What first triggered your epilepsy, if known? (i.e. first seizure)
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Mine is an interesting one. My first known seizure was at 14 months old and my neurologist has said my epilepsy is idiopathic (no known cause) but when my mother was pregnant with me she didn't know it for at least 4-5months. Anyway, she felt unwell but for some reason nobody suspected or tested for pregnancy and the doctor sent her for a D&C. My doctors have agreed that could possibly be the cause of my epilepsy, however there is no proof.
Blue Cat
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I put born with it just because they said the EEG indicaged Juvenile Myclonic Epilepsy, even through first seizure was at 28 after a party (yeah had LOTS of really good drinks...), second one on motorcycle out in the middle of no where at 42. Third and four in 2009 and 11 sitting around watching a movie - no aura there, just out. My hubby took really good care of me. I'm hoping this is partly menopause but who knows.
Nintendo 64! Who Knew?
I had my first seizure playing Nintendo 64. I was playing all night and then I woke up early and played some more. POOF! my hand rose as if praising the lord and smack down to the ground i went. I remember the doctor telling us about the seizure warnings on the label. I didn't read it. Also, it wasn't my Nintendo 64 I was sleeping over my friends house so I wasn't aware of a tiny white booklet with tiny black letters that said seizure warning. :dontknow:
I had my first seizure playing Nintendo 64. I was playing all night and then I woke up early and played some more. POOF! my hand rose as if praising the lord and smack down to the ground i went. I remember the doctor telling us about the seizure warnings on the label. I didn't read it. Also, it wasn't my Nintendo 64 I was sleeping over my friends house so I wasn't aware of a tiny white booklet with tiny black letters that said seizure warning. :dontknow:
msuder0583
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Brain Surgery
Had brain surgery when I was 15 for a brain tumor at Johns Hopkins, which is in my opinion the best hospital in the country. My surgeon told my parents that if I had a seizure right after surgery, it would be the only one I would ever have, but if I had any a year after the surgery or so, I would be stuck with epilepsy. Unfortunately, it was the latter. Now here I am, 27. Could never tell I had brain surgery - twice, but of course the epilepsy is apparent when I have my grand mal or tonic clonic seizures.
Had brain surgery when I was 15 for a brain tumor at Johns Hopkins, which is in my opinion the best hospital in the country. My surgeon told my parents that if I had a seizure right after surgery, it would be the only one I would ever have, but if I had any a year after the surgery or so, I would be stuck with epilepsy. Unfortunately, it was the latter. Now here I am, 27. Could never tell I had brain surgery - twice, but of course the epilepsy is apparent when I have my grand mal or tonic clonic seizures.
Lolzkitten
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They said they couldn't decide why I developed epilepsy. My bets are:
1. Always been active and clutsy so I've had quite a few concussions. So probably bound to happen at some point. But about half a year before my first seizure I had a horse accident and slurred and stuttered (I always want to say and write sturred and sluttered! drives me crazy, lol) for five months after. Three months after that accident I somehow magically hit my head on the back of a chair and got another. Plus other minor head injuries I didn't bother to remember (mostly from martial arts.)
2. Severe emotional distress. Awful, traumatic event a month or two before my epilepsy began. (And while still recovering from horse accident.)
3. This was all while I was still developing, not good timing.
1. Always been active and clutsy so I've had quite a few concussions. So probably bound to happen at some point. But about half a year before my first seizure I had a horse accident and slurred and stuttered (I always want to say and write sturred and sluttered! drives me crazy, lol) for five months after. Three months after that accident I somehow magically hit my head on the back of a chair and got another. Plus other minor head injuries I didn't bother to remember (mostly from martial arts.)
2. Severe emotional distress. Awful, traumatic event a month or two before my epilepsy began. (And while still recovering from horse accident.)
3. This was all while I was still developing, not good timing.
Seizures in my sleep
I had my first seizure last August. I woke up around 7am sitting up in my bed, feeling groggy and confused with my bf staring at me and I knew something bad had happened. When I tried to speak I realized my tongue was really swollen and sore and my speech sounded funny as a result(I had bit two huge chunks out of each side). My bf told me I had what he though was a seizure, I was shaking uncontrollably for a few mins and he was really worried.
I asked a doctor friend of the family who said to see a doc when I got home(I was on holidays) and not to worry too much.
I had a 5hr flight the night before but ever since I was a baby I have gone all around the world, at least 3 or 4 flights a year including some to Australia that took 24hrs of flight time and never had a problem before with that.
I had a second seizure also in my sleep around the very start of October. I knew this because when I woke up, alone this time, again my tongue was sore and swollen, there was blood and lots of saliva on the bed about a foot below my pillow suggesting I had moved, as one would during a seizure and bit my tongue there.
