The mask appointment came through they call it the "planning appointment" dun dun duuun.
It's this Friday
Wednesday 30 November 2011
Thursday 24 November 2011
New drug & update
Yes another one! It's a new one, only just out this year it's called retigabine. So far it's okay.
I get really dizzy, slurry and "wonky" just after taking it, but that seems to settle down after an hour or so. The struggle to find the right words & making mistakes with what I'm saying, is there all the time. Side effects, gotta love em.
Anyway I'm on 3 again now, so hard to tell if it's just the new drug's side effects or just a side effect of the new med cocktail I'm on. Maybe once I'm on full whack of retigabine and off epilim It may be better. But that's if I can tolerate side effects to get that far.
- Keppra
- Carbamazapine
- Lamotrigine
- Oxcarbazine
- Topiramate
- Phenytion
- Clobazam
- Zonisamide
- Epilim
- Retigabine
Wednesday 23 November 2011
The mask!
The latest is I'm going to have radiotherapy in the new year.
Not because there has been a progression or I've got the dreaded "c" word. It's in an attempt to control my seizures. My mdt agree that after trying 10 different aed's it's time to try something else. So thats the plan. Me & lee totally agree and we actually suggested it in the first place. We feel like we've been treading water with it all for 3 yrs. Side effects verses seizures for fucking 3 yrs now enough enough I've had a fucking enough already.
I think I've had a good go and I think thats why they are agreeing on this option for me.
The oncologist told us there is a 50/50 chance it will make any difference to my seizures. But hey it's not gonna make em worse so fuck it why not? I know it's gonna make me really ill for most of the year, but it's better than treading water for another 3yrs.
It's the mask I'm dreading at the moment and having that moulded & made for my face ready to start my treatment. I'm not claustrophobic....well I don't think I am! It's just the thought of having something over my face when I'm not sure how they will do it or how it will fit/sit. It's just the not knowing I think.
Losing bits of my hair is a whole other story.
Monday 10 October 2011
I'm online on my phone now
.....so I can bitch & a moan where ever I am.
Latest & 1 bit of news, have 2 lovely cats called sox & slippers. Will try & keep more up to date on my blog now
Monday 12 September 2011
I'm still here ........
.........Just :-)
Just in case anyone was thinking I had popped my clogs!!
Insensitive thing to say I know, but hey ho!
I think my posts are going to be short & sweet from now on. I don't have the energy to go on my computer and type long posts any more.
I spend a lot of my days tired and using all of my energy on getting through my day. Lots of my energy is focused on Jamie.
I think I pretty much got most of my shit off my chest in the first year or so anyway!!
Just in case anyone was thinking I had popped my clogs!!
Insensitive thing to say I know, but hey ho!
I think my posts are going to be short & sweet from now on. I don't have the energy to go on my computer and type long posts any more.
I spend a lot of my days tired and using all of my energy on getting through my day. Lots of my energy is focused on Jamie.
I think I pretty much got most of my shit off my chest in the first year or so anyway!!
It gets easier.......
.......does it really!?
The saying's are 'time is a great healer' 'it gets easier with time'
When people say to you 'it will get easier'
I don't think it gets easier, I think it just gets different.
The loss of a life, love, money what ever it is. It doesn't get easier, just different!!
I think that's what its become for me 'just different'
The saying's are 'time is a great healer' 'it gets easier with time'
When people say to you 'it will get easier'
I don't think it gets easier, I think it just gets different.
The loss of a life, love, money what ever it is. It doesn't get easier, just different!!
I think that's what its become for me 'just different'
Thursday 11 August 2011
Home Help no.2
A lot has happened since my last post, we'll in my world it has. Or maybe it hasn't really!! anyway,
On my 2nd home helper now. 1st one was brilliant but got head hunted for another/better job. Very sad she left, cried a lot (sounds dramatic I know) I was absolutely gutted and hated her for a week and keep saying to her how devastated I was. I got over it a bit and forgave her.
