Sunday 6 February 2011

Seizures r shit

Update isn't really that positive....'oh there's a surprise'.
Seizures have progressed to 'Secondary generalised seizures'

With seizures it is hard to explain how they change and the different types. Also how they can change into different types!! But here goes anyway........

Basically mine started off as simple partial seizures, which involved electrical activity in my brain focal to where my tumour is and the activity didn't spread or go to any other parts of my brain. Therefore only effecting a small part of my body.
Now the seizure starts in that same way, but the electrical activity now continues on into other parts of my brain. That's why its called 'Secondary generalised seizures'. It now affects a lot of my body causing spasm's and contractions in other areas not associated with where my tumour is located. The activity does not travel all over my brain (at the moment)
When the electrical activity is in all areas of your brain then that's called a 'generalised tonic clonic' seizure and that's when your brain has to sort of reset and start again! because it can't cope with all the wonky activity all over your brain!

I think there are actually 40 different types of seizures in total! but they are basically divided into two major groups of seizures – partial and generalized seizures.

Well that's my way of explaining the seizure situation (above)
This is the experts or proper way of explaining it (below)

All seizures are caused by abnormal electrical disturbances in the brain. Partial (focal) seizures occur when this electrical activity remains in a limited area of the brain. The seizures may sometimes turn into generalized seizures, which affect the whole brain. This is called secondary generalization.
A generalized tonic-clonic seizure is a seizure involving the entire body. It is also called a grand mal seizure. Such seizures usually involve muscle rigidity, violent muscle contractions, and loss of consciousness. Generalized tonic-clonic seizures are the type of seizure that most people associate with the term "seizure," convulsion, or epilepsy. They may occur in people of any age, as a single episode, or as part of a repeated, chronic condition (epilepsy).

My seizures can move on into a tonic-clonic seizures, as I've been told by my consultant. But it doesn't mean it will and a lot of people just stay with the same type of seizures and they never change. That's how I thought mine would be! and I wasn't even aware that they could change in this way. I thought that once they told you what type of seizures you had that was your diagnosis!!
Two years ago, when first diagnosed I could stand and have a seizure!! My right hand would twitch and my right arm would move up towards my face and my head might, but not always move to the right.
Now and with the latest seizure. If after my warning I don't lay down I will fall down. So 1 hand twitch and I get down into recovery position. Without going into to much detail. It now affects my facial muscles, mouth and throat muscles, both my arms, my right leg, sometimes left leg and it affects my respiratory muscles to now. So during my last seizure I bit my lip and chewed the side of my cheek. I stopped breathing for a while and lost consciousness for a couple of seconds. It's scary fucking shit especially because I am still aware of what is happening to my body. I feel like I'm chocking and can't breath. But I can't communicate with anyone, even though I still have the thoughts in my head. At the peak of the last seizure I wasn't aware of anything and that's when I lost consciousness.
My epilepsy nurse said all of this is quite common to happen during a generalised seizure as all of your muscles can be contracting and spasming and that's what happened to my respiratory muscles which stopped me breathing. But she said I will always start breathing again and that I won't choke! at the time it was happening, I was thinking shit I'm not breathing, I'm not going to get through this one.
It seems like every seizure I have, something else shit happens as well! When people have a generalised tonic clonic they lose consciousness, have the seizure and then wake up after not knowing what's happened to them. Where as I have to go through it all, knowing what's happening too me and panicking its not all going to be okay! With my last seizure all I could see as I came out of it was blood and saliva dripping from my mouth.
I can't talk for several minutes after and the process of brain to mouth communication won't return properly for a good 40 mins+ (I just feel spaced out) It can take it out of me for a couple of days. Where I have a headache, extreme tiredness and my body will feel like I've been beaten up!! also with any mouth injury's I have, it can take me up to 3 days to recover. I do still have milder seizures and I have a rating system of 1-6, 6 being the biggest and worst I have and 1 being a hand twitch and that being it. But I had a week, where I had 4 or these big ones in 7 days. I do have some kind of seizures every day at the moment and I never know if it will progress to a 6 and I never know when they will happen.

So that's basically what it's like for me and my family now.
I'm putting together a first aid thing for my family, so they all remember what to do and when to ring an ambulance.
Jamie has got to the stage where he is just used to them. I think it still scares him, but he knows mummy always gets up again! It doesn't matter how many times my family see it happen, because the seizures are never the same it is still scary. I don't know which side of the seizure I would prefer to be on. I would hate to be witness to that happening to someone I love, but then it's so fucking horrible having one. I can't imagine what it is like for my family to deal with all this epilepsy shit!!

Anyway bored of talking about it now, it pisses me off.

I've started Epilim now, been on it 2 days, my consultant said she has put me on a good starting dose (200mg am & pm) So I've got 2 weeks of seeing how that goes before I see her again.
Still having side effects from my other drugs, so still feeling a bit crappy a lot of the time. Well all of the time really.

There is lots of other stuff going on with us with getting help etc. But I'm depressed enough now, so that can wait for another day.