nico_collard Posted April 23, 2010 Share Posted April 23, 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? Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 ME ME ME ME ME!!!!!!! Im in 120%... can i move in? hate hate hate it!!!!!! Great to have a place to talk about it Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 a true pain! can almost "destroy" your life... sucks haveing seizures cos of the pain and lack of memorie after and other side effects 6 years and still not under control never finished school cos of it... not allowed to work, get an education and get a drivers licence! Not even allowed to live alone... but i do! And the price for my meds... more than 2000 dkkr (232£ / 356$) A MONTH! Link to comment Share on other sites More sharing options...
nico_collard Posted April 23, 2010 Author Share Posted April 23, 2010 For sure! This'll be a great place for us to talk seizures All I need is a place (and people to talk with) for Factor V Leiden and I'm all set! Link to comment Share on other sites More sharing options...
nico_collard Posted April 23, 2010 Author Share Posted April 23, 2010 a true pain! can almost "destroy" your life... sucks haveing seizures cos of the pain and lack of memorie after and other side effects 6 years and still not under control never finished school cos of it... not allowed to work, get an education and get a drivers licence! Not even allowed to live alone... but i do! And the price for my meds... more than 2000 dkkr (232£ / 356$) A MONTH! Holy crap that's pricy! I just got more meds for seizures and that cost $33, and that was with the discount I get for getting unemployment benefits. The expensive one for me are the blood thinners, each container is about $17 each I manage to get it for $10 so that's good. Not having a licence really sh!ts me off... At least I can get mine back, but it's so hard to get it back after they cancel it! I would've been better off getting pulled over and losing my licence cause of drink driving or speeding! Seems they only have to do some stupid course and then they get it back! Link to comment Share on other sites More sharing options...
crazyaboutmika Posted April 23, 2010 Share Posted April 23, 2010 Can I join guys? I care:huglove: I can't believe the meds are so expensive in Denmark:shocked: This is awful:( Link to comment Share on other sites More sharing options...
nico_collard Posted April 23, 2010 Author Share Posted April 23, 2010 Can I join guys? I care:huglove:I can't believe the meds are so expensive in Denmark:shocked: This is awful:( Of course you can! I can't believe how expensive they are in Denmark! DA, what medication are you on? Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 Holy crap that's pricy! I just got more meds for seizures and that cost $33, and that was with the discount I get for getting unemployment benefits. The expensive one for me are the blood thinners, each container is about $17 each I manage to get it for $10 so that's good. Not having a licence really sh!ts me off... At least I can get mine back, but it's so hard to get it back after they cancel it! I would've been better off getting pulled over and losing my licence cause of drink driving or speeding! Seems they only have to do some stupid course and then they get it back! Lucky it only costs you that!!!! how long does the meds. last ? have to wait 2 years here to get it back if you have 1 seizure And think someone also mentioned when i was hospitalised (epi. hosp. in Jan/Feb... and they want me back ) that they have to do a test drivers test again Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 Can I join guys? I care:huglove:I can't believe the meds are so expensive in Denmark:shocked: This is awful:( im getting 2 and im not allowed to get copy meds... thats one of the reasons... some of the copy meds. are cheaper... Of course you can! I can't believe how expensive they are in Denmark! DA, what medication are you on? Lamotrigine/Lamictal (600 morning 500 evening) Levetiracetam/Keppra (1000 morning 1500 evening) Link to comment Share on other sites More sharing options...
nico_collard Posted April 23, 2010 Author Share Posted April 23, 2010 Lucky it only costs you that!!!! how long does the meds. last ? have to wait 2 years here to get it back if you have 1 seizure And think someone also mentioned when i was hospitalised (epi. hosp. in Jan/Feb... and they want me back ) that they have to do a test drivers test again There's 100 days worth in a box. I would hate it if they made me wait 2 years... There's practically no public transport here so it would be almost impossible to get anywhere without having a licence! im getting 2 and im not allowed to get copy meds... thats one of the reasons... some of the copy meds. are cheaper... Lamotrigine/Lamictal (600 morning 500 evening) Levetiracetam/Keppra (1000 morning 1500 evening) Why can't you get the cheaper meds? Don't they make cheaper ones? Those seem like high dosages... Mine's only 200mg, then again, mine's slow release... I just looked up side effects for carbemazepine, and the side effects are: # drowsiness # headaches and migraines # motor coordination impairment # decrease in a person's alcohol tolerance. # blurry or double vision F**k, my vision is a little blurry... and I guess I'm not gonna see any real difference in co-ordination, cause my co-ordination is crap anyways! Link to comment Share on other sites More sharing options...
crazyaboutmika Posted April 23, 2010 Share Posted April 23, 2010 In France, on some meds you get moneyback from social security but they're giving less and less money back...no brands are less expensive and they are suposed tobe the same so I don't understand why they won't let you use them, DA:shocked: Link to comment Share on other sites More sharing options...
