it’s been worth it! Every time an epilepsy advocate or organisation follows Nix & Nellie’s Twitter feed or shares their website, it’s worth it. Every time someone affected by epilepsy writes to me to thank me for Nix & Nellie, it’s worth it.

The future of the Cheeky Neurons

We need to face facts. Children are affected by neurological disorders like epilepsy, either as those with the diagnosis, those trying to support someone, or those who witness seizures. It’s not accurate to tell them that they, or their loved ones, are “sick”. Adults can sometimes perceive themselves as being “protective” when they withhold information/any explanation of epilepsy to a child. Indeed, sometimes the adults don’t initially understand the epilepsy themselves. But, children have a right to know what’s happening, and they also have an astonishing willingness and capacity to understand and learn information when it is pitched at their level. Knowledge is how we combat the stigma and fear that surrounds conditions like epilepsy. Knowledge is power.

In the long term, perhaps Nix & Nellie will take journeys to explore other neurological issues. Maybe Huntington’s disease, Multiple Sclerosis, Dementia or Motor Neuron disease; the list is huge. If Nix & Nellie can help families understand epilepsy, or some other topic that they explore in the future then the journey is worth it, for all of us.

Jo Adams

 Follow Nix & Nellie’s Cheeky Neuron page:

 Check out Nix & Nellie’s Cheeky Neuron website:

 Check out their great video on YouTube! 


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Derrick Kay – who generates his own high!

So. Please meet Derrick Kay an inspiring man who I connected with via the BBC3 video; Things Not To Say To Someone With Epilepsy!

A quick intro to Derrick:

  • He’s 28, from London, UK and works in Customer Services for Great Western Railway
  • His favourite foods: chapti, rice and beans
  • His favourite activities: watching and playing football, video games and the gym
  • His favourite book: 7 Strategies for Wealth & Happiness, by Jim Rohn
  • His favourite singer: Michael Jackson
  • His greatest inspiration: Jim Rohn
  • Additional fact: Derrick has never been drunk or taken any illegal substances

Derrick’s quote: “I internally generate my own high!”

Over to Derrick!

Growing up I was a typical boy, who liked video games and physical activities; especially football. I used to spend all my time outside on our street. The street was a lovely, family-orientated street. Back then we were not as driven by technology as we are now. ‘Playing time’ was based around playing outside on bikes, playing rounders, hide and seek etc.. Some of these games may sound ancient to the kids of today!

The day my life changed was when I turned 7. I remember it like it was yesterday. I remember borrowing a neighbour’s bike and riding up and down the street when I was hit by a car. For those of you who are wondering, no I was not in the wrong! The gentlemen driving the car was speeding. I hit the ground head first and my life changed.

A few days following the accident I recall having my first ever seizure. I was playing outside, feeling extremely happy when I started feeling this weird sensation for the first time. I felt dizzy, then started seeing stars and gasping for breath. After that, I remember waking up in the hospital and being told I had epilepsy.

Over the years I feel for some family and friends as it has been difficult for them to understand what epilepsy actually is. Some struggle to comprehend a seizure and each of its stages (before, during and after a seizure).

I remember a friend saying that after seeing my seizure first hand, he thought that I was possessed and that I needed prayers. I knew my friend very well and I knew that he didn’t mean for the comment to be malicious; it was due to lack of knowledge. Nevertheless, it was a bit concerning to know that in this day and age, when information is so accessible, he would believe and say such a thing. The problem with ignorant people like this is that they stick firmly to their misleading, inaccurate beliefs which have no concrete evidence. My friend was very religious, and religion was clouding his judgment.

I personally tend to have three stages with my seizures:

Stage 1: I start feeling dizzy, gasping for breath, feeling panicky;

Stage 2: The seizure commences;

Stage 3: I wake up confused, can be very aggressive (depending on how physically close people are to me) and then I become very emotional

I remember a close work colleague witnessing my seizure for the first time, especially Stage 3. His exact words were: “You acted like a baby” and then he started to laugh. He then went on to say that the yolk in eggs that I eat contribute to me having seizures! We must bear in mind that my colleague has no nutritional qualifications and was not a professional specialist in epilepsy.

Over the years I have been learning and practising ways to clear up misconceptions, educate people and give people an insight into epilepsy. I do this mainly through my YouTube and other social media platforms. Send me a message on the below link links if you’d like to learn more!

Derrick Kay

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The Neuro Ninja – Kyle Parker

So. Meet Kyle Parker! An incredibly inspiring, generous, rock-climbing and mindfulness addict!

A quick intro to Kyle:

Born and raised in Colorado, Kyle says: “I bleed blue and orange!” To the rest of us, that means Kyle is a tad passionate when it comes to the American Football team Denver Broncos!

