Posted in Blog

Zonegran: Day One

Day one on Zonegran has concluded.

It’s also been over twenty-four hours since my last seizure! Yay!

Although I did have a mammoth migraine last night, so bad in fact that regardless of how tired I was I couldn’t get to sleep at all. So the boyf and I had an old skool R&B night (lol), playing my #fav jams until gone four in the morning, by which point the dragon had finally released its grip upon my consciousness.

Migraines are a frequent partner to seizures, particularly complex partial ones.

I’ve also spent A LOT of time on Twitter of late, as I try to raise more support for my petition and it was refreshing to come across people who not only have the same type of epilepsy as me, but who also agree that these seizures are far more difficult to recover from.

Because they don’t “look like fits”, people often assume that they are just little episodes and misjudge the amount of time it takes to recover, when in actual fact each and every time I have one of these “episodes” I lose a part of me that takes an extremely long time to recover. At times I never get those parts back; I’ve lost count of the amount of days I’ve lost due to memory loss.

I also stumbled upon some articles; when I was diagnosed with epilepsy almost three years ago, I was and up until recently have been very reluctant to browse the net for information. However, I’ve finally come to the conclusion that having epilepsy means that I must play some part in my own self care and education. One by Richard Restak MD acknowledges the strong connection between epilepsy and psychiatry; it concludes that if one has epilepsy, and they are diagnosed with a mental health disorder, it is actually a misdiagnosis and should be treated as one and the same. This is because what presents as symptoms of mania, is actually part of the epilepsy and its effects on the frontal part of the brain.

This is a powerful conclusion for me because some days I feel like the mental girl, and some days I feel like the epileptic girl – like having a split personality. I’ve never even considered the fact that they could be the same person.

The second article, which resonated deeply with me, was by U.S. National Library of Medicine.

Now the reason why I finally received a diagnosis was due to what we thought were night terrors finally being diagnosed as secondary generalised seizures. However, the symptoms I displayed sound incredibly familiar to this:

“Nocturnal frontal lobe seizures can manifest as: paroxysmal arousals, which consist of brief, sudden eye opening, head raising or sitting up in bed, a frightened expression and, sometimes, vocalisation; or nocturnal paroxysmal dystonia, which involves dystonic posturing and hypermotor (complex motor) phenomena, and episodic nocturnal wanderings, which are longer in duration (one to three minutes), with associated stereotyped dystonic movements…. Confusional arousals consist of episodes of confusion arising from sleep, about which the person is usually amnesic.”

When I was a child, not only did I suffer from what we thought were night terrors, migraines and episodes of “blankness”; I also used to sleepwalk. I stopped when I was about 10, however I did have a few random episodes of wandering in university. Therefore, this second article explains a lot for me.

The only missing link in the chain however, is the lack of family history on my part; nobody in my family to my knowledge has ever displayed symptoms of epilepsy, let alone been diagnosed. Then again, there are conflicting studies to say that where some believe that epilepsy can be hereditary, others strongly refute this.

All of this makes me feel strangely positive and mostly empowered, to have more information on this condition which on a daily basis steals away so much power from its victims (I do hate that word).

It’s also refreshing to read the thoughts of some clever folk who may actually know what they are talking about.

Anyhoo, better go and take my second dose of Zonegran. Let’s hope that day two on this stuff makes it two whole days of no seizures too!

purple-heart

xoxo

Author:

I’m Cece Alexandra and I have Epilepsy. Since being diagnosed, my life has changed significantly. After studying and teaching Humanities and Literature for all of my adult life, I was bullied and lost my job a month before qualifying to become an English Teacher. Once you fail the Teacher Training course in England, you cannot ever retrain; I then became too sick to work because of my Epilepsy. I am now currently studying an MSc in Mental Health Psychology with the University of Liverpool. My disability provokes me into raising awareness for invisible disabilities, which I also actively partake in with Epilepsy Action. Part of that awareness is to help fight against invisible disability discrimination - I believe that this behaviour is not cognitively unconscious; modern society is actively partaking in a hierarchy of disabilities and I believe that there is not enough psychological research to prove this. I am also clinically interested in Cultural Psychology - particularly Collectivist Culture, and wish to pursue this further in my academic career.

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