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epilepsy

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  • 02-06-2009 10:17pm
    #1
    Closed Accounts Posts: 35


    im just wanted to post this just on views on epilepsy, views and storys by anyone, help and awareness etc.

    Last weekend i was sitting in a pub with two of my mates having a few quiet drinks...
    of course there was a really loud group of hen party woman...
    God they can be sooo annoying... ud swear they never go out. have to be so loud and annoying:mad: They were from monaghen

    anyhow all of sudden we heard a loud bang on the floor...everyone turned around and a girl was shaking on the floor flat...
    She was having a fit....shaking and then all of a sudden started siting up and down again and again pretending

    a old man ran over to help but one of the hens shouted 'leave her,leave her'
    Then all of a sudden the girl got up starting laughing with all the hens and sat down drinking again.

    I have epilepsy myself and just thought what a bitch, its not funny.... no-one really understands what its like to have it.

    The old walked off and said to my friend who was watching, giving out and said how it wasnt funny, his sister died from epilepsy...

    My friend turned around and said got help that if a surtain someone we know was here, she would of went over a beat da **** out of the hen.
    Her mother also died from epilepsy...



    i just wanted to post this for viewers on your views
    storys, etc...


«1

Comments

  • Closed Accounts Posts: 13,429 ✭✭✭✭star-pants


    So the girl was faking having a fit ? If so that's really crappy.
    I have a friend who's father has very very bad epilepsy, he's had serious accidents from it.
    Another friend who's got chronic asthma and diabetes also got diagnosed with epilepsy last year.

    Even seeing it in an animal is a horrible sight, I would never imagine anyone would take the pi$$ with it. I guess it's like anything else, limping/being handicapped/etc, someone somewhere will make a joke.

    Were you looking for medical experiences?


  • Registered Users Posts: 300 ✭✭neoB


    My sister has epilepsy. Growing up she wasn't able to play the same games with us due to the flashing lights as well as having the police lights turned off when pulled over so she won't go into one. Not going from extreme weather, hot to cold etc. When she had hers though, she didn't have the wild ones, just mild ones. It was like she was dead. No one home, lights out... no response, comatose. It's the freakiest thing ever. She still has wee ones once in a while. But she can feel when they are coming, so at least that's going for her so she can sit beforehand. I don't wish that for anyone. The testing and going through meds to see what works. Shame on the one for doing that. People are so ignorant. Watching people come out of it is NO JOKE either.
    Saw a man was out on his motorcycle and he walked into his home, had a seizure and couldn't be revived from it. Dead. It can be a serious thing. :/


  • Closed Accounts Posts: 35 dianababyddori


    i always wanted to help others with epilepsy.
    anyone know any action groups,etc. for epilepsy people


  • Closed Accounts Posts: 13,429 ✭✭✭✭star-pants


    http://www.epilepsy.ie/ is the only one offhand


  • Closed Accounts Posts: 458 ✭✭ohanloj3


    I have epilepsy and I really would not have found that funny. Its hard enough to cope with without people taking the piss. I hate having it, It has ruined my life in so many ways- I,ve lost my independence over it, my social life is crap i.e. no nightclubs, no drinking, no concerts, I've lost friends over it. I don't need ignorant people reminding me of how crap it all is. I was just wondering if anyone with epilepsy feels the way I feel-hard done by, depressed, left out, isolated, like nobody understands??


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  • Registered Users Posts: 121 ✭✭KiLLeR CoUCh


    I was diagnosed with epilepsy a year ago now and it does rob you of your independance. I'd be furious if I ever saw anybody faking a seizure. I wouldn't wish a seizure on my worst enemy, how somebody could think they're funny is beyond me.


  • Registered Users Posts: 1,602 ✭✭✭emzolita


    i have epilpsy all my life (altho it was only diagnosed when i was 17, and sat my LC in hospital) cause i take complex-partial seizures, thats feckin rotten wat that girl was doing. i think i would have lost it with her, dunno how uu stayed cool.
    after trying every drug, and being allergic to most of them, i got two parts of my brain removed too, and tht failed, i was having up to 8 seizures a day. last June they tried me on my last medication i hadnt been on, a fairly new one Zonegran and i cant belive it, i havnt had a seizure since August. WOO!

    i wish u all the best and hope you all find something like this,
    xxx


  • Registered Users Posts: 6,341 ✭✭✭positron


    Absolutely rotten thing to do!

