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Seizures while sleeping~
Tue, 01/25/2005 - 17:03Comments
Re: Seizures while sleeping~
Submitted by sissylyn on Sun, 2009-08-16 - 11:03
Hi there!
I posted my story under "Nocturnal Paroxysmal Dystonia" aka Frontal lobe epilepsy.
I am 35 yrs old and on 8/12/2009 woke up in the middle of the night to hubby extremely upset, said I had 2 seizures lasting about 30 seconds, entire body went stiff to a point my body arched off the bed, head back and to the side and I clucked like a chicken, they were about 3 minutes apart. I was extremely hazy, sleepy, and confused. Said I would see the Dr in the am, I am a nurse and assured hubby as long as I breathed through the seizure and aftewards I would be fine. Well on 8/14/2009 I awoke to the same thing, only Dave more upset because he said they were more violent and lasted longer and it took him longer to get me awake, and even then I kept drifting off, thought Dave was my dad and that I was back in my childhood home. I slowly came out of it to realize I had lost bladder control. I managed to get up and change, noticed my L side weak and as we laid down to argue about going to the ER, I am not sure if I drifted off to sleep or not, but another one hit and it was bad. I had 3 more in the ER, one more a grand mal as I lost bladder function, 2 while I was asleep and the grand mal just as the Dr was attempting to wake me up. I have no memory of any of it, though I was horrified when I tried to register myself at the ER, did not know the date or year, my address, my phone #, ssn, or dob. I swore Clinton was president. I was given IV Valium and the CT scan and bloodwork was negative. ER Dr said even with the valium when I slept I constantly jerked and even went rigid at times. I explained I had my entire life, family lovingly called them the "herky jerkies". He said I have "Nocturnal Paroxysmal Dystonia". I had started Mirapex for the leg cramps, started at 0.125 mg about 1 month prior to all of this, 1 week before the first seizure family DR bumped me to 0.5 mg. ER Dr said that Mirapex only makes the dystonia and movement disorders worse and very well may have pushed me into the seizures. I have an MRI with contrast tomorrow and see Neurologist Wed.
I saw family DR day after ER visit, both DR's assured me the Mirapex was out of my system and the "storm" was over. Family DR said if I take 2 weeks off work and get all work ups done and no results then we know it's the Mirapex, if I don't he contacts the county clerk and suspends my license....I can't afford that! So anyway, last night 8/16/2009 once again hubby wakes me up, he said it was a very violent one, I actually chewed on my tongue pretty good and once again wet my pants. Aggrivating! I then spent the next 2 hrs dozing off and jumping awake and my Right arm had to move, can't explain the feeling, not tingeling...just a weird sensation that insists I move my entire arm, big movements, little ones don't cut it. I know I saw 430 am. Next thing I know I wake up on the floor next to the bed and it's 10am. Hubby was up and out working on the yard at 730am. Of course, wet pants again! I am foggy this am and weak. I don't get any of this and don''t understand why it has come on so much stronger at this age in my life. All the resarch I find says that most DR's say NPD is frontal lobe epilepsy.
Thats my story, sounds alot like others. I hope my road to diagnosis is not a struggle, I don't feel this is a psychiatric or psychotic thing....I mean come on, do they think we enjoy this???? All I want is a good nights rest, have my entire life!
I worry about my hubby too, he is so worried and sleep deprived himself....I know he spends a good portion of the night watching me and is up with any little movement.
We just gotta hang in there and know in our minds and hearts we are not crazy, hope it helps to hear a similar story to your alls. Take care and lots of love and hugs! Tammy
Hi there!
I posted my story under "Nocturnal Paroxysmal Dystonia" aka Frontal lobe epilepsy.
I am 35 yrs old and on 8/12/2009 woke up in the middle of the night to hubby extremely upset, said I had 2 seizures lasting about 30 seconds, entire body went stiff to a point my body arched off the bed, head back and to the side and I clucked like a chicken, they were about 3 minutes apart. I was extremely hazy, sleepy, and confused. Said I would see the Dr in the am, I am a nurse and assured hubby as long as I breathed through the seizure and aftewards I would be fine. Well on 8/14/2009 I awoke to the same thing, only Dave more upset because he said they were more violent and lasted longer and it took him longer to get me awake, and even then I kept drifting off, thought Dave was my dad and that I was back in my childhood home. I slowly came out of it to realize I had lost bladder control. I managed to get up and change, noticed my L side weak and as we laid down to argue about going to the ER, I am not sure if I drifted off to sleep or not, but another one hit and it was bad. I had 3 more in the ER, one more a grand mal as I lost bladder function, 2 while I was asleep and the grand mal just as the Dr was attempting to wake me up. I have no memory of any of it, though I was horrified when I tried to register myself at the ER, did not know the date or year, my address, my phone #, ssn, or dob. I swore Clinton was president. I was given IV Valium and the CT scan and bloodwork was negative. ER Dr said even with the valium when I slept I constantly jerked and even went rigid at times. I explained I had my entire life, family lovingly called them the "herky jerkies". He said I have "Nocturnal Paroxysmal Dystonia". I had started Mirapex for the leg cramps, started at 0.125 mg about 1 month prior to all of this, 1 week before the first seizure family DR bumped me to 0.5 mg. ER Dr said that Mirapex only makes the dystonia and movement disorders worse and very well may have pushed me into the seizures. I have an MRI with contrast tomorrow and see Neurologist Wed.
