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ache

Seizures while sleeping~

Hello everyone, I am new to this site... It is late, but I thought I would throw this question out - Anyone have grand mals only while sleeping? My apologies if I'm not using the correct verbiage (grand mal, to me, meaning the 'generic' seizures 1 hears about mainly throughout life - full body convulsions lasting a couple of minutes, eyes rolling, etc.).   This encompasses my seizure history, mainly.  Quick summary: If I have a petit mal, it starts in my right arm, electric feeling, tone in the ear, still have full control.  When sleeping, many times I wake up w/ what seems to have started as this right arm petit mal, but has 'spread' into my chest.  Most of the time I can wake myself up out of them...seems if my level of awake/self-awareness is high enough, I can stop a grand mal from happening.  However, there are times when I can not wake up enough.  I then lapse into a seizure, experiencing/remembering far too much (scary!), & then next thing I know I am waking up very groggy, & so on. Some may see this as a blessing in disguise, as I have never had a grand mal when I've not been asleep first.  I suppose it is, but the experience is no less terrifying. Thanks for the feedback, Ache

Comments

RE: Seizures while sleeping~

Ache, Any seizure can happen at anytime. I myself, had several grand mal seizures [officially called Tonic-Clonic] long ago, along with those called complex partial seizures, both either awake and asleep. The petit mal seizures [officially called Simple Partial], I believe happen when the person is awake, whether it's just going to sleep or just starting to wake up. I've had these now for 18 years. What you explained that's happening in your 'right arm, electric feeling, tone in the ear, still have full control' are called 'auras', which are simple partial seizures. Now with what you're feeling being on your right side, the location inside your brain where the problems connect at are most likely on the left-side of the brain. Most commonly in the temporal lobe, which is above your ear. Got any more questions, please post them and maybe I, or someone else too, can help share helpful answers because of their experiences with epilepsy themselves. Bruce J

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"The petit mal seizures, are "Absence Seizure", NOT simple partials." Although I haven't read through all the replies, I just want to add my 2 cents worth. Staring spells are often called "absense seizures", this is based on the years of clinical correlation with the generalized 3 per second spike and wave seen in true Petit Mal.  Staring spells are a manifestation of partial seizures as well. 

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I want to thank you for your reply ellgee,But I also want to say that since you did not read over all of the posted replies, especially my own [message #8] for this one topic, you didn't see my 'edited reply' of correcting myself for the mistake I made in message #2. I have epilepsy myself, and am trying hard to remember everything I have learned, and everything I am still learn day by day about seizures and epilepsy.I am not a professional editor of a newspaper, etc. and if I was, then I, just like the professional editor, would probably still be making mistakes every so often.Please, if you would, take a little extra time to read over all of the replies people post, before you post your's.Thank you.Bruce K

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Hi,I have an 11-year old son who also has grand-mal's only during sleep.  The thing that has often puzzled me with him is that, often on these nights he will come and wake me up saying that he wants to watch a movie or play a game or something.  I tell him to go back to bed and then I will wake again to see him standing over me.  On these nights he ends up having a grand-mal seizure when he does fall asleep.  I have always wondered if he has an aura or if he just has a hard time sleeping, and sleep deprivation is causing them.I would be interested to hear from an adult who might be able to give me more insight.                                                                             Thanks

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This doesn't answer any questions but to add some information I have "nocturnals", I'm not sure what kind of sz's they are. Like many people once the sz ends my bladder sphincter muscles relax and I'm loosing control over my bladder, which wakes me up. Which is the ONLY way I know I've had a nocturnal often. But 4 times in the last year I've had a tonic/clonic (formerly grand mal) and I'm aware of it. I have quite a few t/c's and I've never been conscious, blessedly. I couldn't say I'm totally conscious but I'm aware and worse - I'm physically stuck! That's the worst part for me. I can't move, can't talk, signal for help. I have no idea how long these have lasted. I don't think I'm conscious for very long. I fall asleep though at some point, and remember them in the morning. I find those VERY unnerving. Hope for my lifetime it stays at the count of just 4. I have awakened with those 4 though fully engaged in the sz.I don't think I got enough information from your post or I'm not reading it right but if you're having one sided tonic/clonic type movements with heaviness in your chest? If the tonic or clonic movements don't move to the rest of your body but are one sided? I'd suggest you look up Jacksonian sz's. See if those fit. I have Jacksonians too and those are a tonic/clonic type sz but you're totally aware and awake. Or at least I am. I have those awake and maybe when I'm asleep. I just don't know the sorts of sz's I have asleep. I doubt tonic/clonic tho because I don't have that incredible soreness after.Bruce, I have read a lot of your posts and you seem to know your "stuff" but I felt your explanation of absence and simples was a little confusing. So, in the interest of those new to this fun thing, would you reread your explanation on simples and absences and rephrase? I don't like to correct others by posting something like well Bruce said but I think....blah blah. You have the gift for explanation too but I found that paragraph confusing. I know what you mean, but people new to this I wonder, might not. I think iti'd be helpful to many who read your post fi they understood the distinct difference bettwen absences and simples.Thank you - and I hope you don't take me as being critical. I am not saying that in the spirit of being critical, just thought your explanation as least to me was confusing (But then who knows I might be a little PI too and just didn't "get it").Good luck (to all of us!)

