Seizures During Sleep
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UPDATED: Wed, 02/11/2009 - 7:16pm
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Mornin...
Seizures During Sleep
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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.
By Mornin... at Wed, 02/11/2009 - 7:16pm | 722 views | 67 comments
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Recent Comments on this Discussion
Please do not stop your medication unless you tell your doctor and see if there is something you could take with less side effects. My son's seizures are almost always at night during sleep and have been that for about 10 years. What has become very clear to him is NO drugs, No alcohol, or anything else that alters his body chemistry. You will only have more seizures if you continue any of them. They lower your seizure threshold and thus a seizure will break through. He does not use caffeine or cigarettes either. Has given up all in his attempt to control his seizures. You will learn you cannot control seizures. That is part of what is learned. My son thought the same thing. The key to reducing their frequency is adequate and very consistent sleep patterns, lots of exercise, yoga if you can, eating good, and no outside chemicals to your body. It is not a lot of fun, but neither are those seizures. He has torn up his room, etc. and is on two medications. He has learned what possibly can bring them on and is better prepared at night for the seizure. He does wear a mouthpiece but not all doctors want this. He bites his tongue and this has helped. If there is any way, stress reduction is very important as well. Most importantly, communicate with your doctor and stay away from alcohol. My best to you, C
My husband (66) had a traumatic head injury 24 years ago followed by a stroke 14 years ago. His first sz were what we called absence type and they were seldom. He had his first big one at night two years ago and has had 5 since then, always at night and with a long hangover period after. We've never been able to figure what could be a trigger. He is on tegretol 200mg and neurontin 100mg 3xday and the doc has said he can switch to Keppra. I'm kind of reluctant after hearing all the negative reports about personality changes and meanness with keppra, but it seems like each sz makes it harder for him to get back to what passes for normal for him. He has left hemiplegia and cognitive issues from the head injury. His memory problems are worse after each sz.
I used to think that I could control mine if I got enough sleep, which does help...some, but it definitely is not something to rely on. I'm on Keppra, had some early issues with feeling mentally slow, some coordination issues, sleepiness, and some dizziness. This made me think of dropping the medicine, but after a few weeks my body got used to it, and all the side effects have disappeared. I must say that I am a lot more confident waking up in the morning...my wife still wakes me from time to time at 3 or 4 in the morning asking me if I took my medicine...I think I'm still jerking while sleeping. We've recently upped the dose at night time, which makes me sleepy but it's night and I'm going to be sleeping anyway. If you need to stay up late just take your medicine late.
I just signed up today, and have never written about my seizures. It first started when I was 20 now 49. For the past several years my seizures have only been at night. It varies, sometimes right after going to bed -sometimes 4-5 AM. I am however always asleep. I do sometimes have an 'aura' that feels like a tightness in my throat. However, what is always a constant is the feeling when I get up and the sore tongue I have because I bite it so frequently and hard. Many mornings I wake up and my mouth is full of blood and my tongue is so swollen I can barely speak. My wife now writes down each seizure in a log so we can address them when we go back to the doc. Some weeks it is every night. I currently take Tegretol XR and levetiracetam vaying doses for AM and PM. Unfortunately my wife has noted real mood changes, I get angry quickly. So this too needs to be addressed. There is not even a trade off, I am always tired, moody now and still have seizures. I don't necessarily expect miracles but I do need some answers and some control. I know this does not really help anyone in the sense of finding an answer but it is important that we continue to speak up so others know they are not alone.
