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Shape shifting - the outside truth from the inside track, about living with epilepsy

Updated: Feb 8

Epilepsy is a disorder that lives in the shadows, praying on victims that are often reluctant to admit their condition - even to close family, friends or co-workers - because there's still a great deal of stigma and mystery surrounding it. Epileptic seizures do not simply take the stereotypical form of convulsions, foaming at the mouth and falling on the floor.... They can of course be that - but open your mind and understand these horrific moments come in various shapes and sizes.


Living with someone with epilepsy is challenging - most days. Living with someone with epilepsy is also frightening - at times for you, but for them - always. Living with someone with epilepsy, is inspiring, it opens your eyes to the lengths humans can go to push back on illness, against all odds. Not many people understand epilepsy and seizures - why would they - because not many people have experienced them.


Common misconception is that epilepsy is somehow a result of poor lifestyle choices, or that if the victim had turned a different corner they would not have 'got it'. The truth is this; Quite frankly epilepsy has no discretion, epilepsy doesn't give a shit whether you are young, old, straight, gay, black, white or identify as a toaster. Epilepsy demands attention when you least want to give it, Epilepsy is a social hand grenade set to go off when you least expect it. Epilepsy is a life changer. Epilepsy is a behaviour changer. As a result, in order to deal with epilepsy, both the victim and the carer require patience, understanding, and empathy, of each other, and of the disorder.


In this blog post, I discuss how I best support a person living with epilepsy. I also hope to shred the myths surrounding epilepsy, and shed light on the reality of living with 'drug resistent epilepsy'.


Elaine's Story



Elaine began suffering seizures back in 2006. She suffers from a complicated condition called musicogenic epilepsy; a rare form of complex reflex epilepsy with seizures induced by hearing music, although playing, thinking or dreaming of music have all been noted as triggers. Musicogenic seizures may be provoked by different musical stimulus in different people. Some report seizures according to genre of music such as jazz, classical, choral or pop music. For others the trigger may be a particular type of instrument or even a composer.


For Elaine, Ed Sheeran hits all those seizure notes - we just don't know whether it is the singing or the tone of a voice. Statistically musicogenic epilepsy is thought to affect one in 10,000,000 people, and is a chronic condition (this means she will have it for life). I must qualify, Ed is not the only trigger - don't take it personally Ed 😳


Treatment

Elaine's epilepsy is what is termed drug resistant, meaning exactly that - it is diagnosed following a failure of adequate trials of two tolerated and appropriately chosen anti epileptic meds. Drug-resistant epilepsy is commonly diagnosed after several years of uncontrolled seizures, however, in most cases, it is evident much earlier. Approximately 30% of people with epilepsy have a drug-resistant form.


After drug trials came the exploration of surgery, to cut out the part of the brain where the seizures originated. For 3 years Elaine had tests and trials, and telemetry, and the clever people at the QE talked about her case in meetings. Eventually concluding that Elaine's seizures were multi-focal. This means they originated in more than one are of the brain. The risk was way too high - surgery was out. You cannot imagine anybody being more disappointed not to be having their head cut open.


In 2021, The last hope lay in the newly developed Vagus Nerve Stimulation. This involves implanting a pacemaker-like generator below the skin in the chest area that intermittently sends electrical impulses to the left vagus nerve in the neck. The impulses are mediated to the brain by the vagus nerve and thereby help to inhibit electrical disturbances that cause seizures. That's the theory - the reality so far is inconclusive.


And so life goes on.

When we talk about stereotypes, I will never forget the story of Elaine getting on a bus a few years ago, and asking politely that the driver turn the music down because she would be poorly. He refused of course, because he had "never heard of music causing epileptic fits"... One nasty seizure and a missed bus stop later, Elaine missed work that day - literally. Its not the bus drivers fault of course, that he is a fucking blinkered moron. Most of the World have never heard of musicogenic epilepsy, but I would like to think that most reasoned intelligent people would understand a simple request.