nico_collard Posted April 23, 2010 Author Share Posted April 23, 2010 In France, on some meds you get moneyback from social security but they're giving less and less money back...no brands are less expensive and they are suposed tobe the same so I don't understand why they won't let you use them, DA:shocked: It's wrong... Anyway girls, I really need to get to bed. I have to work tomorrow! Goodnight! Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 There's 100 days worth in a box. I would hate it if they made me wait 2 years... There's practically no public transport here so it would be almost impossible to get anywhere without having a licence! Why can't you get the cheaper meds? Don't they make cheaper ones? Those seem like high dosages... Mine's only 200mg, then again, mine's slow release... I just looked up side effects for carbemazepine, and the side effects are: # drowsiness # headaches and migraines # motor coordination impairment # decrease in a person's alcohol tolerance. # blurry or double vision F**k, my vision is a little blurry... and I guess I'm not gonna see any real difference in co-ordination, cause my co-ordination is crap anyways! a lil blurry? maybe lay down a bit so it wont get worse? its possible to get cheaper meds. but im not allowed to get em now cos theres some xtra stuff in some of em that can make the meds. level in my blood go up and down and give me more seizures or feel very dizzy so i cant walk cos of too much creepy side effecs! double vision? thats not good when driving this is only some of the side effects i can have Lamotrigine: -Worsening of seizures (gives meds. against seizures that can give you seizures... i dont get it ) -Depression -Anxiety -Suicidal thinking or behavior -Loss of concentration (ohhhhhhhh yeah) -Dizzyness (really... havent notised ) -ADHD Keppra: -feeling of constant movement of self or surroundings and sensation of spinning (is Keppra a new name for extacy? ) -unusual drowsiness or sleepiness -depression -loss of memory or problems with memory -mood or mental changes (tell me about it....) -nervousness (me nervous... never... ) -paranoia (ok that on makes me laugh) -sexual urge () Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 In France, on some meds you get moneyback from social security but they're giving less and less money back...no brands are less expensive and they are suposed tobe the same so I don't understand why they won't let you use them, DA:shocked: They use to do that here too... but the docs. has givin me 5 years where i dont have to pay for my meds. The ask thingy has changed that though. I have to pay for 1 month of meds. myself Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 It's wrong... Anyway girls, I really need to get to bed. I have to work tomorrow! Goodnight! Nighty night hun and take care! Link to comment Share on other sites More sharing options...
guylainem123 Posted April 23, 2010 Share Posted April 23, 2010 my father had what they called "noctunal epilepsy" it only happened twice when he was sleeping at night. he had to take meds and all was under control. he even managed to get his licensed back at 80 years old... so don't give up girls! Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 my father had what they called "noctunal epilepsy" it only happened twice when he was sleeping at night. he had to take meds and all was under control. he even managed to get his licensed back at 80 years old... so don't give up girls! They were testing me for that when i was hospitalised w. a cam over my bed Glad he is better. Get it bad at 80... WOW!!!!!!!! thats amazing Dont give up... i think i have... they have started to talk about i should go on pension Link to comment Share on other sites More sharing options...
iadoremika Posted April 23, 2010 Share Posted April 23, 2010 I don't have epilepsy or seizures, but I saw one on TV and it terrified me. Link to comment Share on other sites More sharing options...
violet_sky Posted April 23, 2010 Share Posted April 23, 2010 my father had what they called "noctunal epilepsy" it only happened twice when he was sleeping at night. he had to take meds and all was under control. he even managed to get his licensed back at 80 years old... so don't give up girls! Here some 80 year olds without seizure problems return their license for safety reasons and I can't say I'm against it (especially not after that 84 year old crashed my car in the parking lot while I was not even there ) What do you have to do to get your license back after being diagnosed with epilepsy? Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 I don't have epilepsy or seizures, but I saw one on TV and it terrified me. I havent seen a seizure and dont wanna see one. Have heard how my own seizures looks like and scared the s*** outta me. oe of the reasos for why i didt wated to get hositalised for it was cos i was ervous to see other peeps have seizurs Link to comment Share on other sites More sharing options...
Dark Angel Posted April 23, 2010 Share Posted April 23, 2010 Here some 80 year olds without seizure problems return their license for safety reasons and I can't say I'm against it (especially not after that 84 year old crashed my car in the parking lot while I was not even there ) What do you have to do to get your license back after being diagnosed with epilepsy? Dont have a seizure in a specific time... have to be seizure-free for 2 years here... Link to comment Share on other sites More sharing options...
