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    Old 03-03-2004, 05:26 AM   #1
    Kodo
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    Seizures while sleeping?

    Hello,

    Just wondering if anyone else has events while sleeping that are like mine. I have events that wake me up during the night, sometimes breathing hard, but usually just a damp shirt (sometimes just the collar). The event can occur several times a night, or go several days without occuring. The seizures can leave slight marks on my tongue, drewl on my pillow case, usually no headache, and my cat will be still sleeping on the bed so I guess they are not too violent.

    During a three day stay at a sleep clinic nothing occurred. A day or so later it occurred again. My neuro seems to not have ideas, so it would be nice to hear any comments or suggestions from HealthBoard members. I'm starting to value private opinions and suggestions here more than my doctor.

    Best wishes for all,

    Kodo

    Last edited by Kodo; 03-06-2004 at 08:55 AM.

     
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    Old 03-03-2004, 09:36 AM   #2
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    Re: Seizures while sleeping?

    I have had seizures durring my sleep. Some grand mals and some minor ones. Either way I know I have had one because they wake me up afterward. The minor ones I have no marks or signs of a siezure other than I get an aura before my siezures (pressure in head and a funny smell) that lets me know I am going to have a seizure. When I have grand malls I bite through my tounge and have a bad headache afterwards.

     
    Old 03-04-2004, 09:04 AM   #3
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    Re: Seizures while sleeping?

    What else do you notice when you wake up. The damp shirt or color, to me, sounds like night sweats.

    My son seizes in his sleep. He can have full convulsive seizures that are obvious, but can also have some that remain simple partial. (no outward signs for these) When he wakes up he will be very clumsy, angry, disoriented, have an unusually hard time waking up. (Often he will go back to sleep if he has a chance). His speech is slurred with the bigger ones, sometimes he cannot speak at all, only grunt. His thinking is very slow, he will say he feels fuzzy headed and not right. He can have tingling in one hand, sometimes enuresis.....

    Hope this helps...
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    Old 03-21-2004, 09:52 PM   #4
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    Exclamation Re: Seizures while sleeping?

    Quote:
    Originally Posted by kayakmom
    What else do you notice when you wake up. The damp shirt or color, to me, sounds like night sweats.

    My son seizes in his sleep. He can have full convulsive seizures that are obvious, but can also have some that remain simple partial. (no outward signs for these) When he wakes up he will be very clumsy, angry, disoriented, have an unusually hard time waking up. (Often he will go back to sleep if he has a chance). His speech is slurred with the bigger ones, sometimes he cannot speak at all, only grunt. His thinking is very slow, he will say he feels fuzzy headed and not right. He can have tingling in one hand, sometimes enuresis.....

    Hope this helps...
    Hi-
    I'm new to this. I was surfing and came across this. I am so relieved to know that others are experiencing sleep seizures. All of the doctors that we have come in contact with had little to no knowledge of this. Our child was misdiagnosed with reflux as a younger child. Our child is now 8 and although he is now taking Neurontin and Dilantin, he continues to suffer from sleep seizures numerous times a week. Our child has tried numerous meds, one of which was phenobarbital, and nothing seems to rid this disorder. We were initially told that our child would out grow it, but this is not so. Our child has the same symptoms as the Kayakmom described. By the way Kayakmom, is your child also having some difficulty with cognitive learning??? What meds is your child taking??? Are they working???? What are the side effects that you have noticed???? Our child is now having difficulty speaking clearly,even when he is not seizing!!!! By the way, our child only has seizures when he is asleep, no other time.

    Thanks for eliminating my "alone" feeling!!!!!!!!
    Lilzmom

    Last edited by lilz mom; 03-21-2004 at 09:56 PM.

     
    Old 03-22-2004, 02:38 AM   #5
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    Re: Seizures while sleeping?

