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I'm just wondering, apparently I scream while having a seizure, enough so that someone could think I was being murdered... Is this normal? I'd really like to know.
This is a guess, but my mother has seizures. She always cries and tenses up before she has them so I'm thinking her lungs tense up also and the air is squeezed out in the form of a loud cry. Because of this, I guess she does not breath while having a seizure. Her lips also turn blue, that's why I say that.
I have never asked a doctor, but that is only my guess.
Yes, my husband says I do scream at the beginning of the seizure, that's how it starts, then I shake etc...,very loud.
my husbands says i do that during my grandmals
Of friends/family stories the only timed I've screamed quite violently was a really bad fit that was brought on by no sleep over a 3 day period with toothache..
does anyone know if the more serious or even more awake we are during a seizure, makes us scream much more? ... or like everything else just a little bit random
I have a friend who has seizures. They have not been diagnosed as epileptic, doctors say she is the picture of health. What is strange is that she screams and shakes for 15 minutes straight. Now when i say scream, I mean scream so that you flinch away. Is this normal? And what could be causing the unexplained seizures?
I have question to ask couple times during my seizures I have made sound that sounded like goat and a screaming cry as well cause it's starting to really scare my family.I'm scared to go out any where that I'm have seizure I'm make a weird sound or just start just screaming.My father has heart problems and he one who pointed that I was having seizures then I went got help if wasn't for him I don't would by now but there just get worse.I doing more research found out I been having these since I was infant so I like if anyone else made has babababa sound as well I'm left in dark here.
Im glad someone posted this. I scream during my more severe complex sz's but could never figure out why. I don't say anything, it's not words, just pure sound coming out at the top of my lungs. My first sz ever it scared the living hell out of everyone. They were rushing me to the hospital in a car and I didn't know how to let them know I wasn't screaming out of pain or fear. Bizarre. Moaning is common though.
I scream 9 outta 10 times for 35 years. I had one of my co workers write me an email about exactly what she saw/heard from my seziure I had at work and I cried as I read it. My son & DH say that I look like I am dying...............how awful for them to have to keep going through this time & time again......my son did a phone video of me having a complex partial (for the doctor) and I saw it and kinda giggled a little and my son became angry with me and said "Mom! you have no idea how hard that is for us to go through!" I just can't feel what they feel....I get irritated with all of the "get your sleep Dawn" "Make sure you eat" (I have Diabetes) "Are you okay?" "Any Auras?" thats all I hear everyday. I KNOW they mean well and I couldn't ever ask for a more SUPPORTIVE LOVING family...but I just don't know how to connect to them. I never know what I do or how I look or sound...
I pray, not for myself, but for my family...that they never have to see it again...
I had a terrible seizure last month that scared my boyfriend and friends so damn much! I have never heard of anyone having such a seizure...
I was screaming at the top of my lungs and moaning! I got agressive and started hitting, biting, kicking my boyfriend! I said things I would never dream of saying. That was totaly out of character! I'm so confused! I have absolutely nomemory of the seizure.
I'm still looking for answers. my neurologist and psychiatrist said that i can start expecting seizures like these in the future, which scares me! I'm only 20 years old!
Mandy, mother of little Emma
My daughter Emma is 3 and a half and has complex partial epilepsy. She is on two drugs but her seizures are still very bad. Her seizures display as screaming! She only has them during sleep. She will suddenly start to scream and scream like she is being murdered and trash around and make cycling movements with her feet and sometimes hands. She often screams out MOMMY MOMMY MOMMY for a while and all the while I am with her saying, mommy is here, she has no idea of course. Then she seems to be partially aware sometimes and seems to look in my direction and scream GO AWAY GO AWAY GO AWAY, over and over with her arms outstretched and pupils dilated. These episodes can last from anything between 10 minutes and as long as 45 minutes on a bad night. She sometimes has 3 a night and has had up to 7 a night before she was diagnosed and before drugs. On drugs she has 3 at the most per night. We have not been able to manage it yet as she has only been on drugs for 6 months now. We are so desperate to get it managed as we feel so sorry for her. When she calms down she has no idea at all what has happened. She starts to yawn a lot when she is coming round and then the screaming stops. she can speak in a slurred way and when we ask her if she was crying she always says no and looks at us as if we are crazy.Does anyone out there have a child as young as mine with a similar thing? Any advice for me as I'm still so new at all this?
