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please tell me about your experiences with epilepsy and your education

Hi guys,

So I also have epilepsy (grand & petit mal although luckily i've been seizure free for almost 5 years now) and am currently doing my training to become a secondary school teacher.

I am finishing up in a few weeks and on the 27th of october I have to give a 15 minute multimedia presentation on an area of special-needs in school.

I have chosen to do epilepsy as my topic because while I was on my placement in schools, many students were affected by it but it was still quite secretive and there didn't appear to be any in outlined support for these students, which was quite disappointing. Although my personal experience ranged from an awesome compassionate school nurse, another person who wouldn't let me have my pills on me so I had to visit them each day to pick them up, one teacher who I refused to talk to for over 2 months because they (imo) made no allowances, to another who had the patience of a saint through panic attacks and would always stop and spell words for me when I couldn't remember (my biggest problem was not the seizure although they weren't fun, it was adjusting to the medication)  

So, could you please tell me

a) how having epilepsy has influenced you or your teen in school (social/physical e.g co-curricular activities aspects)

b) what has been the most difficult aspect to deal with in terms of learning / what has been the biggest barrier to learning  (here a more academic view)

c) what your school does or has done to help you or your teen / what have they done that has had a positive or negative impact. (can be individual teachers approaches as I descibed above, or the whole school approach, do they provide a teacher aide etc)

if anyone would be willing to make a short video clip (i only have 15 minutes and this is a small part of my entire presentation) or a podcast it would be so very much appreciated the only incentive I can offer is that this presentation is going to be given to a class of 20+ future teachers to be, so telling them our stories can only better prepare them to have positive experience with future students of theirs who may also have epilepsy.

my email address is portiaholmes@gmail.com 

thanks

portia

Comments

Re: please tell me about your experiences

I wasn't diagnosed until my 30's but I remember my school years well . I have JME and remember not being a morning person . I would have shaky hands and often things fall out of my hands fly across the room . My parents assumed I was clumsy and nervous person .
Loud noises like my alarm clock in the Am made things worse and as the years went on I learned to awaken before it rang cause it made my day so distressing starting off with limbs jerking while I tried to wake up. I had teachers ask my mom to get my eyes checked or did all kinds of tests on my abilities as I often didn't focus well and spent my mornings spacing out and not focusing on the school work so I suspect I had other types of seizures but they seemed to taper off as a adult .

I had many jerking episodes while staying up late drinking alcohol or hanging out in night clubs with flashing lights but I still didn't clue in to it being abnormal as it was normal for me my whole life .

I took practical nursing in college and on to work with seniors in a long term care home. I saw many older people with dementia and had same jerks due to brain damage or strokes .... and I still didn't think it was same issue but I started to wonder . It didn't take long for me to have tonic clonic seizure on a medication that induced it but the docs didn't think much of it till I had a second while not feeling well and on antibiotics . I had many tests including EEG and things came back abnormal but I knew before they read the results as the EEG didn't go very well . The EEG was painless but when they flashed strobe light in my face I jerked all over the bed and I knew that was bad reaction.

I took a few different medications which are very hard to adjust to even as a adult . I feel for any child taking the anti seizure meds as they are very sedating and concentration is out the window making it very difficult to focus on old tasks let alone learn new things . It is taking me months to get used to the doses of meds I'm on and yet I'm due for another raise in dose soon as seizures continue so the medications aren't magical or a cure all.

Limitations on lifestyle are very depressing and often make me sad . No driving , no swimming all dangerous activities are not to be done or are limited under supervision . The limits make you feel like a child even as a adult . Its like you always have a parent over your shoulder saying "NO" or "Go to bed early or you'll be sick in the morning and regret it ". Its a slow adjustment but things are good now and people are amazing on how they adjust to a new life style . I'm amazed how fast I adjusted even with limits I work around them but couldn't often do it without good friends and family .

I'm still same person and still feel the same as any one else and I love that my friends / family are kind and understanding and treat me no different than others . People are helpful to me and understand when I don't feel well or have a bad day .

Re: please tell me about your experiences

thank you! really appreciate this, do you remember what it was like when you first started your medication and can describe the effects of it?

mine was now too long ago, and i think my thought processes have kind of changed as i was always very logical and practical, then on my pills this changed, i've kind of normalised now though and am fairly high functioning although would love to know what its like not being on the meds! but my main recollection was sitting in class taking notes and for the life of me not knowing how to spell father which was so strange, and i also didn't even think to just spell dad. it was like my head was in a fog, i havent taken any other drugs before that i can compare it too, or had a sickness that made me feel similar, its strange.

Experiences with epilepsy and education

I'm 15 and was diagnosed with epilepsy about a year ago (JME). The most awkward part was that I don't want the whole year to know but teachers don't necessarily realise this. I had been due to go on a residential geography field trip which I ended up missing as I wasn't on a full dosage of medication. I then missed out on a week's worth of work and the teacher told the other girls that I wasn't going to be coming without giving a reason. This led to quite a few questions when they returned. The teacher also kept commenting on how annoying it was that I'd missed the trip as though I had in some way planned on developing epilepsy. Fortunately my friends gave me their notes to use in the coursework and I was somewhat smug when I did better than most of the girls who went.
However other teachers have been extremely nice and ask if I'm ok when I look tired. The school nurse and school doctor have also been very understanding - the school doctor has a son with epilepsy. One thing I have experienced is being asked if I feel alright by the nurse when she was worried by how pale I was, which was confusing until she realised that it was my natural colouring.
When I was late into school due to episodes everybody was very understanding - including the receptionists.
Later I took part in D of E and the school made sure that I had my normal medication and they had emergency medication. On the expeditions we were accompanied by instructors - on the practice it was organised so that our group was with a paramedic who was never too far away and on the real expedition we met the instructor at set points.
Fortunately the medication has had few side effects - I take epilim chrono and the only effect that I have noticed was a temporary thinning of hair (not too noticeable as it was thick and curly to begin with). I haven't noticed any academic side effects so the main problem was missing school in an important year.

Re: experiences with epilepsy and your education

A big area that is just starting to be studied is how seizures affect the quality of life for those who have been diagnosed with epilepsy. Generally, there are 4 areas that all doctors seem to agree on: 1) Depression; 2) Anxiety; 3) Aggressive behavior during the ictal period; 4) Sexual dysfunction. Yet, no set standards of measurement have been set yet for those 4 major areas. Also, there are questions about how people react to different medicines and whether or not those medicines either increase or decrease the QoL for all people with epilepsy, not only those in school.
For example, my nephew was diagnosed with epilepsy before finishing his degree. He wanted to continue having a normal life while in college so he refused to take his medicine. There is a case of anxiety: will epilepsy and the medicines hurt his way of life during school. You have taken on a big topic and I wish you the best!