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Gretchen,You wrote: I have quite a few t/c's and I've never been conscious, blessedly. I couldn't say I'm totally conscious but I'm aware and worse - I'm physically stuck! That's the worst part for me. I can't move, can't talk, signal for help. I have no idea how long these have lasted.What kind of seizures are these? what is a t/c? I also have these kind of seizures, and they are terribly frightening. I've had far too many while driving, and since can't drive.. :-( Sometimes, my body goes rigid, and other times I convulse. It starts out for me with loosing peripheal vision, as if I'm in a tunnel. It scares the bejeezus out of me, cause I think I'm going to pass out. I fight this feeling with all the strength I have. But my body freezes up...I know what I want to do, but my body won't react! It's terrifying and frustrating in the least! I also notice, that I stop breathing when this happens...do you also experience these type of symptoms?Warmly,classy1

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My 10 year old son just began having seizures in his sleep last week. The children's hosptial here did all sorts of test and can find nothing "wrong" with him, just that he has seizures. Is this common with everyone else's experience? I mean, its hard for me as a mother to understand how he has never even been REALLY sick before and now he suddenly has a seizure disorder with no explaination as to what caused it and normal EEG, MRI and CAT. Any input would be great!

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My son, now 19, began having seizures in his sleep at age 9, with no apparent illness or cause. Looking back on his behavior I remember he was having trouble in school some ADHD like difficulty, hard time fitting in with peers but healthy. (The disturbances in the brain effects behavior I now know.) The diagnosis he received was Benign Rolandic Seizure Disorder, and was started on Tegretol. His Dr. could not find any thing abnormal on his MRI, and his EEG had very slight abnormality. He was told he would out grow his seizures. He continued having mores seizures; Tonic – Clonic in his sleep, and I noticed other abnormalities in his behavior, talking odd, shaking one arm, blanking out, just as he awoke. His Dr. discounted this as sleepiness. Well to make a long story short he continued to have more tonic clonic seizures, more odd behavior unable to be successful in school due to sleepiness and stomach problems. Last year his tonic clonic seizures began coming in sets of three. I looked for another DR. I took him to Stanford Epilepsy Clinic, where after a 5 day VEEG, where he was hooked up to an EEG for 5 days while being watched by a video camera, he was diagnosed with nocturnal frontal lobe epilepsy. he continues on Tegretol 1800 mg with some Klonopin. He still has seizures; those odd behaviors the other Dr. dismissed are complex partial seizures only in his sleep or upon awakening. I continue to seek a correct treatment for him. Benign Rolandic Epilepsy BRE is a type of epilepsy where seizures occurs mostly at night with little evident abnormality in either EEG or MRI, and is outgrown. Your son might have that type, mine did not. Good Luck Sue

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My 8 year old son did the same he had 1 seizure  september 2003  they told us it was benign rolandic epilepsy and that he may not have anymore.he did not have another one until  december 2004  and now he is having them 1-3 times a month  thyey use to happen around 6:45 am  in the morning   now they are starting in the evening after hes  asleep   any comments would be nice thanyou

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edited per request

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This is in response to posts 59 & 60I have learned that what you describe about seizures occurring at 6:45 AM or just after falling asleep is not unusual.My 8 year-old son is believed to have Benign Rolandic Epilepsy (BRE). I say "believe'" because he needs a more detailed eeg than what is available where we live to confirm the diagnosis but all the other symptoms point to BRE.He had his first and only full tonic/clonic seizure just before his normal waking time (by coincidence, 7 AM) last summer. He has had a number of simple partial seizures since then but none since late December when we think we got his med levels set. All of these partial seizures occurred in the first 15 minutes of sleep. In fact, I can tell when one is coming based on his body movements just prior to the seizure, specifically in the mouth area.I asked our neuro about the timing of the seizures and he said that the brain is in a similar state going into and coming out of sleep so even though the seizures occurred at the two ends of the sleep cycle for the night, the brain thinks it is a similar time period.I also asked why that specific time period and all he could come up with was an analogy. He suggested you view your day like a car running in fifth gear but that when we go to sleep, the brain starts to shift down to fist gear and all night it spends time in the other gears before going back to fifth gear in the morning. It is during the shifting phase that some people are more susceptible to seizures.BRE is usually outgrown and some people don't even need to medicate. We were advised to medicate because of the freequency of our son's seizures. While I'm not a fan of medication, this move was for the best as it stopped our son from worrying about the seizures. At some point, we'll make the trip for the more thorough eeg just so we know how to deal with this long-term but for now we are happy to have the seizures under control.I know a lot of parent ask how their child is affected. Fortunately, we have seen no changes in our son either socially, athletically or academically where he performas at a high level. I know we're lucky as I read many of the other posts.I hope this perspective helps.

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My son had 3 TC seizures while sleeping in 1 weeks time. They were the first ever in his life and he was 13 at the time (11mo ago).... No illness, no problems, however the doctors told us they could have been caused by sleep deprivation. His EEG and MRI were both normal. Hes been on Depakote ER and has not had any seizures at all. He just had a sleep-deprived EEG a couple weeks ago - NORMAL! I have also heard of many kids going thru puberty who have 1 or 2 and never get them again.... this could also be the case with my son - but they cant give us a definitive answer..... so for now, he will stay on the meds for another year and then we will wean him off as long as he stays seizure-free.

