I was 19 when I had my first seizure. Waking up to paramedics standing over me attempting to put a cannula in my hand, I had no idea what was happening. Hospitalized for the night, I remember not knowing what was to come, and how difficult my life would be from that moment. I was referred to a Neurologist who proceeded to ask a couple of basic questions, chucking a diagnosis of Epilepsy in my face, and putting me on Tegretol (Carbamazepine). Then the rush of medical testing came – MRIs, EEGs, sleep-deprived EEGs, CT scans, the works. My wallet hurt and I struggled to keep up with all the medical expenses. At the same time as losing my license, ability to go out with friends, and my general freedom, I became a burden on the people who loved me, as I was the one who they would be constantly worried about – at 20, being treated like a child (for good reason) was a difficult thing to come to terms with.
No person without epilepsy can understand how you feel after a seizure. The migraines, the nausea, the pain throughout the body that won’t stop no matter how much Endone and Morphine is injected into you. No one can be pumped with that much medication every single time, so you come down to trying the Panadol and Nurofen, but it does nothing – so all that can be done is to lie there, frustrated, waiting for it to end. When I have one, I feel helpless and scared, scared that I may not come out of the next one, or that I will have one in a place or situation that will potentially place me at risk, or my loved ones at risk of watching me and not being able to do anything. I have to admit, it is also humiliating. Humiliating to be in that position, having crowds surround you and people who all of a sudden act very differently because of ‘this side of you’ they have seen. It can be so confronting to see a grande mal / tonic clonic seizure, to watch someone you love convulse, eyes in the back of their head, foaming at the mouth, knowing you can do nothing. I have seen a video of myself having one, and I was vacant – just not there. It was a terribly scary thing to see.
One thing that took a long time was me coming to terms with how serious a condition I had. Medication compliance was difficult, as I was a uni student who at the best of times finds it hard to stick with routine. As well as this, being told about having to wear head gear, move my bedside table, getting a thin pillow, was all so ‘intense’.. But the scary thing is, I won’t realise how much I need any of those measures until it’s too late.
Through out my adolescence, I had been battling with what Doctors called panic attacks. Even though I never truly did feel anxiety or stress on a normal day, these panic attacks were diagnosed as Generalised Anxiety Disorder, and I was subsequently placed on anti-depressants, which I knew I didn’t need. It was only after my first seizure that my Neurologist suspected that I was having complex partial seizures. I was put on Epilim (Valproate) after Tegretol failed to cover off on both grande and petit mal seizures, and I gained a massive amount of weight, and was a nightmare to be around in the mornings. But I kept trying to push through. Getting to over 100kg, feeling more depressed than ever, and struggling with pushing away everyone around me, I finally removed Epilim and kept on trying with the Tegretol.
I was removed from my job because of my epilepsy. Unfortunately due to their use of the excuse that I was at risk of harming myself should I have had one on my own, I was made to take all my leave until it was all used up, being forced to resign so they could fill my job. I remember crying to my boss, after 3 years of being a loyal employee I could not understand the lack of empathy that came from her, and to this day I still can’t. I am very lucky to have gained a position with a unit that completely understands what I go through, empathizes with my situation, and provides anything they can to make it as easy as possible for me. For that, I cannot thank them enough. I dealt with a relationship breakdown, partly because my ex-partner could not understand that the person I was between doses of Epilim was not truly myself, and held me accountable for the mood swings and extensive medical appointments I needed to attend (and pay for). I am also very lucky in that I am now with a partner that would no doubt understand if he needed to be there, drive me around, and would afford me the patience that I needed during medication changes, and when I falter due to the stress before and after a seizure. To have him, my colleagues, and my parents – I am a lucky girl.
I have now returned back to only having a few seizures every year. They are yet to be completely controlled, as even the best of specialists cannot determine exactly what type of epilepsy I have, what triggers my seizures, or what medications would work best. I have lost approx 40kg, regularly exercise, eat well (generally!), and am in a loving relationship with a man that I know will be next to my bed should I ever be admitted to hospital again. I still struggle with anxiety about where or when I might have a seizure, but I have been lucky in that past having two in my workplace and one in an exam, I have never had one in public. My colleagues are amazing and understanding, and do not even blink when I need the extra time off to rest, or need to go home when I have a day of auras. I have a solid network of people who genuinely care about me and my condition, so all I can do from here on is to do my best in helping people around me, and provide my time and efforts into the campaign about a condition that affects so many peoples lives, but lacks so much understanding and knowledge – even with the amazing medical advances that have risen in recent times.
I hope that one day a cure for epilepsy, for right from the mild to the severe status epilepticus, can be found. I hope that one day we will no longer have to battle with specialist visits, extensive testing, medication titration and hospital admissions.. and that one day, epilepsy will be a cloudy memory, a cured condition. One day we will no longer be classed as having a chronic medical condition, or a disability.. And can live our lives without any fear 🙂
For the cure xx