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Thread: Epilepsy

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    Reason vs Being ragashree's Avatar
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    Default Epilepsy

    Epilepsy is a freqently maligned and misunderstood neurological condition, which often in the present day causes sufferers to be marginalised and stigmatised. However, it has a long and complex historical association with myths, legend, religious faith, and the development of human thought.

    This thread is to share personal experiences with the condition (whether you're a sufferer yourself or have ever encountered someone who is), ask and have answered any questions you have about it, and generally dispel popular myths and increase understanding of the condition.

    Fire away.
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    Senior Member prplchknz's Avatar
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    dude, I feel bad and want to respond, but I have no experience with epilepsy. someone else make this thread go off so I can lurk and learn. please.
    In no likes experiment.

    that is all

    i dunno what else to say so

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    Senior Member durentu's Avatar
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    I'm curious what it feels like to have an epileptic episode via some sort of narrative.
    "People often say that this or that person has not yet found himself. But the self is not something one finds; it is something one creates." - Thomas Szasz

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    Reason vs Being ragashree's Avatar
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    Quote Originally Posted by prplchknz View Post
    dude, I feel bad and want to respond, but I have no experience with epilepsy. someone else make this thread go off so I can lurk and learn. please.
    Well, as I may not have made sufficiently clear in my op, it's also a thread to ask any questions you may have about the condition. I'm seeing the purpose of the thread as being mainly educational and informative at the moment, with some potential for that education being gained by sharing personal experiences of the condition (either yours or those you've witnessed). It depends how it goes and what people post really.
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    Pose! Salt n' pepper's Avatar
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    Feels like being inside a thick bubble. Nothing can really penetrate it and you can't communicate properly. Kind of like being in one of these dreams where you try to scream or run, but can't seem to "take off". Sound, visuals and movement - it's all very distorted. And it takes an enormous amount of effort, for what looks like nothing from outside of this bubble.

    That's my experience. I had a pretty bad episode, lasted about 20 min, I think. I have no idea, I was pretty much out. My parents told me, many years later.

    Question: After your first episode, did you start taking medication? Did the doctors tell you WHY this happened in the first place? And what effects it has on the brain function?

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    Reason vs Being ragashree's Avatar
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    Quote Originally Posted by Salt n' pepper View Post
    Feels like being inside a thick bubble. Nothing can really penetrate it and you can't communicate properly. Kind of like being in one of these dreams where you try to scream or run, but can't seem to "take off". Sound, visuals and movement - it's all very distorted. And it takes an enormous amount of effort, for what looks like nothing from outside of this bubble.

    That's my experience. I had a pretty bad episode, lasted about 20 min, I think. I have no idea, I was pretty much out. My parents told me, many years later.

    Question: After your first episode, did you start taking medication? Did the doctors tell you WHY this happened in the first place? And what effects it has on the brain function?
    Was this when you were a child? Have you had further recurrences of any kind since? Did you, particularly if you were a child at the time, get medicated for just this one event? This sounds like some kind of simple partial seizure leading into a complex partial and with a lot of sensory components. Probably mainly Temporal lobe based. Presumably not a grand mal seizure from what you're saying. I'm wondering when it happened because children generally have a lower seizure threshold than adults, but often they seem to grow out of it as they get older, especially if it was not a regular occurence when young. Sometimes doctors seem a little too eager to prescribe epillepsy medication for children without really making a firm diagnosis of the condition by ruling out other potential causes for the seizure and establishing whether a recurrence is likely.

    I'll think about your question; the answer is necessarily a bit complicated
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    Quote Originally Posted by ragashree View Post
    Was this when you were a child? Have you had further recurrences of any kind since? Did you, particularly if you were a child at the time, get medicated for just this one event? This sounds like some kind of simple partial seizure leading into a complex partial and with a lot of sensory components. Probably mainly Temporal lobe based. Presumably not a grand mal seizure from what you're saying. I'm wondering when it happened because children generally have a lower seizure threshold than adults, but often they seem to grow out of it as they get older, especially if it was not a regular occurence when young. Sometimes doctors seem a little too eager to prescribe epillepsy medication for children without really making a firm diagnosis of the condition by ruling out other potential causes for the seizure and establishing whether a recurrence is likely.

