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#1
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what kind of sz!hi all not been on here in a long time so hi to all ok here goes this started summber 2006 it hapinds a lot when i wake up and start to feeling not right and feel a bit ill that something going to hapind cannot really expline ok what i no or sort of i woke up feel mins later i start to shake and i now this is happing sometime i go deaf i dont think when people talk to me i asnser back so it like my hold body cannot do anything all that goes on is shaking i been reading on the net as far so far i have been told at the hostpal i am having i have read the syons for Simple partial and it souds like that what is happing at time caz xx
__________________ I am visual impaired Retinopathy of Prematurity (ROP) Retinal detachment Dry eye Cataracts I have hydrocephalus ( Water on the brain) I have Moderate Learning Difficulties I all so have very bad migraines epilepsy had this sence 2005 Looking in to asperger (AS) |
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#2
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| Hi caz, it's nice to see you here again. Were the doctor's able to do any tests and make any determinations on your seizures?
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback |
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#3
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Re: what kind of sz!Originally Posted by cool1984 :
Hi Caz! Sounds to me that you are scared, and you are trying to talk to them and you can't hear them because you're having seizures (shaking), and you don't know what to do. Caz, what did the Doctor tell you what is going on? I know this can be a scary thing going on. (((((( hugs ))))))) Sharon
__________________ Sharon Advocate & Member of Head Storms - Resource Center " Vujà Dé - The feeling you've never been in here before!" |
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#4
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| hi Sharon thanks for your nice message! well i start having seizure in novmber 2005 and i did not told in till octber 2006 but we new all that time that there where seizure i was having! my first seizure i had was one day at college i was in halls and i did not feel well and i started in bed that day and about dinner time i woke up and start to shake could not stop this from happing "did not undedstared what had happind" and from that day on wards my arms hends legs would jark when i was in college and sometime it would make me really tiyed and i would end fall asleep lol" so on going i was having them in my sleep few time a few i would say 4-6 could of been more in may las year i start going deaf at time getting hot and sart having seizure where i new wha was happing to me and there where really shaing caz xx
__________________ I am visual impaired Retinopathy of Prematurity (ROP) Retinal detachment Dry eye Cataracts I have hydrocephalus ( Water on the brain) I have Moderate Learning Difficulties I all so have very bad migraines epilepsy had this sence 2005 Looking in to asperger (AS) |
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#5
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| Caz ... I am just wondering, are you deaf now? Or just deaf when you have seizures/shakings? I have 2 types of problems, nerve damage and epilepsy, my hearing was damaged by nerve damage at first, which caused me to be slightly hard of hearing (I could hear but just not at certain tones or pitches), then car accident in 1988 made me deaf overnight. So I am profoundly deaf since then with 110-120 dB range... so I'm D-E-A-F! I am wondering what College did you go or were you going to? Gallaudet University?
__________________ Sharon Advocate & Member of Head Storms - Resource Center " Vujà Dé - The feeling you've never been in here before!" |
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#6
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| hi i only go deaf at times when i have seizure caz
__________________ I am visual impaired Retinopathy of Prematurity (ROP) Retinal detachment Dry eye Cataracts I have hydrocephalus ( Water on the brain) I have Moderate Learning Difficulties I all so have very bad migraines epilepsy had this sence 2005 Looking in to asperger (AS) |
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#7
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| Originally Posted by cool1984 :
That's no fun .... Sounds like you have Reflex Seizures: This is only a partial listing and not a full listing - deafness / blindness is also part of the Reflex Seizures (I experience temporary blindness at times myself in the past) http://www.ilae-epilepsy.org/Visitor..._seizures.html
__________________ Sharon Advocate & Member of Head Storms - Resource Center " Vujà Dé - The feeling you've never been in here before!" |
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#8
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| can you expline this That's no fun .... Sounds like you have Reflex Seizures: This is only a partial listing and not a full listing - deafness / blindness is also part of the Reflex Seizures (I experience temporary blindness at times myself in the past) caz xx
__________________ I am visual impaired Retinopathy of Prematurity (ROP) Retinal detachment Dry eye Cataracts I have hydrocephalus ( Water on the brain) I have Moderate Learning Difficulties I all so have very bad migraines epilepsy had this sence 2005 Looking in to asperger (AS) |
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#9
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| Originally Posted by cool1984 :
is only a partial listing - it's an educational webpage that only provides "abstracts". Reflex Seizures - which impairs: vision, taste, hearing, touch, etc. That's only a partial listing - not a complete listing. Hope this makes it more clearer? I have Startle Epilepsy for example - that is a Reflex Seizure and it shows up on EEG - and it's related to touch. But this is very rare I ever get this when I am on anti-epileptic drug medication no matter what the dosage is, however, when I am NOT on anti-epileptic drug, I seem very prone to get this.