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Yes I can had ton-clonics while I sleep.I've had Complex-partial my nocturnal seizures have increased.I wish it was only time I had seiaures .But I have seizures because I have no auras and haven't in years.Belinda

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Dear Belinda, How old are you, how long have you had your condition, what kind of epilepsy do you have? How do you cope on bad days? I'm interested, because I have bad days, your days seem way more rough than mine, but i figured I could learn from how you deal with it.

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Sorry about the mistake I made on my reply about Ache, and everyone else. And thank you Gretchen for catching my mistake. I rechecked what the petit mals were and saw they were the nickname for Absence seizures, NOT partial seizures. But, with what you described, Ache, on your first message, appears to be the symptoms for Simple Partial Seizures, NOT Absence seizures. When a person has a simple partial they're aware of what's going on, and it can last for several minutes. But when having a petit mal/absence seizures, the person is NOT aware, and these seizures are quick, like seconds. To answer your question, because of my own experience of when I had one myself, YES, anyone can have grand mals while sleeping. But at and other times as well. Bruce J

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Hi Bruce: "And everyone else in our Group".,.I just wanted to 'thank-you' for 'correcting' some people about what exactly a 'petite-mal-seizure' is. I started with 'Grand-Mal-Seizures' when I was '6-yrs old',,,but was 'Lucky',,& they changed to 'petite-mal-seizures'. With me, I have the tendancy to NOT remember what happens,,& when people don't tell me (after I've had 1) it really bothers me.Believe it or not,,my 'Specialist/Neurologist' & many other 'Dr's' have agreed that 'Women' are more likely to 'reduce' in types ot 'Epilepsy' (due the fact that when they have a 'child' being the most 'strenuous' thing in life they can go through, & as to myself,,it helped me go from 'Grand-Mal' to 'Petite-Mal'.) Bye the way,,,have you 'Bruce' , or anyone else in the 'Group',,heard of or been on 'Keppra' yet,,,,,Well , if you haven't , it's Honestly 'Awesome' stuff. They say, that you take it with your 'other meds' up to 4-mths. During that time, your 'Seizures' Reduce anywhere from '20%-40%'...And when you're on "Keppra" Alone,,,it Reduces 'Seizures' from '50%-75%' ,,,Pretty neat eh?  Hopefully it will work on ALOT of other's out there too,,,!! Anyone can check the 'website' @,,,,www.keppra.com/or just ,,www.keppra.Hopefully "Someone" out there won't mind being a 'True-Friend' (Pen-Pal) with me,,at times, I can Really use one,,,,Thanx, & all of you's take-care,,Your Friend Tracey

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Tracey,<?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /> First and most important thing I want to say is that you have a ‘true friendÂ’ [pen-pal] right here. Me. I have been on Lamictal since Sept 1997 and have bounced around on other AEDs with this. Just this past year, in mid-July 2004, I started the process of being weaned off of Depakote and slowly onto Keppra. Not real difference at controlling my seizures [simple partial/auras] at all, but my grand mal and complex partial seizures are still under control. Something new has come up though. Back in January this year of 2005, I did some more online searching for information with diet, digestion and epileptic seizures. I found some information, ordered & received the treatment plan, and so far have only made a slight adjustment with by diet as to what particular foods & liquids I consume at the same time. For example, instead of having milk & cereal along with fruit and juice, I divide the two up. One morning just milk & cereal, then the next morning just fruit and orange juice. This and a few other diet changes have lowered the amount of sps I was having, and when the sps do happen, theyÂ’re not a strong and/or last long. But there are other separate steps I need to do and my plans are to talk to my primary doctor and neurologist when I see them both next week, about this treatment plan.Found an update on one website just last week. Instead of there being over 2.5 million people in the United States who have epilepsy, like I posted in message #11 on this post topic, itÂ’s now over 2.8 millionPwE in the US.Got any more questions or comments just to share with anyone here, please do so. Stick with us Tracey.Bruce J 

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You can email me anytime and you have a friend here

RE: Seizures while sleeping~

90% of my tonic-clonics are when I sleep.  They usually occur about 20 minutes-1 hour after I fall asleep.  My neuro doesn't act like this an unusual event.  So I am assuming that there are many epileptics who are in the same boat

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alliepeanut -- my son had a full tonic/clonic seizure in July, then a number of simple partial seizures in October before we put him on meds. He's only had two episodes since then (one of which we think was before his meds dosage was properly set).It appears that he has Benign Rolandic Epilepsy as every symptom he's displayed ties into this syndrome -- except -- his EEG doesn't show the spike in exactly the right place. Our neuro will neither confirm nor deny (I sound like a politician) a diagnosis of Benign Rolandic without my son taking a more thorough EEG.I offer the above as background for you as you read what follows: What I iniitally thought was odd was that my son had his tonic/clonic seizure just before his normal waking time and every simple partial seizure in the first 15 minutes of sleep. In fact, I can now actually watch his movements and facial twitching (pre-seizure) in his first fifteen minutes of sleep to know when he is past the point of having a seizure.My neuro explained that the brain undergoes quite a status change upon falling asleep and upon waking. He correlated it with using the gear shift on a car -- you spend the day with your brain in 5th gear but at night you start shifting gears down to REM sleep and then back up to start the day. It is in this shifting period that some people are more susceptible to seizures.You're not alone.

