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> Purple Day, Epilepsy Awareness
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ʟɪɴᴅs.
post Mar 26 2016, 11:09 AM
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Heda
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I'm guessing a lot of you aren't familiar with Purple Day and I have to be honest, I wasn't either until a couple of months ago. I've been wanting to make this thread for a while as I feel it's a topic that needs a lot more attention than it gets, after a bit of googling I found that March 26th is infact Epilepsy awareness day - the perfect time to make this post biggrin.gif

If you don't know what Epilepsy is, that's okay that's what this thread and purple day is all about. I've found that even if people do know what it is, they don't always understand the full extent of it. The most common belief is that it's seizures are caused by flashing lights, which is correct but there are varying levels regarding the severity of the seizures and what triggers them, seizures can be anything from spacing out, staring into space to involuntary movement of the body and things like lack of sleep, stress, missing meals, missing epilepsy medication, hormone changes, dehydration, drugs and alcohol etc can all trigger an absence/seizure.

I'm really not the best person to go into the ins and outs of seizures and the condition as a whole tbh but what I can do is link a few pages that I recommend you scan over as I feel like it's worth knowing about epilepsy as it is a more common condition than a lot of people think, I do have epilepsy myself where I take small absences and jerk at my shoulders and that's usually brought on by stress and lack of sleep for me. I deal with people not understanding my condition on a daily basis which is why raising awareness for Epilepsy is something that's close to me. I didn't want to rant about myself here as that's not what this is about but if any of you are wondering about my experience then I'm more than happy to talk a bit about it angel.gif

So I want to know, have any of you got experiences with Epilepsy, be it yourself of through people in your life? How much did you know about it before this thread and how do you feel about the level of awareness Epilepsy has currently? happy.gif

useful links:

http://www.nhs.uk/Conditions/Epilepsy/Page...troduction.aspx
http://www.nhs.uk/Livewell/Epilepsy/Pages/...eeaseizure.aspx
http://share.upmc.com/wp-content/uploads/2...lepsy_FINAL.png
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HowToPronounceMa...
post Mar 26 2016, 11:25 AM
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A lecturer of mine told the class a couple of weeks ago about her 23-year-old (I think) son getting diagnosed with a form of epilepsy recently. I have to admit, I never knew a whole lot about it apart from the fact that you can have seizures if exposed to flashing lights and it seems like a scary thing. I believe she said that at first doctors couldn't really figure out what exactly the problem was. I'm not sure he was even in an unusual environment or exposed to something unusual or anything, but he had a small seizure. The family later found out that there is a history of epilepsy in the family. She also said that there is an app that her son got for his phone, which lets a select person/people know when you are having a seizure. I guess it recognizes the movements of a seizure. She also said she had a scare when the phone fell on the ground, causing the app to send her a message and she thought he was having another seizure when he wasn't. I had never heard of such an app, and as you can see, it's obviously not 100% reliable but it seems like a good thing.

I was aware that you had what you described before as a "mild form of epilepsy". I remember being very cautious once on plug.dj when I wanted to play a hallucinogen video where you stare at a dot with moving shapes around it, then you look away and whatever you look at in your environment moves, haha. I just wasn't sure if your condition permitted you to watch something like that. I found out it was okay. So that makes it quite obvious that there's a lot of information I don't know yet about this, and perhaps some assumptions that I have made. But it's better to be safe than sorry with things like that.

I will check out those links you have posted. Thanks for making this thread Lindsey.
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Styles Bilinski
post Mar 26 2016, 11:28 AM
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Epilepsy is a topic quite close to my heart as one of my closest friends from around year 1 or year 2 through to year 11 suffered from it. I think he had it quite bad, I remember witnessing a seizure he had at school in year 5 or 6 and I think that's when I first became aware of it sad.gif. Sometimes I heard that he had a bad seizure during the night and missed school the next day I think and was told that he wouldn't be able to do stuff like learn to drive unless he went two years without a seizure, not nice at all poor lad.
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HausAlone
post Mar 26 2016, 11:38 AM
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My dog has epilepsy so I've been dealing with it for the past 5 or so years. It's a devastating thing to witness and while it's not life threatening for him yet, it has severely affected his life and all of ours. He's a little fighter though who gets through it and all we can do is love and care for him.

Some may roll their eyes at the fact I'm talking about my dog in relation to the condition but he's my best friend so I can relate.
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HowToPronounceMa...
post Mar 26 2016, 11:49 AM
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QUOTE(HausofKubrick @ Mar 26 2016, 11:38 AM) *
Some may roll their eyes at the fact I'm talking about my dog in relation to the condition but he's my best friend so I can relate.


