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Hello. I'm 21. Originally a neurologist diagnosed me with epilepsy at 13 years old. I doubted the diagnosis, thinking it was a psychogenic reaction to a stressful situation at school, and convinced my parents to refuse meds. I don't remember the details of what kind of seizure they thought I had. It's kind of confusing since school staff would mistake my falling down sleep-deprived for a seizure (when I was conscious), or mistaking syncope for seizures, although they feel very distinctly different, with only one loss of consciousness in my life being at all ambiguous, but even then I was pretty sure it was syncope, which doctors later confirmed as probably right.
Also, I should say that I probably have a circadian rhythm disorder like DSPS, where basically my brain is programmed to think 5-7 a.m. is the perfect bedtime and 3-5 p.m. the perfect wake-up time, being most alert between 9 p.m. and 2 a.m. Attempts to fit into the regular school schedule resulted in being constantly sleep-deprived (somehow I ended up with a high GPA due to many teachers being lenient about attendance through high school, but midway each semester almost failing three or four classes), only somewhat catching up on weekends, and missing lots of school because if my parents had dragged me into my class I would shortly start sleeping.
And I've had that problem while consuming no coffee, tea, soda, or chocolate for months on end, meanwhile completely avoiding artificial light after dark, using only candlelight if I needed to go to the bathroom for instance, restricting mealtimes and other rituals only to fixed times, exercising a lot in the morning/early afternoon but not at all within eight hours of bedtime, eating smaller meals throughout instead of large meals, etc. So I kind of roll my eyes by now when doctors list all the sleep hygiene stuff, as if I hadn't thought to look it up before complaining (and much of it is just common sense).
Anywho, since I started levetiracetam a few months ago (up to 500 mg 2x daily), I noticed some things. Things which I hadn't thought of as seizure-related, but just as normal, diminished greatly in frequency. I used to wake up, with my right leg and hand muscles shaking (sometimes starting in my finger, then going on to spread to my arms).
Also, I've been rather sleep-deprived the last two weeks, and within a couple of days, the sheet that wraps tautly around my mattress went unraveled to my waist level from the top down, a mere two days after I had made the bed.
Also, that day I awoke in the middle of the night feeling like I had a full bladder and a sharp pain in my back, a crampy feeling like the dysmenorrhea I had a week every month prior to BC treatment, so went up to urinate, but I was soaked through to my pants. After going back to sleep and waking up (a total of about 11 hours), my right leg still felt tingly in the foot and it hurt a lot to walk, every time I put weight on my right foot, I had terrible back pain and leg pain and trouble still woaking. It was bad like when I fell down a bunch of steps and took weeks to be able to walk normally, but that was two years ago.
So since I figured that was a seizure (I had never been aware of sleep seizures - I awoke with a bitten tongue or mouth side, but I attribute it to the acid reflux making my skin soft and peeling, which seems to be the case since when I avoid triggering food and eat smaller meals with about four hours between my last meal and bedtime, it happens pretty rarely).
I wondered: I frequently wake up with my legs straight up in the air, or bent at a 90 degree angle at the knees, not to mention the blankets that end up on the floor and the sheet that gets pulled up while asleep. Sometimes I wake up gasping and with a high pulse, but I attribute that to anxiety - perhaps wrongly? Also, my parents would often note when I was younger hearing me laughing in my sleep, or even singing - I figure my mom probably misinterpreted laughter for singing in those instances, though, but could that be part of seizures?
I've been trying to schedule an appointment, but it's difficult. For one, I don't have a consistent schedule. My sleeping times seem to keep moving up, until the day and night are reversed for me, and back again. That wasn't the situation until I was about 16 and a half, even though I've been a night owl since I was an infant.
I keep failing out of school within a few weeks, even though I have an IQ in the genius range and was teaching myself calculus at age 10 and calculus-based physics at age 13, wrote at a college level by age 12. my SAT was around 2000/2400, and the thing is, I'm starting over again at a community college, but they have a really strict attendance policy (you can't miss more than 2 days or something), and I am dependent totally on financial aid, so even though I could ace these classes without attending anything but the exams and labs, I have to keep withdrawing.
It sucks, because I'd like to be a physicist, as I dreamt since I was a little girl. When I start out again for the first year, most of my friends my age will be graduating with bachelor's degrees.
