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Thread: Epilepsy

  1. #11
    Senior Member Oeufa'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?
    That's really fascinating. My younger brother has epilepsy, and he never remembers he's had a seizure afterwards. Instead, he'll be complaining of a massive headache and we'll have to tell him, "That's because you had a seizure." He has lots of different types, from short "spaced-out" kind of ones and the more intense spasm-y ones. I wish he could tell us what he experiences, but since he never has any recollections we don't know. He was diagnosed at 5 (we think he might have had it since age 3) so we're hoping he'll grow out of it. Still, he's going on 13 now and still no sign of it diminshing....

    Op, you say people diagnosed with epilepsy are marginalised. I think you're wrong. If anything, in the past there definitely was a stigma attached to it (possessed by evil spirits and what have you) which now medical explanations etc have disproved. I think a lot of people really understand epilepsy now, or at the very least have knowledge of it.

    Question to those with epilepsy: Do you find the medication makes you slower mentally? I ask because my brother used to be rather bright as a very young child and now he has a great deal of difficulty retaining any information at all. He could spend forever learning something (like spellings for example) and not remember it at all the next day, which he finds very frustrating as he knows damn well he's learned it. He's also now on medication for ADHD so it would be that either.
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  2. #12
    Reason vs Being ragashree's Avatar
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    Quote Originally Posted by Oeufa View Post
    Op, you say people diagnosed with epilepsy are marginalised. I think you're wrong. If anything, in the past there definitely was a stigma attached to it (possessed by evil spirits and what have you) which now medical explanations etc have disproved. I think a lot of people really understand epilepsy now, or at the very least have knowledge of it.
    It's gone in phases through history, depending on place and cultural context. Sometimes it has been viewed negatively as you state, sometimes it has had very positive associations (particularly certain forms of temporal lobe epilepsy) with such things as prophecy, divine inspiration, and religious experience. (I'm not trying to make a statement about faith here, but I do think it's vital to remember that certain clusters of epilleptic symptoms are almost identical with the many extant descriptions of various religious experience, and would almost certainly be interpreted in that way today - they are thus a plausible alternative hypothesis for what was actually happening.)

    I think much of the problem these days comes from the people who are not as well-informed as yourself - who do not a have family member or close friend with epilepsy, no specific education, and perhaps miseducation about the condition, and are inclined to see it as something dangerous and scary. It also seems common for sufferers to be regarded as mentally retarded, childlike or psychologically unstable (which is not necessarily the case). Sadly there may be many more people with these kinds of beliefs about than those who are better informed.

    There are a remarkable number of people these days who still have the alarmingly misguided folk belief that people experiencing grand mal seizures need to have something forcibly wedged in their mouths to stop them swallowing their tongues (I have even met someone who had formerly worked as a paramedic who thought this ), and not a few religious believers still around who would associate the condition with posession, etc. The positive associations I mentioned earlier have largely been lost however. It's good that believers in demonic posession are probably a very small minority now (at least in the West) but they and other misguided ideas that people have do not balance out with anything positive. Epilepsy sufferers are far less likely than in previous times to be seen as evil or dangerous, it's true, but I think there is nonetheless a widespread tendency to see someone who suffers from seizures as defective, and deserving more of pity or patronisation than truly equal treatment. Yes, people are not willing to express those judgements openly too often, but I don't think that means they're not being made.

    Quote Originally Posted by Oeufa View Post
    Question to those with epilepsy: Do you find the medication makes you slower mentally? I ask because my brother used to be rather bright as a very young child and now he has a great deal of difficulty retaining any information at all. He could spend forever learning something (like spellings for example) and not remember it at all the next day, which he finds very frustrating as he knows damn well he's learned it. He's also now on medication for ADHD so it would be that either.
    This is much of the reason why I have no current intention of going on medication; these problems are common if not universal, though if he's on ADHD medication too this may indeed confuse the issue. It's even possible the effects of the different drugs reinforce each other.

    An ex of mine was diagnosed with epilepsy in her teens and was on medication for a number of years; she eventually took herself off it over concern that it was having serious psychological effects and affecting her personality, memory, and concentration. She felt that after she was off it her mental focus improved and her mood became more stable. She also did not have a grand mal seizure after going off it, though her complex partial seizures may have become more frequent.