Kyle’s saying: “To Simply Live Each Day”

Diagnosed with temporal lobe epilepsy on 11th April 2015, Kyle just wanted to know how to “fix things” (ah, if only things were so simple). He hadn’t had any diagnosed neurological difficulties prior. He hadn’t had an accident or bashed his head during rock climbing (during which he always uses a helmet, before you ask!).

“The worst moments were my first seizure and being diagnosed. The seizure broke my back in 4 places and I was completely blown away with the diagnosis. I was incredibly depressed, cried for hours each day and was utterly lost. I had no idea what I was getting into or any of the options our there for me. My life as I had planned it was ruined.”

One “good” thing was that the origin of Kyle’s seizures was able to be identified; Kyle had sclerosis (scar tissue) identified in his hippocampus within his right temporal lobe and it was from here that the seizures originated each time.


Kyle’s first Neurologist was a nightmare; he pretty much told him that there was no suitable treatment for him and that his life was over. Of course, Kyle swiftly went looking for another, more knowledgeable Neurologist – and in Kyle’s words he then (thank goodness): “hit the jackpot”.

Through his new Neurologist, Dr. Drees at the Neurology Center of UC Health, Colorado, Kyle learnt that his seizures were originating from one small part of his brain – that being sclerosis (scar tissue) within his hippocampus (within his right temporal lobe). To have this identified was fantastic. I say this because Kyle’s Temporal Lobe Epilepsy was medication-resistant. Dr. Drees tested him for his suitability for brain surgery, specifically: MRI guided laser ablation surgery. It turned out that Kyle was a perfect candidate for this particular surgery.

The idea of allowing someone to burn away parts of his brain terrified Kyle at first! He decided to try and control his seizures with medication and chiropractic adjustments. Kyle was seizure free from December 2015 to October 2016 but when the seizures returned, Kyle had had enough and was “done playing around”. Surgery seemed to be the best course to find true seizure freedom for Kyle. After having done a fair amount of research, checking out statistics and potential outcomes, Kyle’s response to the surgery offer was: “Let’s do it!”

Kyle’s first MRI guided laser ablation surgery procedure was in February 2017, which wasn’t as successful as he’d hoped; providing Kyle with only 4 months of seizure control. Luckily a second surgery was possible – and he had this in August 2017. The second surgery wasn’t quite as “simple” as the first; rather than aiming to just remove the existing scar, the new target was a large section of the right temporal lobe. 100% of Kyle’s right hippocampus and 80% of his right amygdala were removed through the use of two MRI guided lasers.

Since his last surgery, Kyle has not had one seizure. Nothing. Not even an aura. Kyle says that he now feels even more alive than prior to his epilepsy because he truly appreciates and lives his life now. One of his many quotes is: “99% of life is attitude, be positive my friends!” The diagnosis and treatment of his epilepsy have led Kyle to follow his dreams every day. He knows how lucky he is to have such a great life after going through such a terrible time. Kyle is a climbing enthusiast and an American Ninja Warrior in Training! Hoping to raise awareness for epilepsy, Kyle has set a goal of competing in the 2018 season of the television show American Ninja Warrior.

Kyle has a wonderfully supportive girlfriend called Sara who has been there to keep him strong and focused through it all. His wonderfully supportive friends and family have been and are priceless.

Kyle has had an incredibly supportive employer who has been flexible with his hours; including the time he’s needed off for treatment and recovery. Gold star to girlfriend and employer Zillow!


Kyle still takes the anti-convulsant Vimpat (Lacosamide) and will do so until/if he’s told he can reduce/come off of the drug. To suddenly come off of an AED is very dangerous and can encourage seizures (yes, I did this in my early twenties…. and had several seizures as a result :/).

Now let’s finish with a wonderful quote from Kyle: 

“Epilepsy has definitely shown me that I can face anything in life with confidence. No workout, physical or mental challenge nor anything else will ever be as difficult as dealing with epilepsy. I would like to add to that since fighting this battle for past 2 years, my life has found new meaning and is not ruined as I had once thought. In fact, I am a better, stronger person from having this condition. It might be twisted but a part of me is happy I was given this challenge to finally see my own potential.”

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Epilepsy WA – What a Team


So. It was a long journey from London to Perth, Australia, but a fantastic one and well worth it! Last week (which of course is part of Epilepsy Month!) I met with the wonderful Emma Buitendag (CEO) and Carolyn Bagini from Epilepsy WA (Western Australia). It was just wonderful to meet them both in person and learn all about what they achieve for those affected by epilepsy in WA.

Just as in the UK, those suffering from epilepsy in Western Australia are suffering from discrimination – at work, in the public and in their private lives.

Slowly but surely and with strength, celebrities in Western Australia are also starting to “come out” regarding their epilepsy and help reduce the ridiculous stigma.

WA is the largest and second most sparsely populated state in Australia; meaning that one of the most obvious challenges held by the charity is for them to help those affected by epilepsy all over the state.