Mandy, Did you ever get an answer to your daughter's seizures? My teen is having a very similar pattern and current neuros are puzzled. - KC
I've been told before that I have screamed during my grand mal seizures but mostly I have been told that I moan really loud. I think that it is common for alot of people. Have a good day all. Candita
My 16 month old son has had a few episodes of what we now believe are seizures with screaming. He has not been diagnosed as having had a seizure yet but I fully believe what he had was a seizure. He will be asleep and after say like 2 to 3 hours of him falling asleep he starts screaming this blood crudling scream unlike anything I have ever heard him do before. His arms and legs are pulled in and we can't wake him when it happens. It lasts only about a minute maybe a minute and a half and almost when it's over his eyes will open but when you see them open it's not like he is controlling them opening it's like they open on their own. If you look at his eyes you can tell they are not focused on anything and that he doesn't seem to see you. Then once it's over he does I guess kind of come to but he looks around a few seconds like he is confused and then imeadiately falls into a very deep sleep like he is just exhausted beyond belief and then he sleeps the rest of the night and wakes up his normal self in the morning like nothing ever happened. I explained it all to our dr he doesn't see a pediatrician only our family dr but our family dr said it does sound like seizures to him and said that on Monday he wants to see us in his office to get us refered to a pediatric neurologist. They don't happen often but a few months ago is the first time he had them that i am aware of and he had 1 a night for 3 nights then he just had his most recent one about a week and a half to 2 eeks ago I don't remember the exact dates of any of them.I want to know if this sounds like a seizure to any of you.
Hi there, wondering if you ever got an answer to your child's terrible episodes. My 13 month old seems to be having an identical problem to what you explained. We are having trouble getting answers and most docs seem to be focusing on GI issues. But I cant help keep thinking these are siezures of some kind. I hope everything is ok with your little one, if you hav ea minute would you mind updating me. Maybe it will help. Thanks a million.
HI.I WANTED TO COMMENT ON YOUR CHILDS DOCTORS PUSHING WHATS HAPPENING TO YOUR CHILD ON G.I EXCUSES. WE WENT YTHROUGH THE SAME THING WITH OUR DAUGHTER, SHE WAS HAVING EPISODES THAT LOOKED LIKE SEIZURES 3 IN A HALF YEARS AGO AND THE DOCTORS REFERRED US TO A G.I. DOCTOR THAT DIAGNOSED THESE EPISODES AS BEING ACID REFLUX. WE FAULT THEM TOOTH AND NAIL THAT THESE THINGS WERE INFANTILE SPASMS, NO-ONE WOULD LISTEN. 22 MONTHS LATER WE FOUND OUT THATS JUST WHAT THEY WERE;INFANTILE SPASMS.. NOW SHES 4-YEARS OLD AND HAS DEVELOPED LENNOX-GASTOUT SYNDROME AND SHES BEEN EVALUATED AS BEING ON A THREE-MONTH OLD LEVEL. PLEASE DONT LET THIS HAPPEN TO YOUR CHILD,ONLY YOU KNOW TRULY WHATS GOING ON WITH YOUR DAUGHTER AND YOU HAVE TO BE THEIR ADVOCATE, AND IF THEY WONT LISTEN, KEEP PUSHING AND GET SECOND OPINIONS IF NECCASARY AND DOCUMENT EVERYTHING...GOOD LUCK..
I have been known to yell/howl like a wild animal right before I collapse. I asked my neurologist and he said that it was the air escaping out of my throat as it was stiffening shut. This last one I had, a customer said that I yelled "Oh my god" as I hit the counter top.
I just happen to look at this and the first thing that came to mind was a grand mal seizure. I've had them since an infant and let me tell you. Pediatricians are not trained to know what to look for. You need to see someone who is which means go see a neurologist and have your child tested.
It took years to get the right diagnosis and it was a matter of seeing a neurologist who knew what to look for.
Thanks for the note. We are seeing a nuerologist on Monday. What kind of testing allowed for a diagnosis? We had an EEG a few months ago and it was normal and then our ped. ruled out seizures.
Wondering if you dont mind elaborating a littlemore about your infancy grand mal seizures? Our son seems to wake up in a high pitched blood blood curdeling screetch, while stiff and eyes rolled back in his head. This lasts a few minutes and then he cries for about 30 -45 minutes before falling back to sleep.
Do you notice if you have any triggers? Dehydration? Overstimulation? Low glucose??
Just trying to sort all of this out and I really appreciate any insight - since you have been living it for so long.
my son has complex partials and does the same thing, starts off with a blood curtling scream, and then will sometimes his head and right arm go to the right with eye deviation also to the right. I have often wondered about testing his glucose levels as well as dehydration as I've heard there may be a connection to nocuturnal seizures. His seizures are almost always at night, either an hour after falling asleep or just before waking. He's had left temp. lobe surgery (3 yrs ago) which reduced the number of seizures but they are starting to increase. Sleep dep., stress and barometric pressure seem to be triggers for him. It is somewhat "comforting" to know he isn't the only one who has this fearful scream, it is very distressing and I just hate to see him going through this, although he doesn't remember it, he does sometimes feel scared and/or gets that "rush" sensation throughout the day and feels off.
Have you since been able to get your sons seizures controlled with medication? My son is on tegretol and lamictal.
