Added: 5 years ago
From: ginnyisdacoolest
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  • hey good lil vid, im worried my mind will turn to slush on epilim, had seizures since age 9 and im only on 900mg a day which isnt so bad, but i can say u can do alot to counteract the side effects, your clearly a smart and articulate girl, keep that mind sharp, follow your dreams, keep healthy and focused. you will be fine, there are diets than can help too. epilepsy used to be called the diviners disease! and some of the greatest minds our species offered up were epileptics, peace and love

  • Like all your stories..., i had EPILEPSY for about 20years, i'm in my early 40's now and i've been only on DILANTIN ever since and i do gotta agree... really takes your Memory away...I used to remember things long ago (before Medication) and now i can't even remember things i did about a month ago...or less?. but mostly lately..i'm getting "Partial Seizure's". can anyone, besides my "Doc" recomend any thing else?.has any one heard of "TEGRETAL"?/ and i live in; CANADA, thanks so much...

  • I'm on epilim and have been since I was five ( I'm now fifteen ) every year they put my dosage up because something always goes wrong like me having absent seizures or something but I was diagnosed when my parents split up and started taking the most awful grand mals, but not that often. The last time I took a full blown seizure was two years ago but you certainly pay a price being on a drug like epilim. I have put on over 4 stone in the past year or so and my dosage is 900mg morning and night.

  • In the US you have to be seizure free for a year (tonic clonic) and six months for partial, at least in NYS

  • I used to get Epilim for petitmal between 13-17. It did a rather wonderful job of taking me from an A-grade pupil to a spazzed out zomboid that flunked pretty much everything & couldn't think their way out of a brown paper bag. I was rather hoping that they'd have banned it, the withdrawal was long & horrible....

  • I take Klonopin, Valium if needed, Lamictal, Keppra, and other stuff.

  • I've heard that people with epilepsy have low levels of magnesium in their system and magnesium balances the electrical activity in the brain. I was diagnosed with epilepsy in 2000 and I'm trying to eat a healthy diet and avoiding junk food. Find foods that are rich in magnesium like nuts, bananas, beans, dried figs, artichokes, fish and don't forget to take B vitamins and eat essential fatty acids foods which contain Omega 3,6,9 DHA.

  • You should ask about Trileptal instead of Epilim. I was on Epilim for years still having a grand mal every few months. Trileptal has been my saviour and at your age you should be on something like that (it's alot less toxic then either epilim or tegretol)

  • Thanks so much for your video, My father has just been diagnosed as a mild epileptic and I was a bit nervous about it. .. I feel a little better knowing that it helped you.

  • I stay awake until I'm absolutely exhausted. I didn't start driving until 25 (I'm 28 now).

  • Thank you for posting this.

  • i've very recently got diagnosed with epilepsy just over a week ago.

    but been saving seizures for about 7 months. but just auras and upper body and head jerks lasting a few mins whilst im semi conscious.

    now on 1600mg epilim, used to be on 800mg but wasn't working and was getting them almost everyday.

    no one alse in my family has epilepsy, so all i can think is my past drug use may have caused it. as i did have an accidental OD in 2006 but the seizures started 2 years later...

  • The psychiatrist who gave you sodium valpurate should have been shot - definitely try and ask maybe even beg your parents to suggest carbamazapine retard! I would if I was you! psychiatrist are evil! lol :P

  • i dont think you see a psychiatrist when you suffer from epilepsy. you see a NEUROLOGIST.

    clinical papers show carbamazapine has higher weight gain than valporate and valporate is slightly more effective in children

  • I suffer from bipolar disorder also, so I see both!

    carbamazapine does not have higher weight gain than sodium valpurate, I wouldnt say it has any!

    Im not sure which 'clinical papers' you reading that from also how effective it is depends on the person, Im not sure what you mean by saying its slightly more effective in children, its not! :P

    but do what you want!

  • AHHH! hey little girl - Im epileptic too - ask for Carbamazepine retard, its much better and you wont gain weight although you will feel sluggish at first. Im biplar too and I was given sodium valpurate along side carbamazapine instead of lithium as a mood stabilizer and gained like 2 stone! :( you might not worry about your weight now but you will when your older!)

    also beware that your petimal may well develop into grandmal - as mine did when i was like 16 (don't go swimming!) nice vid! :D

  • people dont understand, my daughters condition is so misunderstood. I wish you luck! bridget porch

  • As far as the driving situation, I don't think you should be too concerned. There are other ways of getting around and like Sinusoidalism said, driving is very much overrated. Thanks for sharing you're experience (: x

  • I started off on a drug called Novaline and then progressed onto something called Tegretol, I share the same symptom of extreme tiredness but I've never experienced nose bleed's as a side effect, that's quite extreme. I do the same staring into space routine, I also bang my head allot while in bed and I have allot of strange limb reflexes.