She is lovely and worked 4weeks notice when she only really had to give us 1 week, she didn't have to give us any more than that.
We became friends over the 3mnths she was with us, so will hopefully see each other now & again.
I don't think people realise what a home help means, not just to the elderly, disabled or even people with social and learning difficulties but for people like ME!! (who are people like me anyway?, the 'odd's'!!)
A home helper isn't just there to do a job! they become part of your families life. They become part of your life, they become your friend, your companion, your support, your freedom/independance!....basically everything in your daily life. Its so so hard to
a) get used to the idea of that in the first place.
b) find the right person (takes a very kind, caring & dedicated person)
c) trust someone, let your guard down and be yourself. TRUST.
Without a home help I would be 'fucked' I basically wouldn't be able to do anything, due to the risks to me & Jamie. It is NEVER worth putting my Jamie at risk.
On my 2nd home helper now. 1st one was brilliant but got head hunted for another/better job. Very sad she left, cried a lot (sounds dramatic I know) I was absolutely gutted and hated her for a week and keep saying to her how devastated I was. I got over it a bit and forgave her.
She is lovely and worked 4weeks notice when she only really had to give us 1 week, she didn't have to give us any more than that.
We became friends over the 3mnths she was with us, so will hopefully see each other now & again.
I don't think people realise what a home help means, not just to the elderly, disabled or even people with social and learning difficulties but for people like ME!! (who are people like me anyway?, the 'odd's'!!)
A home helper isn't just there to do a job! they become part of your families life. They become part of your life, they become your friend, your companion, your support, your freedom/independance!....basically everything in your daily life. Its so so hard to
a) get used to the idea of that in the first place.
b) find the right person (takes a very kind, caring & dedicated person)
c) trust someone, let your guard down and be yourself. TRUST.
Without a home help I would be 'fucked' I basically wouldn't be able to do anything, due to the risks to me & Jamie. It is NEVER worth putting my Jamie at risk.
Monday 25 April 2011
My little box
It can be such a lonely world and in my little box that is 'my world', it doesn't really have anything in it! It has little eye holes I can see out of.
Can't see any one though, people on the outside, people outside of my little box!
Things have fallen out the bottom, things aren't put in there any more. My little box is shrinking it used to be massive! My little box has cobwebs, it's been put to the back of the shelf. By me? by other people? or probably both?
It feels sometimes like being in prison, you live for the times your family your loyal people visit, which they always do. But you have no idea what is going on in the 'real' world, on the outside. You don't see anyone else, no one else visits. Why? who knows? maybe my box is too small now?
I feel like when or if I do get on the outside, out of prision, I won't be able to cope! it will be too scary and all the people I once knew won't be there any more! it all would of changed too much. What will I do, who will be there when I finally get home?
Of course my family will, as they all dip in and out of the world that is 'my little box'.
Will I ever get out of prison or am I in for life???
Can't see any one though, people on the outside, people outside of my little box!
Things have fallen out the bottom, things aren't put in there any more. My little box is shrinking it used to be massive! My little box has cobwebs, it's been put to the back of the shelf. By me? by other people? or probably both?
It feels sometimes like being in prison, you live for the times your family your loyal people visit, which they always do. But you have no idea what is going on in the 'real' world, on the outside. You don't see anyone else, no one else visits. Why? who knows? maybe my box is too small now?
I feel like when or if I do get on the outside, out of prision, I won't be able to cope! it will be too scary and all the people I once knew won't be there any more! it all would of changed too much. What will I do, who will be there when I finally get home?
Of course my family will, as they all dip in and out of the world that is 'my little box'.
Will I ever get out of prison or am I in for life???
Eplilm update
Seems to be helping with the seizures, only having mild and the occasional moderate ones.
Tiredness is hard work, I am struggling with tiredness every day.
Weight gain. Increased appetite.
Tiredness is hard work, I am struggling with tiredness every day.
