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Morning Sunshine

Seizures During Sleep

 

Hi, I'm new to this site. I have most of my seizures in my sleep or in the morning after waking up.. my last one being two days ago. It seems that either illicit drugs, alcohol or lack of sleep bring most of my seizures on, and I'm working on getting them under control by giving up these things rather than taking my medication, I find the medication Valpro has some bad side effects.

I think my last seizure  was a big one becauseI have been a scattered mess since then, I've slept for two days straight now and I have yet to leave the house. I can't think straight so if this doesn't make any sense I hope u understand why. My whole body is aching and my memory is slowly returning.

Anyways I'm almost 25 and I was diagnosed about 2 1/2 years ago.. does anybody else experience sleep related seizures?.. I truly believe if I can get enough sleep I will  get my epiliepsy under control.

Thanks for any of your comments.

Comments

Re: Seizures During Sleep

my doc gave me a low dose of adavan [ lorazepam 1mg] and I make sure I eat something before i go to bed no sweets helps so far

Re: Seizures During Sleep

Mornin, do NOT quit taking meds abruptly!  This can cause you to have more and more violent seizures.  Call your doctor immediately and talk to them about possibly changing your meds...or adding a complimentary therapy of some sort and weaning off the drugs slowly.  Do NOT just quit taking your meds.  As you are having seizures primarily in your sleep,  you are at a higher risk for SUDEP. SUDEP is Sudden Unexpected Death in Epilepsy.  This is the primary suspected cause of death for John Travolta's son among other epilepsy forums.  Please, be careful and call your doctor.

Re: Seizures During Sleep

F@*# never heard of SUDEP before but now your scaring me :o

Re: Seizures During Sleep

Not trying to scare you Mornin...just need you to see the worst case scenario before you make your decisions, and need you to see how important it is to be honest with your doctor.

Re: Seizures During Sleep

I haven't been to the doctor since I was diagnosed, but I am aware of what stopping meds abruptly can do and I reduced the dosage slowly and the condition didnt seem to worsen however unfortunately after two years I am having frequent seizures and have decided to get back on the meds.

 I've recently started uni which means late nights and early mornings so I would rather be safe than sorry.

 Thanks for the comments

Re: Seizures During Sleep

Sheesh. neither have I heard of it, but, it has occured to me! I have these things at night-very rarely during the day-I can`t say I`m happy to read these stories, but it is better to know I am not the only one. I have had many, many tests-I have not been diagnosed with anything -I am 57 years old.The started in 2002. Lately, I wake up gasping for breath sometimes, as my head and neck are violently twisted to one side. Then during the day, sometimes the twisting occurs, but I can use strenth to stop it if I can, and it is better to be awake for that kind of thing. my muscles are sore as is my throat. I have awoken to loudly chattering teeth-cracked teeth and bitten lips-slobber-accidents-all kinds of embarrassing things which believe me no one wnts to hear about! I feel crazy when I try to tell the drs about it. Does anyone know what this is ,really? I have taken some seizure meds in the past as kind of a test to see if I would improve, but theyall made me sick to some degree, and I mean pretty bad. I have headaches, horrible bouts of forgetfulness in which I don`t know what common objects are at all. None of this is constant, but i am getting a little scared to go to sleep(I live alone, which may be a blessing with something like this). I am desperate for information! One dr told me to stop looking into this-not kidding-and none have mentioned that they have heard of nighttime seizures. Any info shared would be so greatly appreciated! Thanks everyone for sharing on these pages-it wasn`t easy for me to write this and i am sure it wasn`t for you either.

Re: Seizures During Sleep

Really,
I know when my grand mals were not under control they almost all happened while I was asleep. they also really screw with you for days. I cannot say how important it is to get them under control though. I am someone who went without medication for seven years. It is not necessary. These medicines help you life. Also. the less seizures you have, the less likely you are to have them in the future. So, my dear, Depakote, or valproic acid was my nemecis. I hated it so bad. Well, now i am on Lamictal and that is much better. Try something new or whatever because you need to stop having them. I know how it goes. It's hard to figure out and know what to do. but take it from me, I suggest you get on a medicine that works. Ariel

Re: Seizures During Sleep

Definitely do not cut your meds out all at once. Talk with your doc first. Trust me, I did that back in 2001 and had my 2nd grand mal as a result.

I'd strongly recommend quitting alcohol completely. Tobacco also, if you smoke. I quit both after my second grand mal, but ended up going back to drinking a few years later when I believed I was seizure-free. When my third one hit in 2007, I had been drinking quite a bit. My ex (living with her at the time) had said I would spasm in my sleep. Not severe, but enough to wake her up.

As far as the illicit stuff goes... I don't know of anyone that has had seizures from mj. I have heard from several people that if anything, it has benefits. Anything beyond that is not something I'd experiment with - especially uppers. I even cut out most caffeine - only two cups of coffee in the morning, and occasionally tea. I quit drinking soda years ago.

Good luck, and get well.

