Eventually I was prescribed a starting dose of lamotrigine. Taking the dose alongside three other medications ruined my sleep, resulting in that ‘swarm of bees’ feeling. It began as a low, dull hum in my head, which then grew louder and sharper until it woke me up completely.
My experience with nocturnal seizures was quite confusing and lonely at first. Education around epilepsy is still very bad – bad enough for people with epilepsy to not understand their own neurological events. I used to think they were myoclonic seizures. There are ‘normal’, slight bodily jerks that happen when you’re falling asleep called myoclonus, but myoclonic seizures occur when you’re awake – they just happen to mimic these random movements, which were in fact tonic-clonic seizures! I sometimes wake up with a sore tongue, tight muscles, or I make weird vocalisations.
My GP suggested I write a list of all my strange neurological events. The obvious tonic-clonics, yes, but also the ants, the numb limbs, the enlarged extremities, the sensation of being inside a fishbowl, and anything else – so she could refer me to the local neurology department. All it took my neurologist to diagnose parietal lobe epilepsy was that list and my account, which in hindsight I’m glad I included so much detail since seizures from the parietal lobe are notoriously hard to catch on an EEG. The diagnosis was very straightforward: much of its sensory quality isn’t present in other types of epilepsy. I am grateful to my neurologist at the John Radcliffe in Oxford, for his expertise and kindness.
I’d say my sleep affects my epilepsy rather than the other way around. If I’m stressed to the point where distraction is impossible, it will show in my sleep. It will be very restless and interrupted by spasms. I am also hugely affected by heat and even more so by sunlight. I think this intersects with my reverse seasonal affective disorder. It may be like a chicken-or-egg situation, because perhaps I hate sunlight because it triggers my epilepsy, but I’ve hated it since before I started having sleep seizures. I sleep much better in winter, but then again, I am much happier in winter.
Having a rare type of epilepsy has both good and bad aspects. I kind of love being a bit of an anomaly. Though I’ve had scary seizures, I’m privileged that mine tend to manifest as honking noises or pleasant sensations instead of convulsions that result in injury or concussion. For an autistic person with a special interest in the brain, I am especially privileged to experience this. On the other hand, though, it’s especially lonely: I haven’t met a single other person with my diagnosis, despite epilepsy being one of the most common neurological disorders. Only through the works of Guy Leschnizer and Suzanne O’Sullivan have I been able to read about others with experiences like mine.
I hope also that being autistic can be of some help to researchers as well, since autism and epilepsy sometimes go hand in hand, and I do think it’s interesting that both affect my sensory perception. With the number of dangers that people experience from epilepsy, it is tempting to ignore epilepsies that don’t sound as bad, but I don’t want to feel so lost anymore. I’d like to collaborate with researchers to help them, and all of us, discover more about parietal lobe epilepsy.
Our Shape Network is the UK’s largest ever patient population of people affected by epilepsy who want to be involved in research – read more and join the network here.
You can read about the co-funded Epilepsy Research UK & Autistica Fellowship project, led by Dr Charlotte Tye, here.