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Emily’s Perspective: Newly diagnosed with epilepsy or epileptic seizures?

Emily's Perspective: Epileptic SeizuresAre you new to Epilepsy? Have you had a recent diagnosis of epileptic seizures in your family? Maybe I can help ease the anxiety with this column.

Epileptic seizures

Before diagnosis, when everything is still very raw, very scary, very “new”, it’s hard to get your head around things. It is important to understand that seizures take many forms. Before your doctor can prescribe the right treatment, he or she must figure out which type (or types) you have. Yes, you can have more than one type!

The tests can be scary, but to help you will find the purpose of all the tests discussed in the Diagnosis section. These tests will help your doctor determine not just to tell whether you have epilepsy, but also to tell what kind.

Seizure Types

Over the years, after tests, scans, appointments, both Mum & Myself seem to have become experts in Epilepsy! Well not quite, but it’s amazing what you learn from something so scary. One thing we have learned is the Commonly Used Names for Seizure Types. Seizures are generally put into two major groups of seizures, primary generalized seizures and partial seizures, which maybe you knew already.

Generalized Seizures

The difference between these types is how and where they begin. For example, Primary generalized seizures begin with a widespread electrical discharge that involves both sides of the brain at once.

When I was first diagnosed, my EEG results showed epileptic discharges affecting my entire brain. I was originally diagnosed with having Petit-Mal seizures. Other types of generalized seizures include: Myoclonic seizures and Generalized tonic-clonic seizures.

Partial Seizures

Secondly there are Partial seizures. These begin with an electrical discharge in just one limited area of the brain. Many different things can cause partial seizures, for example head injury, brain infection, stroke, tumor, or changes in the way an area of the brain was formed before birth. Many times, no known cause is found, but genetic factors may be important in some partial seizures.

Simple vs Complex

Partial seizures can be broken down further, depending on whether a person’s awareness or consciousness (the ability to respond and remember) is affected. It may seem confusing, but it’s really good to know all the facts about different epileptic seizures, and it is also really interesting!

A partial seizure can be categorized as two types: We firstly have the Simple Partial Seizure. If you experience a simple partial seizure, you will not lose consciousness, and it will last for a minute or less. You will remember what happened after the seizure has passed.

Then there is the Complex Partial Seizure. If the seizure is complex, you may lose consciousness and you will not remember what happened. A complex seizure can last for a minute or two and may be preceded by a warning sign (an Aura) such as a feeling of uneasiness or nausea. You may feel sleepy and confused afterwards too.

New ‘Normal’

Having Epilepsy does not make you weird, strange, odd, and it is not contagious. A lot of my old school friends thought they could catch it off me, they also thought I was very strange because I looked a bit “silly” when I was staring. My friends use to think that just because I didn’t jerk or convulse, that I couldn’t have Epilepsy. But, there are over 40 different types of seizures!

When you first start a new school, job or if you are meeting new people, it is difficult to know whether you should tell them about your condition (or your child’s condition if they are in school). I feel it is VERY important to let people know, because if something were to happen it is useful to have an ‘eyewitness account’. That way if you had to go to the hospital the witness could explain what happened and whether or not you hurt yourself. But not everyone agrees. You will have to make that decision for yourself (or your child.) I wear an epilepsy band that has my details on in case I have a seizure in public.

It can happen to anyone

Anyone can have a seizure or a diagnosis of Epilepsy, no matter their class, their lifestyle, how much money they have, anybody! If anyone wants to learn more, or if you have any questions, please leave a comment below and we will get back to you.

Always remember, you are not alone.

2 Responses

  1. Avatar
    Ana
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    Dear Emily, I’ve come across your blog just today and I think you’re a beautiful, brave young woman! My 11 year old boy has been living with absence seizures for nearly 8 years now, and it’s not getting better- just progressed from Child Absence to Juvenile Absence Epilepsy, with a generalized tonic-clonic that happened just three weeks ago….Oh, I am so tired of searching for explanations, I am going through ups and downs all the time, I have no idea how to even start explaining to teacher and coaches and friends… I do have tons of questions, but for now I just want to say I admire you for being so open and brave and I can only hope my child will at some point of life have your courage to put up with this condition the way you did. Stay strong!
    Lots of love, Ana! xx

    • Avatar
      emilysian2014
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      Thank you so much Ana, this is beautiful. I hope things start to get better for your little boy, I was 10 when I started having seizures so I understand. If you’d ever like to talk, need advice on how to approach people regarding the seizures, or if you just ever want to talk about things I am always here, feel free to contact me and I will do my best to support you. Lots of love, Emily xx