This is my first time to post a message and I'm hoping someone can provide me with some insight. I thank you, in advance, for any information you can offer.
My 17 yr old daughter started having grand mal seizures when she was 14. They occur within the first 10 minutes of waking. Seizure frequency has been 3-4 a year. She is not on medication. She manages her condition with an herbal regimen and a strict sleep schedule. She is monitored periodically by her doctor who is in agreement with the approach we are taking.
She had a seizure today and something happened that has never happened before. At the onset of her seizure she screamed. Has anyone heard of that before?
Normally when she has a seizure, she just freezes before collapsing to the floor and convulsions beginning. This scream was not just a moan nor was it the groaning sound commonly heard during a seizure. This scream was load enough to be heard 2 rooms away in the house.
My concern is that this has never happened before and it makes me wonder if she was experiencing some type of pain previously not experienced or if she simply lost control of her voice and it was an outburst of some type.
When her convulsions stopped, she behaved as she always does so nothing seemed unusual there. She is still sleeping it off right now so I haven't had a chance to talk with her to see if she remembers anything. Normally she doesn't notice and/or remember anything just prior to the seizure and will typically have no recall of having had one. Unlike some people who get a sensation near the onset of a seizure, she has never seemed to experience that. This scream, however, has me disturbed.
Can anyone give me any information? It really has me worried. Thank you so much for listening and for responding with any helpful information you have to offer.
Welcome to healthboards.. it could have been a momentary loss of her voice not real sure.. however, she may be experincing an aura she does not remember after her seizure.. some auras actually do hurt momentarily. Alot of us experience different things each time we have a seizure. And alot of those things we simply don't remember but are told to us by a family member. It's real hard to make light of it when we don't experience that particular thing for our selves. When she wakes just ask if she experienced anything new this time such as pain or a certain feeling that scared her. please let us know how she is doing
KoKo--- thank you so much for responding to me. It's interesting that you mentioned an aura might scare someone because her scream sounded like someone who was frightened or in pain. Your swift reply is reassuring that there are people out there willing to help. Thank you again -- Mom2Joy
I also have the grandmal seizure during sleep.... normally right as I am waking from sleep .....or somewhere around there. I also scream right before the seizure starts, not sure why exactly. I figured it was my way to say hey someone get their butt in here and watch me.
or possibly an aura you just don't remember? in reality a seizure is frightning to watch.. you never know what goes on in our little minds right before . I find the mind very fascinating and trying to figure out what happens before a seizure fascinating. Half the time I am alone so I never find out. ok ok I am rambling.........
I have read of outbursts of laughter, crying, many things before or as a seizure. When my child had her only complex partial, she had a very frightened look on her face, responded to us tickling her and other things, but could not talk or make any sound. It's all very strange. I'm very curious as to why your daughter is not on medication with her seizure frequency. What type of herbal remedy are you trying? Have you tried a hypoglycemic diet? See my previous post under "See if this helps". My daughter is currently on no meds. The diet is working great for her. She has gone from seizures every 7-10 days to once a month. If she has too big of a gap between meals, usually that's when a seizure will follow the next day. What type of epilepsy has your daughter been diagnosed with? I continue to pray for everyone.
Thanks so much to the three of you that responded. Koko, you are really wonderful to respond on this board so frequently. I know that the participants greatly appreciate your efforts.
Bleubird....I read your response to my daughter and it made her laugh as she had said basically the same thing about her scream. Although she has no memory of it whatsoever she had said that perhaps on a subconscious level it was her way of saying "somebody get in here."
Iazoo...thank you for the suggestion to go read your previous posting on diet. I will definitely do that and will get back to you.
Thanks again to all of you. It's very encouraging to know that this place exists and that you can talk to people who know first-hand what you're going through.
Iazoo -- thank you for the information you posted regarding diet. My daughter's seizures are most strongly triggered by two things...interruption in regular sleep patterns, i.e., less than 8 hours sleep and/or large change in sleep pattern...for example, going to bed at 1:00 am and getting up at 9 am vs. her normal 10 PM to 6:30 AM sleep schedule, coupled with her hormonal cycle. Hormones are her other major trigger. If she is just a few days prior to her menstrual cycle and she doesn't get enough sleep and/or regular sleep, that puts her at extremely high risk for a seizure.
We have never had our daughter on meds for her seizures. She has always been on an herbal regimen. We are an extremely health conscious household, having had a previous experience with our other child, our son who was sick for the first 6 1/2 years of his life with a serious and chronic intestinal disorder. He was under traditionl medical treatment for all those years, continued to get progressively worse (his condition in it's most extreme case could result in death) and no matter what treatment the doctors pursued his condition didn't improve. When we discovered the world of herbs his health was immediately restored and he's been fine ever since. He's now 14 years old.
So...when seizures began to occur for my daughter, we met with the neuro, had all the tests done, received a prescription for Lamictal (which she never took) and went home to research the potential side effects. After that research we decided that the potential benefits were not worth the potential risks since our daughter's seizures are only a few a year and they occur upon wakening which makes them relatively easy to manage and minimally disruptive to her life.
