With a 1 in 20 chance of having an epileptic seizure, how epilepsy aware you?
My Story
Most people don’t know that I had epilepsy from age 17-25. My worst seizure lasted over 2 days and had me about 15 minutes from being pronounced brain dead. I was 20 years old and 4 months pregnant at the time.
The Consultant told me I went into status epilepticus (an extremely dangerous condition when epileptic fits follow one after another without recovery of consciousness between them). Both me and my unborn baby were lucky to be alive.
Oh, Lets Go Back to the Start
Rewind three years to my first seizure. It occurred after a big night out celebrating one of my best friend’s birthdays.
It was a tonic-clonic seizure, the kind most people think of when they hear the word epilepsy, seizure or fit (loss of consciousness, violently shaking).
But what most people don’t know is that there are up to 40 different types of seizures and symptoms can vary greatly from person to person. These can include loss of memory, consciousness, awareness, confusion, staring, uncontrollable jerking movements… the list goes on.
It was 1997 and there had been recent reports of young people having seizures and dying on nights out after taking the drug ecstasy. As their stories so closely resembled mine, I figured the seizure was a one-off… I’d simply had too much and was lucky to be alive!
Fast forward six months to seizure number two on my 18th birthday. This time I realised it was more than just a symptom of too much partying. Even though I was out with friends at the time, I was not under the influence like I was in the first instance.
Those seizures scared me into submission. My party days were well and truly behind me!
It was at this point my mom felt compelled to pull some strings and get me an appointment with a neurological consultant at the Walton Neurological Centre.
Diagnosis... Death
After a CT and MRI scan, the cause of the seizures was clear and diagnosis delivered. It was an inoperable brain tumour in the left temporal lobe of my brain.
The location of tumour was directly over the speech centre of my brain making it too dangerous to remove or even attempt to biopsy. It was decided by the specialists that the risk of severe stroke, being mute or death were way too high… especially for a girl of 18 years old.
Anyone who knows me knows I can talk the hind legs off a donkey! So being mute was NEVER going to work for me haha!
They believed it to be a low grade tumour (slow growing). They were unsure how long it had been there, whether it was cancerous or how long it would take to kill me. But they assured me it would kill me and most likely within the next ten years. No one expected me to see my 30th birthday.
One day I’ll write more about how I felt in that moment, my mindset throughout my ‘illness’ and why I believe it saved me. What I will say is frighteningly (or luckily depending on how you look at it), being 17 years old, I had no real sense of mortality. In typical teenage fashion, I was more upset about no longer being able to drive than my impending death!
In the Eye of My Storm
The first step was managing my seizures. I was prescribed a small dose of Epilim (Sodium Valproate), a well known anti-epilepsy medication. This changed my seizures completely and never had a tonic-clonic seizure again.
So instead of losing consciousness and violently shaking, my vision would become impaired and would feel like I was falling in to a hole. Almost like when you’re about to pass out, get a head rush or when they put you under for a general anesthetic if you’ve ever experienced that.
Sounds would become distant, I couldn’t see straight, would lose peripheral vision in one eye and completely lose the ability to speak. I would get huge rush of anxiety and panic as I felt my body and mind drifting away out of my control.
In an attempt to resist the seizure, I would fight to keep control my mind by focusing on reciting the ABCs or counting. I usually got somewhere between the letter G - K before realising the seizure was inevitable.
In that fleeting moment, I was usually able to utter the phrase, ‘I’m not feeling well’. This was the only way I could communicate to my family and friends that a seizure was taking hold of me.
And that is genuinely how it felt. Like my mind and body were being taken over against my will. But every time, I had to let go, submit to the seizure, lie down, admit defeat... I was gone.
My seizures varied in length from minutes to hours. The main thing I remember is a sense of fear when the seizures started (which I later found out was because the tumour was near the part of the brain that controlled anxiety responses) and feeling of tiredness and lethargy for a day or so after.
My main seizure triggers were stress and tiredness. That meant that a night out with my friends would result in having a seizure within the next 36 hours without fail.
Being so young watching all my friends go out, go on holiday, partying and having fun. Knowing I couldn't go out with them and enjoy those experiences together without having a seizure was soul destroying but the reward wasn't worth the risk.
Nights out had to be planned for and limited to just once or twice a year. Even when I went out, I didn't have that same sense of belonging with my group of friends because I'd missed out on so much.
I didn't get their inside jokes and couldn't get involved in their conversations about what happened last week when they were out. It made me feel completely alone and isolate.
Over time as the tumour grew, the seizures became more frequent and the dosage of meds went up. Within a few years, I was on the maximum dosage of Epilim per day and eventually other meds were introduced.
The side effects of these meds were horrible. Visual impairment, hallucinations, exhaustion, lethargy, slow mindedness, reduced attention span, memory loss, weight gain… the list goes on.
I was advised to write a will… I had just turned 23.
The Miracle Birth of My Daughter
It was Easter weekend, April 2000. I was 20 years old, dealing with the devastating effects of living with a brain tumour and epilepsy and trauma of being in a long term highly volatile and abusive relationship.
So you can imagine my surprise when I woke up bank holiday Monday morning to a positive pregnancy test.
My specialists were horrified and urged me to terminate. But I just couldn’t do it. I was young, willful, naive and felt like I had to take responsibility for my actions and see the pregnancy through.
My seizures worsened at this point, becoming uncontrollable despite being prescribed an additional medication called Tegratol (Carbamazepine).
Which brings us back to the beginning of this blog… 20 years old, pregnant, uncontrollable seizures, nearly pronounced brain dead and on bucket loads of medication which caused developmental complications with my pregnancy among other horrific side effects.
But miraculously, on 6th December 2000, my daughter Kiera was born 5 weeks premature. The delivery was extremely complicated due to my condition and the position she came out in.
