Tuesday, 20 September 2011

Why I want people to Take Epilepsy ACTION

Well, I do have news, but I'm afraid it's going to take a back seat to the main thrust of this post. You see, today, Epilepsy Action launch a new campaign - Take Epilepsy ACTION - to promote awareness about the different types of seizure that exist, and what first aid is appropriate.

This is, obviously, something that is very important to me. Epilepsy Action commissioned a YouGov survey which showed that almost 9/10 people would not know the correct thing to do if they saw someone having a seizure. A significant portion of people would actually do something which could potentially harm the very person they were trying to help.

Now, given that Epilepsy is one of the most common neurological conditions in the world, that's a pretty shocking statistic. It's about time that the correct information was widely know, as people with epilepsy have had to face public misunderstanding and discrimination for a very long time.

The link above goes to the main campaign page for the Take Epilepsy ACTION page, and contains a short video demonstrating the correct first aid procedure, as well as how you can help. But I want to repost here the ACTION message to remember if you see someone having a tonic-clonic seizure (where the person is unconscious and convulses - the "typical" seizure):

Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury 
CCushionCushion their head (with a jumper, for example) to protect them from head injury
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
IIdentityLook for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
OOverOnce the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
NNeverNever restrain the person, put something in their mouth or try to give them food or drink

Remember ACTION, and call an ambulance if you have reason to believe this is the person's first seizure (if you cannot find an ID/Medical card or jewellery, if the person has a second seizure without recovering from the first, or if the person is injured. 

Now, on to my news. I had my neurologist's appointment yesterday, (finally!) and it has certainly given me food for thought. She thinks that the seizures I am having at the moment are all non-epileptiform attacks - in other words, they are all the dissociative seizures. This is because I have had video telemetry showing that I do have this form of attack, and the majority of EEG tests I have had show this pattern. In other words, all the drugs in the world aren't going to fix my current problems.

I'm still not entirely sure how I feel about all this. I haven't been told that I don't have epilepsy - the first EEG I had did show unusual activity, and she has told me to carry on taking my medication for now. But it looks more and more like the Keppra is taking control of the epileptic seizures, and what I am left with are the dissociative ones, which are caused by, surprise surprise, stress. I've been referred to a different specialist, and will probably be referred again for some CBT.

I do feel a little up in the air about it all. While I am happy to go with the neurologist's opinion, especially as there is some evidence to back it up and there's a chance of "fixing" the problem a little, I'm not entirely convinced that all the seizures I'm having are dissociative. Many of them, yes, do fit that pattern. My non-convulsive seizures are all rather similar to each other, and these are the type that was captured on the video telemetry and recognised as dissociative. But I have never had one of my (much) more convulsive seizures while wired up to an EEG, so I'm left in limbo wondering which category they fall into. I guess time will tell. If the CBT doesn't stop them, then I'll know it's more likely they are epileptic. Still, they are certainly the least common of my seizures now, so I don't think they're the priority at the moment.

No comments:

Post a Comment