Epilepsy

Living with Epilepsy: The Aftermath (Part 2)

by Reema on December 6, 2006

in Epilepsy

Everyone was in a state of shock after my first seizure, i stayed in the hospital for 3 days doing lots of tests. Family members visited with their flowers and chocolate. At the age of 10 i didn’t understand what happened to me so i asked my parents and all they said was i had a very bad nightmare and that i injured myself by falling out of my bed. It was easy to believe this lie as a young child it was safer for me to live it than knowing the truth. But in reality deep down i knew it wasn’t so, you see at that night everything changed and to this day i ask myself was that change for the better or worse? I’m not sure what’s the answer then again if i put myself in my parent’s shoes would i have done the same? maybe or maybe not….

When i went back home my parents became over protective of me. I wasn’t allowed to go and see my friends right away, mom insisted i stay at home and rest for a couple of days. Something was different and i wasn’t sure what it was so i just ignored it. The only fun part i enjoyed tremendously was whatever i asked for like toys, more ice cream and so on my parents never denied me I felt like a sorceress casting magical spells on them do to as i command. Poor me for not knowing they did this out of pity. The only thing that my parents wouldn’t allow was to sleep over at my friend’s house i was very upset.

A week later after being released from the hospital i invited my friends over (since we all live in the same neighborhood we visited each other in a regular basis) after dinner i remember we played hide and seek and joked around. Just before they left we promised to get together the next day after finishing our homework but sadly i was the only one that didn’t keep her promise because that night i had yet another seizure. This time when i regained consciousness at the hospital i looked straight at my mother’s eyes and asked her the question she never wanted to hear “what’s wrong with me?” she didn’t answer she just looked away. I knew something was wrong something that i couldn’t understand, something that caused me pain. That something not only changed my life but changed the people around me.

A few days later my family and I were heading towards Germany my dad said we needed a “vacation” little that i knew there were two German doctors waiting for me eagerly to bombard me with their medical tests and scans.


End of Part Two.

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I’ve mentioned and define Epilepsy before in my blog, sadly where i come from people are not aware or in other words lack the knowledge about it. Anyway I’ve decided to write a series of posts from time to time about living with Epilepsy how i dealt with it, how it changed my life and so on.

I still remember my first epileptic seizure, how could i forget the night that changed my entire life. I remember at the age 10 one beautiful Thursday night my friends from the neighborhood came over to play and we were a loud bunch. Our laughter filled the night’s sky, i remember being very happy as we laid on the wet grass of our small garden looking up at the stars and singing. In fact i made up this stupid song about the north star and my friends joined in, yeah we had loads of fun but it never lasted long.

When it was bedtime i got ready for bed and went to sleep what happened next. I vaguely remember, it’s a weird feeling I’ll try my best to describe it. It’s like watching short video clips that instantly show up then it’s dark again. I only felt or remembered those short moments where I’m actually conscious for mere seconds, i remember hearing my screams, remember biting my mom’s hand (she always placed her hand in my mouth so i won’t bite my tongue even though i kept telling her numerously not to. I guess that’s what being a mother means). My seizure would last for 1-3 minutes which felt like a life time for me then so very slowly i start my journey back to reality. My first memory of being conscious was in the back seat of the car, my mom holding me in her arms and kept rocking back and forth repeatedly saying in a quivering hysterical scared voice “Do you know who I am? I’m your mother Reema look at me sweetheart do you know me?” My face was wet a mixture of my sweat and mom’s tears, i tried to answer her but i only heard myself moaning. My tongue was heavy i couldn’t speak i was very disoriented and my body felt like lead i couldn’t move i was in pain and I blanked out a few times.

Later on i heard a man’s voice i wasn’t aware of my surroundings i tired to go back to sleep but the man was persistent he kept saying “wake up Reema wake up, do you know where you are?” slowly i opened my eyes. I didn’t know where i was it took me a few minutes until i realized i was in the hospital. The doctor asked me again and i nodded. My mom who tried her best to hide her pain and fear stood next to the bed smiling and brushing my hair away from my face soothing me with prayers and words of love. Dad stood looking at me he also wore a mask to hide his true emotions, a few years later mom told me when i had my first seizure that night my dad fell on the floor and cried. I fell asleep again and after a few hours i woke up with a splitting headache my body and muscles were very sore just lifting my hand hurt like hell, mom was there and i found out that during my seizure i lost control of my bladder hence the change of clothes.

End of Part One.