Re: Seizures During Sleep

Both my husband (68 yrs.) and my oldest grandson(18 yrs.) have E. As they have learned, you need to make choices in your life that help keep you healthy. It's your choice. I'm not going to preach to you because from what you have written you sound like a smart young man and besides I'm sure you know what things you need to change in your life to help safeguard against seizures. My grandson has had sleep seizures. From what his family and doctor can determine it is because of him not taking his medication or skipping them altogether. Probably not intentionally after all he is a teenager and has many distractions. With my husband getting enough sleep was always an issue. So is eating regularly. It is also very important to continue w/your meds. If a particular medication is causing side effects, by all means talk w/your doctor. Maybe you can go on a lower dose or a completely different medication entirely. But, for your own sake as well as others, please don't just indiscriminately quit taking them. Your family and loved ones want you around for a long time so do what you can to keep your seizures under control and you safe. By the way, my husband, after trying three different drugs over the years, has been seizure free for over 15 yrs. God bless.

Re: Seizures During Sleep

Your words of wisdom to the young man are thoughtful and well-taken. Your words solicit encouragement instead of preaching. Thank you for giving me some much needed insight to better communicate on this difficult topic with a young person.

Re: Seizures During Sleep

My seizures are only in my sleep.  I fall asleep and then waking up usually a second before i have a seizure or sometimes  don't wake up at all.  I found the best help for me on top of always taking my seizure meds is that i went to a sleep doctor and was diagnosed with narcolepsy.   I was always so tired and could never get enough sleep.   My new narcolepsy pills are amazing I am a whole different person life is good again.  My last seizure really messed me up my doctor and I tried to slowly go off my meds it was a big mistake.   my seizure was 20mins I could not walk for two days I was so sore.  It took a week for my speech to return and I still do a lot of mental excersizes to get my vocabulary back.  A year later I have mostly recovered from my last seizure but I am still struggling with my speech. 

Teal

Re: Seizures During Sleep

I appear to have siezures in my sleep also, but thank God there is a lack of frequency to them, at least to my knowledge.  I just had a siezure last week Wednsday and it was the first one of that sort in almost 3years. It was the worse one I've experienced.  I am still struggling to remember things and some things are not worth remembering.  This is all so very new to me.

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I started having "sleep seizures" as a child.  Mine are like a dream superimposed over reality.  They often happen as I am coming out of sleep and is like a vivid dream but yet I can here what is happening in the house around me like a dog barking or my family.  I can not move or speak.  My mom was mentally ill so as a child I never told anyone for fear of being labeled as crazy.  Unfortunately not getting treatment was bad in my case because they worsened and I began having other seizures and eventually Grand Mal in my late teens early twenties.  My seizues are in the temporal lobe.  They have never been able to get the "sleep" type seizures under complete control and I can have these at other times.  I get very sleepy with a very long prodrone (I do not have Narcolepsy).  It took for me to have one of these episodes during an EEG for the Neuro to get a handle on it.  There are so many meds to out there I am sure if you are patient they can find one that will work with you. God bless.

Re: Seizures During Sleep

I actually signed on today wanting to ask about "sleep seizures". I am very new to this whole seizure thing. I dont even know if I have epilepsy. I haven't been diagnosed really with anything. My seizures started about a month and half ago and nobody seems to know why. I was hospitalized for a week and I know I was having grand mals in my sleep but only cuz people told me. The past few nights I have had EXTREMELY restless nights, despite taking my Ambien (I'm an insomniac also). Usually the Ambien works wonders. So I'm wondering if I'm having seizures. Of course I live by myself so I really have no idea. Is there any signs/symptoms you notice when coming out of a sleep seizure?

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Hi I used to experience absence and grand mal siezures up until surgery 4 years ago,since surgery I now have nocturnal siezures.My wife tells me I make lip smacking noises then go walkies rumaging through cupboards and even making tea(unknown to me).Recently I have been coming round towards the end of my siezure and feel very disoriented finding it diffacult to get a grasp of what day it is or what is actualy going on,I also have a horrible taste in my mouth and a strange smell sensation.Normally a good days sleep brings me back to normality although Im always worried about going back to bed incase I have another siezure.I currently take 1600mg of tegrotol daily 1000mg naproxen daily and eat paracetomol like sweets due to the horrendous headaches I get normally leading up to a siezure.My family also say I get depressed and irritable prior to a bad night(unknown to me)I know Im always down after a siezure,thats because it still scares me to bits. Does anyone else have monthly walkies doing strange things as on my last one I pulled the kitchen draw fronts off.God knows what Im looking for,Im starting to think its my sanity.Take care all.

