I'd like to feature others seizure stories on this page. If you have a story that you would like to share and have posted up here, please send it to me on the "Ask a Question" page, and I will post it here. Thank you, and lets make this a place of help and healing for all.
Jeff's story:
I am 49 years old and had my first seizure in 2009. I have only ever had seizures at night whilst asleep. In 2008 I broke
my back in a skiing accident (compression fracture) but made what appeared to be a good recovery. 10 months later I had
my first Grand Mal. It was pretty severe and caused another major back injury. Two months later I had another (milder)
one and was put on 2,400mg Sodium Valplorate. I then had 2 years free of any full Grand Mal episodes, although I have had a few fairly mild episodes over the last 6
months. I frequently get jerking of the limbs for periods throughout the night. Whilst these rarely descend into full
seizures, when I do get a full seizure it is always preceded by this phase. The medical profession has frankly been of little help other than feeding my prescription, however careful documentation
by my wife and I has revealed a number of observations:
* I MUST take my evening dose of Sodium Valplorate between 20:00 and 21:00; any later and my risk of a 01:00am seizure increases significantly, earlier and I'll get one at 4:30.
* When I get sleep apnea my seizure control is significantly reduced. I have not been formally diagnosed with this condition (despite a sleep study) but addressing this condition improves my seizure control.
* My back is really out of balance. Pilates exercises to address this have really improved my seizure control. The link here was a surprise but is clear. Hope all of this is of interest to some.
Jeff, Australia
A note from Joe (the website owner): Jeff has graciously shared his story and told me that he is willing to answer any
questions that anyone might have, but asked that I not share his email. If you have a question for Jeff, please submit it
through the website, and I will see that it gets to him. And thank you Jeff for your bravery in sharing your story.
Hopefully this encourages others to share their stories as well, and helps in the healing process for all.
Cory's Story
It started when I was 15 on New Year's Eve around 2 pm. I find it
odd that I remember, but all I remember is standing up and collapsing
on the living room floor. I woke up to oxygen tubes up my nose and I
kept pulling them out. It was a 6 hour ER stay. They found nothing in
the MRI and CT scans. It wasn't a febrile seizure either. After that
they tried 6 different meds before they settled on Topamax. Still it
couldn't be controlled so I was sent to U of M. My new doc piggy backed
it with Lamictal. I was taking 1000 mg of Topamax daily with 200 mg
Lamictal daily. Eventually doc told me I was a good candidate for brain
surgery because I had two types of seizures (grand mal and complex
partial) and they were uncontrolled. The surgery failed and cost a
total of $250,000. I was lucky to have insurance...well it wasn't a
total failure I no longer have complex partial seizures. But I have
auras a lot that don't amount to anything which make me nervous. Also,
instead of seizing between 1 am - 7 am. I seize whenever my body decides to, but it's
never been in public fortunately.
IN THE SHOWER
The worst seizure was last March when I was taking a shower. Sorry if that's uncomfortable for everyone, but it's true. I remember seeing black spots floating in front of my eyes, but I figured it was me adjusting to the hot water and my blood pressure (I run very low). And before I knew what happened I woke up in a cold shower. So I know how long I've been out for. Over a half hour. I climb out with a migraine and throw up on the floor and I RARELY throw up. I was too weak to move after that so I just laid on the floor until my mom got home an hour later. I examined myself later that night. Worst injuries received. I had two baseball sized bruises on the back of my thighs. Numerous bumps on the back of my head, and a bruised upper lip, both sides of my tongue were bitten, including my cheeks, and my knees were bruised. I was lucky not to have broken my nose falling forward towards the faucet and the water knobs. Very lucky.
My doctors are confused as to why I have seizures. They list me as idiopathic, intractable epilepsy. I have no tumors, lesions, no history of drug abuse, not a diabetic, head injuries, and my seizures don't come on around my period. I don't think they like my case very much.
p.s. I hate when someone calls the ambulance. Nothing I hate more than waking up in one when it's not NECESSARY.
IN THE SHOWER
The worst seizure was last March when I was taking a shower. Sorry if that's uncomfortable for everyone, but it's true. I remember seeing black spots floating in front of my eyes, but I figured it was me adjusting to the hot water and my blood pressure (I run very low). And before I knew what happened I woke up in a cold shower. So I know how long I've been out for. Over a half hour. I climb out with a migraine and throw up on the floor and I RARELY throw up. I was too weak to move after that so I just laid on the floor until my mom got home an hour later. I examined myself later that night. Worst injuries received. I had two baseball sized bruises on the back of my thighs. Numerous bumps on the back of my head, and a bruised upper lip, both sides of my tongue were bitten, including my cheeks, and my knees were bruised. I was lucky not to have broken my nose falling forward towards the faucet and the water knobs. Very lucky.
My doctors are confused as to why I have seizures. They list me as idiopathic, intractable epilepsy. I have no tumors, lesions, no history of drug abuse, not a diabetic, head injuries, and my seizures don't come on around my period. I don't think they like my case very much.
p.s. I hate when someone calls the ambulance. Nothing I hate more than waking up in one when it's not NECESSARY.