    People don't understand the social aspect of epilepsy. Just falling over and jerking is just the tip of the iceberg. What people don't realize is the confusion that follows, the tiredness, the sick feeling, being bullied at school, being isolated in social circles, the most awful feeling of not being able to normal things, lost job opportunities, discrimination at workplace, side effects of various medicines like drowsiness, forgetfulness, disorientation, vertigo, depression, weight loss, weight gain, hair loss, skin rashes... and then there is the threat of SUDEP - the list is really endless. Lets not even start what unpredictable seizure could get you into if you are out somewhere.

    My wife started having seizures when she was 10, and after 22 years of pure agony, only last year she had a successful brain surgery (with complications). She has been seizure free a whole year now and no one can believe the different it has made on her.

    PM me if anyone want to know more about the surgery and if you have any questions - more than happy to help!


  • Registered Users Posts: 166,026 ✭✭✭✭LegacyUser


    What a bitch.

    I'm a long-term poster and only recently got diagnosed with epilepsy. I've ended up in hospital once, after frightening the life out of my partner who (given we didn't know what it was at the time) thought I could have had brain damage. I've also had three complete blackout spells, lasting several hours which is quite frightening and dis-orientating.

    Socially, it's not affected me though. I've curbed my drinking since the diagnosis and ensured I get enough sleep and proper food (as everyone should, regardless) but I haven't found the need to drastically alter my life. Now I haven't informed work (I'm not legally obliged to) but I have let someone know there.

    Am I under-reacting? Or given I've a relatively mild case (in terms of number of attacks) am I just on the more fortunate end of things (as fortunate as you can be with a long-term illness)?


  • Registered Users Posts: 4 strummyash


    Jesus i dont know how you kept cool when you realised she was faking the seizure. Im 17 and was diagnosed with epilepsy a year ago, iv had around 200 seizures since then and they are not fun. People dont realise that the actual seizure is only a small part of it, its knowing you are completely out of control of your own body, the people staring, the restrictions, there the hard parts. Im blessed that lights dont effect me and iv been to two concerts this year with no problems but its still not fun.


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  • Registered Users Posts: 48 Giggles1982


    It was a pretty strange thing for the girl to do ? Sounds like she has serious issues to do crap like that.
    I have epilepsy myself , but i'm also a paramedic, and unfortunately have had a few call outs to fake seizures.

    Does anybody suffer from tremors/spasms ? I usually get them when tired etc, but ive had a near constant one for the past week & its driving me insane !:mad:


  • Registered Users Posts: 164 ✭✭pops


    I have had epilepsy for the last 22 years of my life and only recently found out the type of epilepsy I have was not what my medication was treating (long story). The type of epilepsy usually associated with jerks & tremors is Junior Myoclonic Epilepsy which is what I have. It is always worse when I'm tired and stressed.


  • Registered Users Posts: 48 Giggles1982


    Are many people still on Epilim chrono ? I think its a fairly old drug at this stage , I tend to bruise very easily from it too . I havent attended a consultant in a long time so ive had no LFTs done:o

    Any pregnant epileptics have experience of epilim during pregnancy ? My doc said I would have to come off it straight away ? Or change to a safer medication before I try pregnancy , but I really dont want to start messing around with medications when the Epilim has worked for 8 years...


  • Closed Accounts Posts: 10 Curley


    Are many people still on Epilim chrono ? I think its a fairly old drug at this stage , I tend to bruise very easily from it too . I havent attended a consultant in a long time so ive had no LFTs done:o

    Any pregnant epileptics have experience of epilim during pregnancy ? My doc said I would have to come off it straight away ? Or change to a safer medication before I try pregnancy , but I really dont want to start messing around with medications when the Epilim has worked for 8 years...