Re: Seizures During Sleep

Hi there!
My name is Jarrett I have been experiencing seizures pretty much all my life. I am 33, so I have a good idea of what you are going through. I just had a couple 2 days ago and I may have had a few in my sleep too. When I woke up I felt very light headed and everything in my body felt out of place. I even felt my brain move when I walk. That is why I lay around and sleep most of the day afterwards. It takes a couple of days for me to recover. The good thing is it only happens on the weekends every 3 or 4 times a year. I am like everybody else though. I have a full time job and I go to school to work on my future career as a Graphic Designer.
I take 1700 mg daily of tegretol-xr and 1500 mg of depakote as well. I tried to get off Tegretol once before when I was a kid, because they thought I grew out of it. They were wrong. I had continues grand malls that they had to put me in coma to stop them. Which evidently gave me amnesia for a little while but everything soon came back. Until I graduated from high school and I must of had a really bad one, because I have had amnesia ever since. From high school on down is gone. But I learned to live with it. Other than my epilepsy, migraines, and asthma I am as normal as anyone else. I will walk around like you, but only when I am awake. I have learned to control myself. It just takes time. If you feel strange, light head, you have trouble responding to people, or your eyes get very heavy, then it is time to lay down and tell someone you are not feeling well and that you are epileptic.
Don't let epilepsy get you down. At work and with my friends I am one of the coolest and toughest guys they know and they look to me for advice at times. I work out constantly and look to Jesus to help me through my life. Jesus has done a great deal for me. I still live with my mother to help support her and she has been there ever since for my seizures. My ex-fiance helps to support me when I need someone to talk too. She is an amazing woman. So don't be discouraged by your-epilepsy. God Bless You.

Re: Seizures During Sleep

Hi I have undergone Neurosurgery almost 7 years back for Right frontal Meningioma in simple words it was Brain Tumor of almost 4cm size.

I was never taking any alcoholic drinks, drugs etc. but when I have visited very high altitude for vacation due to lack of oxygen this got triggered and of course it happened during sleep. later on I was on medication for anti-siezure pills Eptoin then later on after surgery I had seizures atleast once or twice a year all were during sleep. Now I am closely monitoring Dialentine Level (Eptoin Drug level) which should not go below 10 micro gram per 10 ml to ensure no seizure. I am also taking Frisium 5 mg another drug to avoid seizure. So far things are in control and frequency is once in a year or less. The pain every one of you are going through is simillar to mine. The only way out is medication and proper diagnosis. Today I got my level tested it si lower will be getting it tezted from other lab then will take some action to ensure it does not go low. DOnt be panic it is good that it happen during sleep. One more thing I want to tell about me, I get a typical feeling and a typical dream before it happen which indicate that it is going to happen to me. You try to identify some similar indicator to help yourself better. God Bless You.

Re: Seizures During Sleep

hi,

My name is lindsay. I to have alot of the same problems you do . I smack my lips loud enough that it wakes my husband up and he sleeps in a totally different room.  I have to noctornal seizures once a month.  I too they say get owly and crabby and am extremely tired the day of that night i have proglems. Things will often taste funny or weird . All though i have never wet the bed during a bad night. I would love to know what brought all of this on. Please if u have any suggestions for me please respond. Im open to any and all suggestions.

thanks all!

Re: Seizures During Sleep

Morning, I have partial complex during waking hours and generalized tonic-clonic seizures only during my sleep. I sleep alone, so how do I know? I wake up out of a hard sleep, half the time the bed is wet. The pillow is wet from drool and sometimes that is bloody because I have bitten the sides of my tongue or the insides of my cheeks. I can't move right and I feel like I've been run over by a steam roller. For a day or two after the seizure, I am "stupid"—don't remember things well at all, sometimes forget things right after people tell me, slurred speech, and I don't get jokes or figures of speech. I am not taking medication for them because I only have four or so a year and they must not be very severe because compared to other people I seem to recover comparatively quickly. Also, they had me on such a high dose of Dilantin to control them that I felt like I'd had a couple of beers all the time. It wasn't worth it to me. I learned what my triggers are—not enough sleep or protein in my diet, too much sugar or starch, and too much caffeine—and I work to avoid them. Obviously I have not consulted my neuro; I don't want to have to go back on the meds. But I would never recommend you do that. If you're going to try to control the seizures by avoiding triggers, please do so in cooperation with your neuro. Also, there are some new pillows out there for people who have seizures while sleeping. You might want to check them out.

God bless,

Rowfan 

Re: Seizures During Sleep

Mine don't seem to have anything to do with how I'm sleeping, anything I drank/ate (although I don't drink alcohol at all anymore and eat very healthy), or any other factor. They just happen every so often. I wake up in the middle of the night with this LOUD sound in my head. It's kind of terrifying. I've learned the hard way NOT to get out of bed under any circumstances, because I tend to fall and hurt myself. I just have a trash can beside my bed and lean over the side because I usually vomit while I'm unconscious for a minute or two. It happens too fast for anybody to help me, so I've just figured out my own strategy. Actually, think of it this way - having a seizure lying in bed can in fact be safer than having one standing up (and then falling on a hard surface)! I've had insomnia all my life and Lamictal makes it a little bit worse, but I've found that exercising 5 days a week REALLY helps. My guess is that if you cut out drugs and alcohol and get yourself into a good routine of regular exercise, water consumption, and nutritious eating, you'll feel a lot better. DO NOT stop your meds suddenly, though, or you risk having a massive seizure. Talk to your doctor about a step-down schedule. It'll take several weeks to a couple three months, depending on your situation. If you're interested in alternatives to meds that might work for you, I recommend "Epilepsy: a new approach - what medicine can do for you and what you can do for yourself" by Adrienne Richard and Joel Reiter, MD, published by Walker & Co., New York, 1995.