To put things in perspective, let’s compare the size of WA to the UK:

WA: 2.5 MILLION square km

UK: 242.5 THOUSAND square km


Over the next year, Epilepsy WA are setting up several more support groups;  spread across the state. This way they will be able to support many more people, much more effectively. The support groups are for anybody affected by epilepsy, including the patient with the diagnosis, their family members, friends, employers; pretty much anybody affected directly or indirectly by the condition. During the meetings , they will be able share their experiences and receive up to date and useful information. There will be tips re coping with the condition both personally and professionally.

When people are seeking medical advice, Epilepsy WA has a close professional affiliation with the Neurological Council of WA (NCWA) to whom they refer members.

One of Epilepsy WA’s promises is that they are “are committed to providing support to improve the quality of life of people with epilepsy and increase community awareness of the condition” and this is truly happening. This is what we need.

All of the work that Epilepsy WA has done (since 1963!) and continues to do is only possible through member, public, government and corporate support and it’s wonderful to hear how these people/bodies are making all of the work possible.

There’s going to be the Purple Walk 4 Epilepsy WA on the 25th March 2018 (hmmm is that an excuse for me to visit Perth again…?!) which will raise awareness and funding for the charity. If you’re in WA, join in! I’m pretty sure the sun will be shining! You’ll also see that I’ve worn the hat (see one of the above photos!) and have one of the cool purple, woolly sheep!

I, of course, mentioned Epilepsy WA in during my slot at Noongar Radio Strong Minds Talk Back on 100.9fm on Thursday as the whole 2 hrs was about epilepsy (a blog about that is to come soon). Epilepsy affects those of every ethnicity, including of course the Australian Indigenous population and so we must just keep talking about it – factually!

I must say that meeting both Emma and Carolyn was a pleasure. To know that the leaders in such an essential, impactful charity are genuine, friendly and have a sense of humour is a gold star in my book.

If you or your company would like to sponsor a wonderful charity such as Epilepsy WA, contact them on:

Tel: 08 6457 7699



If anyone would like to support/set up a support group/get involved with Epilepsy WA, contact them directly!

Tel: 08 6457 7699



If you fancy giving a cool pressie (or receiving…and hinting to whoever), check out:

Yearly Entertainment Book/Entertainment Digital Membership which also provides support to Epilepsy WA

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Epilepsy & Anxiety

So. Some stress is good for us. Our adrenaline gets going, gets us buzzing, excited and can “encourage” us humans to go for it. But as so many of us know, there’s a very fine line between excitement and anxiety.*

Unfortunately, when you mix a certain level of stress/anxiety with epilepsy, a seizure can be induced. This used to really upset me. Here are some examples of what I’ve gone through in the past:

  • You’re trying to get on with your life as “normally” as possible (whatever normal is!) but you’re feeling anxious due to, say, a work deadline. Then, you suddenly realise that you are anxious and then without a way to try and control your anxiety, you become more anxious because you know that you may have a seizure as a result of your anxiety!
  • You are totally excited and looking forward to meeting up and going out with friends/a date but then as a result of that excitement, you have a seizure (I’ve got another story about that….)!

Imagine the above happening again and again, that you then come to the conclusion that you shouldn’t allow yourself to have fun, go out, challenge yourself or experience deep emotions because they may induce a seizure. It can become depressing and isolating. It has happened to me and lots of people with epilepsy that I know. Epilepsy seems to be holding you back and no one else understands.

I used to be in denial; working in corporate finance, I was under a lot of pressure, was stressed and was going out for “beverages” with work too often. Of course, this didn’t do me any favours; especially as my epilepsy was getting progressively worse as well.

Now, particularly since my surgery in 2013, I have come to terms with the above and instead I manage MY life. I manage MY time, sleep and work on what I enjoy more. I’m in charge. I walk a lot. I get the sleep that I need. I do mindfulness (love this video). I play my wonderful piano to relax. I’ve reduced my caffeine intake. I don’t drink. I PLAN my time. I chat with friends. I say no to pointless meetings. I run a social media company that I love. I spread the word about epilepsy globally. But, I still sometimes get too busy and stressed so I take a step back, reevaluate and take some time out. I know what my brain and body needs and I have to keep rebalancing everything.

If you’ve only recently been diagnosed with epilepsy, you need to adjust your life. It’s totally unfair, but either you do that and take as much control as you can, or you allow your epilepsy to be a complete bitch and control you entirely.

Sometimes people’s seizures will change/get worse and all of the above has to be reconsidered and reprioritised. But, no matter what anyone may try to tell us, epilepsy does not define us. It’s a significant part of our lives (da*n it) but you are not an epileptic. You have epilepsy and deal with it in the best way possible for you.

*I’m not claiming to be an expert when it comes to the very serious mental health condition anxiety. For professional advice, speak to your doctor/psychologist/neurologist/psychiatrist


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