seizures during sleep

Tina - posted on 03/25/2010 ( 31 moms have responded )

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my biggest fear is that my daughter will have a seizure during the night and i wont know. Has anyone had this experience? My daughter is now 10 she was 7 when she was dx with absonse seizures, we got those under control finally, but then she had a gran mal in December and 2 more since then. i guess i want more answers.....why are they getting worse?? I am a nurse, but i feel like i should be able to do more fore her, and know more as to why they are getting worse.....from satrring episodes to tonic clonic, the dr's just say there are no real answers. i know the r caused by miss fire of neurons...i guess i am just looking for more>

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Julie - posted on 04/23/2010

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HI,
I'm sorry to hear you are spending your time worrying over something you can't control instead of spending time doing something with/for your children, yourself, and/or family. That may sound rough, but I understand you are concerned for their safety and you are worried about them, their future, etc., but as someone who has epilepsy, who is a nurse also, and who suspects her child has a seizure disorder, I think I can safely say that how you are reacting is affecting your children. They will be picking up every cue from you and others that something isn't right, you're disappointed, you're scared, you're worried, etc. and they probably won't talk about it. Missy - I will email you.
I do want you to ask yourselves some questions.
1) What is normal? Is it what society defines, is it what you define, is what your child wants, is it what the medical community defines as normal, or is it something totally different or is it constantly changing?
2) What does "controlled" mean ? Seizure free forever? a certain time period? Do you really want to be "controlled"? How do you think hearing those words over and over again over the years combined with the words "normal life" will make you feel?
3) Did you notice I introduced myself as a person with epilepsy - the medical condition DOES NOT DEFINE ME. I never say I am an __________. There are to many misunderstood representations with that word. I've seen 3-5 references the past couple of weeks in the media regarding seizures and they were wrong! Not what I needed portrayed in society in the movie theater and tv to help people understand about first aid and what I go through. Diabetes, cancer, autism, obesity, and heart disease all get coverage but epilepsy doesn't even though I bet I could link autism, heart health, diabetes, and obesity to epilepsy through research that has been done. I wouldn't use the word suffering either and I don't consider myself disabled though I know under the ADA I would be. I have faced many challenges and still do. I don't drive - but I walk and I was green way before anyone else was. I save money on car insurance, gas, and repairs. I spend time walking my children to school and we get to see things that others in cars don't get to see and we talk. Time management is no problem for me. Getting a job and going places more than a few miles away is.
You talk about SUDEP (sudden unexplained death in epilepsy) - something the dr.'s don't talk about to the patients. Some people I've talked to have said the cause of death of their loved one was cardiac, but we don't get assessed on our heart health do we? Our central nervous system is electrical just like the heart and the brain controls the heart, to over simplify things. I've told dr.'s the past 20 yrs. my heart has been going off beat. I've even bought in studies, seen cardiologists. Cardio says it's neuro. Neuro says the study wasn't big enough even though the study says there is a linkage bewteen cardiac arrythmias and a certain type of epilepsy. Why aren't the dr.'s putting two and two together?
Have you ever wondered why all patients don't have sleep studies done if sleep is such an important part of our lives, especially for those that have seizures while we sleep? I could keep posting questions for you to consider, but I don't want to worry you more. I just want you to think about what your children are taking in. The behaviors you are seeing, the things they may not be telling you because they know you are worried/disappointed/scared and they don't want to bother you more, the peer friends they aren't making or the school issues (twice exceptionality, gifted/talented - I have websites if interested), issues at school and society (laws IDEA, HIPPA, 504s, ADA), how people are reacting to them and how they see people with epilepsy portrayed in society, etc. . It's a lot to take in, I know, but it will affect your children a great deal and if they don't have a person that undestands what they are going through to talk about it they will need to find some other way to vent their frustration, anger and disappointment. Let me know if you want me to post the websites or need more information. Sorry this was so long.

