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Knowing Epilepsy "The Community"
Our Experiences

Everyones experience with Epilepsy is different. Weve complied some stories submitted by our members about their experiences with Epilepsy in hopes that people with this disorder can see that they are not alone in their experiences and others, without Epilepsy, can have a better understanding of it. Some of the stories here are inspiring, others are heart retching and no two are exactly alike but all are true and they are our experiences.

My experiences with epilepsy - where do I begin???
 
Ok, I was 1yr old living with my grandparents and father and got my first experience.  I had an Infantile convulsion, according to my grandmother I was asleep in my cot when they heard strange noises and came running to me, finding me in a convulsion and not knowing what to do they called the family doctor who came immediately and asked that I be taken to the hospital, which my uncle did - on arrival to the hospital my father gave my details to the nurse and waited for me to be seen.  After an hour and 3 times been asked my name, address etc my father wanted to know were the doctor was and why I wasn't seen to, too which the nurse couldnt reply.  My father finally got the doctor and by this time it was almost 2hrs gone by and damage was already done, but I was at last been seen to and the convulsion was been brought under control with phenobarb. My stay in hospital was 1 week and then I was released with no prognoses.
 
Five years went by and I was fine and one day I was playing in the street with some friends.  I felt funny but didn't know what was happening and then everything went blank. My aunt who was a nurse at the time was visiting and my friends went into get her and she brought me into the house, it was she who said it was an epileptic seizure I had - I was 6yrs old.  I was taken again to the hospital and examined by doctors who failed to diagnose the condition and sent me home to my grandparents. 
 
I had several tonic clonic (grandmal) seizures after that but it wasnt until I was 10yrs old that I was finally diagnosed with epilepsy, after undergoing loads of tests at hospitals and running to doctors all the time - it was a long drawn out process. 
 
Primary school was ok got thro that without a lot of trouble, it was only when I went to secondary school that my troubles started.  Because my seizures were frequent and tonic clonic, the rest of the kids in the school bullied me, called me names and chased me home after school each day.  I was made to feel unwanted and so was left to sit at the back of the class alone, to my surprise even the teachers showed there lack of interest in the fact that I was being bullied and was behind in my work.  I hated each and every day I had to rise and make my way to school.  Because of my condition I was the easy target for redicule!!!
 
I left school with minimal qualifications and decided to go on to college to try to futher my education - as I was going through my teens the seizures changed.  I started having status along with tonic clonic, but this didn't stop me from doing a secretarial course and of course the tutors here where far from the teachers in the mainstream schools - they did their upmost to understand the condition of epilepsy and to help me through the course.  I did 2 complete yrs and did half of the 3rd yr before I had to give up because of my health - I was more often in hospital than in college.  But I did get to the higher level of the course, which I was greatful.
 
I left college at 18 going on 19 and from then on had only a few jobs which lasted at the most most in weeks.  When I reached 20 and onwards the seizures took a turn again this time to complex partial, I didnt have so many tonic clonic ones any longer and the status lessoned to about 1 a yr.  I always found it difficult to socialize - go into crowds, noisy areas and therefore my hobbies were all home orientated.  Also because I was raised by my grandmother (who I love dearly) I felt I was wrapped in cotton wool and not allowed to do a lot of things children would have normally done.
 
Last year (april 2001) I had surgery, because all the meds I was on over the yrs didnt work and to date still don't when i'm under extreme stress.  The surgery "temporalobe labotomy" was done in The Walton Centre for Neurologists and Neurosurgery in Liverpool.  I spent 4/5 yrs doing tests before the surgery and then when the all clear was given spent 1 week in hospital and 1 week recuperating with my sister in Manchester before being allowed home.  Today thankfully I still have the odd seizure but not to the extent as what they once where and hopefully in time they may go as the surgery heals. 
 
Through it all though, there is 1 thing uppermost in my mind - "Look beside you and you will always find someone who needs your help more!!"
 
NAME:   Maire
AGE:       38
LIVING:   Ireland

I have been an epileptic since 1979,when I was involved in a motorbike accident; I had a fractured skull and meningitis, even though I was wearing a crash helmet. Due to the misunderstandings of people I worked with (I worked in a factory for the Disabled). I once took an overdose of headache tablets. I know of course that was such a stupid think to due, but when youve people laughing at you, calling you `Oscar`, and sly remarks all the time, and I had a few problems at home I came to the conclusion `SOD IT`

Of course I naturally know it was such a stupid thing to do, but at the time I felt I had no choice.

At the time I was living with my father (mum had died-1979) and we were never very close, but during his illness, we grew closer than we had ever been in our lives. All Im trying to say is cherish the moment because NOT ONE OF US knows what the future holds for us.