Re: Seizures During Sleep

 

Hi,

I'm 29 and had my first Grand Mal seizure in 2002 when I was 22. I have had two seizures while asleep, awoke with memory loss but realizing that I must of have had a seizure. Within 5 minutes I was completely conscious. I don't smoke or drink and I exercise and eat healthy regularly. I am reluctant to take any medications whether it be for headaches, colds or seizures. I took Valproic Acid for about 1 1/2 years and it made the seizures worse as I would have small seizures along with the big ones. Against doctors orders of taking double the dosage, I stopped taking mediction. I then had two Grand Mal seizures every year as opposed to 1 a month along with smaller abscent seizures. Since November of 2007, when I had my last seizure I began taking NOVO-CLOBAZAM mainly to get my license back. Well, I have been seizure free since then. I hate intoxicating my body with chemicals, but I can't find a way to stop them without the medication. I had a friend who last year was diagnosed with epilepsy........2 weeks ago he died from a seizure while asleep. Loss of breath and suffication. It's difficult to answer your question because seizures occur for so many reasons. Some, like mine "unknown cause". It may help to get regular sleep but the cause is unknown. Until or if you are able to find the cause you should get some medical advice, whether it be chemicals or a natural way like naturopathy or homeopathy. I know of someone who was anemic and would have seizures every time his blood level would drop. A medical doctor couldn't help him or didn't care to, but a naturopath through herbs was able to help him. He is seizure free.

R.I.P (Awet),

your friend.

Re: Seizures During Sleep

Hi, I also experience seizures during sleep. I had my first one at 15 yrs old. I spent the nite with a friend and woke her up shaking her waterbed! I have been on seizure meds since that day. I had a stretch of 6 years w/o any seizures and was on a small dose of 50mg Topamax a day (working to wean it off). However, in Jan. 2007 my boyfriend came in one morning from work and found me confused and with a chunk missing out of my tongue post seizure. I was a night shift nurse and, I too, thought the lack of sleep was a cause for my seizures. Unfortunately, I have been a day shifter  for almost a year with no decrease in my seizures. I think it is wise to stop the drugs & alcohol and to make an effort to sleep/eat better. I had to go through many drugs before I found the right combo for me (I've had to do that whole process again since the "relapse" and a new neurologist, since mine left town). It really sucks (to be blunt) to be 25 years old and taking scheduled meds (that stuff is not supposed come til later, right? lol) but if you want to be able to have a quality of life, it's required.  Good luck with your epilepsy!

Re: Seizures During Sleep

I've had about four small seizures during the nighttime, and it was a scary thing. Since I've been on my medicine (Keppra) I haven't had those seizures anymore. My neurologist told me that Keppra has the least side effects, maybe you should talk to your doctor about it.

Re: Seizures During Sleep

Hi! I started have minor seizures when I was about 11( I am now 26) and up until last year I thought and told everyone even the different neuro's said that that's when I developed them.I had been to about 4 or 5 different neuro's that have said the onset of seizures was due to my stress level during my parents divorce. Well then last year I was finally told that (After my neurologist looked again at all my mri's and CT scans) I've had eplipesy since birth.  I am now married and have had many many seizures while I was a sleep. Which has also resulted in about 10-15 shoulder dislocations/per arm almost every seizure I've had while sleeping. 

I've been on 4 different drugs since age 11 and finally found that lamictal is working for me.

Re: Seizures During Sleep

Hi there!

I only have grand mals when I am sleeping.  I never did until though until I was 22.  My whole life before that was kinda crazy because at night I was convinced ghosts were trying to hurt me because at night I would always wake up paralyzed & it took a lot of effort to get myself out of that.  I would wiggle a pinky finger or toe & then have to jerk my whole body & get up and walk around for a long time.  I never have gotten good sleep in my life.

I was 22 & in bed with my boyfriend (now hubby) & had a grand mal.  I shook, bit my tongue, bled out of my mouth, & he thought I had died.  Luckily I never piss myself!  I hadn't taken a breath in a few minutes & I took a big old whoop of air in finally.  He called an ambulance, in the meantime I jumped up & tried to do something but fell down.  I don't remember any of this, I just remember waking up in my living room with the worst headache ever & a bunch of people I didn't know.  I asked what happened?  They said you had a seizure.  I thought what's that?  They asked me my boyfriend's name, I couldn't remember it.  I got sent to the hospital for a CAT scan & the next day for a sleep-deprived EEG which showed an interesting slow curve pattern followed by a generalized pattern during sleep.  After hearing about all of my past issues I was diagnosed with epilepsy of course & started on Depakote.  Simple & complex partial seizures, generalized seizures (grand mals).  Took Depakote, hated it, started Lamictal, Tegretol, Dilantin, Neurontin, finally Keppra after I took a break from meds altogether for 2 years & had lots of grand mals.  When I had two within a few hours & got a black eye & tore my mouth up really bad I decided to try meds & now take Keppra.  It's not a good idea to stop meds altogether, I gradually weened myself off & then was free of meds & had lots of seizures.  That's what happens.    