Seizures while sleeping~

Hi Kodankk, I know this post is 7 years old, but, I am wondering if you are still a aite member and if so would like to message you. My daughter is 5, dx'd this spring and her picture fits exactly with your son's. Thanks, Rachael

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My 9 year old has been diagnosed with benign rolandic   and he has been having seizures quite often usually at 6:45  am  but he just had one in the evening,  we are not medicating him yet.  but can you tell what your child is taking The seizures are very scary  usually when hes done his right side of his  body stays paralyzed for a while.

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I know what you are saying...My son was diagnosed with Benign Rolandic epilepsy about a year ago. He started by having his first seizure about 10 mintues into his nap. Over the past year he has had five in total. The first two were 8 minutes induration and the last three were only about 2 minutes or less. It is a very scary thing...We sit on egg shells everyday wondering when it could happen again.

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Hi brodhes momMy son is also 9 and had BRE.  We are not medicating him.  But today he had a seizure that lasted 2 minutes then was paralized for a few minutes afterward.  Is your son on med's??? Please reply asapThanksnk

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My daughter is 10.  Two years ago she had three seizures within a three month period - after she fell asleep.  She was not put on meds and did not have a seizure for two years.  Last night she had another...  There is definately a pattern of being overly tired, and excitement in her life.  She has had headaches for the past two weeks, which she didn't have before.  She has always talked in her sleep sporadically, and would sleep walk at times as well.  Has anyone else with BRE had the same symptoms?  Thanks much!

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alliepeanut,FYI, there are over 2.5 million people in the United States who have epilepsy. Over 50 million in the world.I was in the Navy and stations onboard the aircraft carrier USS SARATOGA CV-60, now a museum some where on the east coast. But it had @5,000 people on it. So yes, there are alot of people with epilepsy in the same boat, just much bigger that the boat I was on.Welcome aboard shipmate. lolBruce J 

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Alliepeanut, First of all I have to make this comment.  We have a daughter whose name is Allie and her nickname is peanut so I couldn't resist commenting on how cute your screen name is to me.  My poor husband informed me that it was a night of two seizures for me lastnight.  I've had CT, EEG, and MRI and they have shown no abnormalities,  but I continue to have these seizures that seem to be increasing in number.  I recently switched from Atkins diet to a low fat diet and apparently that is definitely not the right diet so back to Atkins I'll go (LOL)!  I live my life on the Atkins diet so I'm not sure why I decided to change.  That was the only thing that the doctor said may be contributing to the frequency of the nighttime seizures.  I have the complex partial seizures and have only ever had them at night and I too seem to have them when I am sleep deprived.  It's weird because it's when I'm exhausted that I have them.  It's almost like I can predict them. My first seizure which happened about 6 years ago they attributed to a diet pill called Diet Fuel that contained ephedra.  I am always obsessing about my weight.  Then I tried another diet pill that was Ephedra free afew years later and had another one almost immediately so they attributed the seizures just to the pills.  It's all so strange, but I wanted to ask you about medications and if you have had any success with them.  I've been reluctant to start medication, I guess that I'm just scared of them.  Do you have any advice.   Sorry to have dragged on, but you seemed to have some knowledge and I'm pretty new to all of this as my seizures up until recently were so far apart and not frequent that I sort of neglected them.  I'm hoping that changing my diet back and making sure that I'm getting adequate rest will help!  Thanks in advance for any helpful information that you may have for me!        

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mY SEIZURES FIRST STRARTED ONLY AT NIGHT. i HAD GRANDMALS THAT LASTED AANY WWHERE FROM 2-10 MIN. iT WAS VARY SCRAY FOR MY HUSBAND AND MYSSELF. AS I GOT OLDER MY SEIZURES CHANGED .iHAD 5 DIFFERENT KINDS OFF SEIZURES. i LATTER FOUND OUT THAT WOMEN WHO HAVE EPILEPSY, THAT THEIR SEIZURES INCREASED.

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Mine are the very same. I usually get them about an hour after I get to sleep. The problem here is I don't know I have had them until my parents call me from home. I phone them right from home and don't even know how I dial there #. My parents say I mumble a bit until I get out of the seizure then I'm ok. The problem is I have no clue I even called or talked to them at all. The following day I am very tired at work.

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My wife had Grand Mal's only while sleeping for 3 years and only every 6 months.Then she had one in the shower.  Now she has them anytime but usually at the 6 month interval.Bob 

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Hi All,Here I thought I was perfectly fine and controlled by my meds...Seizure free...Right? WRONG! I guess I am still having them in my sleep. My poor Hubby and Dog are showing the signs of them.

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Same here, only no memory of anything happening. I do talk in my sleep and it wakes me up. But, migraines in the morning are common. Dilantin400mgs. at night does seem to keep it in check during the day.

You are definitely not alone on this one.

