Recently I had a conversation with someone who asked how my epilepsy was, when I gave them the quick rundown their response was “Oh well at least you haven’t had a ‘proper’ seizure in a few months.” I just shrugged. What did they mean? I had told them that I had not had a Tonic Clonic seizure since the summer, however my partial (both complex and simple partials) remained unpredictable. At the time I was so used to people not getting it that I let it go, however this was not the first time someone had simply dismissed my other seizure types. I also have had comments such as “well at least you are only having ‘little’ seizures.” Today for some reason I have sat and stewed on this for a while, so I am going to talk about seizure types and why ALL seizures are ‘real’ seizures.
There are over 40 types of seizures (https://www.epilepsy.org.uk/info/seizures-explained) and I am not sure really when it first dawned on me that people didn’t take my other seizure types just as seriously as the TC (Tonic Clonics), and I stupidly never thought to argue it when someone made throw away comments, however those ‘smaller’ seizures and not ‘proper’ ones are the ones that have caused me most problems in life. They are mainly the reasons I have been hospitalised, had burns that have required A&E treatment, the reason I no longer bath really, so actually these ‘smaller’ seizures ARE a big deal. The other thing for me is that sometimes after a TC I feel like my brain has rebooted, so once I have slept off the initial effects and any injuries are healing I am ok. The partial seizures I find much harder to deal with, they make me tired, I often cannot shift it for a while, they make me agitated, tearful, confused, they distort my perception of the world around me and they hinder my concentration and patience amongst other things.
When I started writing this blog I asked Chris about the partial seizures, and his response surprised me; he told me that he finds the partials harder because he can be talking to me and think I am with him and I am not. He also added that he worries about the partial seizures more than he does a TC because I can carry on and seem normal and it worries him what could happen to me when by myself (for example I walked out into traffic a few years ago whilst having a partial seizure). After talking to Chris I turned to others and the responses came thick and fast and all pretty much echoed what Chris said.
The first thing that became apparent was the frustration of parents of children with epilepsy, tell them these ‘small’ seizures don’t count, and they will tell you that do. That they matter very much when their child is falling behind academically because of partial seizures, that they matter when the children feel ‘different’ and cannot do the things their friends do (such as go swimming unsupervised, or that a strict bedtime routine has to be followed to stop children becoming overtired and triggering seizures, and explaining that to a child who cannot understand why they can’t stay up just that little bit later this once. That the tiredness these seizures cause means that the children miss out on everyday activities possibly further isolating them from their friends.
Another problem that was highlighted with seizures other than TC is that they are so hard to spot. The first problem is that they are hard to diagnosis and one person told me they were relieved when they had a tonic clonic seizure as they then got their epilepsy diagnosis after living with partial seizures for ten years. Many said that their fear with these kind of seizures is that they are hard for others to recognise and that could mean the person having the seizure may come to harm because they would be ignored because people don’t realise they are having a seizure, or on the other side of that that people don’t know how to deal with these types of seizures and help given may be wrong. This can also result in a delay in rescue medication being given, because if it can’t be recognised when a seizure is happening the correct medication may not be given in a timely manner.
A reoccurring theme in answers from people were how the partial seizures leave them out of action whilst they recover, and this is with seizures where consciousness hasn’t been lost. One of the biggest frustrations were that people missed things and spent the whole time playing catch up, trying to work out what they have missed, again leading to a feeling of isolation or as one person put it “just leaves me feeling like an idiot”.
Seizures are seizures regardless of their nature, they all have an effect, they all come with their own problems, you cannot dismiss them just because they don’t fit the stereotype of what you believe a seizure is or should be. EVERY seizure will have an impact on the brain and they should be taken seriously. If you are unsure of what to do if someone is having a seizure have a look here: https://www.epilepsy.org.uk/info/firstaid
Epilepsy is a very personal condition and there is no one size fits all diagnosis; the person experiencing the seizure WILL need your help, you could make all the difference to them.
My names Faye, mostly known for being a tea addict and keen runner and swimmer. I'm 32, married and I had my 1st child in June 2015, oh and I also happen to have epilepsy. This is my story of Pregnancy, Motherhood & Epilepsy.