violet_sky Posted April 25, 2010 Share Posted April 25, 2010 I just found this page, thought it might be of interest. The clots that were in my brain were in the parietal region of the brain. http://www.epilepsy.org.au/epilepsy_explained2.asp Wow, that's very interesting. Does this correspond with how you see your situation now? Like do you perceive pain differently than before your stroke? And did it affect your sense of touch somehow? The body and space awareness problem sounds weird. Although, I think may have that, too. But then it's inborn. My favourite accident there is hitting my elbow on doorknobs. Makes me think of this, too: Link to comment Share on other sites More sharing options...
nico_collard Posted April 25, 2010 Author Share Posted April 25, 2010 Wow, that's very interesting. Does this correspond with how you see your situation now? Like do you perceive pain differently than before your stroke? And did it affect your sense of touch somehow? The body and space awareness problem sounds weird. Although, I think may have that, too. But then it's inborn. My favourite accident there is hitting my elbow on doorknobs. Makes me think of this, too: I think I feel pain more than I did before, but that could be because I seem to hurt myself more often. I'm definitely not as aware of my body and where it is now. For example, I almost stapled my thumb last night, and I repeatedly slam my arm in doors, and because I'm on anti coagulants I bruise a lot easier than I normally do. The way I touch things isn't quite as direct as well. And my right leg and arm always feel weird, like they don't really belong to me... Admittedly the problems I have with my body are with the right side, which isn't my dominant side. It's also the side I had the worse stroke, but I'm sure I wasn't anywhere near as uncoordinated before the strokes. I have had problems with thinking, but seeing as the psychologist hasn't bothered to send me the results of the most recent neuropsychological assessment I don't know if I've improved or not. But anyways... Link to comment Share on other sites More sharing options...
Dark Angel Posted April 25, 2010 Share Posted April 25, 2010 I just found this page, thought it might be of interest. The clots that were in my brain were in the parietal region of the brain. http://www.epilepsy.org.au/epilepsy_explained2.asp very interesting! "There are 40 different types of seizures" HOLY F**** -Petit-mal: GOD my neck can hurt after that. But i still dont wanna call it a seizure "Simple Partial Seizures - These seizures are often called an ’aura’ or warning by the person experiencing them as they can precede a complex partial or tonic clonic seizure." "Motor – jerking of a limb, twitching of the face" i use to just ignore tham... if i can... "Psychic – deja'vu, hallucinations (visual, sound, taste or smell), emotions such as fear" Thats not a seizure "Complex Partial Seizures - Here consciousness or awareness is altered, producing a vague, confused or dreamlike appearance. The person may respond, but often inappropriately, and display strange, random or repetitive behaviour. This behaviour commonly presents as chewing, fidgeting, taking off clothes, walking around or mumbling." and i ALWAYS gets kicked to bed or lay down when i have it when im around fam. Generalised Tonic Clonic Seizures - Reading about grand-mal always makes me cry... Absence Seizures - why do they call it a seizure. Ive had an argument w. a doc about that. I wont call it a seizure cos then i get... well more seizures than i already have. Know i get a few diffrent types of seizures... but that one.... wont call t one Myoclonic Seizures - :mad3: feels like getting electric shock. I have broken MANY things when i have them. Interupting my sleep ect. i sometimes goes online when i have em Another thing i can HATE the epo. hosp. for is that they say that... another thing i get... is cos of my epilepsy... Link to comment Share on other sites More sharing options...