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31 Comments

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Leah - posted on 06/23/2010

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Check out www.emfit.com for mattress monitors for epilepsy as well as look for an "anti-suffocation pillow" so if she did seize and turn facedown, she would not suffocate. We found one on a UK based website, just google it... we have ordered both as our daughter cluster seizes, tonic clonic for 4-5 minutes and most are when waking up, asleep or falling asleep. We are scared of SUDEP too..

April - posted on 04/23/2010

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she sounds alot like my son Noah had his first age 3major 31/2 hours later it stopped had them off an on for next year or so had them more less under contol and then 2 yrs ago he has been having 1 to 2 major tonic clonic one every 3 to 4 months and I too because he stops breathing had this fear he nows shared a room with older brotherand we had him put on a o2 monitioer at night he also has Autism severe asthma and food allergies ect ect.... but has aleved our night time anexity alot though...

Julia - posted on 04/22/2010

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i have a daughter that is 8 years old she was getting seizures from age 6 her seizures starts when she goes to sleep she cried out for cramp in her legs and then she goes into the seizure.The doctor say she may be epileptic

Rebecca - posted on 04/13/2010

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I think most girls see a change in seizure activity prior and during puberty. Since their body is changing, they react differently to the medication. Our experience has been that the type of seizure changes based on medications.

Claire - posted on 04/11/2010

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hi! im claire, 32 yrs old, from philippines. I was diagnosed with petit mal seizure when i was 7 yrs old. they had me on tegretol. i've been taking this since then until now. before, i cant control my seizure but now i only get to have seizures when i sleep. at first, my husband got worried. i think he got used it, and it seems pretty normal for us. my doctor said that i will be like this for life. i'm not worried tho because i live a normal life with normal kids. as long as i take my medicines on time, there's nothing to fear. everything is manageable....so i guess, you don't have to worry much.

Tina - posted on 04/08/2010

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Thanks for the info, it is all just so frightening.Thus far i dont really have any warning signs from her, she doesnt know when she is going to have one.i find myselfconstantly checking on her and just always worried. i as all moms just want to her to be able to lead a normal life. Possibly the seizures are being triggered by hormonal changes....i think puberty is close. I am happy with our neurologist, but i thing they deal with it so much they just shrugg some of my fears off!

Elaine - posted on 04/08/2010

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I have a 12 year old son who has night seizures but also has the abscences his has only started in the last 3 months, yes its scary but I've had them all my life and mine are at night. It is scary because noone is there. Try asking to use keppra they seem to achieve good results as does lamotrigene/lamictol. There is always an answer I was diagnosed with juvenille myclonic seizures. So yes it can be found out what type she is suffering from, especcially from special scans they can see what side of the brain causing it or an EEG. Get answers of them I can tell you seizures are not chemical based unfortunately drugs that are given are to treat chemicals, but e is nothing to do with that so we have an intolerance to drugs and don't always work.
I as a mum would nag them till I get the answer I want, my son nearly died because of miss diagnoses once with his kidneys. So get what you want to know write questions down as they come into your head take that with you and say you demand answers if not change consultant, there's good ones and bad one's around.
I hope this helps

Rhona - posted on 04/06/2010

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My daughter has had seizures for 19 years, but are so intermittent that she isn't on medication, the worst seizures are during the night, I have a baby alarm connected to her room and the receiver is next to my bed. 2 family cats and a dog have alerted me when there has been a problem [none have been trained to come and alert me]
The sleep mat sound wonderful and I am going to check them out.
Tina is your daughter having hormonal changes? At 10 she could be an early developer, perhaps something to discuss with her neurologist at the next appointment, my daughter has seizures because of intercranial pressure fluctulations because of her hydrocephalus.
I too was a nurse it dosen't make things any easier.

Maria - posted on 04/06/2010

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my son has sleeping seizures also , some nights im affraid to sleep as when he has them he cant call for help and this scares him as well, .