 

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Hi Everyone,My name is Edna.  I am new to this site.  My son Miguel, he's 7 1/2 years old, started having seizures when he was about 6 1/2 years old.  He has tonic clonic seizures also when he is sleeping.  Some have been when he first goes to sleep (between 5 and 30 minutes into sleeping) and some early in the morning.  He's now on Lamictal 150 mg in the morning and 200 mg at night and Zonegran 250 mg at night.  He was also on Carbatrol for a while but the neuro thought it wasn't controlling his seizures.  He used to have one seizure a month (every 4 to 6 weeks when he was on the Cabratrol) now he's having them every two weeks.  This is really puzzling me because the neuro thought he was improving.  She told me that his last EEG showed that he was improving.  Doesn't really make sense to me, so I'm looking into a new neurologist because something doesn't seem right.  I'm sorry I'm straying from the subject.  When my son has seizures when he sleeps or close to sleeping, he could feel them, I guess he has an aura.  Most of them start in his right hand and then his whole body goes.  I try to let him stop on his own but I usually end up giving him the Diastat.  Then he comes out of it crying and screaming because he gets so scared.  The neuro says he will probably outgrow them and I'm hoping he will.  It's a very scary thing to see, but everyone tells me that he's not suffering.  I'm so glad that he's never had them during the day, like in school.  Thanks for letting me vent a little.Take care.Edna    

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 I only have nighttime seizures.  I am 37 yrs. old and the first seizure that I've ever had hapenned six years ago and at that time I went to the hospital and they did a CAT scan, EEG, and MRI and found nothing.  THe next time that I had a seizure was about three years later and had the same run of tests and they said that all my tests were normal again.  Last week was the first time that I've had two seizures in one week, according to my husband because I don't remember a thing, but the seizures are always in my sleep and up until have never been consecutive.  I just had all of the tests again and nothing as of yet, but they are finally referring me to a neurologist.  I just want to get to the bottom of all of this and am praying that they will never not happen when I am sleeping.  That's the only thing that I'm thankful for, but according to things I've read they could happen at any time.  I'm hoping that whatever I have is some kind of sleep disorder and that nothing would ever happen in public or where I could hurt myself!  It's all so scary.  I just wonder if anyone has similar types of seizures to mine.  I believe that they are complex partial seizures in my sleep according to everything that I've read on this site!  Bruce, you are a huge help and very knowledgeable, I appreciate that!     

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Renezellweg, <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />First I want to say thank you for your compliments. But just so you, and everyone else who reads my reply, that I am not a doctor, nor any other type of health professional. IÂ’ve just one of the millions of people with epilepsy. What IÂ’ve learned about has been by surfing the Internet over and over, and then reading what I found over and over again. Even though IÂ’m trying to become a mentor through the Epilepsy Foundation of America, IÂ’m going to share what I found with anyone I can, whether itÂ’s the support groups online or local support group near me. The number one problem people have about epilepsy is ‘FEARÂ’. And now I personally feel that the reason why is solely due to the lack of communication. Not know what questions to ask, and not finding or getting the ‘common senseÂ’ correct answers to the questions when they are asked. There is one source with someone who discusses a lot of information about seizures & epilepsy, to people in a simple and so easy to understand way. This was at the S.E.E. Program I attended just last year in November 2004. For all the information available online about the S.E.E Program go to www.theseeprogram.com. The speaker, Robert Mittan, Ph. D, not only knows more about epilepsy than some neurologist do, he knows about up-to-date information as well. Dr. Mittan presents his two full day conference on weekends; yes weekends, Saturdays & Sundays. So check the website and look over the scheduled dates and locations by clicking on ‘Programs DatesÂ’. Ok, let me work more with what youÂ’ve explained.  Inside your two replies here so far, in the first one you said that youhave the complex partial seizures; and then in your second reply you said youbelieve that they are complex partial seizures, but you also mentioned in this same second reply that “they are finally referring [you] to a neurologist”. HereÂ’s some questions IÂ’d like to ask just to find out more indepth details about what youÂ’ve said. Have you ever been seen by a neurologist or epilepsy specialist? What was the type of doctor who told you that your diet may be contributing to the frequency of the ‘nighttime seizuresÂ’? Was this doctor a neurologist? Have you actually been diagnosed of having complex partial seizures, or any seizures at all? You said that your husband informed you that you had seizures on a particular night. Ask him what heÂ’s actually seeing you doing and please pass that on to explain it to us. When a person is having a complex partial seizure, it can look like theyÂ’re sleep walking. But if what youÂ’re doing only happens while youÂ’re asleep then you may be actually sleepwalking, and not having any complex partial seizures. Yes, it is highly possible to have seizures due to sleep deprivation. This can happen even if the person having them doesnÂ’t have epilepsy at all. My number question is this. Did you have any seizures and/or seizure-like feelings before you started working with any special diet/weight loss programs? If so, then what were those feelings and were they diagnosed by a neurological doctor as being actual seizures? The scary part might not be from the seizure medications, but from the diet pills that could be the actual source, or part of the source, for the feelings youÂ’re having and possibly appearing to be seizures. Please tell us your answers to these questions, and then we can explain information about the seizure medications if itÂ’s going to be necessary for you to be taking them. Drag on as much as you want, because the more you can tell us, gives us more of a chance to try and help you. ThatÂ’s what the support groups are here for, to communicate and help others to loose the fear about epilepsy.Bruce J