    I'll think about your question; the answer is necessarily a bit complicated
    I was about 11, I think. 12 maybe. No, just had that one episode, that one time. Because it was such a heavy one, the doctors thought I should go on medication immediately, but my parents refused. Well, after careful consideration, they refused, due to all the side effects of such medication. And on a young child who's brain is still developing and such, they wanted to wait to see if I would have another one, and then they would consider medication. Luckily, that never happened.

    I think my parents told me it was a grand mad seizure. I know I went one several check-ups, with the electrodes attached to my head. A lot of them. And the reason why I think it was a grand mal, besides the fact that my parents told me, is because they also told me I was seizing so bad I almost fell out of the bed, and I kept seizing after we got into the car to go to the hospital. So it was pretty intense, and long. I don't know, doesn't really matter, I'm just glad it happened in bed and not somewhere else.

    Yes, doctors are eager to give away medication like candy. But they also told my parents, like you said, that some children can suffer these seizures one or three times in their young childhood. And if they don't continue, they'll grow out of it. And they also said that usually, the ones that get the random one or three seizures, those seizures are often worse than the ones that get them regularly and get medicated. I think 1 out of 10 children will sometime get this during their childhood.

    I don't know if you mentioned this in the OP, but do you have epilepsy?

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    Reason vs Being ragashree's Avatar
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    Quote Originally Posted by Salt n' pepper View Post
    I was about 11, I think. 12 maybe. No, just had that one episode, that one time. Because it was such a heavy one, the doctors thought I should go on medication immediately, but my parents refused. Well, after careful consideration, they refused, due to all the side effects of such medication. And on a young child who's brain is still developing and such, they wanted to wait to see if I would have another one, and then they would consider medication. Luckily, that never happened.

    I think my parents told me it was a grand mad seizure. I know I went one several check-ups, with the electrodes attached to my head. A lot of them. And the reason why I think it was a grand mal, besides the fact that my parents told me, is because they also told me I was seizing so bad I almost fell out of the bed, and I kept seizing after we got into the car to go to the hospital. So it was pretty intense, and long. I don't know, doesn't really matter, I'm just glad it happened in bed and not somewhere else.
    Yes, from this it is sounding more like a typical grand mal seizure (the ones most people recognise and associate with the condition). It sounds like whatever triggered it started it off as a partial seizure (as you had some initial awareness) then the seizure spread and rapidly became generalised. I can understand both the doctors wanting to put you on medication and your parents wanting to be more cautious. It was quite a serious event, particularly if you had no history - that's the kind of thing that can scare everyone involved.

    However, one isolated seizure, particularly in childhood, isn't really enough for a firm diagnosis, and the drugs are indeed powerful and can have all sorts of adverse effects on cognition and development, including in many cases the potential to make an existing condition worse or triggered by drug withdrawl. It sounds like your parents looked into it, considered the options carefully, and decided to act from a rational consideration of what was likely to benefit you in the long term at that stage. Often with children (or other dependent people such as the mentally ill or handicapped) a diagnosis and subsequent medicating appears to happen far too quickly, and this is often to quell the fears of the carers about being out of control of the situation - in my view anyway. Too often emotions can really take over with this condition - given the possible, even likely adverse side-effects of the drugs I think you need to be in a position to balance the costs against the benefits in the longer term.

    Quote Originally Posted by Salt n' pepper View Post
    I don't know if you mentioned this in the OP, but do you have epilepsy?
    Yes. I suppose it was more implied than stated from what I've writen so far I've had to research the condition quite a lot to track down my own symptoms, and also been on the other side of the fence when I worked in mental disabilites care (where there are a lot of people floating around with epillepsy diagnoses and on medication for it, sometimes quite wrongly in my view). From a subjective, non-medical point of view there are many points of interest too, so I was hoping to open it up for discussion on both fronts.
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    ^^ If you want to, please tell me how you experienced your first seizure.

    I remember excatly what happened the day before of my seizure. I was with my class, we were at this public bath house. I went off on my own, exploring the deep waters. I couldn't swim and I wasn't wearing any floating devices. So, I went in, slipped and got under the water for a while. I don't think it was very long, but I remember panicking and trying to get to the surface. I managed to splash my way to the edge and grabbed it. After that I was pretty chocked, nobody saw, and I didn't tell anyone.

