Month: November 2014

Caitie’s TedX Talk about Epilepsy

The unedited version of Caitie’s TedX Talk is now online. Starting at about the 23:30 mark of the video you can hear what she has to say about living with Epilepsy.

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Ellie’s Story

Hi, I am Elena Rayne. But many knows me as Ellie Rayne. Or even Ellie’s Journal blogger. I want to tell you of my own Epilepsy story.

My mother was not the type of woman that could give birth to children the normal way. Unfortunately, she never knew about that until the last 24 hours of labor with  me. She entered labor on 28th September around 7.45pm as my Father recalls. But, I was still stuck in her womb at almost midnight on the 29th of September! The doctor proposed to do a Cesarean Section surgery and get me out quickly as he was concerned that I might die before I could be delivered. The sad part is, when I was saved from a tragic death in my Mother’s womb, it was determined that I had stayed in her womb too long.
I was placed in an incubator for three weeks after I was born. From time to time seizures occurred for me within the incubator itself. This lasted until I was 4 years old. And then the seizures stopped. I didn’t have another seizure for 6 years.
Then when I was around 10 years old that changed. One night I was finishing up my homework and then I went to take a nap in front of the television. My family was relaxing on the sofas talking to our neighbours.
Next thing you know, a seizure hit me while I was napping. I was told by my parents that I had a serious one. It lasted from 10.34pm until 8am the next morning. The doctor told my parents that by the time I came out of the seizure,  my whole life, identity, memories and basically all that made me, ME, would be gone for good. He said I would not recall anything and that I would most likely suffer a major brain deficit. Brain damage was inevitable after such a prolonged seizure. My parents were devastated.
But then a miracle happened. Thanks to God, I did wake up. At first I thought I was still asleep in front of the television at home. I was surprised to see a white-tiled ceilings instead of the normal ceiling  from home with the wooden fan spinning above me. As I rubbed my eyelids a nurse came to tell me to lay down. I thought I was actually dreaming. So I started to call for my parents. They came to me instantly along with the doctor. They asked me for my name, age and what year it was. They asked me to identify my parents names and their ages, They told me to identify pictures of animals from a stack of cards! What am I? A kindergardener? I am a elementary (primary) school girl sheesh!  Give me a break!
But since then, my seizures comes 2-3  times in a week that actually rotates every 4-5 months. It is getting better actually. I am glad I am still living to this day. I am 23 this year.
Sincerely,
Ellie Rayne

Faith Motivates Advocacy for Epilepsy Awareness

by Dan Dougherty

Have you ever lost your car keys and were faced with the prospect of not knowing how to get to work, school or meeting a friend for lunch?  How did you feel? Since I was diagnosed with uncontrolled epilepsy thirty (30) years ago, I have dealt with this limitation on a daily basis.

Epilepsy is a neurological disorder that causes sudden unexpected electrical charges to the brain, resulting in what is commonly known as a seizure.  It doesn’t “get the press” that it is due and, therefore, you may be surprised to learn that, in the United States alone, there are three (3) million (almost 2 out of 100) reported cases. To put it into context, that is more than the total number of people suffering from Cerebral Palsy, Parkinson’s Disease and Multiple Sclerosis (MS) combined!

Throughout the ages, up to the early twentieth century, individuals suffering from this disorder were treated as if they were possessed by the devil or were mentally challenged and placed in an asylum for the rest of their natural lives. For many years, because of this stigma, many people would be too embarrassed to admit that they had epilepsy.

Thanks to modern technology, we have moved beyond the fears and superstitions of the past. Doctors can locate and identify injured portions of the brain that cause seizures and develop an appropriate treatment plan. A majority of people with epilepsy have brought their seizures under control with medication and live relatively normal lives.

Thanks to my faith and the loving support of my family, I have met the challenges and accepted this cross God has given me as a gift to speak openly, as an advocate, about the limitations that come with epilepsy. I am reminded of those hopeful words: “When God closes a door, He always opens a window”.

You can read Dan’s story about living with Epilepsy on Health Central. And check out Dan’s website: http://about.me/dan_dougherty

Derrick’s Story

My name is Derrick. I had my first seizure when I was 9 years old. No reason, no known cause they just started.

It didn’t take long before I realized I had to quit sports, and I realized my dream of becoming an aircraft mechanic for the US Air Force would never happen.