Weight gain. Increased appetite.
Back to being a fucked up foody!!!
Great, my drugs are making me fat. I want to cry. I've struggled with my weight most of my life having to watch and be careful with what I eat and as an adult I've needed to keep going back to weight watchers to keep it under control.
My last drugs actually lowered my appetite and I became a weight I was happy with. I wasn't thinking about food all the time, I wasn't eating just for the sake of it, I wasn't troffing and I felt comfortable in my clothes. It was sooooo nice to be like that, without it being any effort. To be able to eat a little bit of what I liked and for the first time food not being the centre of everything.
Maybe I was just a fucked up foody before and those drugs made me a bit more 'normal' without food issues.
But know its back to all the food related shit again. I'm putting on weight really quickly as well. It's soooooo depressing for me.
But as always I will try and keep a hold on it :-(
My last drugs actually lowered my appetite and I became a weight I was happy with. I wasn't thinking about food all the time, I wasn't eating just for the sake of it, I wasn't troffing and I felt comfortable in my clothes. It was sooooo nice to be like that, without it being any effort. To be able to eat a little bit of what I liked and for the first time food not being the centre of everything.
Maybe I was just a fucked up foody before and those drugs made me a bit more 'normal' without food issues.
But know its back to all the food related shit again. I'm putting on weight really quickly as well. It's soooooo depressing for me.
But as always I will try and keep a hold on it :-(
Thursday 14 April 2011
Drugs update
List of drugs tried and tested. This is where I'm at now and I'm still on 3,7 & 9
1.Keppra
2.Carbamazapine
3.Lamotrigine -reduced & will reduce further
4.Oxcarbazine
5.Topiramate
6.Phenytion
7.Clobazam -reduced (very small amount)
8. Zonisamide
9. Epilim -NEW
The only side effect of Epilim is tiredness, which I am struggling with a bit at the moment.
I am still reducing Lamotrigine, so my seizures still happen. But Epilim is looking good at getting some better seizure control. Fingers crossed (as always).
1.Keppra
2.Carbamazapine
3.Lamotrigine -reduced & will reduce further
4.Oxcarbazine
5.Topiramate
6.Phenytion
7.Clobazam -reduced (very small amount)
8. Zonisamide
9. Epilim -NEW
The only side effect of Epilim is tiredness, which I am struggling with a bit at the moment.
I am still reducing Lamotrigine, so my seizures still happen. But Epilim is looking good at getting some better seizure control. Fingers crossed (as always).
Sunday 10 April 2011
I bet you don't even realise
People always say the phrase 'You don't know what goes on behind closed doors'
Well I bet you don't even realise........................
That I want to have another child.
That I can't go out the house without an adult to supervise me & Jamie.
Can't take Jamie to school, the park, swimming, even somewhere simple like shopping at Sainsbury's or take him out on his bike on my own.
I'm never going to be able to drive again.
I can't or will never be able to ride a bike again (you'll never forget how to ride a bike!) does it fucking matter now!?
I will only on average live for about 6yrs (if lucky) So 2.5 down, 3.5 to go!
I have to rely on my 4yr old son to use a speed dial phone when we are in the house on our own.
I have to employ someone to babysit me, so I can go out.
I have to have this person in my life, which is not by choice but necessity.
Can't use my trike any more.
I have to wear a walky talky alarm watch on my wrist just so I can go to the toilet on my own
Can't have a shower on my own (until the shower is changed)
Can't lock the bathroom door in other people's house's, unless Jamie comes to the toilet with me.
Can't do baking with my Jamie unless someone else is in the house.
Can't just pop out for chocolate.
Can't go on the bus.
Can't drink, unless I want to pass out and have more seizures.
Can't take the bins out, do gardening or any outdoor related stuff etc.
I don't have the chance to increase my son's interaction with other children and to help him make new friends.
I want to make new friends & socailise with my people of 'Choice'.