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  Bruce, thanks again for all of the information, it's always very helpful.  I did send you a private email with more details of my situation and look forward to hearing from you again.  In regards to what another lady said a little earlier, I also find there to be somekind of hormonal link between my menstrual cycle and the seizures.  I have the seizures very rarely, four over my entire 37 years.  The first ever seizure was in 1999 and then the next was three years later and then the two consecutive ones were just last Monday and Tuesday night.  They have always happened a day or two before my period starts, though, and I have never had a doctor ask me about my menstrual cycle in relationship to the seizures...never!  I think that I also mentioned that I live my life on Atkins and last week due to a plateau had changed my diet to more of a low fat, low calorie diet and was wondering if maybe that may have contributed to my most recent seizure.  That's another thing that the doctor's have never asked me about.  I am just thankful that so far my tonic-clonic seizures have been only at night when I'm sleeping.  I also excercise regulary and try to eat right for the most part so I am just baffled by how I could have started having seizures after no history of them at age 31.  They do think that the ephedra containing diet pill that I was taking may have brought the seizures on, but no definitive answers and that's what drives me so crazy.  I hate seeing my husband so horrified over these things, as for me, I don't even remember them.  I just suffer from the memory loss and having my body feel like it's been used as a punching bag in the few days afterwards!  Well, good luck everyone and I will update as to whether or not they put me on medication or if I decide to take any of these medications.  I'm just not sure if the side effects of these medicines are truly worth it.    

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Hi ReneeZ...I just read your last post. I feel like maybe you are a younger version of me. Except that once I started having seizures in my sleep, they continued to happen bi weekly or monthly at best when I haven't been medicated heavily enough. Compared to the dosages of medications I read about on this site, it takes a whole lot less for me to stay seizure free. At least I am not having gran mal type episodes. I do have the shakes sometimes and I do twitch a little...and when I had the first seizure, the first medication prescribed was keppra and it made me want to hurt other people AND myself! I didn't understand the danger back then of  choosing 'how much' or 'how little' of the meds I should ingest and I stopped taking it without discussing it with the doc...guess what? Another seizure within 24 hours.The topamax makes me feel stupid. No other way to put it. It makes my hands and feet tingle and I can't remember words. I can't remember what I did with the 'stuff' I wanted to take upstairs when I  am cleaning the house on the weekends and I can't carry on an intelligent conversation at work which could cost me my job.I am in transition to Lamictal at present. Suddenly, I can focus! I have my ability to think back. My ambition is back and while I also have my appetite back (one advantage of the t-max) , I still work out so I can handle any potential weight issue. I am baffled too about why I started having seizures when I never had this problem before, but I am NOT GOING TO LET IT STOP ME, period.  Could it be the anti depressant I was taking for 18 months that later was taken off the market ? Maybe. But, it was discontinued for liver damage, not mental problems, so who knows?Could be onset of menopause?...ok..... That just means better sex with a really handsome hubby if I can find the right meds to keep me from freaking out at night and still feel good during the day.If this Lamictal works without the Tomamax, I'll be my 'type A' self again and God help the rest of the world. Good luck!

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Great way of thinking!I love the menopausal stuff. I had a hysterectomy in August. No one thinks my seizures are related to that though.What Antidepressant were you on? Dayna

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Hi Dayna...I was on serzone. That was terrific. I have never and I mean NEVER had a need for an anti depressant before. I have a terrific and blessed life...I am a naturally upbeat Pollyanna type who usually has kids following me around to see what the next fun thing is going to be and if I'm working, I'm the one who is 'rallying the troops' y'know?I took the serzone when a lot of stuff happened at once: lost my mom, broke two feet at once, lost my job, smart kid in HS doing really stupid stuff, and then he got his girlfriend pregant (all in the space of about 4 months!) . I learned that this causes a chemical problem in the brain that causes the extreme depression I felt. I couldn't work out or power walk (hard to do in a wheel chair), I gained weight, I was in mourning and my son (well, I don't even want to go there)....The serzone was a life saver and all those issues did work themselves out....Everything and everyone is back on track. The doc let me take this drug for 18 months before I read somewhere that you shouldn't take an anti depress. for longer than 6 months ( there may be side effects). I was also drinking a lot (and I mean a lot of diet soda which contains aspartame.) Now, the docs dismiss this chemical as an issue too. But if you research it, you will find that the FDA has a lot of documentation on the ill effects , including its ability to cause violent behavior and seizures. There is evidence as well that it becomes a volatile chemical when it is stored in temperatures that are like over 70 ° or something like that which may explain why some soldiers come home from combat in the desert after eating ready meals and are violent (they often contain items with aspartame in them). I stopped ingesting both of these things in my own search for the reasons I might be having seizures at this stage of an otherwise normal and very healthy life. 

