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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Hi my name is Dan i am currently 21 but have had epilepsy since the age of nine due to a head injury i was crossing the street on my bike and was hit by a pickup truck by all accounts im lucky but i fractured my skull in 3 places and had a bleed in my brain among other things shortly after i got out of the hospital i started having grand mal seizures and they have proven it to be from the head injury the past few years ive also had many absent seizures where i just blank out those i dont even pick up on but family members did like i said a few years ago i have a vagul nerve stimulator which has helped a great deal and am on keppra zonegran and lorazepam for after my grand mals unfortuanetly i also have diastat which i refuse to even fill i would rather be at the hospital then be degraded like that at 21 yrs old for those who dont know what diastat is please dont ask. Ive never been able to relate to anyone hell ive never even met another epileptic I had no idea there was as many people with epilepsy as there are its also very hard for me at times to distinguish between whats normal for me and what would be normal for another epileptic because of my head injury. I have had severe tremors in my arms but mainly my hands for as long as i can remember my neuorologist says its from my medicine but this new doctor im seeing doesnt think so and im wondering if anyone else has a similar situation i can definetly live with the tremors i just want to make sure there really from my meds or a product of the epilepsy. Anyway I know that wasnt much of an intro but im kinda new at this whole talking about feelings thing but im hoping that this website can be a positive for me because im definetly in a rut.
 
Wanted to say hello Dan

Hi Dan. I'm new here too and am glad that you are opening up the discussion of the most important person in the world (YOU!). I tremble (rather shake uncontrollably with other disturbing symptoms) but i am not medicated right now for EP due to awaiting the big diagnosis still. I am 31 btw and its difficult to understand, especially when receiving medical treatment. I may not be the best advice giver because my EP symptoms are different, probably had EP since birth and my doctors have sucked ass. Sorry but they have. I hope yours are better and know that i get periods of hours where i do nothing but shake. A hot bath can calm my brain down enough--and so can a can of beer or two. Not my advice though with medication, but i am unmedicated. And yes, AED's can have some bad side effx too or not be at the correct levels. Keep your chin up, and keep writing on here kay man. Hugs from your new friend(s). :clap:
 
Hi Dan
My daughter is the one with the seizrue disorder.
When she was on meds, I had doctors telling me certain side effects were not from the meds. When in fact they were, because they were completely gone about a month after stopping that particular med. A journal is the only way to know whether or not there is a relationship. Kind of hard when you are on the med though.

My daughter is drug free, and is controlling her seizures through nutritional changes, supplements, and neurofeedback. You might consider NFB as it is known to help with tremours.

Magnesium is also useful for it, and for it's anti convulsive ability.
 
Hi Dan! Welcome to CWE. It's amazing how we think that we're alone until we meet others with the same condition. :) Then, to read the research and find that 1 in 100 Americans has epilepsy can be totally shocking. :) Just remember, you aren't alone. Feel free to vent in the padded room (we all need to at some point), read the lit in the library here, chime in, or just ask questions.
 
Welcome Dan. We all have a different story and different treatments but share epilepsy and a caring spirit in common.
 
hi i am cazzy first time to forum so not sure if doing this right..i live in uk london.both myself and daughter have epilepsey...i have big thing about word epileptic and pull people up instantly if i hear it said..i look forward to post and reading posts
 
Hi and welcome to CWE.

I had tremors due to meds. once when I was on Celexa (I think that is how to spell it) it's for depression, and when I was on Keppra.

Please make yourself at home, look into all the different forums the information I gotten here has been life changing for me.
 
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