    Quote:
    Originally Posted by lilz mom
    Hi-
    I'm new to this. I was surfing and came across this. I am so relieved to know that others are experiencing sleep seizures. All of the doctors that we have come in contact with had little to no knowledge of this. Our child was misdiagnosed with reflux as a younger child. Our child is now 8 and although he is now taking Neurontin and Dilantin, he continues to suffer from sleep seizures numerous times a week. Our child has tried numerous meds, one of which was phenobarbital, and nothing seems to rid this disorder. We were initially told that our child would out grow it, but this is not so. Our child has the same symptoms as the Kayakmom described. By the way Kayakmom, is your child also having some difficulty with cognitive learning??? What meds is your child taking??? Are they working???? What are the side effects that you have noticed???? Our child is now having difficulty speaking clearly,even when he is not seizing!!!! By the way, our child only has seizures when he is asleep, no other time.

    Thanks for eliminating my "alone" feeling!!!!!!!!
    Lilzmom



    Lilzmom, I am so sorry that your child has come down this road, but so glad she is on the way to proper care!!! My son has been on many medications, was never controlled by any of them. He is currently off medications and still suffering from seizures. When he was sent to an epileptologist for testing to see if he is a surgery candidate, he had a misdiagnosis that has sent us into limbo. After months of fighting our own neurologist we are finally getting to one who knows more and will not keep him unmedicated I hope.


    Yes, there has always been a cognitive problem with meds for my son. He had undiagnosed learning disabilities, even before epilepsy. The meds made his thinking slow, hindered comprehension, made him tired and cranky at times. They also did not totally controll his seizures. WHile that is very frustrating, it is even worse on this side of the fence KNOWING he is seizing, while sleeping and I have no medication to help stem the tide of these!

    Work with your doctors, make note of what you see as far as learning issues!! Make sure that she gets accomadations at school, extra time, help, specific things to study for tests, whatever she needs to excell.

    I REALLY recommend that you ask her neurologist to send her for neuropsych testing. This can help you see what is causing the learning problems. Make sure the neuro knows that speech is affected. He might need to find a different medication! Sam has been on 5 so far. Speech, for him, is only affected by the seizures and is temporary for a few hours after.

    I hope your child finds help and control very soon! Take care!
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    Old 03-22-2004, 09:22 PM   #6
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    Re: Seizures while sleeping?

    Quote:
    Originally Posted by kayakmom
    Lilzmom, I am so sorry that your child has come down this road, but so glad she is on the way to proper care!!! My son has been on many medications, was never controlled by any of them. He is currently off medications and still suffering from seizures. When he was sent to an epileptologist for testing to see if he is a surgery candidate, he had a misdiagnosis that has sent us into limbo. After months of fighting our own neurologist we are finally getting to one who knows more and will not keep him unmedicated I hope.


    Yes, there has always been a cognitive problem with meds for my son. He had undiagnosed learning disabilities, even before epilepsy. The meds made his thinking slow, hindered comprehension, made him tired and cranky at times. They also did not totally controll his seizures. WHile that is very frustrating, it is even worse on this side of the fence KNOWING he is seizing, while sleeping and I have no medication to help stem the tide of these!

    Work with your doctors, make note of what you see as far as learning issues!! Make sure that she gets accomadations at school, extra time, help, specific things to study for tests, whatever she needs to excell.

    I REALLY recommend that you ask her neurologist to send her for neuropsych testing. This can help you see what is causing the learning problems. Make sure the neuro knows that speech is affected. He might need to find a different medication! Sam has been on 5 so far. Speech, for him, is only affected by the seizures and is temporary for a few hours after.

    I hope your child finds help and control very soon! Take care!
    Hi Kayakmom-
    Thank you sooo much for taking the time to respond. It has really meant a lot to me. I feel that your story and your advise is beneficial and I will definately take your advise about the neuropsych testing.
    This forum is great, I love it!!!!!!!!!!!!!!!!!!!
    I wish you and your family the best, as I know exactly what you are going through. If you are a spiritual person, as we are, just remember, you will beat this!
    God bless you and all of those who are suffering either directly or indirectly.

     
    Old 03-22-2004, 11:51 PM   #7
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    Re: Seizures while sleeping?

    Quote:
    Originally Posted by lilz mom
    Hi Kayakmom-
    Thank you sooo much for taking the time to respond. It has really meant a lot to me. I feel that your story and your advise is beneficial and I will definately take your advise about the neuropsych testing.
    This forum is great, I love it!!!!!!!!!!!!!!!!!!!
    I wish you and your family the best, as I know exactly what you are going through. If you are a spiritual person, as we are, just remember, you will beat this!
    God bless you and all of those who are suffering either directly or indirectly.