    Hi giggles,
    I used to be on Epilim chrono. Was taking 3000mg a day for about 18 months. I stopped taking this in May 2009. I no longer suffer from seizures though because I had brain surgery in May 2008. But I do know that if you were planning on becoming pregnant, then there is a chance you could develop polycystic ovaries. this is not well known by the way. I found out last october that I have polycystic ovaries and the doctor could not find the cause after doing a few tests. Then when I did a search on the internet on epilepsy and pcos, I found my answer. Sodium Valproate can cause pcos for some women but if you come off the drug, the condition sometimes reverses itself. But sometimes it doesnt either.
    I was not aware of this when I was taking epilim. I knew that one should not be on it during pregnany because it is one of the higher risk meds to be taking during pregnany to cause problems with the unborn baby. But to cause PCOS, I had no idea! :eek: and I am currently trying to get pregnant myself now but im taking fertility drugs now as a result and hopefully this will work for me. Otherwise I will have to look into alternative option such as IVF.

    So...if the drug is working for you and are not planning on getting pregnant just yet, then this is a decision for you to make on whether to continue taking it and your doctor and hopefully you wont develop pcos, or you could change your med. Either way, you should not be taking this drug during pregnancy anyway. There are alot of horror stories out there about women taking them years ago during pregnancy and then ending up with children having something wrong with them because years ago the doctors thought it was safe enough. But doctors have learned over the years that this is definitely not a good med to be on when pregnant.

    I wish you all the best and sorry for the negative input of the PCO thing but this is reality and women should be more aware, and made aware, if planning to have a family.
    you can pm me if you have any other questions.
    I suffered from seizures for 22 years and im blessed to be now cured. But I have been there, done that, gone through a number of medications, side effect etc, so if you want to chat about anything, please pm me.


  • Registered Users Posts: 48 Giggles1982


    Thank you Curley. The very best of luck in your quest for a child , I hope all goes well.
    Thats fantastic your seizure free & off meds . I'm not a candidate for surgery , MRI is normal, EEG is abnormal. In fairness I'm very well controlled ( touch wood !) , it was my 8 year anniversary last week :D I'm on epilim chrono 300mg twice a day. I'm not currently thinking about becoming pregnant, but I know I will have to change meds at some stage if I do want to start trying. I'm terrified of changing meds, I cant risk taking any seizures now, firstly I'd lose my job and secondly I'd go insane losing my driving licence and freedom !
    So I had been planning to stay on epilim for the forseeable future, but thank you for the pco information. Its good to know .
    My father died as result of a seizure , and I know of another girl also, she died 3 days after a medication change ...,. I know these are extreme cases, but I'm still wary & eager to keep my seizure-free status !


  • Closed Accounts Posts: 10 Curley


    Thank you Curley. The very best of luck in your quest for a child , I hope all goes well.
    Thats fantastic your seizure free & off meds . I'm not a candidate for surgery , MRI is normal, EEG is abnormal. In fairness I'm very well controlled ( touch wood !) , it was my 8 year anniversary last week :D I'm on epilim chrono 300mg twice a day. I'm not currently thinking about becoming pregnant, but I know I will have to change meds at some stage if I do want to start trying. I'm terrified of changing meds, I cant risk taking any seizures now, firstly I'd lose my job and secondly I'd go insane losing my driving licence and freedom !
    So I had been planning to stay on epilim for the forseeable future, but thank you for the pco information. Its good to know .
    My father died as result of a seizure , and I know of another girl also, she died 3 days after a medication change ...,. I know these are extreme cases, but I'm still wary & eager to keep my seizure-free status !

    Hi giggles,
    you're very welcome :-)
    300mg of epilim twice a day is fairly small dose and if it's helping you to control your seizures, and dont wish to change your med, that's okay. it's your body at the end of the day and how you feel about it. Your decision. noone elses. But if you ever in any doubt, please do talk to your neurologist.
    take care!


  • Registered Users Posts: 25 Molly22


    I have temporal lobe epilepsy..i dont have seizures where I jerk or anything, they are seizures where i stare into space, get intense deja vu and feel nauseous. This girl needs a dropkick to the head. just a pathetic loser who obviously did it for attention!
    im on lamictal at the moment, but im new to it so fingers crossed.


  • Registered Users Posts: 159 ✭✭thegoodgirl


    Hiya,
    Just came accross this thread.
    Unfortunately I have seen people doing this also. It is disgusting and I wish I was allowed to slap the people that do it.