So I really don't know how to present everything so the doctors are less inclined to ignore a sleep disorder in favor of epilepsy or vice versa, or thinking I have neither but instead a psychiatric disorder. I see a psychiatrist who clearly thinks I have OCD or a bipolar spectrum disorder. I have lots of trouble with daily living, but mainly because I am very fatigued, and when I am alert, it's often a time I can't do the thing I need to (because local stores are closed and I can't drive).
Oh, I'm autistic BTW. But while I have trouble doing basic things like laundry, cooking, and picking up after myself, it wasn't always this way. When I kept my own sleep hours, during summers as a teenager and after missing several consecutive weeks of college classes, giving up because it's clear I can't recover by that time, I have been extremely productive. My dorm mates would think I was an excellent cook and I was able to be economical with ingredients to get high quality ingredients and stretch them out, cleaning a lot, and cooking at odd hours (my dorm mates also thought I was stoned a lot even though I didn't do any illegal drugs).
The problem is, that since I know my sleep problems are incompatible with school or work schedules, I can't just give in to them, get good rest regularly, and be very productive artistically. I could probably get things sold as a writer and be successful that way if I gave in to it totally, but I have the conundrum that I'm on disability, not to mention that whole wanting to do physics research thing. So I'd feel like a parasite if I deliberately chose to live in such a way that I couldn't get/keep a job.
But here's where this relates to seizures - when I'm sleep-deprived, I get more seizures. And in order to maintain this semi-normal schedule (AKA waking up between 11 a.m. and 1 p.m. daily, going to sleep around 3 or 4 a.m.) if I don't get to sleep in time, I have to keep myself awake until the next time I'm "allowed" to sleep, or else I'll just go to sleep later, wake up later, and the whole thing perpetuates itself.
So in order to try to fit into a school/work schedule, I'm constantly sleep-deprived, seizure-prone, and I'm still not able to be productive at a job or school, but also I'm sleep-deprived enough that I accomplish hardly anything, even for hobbies. I'm so preoccupied trying to get the kitchen sanitary or getting food or bathing, I am exhausted by the time I get to the recreational stuff.
But the thing is, whenever doctors ask me to describe symptoms, I am at a loss. I either say nothing, or start babbling about something tangential. I'm really bad at describing sensory experiences unless I've rehearsed it a lot. So a question I'm unprepared for (like when the last seizure was) can leave me unable to say anything. I can be very eloquent, but it's better for abstract things.
It's difficult to verbalize. I don't even know the characteristics of seizures really, besides the obvious ones. I had no idea what a nocturnal seizure would look like, and was sure I had never experienced one, but if these characteristics are characteristic of seizures nocturnal, then I've actually experienced a lot!
I've had two EEGs. First one not sleep-deprived, it was normal. I had another one, which was "sleep-deprived" but I was fully alert (despite no caffeine or other drugs!) the whole time, since to my mind's schedule, it was more like the middle of the day. It's like my alert time is longer than most people's, but I still require the same amount of sleep per day, which is really not conducive to functioning in society.
Also, I don't know how I would schedule an EEG (they want to do another one) to make it likely to fall asleep. By the amount of days awake I could ensure that I would be sleepy enough to fall asleep within an hour, it would be pretty likely I miscalculated slightly and would fall asleep before I could catch the bus.
Also, when I withdrew from school again, the health office leader person seemed to think (and explicitly made it clear) that she thought it was a psychosomatic problem. People think that a lot due to the sleep disorder component, and I believed it a long time myself since junior high was fairly hellish.
But seriously, I have no reason why this would be advantageous in any way. I can't even function recreationally, and things have actually worsened since I quit school (change of seasons, I presume). I always dreamt of having the free time to study whatever I wanted, whenever I wanted. I've had that opportunity for about two years. I still haven't been able to do my hobbies even once a month. I understand no more physics or math than I did eight years ago. WTH? I have nothing to gain from REM sleep intruding during class (I was at a lecture shortly before withdrawing where I would switch back and forth between my professor talking about the uncertainty principle to hypnagogically hallucinating her taking her clothes off, then back to Planck's constant, then there's a squirrel staring at me and running in the room, then etc. and collapsed a few times during class - not seizures, I was aware, just sleep-deprived).
--I wanted to add, that the EEGs were normal, but also I had no outward signs of a seizure during the test. Just normal, no odd events physically manifesting. So there's no evidence for pseudoseizures.