I know about SUDEP but you just can't worry that that will happen, just take care of yourself & do the best you can.  The nice thing about sleep seizures is that I am always in bed, my hubby is usually there to take care of me, & he can can my work if he needs to.  The bad part is the recovery time, the stupidness that sticks around for days & makes it hard to think because it hurts so much.  Plus eating food ... ouch.  My tongue is scarred.  The great news is that I take Keppra which is awesome.  I still have partial seizures in the daytime somewhat often but nighttime is so much better.

Good luck!!   

Re: Seizures During Sleep

You are like you didn't wake up in a puddle of pee

Re: Seizures During Sleep

Hi, I am 43yrs old, started having seizures when i turned 40yrs. I do not know what brought it till today i have not found the answer. Most of my seizures are during my sleep. When it first happened i was so scared the family believed I was bewitched. I had done EEG, CAT scan but nothing shows the causes of what is really going on.

The last one was in August 2008, it was in the morning and i was trying to wake up and I do not know what happened the next thing I saw was the ambulance people trying to help me and i had blood all over me. My children tell me I fell on my face and broke my two front teeth.

The medication that had been tried on me is Topomax and Epilium. The combination did not help, the doctor decided to cut the topomax. I have not had any seizure from then I am taking 3/300mg a day fo Epilium. My survival and strengths has been brought by meeting other patients in the hospital while admitted and we will talk about this problem. I thought I was going crazy, because it will take time for me to get my memory back and I will have a terrible headache afterwards. What i have noted is that if I am excited or angry I get this seizures or this headache which will make me loose focus for some time.

I hope we get cured soon because I really do not understand why did I develop epilepsy so late in my life or in the future the neurologist learn more and the future generation be helped with this disease if i may call it that.

Re: Seizures During Sleep

 hi there mournin,

 boy I think we all have a story... Im 37 and I was 13 when I was diagnosed and well I would have my sz while I was asleep.

the thing is I really cant remember all of them anymore...ok I remember the first 3 I remember the one where I fell out of bed and almost cut my eye oh and i definatly remember the one where I was driving......yeah I do get memory loss but see its been 24 years for me and ive been on just about every med for E you can think of and well I had brain surgery so.....

I know I cant drink I know i have to have a full nite sleep i know stress will bring a sz on i know for me at least flashing lights will trigger a sz even certain sounds also will trigger a sz I have to eat like a diabetic as well or it will trigger a sz ......

BUT if I didnt do the Dance I would have never known how my life would be

I dont regret any of it I keep fighting back im not gonna let E win!!!!!!! you cant either get yourself back wipe the dust off your knees and keep going....keep learning ...keep fighting

Never ever give up

`Christina Vargas

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I admire your attitude, and feel very much the same as you - I will not let E win.
I am 58 years old now and had my first seizure when I was 19, so it is a long time! I have been taking Epanutin capsules 100mg and 50ml pill only at night, and it has been controlled most of the time, but if I am stressed, have wine, or eat certain rich foods, they start again.

Just recently have been told to increase my calcium intake, as my bone density is decreasing, and was taking the pills at the same time. As a result I started having seizures again, and the Dr has said it could be due to the Epanutin not being absorbed (because of the calcium). It also occurs when I take flu medication, so one has to be very careful what medication is taken. Enough sleep is also important.

I am fortunate to have a supportive family and they have helped me stay positive and fight on!
Pawps.

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Hi pawps.

Just wanted to respond to your comment about the calcium interfering with your seizure meds.  I am almost 50 ...soon...ugh...lol.....and I have been having more seizure or anxiety...we're not sure which...and I am also taking Calcium supplements and now I'm wondering if maybe that could be causing some of my problems?  Hmmm..interesting...I also have a very supportive family, couldn't do this with them.  Take Care.

Re: Seizures During Sleep

my husband has a similar situation as you. he was diagnosed at 29 and has seizures in his sleep or right after waking up. he has been on lamictal since being diagnosed. his doctor added trileptal, but that increased his seizures. after stopping that and increasing his lamictal, he hasn't had a seizure in 5 weeks. talk to your neuro about trying another med. he hasn't had any side effects with lamictal.

Re: Seizures During Sleep

oh and most of the seizures he has had has been after sleep deprivation, stress, and/or drinking alcohol. marijuana doesn't seem to hurt or help.