nico_collard Posted April 25, 2010 Author Share Posted April 25, 2010 very interesting! "There are 40 different types of seizures" HOLY F**** -Petit-mal: GOD my neck can hurt after that. But i still dont wanna call it a seizure "Simple Partial Seizures - These seizures are often called an ’aura’ or warning by the person experiencing them as they can precede a complex partial or tonic clonic seizure." "Motor – jerking of a limb, twitching of the face" i use to just ignore tham... if i can... "Psychic – deja'vu, hallucinations (visual, sound, taste or smell), emotions such as fear" Thats not a seizure "Complex Partial Seizures - Here consciousness or awareness is altered, producing a vague, confused or dreamlike appearance. The person may respond, but often inappropriately, and display strange, random or repetitive behaviour. This behaviour commonly presents as chewing, fidgeting, taking off clothes, walking around or mumbling." and i ALWAYS gets kicked to bed or lay down when i have it when im around fam. Generalised Tonic Clonic Seizures - Reading about grand-mal always makes me cry... Absence Seizures - why do they call it a seizure. Ive had an argument w. a doc about that. I wont call it a seizure cos then i get... well more seizures than i already have. Know i get a few diffrent types of seizures... but that one.... wont call t one Myoclonic Seizures - :mad3: feels like getting electric shock. I have broken MANY things when i have them. Interupting my sleep ect. i sometimes goes online when i have em Another thing i can HATE the epo. hosp. for is that they say that... another thing i get... is cos of my epilepsy... Psychic seizures sounds so pathetic... Then again, you should've seen the ones I had last week... they didn't really look like seizures, then again, the ones I had last year didn't look like grand mal and that's pretty much why the nurses didn't bother to call the senior doctors to look at me... Link to comment Share on other sites More sharing options...
Dark Angel Posted April 25, 2010 Share Posted April 25, 2010 The doc. might be right about the "xtra" thing i get after a ""Complex Partial Seizures" Psychic seizures sounds so pathetic... Then again, you should've seen the ones I had last week... they didn't really look like seizures, then again, the ones I had last year didn't look like grand mal and that's pretty much why the nurses didn't bother to call the senior doctors to look at me... the psychic onse is the reasons for why i have tons of candleslights with some kinda scent and chewing gum.. none of it works though. deja'vu... have got that a lot lately and im always dizzy after how can a grand mal not look like a grand mal? Link to comment Share on other sites More sharing options...
demonkissangel69 Posted April 25, 2010 Share Posted April 25, 2010 Hey all! Seeing as there's a few of us who suffer from epilepsy (or technically don't have epilepsy but do have seizures), I thought we should have our own little space where we can talk about it... And of course, we welcome any of our friends! So, who's with me? ME ME ME ME ME ME ME ME Can I join guys? I care:huglove:I can't believe the meds are so expensive in Denmark:shocked: This is awful:( Some of the meds in Australia can be expensive too if you arent on benefits.. I'm on Lamictal (350mg daily) and Epilim (1800mgs daily) and I was told that if I werent on benefits the Lamictal would cost over $200 AUS a month and the epilim over $100 every 2-3 months .. will check the prices though Link to comment Share on other sites More sharing options...
Dark Angel Posted April 25, 2010 Share Posted April 25, 2010 ME ME ME ME ME ME ME ME Some of the meds in Australia can be expensive too if you arent on benefits.. I'm on Lamictal (350mg daily) and Epilim (1800mgs daily) and I was told that if I werent on benefits the Lamictal would cost over $200 AUS a month and the epilim over $100 every 2-3 months .. will check the prices though Lamictal costs A LOT!!!!! (and tasts like crap) Didnt know there were other peeps here whos unlucky to have it. Born with it? Link to comment Share on other sites More sharing options...
demonkissangel69 Posted April 25, 2010 Share Posted April 25, 2010 Lamictal costs A LOT!!!!! (and tasts like crap) Didnt know there were other peeps here whos unlucky to have it. Born with it? Amen @ Lamictal tasting like crap .. I was at my bro's place and he ran out of milk .. my tablets tasted ewwww you cannot describe it to other people who dont take the tablets or have the side effects of the seizures ... I wasnt born with epilepsy but after having meningitis at 2 months old.. it damaged my brain a lil bit and didnt have it "officially diagnosed" untill I was 11 and had a seizure in class Now I cant work ... much ... but got the best bf to look after me and he came to see Mika when he doesnt like him much Link to comment Share on other sites More sharing options...
