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Old 01-07-2009, 02:08 AM
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Unhappy My 29 yrs old brother died 1-5 from grand mal seizure- I have questions


To all of those who have experienced grand mal seizures- I want to know what you rememeber once you wake up ? Do you have any memory from once it begin to ends? Are you in pain during the seizure or just afterwards?
Dawn

Last edited by Bernard; 01-07-2009 at 08:31 AM. Reason: remove contact info per forum policy
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Old 01-07-2009, 08:38 AM
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Hi Dawn, welcome to the forum.

Condolences on the loss of your brother.

I take it (from your questions) that this was his first and only seizure?

There are anectdotal reports of people having conscious awareness during a tonic clonic (aka grand mal) seizure, but that is not the norm. Most tonic clonic seizures involve complete loss of consciousness through the event. Since there is no conscious awareness (or memory), there is no pain. My wife can generally remember details leading up to minutes before her tonic clonic seizures started, but every now and then she has had one that caused greater confusion and she had problems remembering things hours before.
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Old 01-07-2009, 08:57 AM
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Dawn,
I'm so sorry for your loss.

I have had tonic clonic seizures...for me, I remember the moments leading up to the seizure, but am confused and groggy afterward. It usually takes me about 5 minutes after the seizing stops to become aware of what is going on. As far as pain goes: I have never experienced pain during the seizure and it is generally mild to moderate afterwards. My tongue hurts because I have bitten it; if I fall, sometimes my joints hurt or I may have a bruise; I have muscle pain (similar to after exercise); and I may have a headache for a day or so afterward...

Again, my condolences for your loss.
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Old 01-07-2009, 09:49 AM
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Hi neffs! I have grand mal seizures. Unlike some people here, I don't get what's known as an aura. An aura is kind of like a warning that a seizures coming. I am completely not concious during a seizure. When I come out of my seizures, I have a hard time remembering what I was doing just minutes before the seizure and don't even realize that I had one. For example, one day I was laying on the couch reading one day, and the next thing I knew, I was lying in bed next to my husband. he looked worried. I asked what happened and he said I had a seizure, and then he helped me walk to our bedroom. I didn't remember any of it. Unless I've bitten my tongue or fallen and hurt myself, I don't feel any pain afterwards. Just a bit tired. I hope this helped. My condolences for your loss.
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Old 01-07-2009, 09:52 AM
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Hi Dawn


and welcome to CWE.

I'm so sorry for the loss of your brother. Truly, I am.

I, too, suffer from tonic clonic seizures. However, mine are highly violent, and I don't think that they are the norm. I break bones and things around me, usually, unless people get things moved out of the way quickly.

Do I remember anything? NO. Do I feel pain during? NO. Do I feel pain after? YES. BUT--I sleep for 18 to 24 hours after the seizure. And I bite all the way through my tongue on both sides.

I usually have to have someone tell me what happened before hand. I can't usually piece it together on my own.

PLEASE KEEP IN MIND---EACH CASE IS DIFFERENT. MY T/C'S ONLY occur in my sleep, which is another odd thing. So, I'm not quite your "normal" E patient.......LOL, if there really is such a thing.

Please, take the time to go check out the Epilepsy 101 thread. It should help give you some answers, too.

http://www.coping-with-epilepsy.com/...lepsy+101.html

Feel free to ask whatever questions you want. We WILL answer.

Take care,

Meetz
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Old 01-07-2009, 09:58 AM
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Hi Dawn, I am so sorry for your loss.

My daughter has tonic clonic seizures, though she has gone a long time since the last one, so I am keeping my fingers crossed these days.

She must have some kind of warning, but never remembers it. Others have said that she is agitated. She doesn't remember any part of what occurs. She only knows that she has had one because she is down on the ground with people hovering over her.
She usually rests for up to 60 min and is back into her day. She doesn't remember any part of her day at that point.

Live is so precious.
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Old 01-07-2009, 10:30 AM
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Hi Dawn and welcome.

I'm sorry for your loss.

I have tonic-clonic seizures and I've had one that I remembered.

I'm usually just really sore after I have one , and sleep for few hours.


Belinda
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Old 01-07-2009, 11:32 AM
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Welcome * and Im so sorry for your loss.

My son has large grand mals. He doesnt remember anything and sleeps 24 - 48 hrs afterwards. He is not sore or in pain afterwards, unless he has hurt himsef. I was in a car accident with an 18 wheeler years ago. For a few months after the accident I had grand mals. I took dillantan for a few months. I never had them again. I remembered nothing. Its one of the things that keeps me sane, knowing they know nothing.

Good luck and hang in there,
joan*
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Old 01-08-2009, 02:15 AM
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Thank you all for your feedback, it gives me peace!


To all that responded to my email about my brother passing away on Monday 1-5-09 from the grand mal seizure. Its been really tough these last few days knowing that he isn't here with me. I miss him more than I can handle.

He had been dealing with these seizures since he was 21 years old and at 29 it took him. Hisbody is at rest and his mind is a peace.