I went strat to the doctor who got me 2 appointments the next week with specialists to get an EEG scan(brain wave scan) and a MRI scan (that takes pictures of your brain) as well as blood tests.
The MRI and bloods came back normal. As for the EEG I had when they made me go to sleep the brain waves had some random spikes meaning I have epilepsy. I was reffed to a specialist the next week who explain all this to me and put me on 1000mg of Keppra.
I have no idea why I have epilepsy. There is no family history what so ever, no history in my childhood, no recent injuries to my head, no meds I was already on...I was just told that sometimes people can just develop it and that it is common for this to happen in girls in their 20's, I'm 21 and a girl.
Haven't had a single seizure since then thank god..but I still worry at times
I had my first seizure last August. I woke up around 7am sitting up in my bed, feeling groggy and confused with my bf staring at me and I knew something bad had happened. When I tried to speak I realized my tongue was really swollen and sore and my speech sounded funny as a result(I had bit two huge chunks out of each side). My bf told me I had what he though was a seizure, I was shaking uncontrollably for a few mins and he was really worried.
I asked a doctor friend of the family who said to see a doc when I got home(I was on holidays) and not to worry too much.
I had a 5hr flight the night before but ever since I was a baby I have gone all around the world, at least 3 or 4 flights a year including some to Australia that took 24hrs of flight time and never had a problem before with that.
I had a second seizure also in my sleep around the very start of October. I knew this because when I woke up, alone this time, again my tongue was sore and swollen, there was blood and lots of saliva on the bed about a foot below my pillow suggesting I had moved, as one would during a seizure and bit my tongue there.
I went strat to the doctor who got me 2 appointments the next week with specialists to get an EEG scan(brain wave scan) and a MRI scan (that takes pictures of your brain) as well as blood tests.
The MRI and bloods came back normal. As for the EEG I had when they made me go to sleep the brain waves had some random spikes meaning I have epilepsy. I was reffed to a specialist the next week who explain all this to me and put me on 1000mg of Keppra.
I have no idea why I have epilepsy. There is no family history what so ever, no history in my childhood, no recent injuries to my head, no meds I was already on...I was just told that sometimes people can just develop it and that it is common for this to happen in girls in their 20's, I'm 21 and a girl.
Haven't had a single seizure since then thank god..but I still worry at times
Random's story sounds alot like mine. My first seizure, (although I wasn't sure whether or not that's what it was) happened in 1996 while napping on the couch with my 12 month old baby. I awoke on the couch to find myself "soaked" and thought my son's diaper had leaked. I felt so disoriented, exhausted and weak. I rolled off the couch and when I tried to stand I collapsed to my knees. I began to mutter a common obscenity (oh #@*$ !) and a deadening pain shot through my tongue. I stumbled into the bathroom and pulled myself up to the sink to look at myself in the mirror, both my legs had "charlie horses", I was shaking and it felt like something was pushing me back down. I opened my mouth and my tongue was so swollen it looked like it didn't fit in my mouth and it had a huge row of bloody teeth marks across the tip of it. I was bewildered and scared and I crawled back to the living room to make sure my baby was okay-he was still sleeping soundly as if nothing had happened. I grabbed the phone and called my dad because he was the only one I knew of that would be home at that hour and told him what I thought had happened, my speech real slurred. I also told my husband when he came home from work. Unlike Random, I didn't go to the doctor as I was unsure if it actually wasa seizure or not because there were no witnesses and I had never had a seizure before-I mean, who gets them in their sleep, right?
On February 25th, 2000 I was awakened by a sheriff/paramedic in my bedroom saying my name repeatedly and asking me if if I was okay. Glaring at him I tried to utter the word "WHAT!?" and had a familiar excruciating pain in my tongue causing me to whince as I had once again bitten it. Same charlie horses in my legs and weakness I felt that day in 1996. I was taken by ambulance against my will after being asked if I had done any drugs or if I had drank any alcohol, or if I was on any medications. I had stopped taking paroxatene for "depression" (which rarely helped me anyway and only seemed to make me angry instead of depressed) months before the incident and was on no other drugs, prescribed or otherwise, and did not drink at all. I was given a battery of tests-MRI, EEG, CT-scan--that turned up no tumors, lesions, bleeds, scar tissue, etc. I was given a prescription for "depakote" (which I never filled) as I had reported at the hospital that this had happened to me before.