  • I take your same drug, little girl, in Italy Epilim is called Depakin.. about 800 now, but before 1200 and before also 1500 ... well, if you want, I'm here, drugged as you will be about 18 years in the future. Bye

  • Hi little girl. I'm from Italy and I'm an old man ...38 now... taken drugs from 19 years old.. well, I'm still alive. Good luck, bye

  • i am now taking epilim x 800mg twice a day and also another med i forgot the name:'( and i want baby for so long ....i am 26 now married with so much pressure in life and lost my job coz i have so much sezure:'( about 15 in one day its really hurts.....i just wish i can be alittle normal one day and go out by my self instead my bro or friend being with me.....but i just wanna thank the ppl who helped me in life...thank u

  • good luck with it all. Stay strong babe :)

  • I take Lamictal. I used to take Dilantin and Phenobarbitol.

  • i just had my first grand mal last month since then ive had partial onset seizurees that last all day and was put on zonegran which did not work now im on keppra and i hope to God this medicine works but i agree with everyone else you have to keep strong because dealing with this is the hardest thing i have ever had to do in my life.

  • i am taken this med too i hate it but what can i do..been taking it over 10 years:'(

    i am really tired ....i wish it go away...i take 100mg twice a day...EVERYTHING U SAY IS TRUE

  • ive got to take 700mg x3 a day, and i', pretty fucked all the time like. people just don't understand

  • Don't worry and stay strong dear, I'm also on epilim, 800 mg, and I know how drowsy it can get. Poor girl you're so young too. I must be double your age...

    BUT, one thing I can tell you is that, driving is so much overrated. =) You won't be missing out!

  • ^Get bent...

    Keep grooving ginny. :^)

  • Yeah you would do that, wouldn't you, because you don't have the strength of character that having epilepsy gives you. This girl, as I am, is infinitely stronger emotionally than you will ever be. We have gone through things that you cannot even dream of. If this video makes you say such a horrible thing to her, I'd like to see you try being a person with epilepsy.

  • It's about time society recognizes the agony and devastating effects of Epilepsy as much as it recognizes stroke, cancer, diabetes, etc. After all, adversity is just adversity, one way or the other. Let's raise our voice and root for ourselves as much as rooting for others who can NOT stand for themselves. IT'S ABOUT TIME TO STAND UP & CHALLENGE THE CROOKED SYSTEM.

  • I have epilepsy. God Bless you I no it can be hard to deal with it

  • wow, youre such a tool genuineflavor

    you have no class whatsoever

  • I have epilepsy and i started on my medication a month ago i have the same sort of epilepsy as you but i had from 3-7 a day and i have only had 6 petit mals since i started on the medication, so thank god for that (: I wish you all the best in the future. Thank you for telling your story (L'

    lots of hugs - Julie (:

  • I take dilantin- and usally this drug shouldn't be given to females that are young enough to give birth. But my tubes are tied. So thats why I'm taking it. I have some serious side effects. One is excess facial hair. Yep..I shave. over my lip and under my chin. I also pluck and wax. I hate this side effect. But it does stop my seizures.

  • Good luck with your medication but after 10 years of medications, I don't trust the prescriptions drugs any more, therefore, I'm hoping and praying for brain surgery.

    Wishing you all the best.

  • well there are various effects dilantin has, I was on dilantin since I was 10 and was on it for 9 years. My gums swelled up something fierce while I was on it, or was it the Phoenabarbital?(hope I spelled that right)

  • I have been on dilantin for 15 years and 4 months ago my right breast kinda enlarge a little. Next month they are switching me to levetiracetam because they think my dilantin is the reason why my right breast is enlarging. Does that make sense? I dont know there must be something like I must have not exercising and getting fat since my last year bicycle accident.

  • liquid epilem tastes really nasty i had to take it wen i was 9 >:(

  • Afraid of losing my job, my car, my driving licensde, my home and my friends, I ignored my seizures and my wife's constant nagging to seek medical help for over 5 years but seziures continued striking. Finally, I lost everything except sezizures. Therefore, You better take your Epilepsy seriously now before it's too.

    Go see many different neurologists.

    Good luck!

  • yep i have them 2 lol :P but i have only just started taking them

  • I hope talking about things gives you some solice in what has been dealt to you in life.I have tonic-clonic & petit mals. My seizures happen at specific times for specific reasons, so I'm able to drive. Was on Dilantin for 20+ years; now on 3kmg of Keppra, 600mg of Lamictical, & 2mg of Klonopin. God bless you all.

  • You are very cute! *blush*

    ^x^

  • I am on 3000mg of Keppra, 300mg of Dilantin & 2 mg of Klonopin.

    My childresn take Topamax & Keppra.