You are not alone. Our son has had almost all of your issues. He is on Lamictal and Zonigram which have lessened the severity somewhat. Some meds made his very irritable and even rage. We had to switch from Keppra. That does not happen to all taking it but irritability is really hard on everyone. He is now aware and we talk to him when he is extremely irritable and leave him alone. He is in counseling which really helps and has been for years. It is really important if you do not have someone to talk to I highly recommend this. Do to the terrible damage to his tongue he started wearing a mouth guard which has really helped with biting his tongue and mouth. Not all doctors want their patients to wear these because they fear they could choke but he choses because of the pain he has when he wakes with his tongue hurt so bad. Epilepsy is so undersupported and such a horrible condition, my heart bleeds for all of you, we as a family all feel the pain every time a seizure occurs with our loved one. It has come to the point that surgery is the option we are considering but it will be his decision. Talk to your doctor soon about the irritability, it has terrible effects on personal relationships, we know. C
I usually waken up & my face is all twisted & thats how i know i have had a seizure during the nite , or else i have bitten my mouth , i never used to get seizures at nite alot then a year or so ago i started taking them regular and now i am taking them a few times a week and when i waken i am shattered even if i have had 10-11 hours sleep i am still shattered what has upset me alot is that i feel my neuro is not taking me seriously even though i have uncontrollable epilepsy with the amount of nite seizures i have been taking it is tireing the following day out of me i feel lost but as i say life goes on and chin up xxx julie xxx
Hi, my name is Stephanie and I'm brand new to this forum. I had my first tonic-clonic seizure a year ago, and have had two more since--most recently, this morning. Bit my tongue and am sore all over, and spacey, but at least I've never wet the bed!
All three seizures occurred in the early morning some hours before I'd usually wake up. I'm wondering if there's a stress connection, because this last year has been rough--I've been unemployed for 9 months, just had an unsuccessful job interview, and I've been sleeping poorly the last week. I don't drink or smoke and there's no history of epilepsy in my family. Back to the doctor for me.
I'm worried about losing my driver's license. Maybe my doc will make allowances for the fact that I only seem to have them while sleeping.
Stepha,
I sympathize with you. I had my first seizure at your age, too. You will probably lose your license, but depending on the state you are in, it'll only be for a year (if you're seizure free) up to 3 years. When it happened to me, I had lucky moved out of one state into another and now my new home is screwing around with me (and I've been seizure free for 5 years!)
Anyway, have you spoken to MD about surgery? It was successful for me. Of course I didn't like being bald, but what woman does? Please let me know, I'm writing a story about women and epilepsy and the surgery and in particular women in the their 20s and 30s.
Peace,
Julie
I was reading your reply about nocturnal seizures and your case sounds exactly like mine except my doctor is trying his best to do what needs to be done. I still don't know why I have began having seizures at 25 now 26 years old. I have no family history, no drinking or drug addiction nor have I ever had any type of head trauma? I have been thru a lot of testing. Have you had a MRI done? Please let me hear back from you. Jessica
Hi, I'm Rob. New here. I'm 47, and have had nocturnal seizures since I was 18. I haven't had one for a few years now, but wouldn't prescribe my form of seizure prevention for anyone. I haven't seen a doctor for about 8 years and am living in Mexico (I'm from Chicago). I'm taking 1 gram (1000 mg) of carbamazapine every night befor I go to bed.
My seizures come on at about 5/5:30 in the morning. I usually go to bed around 10:30/11 pm. I do have one comment about your medication though. Ask your doctor (or research it yourself) about Dilantin and it's history of messing up people's mouths. I had to have very painful surgery years ago, which did not really fix the problem. The problem is that Dilantin makes your gums very puffy. It created 11 mm deep pockets between my gums and teeth (they should be 3). Food got trapped and rotted a lot of the bone. My gums had to surgically cut front and back, top and bottom, food removed, and bone replaced. 62 stitches!!! Veryvery painful. Check into it befor it's too late. I was on Dilantin for about 10 years.
There is so much to report/discuss, i couldn't possibly do it all right here, look for more from me in the future. I just wanted to warn you about Dilantin.
Rob,
I was on Dilantin once (along with Depakote). I ended up checking myself in to a Psychiatric Hospital one weekend because the stuff was making me suicidal. I think the safest thing I was ever one was Tegretol XR, bad for the appetite and weight, but if you're a woman, you aren't going to complain. Also, if you take Dilantin, take Vitamin D, the stuff is bad for the bones.