The next 9 years of my life would be hell: grade school, junior high, high school and about a year or so after high school.

For those 9 years I had the worst neurologist ever, he often contradicted himself and did no help in convincing me and my mother that there was hope for resolving my epilepsy, and our health care offered no other options for us when it came to neurologist in the area.

But if anything came from my epilepsy, I would say it would have to be some of the best friends in the world. When you have epilepsy, you become a responsibility for those around you, and only those who truly appreciate you as an individual will not have an issue with maintaining that responsibility. When my friends and I would head out for a weekend road trip they’d always ask and make sure I had enough medication. They’d pick me up at the beginning of the night and drop me off at the end of the night.

When I turned 18, I got put under new health care and was able to see a new neurologist. By this time I was having 12 seizures a day: mostly partial complex but at times grand mal. I was on over 3,000 mg of medication a day.

I remember the first day visiting my new neurologist after telling him my story he replied “This is ridiculous you need brain surgery”. We suggested VNS therapy first but he insisted the success rate was too low.

About 6 months later I went under the knife, and had a section of my right frontal lobe removed. I have now been seizure free for 11 years!

At 21 I got my driver’s license, at 25 I got my motorcycle license and started college, at 27 I got my Bachelors Degree in Audio Engineering, and now I live in the Silicon Valley employed as an IT specialist.

I wish there was more I could do for the epilepsy community with my knowledge of computer programing, electronics and sound. When I was in college I wired an EEG machine to my computer and made a program that translated your brainwaves into music in hopes to help kids understand the functions and different parts of the brain. I suggest to anybody with partial epilepsy consider brain surgery.

David’s Story

The problem with trying to tell the story of how your child developed epilepsy as that each of us could really write a book. I see why people write blogs. I’ll try my best to keep this as concise as possible! I’ll miss out some things and try to keep to the basic story.

David was our second child. He had an older sister who was ridiculously pretty and engaging but who seemed to be born without the need to sleep so we were in a hazy state of exhaustion most of the time. She was two and a half when David was born and by some wonderful coincidence started to sleep through the night. David was an almost caricature sweet baby. He was quiet, content, slept really well and was always so cheerful. He never seemed to cry! Honestly, on a morning we’d know he was awake because we’d hear him giggling in his cot! So we went from being a sleep deprived couple with one child to being an energetic, spoilt for sleep couple with two kids. He carried on being like that as he grew. If he ever cried we’d really panic because it had to be serious. When his younger sister was born he was protective and helpful. I’m not exaggerating he really was and is the loveliest kid.

We always tended to go to colder places on holiday. I have family in Iceland and my wife has a thing in general about Scandinavia so it was what the kids were used to. I have loads of pictures of them on the beach playing with jumpers on! Finland was always sunny though. One year we went to the Isle of Lewis in the Outer Hebrides. It is unbelievably beautiful. David was not far short of his sixth birthday and we were playing on Uig beach (the big one). My wife was dozing and I was playing cricket with the kids. Suddenly, David grabbed his right arm just above the elbow. His right hand then jerked up to his eye. He did this suddenly as though something had either hurt his arm or his eye. He then started making the most awful noise. It’s hard to describe. A bit like the sound you might make in your throat if you’re trying unsuccessfully to lift a really heavy weight but it was strangled, high pitched and sounded as if he was in terrible pain. He fell to his knees. It lasted for about 20-30 seconds. By this time I was sure he had sand in his eye and for some reason it was particulary painful. I got a water bottle and tried to wash his eye but it seemed to be alright. We were a bit shaken but he just wanted to carry on playing. Then about an hour later it happened again. We were totally baffled. The worst thing was that he seemed to be in dreadful pain. There didn’t seem anything outwardly wrong with him but it was really worrying. He was fine for the rest of the day but then it happened again when he was in bed having a story. The following morning we took him to Stornaway Hospital by which time it was happening every 40 minutes so he had a few in the hospital, which was handy. They told us it seemed to be some kind of seizure and it would be best to get him home. They gave us a letter to give to our G.P.

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David was his normal bouncy self, never miserable or fed up. His sisters were worried and tearful. My wife was strong in front of the kids and a mess with me. I was just convinced he would have his arm amputated or lose his sight. I can’t tell you the fear you feel when there is something wrong with your child and the awful feeling of failure that you can’t fix it for them.