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Epilepsy Misunderstood

by Reema on September 22, 2005

in Epilepsy

I took it upon myself to explain what is epilepsy and what type i have since a lot of people seem to think that epileptics are “retards” or “stupid”, I’m sick and tired of hearing this B.S especially from some of my ignorant countrymen. I remember when i was in Kuwait i had to endure the stupid comments and stares in fact my life was very isolated because i was surrounded by idiots. I want to make something clear EPILEPSY is NOT a deadly disease like some might think, nor am i stupid or possessed by the devil (i am NOT like EMILY ROSE- yeah some people actually thought that!!) and just FYI i do have a science degree therefore my mental abilities are unaffected.

Some Famous People with Epilepsy:

1. Alexander the Great.
2. Julius Caesar.
3. Napoleon Bonaparte.
4. Leonardo Da Vinci.
5. Socrates
6. Hercules.
7. Joan of Arc.
8. Gustave Flaubert, writer.
9. Charles Dickens, writer.
10. Fyodor Dostoyevsky, writer.
11. Vincent van Gogh, Artist.

Definition: Epilepsy is a neurological DISORDER resulting from temporary brain dysfunction which produces convulsive or non convulsive seizures.

What are Seizures?:

Uncontrolled reactions that occur when a group of nerve cells in the brain become unusually excited and emit a burst of electrical activity.
OR
A sudden alteration of behavior due to a temporary change in the electrical functioning of the brain, in particular the outside rim of the brain called the cortex.
There are many types of seizures but i will only explain what i have, for more information about the other types click here.

I had this disorder since i was at the age of ten, i have what is called Nocturnal Epilepsy, seizures that happen ONLY during sleep. My seizures are called generalized Tonic-Clonic(Grand Mal) Seizures:

The first stage of a grand mal seizure is called the tonic phase, in which the muscles suddenly contract, causing the patient to fall and lie stiffly for about 10 to 30 seconds. Some people experience a premonition or aura before a grand mal seizure; most, however, lose consciousness without warning. If the throat or larynx is affected, there may be a high-pitched musical sound (stridor) when the patient inhales. Spasms occur for about 30 seconds to a minute, then the seizure enters the second phase, called the clonic phase. The muscles begin to alternate between relaxation and rigidity. After this phase, the patient may lose bowel or urinary control. The seizure usually lasts a total of two to three minutes, after which the patient remains unconscious for a while and then awakens to confusion and extreme fatigue. A severe throbbing headache similar to migraine may also follow the tonic-clonic phases.

Information was taken from Health and Age website.

I’ve been taking medication and thank god my seizures are quite controlled, over 80% of people with epilepsy can control their seizures with today’s medicines. The last seizure i had was last April because my body went through stress and trauma after my miscarriage and D&C procedure.

As an epileptic person i live my life like every normal person does with some exceptions of course but i learned how to cope with it, people back home seem to think i shouldn’t talk about it or hide the fact that i have this disorder, why? it’s important to educate people because i feel Epilepsy is so misunderstood. Guide to Understanding and Living with Epilepsy is one of my favorite books and i highly recommend it for those who have this disorder or their loved ones, my husband enjoyed reading it.

Thank you for taking the time to read this 🙂 I end my post with a quote i found,

“With knowledge and the right treatment plan, people with epilepsy can look forward to full, independent lives.”

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The Exorcism of Emily Rose

by Reema on September 10, 2005

in Epilepsy, Movies & Shows

So my DH convinced me to see The Exorcism of Emily Rose and it was one scary movie especially when it’s based on a true story! Basically it was about this 19 year old devoted catholic girl who got possessed by demons, I’m not going to go into details so i wouldn’t spoil it for folks who want to see it. Jennifer Carpenter who played Emily did an awesome job, her expressions and acting were so real and haunting i could see that this particular role demanded a lot, well done.

Now the freaky thing it got me thinking about the demon world i know they exists and all religious scriptures mentioned such evil forces and the spiritual realm, do i have the courage to venture in to such things? HELL NO! over the past years I’ve met people who were into that sort of thing the stories they told me would turn ones hair white. I asked myself what makes some people so obsessed in the realm of spirits and demons? maybe because it’s human nature to discover the unknown? or maybe in the process of searching for the truth one wants to believe they simply don’t exist, and if they don’t then there’s no reason to fear? i don’t know….

*********MINI SPOILER*********

The movie introduced an interesting dilemma, like me Emily was epileptic and the main debate was Emily’s death due to her disorder or the demons that possessed her? The conflict between science and religion confuses people and when there is no hope in science then religion takes over and vise versa. According to Islamic scriptures epileptics are people who were touched by demons does that mean I’m possessed? hmmmm i don’t feel my head rotating and my voice still sounds childish….i don’t think I’m possessed but i do believe in demons in fact we see evil in it’s many forms everyday spiritual or not it does exist.