Her herbal regimen is extensive and focuses primarily on keeping her body cleansed and in-balance from a hormonal perspective. She has never had a seizure on this regimen as long as she has had proper sleep and that's now been 3 years. The only seizures she's had during that time have been triggered by sleep deprivation. Therefore, we feel confident that what we're doing is working for her and her pediatrition believes that there's a strong likelihood that once her hormones have stabilized in her early 20's that her seizures may subside. Needless to say, that's the desired outcome for which we're all hopeful.
Mom2Joy - Sorry to bother you again, but I also would like to know that herbal treatment you are using and what type of practioner recommended it to you. Also, since you have had such good seizure control would love to know what your daughter eats and how often. Have you tried taking her to a chiropractor to help balance out her hormones? I personally had only 3 cycles a year for 12 years, went to a chiro for a headache, he told me my hormones were out of balance. I said, Yeah, right, (thought this was quackery at the time). He adjusted me and I've been completely regular for the next 10 years! Am presently taking my child to the chiro, she does have lots of trouble with the top vertebra in her neck, pinched nerve there and very often gets shooting pains on the left side of her head. There posters show that the top vertebra also has something to do with epilepsy. She may have injured her neck at some point in gymnastics, but has an extremely high tolerance level for pain, and rarely complains unless its severe. Hoping this will help her seizures. We decided this week to take her out of the gymnastics as she went seizure free this summer when she was out. Seizures started back when her classes started back. Where do your daughters seizures originate from and do you have any idea of the cause? Any help is greatly appreciated. Thanks, lazoo
Koko and Iazoo --- I am happy to provide information on what we are doing for our daughter, Joy, to manage her condition naturally vs. chemically. However, it must be understood by anyone who reads this that although it's working beautifully for her, that does not mean that it would work the same for everyone.
As a recap for anyone who might "cut and paste" this info elsewhere, Joy's seizures (gran mal) began when she was 14. She only has 3-4 a year and they only occur upon waking...within the first 10 minutes of being awake. They appear to be related to two main triggers...sleep deprivation and her hormonal cycle. One other trigger "suspect" is overstimulation which can occur in the form of high stress or high excitement.
With all that said...here's what we do...
She takes a packet each day that contains a number of vitamin, mineral and herbal supplements (including soy) designed specifically to support the needs of the female body and keep it in balance. This is just a generic, basic health type vitamin/mineral pack that any woman might choose to use, epileptic or not.
She takes a fiber product each day as well as an Aloe Vera capsule to keep her instestinal system operating properly.
She takes one capsule a day of Gotu Kola (370 mg):
2 Lecithin capsules made from soybeans (1040 mg;
3 capsules/day of Essential Fatty Acids (contains flax seed oil, borage seed oil, black currant seed oil and evening primrose seed oil)...EFAs are hormonal precursors;
She takes 1 capsule/day of a vitamin/herbal combination called Stress Aid that combines Vitamin C some of the B complex vitamins as well as thiamin and folic acid as well as the following herbs...Hops, Scullcap, Valerian Root,Kava Kava and Schzindra Fruit...all of this is in one capsule;
She takes a calcium/magnesium supplement that provides her with 1000 mg of calcium and 400 mg of magnesium daily;
She takes 1 tablet daily of spirulina plantensis (675 mg)called Chloroplasma which serves as support for her immune system.
She takes 2 wild yam capsules daily to further assist with hormonal balance as we suspect she may be estrogen dominant.
Upon waking each morning, she drinks a glass of water before getting out of bed. Stays in bed a few minutes to become fully awake and then gets up and eats breakfast right away.
Yes...Joy has gone to the chiropractor on many occasions. He currently has her taking a homeopathic to remove mercury from her system as she tested at an elevated level. Although she has no mercury fillings in her mouth, in her early years she received some initial vaccinations which, as most of us know, can create a mercury build up in some people's bodies. He has found some instances of high mercury levels in seizure patients. She has only just begun this process so it's a little too early for us to tell what it's impact will be.
We have Joy adjusted periodically. As to the cause of her seizures...who knows. Our best guess is a hormonal imbalance, however, I can't help but wonder if she didn't receive some type of damage whe she was born. She had a very difficult delivery. The doctor couldn't pull her out of the birth canal, attempted to use the suction cup approach....that didn't work, had to finally resort to forceps delivery as we were losing her. I can't prove that there is a connection there, but I certainly have my suspicions.
Last, but not least, Joy has to closely monitor her sleep. She has to get 8 hours a night and it needs to be in a somewhat regular pattern, i.e., going to bed at about the same time each night and getting up at about the same time each morning.
Joy's health team has consisted of her pediatrician, a neuro (whom we no longer see), several master herbalists whom we have known and trusted for years as well as her chiropractor.