guylainem123 Posted April 23, 2010 Share Posted April 23, 2010 They were testing me for that when i was hospitalised w. a cam over my bed Glad he is better. Get it bad at 80... WOW!!!!!!!! thats amazing Dont give up... i think i have... they have started to talk about i should go on pension i have to say that my father was in great shape & active! the epilepsy medication was the only thing he ever took in his life. he wasn't even on blood pressure medication. he used to bike alot, he went bowling 3 times a week. my mom & father went dancing every saturday night. Here some 80 year olds without seizure problems return their license for safety reasons and I can't say I'm against it (especially not after that 84 year old crashed my car in the parking lot while I was not even there ) What do you have to do to get your license back after being diagnosed with epilepsy? i know what you mean... some people reflexes at that age are totally gone. the doctors banned him from driving for 6 months, until they were 100% sure that the medication was the proper dosage and that his seizures under control. they then allowed him to drive again after he passed physical tests, reflexes & eye exam. but you know, after that, he kinda set bounderies for himself.. he didn't drive as far & not often at night. he didn't drive during snow storms. he kinda knew his limits. Link to comment Share on other sites More sharing options...
willywonka Posted April 23, 2010 Share Posted April 23, 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? I hate it too coz it makes Brangelina suffer... Hey, Teegs, your seizures aren't from epilepsy, are they????? It's more your heart and brain, isn't it? May i also say i hate cancer and Chron's disease and other **** that make people die??? Link to comment Share on other sites More sharing options...
Dark Angel Posted April 24, 2010 Share Posted April 24, 2010 I hate it too coz it makes Brangelina suffer... Hey, Teegs, your seizures aren't from epilepsy, are they????? It's more your heart and brain, isn't it? May i also say i hate cancer and Chron's disease and other **** that make people die??? Link to comment Share on other sites More sharing options...
nico_collard Posted April 25, 2010 Author Share Posted April 25, 2010 a lil blurry? maybe lay down a bit so it wont get worse? its possible to get cheaper meds. but im not allowed to get em now cos theres some xtra stuff in some of em that can make the meds. level in my blood go up and down and give me more seizures or feel very dizzy so i cant walk cos of too much creepy side effecs! double vision? thats not good when driving this is only some of the side effects i can have Lamotrigine: -Worsening of seizures (gives meds. against seizures that can give you seizures... i dont get it) -Depression -Anxiety -Suicidal thinking or behavior -Loss of concentration (ohhhhhhhh yeah) -Dizzyness (really... havent notised) -ADHD Keppra: -feeling of constant movement of self or surroundings and sensation of spinning (is Keppra a new name for extacy?) -unusual drowsiness or sleepiness -depression -loss of memory or problems with memory -mood or mental changes (tell me about it....) -nervousness (me nervous... never... ) -paranoia (ok that on makes me laugh) -sexual urge Yeah, my eyesight is slightly blurry... or maybe it's cause I'm short sighted I've also noticed that my balance is really bad, and sometimes I feel like I'm gonna fall over! And apparently all seizure meds have mood changes and depression listed as possible side effects... they haven't tested all meds to see if it affects people's moods, they just assume it does ... sexual urge ... Interesting side effect my father had what they called "noctunal epilepsy" it only happened twice when he was sleeping at night. he had to take meds and all was under control. he even managed to get his licensed back at 80 years old... so don't give up girls! That's weird. My grandmother used to have absence seizures and she ended up not being able to drive out of town... I don't have epilepsy or seizures, but I saw one on TV and it terrified me. It's very scary... I remember seeing someone have a seizure at work and I remember someone had one while I was on holidays with some of the Aussies last year... Here some 80 year olds without seizure problems return their license for safety reasons and I can't say I'm against it (especially not after that 84 year old crashed my car in the parking lot while I was not even there ) What do you have to do to get your license back after being diagnosed with epilepsy? I had to do the following to get my licence back: # Not drive/be clear of seizures for 3 months # Be cleared for driving by a doctor # Have a driving assessment with an occupational therapist The stupid RTA then made me pay for my licence again, because in their opinion I didn't physically hand over my licence when it was suspended (how I was supposed to do that when I was in hospital I have no idea). I paid for it, and they were supposed to send me a cheque because I still had 2 1/2 years left on my licence . People who lose their licence because they got caught speeding, drink driving or high on drugs don't have to do as much I'm sure, and apparently people having seizures cause only 0.8% of accidents here... but you know, after that, he kinda set bounderies for himself.. he didn't drive as far & not often at night. he didn't drive during snow storms. he kinda knew his limits. Knowing your limits is really important. If we drive to Sydney, I try and stop a few times cause I get really stiff and sore, and if I'm driving my arm gets sore. I hate it too coz it makes Brangelina suffer... Hey, Teegs, your seizures aren't from epilepsy, are they????? It's more your heart and brain, isn't it? May i also say i hate cancer and Chron's disease and other **** that make people die??? Nope, my seizures seem to be from the strokes I had. When you look at me I don't look disabled, but the damage to my brain is a problem... and my right arm is a little weaker than my left. That just reminds me, I'll have to harass that psychologist and tell him to send me the results from my assessment, seeing as he sent the results to my employer... 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 Link to comment Share on other sites More sharing options...
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