Katie - posted on 04/05/2010

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i have the same fear about my son. He is only 3 1/2 and has been on his meds for 2 yrs now. I've told his doc that i believe he's having them in his sleep bc he falls outta bed so much and all they did was do an MRI. But it didn't show anything, they claim his brain is exactly the way it should be. But they also put him to sleep so of course the seizures didn't show up. He actually got dx by the sleep eeg. He's mostly are the absentee seizures as well and its hard to know when he's having them during the day at times bc of his age. I guess it scares me the most bc i'm afraid i'm gonna wake up one morning and he's gonna be gone. It has happened to people before. If they have a bad enough seizure in their sleep it can kill them. I try to stay positive and pray for the best and for that not to ever happen. I wish i had an answer for u and myself about this. I just wanted to let u know that i can relate to u on some level w/things.

Aida Denisse - posted on 04/03/2010

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Hi,
It was interesting to read all the posts. This too is the first time I have heard of the mat so I will be looking into that. My daughter is 11 now but was diagnosed with petite partial complex seizures when she was 11 months old. She can have any where from a staring spell to a grand mal. Most of her seizures happen at night or early in the morning when she is waking up. It is scary and I have to admit I walk in and check on her when she sleeps at night. When my husband is not home I let her sleep with me in my bed. On nights that she is not sleeping well or she has already had a seizure during the day I sleep in her room.

Jamie - posted on 04/03/2010

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All but one of my 18 month old's seizures have been when she was asleep. Usually she screams or moans right before she has them. And like someone mentioned --- my mother's intuition seems to be dead on right before she has one. She's on Keppra now and hasn't had a seizures since being on the full dosage but we're still nervous. We moved her into bed with us when the pattern of her seizures increased.

Raels - posted on 04/02/2010

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YES i had the experience 22 yrs ago.I found our daughter in bed one morning ,she had left for angel city.... @ age of 5yrs 9mths...it was found she had a fit during the night.Eventhough drs said she had outgrown her seizures. From age of 6 mths she had them & went into comas....nothing like alarms were available then.! was also Epileptic since 12 yrs old .. but 17yrs ago after 26yrs of drs telling my parents i was attention seeking.I was lucky an experimental operation came avail.I went for it !st in ST VINCENTS MELB...I am Seizure free with no side affect JUST on 1 tablet lamital.i used to be on 22 tablets aday. So i have experienced the UPS N DOWNS of Epilepsy.I can relate to your fear.. but the alarm mat sounds great or a baby monitor might help also.