DAVID, Im 42 years old, and Im from Swansea, Wales.

Hello

My name is Margaret, I am 61 years old and have 2 girls that have the condition called epilepsy. The eldest had her first seizure at 14 months old. I nearly killed her as I hadnt a clue what it was and didnt know what to do, so did everything wrong. She was taken to hospital where they said it was a convulsion due to a throat infection. (The hospital) kept her in a week then sent her home. Her next one was when she was 3, again did it all wrong so she ended in hospital again, where they thought they would do some tests just in case. Then I was told yes she has epilepsy freaked, hadnt a clue about it so had to find out but in those days they were not so open as now. All I knew was that no matter what I would treat her the same as my other children did learn the hard way about a few things. In those days we had to put things in the mouth, well I did find out not to put ones fingers in the mouth, I couldnt feel mine for nearly a week and the tops of them went black and blue, so never did that again. Her next seizure was for 7 hours, the hospital said she wouldnt make it through the night if they couldnt get her out of it, after that she seemed to settle down ,we just knew not to over excite her but apart from that she was fine.

By now I had another little girl, when she was 3 she also started having seizures, she is also mentally handicapped. Now we knew a bit more so was able to apply what we new to her as well. I was very lucky I had good neighbours whos children played with mine and new all about the condition so that when they went out to play all the children in the street new and could help if they had a seizure in the road, which was often. Mine were never wrapped in cotton wool and made to feel different, both have nearly died at different times, both have grown to able women who hold down jobs and live life well, if they have a seizure anywhere they get up dust themselves off and get on with life, I hope my story helps anyone in the same boat.

Love to you all

Margaret 61 yrs UK

Hi

I was 14 when I was diagnosed as having 'myoclonic jerks' I had no clue as to what this meant, only for the fact I kept falling down, especially in the morning.

I was sent to a neurologist who explained the situation to me, he was very good and kind. However my mother and family treated me as if I was poisoned in some way. My Mum had had me when she was 42, and felt it was her fault. I was then treated as the 'special one' on the family. I just wanted to be left alone to get on with it. It used to really annoy me when things would fly out of my hand or I would fall and I would make up some silly excuse.

I managed to cope with the epilepsy and the extreme tiredness until I was married and expecting my first child. Then, at 7 months pregnant, it got really bad. My myoclonic jerks became uncontrollable and then that went on to be grand mal attacks. It frightened me like hell.

I was scared for the future of my child. I was assured by the docs that there was a slight chance my chance may have the epilepsy but more of a chance that she would have spina bifida cause of the medication I took.

She was born ok, and has been ok since, but 4 weeks after she was born, my epilepsy worsened. My health visitor suggested that my husband should be at home all the time to make sure our environment was safe, and the same happened when I had my second child.

My youngest is now 10, both children are brilliant!! They know mum has to sleep a lot, they know to be quiet when I am feeling not well, and they know what to do when I have attacks. I am blessed to have 2 kids who understand how to look after Mum. They look after me much more than I tend to look after them. Its such a shame for them.

My first marriage fell apart (nothing to do with the epilepsy), and I met John, my now husband. With him, came another 4 kids who have all learnt to cope with me for the way I am.

Its the tiredness that really gets me down, and the weight I have put on due to the massive amounts of medication. Another thing I would like people to know is that Sodium Valproate (epilim) causes Polycystic ovaries in women. This IS A KNOWN FACT!!!! Women need to be aware of this. It causes massive weight gain and infertility. Thats the one thing that really hurts more than anything.

Hope this helps

Nicky 36 UK

Hi to all,

This is our experience with epilepsy, which isnt much. We have been fighting a long up hill battle. Brandi is 4 years old and has been dx about 4 months ago. She also has asthma and sensory integration dysfunction. She has been taking tegeratol without any improvement. Today the doctor put her on Depakote. Unfortunately I dont think this med. will work either. Shes only had one dose and she is completely out of it. It is sever and she doesnt seem to know what is going on and is even wetting her pants. I know shes only had one dose but this is some severe side effects that we dont want for her. We are frustrated with not know what to do to help her and trying new things and nothing works. We have to have her evaluated in June to see if she has autism. We are very scared the test will just give her another dx and we still wont know how to help our daughter. This all has effected our entire family because of rearranging our lives. Our over children are getting use to Brandi's problems and are trying to adjust to but it is difficult at best. I've had to quit working so I can take care of Brandi's needs back she has problems at school and they call 2-3-4-5 times a week telling me to come to the school to help deal with her because they dont have the staff to deal with her. We have no clue what to do so we pray alot that we will find something for her that will help. Thanks