I hope by sharing this information that it can be of benefit to someone else. We, just like everyone else, take this one day at a time and hope for the best.
i started writing a reply and don't know what happened! so if this is duplicated..sorry!
my daughter started having grand mals about 18 months ago. we sometimes go almost 6 months of not having one. she is currently taking keppra and trileptal. she had a seizure last sunday, which i attibute to sleep deprivation. she has had all of her seizures in the morning (2 in the shower). the neurologist has it linked to sleep deprivation. i guess my question is: if she's taking heavy dosages of meds and still has seizures, what are the benefits of the meds? we see the neuro today. she is definitely being taking off of the keppra. her mood swings and depression have gotten extremely bad since her meds were increased due to complex partial seizures during june. i believe lazoo told me about the manifestation time of keppra and she fits that criteria.
my daughter is also a vegetarian...does anyone think this is linked?
one more question: do you think i should have her sleep deprived eeg run again? the first one about a year ago came back fine. my thought pattern is that i keep her up all night and not allow her to sleep at all. the first test she had, i believe, ample enough sleep for her.
i'm really starting to struggle with her mood swings/depression. she starts seeing a pyschologist tomorrow.
Nkrett -- I can't really answer your question regarding meds as my daughter isn't on any. However, I do know that mood swings and depression are side effects of some meds. Have you looked up the potential side effects of the meds your daughter is taking in the Physician's Desk Reference? Merck has an on-line PDR that you may find to me helpful. It wouldn't surprise me if mood swings and depression are listed as side effects. It's worth a look. Your daughter's challenges may have nothing to do with needing a psychiatrist and more to do with a reaction to the meds. Just an idea. I wish the best for you and your daughter.
Nkrett -- here's another thought for you...if your daughter's seizures take place in the mornings, you may want to consider having her start taking her showers at night vs. in the mornings. It could significantly reduce the danger to her, not only from falling but also to avoid the risk of drowning. Changes in habit are not easy for people, but it's worth it to avoid harmful risk.
Nkrett - There are other web sites where people discuss what Keppra does to their children's personalities. Try the epilepsy foundation. Makes you wonder what it's doing on the inside. My daughter wasn't eating much meat right before she was diagnosed. In retro-spect do not feel she was getting enough protein especially during a growing spurt. Have read in many places that E is caused by a shortage of B vitamins. Best place to get them is in meat. Most can be cooked away into the water with vegetables. My daughter was not on vitamins nor did she eat any fortified cereal in the few months before her diagnosis. B vitamins, have read, help the body to handle carbohydrates. Without causes serious blood sugar swings. She is now on vitamins. I keep a can of almonds by her bed and make sure she has some just as soon as she wakes up. Have moved her feeding schedule to every other hour to see if that helps. Noticed on the days she had seizures, she also had a gap in her eating, which could have allowed her blood sugar to drop. Why don't the docs have a database to record drug reactions nation or worldwide. That would be the best way to see if their drugs are helping or harming. I've gained so much more knowledge from here that from any of the "experts". Perhaps if they just read people's comments, they would learn more, because they sure don't want you to take up too much of their time asking questions and don't seem to have any answers anyway. Sorry, frustrated.
Nkrett - Just another ? for you. Have read on other sites that some of the children on Keppra also experience episodes of funny breathing. Has this happened to your daughter? Kind of like hyper-ventilating? How old is your daughter again? What type of E has she been diagnosed with?
thanks for all of the replies and help! my daughter 16 (will be 17 in february). i don't think the neuro has ever actually given her epilepsy a name...his thoughts are that her seizures start in the temporal lobe, hence putting her on keppra. we saw him yesterday and told him about the depression/mood swings. funny you mentioned the "hyperventilating"...a week ago at school she had an "episode" after speaking with her advisor about a class she was taking. by the time i got to school she was pretty much hysterical and started to hyperventilate.
we've decided to wean her off of the keppra and the next drug of choice is lamictal. i haven't even started the research on that one yet. anyone hear anything positive for a change?
question for lazoo...would a vitamin B supplement be helpful to her since she is a vegetarian? she takes a multivitamin heavy in iron and vit. C currently. a friend of mine mentioned an acquaintance of hers having depression episodes linked to a B12 defiency. any truth to this?
All B vitamins are linked to depression from what I read as well as several minerals, forget which ones specifically. How long has she been a veg? Does she have any auras before her seizures? My child's were in her stomach which is what made her so hard to diagnosis. All kids complain of stomach aches from time to time. Doesn't it make you angry the docs never said anything about the breathing? Who's keeping track of the meds and thus trying to improve them? How often does she eat? Eating very frequently really helped my daughter. It was hard at first, but now she knows she has to keep something on her stomach at all times. Look up hypoglycemic diet. By the way, how much vit A is your daughter getting in her vitamins? Vit E has worked in studies to help reduce scar tissue from the seizures. I try to feed my daughter almonds as a snack thru out the day. She also gets some in her vit. But, it is a fat--soluble vit so don't get too much.
Hi - is so interesting to read about this "scream with seizure". My 17year old daughter is mentally handicapped so can't give me any info. but sometimes she does scream and it makes me crazy thinking "is she in pain" - why is this seizure so different. It doesn't always happen....sometimes it is a moan. Sometimes she has a laughing spell or a crying spell before a seizure. It is always changing. On the up side - it alerts me to her seizures and I can try and keep her safe much quicker, which is always an issue.........she is on small doses of clobazam and Trileptal.......we can't handle all the side effects of meds and opt for quality always although we know it can be risky. Experience has taught us this works best..........cheers....Paula