I refused to take medication for something that I believed was just a sympton of a serious problem they had not identified and I believed that if I took the medication it would only alleviate the symptom while the "problem" continued to "grow". My refusal prompted the onset of another seizure in 2003 while, again, sleeping. By the end of 2003 I was having a seizure every other month, without failure, during menstrual cycles or within days just before or after, while sleeping. I never consulted a doctor for any of them as I knew they would only try and get me to take "the drugs"! Talk about stubborn and stupid!
I kept a sleep diary for over two years, trying to identify a link between food, sleep, mood, drink, sleep patterns, etc. to the onset of seizures, by changing everything, one thing at a time-to no avail. I was told repeatedly by my husband, "I just know I'm going to wake up one of these days and find you dead beside me! If you don't take the medicine I'm getting a divorce!". I didn't want him to leave me but why couldn't he understand I had to know! The only links I ever found for all the seizures were sleep, caffeine intake, and mentruation.
Since I had meticulously documented the dates of all the seizures I had them narrowed down to approximately 1 every 56 days . The "knowing" it was coming, just a question of "when", now was affecting my ability to sleep as I found myself in bed, staring at the ceiling at night, afraid to fall asleep, asking myself, "Am I gonna have one tonight?". After I stopped sleeping, I stopped eating, and I lost 25 lbs. in 3 months. I began having chest pains frequently at the age of 36 and I broke down and made an appointment at a cardiologist's office, and he told me if I didn't make some changes I would not be around in a year. I knew what he was talking about but I didn't share that information with him, and I had another seizure coming any day now according to my sleep diary. I made an appointment with that same neurologist that prescribed the meds that I wouldn't take so long ago, who now was asking me "what are you doing here? I can't do anything for you if you won't take the medicine." as I sat on an examining table sobbing. I had to admit to myself, out loud, that I was epileptic. Period. I requested a medication that could serve as not only an anitconvulsant but a mood stabilizer as well because I was pretty sure I am bipolar as well. My doctor explained that epilepsy could have caused the bipolar disorder but I am pretty sure that I was bipolar ALOT longer than I had been epileptic and often wonder if that caused the epilepsy. My doctor was shocked that I had already been keeping a sleep diary and that he had never had a patient who kept one without having been told to and had let it go on for so long.
I haven't had a seizure since July of 2006, but I have caused myself irrepairable brain damage in my quest to find answers. I always had a high IQ (common sense was obviously a little lacking though!) and feel that I am now "stupid". I have short term memory loss and embarrassing moments of fumbling for words, and I cannot have anything caffeinated (including chocolate ) after 5pm because it gives me a "spinning" sensation when I start to fall asleep-- and I still have no answers. But thank God it appears to be over.
I have never had the occasion to share my story with a single person who actually believed the "sudden unexplained onset of sleep seizures every other month" story, but I'm thinking now after reading Random's post, ( first seizure being in August and the next being in October, who knows how the interval between seizures would have worked out?) that she might believe. Thank you for sharing your story.
On February 25th, 2000 I was awakened by a sheriff/paramedic in my bedroom saying my name repeatedly and asking me if if I was okay. Glaring at him I tried to utter the word "WHAT!?" and had a familiar excruciating pain in my tongue causing me to whince as I had once again bitten it. Same charlie horses in my legs and weakness I felt that day in 1996. I was taken by ambulance against my will after being asked if I had done any drugs or if I had drank any alcohol, or if I was on any medications. I had stopped taking paroxatene for "depression" (which rarely helped me anyway and only seemed to make me angry instead of depressed) months before the incident and was on no other drugs, prescribed or otherwise, and did not drink at all. I was given a battery of tests-MRI, EEG, CT-scan--that turned up no tumors, lesions, bleeds, scar tissue, etc. I was given a prescription for "depakote" (which I never filled) as I had reported at the hospital that this had happened to me before.
I refused to take medication for something that I believed was just a sympton of a serious problem they had not identified and I believed that if I took the medication it would only alleviate the symptom while the "problem" continued to "grow". My refusal prompted the onset of another seizure in 2003 while, again, sleeping. By the end of 2003 I was having a seizure every other month, without failure, during menstrual cycles or within days just before or after, while sleeping. I never consulted a doctor for any of them as I knew they would only try and get me to take "the drugs"! Talk about stubborn and stupid!
I kept a sleep diary for over two years, trying to identify a link between food, sleep, mood, drink, sleep patterns, etc. to the onset of seizures, by changing everything, one thing at a time-to no avail. I was told repeatedly by my husband, "I just know I'm going to wake up one of these days and find you dead beside me! If you don't take the medicine I'm getting a divorce!". I didn't want him to leave me but why couldn't he understand I had to know! The only links I ever found for all the seizures were sleep, caffeine intake, and mentruation.