--Also, the recent incident where I wet myself and my leg muscles were very cramped, occurred the day before I started bleeding (but not ovulating; the BC prevents that). It was unusual since it was in the middle of the week, a couple days after adding a new patch and there's still another patch until I take the break for the officially scheduled break. Which never happened before but it's supposed to be normal since I've only been using it about three months, but maybe hormone fluctuations are contributing - it used to be I had more seizure type problems just prior to menstruation.
Also, I should say that I probably have a circadian rhythm disorder like DSPS, where basically my brain is programmed to think 5-7 a.m. is the perfect bedtime and 3-5 p.m. the perfect wake-up time, being most alert between 9 p.m. and 2 a.m. Attempts to fit into the regular school schedule resulted in being constantly sleep-deprived (somehow I ended up with a high GPA due to many teachers being lenient about attendance through high school, but midway each semester almost failing three or four classes), only somewhat catching up on weekends, and missing lots of school because if my parents had dragged me into my class I would shortly start sleeping.
And I've had that problem while consuming no coffee, tea, soda, or chocolate for months on end, meanwhile completely avoiding artificial light after dark, using only candlelight if I needed to go to the bathroom for instance, restricting mealtimes and other rituals only to fixed times, exercising a lot in the morning/early afternoon but not at all within eight hours of bedtime, eating smaller meals throughout instead of large meals, etc. So I kind of roll my eyes by now when doctors list all the sleep hygiene stuff, as if I hadn't thought to look it up before complaining (and much of it is just common sense).
Anywho, since I started levetiracetam a few months ago (up to 500 mg 2x daily), I noticed some things. Things which I hadn't thought of as seizure-related, but just as normal, diminished greatly in frequency. I used to wake up, with my right leg and hand muscles shaking (sometimes starting in my finger, then going on to spread to my arms).
Also, I've been rather sleep-deprived the last two weeks, and within a couple of days, the sheet that wraps tautly around my mattress went unraveled to my waist level from the top down, a mere two days after I had made the bed.
Also, that day I awoke in the middle of the night feeling like I had a full bladder and a sharp pain in my back, a crampy feeling like the dysmenorrhea I had a week every month prior to BC treatment, so went up to urinate, but I was soaked through to my pants. After going back to sleep and waking up (a total of about 11 hours), my right leg still felt tingly in the foot and it hurt a lot to walk, every time I put weight on my right foot, I had terrible back pain and leg pain and trouble still woaking. It was bad like when I fell down a bunch of steps and took weeks to be able to walk normally, but that was two years ago.
So since I figured that was a seizure (I had never been aware of sleep seizures - I awoke with a bitten tongue or mouth side, but I attribute it to the acid reflux making my skin soft and peeling, which seems to be the case since when I avoid triggering food and eat smaller meals with about four hours between my last meal and bedtime, it happens pretty rarely).
I wondered: I frequently wake up with my legs straight up in the air, or bent at a 90 degree angle at the knees, not to mention the blankets that end up on the floor and the sheet that gets pulled up while asleep. Sometimes I wake up gasping and with a high pulse, but I attribute that to anxiety - perhaps wrongly? Also, my parents would often note when I was younger hearing me laughing in my sleep, or even singing - I figure my mom probably misinterpreted laughter for singing in those instances, though, but could that be part of seizures?
I've been trying to schedule an appointment, but it's difficult. For one, I don't have a consistent schedule. My sleeping times seem to keep moving up, until the day and night are reversed for me, and back again. That wasn't the situation until I was about 16 and a half, even though I've been a night owl since I was an infant.
I keep failing out of school within a few weeks, even though I have an IQ in the genius range and was teaching myself calculus at age 10 and calculus-based physics at age 13, wrote at a college level by age 12. my SAT was around 2000/2400, and the thing is, I'm starting over again at a community college, but they have a really strict attendance policy (you can't miss more than 2 days or something), and I am dependent totally on financial aid, so even though I could ace these classes without attending anything but the exams and labs, I have to keep withdrawing.
It sucks, because I'd like to be a physicist, as I dreamt since I was a little girl. When I start out again for the first year, most of my friends my age will be graduating with bachelor's degrees.
So I really don't know how to present everything so the doctors are less inclined to ignore a sleep disorder in favor of epilepsy or vice versa, or thinking I have neither but instead a psychiatric disorder. I see a psychiatrist who clearly thinks I have OCD or a bipolar spectrum disorder. I have lots of trouble with daily living, but mainly because I am very fatigued, and when I am alert, it's often a time I can't do the thing I need to (because local stores are closed and I can't drive).
