Epilepsy – Not ‘just’ a seizure disorder
Nearly a year ago I wrote a blog explaining epilepsy as I knew it then. Having spent many hours trawling through Facebook groups, trying to find an answer to my problems, I now know a little bit more. Therefore, in this blog, I will explain the mantra of every discerning epilepsy Facebook group ‘Epilepsy – it is not just a seizure disorder.’
However, before I begin, I have to admit that epilepsy is a seizure disorder, so I better explain what a seizure is. A seizure is a sudden surge of electrical activity in the brain which can cause convulsions, a range of physical symptoms, thought disturbances, or a combination of symptoms. The most well- known is the tonic-clonic seizure – involving a loss of consciousness, rapid jerking of the arms and legs and falling to the ground. But there are over 39 other types including absence (loss of consciousness for a few seconds), partial complex (staring blankly, repetitive movements) and myoclonic seizures (spontaneous quick twitching of the arms and legs). Epilepsy can be genetic, it can be caused by brain injury, a secondary disease (like dementia) or there can be no apparent cause (I think that mine was caused by a slight knock to the head when I was nine).
Seizures are not pleasant to those that are having them in the moment, but it is the impact that the seizures have on the rest of their lives that can cause the real problems and here’s why:
- Your life becomes a little unpredictable (but not in a good way). Although some people find that they have certain triggers for their seizures (eg heat, loud noise, lack of sleep, drugs, alcohol and don’t forget strobe lighting) some triggers are hard to manage (eg stress, menstrual cycle, interaction with medications\ medication changes) and some are just unknown. And realising that at any moment you might not be in control of your body or your mind is just a little bit scary.
- Post-seizure impacts – Post-seizure you might have to deal with the physical consequences of a seizure eg I saw a photo of a person who had serious burn injuries because when she started her seizure she was holding an iron. But also post-seizure you might have to deal with the wooziness and fogginess that it leaves you with – I’ve have four clonic tonic seizure and it took be several hours afterwards until I was compos-mentis. I heard of one instance where a lady was raped post- seizure but she was only made aware of it because her ‘boyfriend’ told her, otherwise she would not have known.
- You can’t drive – Once you have a seizure the driving licence authority, quite rightly for safety concerns, takes your driving licence away. This is bothersome for me – I have lost some degree of independence, but it is not devastating because I live in a place with good transport links and my children go to school on a bus. But it can be devastating if your job requires you to drive or if you live in a place with poor transport links .
- Cognitive impacts – As I have explained in my blog the impact of these electrical surges are having on my planning, processing, ability to focus, memory and so forth is huge. I believe that this is not due to seizures as such, but eliptiform discharges, of which, when last measured, was having 16 in a 24 hour period. Many people with epilepsy suffer to some extent with cognitive dysfunction, and whatever the extent it can be distressing.
- Depression – people with epilepsy have a higher prevalence of depression. There’s probably more than one reason why this is so – for some it’s the anxiety of knowing that at any moment they could have a seizure; for others the side effects of the anti-epileptic medication; for others the loss of the driving licence; for me the cognitive impacts of the disorder or most likely it’s a mixture of factors including non-epilepsy factors. But for some people the depression related to the epilepsy can be worse than the seizures themselves.
And so in conclusion this is why, I hope you will agree, epilepsy is not just a seizure disorder. It’s a disabling condition that can have severe impacts on the person living with it at all times.
In other news
I have been taking my new anti-epileptic medication but I don’t like the side effects – when I am stressed I involuntarily stick out my tongue and become inarticulate. My doctor looked in the BNF (the doctor’s medical bible of pharmaceutical side effects) and it didn’t list these as side effects so he said not to worry about it. But I am worried about it and I won’t be sticking with this medication and I will discuss with him how I can come off of it. My next step it to go on a medicalised diet called the ketogenic diet – but to do that I need to be under a nutritionist and I have an appointment with her in October.