    Thanks so much. Yes, we are a spiritual family! We know that God can carry us through, no matter where we go along the way. We also know that He can use our experiences for good.

    We are presently in Washington, DC, going to visit our COngressmen and Senators asking for their help in strengthining the ADA back to original purposes in being available to those with epilepsy. We also will ask them to help with continued funding for research, education initiatives and awareness!
    __________________
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    Old 04-07-2004, 01:52 PM   #8
    Baked Tater
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    Re: Seizures while sleeping?

    Oh my god!!!!!!!!! I found you!!!! My wife and I thought we were the only ones going through this.

    My son is in the same boat! He has had more than 10 violent seizures a night for the past 5 years. (he is seven now) He was treated for reflux for two years! It took a med student who was at the time studying seizures to suggest epilepsy as a cause for the vomiting.

    Before the meds he had more than 30 a night only in his sleep. Just before he was diagnosed he was having them when he was awake. Now on the meds he still has ten a night. This week we have had to give him the Diastat every night.

    So far he has been on Topamax, Trileptal, Depabloat (or Kote), Lamictal, Zonegram, and a few others I forget. Now the Doc in Cincinatti is putting him on Dilantin.

    None of the tests so far have been able to pinpoint an area that they come from. There is to much "static for the EEG to pick through. The VEEG is at least proving to the doc's that we aren't lieing to them about the siezures. But so far none of the docs we have talked to have ever seen this!

    Should we be afraid? Any one having any luck with the tests or know of a hospital or Doctor who is knowledgeable with this type of siezure/

    Thanks for posting you message My wife and I don't feel so Alone Now!!!

     
    Old 04-07-2004, 04:30 PM   #9
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    Lightbulb Re: Seizures while sleeping?

    Although my seizures are different from your sons, my neuro has helped me alot!! I see you mentioned Cinci, I'm further north, and my neuro even further.. don't know if that matters??? My neuro's name is Brendan Bauer and he is located in Bellvue, Ohio. I wish I would of found him when I first started having problems!!

    Vicki is off the board right now (has her daughter in the hospital) she once talked about someone at cleveland clinic. Sorry everyone I ever heard of is all up my way, don't know to much about Cinci!! She will be back soon, her person might be better for a child, I don't know...

    I hope this helps! Where are you from?

    Lisa
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    Old 04-08-2004, 01:45 AM   #10
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    Re: Seizures while sleeping?

    We live near Lima and are about 2 1/2 hours North of Cinci.

    Right now I wouldn't care if a specialist was on the moon! I'd take bub to see him. Especially if the doc specializes in his type of seizure.

    Unfortunately we don't trust Childrens Dayton or Columbus (GI Bull that we went through for this)

    We had even resorted to video taping the seizures at home to show the docs what bub did during them. His whole body tenses, then he starts to thrash and gnash his jaw. Towards the end he vomits, but that happens less often with the meds.

    Lately though the episodes have gotten worse and more frequent. The meds don't work well enough to keep him free from the seizures. So now he is on 200 mg of Dilantin twice a day.

    I read up on that stuff and... might as well give him thorzine.

    Heck the Docs can't even tell us where the episodes originate, what type of seizures he has, pretty much no info except ... medicate him. <*******s>

     
    Old 04-08-2004, 10:15 AM   #11
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    Unhappy Re: Seizures while sleeping?

    Some docs are just full of it... I was also put thru the wringer!!! Had one try to admit me into the pschye(SP) unit because he did not believe us!! Said it was stress, walked out of the hospital without shoes on that night when I was able!!!! It took me along time to get over that one and trust another doctor! But then you come across a good one and you start to forget the retards you went thru!

    Have you tried Cleveland Clinic?
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    Old 04-08-2004, 06:30 PM   #12
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    Re: Seizures while sleeping?