    I had a bad experience last week with a friend of mine. I was dianogised with with epilepsy in November 2009 after years of messing around. The last seizure I had was in August 2009 and it happened in front of a friend of mine. She thought it was great as she is a drama queen and loved having to bring me to hospital and telling all my other friends exactly how it happened and how great she was during it.
    But last week she finally went a step too far. I went over to the UK to visit her for the weekend and to meet her new friends. As soon as I got there she informed me that is was alright she had warned her friends that I was a spastic (her word not mine). She claimed she did this so they wouldn't pressureise me into drinking. And as it turned out after she had had a few to many it was her whining at me that since I got diagnosed I am no longer any craic because I don't drink. I limit my drinks to 3-4 as I was advised.

    I was so annoyed and haven't talked to her since. I just hate how certain people act as if its all something to joke about.


  • Registered Users Posts: 16 alliejane


    Cannot believe that any one would fake a seizure, its is a shame that people are so dismissive of this horrible condition most think a few tablets will sort it out,if only! I have been having seizures most days for over a year now and am amazed at peoples reactions. I have partial seizures, which means I dont pass out but I dont have any control over what happens to me I spin/wander around uncontrolably and make a weird moaning sound and my head jerks, have to lie down if on my own to avoid hurting my self by banging in to stuff, they pass in a minute or two but as with many other posters they leave you wrecked and confused. I dont go out alone for fear of wandering on to roads etc. I can no longer drink and like last poster my old friends no longer invite me out I am guessing they find me very boring I guess dont want the bother of "minding me"as I am now dependant very dependant on others which leaves you feeling very down I am in my 30's. I can understand why you didnt say some thing as there is not much point as they must be a very ignorant uncaring bunch to tolerate some one in their company doing this in the first place


  • Registered Users Posts: 2,269 ✭✭✭cathy01


    My little angel has epilepsy.Im scared reading these posts.Shes seizure free for the past few months, that we know of.She was having constant seizure activity during the night and we never really know how many siezures themselves.They said , they where amazed she ever leant as she must have been so tired.She had one when she was a baby and I was told it was a breath holding incident.It wasnt, I knew that than but no one would listen.
    Shes on epilium, and feels sick after it.She has been on it for nearly 18 months and it was increased a few times due to her having more seizures.I asked about the PCOS but was told it would reveres itself.Shes 8.

    Shes making her holy communion this week and shes totally out of sorts, vomiting at night , tired and stressed out.Its the last day of practise today, I couldnt even send her to school yesterday as she was so tired from being up all night getting sick.I keep a close eye on her .She has complex partial seizures.She just appears to be sleep walking/talking.She doesnt remember anything, but its scarey when you find her down stairs during the night, or wandering around the house.

    I dont tell people, because , its non of their business, only if they need to know, like teachers, etc.Family are great about it, but I know some people look at me when I say , she cant stay up too late or get too excited, like Im being a mean mum.They will just have to GET OVER IT.
    Thanks for the thread, its good to share our experiances.
    Cathy


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  • Closed Accounts Posts: 1 Liverpool1234


    My partner of 9 years has epilepsy-compex partial seizures. He had his first one when he was 18, he is now 34 and would have one every 4 or 5 weeks or sometimes more-all at night time both out of sleep and during sleep. When he has one he has a blackout and collapses. His face and body completely freeze and he goes blue, he would look like he is choking to someone that didnt know what would be happening. He had his last one this weekend which resulted in a very serious fall after which he had to get 26 stitches and spend a night in hospital. I found him bascially in a pool of blood and thought he was dead initially to be honest so as you can imagine i was hysterical. This has been one of many falls and i am so freightened where this is going to end. Every time i hear a crash in the house i just know he has taken a blackout. Its awful that dread of where you are going to find them and what the injuries will be this time. I wouldnt wish this on anyone. In March he spent 11 nights in hospital in an epilepsy monitoring unit. Here his medication was gradually reduced to bring on seizures which were monitored via a brain monitor attached to his head and video recording. Final results of this have yet to be recieved but initial results show surgery not an option as seizures coming from more than one point on the brain. Doctors are hoping to better medicate now with the info they have taken from this testing. He is currently on 4*500mg Eipilm Chromo, 2*10mg Frizum, 2*400mg Tegertoral Retard and 2*100mg Zonegran. His seizure this weekend was his first since he came home from hospital after the testing. We live in hope that one day he will be seizure free through medication. I hope this is of help to someone. It is good to share stories just to know that you arent the only one going through this.


