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wyboemail
wyboemail

Things that come with Epilepsy and not understanding

My soon to be 11 year old son has BRE and does still sleep in our bedroom since his seizures happen during sleep. He has went through different situations with his epilpesy. He would get what I would describe as panic attacks when in a noisy place like a high school basketball game, buffalo wild wings and any time he was in a unfamiliar setting that he was not sure about. This went on for about a year and had improved to almost non factor now. In the last few weeks he has now gotten where he wants the television on while he is sleeping. We do not mind if he lays in bed if he gets to bed early enough and watches a little television but then shut it off when he is ready to go to sleep at bed time. Lately he has had trouble going to sleep saying he is not tired. Last night he did seem to go to sleep although restless and the televison was on while I was still watching. Problem is my wife does not seem to understand that these are things that come with the "E" and something he cannot control how he feels. His two older sisiters feel the same way as their mother. I feel sorry for him since it is like he is getting in trouble for something he cannot control how he feels. They all say he is a baby and he just wants to watch tv, etc. I have printed other peoples stories off and had them read them and they still refuse to understand or even try to to relate to the situation. It just makes matters worse I feel when he knows his mother and sisters are upset with him due to these issues. What do I do or say to make them want to understand and realize that this is something he cannot control? My wife and I are arguing more about this which does not help matters either with added stress to him knowing it is about his situation. HELP!

curtis.wybourn@us.qbe.com

Curt

By wyboemail at Tue, 03/10/2009 - 8:26am | 88 views | 10 comments

Recent Comments on this Discussion

I completely understand what your son is going through.  I first started having seizures in the night and they would frighten the stuffing out of me.  I was lucky enough to be in college when this happened, so, at first, I would put in a movie to distract my anxiety and get me to relax.  Loud, strange places still bring me anxiety and can trigger seizures with me, but at night the sound of 'mind candy' was enough to get me to think of anything else but sleeping until I did fall asleep.  I still leave the TV on at night (7 years later) to help me not think about the possibility of seizing in the middle of the night.  I'm on Lamictol, but it doesn't control all of my seizures.  It's to the point now that without the TV, I cannot fall asleep.  The sound of the TV automatically lets me know it's time to relax and I fall asleep without knowing it. 

Though this method can increase your electric bill by a few dollars a month, I would definitely choose this over taking any kind of sleeping pills.  I hate taking medications from when doctors first misdiagnosed my seizures for low blood pressure, and/or migraines.

I'm sorry you're at odds with your wife and daughters, but they do not share the tauma your son is forced to deal with every day of his life.

Pony P...

You've got a lot of different medical/family issues going on here. I'm glad you're finding some support on this site. Maybe the best thing for your wife and daughters is to have THEM get on the Family & Friends forum and start answering questions for, and giving support to, other families facing similar issues with loved ones with epilepsy. They'll start to see that they're not alone. We're not lazy, crazy, or stupid. Epilepsy just makes us feel that way sometimes, not to mention the meds we have to take :-) I take Lamictal and it gives me some insomnia. I've found that lots of exercise really helps to control that. There are sports your son can do that don't involve loud noises. I run and swim (but only closely supervised). Those are quiet sports. If he needs to exercise at home for now, an elliptical trainer (or a cross-country ski machine) could be perfect, with noise-blocking headphones that people wear on airplanes. Used machines can be quite cheap on eBay. My family also has been great about finding me products that are soothing and conducive to sleep. One is a kid's toy called the Animatronic Marine Life Building Set on http://www.cyi.net/index.php?option=cyi-004&op1=cm-004j_p_q_-_188 and the other is Nightwave, a device that projects a blue light onto the ceiling that gets brighter and dimmer at a slow breathing rate.  You watch the light until you can't keep your eyes open anymore. Check it out on http://www.nightwave.com/index.php You're a super dad for being so understanding and supportive. Keep up the fight. Your son needs you to stay focused and strong. You're in the right here. Good luck to you all!!!!!!!

sonett...

Hi Curt,

I can't remember if you had posted what meds your son is on.  They could be causing the problem with sleep. Have you ever tried 3mg of melatonin?  If melatonin doesn't work, you might consider asking the neuro for something.  This is not uncommon.