Since I had meticulously documented the dates of all the seizures I had them narrowed down to approximately 1 every 56 days . The "knowing" it was coming, just a question of "when", now was affecting my ability to sleep as I found myself in bed, staring at the ceiling at night, afraid to fall asleep, asking myself, "Am I gonna have one tonight?". After I stopped sleeping, I stopped eating, and I lost 25 lbs. in 3 months. I began having chest pains frequently at the age of 36 and I broke down and made an appointment at a cardiologist's office, and he told me if I didn't make some changes I would not be around in a year. I knew what he was talking about but I didn't share that information with him, and I had another seizure coming any day now according to my sleep diary. I made an appointment with that same neurologist that prescribed the meds that I wouldn't take so long ago, who now was asking me "what are you doing here? I can't do anything for you if you won't take the medicine." as I sat on an examining table sobbing. I had to admit to myself, out loud, that I was epileptic. Period. I requested a medication that could serve as not only an anitconvulsant but a mood stabilizer as well because I was pretty sure I am bipolar as well. My doctor explained that epilepsy could have caused the bipolar disorder but I am pretty sure that I was bipolar ALOT longer than I had been epileptic and often wonder if that caused the epilepsy. My doctor was shocked that I had already been keeping a sleep diary and that he had never had a patient who kept one without having been told to and had let it go on for so long.
I haven't had a seizure since July of 2006, but I have caused myself irrepairable brain damage in my quest to find answers. I always had a high IQ (common sense was obviously a little lacking though!) and feel that I am now "stupid". I have short term memory loss and embarrassing moments of fumbling for words, and I cannot have anything caffeinated (including chocolate
) after 5pm because it gives me a "spinning" sensation when I start to fall asleep-- and I still have no answers. But thank God it appears to be over.I have never had the occasion to share my story with a single person who actually believed the "sudden unexplained onset of sleep seizures every other month" story, but I'm thinking now after reading Random's post, ( first seizure being in August and the next being in October, who knows how the interval between seizures would have worked out?) that she might believe. Thank you for sharing your story.
I put 'born with it' because the umbilical cord was wrapped around my neck at birth and my face was blue/black. That kept me from getting enough air, so maybe 'brain damage'? The first ones I had were at 18 months old, though. My mom popped me on the butt, and that was it, I fell back. She got me to the hospital and I ended up having 10 more, I believe, after I was coded
My mom likes to tell the story of how I was given an RX to relax me for all the tests they had to run, and instead of relaxing me, it had the opposite effect. At 18 months old, I was running through the halls. The docs just had to let it wear off.
My mom likes to tell the story of how I was given an RX to relax me for all the tests they had to run, and instead of relaxing me, it had the opposite effect. At 18 months old, I was running through the halls. The docs just had to let it wear off.
kostareyna
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Altough i had car accident when i was on my bike i din't hit my head and my ct was normal.
You forget to put a very known cause especially to people with JME
Alcohol+sleep deprevation.
that's what did the trick for me
and i was 15 perfect age for jme
You forget to put a very known cause especially to people with JME
Alcohol+sleep deprevation.
that's what did the trick for me
and i was 15 perfect age for jme
stephanieholly
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I wish I knew!! If I did I would kindly ask Dr. Who if I could possibly use the tardis and go back to before it started and prevent it maybe although I know Dr Who is busy fighting the daleks so I guess for now the answer is unknown x
although I know Dr Who is busy fighting the daleks so I guess for now the answer is unknown x
I had my first seizure eleven years ago when I was 30 yrs. old. I am currently 41 yrs old. and I had a right temporal lobectomy in 2006. Since then I had two seizures. But now my seizures have been controlled with a slight increase in my current new med since the surgery. I truly don't know the medical reason why I have epilepsy. onder: Our oldest daughter was diagnosed with epilepsy when she was 7 yrs old in 1996 and I prayed constantly to take it from her.:rose: When I actually had a seizure and then she stopped seizing after I had mine.....her first neurologist had even discussed with us if she continued seizing about the option of her having the temporal lobectomy surgery, then for her to all of a sudden stop having seizures once I started having seizures for no known reason was weird! Now, I have to make sure I get plenty of sleep, keep low on stress and drink plenty of water, along with take my medication.
onder: Our oldest daughter was diagnosed with epilepsy when she was 7 yrs old in 1996 and I prayed constantly to take it from her.:rose: When I actually had a seizure and then she stopped seizing after I had mine.....her first neurologist had even discussed with us if she continued seizing about the option of her having the temporal lobectomy surgery, then for her to all of a sudden stop having seizures once I started having seizures for no known reason was weird! Now, I have to make sure I get plenty of sleep, keep low on stress and drink plenty of water, along with take my medication.