Peace,
Julie
I had 4 seizures during the day there peti mal.. The rest of my seizures have been noctural petimal seizures. The drs have no answers as to why I have them. They started at age 35 it could be due to the migarianes it could be due to my age and the changes women go through. They do feel it has something to do with lack of sleep and sleep depravation so I try and get plenty of sleep. I started out on 1750mg of depakote and had breakthrough seizures and now Im on 100mg of topamax and have had no seizures for 8 yrs I have been on this for 2 yrs before this I was on tegretol for 6yrs but that depleated my sodium levels due to my gastric bypass surgery. To me noctural seizures are scary. The only way you know if you have had one is if the house is a mess
Kathy
Interestly enough, I had no histiory of seizures until I started taking a low dose Topamax for Migraines. Then out of nowhere I started having nocturnal seizures, 3-4 times a week for serveral months, now we think I only have them once or twice a month( because I usually wake up) but who knows.
dazlnangelfsh:
Thank you for sharing your experience with nocturnal seizures. I have not been diagnosed yet; I am in the process of being referred to a specialist & having testing done (EEG). I started having seizure like episodes after a spinal cord injury-most of the them occuring in the evening or during the night. I was put on Topomax around that time for migriaine treatment. I will certainly bring this up with my doctor now.
I have what we now believe to be seizures, after waking in the morning. I suspect I might have them during the night as well. My heart rate climbs as does my blood pressure, I get dizzy and feel like I have to lie down. I get a strong warm sensation going up my chest and sometimes I have numbness in different parts of my body. After the first couple events I was diagnosed with sleep hypopnea, which is breathing too shallow and I wasn't getting enough oxygen. I started using oxygen at night but I kept having episodes. I then used cpap with oxygen and still had episodes. Now we have a diganosis from my abnormal sleep-deprived EEG and I just started lamictal. I believe the insult to my brain at night from not enough oxygen caused a problem in my brain to cause the events I had. The last event, I was exhausted and slept for two days.
So more sleep is better and quicking bad drugs and alcohol too, but it's possible that getting enough sleep may not fix the seizure problem. In fact, if you have many years of substance abuse you may have additional damage to your brain that is contributing to the seizures. Meds could be the best way to go.
Good luck!
Patti, RN
Hey all my name is Brandi and I am 25. I have them in my sleep and I when I wake up I feel sleepy and confused and I when i was on my menstural cycle and I had them what seemed liked nonstop but I just made the connecttion til yesterday . I am on dilatin and keepra. I know it has stressed my fiancee out I can tell but he deals with wonderfully but at the same time I know its hard for him to see me have them. If anyone ever wants to talk ya'll can e-mail me at rolltideangel08@aol.com
All of you have a blessed day
I also get my seizures during sleep. I think I know why. I think the breathing way is not "clean", I get too little oxygen. Now the doctor is going to have me in examination, if this is right. May be I go in surgery, through nose, I still don't know, but I hope the doctor can help, because it is no good to get bad seizures in bed eather, and fall from the bed, I often have hurt myself. Greetings to you from Iceland Vigdís Ágústsdóttir
Hi. I'm 39 and was diagnosed with TC nocturnal seizures at the age of 2. I've discovered the same thing--sleep, proper nutrition, and no alcohol have kept my seizures somewhat controlled. I take a Lamictal, Keppra combo--it's has controlled my seizures the best. Unfortunately, I still experience the out-of-itness a bit the day after a seizure. But on the up side, I am a teacher, can drive, have two children and a loving husband. Things will work out for you I'm sure. I'm curious--do your seizures get worse before and during your menstrual cycle?
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
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.
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.
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!!!
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.
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!
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
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!
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
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
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
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.
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.
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.
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...
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.
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.
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.
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.
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
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.
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.
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.
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!!
You are like you didn't wake up in a puddle of pee
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.
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.
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!
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.
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.
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
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?