Re: Seizures During Sleep

I happen to get my seizures during my sleep as well and  usually. Though am 26 2/3 yrs, I've beeen epileptic since 12 and have only had 2 fits when am up, the rest when am asleep. Its sad no one can seem to understand what really causes my seizures and sometimes I stay for one, two years without one and then one night I get a seizure...  I had one on 3rd June and It seems to have changed my world...I don't feel like me and my boyfriend says he thinks something changed that night. I didn't go to work the next day and since then my head feels like its borrowed. Can't explain!

I read someplace that some people do have seizures due to lack of enough slee, recreational drugd and alcohol and the like and maybe you should get to understand what brings your seizures and stop indulgingn in it.  Maybe you should stay away from everything you think causes your seizures.

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starting monday i began to research about seizure and epilepsy. since my son got a seizure last sunday 2am and 5am, this is his first time. last monday i went to his pedia but he refer me to another doctor. that day i cant stop my self from crying.he got the simple partial epilepsy. i thought this is just simply seizure that can easy to be healed. now, i followed the doctor medications. and i also ask help in my neighbors...the do's. i let my son eat fish ( fattyy fish ex. piña2x (called in the philippines), banana every meal and snack time,tu-ob (bisaya term) once a week or twice a month (this is same as sauna but you have to put pahid, burn rice (brownish in color), ice water,etc. and every night i wipe him with luke warm water and give him an oil massage. these are the traditional way,. also,stay away in radiation,need early sleep, not giving him bad feeling (angry, fear and depressed) and as possible not too much use of the mind. and dont forget the on-time taking of medicine. thanks to God he's doing ok!

during meal my family also eat what my son eats..like fish, browished rice and banana. we give him lots of hugs and kisses...we, just pray that he will totally ok...

Re: Seizures During Sleep

Cirella I'm sorry you're having to deal w/this . . . I know from experience epilepsy can cause lots of worry and anxiety for the parents of a recently diagnosed child. However, it sounds to me as though you are doing all w/in your power to help your son. Sometimes it takes time to find the right medication(s) to help get the seizures under control. It might help to keep a diary of your sons' seizures, the time of day/night, what he was doing when he had the seizure, etc., and share this w/your doctors. Keep communication going w/your childs' doctor(s), try to keep him safe as possible and remember people can live good, productive lives with epilepsy. Keep positive and don't give up the quest to find the best, most effective treatment for your son. God bless.

Re: Seizures During Sleep

Hi!

I have noticed that when I am sleep deprived, exhausted, dehydrated, and have been an emotional wreck, it can cause them.  I believe I actually had one yesterday, after not having my meds for 3 days..ugh.  I have been very emotional the last week (one family member having passed away, and another suffering a heart attack while saying goodbye to the first.) also relationship problems.  So I have been crying a lot, not sleeping, very exhausted from all of that.  I have not been eating very well, if at all.  Stomach problems (both kinds), so I have been dehydrated.  I have noticed that harder I try to keep myself awake, I start feeling "weird".  Lightheaded, lethargic, headaches, dizziness.  I feel that, for me, those are warning signs.  I believe I have had some in my sleep.  I wake up exhausted, as if I havent slept a wink, or I sleep in so late that the whole day is pratically gone.  I have made calls that I dont remember, and texts that are so off the wall, they are almost funny.  I look at them and like, wtf did I say?  Wake up with bruises I cant explain, or cuts that are either still bleeding or scabbing.  I figure, if im sleeping and they happen, at least im not driving when they do.  That is how I found out about my seizure disorder....a head on collision.  

Re: Seizures During Sleep

It has been SO interesting reading all these stories about sleep seizures!  I have had partial complex seizures that occur only during sleep for the last 20 years, and so far my neurologist is the only doctor I've described my seizures to who hasn't looked at me like I was crazy!  Any doctor that I've told my seizures only happen at night has said that they've never heard of that :)  I'm glad I'm not alone!  I usually get a warning from some numbness or pins and needles in my right hand during the evening.  I wake up abruptly, usually screaming.  I often will get up and try to run out of the room.  I experience a great deal of disorientation, although I usually remember much of the seizure.  My husband always tries to talk to me and ask me questions...his theory is that it will help me get back to reality faster, but it just frustrates me because I can't speak coherently at all during this time.  When it's over, he always wants me to explain what happened, but I'm exhausted and just want to go back to sleep.  I sleep like a rock til morning.  Usually I'm ok in the morning, although occasionally I'm still a little "out of it".  I've had very good control of the seizures with Tegretol.  I was on phenobarbital at first, but had more breakthrough seizures with that.  Recently, my neurologist started to wean me off of it, because I had been seizure free for 5 years, and was having normal EEGs.  When I was almost off completely, I got very bad numbness in the right side of my body that lasted throughout the day.  We thought it was a withdrawal type symptom from the meds, but now she believes it is a sensory seizure. I also had my first sleeping seizure in many years. Needless to say, I'm back up to full dosage of the Tegretol.  I still am getting off and on numbness, but it is so much better, and we are playing with the dosages now.  I wholeheartedly agree with what everyone said about not stopping your meds suddenly...very bad idea.  Only do it under strict doctor supervision.