I saw family DR day after ER visit, both DR's assured me the Mirapex was out of my system and the "storm" was over. Family DR said if I take 2 weeks off work and get all work ups done and no results then we know it's the Mirapex, if I don't he contacts the county clerk and suspends my license....I can't afford that! So anyway, last night 8/16/2009 once again hubby wakes me up, he said it was a very violent one, I actually chewed on my tongue pretty good and once again wet my pants. Aggrivating! I then spent the next 2 hrs dozing off and jumping awake and my Right arm had to move, can't explain the feeling, not tingeling...just a weird sensation that insists I move my entire arm, big movements, little ones don't cut it. I know I saw 430 am. Next thing I know I wake up on the floor next to the bed and it's 10am. Hubby was up and out working on the yard at 730am. Of course, wet pants again! I am foggy this am and weak. I don't get any of this and don''t understand why it has come on so much stronger at this age in my life. All the resarch I find says that most DR's say NPD is frontal lobe epilepsy.
Thats my story, sounds alot like others. I hope my road to diagnosis is not a struggle, I don't feel this is a psychiatric or psychotic thing....I mean come on, do they think we enjoy this???? All I want is a good nights rest, have my entire life!
I worry about my hubby too, he is so worried and sleep deprived himself....I know he spends a good portion of the night watching me and is up with any little movement.
We just gotta hang in there and know in our minds and hearts we are not crazy, hope it helps to hear a similar story to your alls. Take care and lots of love and hugs! Tammy
Re: Seizures while sleeping~
Submitted by siblack on Sun, 2010-03-21 - 14:56
Reading this is like reading my life story these past 8 years. I only have seizures while sleeping, NOW and am currently on Phenytek (Dilantin) and Keppra. I say now, because I have had seizures since I was 10 1/2 and I am now 34. I barely remember life without Epilepsy (I work hard to remember though), but I was lucky as most of my childhood consisted of seizures I didn't remember actually happening (day dreaming, aware of what was happening but was paralyzed and couldn't talk). I have tried almost every medicine in the book (phenobarbitol, tegretol, felbatol, dilantin, keppra) and had just about ever type of seizure and put my parents through hell and back with seizures on top of my very bold, strongly opinionated, independent personality. My seizures actually differed with each medicine. My brothers still can't handle it.
I didn't have a grand mal or a seizure while sleeping until I started taking Dilantin in college. Didn't realize how blessed I was until then. I only know what these seizures were/are like because others tell me what happened or I see the evidence around me (bodily scars, knocked over items in the room, etc.). I started kicking myself out of bed, the top bunk once (stopped doing bunk beds after that), went to the hospital for a busted/bloody lip, gave myself a black eye after bouncing out of bed and hitting my eye on my luggage. I was/am really violent. I did my best to stay on my medicine to prevent having seizures, but I was stubborn in my teens and felt invincible in my 20s (drank alcohol an everything) and took a "you only live once" fearless attitude at one point. Amazed I made it to 34.
Over these many years and many seizures with no explanation (MRI, CT scans, EKGs, sleep EEGs), I have only shared this part of my life with my family who has been there since the beginning, close friends and bed fellows. I guess I am mainly writing because I am frustrated no end becuase I just had a seizure in my sleep Friday (4 am) and woke up confused in pain, blood all on my sheets (I bite down on my tongue/grind my teeth while I sleep). This was the first time I had a seizure and woke up alone! I am still aching in placing that don't make sense (always happens), and my tongue is swollen and I can't eat anything that is spicy or takes too much chewing, plus for some reason I have a sense of pain or impending death that lingers for a while after my seizures. In the past someone has always been there or heard me fighting (grunting, fall of the bed, etc), like my parents, brother, a roommate and is with me to the confusion and mental pain subsides.