Dark Angel Posted April 25, 2010 Share Posted April 25, 2010 Amen @ Lamictal tasting like crap .. I was at my bro's place and he ran out of milk .. my tablets tasted ewwww you cannot describe it to other people who dont take the tablets or have the side effects of the seizures ... I wasnt born with epilepsy but after having meningitis at 2 months old.. it damaged my brain a lil bit and didnt have it "officially diagnosed" untill I was 11 and had a seizure in class Now I cant work ... much ... but got the best bf to look after me and he came to see Mika when he doesnt like him much And the tablets are so HUGE (some of the copy) I got sick the first time i tried em and still does. Guess you have tried to have too much lamictal in your blood too? Gets all dizzy, double vision, can barely walk at all, head is spinning and SICK! Ive tried it a few times... so bad so ive been taken to the ER a few times cos of too much. They just cant find the right dose. have been all the way down on 100 morning and 200 evening and up to 800 morning and evening Gotta suck to be born with it? im sorry about that i first got it "official" when i was 20. They said 2 years before that i prob. had it.. but i went to the uk so they couldnt test me untill i got back. Sorry that you cant work... but not the only one. cant work too.. not allowed same with even get an education Gotta say you are lucky you have a bf who looks after you. My ex said (when i was with him) to the epilepsy hosp. here in denmark that he would look after me and take care fo me if i had a seizure or looked like i was about to have one but he did NADA! Lucky enough to know what kinda epilepsy you have? Link to comment Share on other sites More sharing options...
nico_collard Posted April 27, 2010 Author Share Posted April 27, 2010 the psychic onse is the reasons for why i have tons of candleslights with some kinda scent and chewing gum.. none of it works though. deja'vu... have got that a lot lately and im always dizzy after how can a grand mal not look like a grand mal? They didn't see the seizures I was having as actual seizures, that's what i meant... Wow, I'm really struggling with language the last few days! ME ME ME ME ME ME ME ME Some of the meds in Australia can be expensive too if you arent on benefits.. I'm on Lamictal (350mg daily) and Epilim (1800mgs daily) and I was told that if I werent on benefits the Lamictal would cost over $200 AUS a month and the epilim over $100 every 2-3 months .. will check the prices though Yay! Glad you could join us! I'm glad mine taste okay, and they're not that expensive... Amen @ Lamictal tasting like crap .. I was at my bro's place and he ran out of milk .. my tablets tasted ewwww you cannot describe it to other people who dont take the tablets or have the side effects of the seizures ... I wasnt born with epilepsy but after having meningitis at 2 months old.. it damaged my brain a lil bit and didnt have it "officially diagnosed" untill I was 11 and had a seizure in class Now I cant work ... much ... but got the best bf to look after me and he came to see Mika when he doesnt like him much Your BF is awesome for coming to Mika... Anyways, gotta run to a staff meeting... Link to comment Share on other sites More sharing options...
demonkissangel69 Posted April 27, 2010 Share Posted April 27, 2010 It's tricky to say what kind of epilepsy I have because of the damaged tissue is small and the seizures are of unknown origin ... I have complex/simple, absence, myoclonic jerks, and generalised seizures (but I've been seizure free for a week I am lucky to have my bf... I'm glad mine taste okay, and they're not that expensive... Your BF is awesome for coming to Mika... He is awesome ... (both David & Mika) cant wait to see u guys again Link to comment Share on other sites More sharing options...
Dark Angel Posted April 27, 2010 Share Posted April 27, 2010 It's tricky to say what kind of epilepsy I have because of the damaged tissue is small and the seizures are of unknown origin ... I have complex/simple, absence, myoclonic jerks, and generalised seizures (but I've been seizure free for a week I am lucky to have my bf... He is awesome ... (both David & Mika) cant wait to see u guys again Free for a week? sounds like you have a lot too. But congratz the longest ive been seizure free was from around feb. till lately... was seizure-free when i was "high" on Mika cos of going to gigs But have started to get a few each week lately... will maybe get better again when i get news (someday) about the festival show he will do here maybe They have told me i have photosensative epilepsy... so flashlight and things like that isnt the best thing for me. So going to shows can give me a seizure but ive survived Last seizure kinda thing i had was today... the myoclonic jerks thingys. But im use to em. Just damn annoying! Link to comment Share on other sites More sharing options...