Re: Seizures During Sleep

hi i have been getting for what i called DIZZY SPELLS for about 20 years, maybe longer but they feel like a de ja vu and sort of pins and needles in my head, lasting for about a minute , i had 2 EEG scans, 2nd one came back abnormal and thats how i got diagnosed with complex partial seizures. In june this year i was in bed going to sleep when i suddenly heard this loud motorbike noise in my head, then my body went all stiff, i couldnt move, i was very scared b ut i was awake, i was fully aware of what was going on. I  made an appointment with the doctor whom made me an appointment with my neurologist and since then ive been put on lemotrigine but since i started taking them on the 11 th of july the seizures have been getting worse.

Re: Seizures During Sleep

Hi Morning Sunshine

I just turned 28 and my seizures started 4 years ago about 2wks after I turned 24. I was having exctremley violent convulsions every 3 months on up until last year. Throughout 2008 I was doing the same thing you did. I would wake up with my lips chewed up and swollen as well as my toungue and I would have very bad scratch marks on my upper inner thighs. I am taking Phenytoin, Lamictal, and Keppra. The Lamictal has stopped my grand mals and the Keppra has helped my petit mals. If I were you I would def. talk to your docs. and make sure that you do not miss any of your meds. I had surgery done to my left temporal lobe to stop my seizures which has been awsome! However, before that if I missed even once dose I would have a seizure. I hope things look good for you! Take care!

Anna

Re: Seizures During Sleep

I am 24 now and was diagnosed at 18.  I was coming home from Washington(state) to South Dakota with my family.  I fell asleep in the van and woke up on a hospital bed.  My mom saw me haveing a seizer in the back of the van and went strate to the hospital.  Befor that  I would wake up in a puddal of pee, and sore musals.  I would just throw my sheats in the washer and flip my matres cuz I thout that I would just get made fun of for still wetting my bed at 16.  My first seizer wail awake was not for 2 years after that.  Sens then I have had about 5 I think, but that is only the grand mals.  I have know idea about the leser ones I have them all the time.

I have hedakes all the time, like everyday allmons.  I have thout that it was a sideafect of the meds that I am on.  My doc. gave me a med for them, but it is about $40a mont.  I was doing some resurch and found out that deing low in folic acid canmake it happen.  then I remember that my first doc sead something about being prom to that so I have started on a folic acid supliment and that has helped so far.

I sometimes wake up at two different times.  I will be awake physically but not mentally.  That will come a little later.  I have trubal doing anything for 1/2 the day, even moving.  I am usually am back to normal by the next day.

Dez Lovik

Re: Seizures During Sleep

Des, you wrote

so I have started on a folic acid supliment and that has helped so far.

Since I started supplementing with folic acid, I have been having trouble with my Dilantin level.  I suspect that the folic acid supplements have been lowering my blood level of phenytoin.

http://my.epilepsy.com/discussion/987128

If you continue to take the folic acid supplements and you see a similar problem, will you please leave a comment on the discussion above?

Thanks and good luck,

NewJersey

 

Re: Seizures During Sleep

I too have seizures during sleep about three per month. My wife thinks they happen when I worked to hard durring the day or because I have a couple of beers during the a week. I was taking lamictal at that tiime 400mg/ day, but the doctor prescribed Kepra 1000 mg/day and I haven'nt had any seizures in the last month

Re: Seizures During Sleep

i'm 19 & was diagnosed when i was 7. the majority of my seizures have been in my sleep, the rest have been w/i 2-3 hrs of waking up. i have tried avoiding all known triggers (even though i've never seemed to have any other than flashing lights and arcade sounds) and i still have them every few mths. best of luck 2 u!

 

Re: Seizures During Sleep

Hi Everyone:

 I have been a first responder and you never get used to witnessing a full blown grand mal (sp?) especially when it is a loved one. It has definately impacted my day today.

Here is my story of the events of this morning. There are many stories that are similar and the doctors did a one day EEg and found nothing. Ironic that this seems to be par for the course for doctors trying to diagnose this.

At around 5 am my step daughter came into our bedroom, her mother was at the gym, and she complained that she was shaking and couldn't stop. I asked her what kind of shaking and she quickly disappeared out of the master bedroom. I quickly got to my feet and headed into her bedroom and turned on the light. She was in full seizure. She was stiff like a board and was shuddering wildly with a sucking noise coming from her mouth which was also foaming a bit. She was totally unrepsonsive to my yelling her name and clapping loudly. Her eyes were rolled back in her head and I could only see the whites of her eyes. I immediately called her mother and observed her bretahing and heart rate. Her heart was pounding out of her chest and she did not seem to be breathing during the seizure. Once it stopped she looked like she was dead. Her breathing returned and her heart rate began to settle down. She was completely non-repsonsive for 15 to 20 minutes after the seizure. She slowly came around and said she remebered coming into our bedroom with the shakes but that was the last she remebered. She said she has had similar symptoms on a few seperate ocassions but did not mention them to us. They were all while she was sleeping. Her dad, who does not live with us, has only experienced the after-math with the non-responsiveness and that is what sent her in to the doctors a few months ago for what turned out to be a normal looking EEG. SHe said whe was very tired after the siezure and complained of an upset stomach. Through-out this incident I was monitoring her breathing and heart rate and at the seizures worst at had 911 already up on my phone but seeing a seizure before I felt this would have scared the wits out of her so I waited and watched very closely. I feel bad for her as this looks like living torture. Any Suggestions would be warmly welcomed.