Oh, I'm autistic BTW. But while I have trouble doing basic things like laundry, cooking, and picking up after myself, it wasn't always this way. When I kept my own sleep hours, during summers as a teenager and after missing several consecutive weeks of college classes, giving up because it's clear I can't recover by that time, I have been extremely productive. My dorm mates would think I was an excellent cook and I was able to be economical with ingredients to get high quality ingredients and stretch them out, cleaning a lot, and cooking at odd hours (my dorm mates also thought I was stoned a lot even though I didn't do any illegal drugs).
The problem is, that since I know my sleep problems are incompatible with school or work schedules, I can't just give in to them, get good rest regularly, and be very productive artistically. I could probably get things sold as a writer and be successful that way if I gave in to it totally, but I have the conundrum that I'm on disability, not to mention that whole wanting to do physics research thing. So I'd feel like a parasite if I deliberately chose to live in such a way that I couldn't get/keep a job.
But here's where this relates to seizures - when I'm sleep-deprived, I get more seizures. And in order to maintain this semi-normal schedule (AKA waking up between 11 a.m. and 1 p.m. daily, going to sleep around 3 or 4 a.m.) if I don't get to sleep in time, I have to keep myself awake until the next time I'm "allowed" to sleep, or else I'll just go to sleep later, wake up later, and the whole thing perpetuates itself.
So in order to try to fit into a school/work schedule, I'm constantly sleep-deprived, seizure-prone, and I'm still not able to be productive at a job or school, but also I'm sleep-deprived enough that I accomplish hardly anything, even for hobbies. I'm so preoccupied trying to get the kitchen sanitary or getting food or bathing, I am exhausted by the time I get to the recreational stuff.
But the thing is, whenever doctors ask me to describe symptoms, I am at a loss. I either say nothing, or start babbling about something tangential. I'm really bad at describing sensory experiences unless I've rehearsed it a lot. So a question I'm unprepared for (like when the last seizure was) can leave me unable to say anything. I can be very eloquent, but it's better for abstract things.
It's difficult to verbalize. I don't even know the characteristics of seizures really, besides the obvious ones. I had no idea what a nocturnal seizure would look like, and was sure I had never experienced one, but if these characteristics are characteristic of seizures nocturnal, then I've actually experienced a lot!
I've had two EEGs. First one not sleep-deprived, it was normal. I had another one, which was "sleep-deprived" but I was fully alert (despite no caffeine or other drugs!) the whole time, since to my mind's schedule, it was more like the middle of the day. It's like my alert time is longer than most people's, but I still require the same amount of sleep per day, which is really not conducive to functioning in society.
Also, I don't know how I would schedule an EEG (they want to do another one) to make it likely to fall asleep. By the amount of days awake I could ensure that I would be sleepy enough to fall asleep within an hour, it would be pretty likely I miscalculated slightly and would fall asleep before I could catch the bus.
Also, when I withdrew from school again, the health office leader person seemed to think (and explicitly made it clear) that she thought it was a psychosomatic problem. People think that a lot due to the sleep disorder component, and I believed it a long time myself since junior high was fairly hellish.
But seriously, I have no reason why this would be advantageous in any way. I can't even function recreationally, and things have actually worsened since I quit school (change of seasons, I presume). I always dreamt of having the free time to study whatever I wanted, whenever I wanted. I've had that opportunity for about two years. I still haven't been able to do my hobbies even once a month. I understand no more physics or math than I did eight years ago. WTH? I have nothing to gain from REM sleep intruding during class (I was at a lecture shortly before withdrawing where I would switch back and forth between my professor talking about the uncertainty principle to hypnagogically hallucinating her taking her clothes off, then back to Planck's constant, then there's a squirrel staring at me and running in the room, then etc. and collapsed a few times during class - not seizures, I was aware, just sleep-deprived).
--I wanted to add, that the EEGs were normal, but also I had no outward signs of a seizure during the test. Just normal, no odd events physically manifesting. So there's no evidence for pseudoseizures.
--Also, the recent incident where I wet myself and my leg muscles were very cramped, occurred the day before I started bleeding (but not ovulating; the BC prevents that). It was unusual since it was in the middle of the week, a couple days after adding a new patch and there's still another patch until I take the break for the officially scheduled break. Which never happened before but it's supposed to be normal since I've only been using it about three months, but maybe hormone fluctuations are contributing - it used to be I had more seizure type problems just prior to menstruation.
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