Epilepsy Pages



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Why did I do this page?

Well thing is I have Epilepsy and until now haven't really talked about it on the internet. Not many people know I have it and I want to explain why I do not tell people the thing is most people don't understand you may think you do but you don't. You don't know how are feel when I tell people and how they react. Normally it's things like oh I'm so sorry. I just want to slap them it's not like I'm going to die tomorrow yes it can kill me but only if I can't breathe or I knock myself out by falling on something. Next people start talking about things they have heard and weather it is true or can I drink and can I have kids. I have got so I don't want to talk about it as people then see me in another way like I'm going to die every second and they have to make sure I don't fall over.
I have read many stories on the internet over that have finally convicted me to write this page to tell you some of the things I have been though because of it.

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Epilepsy the facts What type of Epilepsy? What happens in my fits? What do I do if you have an fit? How did I find out I had it? Hospital nightmare Every Day So what are thes drugs you take? Page 2

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Epilepsy the facts

Many people don’t understand this illness they don’t realize they are many forms of it and they don’t know that it can be controlled. These pages I have set out to try and explain to people abit more about this illness.
This illness is a lot more common than people think 1 in 200 adults has recurrent Epilepsy and 1 in 80 people have had a seizure. This illness can strike at any time of life although the most common age is from birth to 21. After another long illness or head injuries from a accident it can also be brought on.
They are many forms of Epilepsy here are a few of them. Tonic-clonic (Grand mal) the one that I have and that everyone thinks about when they talking about Epilepsy.
I have gathered this information from British Epilepsy Association web site the following is a word for word version as I don’t really know what happens.

“The tonic part of the seizure is when the person goes stiff. The brain cells are connected to other nerve cells through the spinal cord and when a tonic-clonic seizure begins this communication system triggers all the body’s muscles to contract.”

This is why a person stiffs then shakes and clenches they teeth. After the shaking has stopped the person is unconscious and can not be woke up.

Absence (petit mal) this type is when someone stops doing what they are doing does not realize people are talking to them as if they are daydreaming.

Simple Partial some people have these and don’t realize it’s Epilepsy till they go to the doctors they can often deveple into more serious forms of Epilepsy. The person remembers what is happening to them they might feel sick, sweat twitch and get a funny taste in they mouth they may also have deja vu feeling.

Complex Partial very common Epilepsy type you don’t know what your doing you act as if drunk and might dorepeated actions such as swallowing.
They are more types of Epilepsy to find out extra information on the types I have talked about and other types go to
the links I have listed.

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What type of Epilepsy?

There are many types of Epilepsy from the feeling an bit dizzy so people carry on talking to people but they feel as they say out of it some people have an standing fit where they kind of close they eyes for a bit some just faint. They are the lucky few who know when they are going to have one so can warn people.
I am one of the unlucky few who have what are called Grande Mal fits (French for big/large illness) or it is also know as tonic-clonic this means I have no warning of having an fit I just go and have an big fit full works shaking all over and sometimes foaming at the mouth.

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What happens in my fits?

The true answer to this is I don't know I am out of it and can't remember anything I will tell you how my mum described what happens.
"One mintue you were stood there then the next you were on the floor. You were shaking all over and I was so worried about you. After you stopped fiting you lay there really quite. I got an wet flane and bathed you forehead as you were so hot. When you started to come round you were confused you didn't know what happened. You told me you loved me then asked what happened. I had to tell you and you cried. So I took you to the toilet then put you to bed. It was like you were an child again."
I was 19 when she told me about this fit.

From my point of view

I was talking to my Mum the next thing I remember is waking up on the floor I was very tired and hot and wanted to go to the toilet.
Mum told me I had an fit and I remember crying why again I hate them so much. Mum put me to bed and when I woke up I had an really bad headache I though I was going to die it was that bad.

The things they don't tell you.

Foaming at the mouth is not made up it does happen and when I have my fits most of the time I do foam. I think it's got something to do with trying to breathe. You never know what's happening to you and you get so tired. You can loss control of your bodly functions and wet yourself or worse. That is one thing they keep from you I haven't as yet done this but I always need to go straight after.
One of the worse things that happened to me was that I had an fit at an friends house early morning and they didn't really know what to do so they phoned for an ambulance and I really needed to go to the toilet so they helped me up the stairs I was still an bit confused. I remember looking at the toilet and the basket next to it and to this day I can't remember if I lifted the lid of the toilet or the basket and peed. I never asked my friend I never wanted to.

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What do I do if you have an fit?

Move all the objects around me so I don't injury myself. Don't put an spoon or an other object in my mouth while trying I could bite your finger off I clench my teeth that hard. Don't restrain me just let me have the fit. Don't call for an ambulance unless I am not coming round or you think I have stopped breathing.

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How did I find out I had it?

I was badysitting at the age of 16 with an friend and when the parent of the child that we were badysitting got back I woke up and had an fit. This was the first one I remember being in my parents car and being taken to hospital my friend had phoned them. They had got mad at her because they thought she had given me drugs, they nearly didn't let me see her again. My parents kind of tired to sweep it under the carpet thinking I wouldn't have one again I had another one morning at home then one while waiting for an bus to go to work I when they realized it could be dangours and it wouldn't go away.

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Hospital nightmare

This is where all the test started. We went to the doctors who booked an appointed to see an specialist. The specialist sent me for brain scans, blood tests and an ECG.
Brain scan this was very scary I was made to lie down the nurse that did was wearing protective clothing this scared me if she had to where that why wasn't I. I had to lie real still while I was moved into an tube that scanned my head.
Blood test everyone knows these aren't the best in the world but imagine sitting there with an needle in you arm as they take 3 tubes of blood from you.
ECG this was the worse part
They put gel on your hair then an cap with electro's on it then they hook you up to an machine this measures your brain patterns they then put an light in front of your eyes and make it flicker to see how your brain waves react.
The worse about this is after wards it take ages to get the gel out and you feel all tired.
Well I went back to the specialist he told me I had epilepsy and told me which tablets I had to take. I went outside and cried why me I was just about to start learning to drive.

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Every Day

I take four tablets an day some people have to take more some people less. 2 in the morning and 2 at night. If I forget to take them I could have an fit. It changes you life it really does I have to make sure I get enough sleep because an lot of my fits are triggered by not having enough sleep or been stressed. Most of the one's I have are in the morning.

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So what are thes drugs you take?

I first started to take Sodium Valproate (Epilm) when they told me I had Epilepsy this is the most common drug that is used as it is used for all forms of Epilepsy. I started taking 400mg a day then went on to 1000mg a day then 1500mg a day I started to feel really ill with this new dose so they put me down to 1000mg a day. When I first started taking this drug I put on a lot of weight I went from a size 12 (UK sizing) to a 14/16. Sodium Valproate is
also used for heart condition.
When I started to get seizures again the doctors said my Epilepsy was no longer controlled so I had to go though all the tests again and then I was put on another drug to be taken with the other drug. I now take Lamotrigine (Lamictal) twice a day a drug so strong that I had to take it in small doses till I was use to it. I felt sick tired etc before I got use to it basically all the side affects you get from it, I now am on 100mg a day. I can’t stop taking it as
I will have fits straight away and I will be very ill.

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