Melissa - posted on 03/31/2010

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First, let me say how very sorry that I am to hear that you too have a child that has a seizure disorder. I know, first-hand, what an awful feeling it is to have to watch your child suffer w/this. I have one child, a daughter. At the age of 7 she was diagnosed w/petite-mal seizures. I had NEVER heard of such a thing! All I knew was that there was something wrong w/my baby. She was having trouble in school; she couldn't concentrate; she was falling behind in school; just several things were "not right". So, they put her through a sleep-deprived EEG. This was at age 7. She was videoed at having several hundred "episodes" each hour of sleep. It was "UNREAL" to me. At this point, I was devastated! Lost, confused, angry. I didn't know what to do. They put her on Depakote at that time & she stayed on that for several years. But, unfortunately, it didn't help her at all. The neurologists that she had at the time, wasn't very supportive or helpful. And, as my daughter got older, she got more rebellious about the whole situation &, because of the side affects of the medication, she started refusing to take it. Finally, she had gotten to those "rebellious" teen years & she just wasn't going to go along w/it any longer. The medication made her gain ALOT of weight; caused her to stay tired continuously; she became moody; just a number of things. Well, I hate to admit it, but...my husband & I went along w/her & we stopped seeing the neurologist & stopped the medication. We didn't realize at the time, how serious the situation was or how dangerous her condition could have become. She continued to have the "starring" & "space-out spells" through out junior high & she struggled so hard w/school. The doctors had told us that the way things were w/her daily "life" was that she would be like "watching a movie" & she would catch the first part of it & then her seizure disorder kicked in & she would completely miss what was going on until the end of the movie & she would get to see what happened at the end. Only to leave her completely lost & in the dark. And, always so frustrated. Not only did it affect her in her school work, keeping her behind, causing her to have such a hard time catching on, but...it also caused her to have trouble w/her maturity development. My daughter is now 22yrs. old, but, her maturity level is on the scale of a 13-16 yr. old girl. Which, makes her even more confused, upset, angry, hurt, and...embarrassed. Struggling day to day. After seeing her starting to have more & more trouble, my husband & I decided that enough was enough & we took her to another neurologist. Doing more tests. Putting her through so much. Especially the medication changes. Trying to find the right medicine & dosage for her. Once again, after several batteries of testings & barrells of medications, & fights w/our daughter, she once again, was ready to "throw in the towel". We, instead, found another doctor & he was really good. He didn't make any empty promises upfront as the others did before & I think that is what helped her most. She did really well for quite some time, w/the seizure disorder, that is. She continued to have the space-out spells, but...they were becoming less & less. But, I don't know if it was because of the medication, the "condition", or just the way her "world" was always being turned upside down & inside out, but she developed a deep depression, panic disorder & nervous condition. But, after having all that to go through & handle, plus TEENAGE terror also...who wouldn't?? So...she went from 1 medication to 3 medicines, plus having to start therapy sessions. During this time, she was doing well, but...at the age of 18, she experienced her first grand-mal seizure. Out of nowhere. No warning signs. Never even thought she would go from the petite-mal to that. They had always told us that by that age, she would most probably be out-growing this! Well, we all felt as if our world was crumbling. And, I'm sure my daughter felt it more than any of us. From Memorial Day at the age of 18 until age 21, she had 7 major, grand-mal seizures. One experience just about "took her away from us" completely. On this particular day, she experienced not 1, but 2, grand-mal seizures. We had taken her to the E.R. after the first one, been there for hours...they released her...she was feeling better...had gotten hungry, her dad picked her up a personal pan pizza while we were being released & brought it back to her...we left the hospital, went into our hometown where I had left my vehicle & was planning on picking it up. The ambulance service was located next to where I had parked, so we were only seconds away from it. I had started to get out of the front seat where my husband was at when I heard that God-forsaken sound that she always makes when going into a full-blown attack & I turn to look at her only to see that she had just taken a bite of her pizza! When going into the seizure, the food was lodged in her throat, cutting off all air. My husband floors it to the ambulance service where they immediately start working w/my daughter. They were having a terrible time dislodging the food, and trying to get oxygen hooked up to her. She had already turned blue & white & lifeless. I just felt her life being sucked away. I thought I was going to lose my baby that day. They rushed her back to the E.R. where we were for what seemed eternity. That episode took her longer to recover from than any of the others. But, they said it was due to the trama. We still don't have concrete answers as to why our daughter went from the space-out spells that she experienced for about 13 yrs. to the full-blown episodes she experienced. But, there was a "mix-up" on one of her medications at the pharmacy, so...that is one possibility...can't be possitive. But, I'm like you...I would just like to know why? What causes them? What happens to change it after so long? Our daughter has gone almost a full year w/out another grand-mal seizure & we are so thankful. But...I am a mother....I can't help but worry constantly! She had her drivers license all of a week before they took them away. So...she hasn't been able to have the "normal" teenage life. She has had to miss out on so much. But, I get so frightened to think that they may give her the license back. What happens IF she's driving alone & she has an episode? Even a space out spell? She could be killed or hurt or hurt or kill someone else...there is just so much to worry about. Then, there's all the other stuff that isn't anywhere as "death-defying" to "us", but...to her...I mean, she still has to be on all that medicine....the weight-gain....the maturity level problem...struggling to learn...(and, I have to brag a little)...she graduated high school in 1995 & is in her 3rd. yr. of college! She has a struggle, but...she DOES it. On her OWN. She wants to be able to make something of herself & her life. But...she has never been able to get a job. No one will hire her. No one will give her a chance. In more than one way. She has trouble connecting w/people her own age. She doesn't have any problem w/children & old people, but...a close relationship w/a "friend"...nope. They keep their distance. Like they don't understand or dont want to fool w/her. Then, there's the "boyfriend" issues. She has never had a serious relationship. She has NO self-confidence.
I'm so sorry.I didn't mean to rattle on & on. It's just that to find someone that has a child w/the same problem...it just feels so nice to be able to talk to someone that KNOWS what I'm talking about. Understands what I'm saying. Can feel my pain & hurt for my child because they are experiencing the same thing.
But...I pray that your child does well. I will tell you this, but...the doctors probably have already. A schedule is VERY important for her to keep. A sleep schedule. Sleep is VERY important. And, too, where she is 10 yrs. old, she is probably getting ready to start puberty. That can be a contributing factor to the seizures. That can trigger seizures. A monthly cycle can cause a seizure to come on. Some girls & women only have a seizure during that time of month. Also, stress. It is important that she try to stay as stress free as possible. But...now, you know that is just about impossible. Especially at the age she is about to embark upon. I will keep her in my daily prayers. And, not only her, but her family also. A good support system is also very valuable. If there is ever anything that I can help you w/please contact me. Or, if you just need to talk or vent...I'll gladly listen. My e-mail address is Missy_W_84@hotmail.com. Like I said, contact me anytime you need someone to talk to. And...thank you for listening to me. May God bless you & yours. Sincerely, Missy

