Ugh!

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Trinity

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I have a new job (this is week 5) and I absolutely love it. I am working as a teacher of students with moderate intellectual disabilities and autism. On of the girls in my class had a seizure today and went home early as a result. At first break the teacher's aides were talking about it and how it was scary to see and they felt bad for her etc etc. they also mentioned that mum had said once before that she was not real vigilant to begin with in ensuring she have her medication and this teachers aide told her (of course) that it was important she always have the medication at the same time each day so she doesn't have seizures. I then added "well not only that but also if she doesn't have it regularly there is a greater chance of her having more side effects." Her response to me "well, I don't know about that because with anticonvulsants there aren't really many side effects. I then explained that I take anticonvulsants myself to which she asked "for what!" I explained that it was for Epilepsy and so she questioned my driving and how long it had been since having a seizure. I explained that it has been 10 years since having a grand mal (because that is the term she used previously) and that I only have small instances which my neurologist says may be mini seizures. She started telling me that I should not be driving at all and I said that my doctor okay end it because I have no loss of awareness or consciousness. I don't think she was happy with that at all. She was asking me about if I had petit mal seizures and I explained that I didn't and that they were like an aura but without the bigger seizure to follow. So then she says "oh, so you have the aura but not the seizure." I agreed since I couldn't explain to her that an aura is in fact a simple partial seizure and it wasn't worth the effort. She also talked about how it was unusual this girl had a seizure because they are normally nocturnal. As the conversation progressed it seemed she had a bad night and they thought that she had only woken and dressed just before the bus came to pick her up and she hadn't had time for breakfast. So I said "well that is a nocturnal seizure then." She looked at me like I was an idiot and said "what!" So I explained that a nocturnal seizure is any that happens during sleep or an hour or so of waking. I'm sure she was just generally interested and concerned but boy I felt so upset after that conversation - like I was being attacked. My neurologist is fully aware of everything that is happening with me and is sure that I am safe to drive. :(
 
Cheers to you for taking up this challenge and spreading good information about epilepsy :woot: I know this must have been stressful for you but you did it and informed one more person (a teacher no less!) who will hopefully now correct her views and those of others she meets!
 
Trinity,

Good for you! You did your best to explain E to this ignorant teacher's aide. Sounds to me she only wanted to argue with you and be right, but you stood your ground and told her the right thing to do. Isn't it a bit absurd in what those outside the E community all think they know? But when it come right down to it, they really don't know much, except the BIG one and only type of seizure--- you all know what I mean.
 
Thanks to you both for responding. I think the most shocking thing (the rest was frustrating and upsetting but not surprising) was that she actually believes (I don't think I managed to convince her otherwise) that there are not many side effects to anticonvulsants. She didn't say not many to a specific anticonvulsant just overall. I've been on phenobarbital, tegretol, lamictal and Epilim (which I'm currently on) over the years and they all have their own side effects including nausea and vomiting, tremors (I actually get these from my Epilim), tiredness, memory difficulty, liver and kidney damage, photosensitivity (with lamictal my EEG showed increased sensitivity to light and only after this did I notice amongst the side effects 'photosensitivity' in the packet so I'm not sure if that was what it meant or if it was photosensitive to sunburn etc), hyper and hypoactivity (I was like a space cadet on phenobarbital as a kid). I guess all these and more really do not count as much for her. She has a sister in law on Epilim so she's an expert. Doesn't matter that I've been taking Epilim since I was thirteen (so for 25 years) and I might have something to contribute as well. I also know that many side effects will diminish over time (such as nausea and vomiting) but it is not always the case. I put up with the tremors because Epilim stabilises my Epilepsy and I've had worse side effects so it is what is best for me.
 
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