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Geez,  I never thought of the aspartame in the millions of diet pepsis that I drink!  I am a Diet Pepsi junkie, to say the least!  Man, Cookie you've had some tough times, I admire how you manage to stay upbeat!  I dread it when my kids are old enough to get into "serious" trouble!  I just pray that none of them end up having seizures!  I am still just thankful that they only occur in my sleep!  I though about drinking a Red Bull the other night but was fearful that I might have a seizure from whatever makes a Red Bull a Red Bull!  Well, gang, I'm off to Cancun.  Just dropped the kids off at grandma and grandpas's house two hours away and I feel so free!  I just want to go to Cancun, have some exotic drinks and not have any seizures!  I'm thinking that since I just had one last week that I should be in the clear, but I guess you never know!  Wish me luck!

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Don't worry , be happy! That's what they say in the Carribean! I wouldn't go scuba diving or drink the water...and if you have drinks outside the hotel, drink them up (without ice) , take my word for it , it's still water and it's not always water that's filtered...I know, I learned the hard way! Have fun!!!!

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Have a great time in Cancun! ENJOY!

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Wow Cookieparty, I have been on AntiDepressants for Years(10). Seriously, I took myself off them when I was going to college, and I felt great...for a while. Unfortunately during Physiology (4th semester at jr college) I started having the trouble with the left sided numbness. I also was having trouble with a kidney. Went back to MD's, they got mad that I removed myself from meds without their permission and put me back on Xanax and changed me to Prozac. Said trouble was stress.I took that for 2 more years until I found my next DR who changed me to Effexor XR. I finally came off that a couple months ago. And am now getting my normal energy back.Now I never thought during these years that I was depressed. I kept telling them I was not depressed. They said it is for the stress. HA! They just didn't like my Attitudes I think.Now naturally I am a very friendly Happy person. My friends tease me that I don't know a stranger. But on some of these Anti Depressants? OOOH you Do not want to know me. I am never mean...I just withdraw and don't care...About Me...about my family...about anything at all.Oh and Yes I do know all about the aspertame thing. I no longer drink Diet anything. I was a Big Diet Pepsi Drinker/ as was my Hubby. Well he is Hypoglycemic. We ended up at the ER with his blood sugar below 20 , halluncinations, combative, and He and I are about the same size. I had to fight him LITERALLY to get him in the car. I now drink Water, thank you. Although it bums me out that I can't drink fresca. I used to Love Fresca. Hubby He drinks Pepsi Regular. I used to go to Starbucks and get a big Coffe with an extra shot,drive the hour to work, and then stop at the circle K and get my Monster Energy drinks(2 large). I worked the 4pm-12:30 am shift so I would get all that caffene in my system before I had to do the hour commute home. And people wonder why my heartrate was 102 bpm? And I had High blood pressure usualy 150/102...so one night I collapsed-unable to move left side, slurred speach- everyone thought stroke?Nope it was just the beginning of my fun.

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Doesn't sound like a lot of fun for sure... but you sure sound like a driven soul.... don't let it get you down...I really think if we find the good ol' fashion stuff ...you know the exercise, the fresh foods sans the additives, even coffee in moderation, a glass of wine (not a bottle), etc. , we don't need anti depressants. Yea, sometimes we all need help I guess...I know that they helped me when everything hit me at once...but, I do wish I had researched and planned for short term usage (like 6 months)....I didn't know enough and hind sight as they say is 20-20.Now, with the meds for seizures, I just want to take whatever minimal dosage is required to work so I can work and think and I suppose that is everybody's goal. I really don't want anything to do with any medication but I've tried NOT taking it and I lose...those bad boys the GM's come right back smack in the middle of the night. Right now, I have been free from these attacks since 12/24/04 and I like it that way so for now I will keep popping these pills anyway.Hope you get to a point of some normalcy ....I'm praying for you and crossing my fingers (and anything else I have 2 of just in case!)cookieparty

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Thanks Cookieparty,My Bigones seem to be lessening, and the small ones are actually tolerable. Really some of them are kinda funny to me...not that I am making fun of anyone else...just myself. I don't trust myself to put on makeup right now...these jumps that my hands are making could be disasterous. LOL I could see it now, lipstick across my cheek, mascara across my forhead or nose. I would look like a 2 year old trying to put it on. :)Well, I guess I better see what my 4 year old nephew is doing it is too quiet in his room.Have a great day. And thanks for the prayers, I will keep you in mine that yours stay away OK?Dayna