Gwendolyn - posted on 03/31/2010

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Epilepsy robs us good moms of a sense of control and peace of mind. My son still sleeps in our room because I just could not rest peacefully with him in his own room. He is 4 and taking trileptal. I pray very hard when I get anxious about him having episodes. I do not want him to see how much mommy is concerned about this at times. I agree with all the other rich responses you received. In my experience the break through episodes he has experienced directly correlated with his growth spurts. As for the night mares , some are natural in certain age groups ---which has been of no comfort to me. I started getting worried until my son told me about one of his nightmares and I found out they were watching a movie at his day care that scared him. Scooby Doo movies may be acceptable to most parents but we only allow our kids to watch educational, fun, very kid friendly, ghost and monster free tv. Doctors seem virtually unconcerned about him having seizures that last less than a minute. My heart does not care that they may not be harmful to him!!! I encourage you to try to focus on just being the great mom that you are rather than looking your child’s full time nurse and case manager. I KNOW it is not easy but you are not alone on this journey.

Atena - posted on 03/31/2010

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My daughter had her first seizure at 7 also and never had another until she was 9 and they started to come like once a week finally they got her on trileptol that help stop the seizures.but she still has had a few break through seizures. my daughter has her seizure in her sleep or when she is trying to get to sleep but she has what they call an orra and is able to let me know when she is about to have a seizure. But i still was worried about not being able to here her so i keep a baby monitor in her room when she is sleep and i keep it by me at all times maybe that can help you.

Aileen - posted on 03/30/2010

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my nine year old son has most of his seiaures at night nowadays....the only way i know is his bed is wet. he doesnt have that many with the medication but he does have a few. the only thing you can do is learn the early warning signs that occur before she has her seizures

Aileen - posted on 03/30/2010

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at various times seizures seem to be worse than others, most doctors shrug it off. i have noticed that these changes coincide with developmental stages in children. the effects arent scientifically proven its just an observation by a mother of two epileptic boys. and as for u being a nurse.....in this case u are a mother first so do not put ypurself down for not understanding a condition that eventhe experts cant agree on

Angela - posted on 03/29/2010

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R u in uk?.u can get free epilepsy monitors which go in the bed fro the muir maxwell trust. Get bk 2 me if ud like more details. Ang.x

Alicia - posted on 03/29/2010

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Hi, new here, first post, but not new to epilepsy. My son had his first seizure at 5 months (over 7 years ago). One way we know or suspect he has had a seizure in his sleep is that when he wakes up he has wet himself, vomited, or both. Of course, that's scary too, thinking that he could have choked on his vomit and we would not have known. The last seizure he had in his sleep I knew because I was sleeping next to him that night. It morphed into a night terror when the seizure was over which made me wonder whether some of his other night terrors followed seizures.

