List of drugs tried & tested so far
1.Keppra
2.Carbamazapine
3.Lamotrigine
4.Oxcarbazine
5.Topiramate
6.Phenytion
7.Clobazam
I am currently on 3,6 & 7
7 seems to be having the best impact on my seizures out of the ones I've tried so far or should I say 'at the moment'!!
My consultants plan is to try and get me on less drugs, but first she has to try and stabilise my seizures before she can pull me off any of them. She said the more drugs your on the more fatigue and tiredness you will suffer and just generally feel more 'rough' and struggle.
Clobazam is the drug that she is aiming to gain some stability with. It totally whacks you out (extreme tiredness & fatigue) for about 2 weeks when you first start it or when you go up a dose.
So am struggling a bit on this one. Initially it helped seizures loads, but now seems to be getting less helpful (fucker)
I've gone up one dose already since starting Clobazam, so watch this space.
Thursday 30 September 2010
Tuesday 28 September 2010
Soooo lonely
I think anyone that hasn't got or had an illness can appreciate how fucking lonely it is. How you have to deal with daily struggles, tears, med side effects, how it all affects the people you love etc (and there is loads more) on your own, on a daily bases and how you are left to pretty much 'get on with it'.
I am struggling to take Jamie to school now on my own, because I feel it's unsafe for both of us. It's too far to walk, can't trike it, the buses aren't ideal times in the mornings and I haven't the confidence to go on the bus on my own with Jamie anyway (the 'just in case' factor).
Every now and again the 'old' Jane in me say's 'fuck it, just get on the bus or what ever, just do it' But every time I'm brave and try to do something I have a big hideous seizure that injures me and causes me deep distress.
Anyway I'm lucky I have my sister, she will do everything and anything to help me if she can and she has been doing school run for me and Jamie.
But that's ALL I have in my day now, drop Jamie at school and pick him up and I can't even do that job properly (on my own). But I don't care how bad things get that will always be my thing I do for Jamie (my job for Jamie) It is isolating for me and my boys having to deal with all this stuff, everyday.
I don't tell people what's going on with appointments and meds anymore. I have so many appointments, I just wanna go in, deal with it, deal with what's said or decided and get on with it. It's so much easier that way, coz I don't have to worry about anyone else! I can just be selfish and focus on me and have Lee there as my support.
I just want to have normal chit chat with people and not talk about it every time I meet up with someone, It fucking depresses me. I wanna feel more normal and chat and laugh about silly shit. I also hate seeing the sadness in people's faces when I tell them stuff, so i'd rather not.
I do feel a bit sorry for my sis though as on our coffee day I do off load on her a bit, but then we chat about everything and I wouldn't not say.
My mum said a classic last week that made me smile. I was talking to her about all the crap stuff that had happened in the week (weekly crap update) and she said (in a soft way) 'oh you pooooor cow' I think a lot of people probably think that. But it was just the sweet way my mum said it.
Anyway really fucking tired now. Normally in bed by 9pm!!!
I am struggling to take Jamie to school now on my own, because I feel it's unsafe for both of us. It's too far to walk, can't trike it, the buses aren't ideal times in the mornings and I haven't the confidence to go on the bus on my own with Jamie anyway (the 'just in case' factor).
Every now and again the 'old' Jane in me say's 'fuck it, just get on the bus or what ever, just do it' But every time I'm brave and try to do something I have a big hideous seizure that injures me and causes me deep distress.
Anyway I'm lucky I have my sister, she will do everything and anything to help me if she can and she has been doing school run for me and Jamie.
But that's ALL I have in my day now, drop Jamie at school and pick him up and I can't even do that job properly (on my own). But I don't care how bad things get that will always be my thing I do for Jamie (my job for Jamie) It is isolating for me and my boys having to deal with all this stuff, everyday.
I don't tell people what's going on with appointments and meds anymore. I have so many appointments, I just wanna go in, deal with it, deal with what's said or decided and get on with it. It's so much easier that way, coz I don't have to worry about anyone else! I can just be selfish and focus on me and have Lee there as my support.
I just want to have normal chit chat with people and not talk about it every time I meet up with someone, It fucking depresses me. I wanna feel more normal and chat and laugh about silly shit. I also hate seeing the sadness in people's faces when I tell them stuff, so i'd rather not.
I do feel a bit sorry for my sis though as on our coffee day I do off load on her a bit, but then we chat about everything and I wouldn't not say.
My mum said a classic last week that made me smile. I was talking to her about all the crap stuff that had happened in the week (weekly crap update) and she said (in a soft way) 'oh you pooooor cow' I think a lot of people probably think that. But it was just the sweet way my mum said it.
Anyway really fucking tired now. Normally in bed by 9pm!!!
Shit summer
This year without out a doubt has been the hardest time of my life so far.
Haven't been on my Blog, even though it's my 'Therapy' because everything has been too emotional, horrible and hard for me to even think about it.
One of the main reasons being my seizures, over the 6 months or so they have just gone down hill big time! As you all know I have partial seizures that affected my right side. Well they've changed from twitching in my arm & leg and my arm coming up to my face, head turning etc. To being unable to balance whilst having a seizure even when sitting down, gurgling, choking noises and dribbling, my whole body trying to twist right round. I am still fully aware of what's going on around me, which in a way makes it so much worse. Because I know what's happening but am powerless to do anything about it.
I had a bad fall when I had a seizure back in June now I think! I cut up my shoulder pretty badly and hurt all down my left side. As I fell i just thought 'oh shit' and then when I was laying on the floor before my seizure finished I was just thinking 'please no one come over to me' It was the worst experience of my life.......Well so I thought! (other bad seizure crap has happened) but don't wanna go into all that.