I can't do things on my own, have me time, go were I choose when I choose to do it.
Lee does all the cooking, ironing and most of the housework.
I have a volunteer to help me do my food shopping.
Can't exercise.
Can't do my job.
Spend a LOT of time in my house.
No one visits us, or if they do its very far and few between.
These things are all as a result of my seizures. If I was to attempt a lot of these things, it would put me and Jamie at serious risk. I can't just 'get on with it'.
I was thinking the other day 'what do other people that have uncontrolled epilepsy do!? do they have carer's? do they just risk it and go out? I was thinking I'd never just 'risk it' with Jamie, but what if I just went out on my own!? it would be really fucking scary (to start with) and I thought what could be the worst that could happen? but then I realised I could fall into the road.
If I was reading this I would think........Sounds like her arms and legs have been cut off!! Or how fucking depressing is all of that!!
The upside is:
I don't have to have someone wipe my arse or wash my fanny for me (just yet) well depends how lazy i'm feeling :-)
I can still feed myself the chocolate that someone else has gone out and got me. (well not at the moment as i'm getter LARGER)
Well I bet you don't even realise........................
That I want to have another child.
That I can't go out the house without an adult to supervise me & Jamie.
Can't take Jamie to school, the park, swimming, even somewhere simple like shopping at Sainsbury's or take him out on his bike on my own.
I'm never going to be able to drive again.
I can't or will never be able to ride a bike again (you'll never forget how to ride a bike!) does it fucking matter now!?
I will only on average live for about 6yrs (if lucky) So 2.5 down, 3.5 to go!
I have to rely on my 4yr old son to use a speed dial phone when we are in the house on our own.
I have to employ someone to babysit me, so I can go out.
I have to have this person in my life, which is not by choice but necessity.
Can't use my trike any more.
I have to wear a walky talky alarm watch on my wrist just so I can go to the toilet on my own
Can't have a shower on my own (until the shower is changed)
Can't lock the bathroom door in other people's house's, unless Jamie comes to the toilet with me.
Can't do baking with my Jamie unless someone else is in the house.
Can't just pop out for chocolate.
Can't go on the bus.
Can't drink, unless I want to pass out and have more seizures.
Can't take the bins out, do gardening or any outdoor related stuff etc.
I don't have the chance to increase my son's interaction with other children and to help him make new friends.
I want to make new friends & socailise with my people of 'Choice'.
I can't do things on my own, have me time, go were I choose when I choose to do it.
Lee does all the cooking, ironing and most of the housework.
I have a volunteer to help me do my food shopping.
Can't exercise.
Can't do my job.
Spend a LOT of time in my house.
No one visits us, or if they do its very far and few between.
These things are all as a result of my seizures. If I was to attempt a lot of these things, it would put me and Jamie at serious risk. I can't just 'get on with it'.
I was thinking the other day 'what do other people that have uncontrolled epilepsy do!? do they have carer's? do they just risk it and go out? I was thinking I'd never just 'risk it' with Jamie, but what if I just went out on my own!? it would be really fucking scary (to start with) and I thought what could be the worst that could happen? but then I realised I could fall into the road.
If I was reading this I would think........Sounds like her arms and legs have been cut off!! Or how fucking depressing is all of that!!
The upside is:
I don't have to have someone wipe my arse or wash my fanny for me (just yet) well depends how lazy i'm feeling :-)
I can still feed myself the chocolate that someone else has gone out and got me. (well not at the moment as i'm getter LARGER)
Wednesday 9 March 2011
Live life to the fullest?
Wish I was 'The Happy Person', but I'm just a miserable fucker!! oh well
'Live life to the fullest' is quite an easy thing to say really. But what is the fullest? and does anyone know of anyone that they think does that? and is it a realistic way to be? is it relative to each individual person? (eg beauty is in the eye of the beholder) how is it possible to do/be like that when there are always repercussions or consequences to your actions?
Does 'live life to the fullest' mean.....