    That morning I had my seizure. I have no idea if that caused the seizure, if I was gonna have one anyway or it was just in the cards for me and the pool accident just triggered it. Weird.

    Don't you think it's worth being medicated, considering what could happen if you're not and you get a seizure? It's a big risk. I'm just asking, it's not my personal view that one should be medicated after having one seizure, considering the odds of it being just one isolated event.

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    Reason vs Being ragashree's Avatar
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    Quote Originally Posted by Salt n' pepper View Post
    That morning I had my seizure. I have no idea if that caused the seizure, if I was gonna have one anyway or it was just in the cards for me and the pool accident just triggered it. Weird.
    My best guess is that perhaps you don't have epilepsy as such, but that the particular way your brain is wired means that you have a lower seizure threshold than many people, and that this event pushed you over that threshold. Children typically have a lower threshold than adults anyway, in part because their brains are still developing; one way of looking at many forms of epilepsy is not so much that that person "is epileptic" as such, but that they have a much lower seizure threshold than the majority of the population, and they can therefore be triggered by relatively insignificant factors. Stress, trauma, and strong emotions generally are known and significant trigger factors for seizures in people who get them more regularly, so it wouldn't be at all surprising if a very intense and traumatic experience like the one you've described raised you above that personal threshold (particularly if you kept it bottled up inside afterwards, as the fact that you didn't tell anyone after implies). Have you ever had any experience that could be compared to it since?

    Quote Originally Posted by Salt n' pepper View Post
    Don't you think it's worth being medicated, considering what could happen if you're not and you get a seizure? It's a big risk. I'm just asking, it's not my personal view that one should be medicated after having one seizure, considering the odds of it being just one isolated event.
    I suppose it depends what the actual dangers are. To me the biggest danger with seizures is often not so much the seizure itself, but what else is likely to be going on while you're having it. There's the chance of some kind of physical injury from contact with external objects, particularly with grand mal seizures or myoclonic seizures where sudden involuntary loss of muscle control occurs. Sometimes seizures can indicate other serious conditions, though often in these cases it may be more productive to attempt to treat the underlying cause. Also, participating in activities that could be dangerous to yourself or others if a seizure suddenly develops is always going to be a potential issue for someone who has ever had a seizure event, particularly a medically idiopathic one like yours. In your case it would be a relatively minor worry; it becomes a more important issue as the personal risk of experiencing a seizure increases. This is obviously why in most jurisdictions there are quite strict rules attached to how long people must be free of daytime seizures before driving, for example. Here it's two years, I believe that in some parts of the US it's only 3 months (this probably reflects in part a greater dependence on cars over there).

    I think, however, that the actual potential for death or brain damage resulting directly from the seizure itself is far, far, lower than many people realise, and there is a tendency for concern over this to be out of all proportion to the actual danger. Evidence that seizures themselves cause measureable brain damage or loss of cognitive function shows some correlation, particularly if the seizures are frequent or long term, but it's a long way from being a necessary or even majority outcome. Anticonvulsive medications themselves are associated with with cognitive impairment, physiological damage and mood instability, besides the fact that there is no guarantee of their effectiveness and they can actually make the condition worse in some cases. This makes the issue too nuanced to be resolved simply by saying: "It's better to take the medication just to be on the safe side." Low risk of recurrences implies low need for medication, but even if the risk is higher the likely costs and benefits need to be carefully balanced.

    The most serious concern is if someone has the potential to go into the condition of continuous seizure known as status epilepticus during a grand mal seizure and stops breathing for a significant period of time. Status epilepticus - Wikipedia, the free encyclopedia Death or brain damage are possibilites when the condition occurs, though prompt and appropriate treatment has a good chance of sucess. Obviously for anyone who's known to suffer seizures there's an increased risk of status epillepticus, but this is not to predict that any sufferer, even one who has frequent grand mal seizures, actually will. It's worth noting that several of the risk factors for developing this extreme manifestation of the condition are related to the use of seizure medication itself.

    Edit: I'll try to go into some of the other questions later, as I've spent quite a bit of time on this post and it's already rather long.
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