RE: RE: RE: RE: RE: Seizures while sleeping~

Cookieparty,Wow!  We really are similar!  My seizures started when I was 31 years old and they attribute it to a diet pill that I was taking at the time called Diet Fuel which did contain ephedra.  That was a grand mal seizure in the middle of the night where my x-husband gives the same account as my new husband, who by the way is 12 years younger than me, and very handsome also (LOL)!  I never had another seizure until after my new husband and I were blessed with a beautiful baby boy and me being me was desperate to lose the baby weight quickly and tried an ephedra free diet pill called Zantrex 3.  Needless to say the seizures were back, but I had two of them on two consecutive nights where I was taken to the hospital again and the EEG, CAT scan, and MRI were all repeated as they were also given 4 years earlier when I had my first seizure.  Once again they were considered inconclusive because, apparently they found no abnormalities in any of the tests!  It's all so bewildering!  Due to the length of time that had lapsed between the seizures noone seemed very upset or even interested for that matter.  I went to my general practitioner and she just acted like I could see a neurologist if I wanted to but it was probably just due to the diet pills and I must be super sensitive!  Well, my husband witnessed another grand mal seizure last Tues. night and once again he was scared to death, but at least knew what was happening and knew that it would be over in approximately 4-5 minutes, which it was and he allowed me to go back to sleep, thank god!  It's much better to just be able to go back to sleep rather than paramedics standing over you making you scared to death, I mean petrified!!!!  We are leaving for Cancun tomorrow, of course they are expecting snow storms here, which with my luck will delay our flight (LOL), but I have an appointment with a neurologist as soon as I get back to try and get to the bottom of this.  I have not been on any diet pills since 2003.  The only thing I did that night was have 1 glass of wine, but that's nothing compared to some nights, like New Year's Eve for instance!  I have noticed that my period always starts one or two days after I've had these seizures.  I've seen from this site that some people link it to that.  I've never had a doctor ask me that.  I've also never had a doctor ask about my diet, I too am always on Atkins, but had switched to "The Body For Life" diet the week that I had my last seizure.  I wonder if that really has anything to do with it?  Oh!  There are so many questions in my head that it makes me crazy!I was cracking up when I read that you do Atkins and you excercise regularly, people make fun of me about how committed I am to the gym!  I feel better mentally, though, when I workout!  How are your seizures doing?  Is the medicine making them better!  When I heard that Topamax makes you have no appetite, of course, I wanted to be on that one (LOL)!  I read that your side effects were awful, though, and I didn't like that!  They've always left it up to me as to whether or not I wanted to try medication since the seizures are so infrequent.  To be honest I am just so afraid of the medications because of all of the negative side effects that surround them.  Boy, I could certainly relate to you when you were talking about not being able to remember what you were doing or searching your brain for the right word!  I do it all of the time and I was an English major and feel so stupid!  I think that people that I'm trying to carry on an intelligent conversation with must think that I'm an idiot!  I'm fortunate enough now to be a stay-at-home mom, but I can't even imagine being in the workforce again with the way my memory is!  That's why I wonder if I'll just be worse if they put me on medicine!  It's all so scary!  The only thing that gives me a little bit of solace is the fact that my seizures, so far, have only happened at night.  Tell me more about your seizures and how often you have them.  When did they decide to put you on medicine?  I swear, my doctor acts like it's no big deal, but after I've had the seizure I feel like I've been beaten to a pulp and I workout!  I can't imagine how someone that isn't used to working their muscles must feel!  I guess on the up side, it's a really great workout (LOL)!  I tend to go on and on and I'm sorry about that, but it's always nice to talk to people that have this strange whatever it is going on inside their brain like me!  I'm not sure if that made sense, but you know what I mean!  Unfortunately, I fear I may never know why these things come over me when they do, but a few answers would be nice.  Keep in touch and thanks for responding!    

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Cookeeparty & renezellweg,Did either of you also drink the "energy drinks"? I Was never asked about the Diet pills I used to take. It has been a while...but I started drinking those high energy drinks just before my seizures started getting really bad.Dayna

RE: RE: RE: RE: RE: RE: Seizures while sleeping~

hi Renee About the medicines, and the monthly cycles...oh and the younger husband (go girl!)..... Now, the cycles, the only doc who has treated the hormonal and menstral cycle theory as a serious one has been female and I find her to be extremely credible. Catamenial (SP?) seizures are associated with menstral cycles. While my newest 'female' doc says that she thinks that my nocturnal seizures are not being 'caused' by the onset of perio menopause (that is the time of craziness in your hormones before you actually are menopausel...some months you have a period, some months you don't, some months it happens for about 5 minutes, some months for about 15 days, etc., the hot flashes for some, seizures for others!!!!!) , that they are probably GRAN MAL seizures because of the hormonal imbalance of periomenopause. When your estrogen level is high, 'closes the door to seizure activity' and when your progesterone level is high, it 'opens the door to seizure activity' per my new lady doc. As for the Lamictal, I am looking forward to weaning off of the Topamax and being just on the Lamictal. With the Lamictal in my system, it seems to have counteracted some of the negative effects of the T-max I could never have written these notes before). But, I am hoping that once the T-max is completely out of my system, things will be even better.By the way, just got a transfer to a bigger better position in my company so it better work!

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Hey CookieWhy is this last post all crossed out? Did the web site administrators do this or did you? I think it has some good info in it. It is exactly what has been going on with me. I'd love to get a lady doc like yours to treat me. Lynn

RE: Seizures while sleeping~

Hi.Saw your message and can relate. I've had nocturnal only szs since 1993. Original cause of problems is most likely a cycling accident I had years ago; I fractured my skull and it's come back to haunt me.I have them every 4-6 weeks. I seem to have some control over them. If I go to bed angry or stressed, this has been a trigger. Too much exercise can do it too altho a reasonable amount on a daily basis seems to be the best "medicine" I have. I have a pre bed routine that includes 1/2 hour of yoga and writing in my diary. This seems to help too.I've tried several different meds w/o much luck. Am currently on 450mg of Dilantin (200/250).There are some great books on things you can do. One I really like is "Epilepsy, A New Approach".Good luck!Jim

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