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):

A Assess
Assess the situation – are they in danger of injuring themselves? Remove any nearby objects that could cause injury 
C CushionCushion their head (with a jumper, for example) to protect them from head injury
T Time
Check the time – if the seizure lasts longer than five minutes you should call an ambulance
I IdentityLook for a medical bracelet or ID card – it may give you information about the person’s seizures and what to do
O OverOnce the seizure is over, put them on their side (in the recovery position). Stay with them and reassure them as they come round
N NeverNever 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.

Epilepsy Week!

Yep, Epilepsy week is now underway – what, you hadn’t heard? Yes, it is one of the slightly less well advertised awareness weeks. Still, here it is, and the underlying theme this year is information.

Well, although I haven’t exactly done my bit and absolved myself, that is at least a small contribution to the cause.

You know, I did appear in the local paper once for Epilepsy week a few years ago. The theme that year was employment, and I was slightly downplaying the workplace ostracism I was on the receiving end of, seeing as it was colleagues and not the management, and I didn’t want to lose my job.

As far as relevant epilepsy information goes, I think I’ve already covered a few of the basic points, so I wanted to use what remaining energy I have to go into specifics about treatment and diagnosis.

In order to get a diagnosis of epilepsy, you need an appointment with a Neurologist. Now, an epilepsy nurse (which I am lucky to have access to – not everyone does) once told me that here in the UK there is a drastic shortage of Neurologists; it’s too broad a field, requiring too many differing specialisations. It’s why you get really long waiting lists, and many of them work privately too. When you eventually reach your neurologist, s/he will probably refer you for an EEG – another long wait to get to one of the fewer locations where EEG tests can be carried out. For me, this meant a three month wait. Then you have to wait for the results to be analysed. Remember that epilepsy can only be directly identified if you have a seizure while strapped to the machine, so a lot of diagnosis has to be based on patient history as well. (I was “lucky” and has some spike and wave activity picked up on during my initial test.)

This means follow up appointments with the neurologist, and, where available, a forwarding to the Epilepsy nurse, who won’t also be dealing with head pain, tumours, strokes, parkinsons – all the other things that Neurology covers as well as epilepsy. For this reason, the chances of having a Neurologist who has a real interest in epilepsy are smaller than you think. Mine have tended to specialise in pain and migraines. My last neurologist (currently off sick which means I haven’t seen him in 18 months) didn’t really seem to know that much about the subject at all.

Anyway. Diagnosis. After you get a diagnosis, the long, drawn-out process of treatment begins. If you’re lucky, you’ll get on with the first medication they put you on, and the dose will be tinkered until your seizures dramatically reduce in frequency or halt altogether. If your epilepsy relates to brain trauma (I had an MRI as well as an EEG because seizures can also be symptoms of tumours) then surgery might be an option.

However, not everyone has such a simple solution. I’m currently taking my second type of medication, as I reacted badly to my first, my seizures still occur as frequently as daily (last one this morning; I’ve been going through a cluster), and I consider myself not badly off. Some people go through seemingly all the types of medication, and the side effects from some of them are really not great. In fact, on the leaflet, most anti-epileptic-drugs will warn you that side effects can include convulsions. The fact that this is an improvement for some people should say quite enough about epilepsy as a whole that I can safely sign off for now.

And again, Happy Epilepsy Week! Happy Information!

Do I even need to say?

Yup. had a seizure again.

I mean, it’s not exactly shocking, but it is rather annoying. Just another reminder of all that is wrong with my brain. At least I managed to get out and vote.

I’m not going to get all preachy now, because the polls have closed and I’m too late to make a difference (too disorganised and forgetful, if I’m honest), but I do hope that if AV doesn’t win (which I guess it probably won’t) that it was close. I care about democracy, and having my voice heard. Mostly because I feel that right now it isn’t – that as far as the people in power are concerned, people like me don’t really exist; we’re just statistics. And it’s easy to dismiss numbers on a page, and a lot harder to dismiss names and faces, which is why no one ever comes looking for the names and faces when the hard decisions are being made.

Curses, that’s starting to get preachy. I’m going to call it a night before I start lecturing my opinions to the world wide void when it doesn’t really matter and I’m too late to make a difference. It’ll only disappoint me when I run out of air to wheeze.

And yes, I have been having a slightly rubbish few weeks. Haven’t we all?

Fit The Bill

I’m actually rather ashamed of that title, for reasons which will become self evident later on. Just thought I’d get that out of the way now, before I forget.

So, I actually had a seizure yesterday, and another today too. Yesterday’s was weird. I had an aura, and placed M safely out of harm’s way, or handed her to someone (we were visiting W’s parents, who live nearby), then instead of lying down, for some reason my brain decided it woul be an excellent idea to take a few steps across the room before giving up on the whole standing lark completely, and falling backwards. Fortunately W was there to catch me. Then, I remember my top lipcurling back/up, probably exposing my teeth. It was odd, because it almost felt numb – not my usual disconnected observation, but as though someone was holding one of those electrical impulse probes to my face and triggering the muscles randomly as they do in the occasional documentary about that sort of thing. Honestly, epileptic or not, these things are just getting stranger and stranger.

Today’s was probably a dissociative seizure (or whatever the flavour-of-the-month word for them is among health practitioners). I was more or less “there” mentally, though with the usual inside out andback to front priorities going through my head – for some reason it was vital that I both listen to W and the television. When my body feels all there but won’t respond to my orders for it to move, it probably isn’t epilepsy pinning me to the floor.

In other, more global news, a Ten Minute Rule Bill regarding Epilepsy was read out in parliament last Wednesday. I meant to mention it here sooner, as I contacted my local MP to ask that she attend (she didn’t appear to be in parliament that day, alas, and nor did her office get back to me…).

The bill will recieve its second reading in March, which apparently is when these smaller bills fail. However hopeless it may be, I shall be in contact with my local MP again to try and make sure she is there for this reading, and to ask for her support in getting it through the system. To anyone in the UK actually reading this blog (and I know my readership is um, select), I would ask that you too enquire as to whether your MP will be in parliament when it is read out, and if they could support it. Once again, apologies for the title pun. Sometimes, these things are hard to name.