    We have some vid's you may like to watch.

    Hugs

  • A person close to me has epilepsy and over the past 20 years has been on so many different medicines we have lost count. Glad that your medicine controls your seizures pretty well so you can get on with other things in your life. Best wishes.

  • Trileptal worked on me

  • To everyone who's asked what hospital I attend -

    its the National, London.

    If you're British, ask your GP to refer you to:

    The Institue of Neurology

    National Hospital for Neurology & Neurosurgery

    London

    NHS rating = 5A*

    Takes 1,000 new referrals a month

  • I have Grand Mal Epilepsy. I have been seizure free for 25 years.

    For 70% of epileptics they find the right medication. I have a driving licence - and passed my test 1st time. Go for it!

  • i have read that most epileptic seizures are caused by worms....if youd like more information, please get back to me.....

  • Different societs teach different values about different things in societies. Look at all babies all over the world, they know nothing until they are brought up in certain way, thought to believe in society's right & wrong cultures, values & misconceptions. Sick society raises sick children, etc.

  • ok, listen, i have epilepsy and i just cant stand it how people just ramble on about it. i do not feel sorry for you, and hopefully no one else does.

  • i dont have epilepsy but yet, i used to have severe spasms in my hands and rocking, most of it is under control w/o meds. idk why ppl are taking it maybe cuz im one of those who dont have epiliptic seizures. idk why, can someone explain this to me. thanks.

  • i take medication tho just for my aspergers.

  • you are wrong about the driving thing. it's one year and not five, if you live in the UK that is.

  • Yeah, but I think there's this big thing about working down the meds slowly so my body doesn't get a shock when I come off.

    Or something like that.

  • this is true, i dont know your own situation so i can't comment then. perhaps they want you on it for a few years then want to try to take you off it. you can grow out of it. i hope you do. please take it seriously though unlike i did, i woke up one day aged 30 and realised id ignored it for 15 years.

  • when you turn 20, drive the hell out of your parents car. Every parent should lose 1 vehicle per child, don't let them think they will be the exceptions to this rule of the universe!

  • i started to have Depakine valproate sodium two days ago.

  • ok, all meds I took or take(or those I remember):

    Tegretol, Lamictal, Phenytoin, Phenobarb, Topamax, Mysoline, Valproats(family meds), Zonegran, Keppra, Frisium...

    Now, I just take one sort of Valproats, Zonegran, Keppra, Topamax and Lamictal

    The Zonegran is to be put up and the Topamax to be put down.*sigh*

  • Just thought I'd comment and say I'm on the same medication as you, the box looks the same and everything!

    I take 2 a for tonic clonic and petit mals.

    as for the driving, I had to wait 2 years seizure free before I could get my learners, I finally got it, had them for 6 months and then had 2 tonic clonics in 24 hours. so I sort of know your pain.

    thank you for the video, its sort of comforting to know other people talk about it and stuff :)

  • Hey im 39 , I know what you are going thru, I have epilepsy, been on limotrigen. I am on Felbatol, lamactal , phenobarb....I have gran mal , Im 39 yrs old..Its cool that you are sharing these facts with others...ive gained weight, lost weight, used to have seizures 3 or 4 times a week as kid your age, now its maybe like once or twice a month. Keep on keepin on, and not driving isnt so bad , take care kiddo

  • very informative! thank you!

  • I also have to take seizure medications. I know them mostly by their older nemes. I have gran mal (more newly called clonic tonic), petit mal (I think the new name for them is ;absense seizures') and partial complex seizures. I had to stay away from the internet for a while during a med adjustment very recently until its been more sorted out.

  • I took lamictal (lomotragene) a few years ago when I was having absont seizures but then I began to have really bad effects and began to have grandmal seizures. Now I'm taking zonogram, I'm 18, and I've never been able to drive but I know I'll find my way and so will you. Thanks for showing this video.

  • Ginny, let me guess, your on a PC and using a PC webcam? If you ever get the opportunity, switch to a MAC! MAC makes a webcam called iSight which works well, like all Mac products.

  • Thanks, yeah, I am on a PC. I dunno if I have the nerve to ask my dad to just buy a MAC just like that, but if we ever have to get rid of the PC we have now, I'll keep that in mind.

  • I'm taking valproate family medications as well. The brand name seems to make a difference sometimes. Yes, it makes me "less active" and so weight gain is problematic unless I try to dose it in the night before a nervous kind of day.

  • What are you taking it for?

  • aww, thanks.

  • Ginny, one more thing i want to say, I dont look at my epilepsy as a curse or something ...Its lifes hurdles, get over it and move on is my motto, I also use my epilepsy as a source of humor...

  • such an incredible video from an incredible person. thank you for sharing and please keep the videos coming. thank you. phil

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