  • Registered Users Posts: 6,341 ✭✭✭positron


    Thank you Curley. The very best of luck in your quest for a child , I hope all goes well.

    Hey Giggles, Curly is also Mrs Positron, just as an update, Curly delivered a perfect little girl in January. Just a bit of positive news, hope it goes help everyone here suffering from the epilepsy related hardships. Like we kept telling ourselves, things can only get better. :)


  • Registered Users Posts: 17 Sevi


    Hi there,
    I'm 25 and have taken epilem for 5 years and seizure free woohoo!
    My partner and I would love children in a few years, anyone with experience of having kids etc?
    The thought of having another seizure terrifies me, especially whilst holding baby etc...


  • Registered Users Posts: 151 ✭✭radiat


    Hi, i just thought I'd throw my tuppence into the thread.

    I'm 33 and i have epilipsy since i was about 20. It was mild complex partial seizures at first and to be honest it didn't have much of an impact on my life. About once a month or so i'd just go of into my little dream world oblivious (oh! that's a fancy word!) to what was happening around me. Often I'd try to communicate with people but only jipperish would come out even tough i didn't know it. I'd then go of for a snooze for a few hours and i'd be grand again. No collapses or anything like that. I even drove at the time (yeah, i know). I had a few seizures while driving. I just pulled into the side of the road and waited until it passed (the seizure not the traffic). Totally surreal.

    We had our first child 7 years ago.I actually had a seizure in the delivery suite!!! But I came around again before the delivery. When the baby was born a staff member came around to give my wife a cup of tea, but when she saw me she gave it to me instead!!!! I'll never be forgiven.

    Then not too long after, I started having full tonic clonic seizures. I could feel these coming on so i never collapsed. Strangely, coming home from work set off the seizures. 9 times out of 10 the seizure would be within 1/2 an hour of coming home from work. It got pretty bad, i was getting seizures approx 3 days a week and usually multiple seizures in a day. Personally, for me, it wasn't as bad as it sounds. After all, i didn't collapse and it only happened at home. But my wife really suffered, she was then looking after 2 young babies and me having regular seizures. I started on frisium a year ago and I'm seizure free now.

    I had some scary incidents regarding the kids and seizures but as a parent, epileptic or not, kids can be hard work and dangerous situations comes with the territory.

    Is it a good idea to have kids if you've epilepsy? 100% yes. Feel free to ask questions.


  • Registered Users Posts: 612 ✭✭✭Rantan


    radiat wrote: »
    Hi, i just thought I'd throw my tuppence into the thread.

    I'm 33 and i have epilipsy since i was about 20. It was mild complex partial seizures at first and to be honest it didn't have much of an impact on my life. About once a month or so i'd just go of into my little dream world oblivious (oh! that's a fancy word!) to what was happening around me. Often I'd try to communicate with people but only jipperish would come out even tough i didn't know it. I'd then go of for a snooze for a few hours and i'd be grand again. No collapses or anything like that. I even drove at the time (yeah, i know). I had a few seizures while driving. I just pulled into the side of the road and waited until it passed (the seizure not the traffic). Totally surreal.

    We had our first child 7 years ago.I actually had a seizure in the delivery suite!!! But I came around again before the delivery. When the baby was born a staff member came around to give my wife a cup of tea, but when she saw me she gave it to me instead!!!! I'll never be forgiven.

    Then not too long after, I started having full tonic clonic seizures. I could feel these coming on so i never collapsed. Strangely, coming home from work set off the seizures. 9 times out of 10 the seizure would be within 1/2 an hour of coming home from work. It got pretty bad, i was getting seizures approx 3 days a week and usually multiple seizures in a day. Personally, for me, it wasn't as bad as it sounds. After all, i didn't collapse and it only happened at home. But my wife really suffered, she was then looking after 2 young babies and me having regular seizures. I started on frisium a year ago and I'm seizure free now.