Courtney - posted on 03/29/2010

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My son has siezures in his sleep...And as soon as he is done he wakes up crying...I would recommend a siezure mat that you can put on the bed...ask your DR about one...there may be programs that can help you pay for it. good luck

Tina - posted on 03/29/2010

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thanks Angela i think a mat woould make me feel much better, she talks a lot in her sleepwhich usually wakes me up, but i tend to a heavy sleeper and want to make sure i know if she is having seizures in her sleep. You have been very helpful!!

Angela - posted on 03/29/2010

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We have an emfit alarm. From the link Annette put up ours is a D-1090 but the sensor part looks more like the picture underneath (the L-4060SL) Ours has a 7sec, 9sec, 13 sec and 20 sec seizure delay setting. We have it set at 13 sec as she is a wriggler in her sleep and we were getting false alarms. It also has a hyperventilation setting and a bed exit setting. I am in Australia and got it through the epilepsy association here but in America the emfit site says Austin is the place to get them.

Emfit Corp.
P.O. Box 342394
Austin, TX 78734
USA
Office: (512) 266-6950
Toll Free: (877) 32EMFIT
Fax: (512) 266-7203
Email: sales.us@emfit.com
Internet: www.emfit.com

I would highly recommend them to anyone. We truly believe it has saved our daughters life and let us sleep a little easier.

Tina, before we had the mat, I think mother's intuition was how I knew. She must have made a noise to stir me but I would always go to her and she would be in one. My husband would know nothing about it! It is very scary when you find them having them in their sleep because you don't know how long it's been going for. The mat will let you know though. They are worth every cent!

Annette - posted on 03/28/2010

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Our son has had the majority of his seizures during sleep. We have been looking at getting a seizure mat BUT I read that they can be set to notify of an event that lasts 30 seconds or longer, his last less than 30 seconds now. For this reason, he is sleeping on a bed next to us. Over the last few years, we have attuned ourselves to hearing a change in breathing, or him rolling over, it can create sleep disturbances for us but better that then the alternative. He has had 4 minute T/C in the past and who knows if that will happen again?

This is the one we are looking at:
http://www.emfit.com/en/care/products_ca...

Michelle - posted on 03/28/2010

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Hi my daughter is six years old and has had partial epilsey since she was two years old.She has had six seizures while she was asleep and four when she was just waking up and they are very scarey.So cool to hear about the seizure mat.Where can it be bought and how much does it cost.Thanks for telling us about it.

Tina - posted on 03/26/2010

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I havent ever heard of a seizure mat? where can one of these be found? Thanks for sharing, and i hope all goes well with you and your daughter :)

Angela - posted on 03/26/2010

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Our daughter (almost 5yrs) has seizures in her sleep and stops breathing which is really really scary. We have a seizure mat on her bed and it alerts us by alarming when she has a seizure at night. It has been invaluable and worth every single cent. My friends little girl was found passed away in bed Christmas morning 4 years ago after having a really bad seizure (this is rare but can happen). Unfortunately these seizure monitors weren't available here in Australia back then but is the reason i got one as soon as they were available here.



Our daughter sounds the opposite to yours. she started with tonic clonic and went on to develop partial complex and absence seizures. It appears to be somewhat common to develop different types of epilepsy.



Good luck with your daughter and inquire about a seizure mat if you are concerned about her at night time. I hope you will find the right drug for her and her seizures improve quickly. Take care of her and yourself xoxo

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