I hope my rambling is helpful to someone and certainly hope no one just completely stops taking their meds. I have been there and done that, used every excuse in the book to rebel and it hurt those I loved and who worried about me and it hurt me and put the progress my doctors and I made way back. I basically had to start from scratch when I was 23. It always came and comes back to taking my medicine like brushing my teeth or getting up in the morning for my life to be right. I am of course speaking from my own experience, but I can say that Keppra has improved my quality of life, when I take it consistently that is. Dilantin was okay (especially when I am at a healthy size and in good physical shape), but made me act out quite violently when I missed too many doses. My doctor added Keppra because I was having Aura's (deja vu) and I had a few seizures that couldn't be explained. After my neurologist added Keppra I went four years with no seizures and if it weren't for having to take medicine everyday & get blood tests done, life was almost normal. I recently had some life changes and stress effects me (going to see the doc on Monday), but overall Keppra was a plus for me and I suggest anyone with seizures or diagnosed with Epilepsy be open with those they trust and befriend a neurologist (keep looking til you find one you really like and trust with any information).
Reading this is like reading my life story these past 8 years. I only have seizures while sleeping, NOW and am currently on Phenytek (Dilantin) and Keppra. I say now, because I have had seizures since I was 10 1/2 and I am now 34. I barely remember life without Epilepsy (I work hard to remember though), but I was lucky as most of my childhood consisted of seizures I didn't remember actually happening (day dreaming, aware of what was happening but was paralyzed and couldn't talk). I have tried almost every medicine in the book (phenobarbitol, tegretol, felbatol, dilantin, keppra) and had just about ever type of seizure and put my parents through hell and back with seizures on top of my very bold, strongly opinionated, independent personality. My seizures actually differed with each medicine. My brothers still can't handle it.
I didn't have a grand mal or a seizure while sleeping until I started taking Dilantin in college. Didn't realize how blessed I was until then. I only know what these seizures were/are like because others tell me what happened or I see the evidence around me (bodily scars, knocked over items in the room, etc.). I started kicking myself out of bed, the top bunk once (stopped doing bunk beds after that), went to the hospital for a busted/bloody lip, gave myself a black eye after bouncing out of bed and hitting my eye on my luggage. I was/am really violent. I did my best to stay on my medicine to prevent having seizures, but I was stubborn in my teens and felt invincible in my 20s (drank alcohol an everything) and took a "you only live once" fearless attitude at one point. Amazed I made it to 34.
Over these many years and many seizures with no explanation (MRI, CT scans, EKGs, sleep EEGs), I have only shared this part of my life with my family who has been there since the beginning, close friends and bed fellows. I guess I am mainly writing because I am frustrated no end becuase I just had a seizure in my sleep Friday (4 am) and woke up confused in pain, blood all on my sheets (I bite down on my tongue/grind my teeth while I sleep). This was the first time I had a seizure and woke up alone! I am still aching in placing that don't make sense (always happens), and my tongue is swollen and I can't eat anything that is spicy or takes too much chewing, plus for some reason I have a sense of pain or impending death that lingers for a while after my seizures. In the past someone has always been there or heard me fighting (grunting, fall of the bed, etc), like my parents, brother, a roommate and is with me to the confusion and mental pain subsides.
I hope my rambling is helpful to someone and certainly hope no one just completely stops taking their meds. I have been there and done that, used every excuse in the book to rebel and it hurt those I loved and who worried about me and it hurt me and put the progress my doctors and I made way back. I basically had to start from scratch when I was 23. It always came and comes back to taking my medicine like brushing my teeth or getting up in the morning for my life to be right. I am of course speaking from my own experience, but I can say that Keppra has improved my quality of life, when I take it consistently that is. Dilantin was okay (especially when I am at a healthy size and in good physical shape), but made me act out quite violently when I missed too many doses. My doctor added Keppra because I was having Aura's (deja vu) and I had a few seizures that couldn't be explained. After my neurologist added Keppra I went four years with no seizures and if it weren't for having to take medicine everyday & get blood tests done, life was almost normal. I recently had some life changes and stress effects me (going to see the doc on Monday), but overall Keppra was a plus for me and I suggest anyone with seizures or diagnosed with Epilepsy be open with those they trust and befriend a neurologist (keep looking til you find one you really like and trust with any information).
Re: Seizures while sleeping~
Submitted by cubana on Sun, 2009-08-09 - 11:14
Dear JMarie: I began to have seizures while sleeping when I started going through menapause, before that my seizures were only mild, absence seizures but as my hormones changed they turned into grand mal seizures and I would become incontinent at night ( my boyfriend would change my bed ) and he put up with all this. I went on Keppra and Topamax and for the first time since as I was 19 ( I am now 59) I went four whole years without a seizure, As menapause ended things quieted down and the Keppra and Topamax really hit the nail on the head. I was almost ready to renew my driver's license when I had a mild seizure again last June so I have an appointment with an epileptologist for late August because I have a small tumor in my brain that has been monitored since I was 19 and might be acting up again. I feel fine but he will do extensive testing and perhaps recommend surgery. Anyway, I answered because you asked about Keppra and it has been good for me, by the way, generic Keppra does not work for me, I took it once and had seizures with it so I went back to the brand and if you read comments from other members you'll see that some have had the same experience so be careful. Lots lof luck and hang in there. Love, Ana.