    I had some scary incidents regarding the kids and seizures but as a parent, epileptic or not, kids can be hard work and dangerous situations comes with the territory.

    Is it a good idea to have kids if you've epilepsy? 100% yes. Feel free to ask questions.

    Good to hear the frisium is working for you - hope it keeps up.
    My missus has just started on frisium so am curious to know how its been for you - side affects etc? She's on Keppra and zongran at the moment, coming off the zonegran coz it was no benefit. She's had a rough time recently, a few trips to A&E, broken nose etc, full tonic clonic seizures with no aura or warning, seizure will hit any time any place recently, patterns have gone out the window, so we're putting a lot of hope in frisium!!


  • Registered Users Posts: 408 ✭✭pencilsharp


    Thank you Curley. The very best of luck in your quest for a child , I hope all goes well.
    Thats fantastic your seizure free & off meds . I'm not a candidate for surgery , MRI is normal, EEG is abnormal. In fairness I'm very well controlled ( touch wood !) , it was my 8 year anniversary last week :D I'm on epilim chrono 300mg twice a day. I'm not currently thinking about becoming pregnant, but I know I will have to change meds at some stage if I do want to start trying. I'm terrified of changing meds, I cant risk taking any seizures now, firstly I'd lose my job and secondly I'd go insane losing my driving licence and freedom !
    So I had been planning to stay on epilim for the forseeable future, but thank you for the pco information. Its good to know .
    My father died as result of a seizure , and I know of another girl also, she died 3 days after a medication change ...,. I know these are extreme cases, but I'm still wary & eager to keep my seizure-free status !

    Hi Giggles!

    I had my first witnessed seizure in 2005 when I was 22 years of age. I'm now 27 and seizure free since 2006 apart from the odd absence seizure which only lasts about 20-30seconds and doesn't affect me too much. We reckon I'd been having seizures for approximately 2-3 years before diagnosis when we relate it to various unexplainable things that happened over that time-mainly in my sleep i.e incontinence, tongue biting, falling from bed, unexplained bruises!

    I thought my world had ended when I was diagnosed and it took me along time to accept it but I have finally and I can see the positive side of it- I never suffered any serious injuries through seizure i.e car acident, major falls or anything like that. I think now other people have more of a problem with my epilepsy than I do. My best friend won't discuss it with me at all and if I have any little trips (completely unrelated to epilepsy) she panics thinking I've seized. My parents blame themselves for my epilepsy- I developed scar tissue from a forceps delivery which resulted in my epilepsy. Even though I'm 27 my parents constantly worry- am I taking my meds, have I drank too much, am I eating properly, am I getting enough sleep. Anyone else have this same problem? and have any advice on how to overcome it?

    Giggles,I was on epilim chrono 300mg twice a day and it was then increased to 500mg. Originally I wasn't under the care of the neurology team cos I was in a hospital with no neurology cover. When I went to see neurologist she took me off epilim because I was female of child bearing age, although had no plans to conceive. It can cause PCOS as previously mentioned, which can make it difficult to conceive, but can also result in club foot or cleft lip for the child. She changed me to lamictal 250mg (from epilim 600) but she reduced it slowly- reduced the epilim to 300mg morning, 600mg night for one month, then 300mg morning and night for one month and then 300mg morning only for another month until I eventually was brought completed off it and the lamictal was increased to 500mg twice a day. If you go see your consultant they will know the best way to do it, unfortunately it is different for everyone. Maybe have a look at this http://en.wikipedia.org/wiki/Valproic_acid


  • Registered Users Posts: 151 ✭✭radiat


    Rantan,
    No, i've had no side effects from frisium but i only take 5mg at night. To digress, I had a side effect with one drug in the past (don't recall which one) but it gave me double vision. But if i put my head down and looked up i was able to see ok. So for a while i was walking around as if i had reading glasses on! I don't know if i'm explaining that right.