Elaine was diagnosed when she was about 39 and for the last 18 years, has been at the mercy of this shape shifting, life changing disorder. We met in 2014 and in the years since then, I can tell you without doubt - it is a life changing disorder. The books will tell you the stats and the medical effects, and the outwardly physical signs of seizure, the confusion, the disorientation, the sickness. They may even touch on the personality changes that take effect following seizure, or just before seizure. I am learning after 9 years that the signs of Elaine not being well, whilst not always straight forward, are not a mystery. They are however always deeply upsetting for her. After any seizure, she will be able to tell me how rough she feels, and what type of seizure it was. Elaine has multiple types of seizure, but the one she fears most are the ones she labels 'scary'. Its ironic that the scary ones for Elaine are the least scary for me.. Who am I kidding, they are all scary - especially the ones I don't see whilst at work. No amount of academic text can prepare you for that.


We don't know why Elaine developed Epilepsy, and neither do the medical experts. We don't know if it is the tumour in her brain or if it is the bout of meningitis that struck her down in her 30s. We don't know if it is hereditary or complicated genetics. What we do know is that it is drug resistant, and that it attacks any number between 4 and 8 times a day, anytime in a 24 hour period - even in her sleep. We know that it has robbed her of her ability to make new memories, her short term memory lasting overnight / 2 days at best; we know that a fall during seizure crushed her spine and took her mobility, we know that it has cost Elaine a job she adored, after 16 years as a teacher.


I know that Elaine is a different person immediately post seizure than before, and that the only way for her to right herself is sleep. I know that sleep can last 15 to 20 hours.


Its a fucker. No doubt. But it is part of Elaine's fabric, and part of the tapestry of our life. It has to be lived with - so it needs to be respected and understood.



Understand Epilepsy

Epilepsy is a neurological disorder that causes recurrent seizures. Seizures are caused when there is an abnormal electrical activity in the brain. There are over 600,000 people in the UK with a known diagnosis of epilepsy

That’s 1 in 103 people give or take. In every week over 600 people are given an epilepsy diagnosis; that’s 87 each and every day.


Shockingly, and most frightening of all, there are 21 epilepsy-related deaths every week in the UK. Sudden death in epilepsy, is a very real worry - especially in cases of uncontrolled epilepsy. Doctors call these deaths SUDEP for short, and most occur during or after seizures, which can cause people to stop breathing and can trigger dangerous irregular heart rhythms. and those with uncontrolled seizures are at higher risk for unexpected death. Their respiratory drive just goes away and never comes back.

 
What appears to happen most of the time is people just stop breathing at the end of the seizure, and they never start breathing again

Dr. Jacqueline French

Chief medical officer at the Epilepsy Foundation and a professor of neurology at NYU Langone Health.

 

How to Care for Someone With Epilepsy

Caring for someone with epilepsy requires patience and understanding. For me it felt overwhelming at first, but Elaine took the time on our 2nd date, right after watching "The inbetweeners 2" at the cinema, to have a chat with me. She explained exactly what might happen, and what to do when it did. Experiencing Elaine's seizure for the first time, was horrible. To be honest, they are all scary for the onlooker, but that doesn't come close to the fear Elaine feels during an episode. Her fear is enough to drive her to tears, nausea and incontinence - and regularly does.


There's nothing more debilitating about a disability than the way people treat you over it.

There are some simple things you can do to help victims if they experience a seizure — stay calm and try not to panic. Make sure they’re in a safe place where they won’t hurt themselves and keep people away from them until it passes. Make sure you know what medications they take for their condition (if any) and provide emotional support throughout the episode if necessary. Elaine taught me - time it - any longer than 4 minutes, call an ambulance. One thing I have always struggled with is the request of the Neurologist to video Elaine's seizures. I find this very difficult. The last thing I want is a reminder - it feels so macabre.


Additionally, make sure you understand their triggers so that you can avoid situations that might trigger another seizure or reduce the risk of an episode occurring in general. Finally, make sure they get plenty of restful sleep each night since lack of sleep is linked to increased seizures in people with epilepsy.

Living with someone who has epilepsy doesn’t mean your day-to-day life has to change drastically; It can be a challenge, yes - but it doesn't have to be impossible.


All it takes is thought and care - the basics of life. — the best care possible for the one living with this bastard of a disorder is understanding.


 
I feel so lucky that I met the love of my life. You know somebody's in it to win it when...you're having a seizure and they're holding you.

Kathleen Hanna

 

If you have any thoughts or stories to share on this subject - please do so in the comments.



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