Dark Angel Posted April 27, 2010 Share Posted April 27, 2010 They didn't see the seizures I was having as actual seizures, that's what i meant... Wow, I'm really struggling with language the last few days! what kinda hosp. is that? You should come to Denmark and join me on the epilepsy hospital someday... even though they dont see your seizures... only if they happens to be around or you have em in your room Link to comment Share on other sites More sharing options...
nico_collard Posted April 28, 2010 Author Share Posted April 28, 2010 It's tricky to say what kind of epilepsy I have because of the damaged tissue is small and the seizures are of unknown origin ... I have complex/simple, absence, myoclonic jerks, and generalised seizures (but I've been seizure free for a week I am lucky to have my bf... He is awesome ... (both David & Mika) cant wait to see u guys again Out of curiosity (and you don't have to answer if you don't want to), what part of your brain is affected? And yay for no seizures this week! For sure! Can't wait to see you and the others either! They have told me i have photosensative epilepsy... so flashlight and things like that isnt the best thing for me. So going to shows can give me a seizure but ive survived Last seizure kinda thing i had was today... the myoclonic jerks thingys. But im use to em. Just damn annoying! I was wondering about how you'd cope with flashing lights... the last time I was right near flashing lights was at the Mika concert () but I didn't have any sort of seizure... I guess that means I'm not photosensitive... what kinda hosp. is that? You should come to Denmark and join me on the epilepsy hospital someday... even though they dont see your seizures... only if they happens to be around or you have em in your room It's just a normal hospital, though I'm actually in a regional area so we don't have as many specialists as a larger hospital does... Seizures aren't something the nurses often come across in the maternity ward, as that's where they put me before I had the seizures. They didn't put me in with someone who had just had a baby though. After a while they moved me to another part of the hospital (and I can't think of the name! ) Link to comment Share on other sites More sharing options...
demonkissangel69 Posted April 28, 2010 Share Posted April 28, 2010 Free for a week? sounds like you have a lot too. But congratz the longest ive been seizure free was from around feb. till lately... was seizure-free when i was "high" on Mika cos of going to gigs But have started to get a few each week lately... will maybe get better again when i get news (someday) about the festival show he will do here maybe They have told me i have photosensative epilepsy... so flashlight and things like that isnt the best thing for me. So going to shows can give me a seizure but ive survived Last seizure kinda thing i had was today... the myoclonic jerks thingys. But im use to em. Just damn annoying! Luckily I didnt have a seizure @ the Sydney Mika gig last year ... sorry to hear you had a myoclonic jerk .. I so hate em!!! Out of curiosity (and you don't have to answer if you don't want to), what part of your brain is affected? And yay for no seizures this week! For sure! Can't wait to see you and the others either! After a while they moved me to another part of the hospital (and I can't think of the name! ) I'm not sure what the scientific name of the affected part is but its on the right side.. When you got moved to another part of the hospital was it the Stroke Unit?? Link to comment Share on other sites More sharing options...
nico_collard Posted April 28, 2010 Author Share Posted April 28, 2010 I'm not sure what the scientific name of the affected part is but its on the right side.. When you got moved to another part of the hospital was it the Stroke Unit?? Fair enough... only reason I know what the go is with my brain is cause they kept talking about it... Not in Orange it wasn't... I was in high dependency, then they moved me to a ward that had a stroke section in it, then I went up to ICU... then when I was in Sydney I was in the Neuro ICU, then I went to the acute stroke ward (I think that's what the called it).. Okay, I'm seriously gonna have to get off, I've got a headache and it's pretty much around my left eye and behind it Looking at the screen isn't helping... Link to comment Share on other sites More sharing options...
crazyaboutmika Posted April 28, 2010 Share Posted April 28, 2010 Fair enough... only reason I know what the go is with my brain is cause they kept talking about it... Not in Orange it wasn't... I was in high dependency, then they moved me to a ward that had a stroke section in it, then I went up to ICU... then when I was in Sydney I was in the Neuro ICU, then I went to the acute stroke ward (I think that's what the called it).. Okay, I'm seriously gonna have to get off, I've got a headache and it's pretty much around my left eye and behind it Looking at the screen isn't helping... I hope you feel better now! Link to comment Share on other sites More sharing options...