Rating: ★★★★☆

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Hospital Finale

by Reema on July 31, 2005

in Epilepsy

Woke up early morning today, i felt excited and extremely happy because today was my last day in the hospital YAAAY. My DH came and we waited for the doctor to brief us with the test results and suggestions that I’m not going to talk about in details because it’s boring and depressing. FINALLY I SAW THE SUN, as soon as i went back home i did my own ritual dance (which i invented at the spot) hugged dad, then my cat, took a long warm shower and now I’m having a nice cold soda drink as i type this entry. WOW 88 emails on my yahoo account and 20 on msn!! it’ll take me forever to read and reply but i don’t mind at all, i have a lot of catching up to do, blogs to read and comments…..indeed home sweet home 🙂
p.s. i didn’t have my seizure and I’m willing to bet i might have it tonight here at home, that’ll piss off the doctor since he was soo eager to see it, LOL

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Hospital – DAY 6

by Reema on July 30, 2005

in Epilepsy

Ginny pig

3 men and a woman entered my room, the mad scientist wearing his dark brown suit followed by his 2 apprentices in a white coat, and the nurse with her ever lasting smile wearing her flowery uniform. My father was forced to leave and wait outside, I was scared my heart beats faster as I watched them surround me, I knew it would come to this, they wanted to force my seizure out,
“Now Reema I’m just going to injected you with this (showing his liquid filled syringe) I want you to close your eyes, open your mouth slightly and breathe in and out, try to relax and if you feel a seizure coming just raise your right hand” said the mad scientist

I nodded and just before I closed my eyes I looked at each of their faces, oh the look they had, all wanted to “SEE” all wanted to “OBSERVE” each held a pen and pad ready to take notes, waiting eagerly for the show to start, at this point I didn’t care i closed my eyes and wished it would be over soon, I want to go home I’ve had enough.

“I’m injecting you now and you will feel something cold going through your hand, just relax, breathe” so I breathed and waited, nothing happened the room was so quiet as if everyone was holding their breaths waiting “do you feel anything Reema?” I shook my head “I will inject you again” and he did then again and again 3 times and nothing happened, “you may open your eyes now” my father came back into the room and the mad scientist explained “I know you’re bored and want to go home but I’m going to keep you here one more night, try to lie down and get some sleep maybe in your relaxed state you would seize” and off he went with his followers all seemed disappointed.

My father hugged me and told me everything was okay and it’s for the best that I should stay an extra night. I think I’m going mad myself, I’m exhausted, those wires on my head are itchy and giving me a migraine and still I didn’t utter a word I just closed my eyes and tried to get some sleep.

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Hospital – DAY 5

by Reema on July 29, 2005

in Epilepsy

Another Delay

This morning the doctor came in for a final reviewer on my situation, I was hoping to hear those wonderful words “you can leave today” but I was wrong, he started to explain about the jerk I experienced during my sleep blah blah blah…as he talked I suddenly noticed that I was swamped with 3 young doctors, one was writing every word the doctor said, the other listening with a serious frown on his face and the last one was just staring at the ceiling, anyway long story short I’m going to stay another day, he desperately wants me to have a seizure.

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Hospital – DAY 4

by Reema on July 28, 2005

in Epilepsy

Hymns of the Night

It’s 2:36 am as I shivered of what to come, in the darkness of my hospital room i closed my eyes and there it was a moan of pain, then a cry, then a plead, five pained voices filled the ward, I could hear one drowning in his own saliva as one of the angels of mercy ran for his aid, another high pitch scream that sends shudders through my body, and another and another….yet I ask myself why do I fear those haunting eerie voices when soon I too would join the chorus? The signs were already showing on my body, my monster is ready to come out it only awaits my sleep, for my sleep is the only door that it could escapes from.
“Patient in room 3437 is having a seizure” the nurse shouted to her fellow nurses, tonight we had 3 seizures from my companions next door, I wonder would my room number be called next? Would my monstrous seizure sound fearless like the others? Would I moan and scream in pain? Would I drown in my own saliva?
Would I wet my bed? Of course I would and much more, how humiliating that strangers see me in this condition, then again to them it’s normal because they’re trained for it and see it everyday. I looked at the number on my door 3438, it’ll be known so very soon and just before I went to sleep I drank a glass of water so when my turn comes to join the chorus I want my voice to be different among the wailing and screams.

Finally Rewarded

I woke up early morning around 8 am, thank god nothing happened, my doctor with his apprentice came in and as always asked me if I had a seizure or not, when I told him of my jerking experience I had yesterday afternoon he almost jumped with joy, he smiled widely showing his white teethe and said “good good I will go and check your EEG scan and the video, hopefully tonight you’d get it” what a strange thing to say? and off he went to seek his bounty.

Last Night

It’s quiet tonight, no moans no screams no pain, funny it doesn’t feel normal, I guess I got use to it who knows…today I saw one of my epileptic companions going home and I felt sad, one voice gone another would follow.

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