Go off traveling around the world?
Sell your house
take your children out of school
money/dept
Making your house somewhere extra lovely to live or moving to a bigger more luxury house?
money/dept
stress of living with all the building work
moving away
Stop doing all the boring house work?
live in a shit pit
your kids go to school dirty in dirty clothes
get ill through using same plate 5 times!!
wear same knickers for a week, buy more knickers when you run out of clean ones
Do what ever you want to do? what ever it is?
money/dept
family & friends
your children
health
Moving and living abroad?
Leaving family
changing jobs
leaving support
Giving up or changing your job?
Security for you/your family
Mortgage and bills to pay
Responsibilities
Taking risks
What is it you want to do?
To be a good parent
To secure somewhere to live
You and your children to have friends & family close by
Your children to have a good education
To manage your money and not be in debt or to leave debts behind for others
To look after your family and make sure they are all okay
To spend time with the ones you love.
Is this what they mean by 'living your life to the fullest' 'living every day as it comes' or is this just what we all do? or am I completely missing the point? am I looking on the negative side of everything? I could do lots of things to live my life a bit fuller or try and change things to make me more of 'the happy person' but there would be repercussions or consequences.
Do we not do any of these things because we are scared too, do we just get used to our 'ground hog day' lives or just care too much about the repercussions or consequences to others or ourselves.
But then everyone always says as long as we've got our health!!
I'm fucked there then!!!!!
'Live life to the fullest' is quite an easy thing to say really. But what is the fullest? and does anyone know of anyone that they think does that? and is it a realistic way to be? is it relative to each individual person? (eg beauty is in the eye of the beholder) how is it possible to do/be like that when there are always repercussions or consequences to your actions?
Does 'live life to the fullest' mean.....
Go off traveling around the world?
Sell your house
take your children out of school
money/dept
Making your house somewhere extra lovely to live or moving to a bigger more luxury house?
money/dept
stress of living with all the building work
moving away
Stop doing all the boring house work?
live in a shit pit
your kids go to school dirty in dirty clothes
get ill through using same plate 5 times!!
wear same knickers for a week, buy more knickers when you run out of clean ones
Do what ever you want to do? what ever it is?
money/dept
family & friends
your children
health
Moving and living abroad?
Leaving family
changing jobs
leaving support
Giving up or changing your job?
Security for you/your family
Mortgage and bills to pay
Responsibilities
Taking risks
What is it you want to do?
To be a good parent
To secure somewhere to live
You and your children to have friends & family close by
Your children to have a good education
To manage your money and not be in debt or to leave debts behind for others
To look after your family and make sure they are all okay
To spend time with the ones you love.
Is this what they mean by 'living your life to the fullest' 'living every day as it comes' or is this just what we all do? or am I completely missing the point? am I looking on the negative side of everything? I could do lots of things to live my life a bit fuller or try and change things to make me more of 'the happy person' but there would be repercussions or consequences.
Do we not do any of these things because we are scared too, do we just get used to our 'ground hog day' lives or just care too much about the repercussions or consequences to others or ourselves.
But then everyone always says as long as we've got our health!!
I'm fucked there then!!!!!
The Happy Person
In a World where many have ulcers due to worry and stress
And where people are judged by material success
And since everyone answers to the reaper's call
The happy one is the most successful of all.
For the top job the happy one does not compete
And the happy one never feels sad in defeat
Not to be a hero or catch the big fish
Just to be happy in life is the happy one's wish.
The happy one can be a he or a she
But to find such a person do not look for me
Since like many others i feel weighed down by care
Though people like me they have never been rare.
The happy one everyone wishes to know
And the friends of the happy one in numbers grow
One who is not tainted by conceit or guile
And one who finds it easy to laugh and to smile.
by
Francis Duggan
Live Each Day To the Fullest
Sitting on the steps, looking across the lake,
Wondering why, life at times, can seem great.
But in that second, it took me to just think,
My life could change, faster than a blink.