Dark Angel Posted April 28, 2010 Share Posted April 28, 2010 Out of curiosity (and you don't have to answer if you don't want to), what part of your brain is affected? And yay for no seizures this week! For sure! Can't wait to see you and the others either! I was wondering about how you'd cope with flashing lights... the last time I was right near flashing lights was at the Mika concert () but I didn't have any sort of seizure... I guess that means I'm not photosensitive... They think it was because i was so happy that it didnt effect me the more happy = the less seizures and i was VERY VERY happy! Link to comment Share on other sites More sharing options...
Dark Angel Posted April 28, 2010 Share Posted April 28, 2010 Fair enough... only reason I know what the go is with my brain is cause they kept talking about it... Not in Orange it wasn't... I was in high dependency, then they moved me to a ward that had a stroke section in it, then I went up to ICU... then when I was in Sydney I was in the Neuro ICU, then I went to the acute stroke ward (I think that's what the called it).. Okay, I'm seriously gonna have to get off, I've got a headache and it's pretty much around my left eye and behind it Looking at the screen isn't helping... Hope you will feel better soon. I hate it when i get that and normal asprins doesnt hlp on it... but lemme gues you were tired and there wasnt much light around you? Link to comment Share on other sites More sharing options...
nico_collard Posted April 29, 2010 Author Share Posted April 29, 2010 I hope you feel better now! Oh, I do! So much better! Hope you will feel better soon. I hate it when i get that and normal asprins doesnt hlp on it... but lemme gues you were tired and there wasnt much light around you? Feeling much better, though I have a bit of a cold comimg on I took some paracetemol last night and it did nothing (Unlucky me, I'm not allowed to take asprin cause it'll make my blood even thinner!). But you're right, I was tired, though the light was the normal one i have in my room... maybe I need to get a brighter light in there... I'm starting to think that I might need to get my eyes retested cause I seem to get a bit of a headache after working on the computer for a while... Link to comment Share on other sites More sharing options...
Dark Angel Posted April 29, 2010 Share Posted April 29, 2010 Oh, I do! So much better! Feeling much better, though I have a bit of a cold comimg on I took some paracetemol last night and it did nothing (Unlucky me, I'm not allowed to take asprin cause it'll make my blood even thinner!). But you're right, I was tired, though the light was the normal one i have in my room... maybe I need to get a brighter light in there... I'm starting to think that I might need to get my eyes retested cause I seem to get a bit of a headache after working on the computer for a while... Maybe you should consider that yeah Would like to have some sleep... but cant and nooooooot good when you ahve epilepsy where you NEED just some sleep Link to comment Share on other sites More sharing options...
nico_collard Posted April 29, 2010 Author Share Posted April 29, 2010 Maybe you should consider that yeah Would like to have some sleep... but cant and nooooooot good when you ahve epilepsy where you NEED just some sleep You poor thing! Why aren't you getting any sleep? Link to comment Share on other sites More sharing options...
Dark Angel Posted April 29, 2010 Share Posted April 29, 2010 You poor thing! Why aren't you getting any sleep? cant... insomnia... But think i will mention it to my doc. when im going to see one of em today. They want me back on something called Tramadol (Tramadol is a synthetic stripped-down piperidine-analog of the phenantherane alkaloid codeine and, as such, is an opioid and also a prodrug codeine is metabolized to morphine) and Valium ("is a benzodiazepine derivative drug. It is commonly used for treating anxiety, insomnia, seizures, muscle spasms, restless legs syndrome, obsessive compulsive disorder) I hope they dont want me to take em together again! Link to comment Share on other sites More sharing options...
nico_collard Posted April 29, 2010 Author Share Posted April 29, 2010 Ooooh... will answer properly when i get home... Link to comment Share on other sites More sharing options...
Dark Angel Posted April 29, 2010 Share Posted April 29, 2010 I think my writing will be a lil "off" later tonight cos i got new meds. Link to comment Share on other sites More sharing options...
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