Kiera had a few developmental delays due to the anti-epilepsy medication and being born prematurely. Twenty minutes after she was born, her lung collapsed and she spent the next two and a half weeks in the NICU.
Watching my baby fighting for her life was one of the scariest things I've ever been through! However somehow, we both survived against all odds.
Under the Knife... The Beginning of the End
By October 2003, my epilepsy was steadily worsening as was the domestic abuse I was facing at home.
The neurologist and neurosurgeon made the executive decision to attempt a brain biopsy. I was advised to write a will… I had just turned 23.
As I prepared for my first brain surgery it dawned on me how dangerous and scary brain surgery really was! Disclaimers had to be signed that I was happy to wake up with half my skull missing, that I could stroke out and risk of death was high.
With that in mind, I wrote my will and made the decision to leave my abusive partner. It dawned on me that I may never wake up from this surgery and contingencies needed to be in place to ensure my daughter's safety... her well being was my top priority.
As they wheeled me down to the operating theatre, it hit me that I'd spent the last six years of my life being battered by epilepsy, a brain tumour, medication AND my partner. Every aspect of my life was HARD and the risks involved in this surgery were so high.
I felt tired, drained, broken, weak... I was read and happy to die. If it hadn't have been for my daughter, I would've had absolutely nothing to live for.
I distinctly remember looking at my mom's worried face as she held my hand before going in to the operating theatre and thinking, 'Don't worry, Mom. It's ok if I don't make it through this surgery. God's will be done'.
In fact I'm pretty sure I said something along those lines to her.
Going in to such a high risk surgery, you are completely powerless. You have to put your blind faith in the hands of the surgeons and medical support team and trust that what is meant to be will be. Otherwise you'd go crazy!
And that's exactly what I did. I went in with an open mind, open heart, completely surrendered myself to them and the process and had faith it would all work out how it was supposed to. That was the only way I could deal with the severity of the situation... to let go.
Luckily I woke up with nothing more than a few holes in my head. Some of which I wasn't expecting from the metal frame they screwed round my head which totally freaked me out!
After a year of testing, that biopsy came back inconclusive. A second brain surgery was scheduled for August 2005.
Over the next 20 months between surgeries, my epilepsy became so bad that I was having daily seizures.
A few weeks before my final surgery, I went back home to California to visit friends and family... in the back of my mind, possibly for the last time.
Whilst there, we went on our standard family trip to Disneyland. After a few minutes, I became completely exhausted and was unable to walk. Cut to me being pushed round Disneyland in a fucking wheelchair. I was mortified!
This might sound crazy, but it wasn't until that moment that I truly realised how ill I was. Even with everything I'd endured over the eight previous years, that was the moment my mortality punched me in the face!
Without a successful result from my brain biopsy the following week to allow for a treatment plan to be structured, I wasn't sure how much longer I had.
The following week I was back in the UK for my second brain surgery and man was I ready for it!
Unlike the first surgery, I woke up this time with twenty staples in my head and a smile on my neurosurgeons face.
He proceeded to tell me, ‘when I got in there, I thought to myself, I can get that! So I did!’
Ten days later, the results were in! It was a meningioma, a benign tumour that apparently could’ve been removed nine years previously if they had known what it was!
As it was impossible to tell if he got every last abnormal cell, routine scanning over the next ten years was necessary and possibly another surgery if it began to grow back.
He was extremely apologetic and assured me that with the way it presented on the scans, he’d make the same call a million times over. Pretty sure he was twitching I might sue him. But to be honest, all I felt was gratitude and pure elation!
I was alive! I was going to live! I was nothing but grateful!
Luckily for me, every scan from that day on was clear. I never had another seizure again and was very slowly weaned off my anti-epilepsy meds. I was finally discharged from my neurologist’s care in 2015… the year he retired.
Watching his eyes tear up as he tried to hold back his emotions, he told me he never gets to discharge his patients and that he couldn't think of a better way to end his career.
Needless to say, I balled my eyes out... our journey together ended on such a beautiful high! It was truly a miracle!
At my lowest point, I felt incapacitated, alone, lethargic, useless, fearful of my own mortality, heartbroken I most likely wouldn’t live to see my daughter grow up, unable to drive, socialise with my friends the way I was used to or work as much I would’ve like.
The only way I can describe living with epilepsy and all of the other traumatic things that were going on in my life at that time is it was like living inside a tornado.
With a cloudy mind from the medication and the overwhelming gravity of what was looming over me, it felt like everything and everyone was just happening around me. All I could see was what was directly in front of me. I felt out of control and powerless in a life-threatening situation.
The decisions I made during that time were often viewed as selfish by my family and loved ones. But I wasn't physically or mentally capable of doing anymore. I was simply surviving in the moment with no thoughts of the future or anything outside my vision.
It’s scary for the person afflicted and only in recent years have realised how frightening it was for the whole family... but I survived.
Not enough is known about neurological conditions such as epilepsy and how to best treat them as the brain is such a complex structure.
Awareness and research in this relatively unknown area allows for huge advancements!!! More is discovered about the brain every single day!
New pioneering techniques and development in medications allow more and more people with epilepsy and other neurological conditions to live fuller longer happier lives.
But be under no illusion… a neurological patient is a patient for THEIR lifetime... read that again and let it sink in...
As my neurologist and neurosurgeon told me, I was one in a million... a medical ‘miracle’... I was discharged after 17 years under their care but most are not so lucky.
This week is about raising awareness of epilepsy, how it affects people’s lives and how we can help them feel less afraid, less lonely, more included and fulfilled... get involved!
If you or anyone you know is affected by epilepsy and would like more information or support, please use the following links:
Epilepsy Society
Epilepsy Action
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