Is this a reason why we should always cherish?
Not knowing when loved ones may suddenly perish.
Living everyday, like it was our very last,
for our days could be very long or go by very fast.
So I'll cherish and take nothing for granted,
not say things that shouldn't be chanted.
If this is the last day I have on this earth,
I accept my life, for what it's been worth.
Tomorrow isn't promised to young or old alike,
Today may be the last day I'm able to hold you tight.
Don't wait for tomorrow, do it all today,
If tomorrow never comes, you'll never regret a day.
Amy D. Liskey
Wondering why, life at times, can seem great.
But in that second, it took me to just think,
My life could change, faster than a blink.
Is this a reason why we should always cherish?
Not knowing when loved ones may suddenly perish.
Living everyday, like it was our very last,
for our days could be very long or go by very fast.
So I'll cherish and take nothing for granted,
not say things that shouldn't be chanted.
If this is the last day I have on this earth,
I accept my life, for what it's been worth.
Tomorrow isn't promised to young or old alike,
Today may be the last day I'm able to hold you tight.
Don't wait for tomorrow, do it all today,
If tomorrow never comes, you'll never regret a day.
Amy D. Liskey
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.
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.
Saturday 15 January 2011
Drugs update
List of drugs tried and tested. This is where I'm at now and I'm still on 3,6,7 & 8
1.Keppra
2.Carbamazapine
3.Lamotrigine -reduced & will reduce further
4.Oxcarbazine
5.Topiramate
6.Phenytion -reduced
7.Clobazam -reduced
8. Zonisamide -coming off it
9. Epilim -NEW
Zonisamide had horrible side effects and I was only on the lowest dose!! I was on 50mg, but consultant sad its possible to go up to 700mg!! It didn't make any impact on my seizures either.
So in process of coming off of that one.
Now I've got some of these drugs a bit out of my system and once I'm off of Zonisamide. I will be starting drug #9.
The depressing thing is, is this is basically my last hope drug!
There are 2 more, but both my consultant and my epilepsy nurse say they are pretty crap and they use them more to treat headaches, so there is not much point in trying either of them.
So Epilim is the last drug to try! if this doesn't have an impact on my seizures and has unbearable side effects, then I've gotta live with how my seizures are (I'm fucked!!!).
It's all about weighing up seizure control with side effects. Quality of life. Trying to get a livable balance between the two. All I know is I don't wanna remain or carry on as I am at the moment.
Wish I could be like one of those inspirational people that you read about in magazines and papers. To be an inspirational story, like raising awareness of brain tumours, raising money, what ever. Maybe not even those things, as wouldn't want the attention. But just being someone that can be amazing for my family. Being something other than just someone that drags their arse around feeling like shit! someone that does something other than rely on everyone and anyone. Someone that isn't a depressing cling on because I'm so lonely.
I read the headline of a story in the paper the other day '11yr old boy battles against a brain tumour and raises thousands for charity' (or something similar) only read the first bit of the story because I just felt like such a waste of space and that I can't even do anything, so didn't read the rest.
All I can do is prepare and plan for the worst and for when I die, how fucking depressing is that!
Do memory boxes for my boys and collect things etc for when I'm dead. Talking to grief support people and how to help Jamie. Planning and adapting the house for being in a wheel chair or some degree of disability as we do up the house. Talking to social services and having to sort out a team around Jamie and a social worker for me in the disability services. Talking to Lee about after I die and what I/we want with funeral stuff etc.
Some of you maybe thinking why all of this now? Well because we never know when its likely to get bad and because everything seems to have gone down hill and got so much worse so quickly over 8mnths.
Don't know if I've said before!? but my consultant has said in her career (15yrs) she has never had a patient with my illness to live longer than 6 yrs! and don't forget average life expectancy is 7.
I don't know how long I've got! so better to do it all sooner rather than later. I want my boys not to have to worry about any unnecessary stuff when I die. They will have enough to deal with.