    Do any of you have problems with memory? Mine's a complete mess. I don't know how much i remember of the last 10 years. I've no recollections of holidays we were on, children growing up etc. It can be very upsetting looking at your kids who you love so much and wondering what they were like as babies. It might seam a strange thing to say i don't know if i remember, but some things i have in my head are a result of chinese whispers passed on over time, or images from photos videos etc, or what people have told me. For example i thought i had this memory of my wedding day but then i released the memory was of me walking, as in, i saw myself walking. Have you memory problems?

    Another thing, do any of you have problems doing exercise? I'm on 800mg Epilium twice a day, 400mg Tegretol twice a day and 5mg of Frisium at night. If i do too much exercise i get extremely weak. The weakness only sets in about 2 hours after doing the excercise. I could go our for a cycle for 3 hours no problems and when i get home i'd be perfectly fine but after a few hours i get very weak. But the weakness tends to be time related as opposed to energy related. For example i could go for a 70min run (which is much harder than 3 hours on a bike) and have no problems. I love to cycle, run etc but i'm limited in what i can do because of the weakness. It feels like i've a really bad dose of the flu and i can struggle to stay awake. Do you have anything similar?


  • Registered Users Posts: 408 ✭✭pencilsharp


    radiat wrote: »
    Rantan,
    No, i've had no side effects from frisium but i only take 5mg at night. To digress, I had a side effect with one drug in the past (don't recall which one) but it gave me double vision. But if i put my head down and looked up i was able to see ok. So for a while i was walking around as if i had reading glasses on! I don't know if i'm explaining that right.

    Do any of you have problems with memory? Mine's a complete mess. I don't know how much i remember of the last 10 years. I've no recollections of holidays we were on, children growing up etc. It can be very upsetting looking at your kids who you love so much and wondering what they were like as babies. It might seam a strange thing to say i don't know if i remember, but some things i have in my head are a result of chinese whispers passed on over time, or images from photos videos etc, or what people have told me. For example i thought i had this memory of my wedding day but then i released the memory was of me walking, as in, i saw myself walking. Have you memory problems?

    Another thing, do any of you have problems doing exercise? I'm on 800mg Epilium twice a day, 400mg Tegretol twice a day and 5mg of Frisium at night. If i do too much exercise i get extremely weak. The weakness only sets in about 2 hours after doing the excercise. I could go our for a cycle for 3 hours no problems and when i get home i'd be perfectly fine but after a few hours i get very weak. But the weakness tends to be time related as opposed to energy related. For example i could go for a 70min run (which is much harder than 3 hours on a bike) and have no problems. I love to cycle, run etc but i'm limited in what i can do because of the weakness. It feels like i've a really bad dose of the flu and i can struggle to stay awake. Do you have anything similar?

    Radiat I have problems with my memory but not to the extent of yours and its not long-term memory. I have problems with my short time memory, I could be in the middle of a conversation and then BANG- a complete blank hits me, I feel like such a fool when this happens! Also, sometimes I find it really hard to get words out, like I know I want to say 'apple' for example and I can visualise it perfectly and I use my fingers to display actions of it (like a complete eejit) but still the word doesn't come out!

    I only had an experience with frisium for a very short time (think I was on 10mg) and it definitely zapped my energy and motivation!


  • Registered Users Posts: 151 ✭✭radiat


    that's funny pencilsharp i don't have a problem with short term memory at all

    You mentioned not being able to say words. I did the wada test about 18 months ago. I don't know if you're familiar with it but for the test half of you brain is anesthetized,the aim being to see how well you can function with a part of your brain removed (i was being considered for surgery). Not a mickey mouse procedure. Look it up for more info. But one of the effects of the procedure is to stop your ability to speak. It's completely surreal, you know what you want to say but you don't know how to talk. Nothing comes out at all, you can't even say em, ah, oh, can't whisper, anything! But i believe you are able to sing because singing is controlled by a different part of the brain. I wish i had tried.


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  • Closed Accounts Posts: 311 ✭✭Printemps93


    She was having a fit....shaking and then all of a sudden started siting up and down again and again pretending

    I have epilepsy myself and just thought what a bitch, its not funny.... no-one really understands what its like to have it.
    ..

    Never had it myself but have cousins that did before surgery anyway

    its not funny seeing someone having a fit when my babysitter used to have them I was a child and had to call for an ambulance , I was terrified so for that hen faking .I'd probably have slapped the c*** .


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