Thank you so much for posting this! My lil one was diagnosed with a cortical dysplasia that causes her siezures and just like your son her siezures are always during sleep, useally 30 minutes after falling asleep. Today was the first episode ever where she was totally awake (for at least an hour) & playing before having one. She just randomly started screaming, kinda like a night terror, and looked dazed and scared. She stopped screming after about 30 sec but was not able to focus or articulate for 2 additional minutes. Once she started to come out of it she stated she was sleepy & hungry, both her norms when she comes out of a seizure. Her normal seizures are very unlike this, normally she loses ability to speak/move, vomits, troubles breathing due to excess saliva, sometimes eyes will go to the right with a slight chewlike movement of the mouth with the seizure lasting last 15-30 minutes (rare for seizures which is why we administer Diazepam at the onset of one). With the exception of today's episode, Keppra has really kept the seizures at bay and most likely just need an adjustment due to her recent growth spurt. Hope your son is doing well, and thank you again for posting, helped calm my nerves knowing that this epsiode is not all that rare.
I understand how it can be hard trying to sort it all out. I was thinking about this last night and trying to recall some of the issues I went through as a child. A little sketchy but I remember bits and pieces.
Let's see, when I was very young the grand mals started from the DTP shot because it caused the high fever to occur. I was born in '68 and I to be honest, I really don't know what age I was when that vaccine was given to me as I don't have kids myself. Anyway. What I am aware of is the vaccine issue at the time was causing a big problem because of how it was given because it had to be given in three shots instead of one; apparently it was something the FDA did at the time to try and speed up the process of "making the vaccinations better" but actually it made them worse. They were fixed quickly after that but at any rate, the high fever which caused the scar is in turn what started the epilepsy rolling.
I recall my Mom speaking of the few times while I was at that infant stage she knew something was wrong because I would make a noise and it was different. I've always heard the saying, mother's know the tone of their children's voices when something is wrong. I suppose she was aware when something was about to happen. I grew up with grand mals into the age of about 10 I think. Doctors said nothing came back on the chart, I was a healthy child faking and wanted attention. That was the first time I saw Mom go into a rage. WOW!
I can't remember who all I was sent to but I know there were a few of them. I think that one of them was even a psychiatrist because they tried saying it was all in my head. Well yes, epilepsy is in your head. The doctor realized what he was dealing with when I had a seizure in his office and said he couldn't treat me. *sigh* Onto another one. We finally managed to find a neurologist from a particular childrens hospital that took the case. With his knowledge and science, the grand mals turn into fewer complex partials.
Yes, there were issues of triggers such as the need of sleep and eating correctly. At that time, if I had too much sugar it could be a problem so we had limits with it. In my younger pre-teen days, the flickering lights did cause issues so that was something we had to always watch.
As I grew into a teenager, the lights started to not become so much of a problem. I do know that heat and humidity were always an enemy to me. If I got a bit overheated, that could cause something so I stayed in an air conditioned room or by a fan more for security than for comfort. Dressing in loose clothing in summer was always the key as well.
As for testing? I had an EEG, a CAT Scan, an MRI, and video monitoring done as well. It all depends on what is needed. In my experience the EEG does not always show and it required something more intense to see what is happening like an MRI. If you ever do need to go through something like this, they do have MRIs that can be done openly instead of closed if your child fears closed areas.
I wish you the best at finding the cause for this. Will keep you both in my thoughts!
Thanks for taking the time to write about your experiences. At this point, the t riggers are what I am the most interested in.... ad I truly think my sons are triggered by something, as 3 out of the 4 he has had have been after a day at an amusement park. Dehydration? Heat? Exhaustion? I just never put it all togethe until now. We will know more on Monday, we are going to a childrens hospital. Looking forward to it and dreading it all at the same time. Thanks again. Much appreciated. Hope you are doing well now and have figured out a way to manage through everything.
My son's trigger is an overload of chemicals. We are currently getting carpet out of our home and eating organic, as well as eliminating a lot of plastic to store foods. You could also seal your carpets with a product called AFM safecoat ( I think that is it), and that will help a lot too.
Maybe take a look at your home environment. Carpet is horribly toxic, as well as some furniture and bedding. I never knew any of this before my son's problems, and it has made a world of difference. Carpet fumes go into the air more on hot and humid days, and if the house has been closed up, they accumulate. Carpet in a basement is sure to bring a mold problem, which used to almost ALWAYS bring on a seizure for my son. Now our basement is clean and dry, so he doesn't have a problem down there.
I apologize if this sounds wacky, but I thought I would "put it out there" so one child would suffer less. Changing the environment for your child will do wonders.
I did this one time at the ER during my seizure and I even scared myself. I'm sure I scared everyone there. I'm totally aware during my seizures. I have never screamed that loud in my entire life and I'm 46 years old. It went on for what seemed liked ages. So I'm so happy to hear I'm not the only one that did this :)