    Several times when she was on the medication she did experience grand mal seizures, probably caused by missing doses or running out of medication. The drug she was on was probably Dilantin, which also can have long term physiological effects that are particularly serious in young women, such as hair growth and facial changes. Probably the doctor shouldn't have prescribed that particular drug when he did, but I think drug cost was a factor, as well as concern about effectively controlling future seizures after her symptoms started with a grand mal seizure out of the blue. Sadly not everyone has access to a highly skilled or specialist doctor who will prescribe exactly the right drug, or the money to keep paying for it.
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  3. #13
    Don't pet me. JAVO's Avatar
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    Salt n' pepper, I wonder if you ingested a chemical used to disinfect the water or discourage algae growth. Also, there's the possibility that your seizure was a reflex anoxic seizure.

    Good info you've posted here, ragashree.

    I spent some time working as an EEG tech in an epilepsy monitoring unit. We took patients off of their medication and sleep-deprived them to encourage a seizure to occur while they were being monitored on digital EEG with synched video. The purpose was to better understand the type and origin of the seizure or to evaluate them for possible surgery. Some of the patients I worked with had surgery to ablate the focus of the seizures in their brain. Sadly, one patient with very severe uncontrolled seizures was not a candidate for surgery, and actually died while having a seizure several months later.

    Around half of the patients we saw had episodes which were psychogenic, meaning there was no abnormal electrical activity associated with their "seizure" episodes. Remember though that these were all patients with seizures which were poorly controlled by medication. And, just because we only saw psychogenic episodes in a monitored patient, this doesn't rule out them having neurologically-caused ones. But, there were a few who were clearly malingering.

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    Senior Member Oeufa's Avatar
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    Quote Originally Posted by ragashree View Post
    An ex of mine was diagnosed with epilepsy in her teens and was on medication for a number of years; she eventually took herself off it over concern that it was having serious psychological effects and affecting her personality, memory, and concentration. She felt that after she was off it her mental focus improved and her mood became more stable. She also did not have a grand mal seizure after going off it, though her complex partial seizures may have become more frequent.

    Several times when she was on the medication she did experience grand mal seizures, probably caused by missing doses or running out of medication. The drug she was on was probably Dilantin, which also can have long term physiological effects that are particularly serious in young women, such as hair growth and facial changes. Probably the doctor shouldn't have prescribed that particular drug when he did, but I think drug cost was a factor, as well as concern about effectively controlling future seizures after her symptoms started with a grand mal seizure out of the blue. Sadly not everyone has access to a highly skilled or specialist doctor who will prescribe exactly the right drug, or the money to keep paying for it.
    I wonder if my brother would also benefit from going off medication. As I mentioned before it seems to slow his mental capacity considerably and he has severe mood swings (or at least, he did before going on the ADHD meds a few months ago). Of course, no matter how well I might argue for it my parents and my brother make the ultimate decision. I doubt they'd listen to my opinion at all, as they take the words of the medical professionals vouching for the drugs very seriously (which is fair enough; I don't have years of medical training). The medication does not prevent my brother's seizures. Instead, it controls their appearance. Every 5-6 weeks he'll have a 'cluster' of seizures (mostly grand mal) over 3 days.

    I have another question: I've heard that some people experience symptoms which alert them to the fact that a seizure is on it's way. My brother doesn't seem to have any, or if he does he hasn't recognised it and linked it to the seizures. Instead he sleeps afterwards and has a terrible headache when he wakes up. Does anyone here with epilepsy or who knows someone with it know of these trigger symptoms? How do they manifest for you?
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    Pose! Salt n' pepper's Avatar
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    That's really fascinating. My younger brother has epilepsy, and he never remembers he's had a seizure afterwards. Instead, he'll be complaining of a massive headache and we'll have to tell him, "That's because you had a seizure." He has lots of different types, from short "spaced-out" kind of ones and the more intense spasm-y ones. I wish he could tell us what he experiences, but since he never has any recollections we don't know. He was diagnosed at 5 (we think he might have had it since age 3) so we're hoping he'll grow out of it. Still, he's going on 13 now and still no sign of it diminshing....
    Wow, that's rough. At least I knew what happened. I didn't feel any pain, not in my head at least, if I remember correctly, this was a long time ago and I haven't thought about it much. But I remember just being immobile and having cramps from fighting the seizure. I remember really trying to gain some control of my body, trying to stop the spasm, and that caused some pain in my muscles, I think.