After that fall it really affected me, in the fact that I didn't want to go out because I would never know if it would be a bad seizure day! (I still don't) I was worried about my safety and more importantly Jamie's safety when we would go out. Even sat on the floor I can't balance I still fall and hurt myself. So it's now become un-safe for me to go on my trike as I would just fall off if I had a seizure. For weeks after I wouldn't engage in conversation with anyone other than family just 'in case'! I wouldn't go out on my own unless I really had to (taking Jamie to school) it has been hideous, lonely and scary.....and still is, oh and I still have all those feelings, but maybe not to that extent now.
I've shut myself away and have been trying to deal with the shit day by day. Because my med's still aren't controlling my seizures and they have become quite bad, I now have to tell people so that they don't totally freak if it happens in front of them. Having to explain to people what might happen has been a really hard thing to do as well, I don't wanna have to be explaining something to people that I am finding really hard and emotional to deal with. I hate feeling like I have to tell people and its not people I chose to tell, its people I HAVE to tell (e.g Jamie's school etc)
Anyway enough about all of my hideous seizure crap.
Now the Drugs...... The other reason for not being on my blog is the extreme tiredness from my drugs. At one point I was on 4 drugs at the same time, down to 3 now. I am still suffering from very bad tiredness (its a bit better), but thought I'm ready to get back on here now and do some ranting of my shit.
Oh and I'm on drug number 7 and still going......Consultant said I will have to live with my Epilepsy, but hopefully we can aim to get the 'bad' seizures under control, but that may not happen either. But said all we can do is keep trying.
She has arranged a 2nd opinion with an epilepsy consultant for me, as she is my neurologist that deals with epilepsy. So she thought the other consultant might have a bit more experience to help me a bit more, but I think it will just be a case of 'well which drugs do you wanna try me on now?'
So much has happened in the last 8 mnths (in terms of my illness). I usually see my consultant every 3-6 mnths depending on how my meds and seizures are and I've been seeing her once a mnth for the last 6 mnths now.
Feel super sad that my boys have to live with this, with me. But they are both really brave and I'm glad they are there. Thank fuck I have the love and support of all my family.
Anyway its all been extremely fucking shit for all of us and that's all I want to say about it all. So lets leave it at that.
Haven't been on my Blog, even though it's my 'Therapy' because everything has been too emotional, horrible and hard for me to even think about it.
One of the main reasons being my seizures, over the 6 months or so they have just gone down hill big time! As you all know I have partial seizures that affected my right side. Well they've changed from twitching in my arm & leg and my arm coming up to my face, head turning etc. To being unable to balance whilst having a seizure even when sitting down, gurgling, choking noises and dribbling, my whole body trying to twist right round. I am still fully aware of what's going on around me, which in a way makes it so much worse. Because I know what's happening but am powerless to do anything about it.
I had a bad fall when I had a seizure back in June now I think! I cut up my shoulder pretty badly and hurt all down my left side. As I fell i just thought 'oh shit' and then when I was laying on the floor before my seizure finished I was just thinking 'please no one come over to me' It was the worst experience of my life.......Well so I thought! (other bad seizure crap has happened) but don't wanna go into all that.
After that fall it really affected me, in the fact that I didn't want to go out because I would never know if it would be a bad seizure day! (I still don't) I was worried about my safety and more importantly Jamie's safety when we would go out. Even sat on the floor I can't balance I still fall and hurt myself. So it's now become un-safe for me to go on my trike as I would just fall off if I had a seizure. For weeks after I wouldn't engage in conversation with anyone other than family just 'in case'! I wouldn't go out on my own unless I really had to (taking Jamie to school) it has been hideous, lonely and scary.....and still is, oh and I still have all those feelings, but maybe not to that extent now.
I've shut myself away and have been trying to deal with the shit day by day. Because my med's still aren't controlling my seizures and they have become quite bad, I now have to tell people so that they don't totally freak if it happens in front of them. Having to explain to people what might happen has been a really hard thing to do as well, I don't wanna have to be explaining something to people that I am finding really hard and emotional to deal with. I hate feeling like I have to tell people and its not people I chose to tell, its people I HAVE to tell (e.g Jamie's school etc)
Anyway enough about all of my hideous seizure crap.
Now the Drugs...... The other reason for not being on my blog is the extreme tiredness from my drugs. At one point I was on 4 drugs at the same time, down to 3 now. I am still suffering from very bad tiredness (its a bit better), but thought I'm ready to get back on here now and do some ranting of my shit.
Oh and I'm on drug number 7 and still going......Consultant said I will have to live with my Epilepsy, but hopefully we can aim to get the 'bad' seizures under control, but that may not happen either. But said all we can do is keep trying.
She has arranged a 2nd opinion with an epilepsy consultant for me, as she is my neurologist that deals with epilepsy. So she thought the other consultant might have a bit more experience to help me a bit more, but I think it will just be a case of 'well which drugs do you wanna try me on now?'
So much has happened in the last 8 mnths (in terms of my illness). I usually see my consultant every 3-6 mnths depending on how my meds and seizures are and I've been seeing her once a mnth for the last 6 mnths now.
Feel super sad that my boys have to live with this, with me. But they are both really brave and I'm glad they are there. Thank fuck I have the love and support of all my family.
Anyway its all been extremely fucking shit for all of us and that's all I want to say about it all. So lets leave it at that.
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