Anyway not looking forward to starting this new drug and wasn't planning on sharing some of my depressing shit, but hey it just comes out.
1.Keppra
2.Carbamazapine
3.Lamotrigine -reduced & will reduce further
4.Oxcarbazine
5.Topiramate
6.Phenytion -reduced
7.Clobazam -reduced
8. Zonisamide -coming off it
9. Epilim -NEW
Zonisamide had horrible side effects and I was only on the lowest dose!! I was on 50mg, but consultant sad its possible to go up to 700mg!! It didn't make any impact on my seizures either.
So in process of coming off of that one.
Now I've got some of these drugs a bit out of my system and once I'm off of Zonisamide. I will be starting drug #9.
The depressing thing is, is this is basically my last hope drug!
There are 2 more, but both my consultant and my epilepsy nurse say they are pretty crap and they use them more to treat headaches, so there is not much point in trying either of them.
So Epilim is the last drug to try! if this doesn't have an impact on my seizures and has unbearable side effects, then I've gotta live with how my seizures are (I'm fucked!!!).
It's all about weighing up seizure control with side effects. Quality of life. Trying to get a livable balance between the two. All I know is I don't wanna remain or carry on as I am at the moment.
Wish I could be like one of those inspirational people that you read about in magazines and papers. To be an inspirational story, like raising awareness of brain tumours, raising money, what ever. Maybe not even those things, as wouldn't want the attention. But just being someone that can be amazing for my family. Being something other than just someone that drags their arse around feeling like shit! someone that does something other than rely on everyone and anyone. Someone that isn't a depressing cling on because I'm so lonely.
I read the headline of a story in the paper the other day '11yr old boy battles against a brain tumour and raises thousands for charity' (or something similar) only read the first bit of the story because I just felt like such a waste of space and that I can't even do anything, so didn't read the rest.
All I can do is prepare and plan for the worst and for when I die, how fucking depressing is that!
Do memory boxes for my boys and collect things etc for when I'm dead. Talking to grief support people and how to help Jamie. Planning and adapting the house for being in a wheel chair or some degree of disability as we do up the house. Talking to social services and having to sort out a team around Jamie and a social worker for me in the disability services. Talking to Lee about after I die and what I/we want with funeral stuff etc.
Some of you maybe thinking why all of this now? Well because we never know when its likely to get bad and because everything seems to have gone down hill and got so much worse so quickly over 8mnths.
Don't know if I've said before!? but my consultant has said in her career (15yrs) she has never had a patient with my illness to live longer than 6 yrs! and don't forget average life expectancy is 7.
I don't know how long I've got! so better to do it all sooner rather than later. I want my boys not to have to worry about any unnecessary stuff when I die. They will have enough to deal with.
Anyway not looking forward to starting this new drug and wasn't planning on sharing some of my depressing shit, but hey it just comes out.
Saturday 1 January 2011
I'm still here
Don't worry peeps I'm still alive!!!
Still having a shitty time of it. Bad side effects and bad seizures, so the best of both worlds!!!!
Bad headaches. I'm living off of codeine and chocolate at the moment and as much sleep as I can get. Trying hard, but haven't got much left to give. Once I've given Jamie half of what he needs (that's as much as I can) I have nothing left for anyone or anything else. Which is really making me sad at the moment.
This isn't me, this isn't what I'm about! struggling through every day.
Anyway 'Happy New Year' or at least lets really hope it is
x x
Still having a shitty time of it. Bad side effects and bad seizures, so the best of both worlds!!!!
Bad headaches. I'm living off of codeine and chocolate at the moment and as much sleep as I can get. Trying hard, but haven't got much left to give. Once I've given Jamie half of what he needs (that's as much as I can) I have nothing left for anyone or anything else. Which is really making me sad at the moment.
This isn't me, this isn't what I'm about! struggling through every day.
Anyway 'Happy New Year' or at least lets really hope it is
x x
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