No, don't be silly! It sounds like an awful thing to watch your loved pet go through this. There has been something wrong with my dog for a while as well where he scratches his mouth a lot, I mean it's not just normal scratching as far as I can tell, he gets down on the carpets and drags his mouth over the carpet, makes noises as he's doing this and he's obviously in a lot of discomfort because of this. Some medication helped but as soon as the treatment stopped, the problem came back. My sister thinks that the medication was wrong, the medication should've been for the actual condition (we don't even know what it is tho, the vet couldn't figure it out but she said there was no infection), not just the symptoms. So I can relate, my dog's problem may not be as serious, but it's awful watching your dog be in discomfort or pain. The idea of stuffing your pet full of medication isn't exactly appealing either, but I do think my dog needs to be treated further.
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ionderella
post Mar 26 2016, 11:51 AM
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Many of those people probably never owned a pet so they are hardly in a position to cast judgement in any way. But I don't think there are any people like that on here, at least not among the active posters.
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MerryFlynnmas
post Mar 26 2016, 11:51 AM
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My old dog had epilepsy which was due to a ladder falling on his head before we got him and also my auntie has fits from time to time so I am aware of epilepsy
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lewistgreen
post Mar 26 2016, 12:56 PM
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Working in the care industry, epilepsy is such a large part and a rather significant proportion of people with learning disabilities also have epilepsy. I've been fortunate enough to be able to develop my knowledge with the right training so I can provide the right support to those that I work with.
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Suedehead2
post Mar 26 2016, 01:43 PM
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I suffered seizures when I was very young. I had the first on my second birthday, when we were on a trip to London Zoo. Apparently my older sister, who would have been a little over 3 1/2 at the time, was terrified. My parents were rather shaken up as well as they had no idea what was happening. I ended up having to take medication until I was about nine or ten, and have been lucky enough not to have had any problems since then.
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ʟɪɴᴅs.
post Mar 26 2016, 02:16 PM
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Yea Mattias, my epilepsy was difficult to diagnose as well given that I wasn't taking full blown seizures. I was diagnosed when I was about 11 I think, I had so many tests done, including a sleep deprived EEG and one where they put flashing lights in front of my face, like you said, I'm not affected by light sensitivity but staring at flashing lights for a long time isn't pleasant for any one laugh.gif They were hoping I'd grow out of it as that's the case with a lot of kids who suffer from absences but I haven't unfortunately, I think my mum had something similar to me and stopped having absences by her teen years. It does suck because I can't drive, I think its a year I have to go absence free before I can apply for any type of license. My medication isn't as reliable as it was when I was younger, meaning that I do still take absences now and again and I'm always paranoid I'm going to take one at work and I end up hurting myself or something, especially when I'm on an early shift where I'm up at 4am for a 6am start and will be in the department myself for a few hours, so I need to go and see if there's another option because it is limiting my day to day life more now that it has done in the past. It was difficult growing up with it in school as people didn't understand it, i'd get laughed at for jerking my shoulders or flailing my arms when I took an absence as nobody knew why I was doing it and I wasn't even aware of it happening because I space out for the duration of it and didn't know why. They only last a few seconds though but that's enough for me to completely forget my train of thought which is embarrassing if it happens when I'm talking to someone. Luckily, there's only been one occasion where I was out for longer than that and it was a whole morning at primary school I think, I only know what people have told me so Cameron could maybe comment more on what I was like then since he witnessed it laugh.gif

Epilepsy in dogs common I think Bal, don't feel bad about bringing it up as I understand how scary it can be, its the whole idea of not being able to control it yourself I think. Apparently there are trained dogs who can sense when someone is going to have a seizure before it even begins to happen which is really interesting to me, being able to be warned before a seizure happens must be a relief to people who do have these dogs and suffer from major seizures.


This post has been edited by ℒ𝓲𝓷𝓭𝓼𝒆𝔂: Mar 26 2016, 02:18 PM
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Noahspike
post Mar 26 2016, 03:49 PM
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Fair play to you for making this thread and raising awareness, Lindsey. My understanding of the condition is very limited, and the only time I've come into contact with it was when I spent a week several years ago helping children with special needs learn to swim (which was pretty nerve-racking when assisting those who were prone to regular seizures), so it's definitely been worth reading about the first-hand experiences of yourself and others.

I hadn't realised until the other day though that the term 'brainstorm' is deemed offensive to people with epilepsy, and has been widely replaced with 'thought shower' (!). Surely political correctness gone too far?! unsure.gif


This post has been edited by Noahspike: Mar 26 2016, 03:57 PM
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Christmas Cherry...
post Mar 26 2016, 06:14 PM
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QUOTE(HausofKubrick @ Mar 26 2016, 11:38 AM) *
My dog has epilepsy so I've been dealing with it for the past 5 or so years. It's a devastating thing to witness and while it's not life threatening for him yet, it has severely affected his life and all of ours. He's a little fighter though who gets through it and all we can do is love and care for him.

Some may roll their eyes at the fact I'm talking about my dog in relation to the condition but he's my best friend so I can relate.


One of our dogs (who sadly passed away a few years ago) suffered from epilepsy, and one of our dogs is currently suffering from it (and sadly currently is really struggling sad.gif ). I completely understand how heartbreaking it is to watch our loved animals in pain, when my dog fits and all I can do is just stroke him and hope he comes to it is honestly terrifying. I wish all the best to your dog <3 (who is such a little cutie wub.gif ). Changing our dogs diet has really helped him survive more years than we thought he could, have you ever tried that? smile.gif

I've only ever had one run in with epilepsy with people in real life, my friend had a fit for the first time in front of me, which really terrified me as I was on crutches and had no idea what to do blink.gif After that I did a tiny bit of research into the condition, but still never really understood it fully. Talking to Lindsey, of course, I've learnt a lot more about the condition and how it can come in many different forms!
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Slade
post Mar 28 2016, 02:11 PM
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This is a really interesting thread Lindsey, I know a bit about epilepsy but I already feel far more educated about it by reading through all the responses in here. Will also take some time to check out those links.

Personally, I don't have epilepsy but I did have two epileptic fits when I was younger. My favourite show was The Power Puff Girls and it was all the lasers and flashing lights in it that triggered my first fit. Can't remember what the reasoning behind the second one was, might've been the same thing. But yeah after these two instances I've never really had a problem with it since.

QUOTE(Noahspike @ Mar 26 2016, 04:49 PM) *
I hadn't realised until the other day though that the term 'brainstorm' is deemed offensive to people with epilepsy, and has been widely replaced with 'thought shower' (!). Surely political correctness gone too far?! unsure.gif

Oh yes I was told this at school as well! And also having to say 'thought shower' instead of 'mind map' too.
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