    Quote:
    Originally Posted by lilz mom
    Hi-
    I'm new to this. I was surfing and came across this. I am so relieved to know that others are experiencing sleep seizures. All of the doctors that we have come in contact with had little to no knowledge of this. Our child was misdiagnosed with reflux as a younger child. Our child is now 8 and although he is now taking Neurontin and Dilantin, he continues to suffer from sleep seizures numerous times a week. Our child has tried numerous meds, one of which was phenobarbital, and nothing seems to rid this disorder. We were initially told that our child would out grow it, but this is not so. Our child has the same symptoms as the Kayakmom described. By the way Kayakmom, is your child also having some difficulty with cognitive learning??? What meds is your child taking??? Are they working???? What are the side effects that you have noticed???? Our child is now having difficulty speaking clearly,even when he is not seizing!!!! By the way, our child only has seizures when he is asleep, no other time.

    Thanks for eliminating my "alone" feeling!!!!!!!!
    Lilzmom
    My 10 year old son was diagnosed at the age of 7 with benign rolandic eipilepsy that usually occurs during the phase between the sleep state and the awakened state (my son's occur almost always between 4:30 and 7:00 am). This form of epilepsy is usually outgrown during adolescence (seems changes in neurobiochemistry during this transformation have something to do with it). Medication is very tricky. When my son was diagnosed he was immediately prescribed 600 mgs. chewable tegretol (200 mgs. thrice daily which seems to be the "by the book" protocol the medical industry uses). The problem we found with the chewable is that it floods the system which can exaserbate side effects. Also, I took a chance and chose to gradually (against doctor's advice) increase his meds from 50 mgs. twice daily. He is currently taking 200 mg. of carbatrol (time-released that I pour into applesause) twice daily. However, a few months ago when he experienced three weeks of multiple nightly seizures I, as per his neuro, increased his dosage to 300 mg. twice daily. As a result, he could not talk clearly because he could not control his lips; he was not able to stick out his tongue and he continually drooled. The neuro's office interpreted his symptoms as seizure-related and told me to increase the meds even more. My gut told me it was too much medication so I decreased back to 200 mg. twice daily and within two days he was back to himself. He functions best with a tegretol/carbatrol blood level of 7.3 (the acceptable range is 6-12). No seizures in 2 months!

    Last edited by KP2002; 04-08-2004 at 06:37 PM.

     
    Old 04-08-2004, 08:13 PM   #13
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    Re: Seizures while sleeping?

    Hey Baked Tater,

    I am also from Lima (small world eh?), but now I'm away at college. I have an epileptologist that I'm really really happy with at The Ohio State University Comprehensive Epilepsy Center. I'm not sure if they treat children, but you can check out the website if you're interested.

    [url]http://careconnection.osu.***/hospitalsandservices/services/?ID=135&SIDS=5&o=0[/url]

    Good Luck

     
    Old 04-09-2004, 04:30 AM   #14
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    Re: Seizures while sleeping?

    For those parents giving their children medication for night time siezures a quick note.

    I had night time siezures that woke me wide up, gave me a grand mal, then I usually got a headache that wouldn't go away for a few hours. My doctor and parents agreed to put me on dilantin, the dosage was continually increased until I stopped waking up at night, or atleast until I stopped waking up my parents.

    My grades went from straight a's to c's d's and f's. When my mother asked my doctor about it he assured her that it was all because of depression due to the epilepsy.

    For those of you who have been on the board for any length of time I don't have to go through details about how epilepsy medications have a tendency to create depression and complete loss of concentration.

     
    Old 04-09-2004, 12:30 PM   #15
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    Re: Seizures while sleeping?

    You're right abt the meds taking their toll. I was handed a bottle of Mysoline exactly 7 days before I started college. My grades and career in Math went in the toilet. I slept through everything! Sure do wish someone had taken a notice. Also, I want to add that l also had seizures during sleep. At first, it was bed wetting every night, not just occasionally. Much later on, I started waking up in strange places after having gone to bed. My Epileptologist said I was sleep walking, and for me that was a Complex Partial. After the bed wetting stopped with the right med, waaaay many years later, if I woke up wet, I knew I had had a seizure during sleep. I also used to have a simple partial as I was just about to fall asleep occasionally. The general neuros will not jump on nor maybe even recognize your complaints. I wasted to many years going to general neuros. If you can, ask for a referral to an Epileptologist. the Cleveland Clinic has a great Comprehensive Epilepsy Center from what I have read from patients who have been there. Your PCP can give you the referral and that is an easier route to me. Phoebe

     
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