I took him to our doctor. He said he’d refer him to a pediatric neurologist, which might take a week or two. David had another seizure in the car on the way home. I didn’t go home. I drove straight to the nearest hospital and walked into pediatric out-patients! I grabbed the nearest member of staff and tried to explain and right on cue David fell to the floor having another seizure. Because of the noise he made and the fact he wet himself it was pretty dramatic and soon he was in a side room being examined by a series of pretty fascinated doctors. He stayed in hospital for about 3 weeks. He had scans, EEGs, all the usual stuff. We were warned it may be a tumour. When it was finally diagnosed as a highly unusual form of epilepsy we were so relieved that he wasn’t going to die. I actually cried my eyes out not because I was upset but because I was relieved.

He was started on medication. He has had so many different types but it was good old Tegretol Retard that worked eventually. He had several months completely seizure free. School was fine. Everything was fine. I got a new job in Singapore so we moved out there. We had a communal pool with our neighbours! Life was great. Till the seizures came back.

This time they were more obviously epileptic seizures. Not only did they come back but they were unpredictable. Sometimes tonic clonic, sometimes – in fact mostly- just the tonic without the clonic. Focal. Simple partial, complex partial. He heard noises sometimes which scared him. He injured himself on every part of his body. Worst was when he fell and had a tonic clonic on a broken plate and needed a long operation to reconnect the tendons in his arm which were sliced through. He’s had seizures on stairs, in the road, in mid-air as he’s gone to head a football. You name it.

He still was mostly the cheerful little guy he’d always been but sometimes he just lost his confidence. He never had a temper so when he just didn’t want to go out he’d sit on the stairs, lean against the wall, his face would crumple and he’d cry quietly. Some of his friends were scared away and there were a few parties he wasn’t invited to. Mostly though people were wonderful. Especially his teachers. David always loved PE and especially swimming. The school still took him swimming and one of the male PE teachers swam along next to him so he could still swim. When he was at his lowest usually some act of kindness from friends or even people we didn’t really know lifted his spirits and ours. We missed our family though and the NHS so eventually we came home even though my job prospects were patchy.

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Life has been mostly centred around trying new drugs and you all know what an eternity it seems to take to come off one drug and introduce another. Again and again. He went through a dreadful time of having long auras which took the form of a feeling of intense fear. He’d sob, clutch things, break pencils, shake and it would go on for up to an hour and then he’d have a seizure and it would stop. Then it would start again! He was taken into hospital again and given high doses of something or other which did nothing but make him puke for days on end. The lowest point for him and definitely for me was during one of these auras he pleaded with me to kill him. As it always seems to go with epilepsy this period stopped as suddenly as it started and nobody knows why.

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David is eleven now. After a couple of years during which his epilepsy seemed to settle down to being mostly tonic clonic and occurring maybe once every two or three days, about a year ago he entered his cluster phase. That is he’d never have one seizure he’d have a cluster, some of which didn’t respond to his emergency medication. This has been the phase of getting to know the paramedics by name. We had a few dramatic ambulance rides and two occasions when we nearly lost him. You know it’s bad when they run down the corridor with him on a trolley and don’t let you in! He was taken in for a day to see how he responded to buccal Midazolam and that luckily worked really well with just one or two exceptions. Mostly if we need the paramedics we can get it sorted at home eventually.

Earlier this year he was still on a mixture of Tegretol and Zonisamide but they introduced into the cocktail one of the new generation of drugs, Perampanel. I hardly dare talk about it in case it jinxes him but it seems to have worked. Since July this year he has had two clusters (just about 5 or 6 short seizures) and nothing else!!! He had a clear summer holiday in Finland and Sweden and swam, rowed, walked, had saunas, late nights and early mornings, which were always his worst triggers and not one seizure.

I can say that life is normal because this is our normality. I have a settled job, we had a fourth child (I know!!) and things seem good. I know the thousands of seizures he’s had and his medication have effected him. His memory is erratic, he struggles with sequences like months and days of the week, he struggles to write by hand, he used to be a good reader but now he reads a paragraph and 8 times out of 10 he has to start again. Lots of things like that. Yet he never complains, rarely feels sorry for himself and still has his sunny disposition he seemed to be born with. He loves his sport, still likes swimming if someone big is near him. I do worry about his future but what parent doesn’t and today’s been a great day so that’s a good start.