I will keep checking in and give you all an update with the autopsy report. I prey that he passed away pain free.. really that is what means the most to me now. Many of you helped me have peace that if he passed during his seizure than he must have fell into a mental comma before passing.

I will be back,

Love,
Dawn- little sis.
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Old 01-08-2009, 11:22 AM
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Welcome Dawn.

I am sorry for your loss. Epilepsy has taken several of my friends and it's never easy.

Everyone has different experiances with seizures, but most people really feel no pain. It's like going under general anesthesia, just suddenly lights out and then you wake slowly all disorientated. Some of us have warning signs or feelings of impending seizures.

I had only one grand mal but I remember bits and pieces. Though I felt no pain during, it was in the following days I discovered, I chewed thru both sides of my tongue and pulled several muscles in my back and shoulders. Most people have no memories of grand mals and this is very common.

It's much scarier for those observing seizures, than those experiancing them. I am glad you have found Bernard's site for answers. There are some of the most wonderful and caring members here to help you thru this terrible time. Please be kind to yourself, and take care. Our door is alway open.

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Old 01-09-2009, 01:33 AM
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Thank you so much for sharing your experiences with me. I am letting my family know about your experiences and it is helping with the shock of this.
All my love, Dawn
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Old 01-09-2009, 12:49 PM
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I am so sorry for your loss. I know this must be a very difficult time for you.
My father had 2 grande mals several years ago and he never remembered anything from them. I have petit mals, I do get auras that let me know a seizure is coming on, but then I do not remember anything for 20-30 minutes. The dr says my seizures really only last a minute or two, but the after effects keeps me in a suspended state where I am conciscous but totally unaware for the remaining time. I think I read somewhere it's like the porch lights are on but no body is home.
My prayers and thoughts go out to your family.
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Old 01-11-2009, 12:36 AM
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To all of those who have responded to my posting of my Brother, Steven B. Mihm. 4/13/079-1/5/09 29 years old. Today we celebrated his life and he could not have asked for a better day in Portola Hills, California. The day was warm, clear and beautiful. We could see the ocean and Catalina Island. The evening was clear, all the city lights were sparkling and the moon was lighting up the sky. It became evident that he was truly with us today. All of his friends and family came to embrace his life and celebrate. I had all of the guests take a white balloon and write something to my brother. Later we gathered 72 balloons and suddenly the wind was very strong and we let the all go at one time. This was an amazing moment for the family. It was as if he wanted those messages to be sent to him in heaven as fast as he could read them. I am so pleased that this very day was as perfect as it could be and that he, looking down upon us enjoyed it! I will be able to sleep tonight and knowing that he went peacefully
and that today would be everything be would ever want it to be!
Love,
Dawn
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Old 01-11-2009, 02:57 AM
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What a very special sister you are. He carried that away with him too.

I am so glad that the day was perfect. I am glad that you have today's memories to add to all the others through your lives together. I am so sorry that it was cut short, but it is obvious that the two of you shared a lot more in the short time than many others do in three times as many years.

I am sure there will be many ways that you can honor your brother in the future, by perhaps helping in the E community. Take time to heal, and then one day you will be able to give back.

Take care of yourself.
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Old 01-12-2009, 02:33 PM
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I am very sorry that your brother passed away.

You asked if he had any pain during the process. I have have really severe grand mals (tonic clonic) seizures. I felt no pain during my seizures when I was unconscious. I only knew that I had seizures when I woke up in ICU.

It is a rough time for you. You have lost a dear one.
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Old 01-12-2009, 05:12 PM
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I am so sorry for your loss.

But I am glad that some of the feedback you have received from others on our site is a comfort to you. Like others have said, after my tonic-clonics (grand mals), I also have no memory of what occurred during the seizure.

May God hug you tight during this difficult time.
-Julie
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Old 01-12-2009, 05:29 PM
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I am so very sorry for the loss of your brother. My daughter died 2 years ago from a seizure, she was 24. I know what you are feeling and there are so many people here that will help you through this.
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Old 01-12-2009, 09:04 PM
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I don't have those kinds, but some of the same symptoms of not remembering. I usually remember something from before...but there is a gap. I just had my script increased, and have not had any for almost a year now. I am sorry for your loss of your brother. I haven't hard of people dying like that. I heard like in a crash after one or something like that. At least you are at peace knowing he is finally seizure free, and well free. Unfortunately he is not physically with you, but he is with you always
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Old 01-12-2009, 09:34 PM
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I do not remember before or after a seizure what happened. I have no pain during my seizures. I have some seizures and stay awake. I have no pain with those, either. I do not suffer.

If I should die during a Status Epilepticus, I would not know or remember it or feel any pain.
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Old 01-13-2009, 01:03 AM
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Began a grief support group w/Saddleback Rick Warren


I have signed up for a grief support group with my mom and I. I will keep each of you posted on the progress. Take Care and thank you again for everything!!!!! Love, Dawn
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