Brandi's Mom USA IOWA

Hi my name is Liz, I am 32 years old, single mum and full timer carer of my 11 year old son who has epilepsy.
I live in England and I not sure were to start with my story, so I start at the beginning cause it a long one hard one.
I was 25 weeks pregnant when I got chicken pox which I couldn't believe as I never had any illness in my life, after a long and hard pregnant I give born to Benjamin who weight 8lbs 4 oz was so happy the he was well and fine.
He was growing normal and seemed to be eating well, then one day he was about 5 months old and he was in his pushchair.
When I felt that there was something not right with him. I looked over to his pushchair and he wasn't breathing,
I run over screaming pick him up he wasn't moving or breathing was the worse nightmare of my life.
I ring for a ambulance and it seemed like a life time before they got to were I was living, while I hold my baby boy who was lifeless in my arm's, when they ambulance come they put him straight on oxygen and rushed him to the hospital.
That was my first experience of him having a febrile convulsion which don't mean a lot to meat that time, over the next 3 days he was he hospital he had 3 more of them. At the time the doctor we were seeing said I wasn't to worry as he may never have them again and to take him home and give him lots of love, which I do I watch him for a bit then I take him home cause I though it was me that was seeing things. Anyway about seven months old I know were was something wrong with him, but I can't put my finger on it. I take him to see my GP as I was very worried about him and was told by my GP that I was over acting about him and there was nothing wrong and to go home and come back
when he was ill. I wasn't happy about 2 day later I take him to the hospital were I told them about him, he was twicking his left arm all the time, they said they would watch him for 24 hours cause were he had been in hospital before with febrile convulsion. They take him up to the ward were he start fitting again but this time its was worse, he wasn't stopping they were giving him drugs to try and stop him but he had gone status epileptics and was fitting for a whole hour. I never even heard of it or what it meant, he was unconscious. They run lots of tests on him and they find out he had severe haemophilus influenzae meningitis and sepitcaemia (blood poisoning), he was very ill in hospital for the next three weeks, was worse then they told me that if I had bring him into hospital at that time
I would of lose it. When I come out of hospital I went straight to me GP and had words with him which weren't nice ones, he said he don't realize how ill he was and I said will next time we mum always right cause we are round them 24/7.
Over the next years Ben has got a lot worse, he has been in a non-convulsive status which showed up on his EEG and he trued steroids which are now not working for him. He has tried all these drugs for his epilepsy
phenytoin.
carbamazepine.
sodium valproate.
acetazolamide
vigabatrin.
lamotrigine.
ethosuximide.
pyridoxine.
triple bromide.
gabapentin.
topiramate.
clonzepam.
ketogenic diet.
oxcarbazepine.
dexamphetamine.
prednisolone.
piracetam.
clobazam.
stirepentol.
levetiracetam
and lot of other drugs, which I can't remember they names. Benjamin has had rule pneumonia and a year old. And he has other problems which are attention deficit hyperactivity disorder, severe learning difficulties with regression, about 2 years ago they find out on his 7 MRI scan that was a left frontal polymicrogyria (a rare brain disorder) and were he fits are getting worse they say he has intractable cryptogenic epilepsy with generalized and partial elements.
He is having from 3 fits a day up to 30 fits in 24 hours, lasting from 30 seconds up to two and half-hours.
He has had MRI scans, cats scan's, csf lactate, white cell enzymes, copper, caeruloplasmin, copper oxide, urate, biotisidase, tft's, amino and organic, skin, and muscle biopsy, eeg and a week of video his fits while on a EEG.
In one year he had over 3,000 that was a very bad year for him, the doctor in Yorkshire have said they can't do any more for him. They have done everything they can to try and control him or at less make him better, but they can't he is going into Great Ormond street in London for a MRI scan and tests and a telemetry monitoring to see if they can see anything which they have missed that can be looking at him for a new pairs of eyes. There is only a operation left for him which can only be done in London if they can pin point were his fits are and if they are not all over his brain, Ben has at least 6-9 different form of epilepsy.
The worse thing about this I have watch my beautiful little boy get worse and not being able to help him, he know is only at a level one and he can't walk far anymore, he is a prison in his own house. He has no-one but he to look after him and the worse thing is knows that he not going to get better and trying to
give him the best quality of life going for him.
Its most be hard for him too wondering why he wets the bed when he had a fit which upset him, and wonder why he lie the way he is. He may be 11 but he has a mind of a 4 year old who weight nearly eight stone, but I don't care what anyway think he my special boy and I do everything I can for him if you need any more about Ben please let me know.
Yours Sincerely Liz
Liz, 32, England

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