    Question to those with epilepsy: Do you find the medication makes you slower mentally? I ask because my brother used to be rather bright as a very young child and now he has a great deal of difficulty retaining any information at all. He could spend forever learning something (like spellings for example) and not remember it at all the next day, which he finds very frustrating as he knows damn well he's learned it. He's also now on medication for ADHD so it would be that either.
    That was the main reason why my parents, esp. my father, didn't want me to go on medication for epilepsy. It's a common side effect that you just kind of "slow down". And being a kid, constantly in the progess of learning new things, he didn't wanna see that happening. I don't know about ADHD medication and how it affects the brain and learning new things. But I guess it could be a combo, and that's why he's having such apparent difficulties.

  6. #16
    Reason vs Being ragashree's Avatar
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    Default As people were asking for a seizure narrative...!

    Quote Originally Posted by Oeufa View Post
    That's really fascinating. My younger brother has epilepsy, and he never remembers he's had a seizure afterwards. Instead, he'll be complaining of a massive headache and we'll have to tell him, "That's because you had a seizure." He has lots of different types, from short "spaced-out" kind of ones and the more intense spasm-y ones. I wish he could tell us what he experiences, but since he never has any recollections we don't know.
    Quote Originally Posted by durentu View Post
    I'm curious what it feels like to have an epileptic episode via some sort of narrative.
    Quote Originally Posted by Oeufa View Post
    I have another question: I've heard that some people experience symptoms which alert them to the fact that a seizure is on it's way. My brother doesn't seem to have any, or if he does he hasn't recognised it and linked it to the seizures. Instead he sleeps afterwards and has a terrible headache when he wakes up. Does anyone here with epilepsy or who knows someone with it know of these trigger symptoms? How do they manifest for you?
    I took a quick look at this thread earlier this evening and was just reading through the most recent posts, then went off to have some food while I mulled over what I wanted to say in response. Subesequent events have made me decide to address the questions quoted above instead of the issues I was originally intending to deal with; I expect you won't have too much trouble working out why

    I was having a bit of trouble concentrating while trying to think about what I was intending to say and get everything in order, and it got worse as I sat down to try to actually write. I ended up leaving it and writing something a bit more lightweight to post on another site. That got complicated as well however, and I started feeling increasingly tired, slightly shivery and numb, and like I needed to lie down somewhere warm and comfortable. Bed was convenient, so I lay down there. It was quite a struggle to keep my eyes open, and I was conscious of what can best be described as a sort of light-headed, warm fuzziness, a sort of semi-blissful detachment - I didn't really want to think about anything too complicated any more, it was just too much effort. I remembered that I needed to put the laundry to dry, and forced myself to get up to do it, which was quite difficult, as I felt lethargic and cold, all my limbs seemed heavier than usual. I flopped back down and covered myself up as soon as I'd dealt with the laundry. I was fairly sure from the way I was feeling that I was likely to get some kind of seizure, as these are fairly typical warning signs; I just didn't really know how bad or for how long. Sometimes I get a kind of numbness or very faint metallic taste that seems to be at the roof of my mouth, but not this time.

    I lay there quite a while, actually trying to focus on noting whatever sensations I was getting in order to have something worthwhile to to say later. The feelings of fuzziness and lethargy grew stronger and I had several very brief lapses into unconsciousness of no more than a couple of seconds each - I'm really not sure if they should technically be considered seizure or sleep related, though they were most likely very brief seizure type episodes leading up to the main one. After maybe 15 or 20 miinutes of lying there esentially fully conscious, but very lethargic, whilst trying to maintain full awareness of what was going on, I slipped briefly into a sleep-like seizure state, while maintaining more or less full conscious awareness, as generally happens for me. I remember feeling somewhat amused that I was indeed going to get one just as I was thinking about it - as I'm not aware of having had any episodes for the last few days at least. It is possible that it was partially induced by me reflecting on and recalling the sensations associated with it, though given that I had some fairly typical signs earlier (I believe this is commonly referred to as an aura, though I wouldn't necessarily use the term myself) I think something was likely to happen anyway. I don't always get seizures after these symptoms, and occasionally have had them without any premonition, but most of the time it's a pretty accurate indicator that something will happen.