__________________ Sharon Advocate & Member of Head Storms - Resource Center " Vujà Dé - The feeling you've never been in here before!" |
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#10
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| yeah that clear i do no when i am not on my e meds i have more seizure and if i mix them up they make me feel a bit ill what meds are you on? caz xx
__________________ I am visual impaired Retinopathy of Prematurity (ROP) Retinal detachment Dry eye Cataracts I have hydrocephalus ( Water on the brain) I have Moderate Learning Difficulties I all so have very bad migraines epilepsy had this sence 2005 Looking in to asperger (AS) |
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#11
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| Originally Posted by cool1984 :
Currently On: Zonegran 500 mgs daily (200 AM / 300 PM) Klonopin 1.5 mgs daily (.5 TID / 3x's a day) Been seizure-free going on 3 months now ---------------------------------------- Meds I can take with no side effects: Mysoline & Dilantin Dilantin is currently the "spare tire in the trunk" because it has caused atrophy of my teeth (ruined my teeth) after long term usage - more than 15+ years *** Dilantin is the back-up reserve in event if all other anti-epileptic drug fails, because it works so well, even mono while at 80% success (better than nothing) this is something to 'fall back to' - I am trying to get off of this *** ----------------------------------------- Allergic to: Phenobarbital, Tegretol/Trileptal Bad Reaction: Keppra ----------------------------------------- anti-epileptic drug's that I can't take long term or side effects will start to develop: Depakote/Depakene, Felbatol, Lyrica
__________________ Sharon Advocate & Member of Head Storms - Resource Center " Vujà Dé - The feeling you've never been in here before!" |
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#12
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| The best Cocktail ever was when Dr. Ted Franco had was: (early 90s') Dilantin 200 mgs TID Mysoline 250 mgs BID Depakote 125 BID Phenobarbital 30 mgs TID with Klonopin at night with 2 mgs I was seizure free for almost 5 glorious years and strangely, it was also the same time my ex-husband also changed HMO that wouldn't cover my Neurologist, but he closed his office when his father died, and he quit being a Doctor. They just never could get me back on this meds again and I developed allergic reaction to Phenobarbital, and everything just went haywire and they just ended up leaving me with Dilantin alone. COUNT IT - that's 5 Anticonvulsants - 5 anti-epileptic drug's!
__________________ Sharon Advocate & Member of Head Storms - Resource Center " Vujà Dé - The feeling you've never been in here before!" |
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#13
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| hi at the momet i am on 1 med 2 in a morning 2 at night i'm on lamictal 25mg 4x i do feel i have had seizure last month or so becouse mean feeling not my slef what dont now what to do here any adive caz xx
__________________ I am visual impaired Retinopathy of Prematurity (ROP) Retinal detachment Dry eye Cataracts I have hydrocephalus ( Water on the brain) I have Moderate Learning Difficulties I all so have very bad migraines epilepsy had this sence 2005 Looking in to asperger (AS) |
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#14
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| Originally Posted by cool1984 :
Then talk to your Doctor and tell him/her how you are or have been feeling, write a journal or a log or a diary - even a notebook would do. I am just on 2 meds and they're both working great for me right now. Will keep you in my thoughts and prayers Caz! Hope you feel better soon!
__________________ Sharon Advocate & Member of Head Storms - Resource Center " Vujà Dé - The feeling you've never been in here before!" |
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#15
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| hi i been to the doctors i'm what ur a mistry lol i not been around to much today i am off to bed i dont feel well caz i expline more torrow
__________________ I am visual impaired Retinopathy of Prematurity (ROP) Retinal detachment Dry eye Cataracts I have hydrocephalus ( Water on the brain) I have Moderate Learning Difficulties I all so have very bad migraines epilepsy had this sence 2005 Looking in to asperger (AS) |
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#16
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| Hope you're feeling better soon Caz!
__________________ Sharon Advocate & Member of Head Storms - Resource Center " Vujà Dé - The feeling you've never been in here before!" |
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#17
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| what should i do? caz
__________________ I am visual impaired Retinopathy of Prematurity (ROP) Retinal detachment Dry eye Cataracts I have hydrocephalus ( Water on the brain) I have Moderate Learning Difficulties I all so have very bad migraines epilepsy had this sence 2005 Looking in to asperger (AS) |