Loving Step Parent

Re: Seizures During Sleep

My husband started having sz less than 2 years ago (we're in our 30s). They have ALL been GMs in his sleep. He has no memory of them and generally recovers quite well after. So it is up to me to track and describe them. We did the neuro. with all the tests. They told us nothing (except that he doesn't have any tumor etc. Thank God). My question is, should he go on meds. when they only happen at night and he doesn't seem to suffer many after effects? I know there are many bad side effects to meds. Has anyone heard of someone having them only at night and then suddenly having one during the day?

It has been great to read so many accounts of different experiences! Thanks all. 

 

Re: Seizures During Sleep

Once you start meds, you can't stop! Trust me I've tried! I have nocturnal epilepsy and only take my medication at bedtime. I've been taking lamictal for 6 yrs now and have decreased in dosage significantly since but I will forever be taking seizure meds. I stopped taking meds for about a week (not by dr's orders) and I had a big seizure while taking a short nap. I really feel anyone with seizures should take control of it because it may get worse and you don't want to wait for that one bad episode. I've had seizures where I bit my tongue so badly, I had to get stitches and saline strips to protect it!

Re: Seizures During Sleep

Hi. Im new here but the situation is the same. I have seizures/anxiety attacks in my sleep that started when I was a sophmore in high school. Im now 22 yrs old. It starts, sort of, like an asthma attack; only, it's when Im sleeping. After awhile, i begin to shake and become unconcious. My parents say it doesn't last long but they are becoming more frequent now. When doing the sleep study and etc., doctors say I have irregular electrical waves going on but didn't know whether to call it anxiety or seizures. I have recently started Clonzepam- an anxiety med- and I do not like the way I feel so I stopped taking them. I realize that whenever Im stressed out, overworked, tired, etc., they come more often. It happens so quickly but when coming out, I dont remember a thing. I wake up with a painful headache and alot of soreness in my arms, shoulder, and legs. It is amazing to read some many stories about seizures- or in my case, seizures/anxiety attacks. I thought I was alone but Im glad to know that I have a group to share my thoughts and feelings with. Just remember that as long as you pray and ask God to strengthen you where you're weak He will do just that.

 To God be the Glory!!! Stay blessed and take care!!!

Re: Seizures During Sleep

I had night-time seizures also two years ago, after all the treaments and Doctors(neurologists) I had no answers to why I was getting them. One day I was talking to a friend of mine and I was unaware she was suffering from seizures as well and told me it was because she was addicted to red bull & energy drinks, funny thing was that around that time i was also addicted to red bull, I would drink 3 or 4 a day and all that sugar and caffaine it just breaks down your entire nervous system. Well I stop drinking energy drinks and I havent had one since. I have heard drinking alot or if you doing any drugs also causes these seizures. But most important thing is to stay strong, the more information you can find out the better you will be. Study your seizures, keep track of the things you were doing before the happend. Don't let the Doctors pin you down in a corner...be strong and you will see you find out what's causing them.

Re: Seizures During Sleep

Hey all, I had my first seizer (grand mal) August 20th; what a strange experience.  I was asleep and woke up with my wife, dad, and paramedics surrounding me and did not have a clue what was happeing.  It took about 6 hours before I was sort of back to normal.  All tests (CT, MRI, and EEG) came back normal.  I just had another siezure when I was napping on Sept 21st.  My wife found me both times-the worse thing about it is she is over 7 months pregnant now.  The out patient DR. started me on dilantin on the 21st.  It is my third day taken it with no ill affects.  I see the Neurologist again tomorrow.  I do not do drugs, I only get drunk 3 times a year, and may only have a coffee and a tea a day if that.  I have no idea why I had the seizures.  I have to thank everyone for all their comments on this web site, as it puts me to ease a little, that I know I am not the only one going through these experiences.

 New to the Seizure thing.

 

Re: Seizures During Sleep

I have nocturnal E. I had been thinking I had one or two szrs a month. I deicded to get a camcorder. I found I was having more szrs than thought. To all with nocturanl Es I advise running a camcorder for about two months and check each day. It will take about 60-90 minutes to check. You may be suprised.

Mornin.., I suggest stop the dope and booze and get your sleep. That may be what helps. I have been on Neurontin, and Flebatol. My doctor added Valpro and for the last two months no nocturnal szrs. Two months is nothing to get cheerful about.

Good Luck, E_Loner

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