    As regards the experience itself: It was in some respects like a very intense, speeded-up dream, a vivid stream of hallucinatory images and voices. I had enough awareness to know that they were not present but it nevertheless seemed that they were. I was more acutely conscious of the physical sensations that I was getting concurrently with the hallucinations, however, which were extremely intense and had no connection with them. I felt that all my limbs were going heavy and cold, overpowered by a spreading, tingling, numbness and passing out of my control, while at the same time being overwhelmed by a kind of white-hot, burning, extraordinarily intense emotional sensation that is extremely difficult to describe in everyday terms, less a particular definable emotion than a kind of purified distillate of the raw essence from which emotions are formed. It seemed to start at the pit of my stomach and spread through my body like fire until I was aware of little else, even while the audiovisual hallucinations were continuing, and the conscious, aware part of my mind was trying to make sense of them for future reference. At some point during this I imagined that I was still able to move my foot, but I don't think this really happened; it was probably part of the hallucinatory process.

    It would have looked to anyone observing like I was simply asleep, I suspect. My eyes were closed (I know this as the first thing I was aware of as I came round was opening them) and I'm not aware that there was any of the shaking or trembling I sometimes get, though it can be hard to be sure if there's no-one else around. Movement is not a necessary component for me, and I think it tends to occur more with the more serious ones as they become generalised. Usually if there is any associated movement it's either a shaking of the upper body or trembling, sometimes clenching, of one or both hands, the left one if only one. The whole experience was quite short, if very intense while it lasted. I don't think it was more than 30 seconds or so, and I retained more or less full self-awareness throughout, which puts me in a fairly good position to judge. I think I made a sort of involuntary groan as I came out of it and opened my eyes.

    The main things I was aware of then was that I was sweating, feeling a little disoriented (which only lasted a few seconds until I was fully conscious), and my heart was racing, though not as much as it sometimes is at that stage. I was feeling rather jittery, what some people would describe as a "butterflies" feeling in my stomach, and perhaps had a slight tremor (this could be due to the fact that my pulse was racing though).

    I was feeling able to get up and get back to what I was doing within a minute or two, and it really didn't take me that long to feel back to normal, if a bit shaky still, and quite alert again, as will probably be evinced by the fact that I'm now writing this post a couple of hours later, which I hope is an at least somewhat lucid description of a complex and unfamilar experience. I've been feeling wide awake and reasonably alert ever since, which suggests to me that the extreme tiredness was caused by the need to have the seizure, as I didn't actually sleep when I lay down. If it had been a more serious event, or one that took place while I was already sleeping, I would probably have needed to sleep afterwards, perhaps been very tired and slept for longer than usual.

    I hope this description has been interesting and useful to those who are curious about the subjective experience of having a seizure and the process surrounding it.

    I need to qualify my narrative on several points though: this is a fairly typical episode for a particular tpye of mild to moderate seizure that I often get, but I do also several other kinds, some very mild and some more serious, more intense and longer lasting. This is a common manifestation, however, maybe the most frequent single type. Also, there are many types of epilepsy, and I only suffer from one main subtype as far as I'm aware. The symptoms are most consistent with a nocturnal form of Temporal Lobe Epilepsy (TLE) with a focal point probably in the right temporal lobe of the brain, causing simple and complex partial seizures which can spead to become more serious secondary generalised seizures. I'm reasonably sure I've never had a true grand mal seizure, though that might depend on how exactly that is being classified. Several individual features of my own condition are fairly rare and the combination even more so; probably I'd be of great interest to an epilepsy researcher if I wanted to offer myself as a guinea pig because of this, but at the moment I wasn't planning to do so
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