Second, have you ever considered using a monitor to use in your son's own bedroom?  Most of my daughter's seizures are at night but I've got a monitor in her room that allows me to hear her have a seizure.  I realize the importance of knowing if your son has a seizure but to keep everyone happy would it be possible for your son to realize it's time to graduate to his own room?  Sibling rivalry, regardless of any medical conditions often still occur.  You can explain to your heart's content but it still isn't going to make what they think is a wrong a right.

I'm like your son.....I have to have the radio in the sleep mode when I go to bed.  Maybe your son finds it soothing like I do my radio.   Possibly him having his own radio, in your room or his room, might alleviate his need for the TV.

~Karen

Nerak95

I googled melatonin and I found one medical journal page that said melatonin can actually induce seizures in some epilepsy patients especially children. Did your doctor tell you to administer that? At this time we give him B6 in the am with his breakfast and am keppra. Then in the pm we give him coromega fish oil, aloe vera juice and magnesium which I think we are going to quit giving since I do not think it is doing anything for him. Suppose to calm and help to sleep which I do not think it is doing. He was taking one mag pill and then we upped to two. When he started taking two is when the restlessness started. Only gave one again last few nights so maybe they have the opposite effect on him.

wyboemail

Since my daughter has been battling insomnia for years because of her taking Felbatol, sleep has been a major issue with her.  We haven't always had the luxury of Melatonin working because sometimes the other medications that she's on or the retractable epilepsy that she has prevents many of us from having a decent, uninterrupted sleep. In any event, Melatonin has been working fairly well for her now.

All but one of the current studies that are being done in regards to Melatonin do not exclude seizures or epilepsy.  Each of the neurologists that my daughter have had never had a problem in allowing my daughter to be on Melatonin.  My daughter's former pharmacist said there were no contraindications for her to take Melatonin.  But to answer your question if her neuro told me to give it to her....no.  It was my inquisition that sought its use. 

While Melatonin is a relatively safe alternative to give as a sleeping aid, I'm sure there may be some individuals that may have a reaction to it.  I would enjoy reading the article in the medical journal that you found where it was indicated that melatonin can induce seizures in some epilepsy patients.  Always good to educate oneself.

~Karen

Nerak95

http://www.umm.edu/altmed/articles/melatonin-000315.htm 

Since we cut back to the one magnesium pill a night he has been sleeping fine again. Maybe to much magnesium is not good for him??

Curt

wyboemail

Hi Curt,

 This may not be like your story about your son but I found it was very healthy with me and my girlfriennd because we used to fight quite a bit. I have epilepsy and she understood nothing about it. We fought at first but I go to a support group and she accompanied me once and she then started to learn what she could about this disease. She now goes to every meeting I go to. While she may not fully understand about the disease it has helped us because she knows more about it and realizes that it is something I cannot control. I'm saying this more for your fighting with your wife. Believe me, it's alot easier dealing with this if you have a loving family behind you. My sisters are constantly calling to see how I am. They also have done some reading up on epilepsy and they too, want to make sure I am doing good and making my appts and such. If I did'nt have them behind me, I probably would have attempted suicide again, and possibly this time, actually done it.

zepled

Zep,

They do support and love him and understand his situation but they just do not understand they oddities that come along with E. I think in time they will. I think my wife just see's the girls feeling like Ethan gets a way with more because of E but he really does not. Then she aggrees with them to not make them feel bad. I think in time it will get to a point where everyone understands. We live in an area where there are no local support groups. Closest is 2 hours a way. that is why I utilize e.com sooo much.

wyboemail

He is on 500 mg of keppra twice a day. I have no problems with him being in our room until he feels he is ready. He has never wanted to sleep alone and i think he knew things were not right with him from a very early age. He was sleeping in his own room after a time of sleeping in our room before his first seizure and then on that faithful night when he apparently struggled to get himself out of his bed the way his comforter was pulled behind him when he was having his first seizure. Finding him in the hallway after we heard two large thuds coming from down the hall foaming from the mouth and shaking all over with nothing but the whites of his eyes showing was enough for me to make up my mind that when he is ready to move back into his room is ok. After he came to and was able to talk again he said he was trying to get to us and he thought he was going to die. That coming from my eight year old son ripped my heart out. I will check out the melatonin. Now the last couple nights he has went to sleep fine.

wyboemail

Curt,

You have valid reasons for wanting him near you.  Glad to hear that the last couple of nights were better.  Hope it continues.

~Karen

Nerak95

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