My 29 yrs old brother died 1-5 from grand mal seizure- I have questions

[brain]

Dawn:

I am sorry to hear of the loss of your brother,
please accept my sympathies. I too have had
Tonic Clonic seizures (aka Grand Mal) and had
close brushes with S U D E P which is known
as Sudden Unexplained Death in Epilepsy.

I have no memory or recollection of any of the
events, nor do I feel any pain but only after the
seizure is over with if I had injured myself in
some manner.

One thing I know it causes heaviness upon my
family when such events like this occurs when
danger arises, especially when it's being Status
or becoming a S U D E P issue.

For my own family trembled in total
helplessness, fortunately, I made it through.
I live one day at a time and my family is
fully aware of the entire being. It angers and
saddens them at the same time, even with my
ex-husband whom we still have close rapport,
it still bothers him. I am intractable, and there
is nothing that the Medical Doctors can do
about it except give me medications; which
they do control it, for if they take me off of
it, I seize all the time so the medications DO
work, but it is not a cure. That is all they can
do for me, and yet all of us loathe seizures
(epilepsy) with a passion.

[theneffs]

I need help understanding how my brother survived 21 -29 with seizures but the last one took his life with no warning. If you have lost a loved one with this similar circumstances, please share with me the outcome or science behind it.

Thank you for bing open.

Dawn

P.S. Autopsy is still pending from 1-5-09.

[Ruth]

Hi theneffs

I have not lost a loved one because of epilepsy. I feel for your loss. It was tragic.

I almost died 4 times from seizures. Twice from STATUS EPILEPTICUS. That is where you have one seizure after another, without stopping. It usually ends in death. Is that what your brother had? The doctors are surprised that I am still here.

[Meetz1064]

NOT lost a loved one, but the concept of why this happened might be this:

Seizures occur, for some, on a regular basis--for others, on an irregular basis.

For those whose seizures are NOT truly controlled, something called KINDLING can occur.......this is basically how the brain "learns" to have a seizure again and again and again, if that makes any sense.

At some point, if the patient's seizures become totally uncontrolled (intractable), then the KINDLING continues to "grow"....with the final result sometimes being Sudden Unexplained Death in Epilepsy.

Hopefully that helps you some.........

[Ruth]

theneffs

I had no pain or suffering with my status seizures. It was as if I were sound asleep. If I

had gone into SUDEF, I would have felt nothing. Your brother probably felt nothing at all.

It is a tragic loss, that is painful to you.

[tinasmom]

Dawn

I have not found any answers to why this happens. After losing my daughter to Sudden Unexplained Death in Epilepsy, I researched the Internet hoping for some answer and there is not much on Sudden Unexplained Death in Epilepsy.

[alivenwell]

I'm so sorry for your loss. From what I know, the heart fibrillates (basically doesn't do a thing) and CPR is useless unless an automatic external defibrillator is available to be used on a victim.

I would imagine this affected vital organs like the heart and oxygen supply.

So sorry...Hopefully they will find a way to fight kindling and status one day. This has reminded me to re-certify in cardio pulmonary resuscitation and automatic external defibrillator techniques. I was after equipment that performs the automatic external defibrillator techniques (very expensive!).

[theneffs]

It has been 1 month from 1/5/09 the day that my brother passed away. I have been waiting each day for answers. Today I have received the autopsy report that said the cause of death was "Seizure" a natural cause.

Through out the report it clearly states just how healthy his organs were, etc. His toxocology came back stating that he was on his seizure meds. The technology is remarkable - they were able to test his blood right down to the miligrams for his meds.

I feel that my brother passed with honor and integrity. This was a fight that he could not win. I was told that prior to his seizure coming on that he looked up at the ceiling- I will take that to mean that he saw God and that God was ready for him.

He was my sole sibling like that of a sole mate.

Again, thank you for your feedback- knowing that he past in his seizure "painless and memory free" gives me peace that he did not suffer.

My heart goes out to all of you who have sufferred a loss of a loved one to seizures.

Sincerely,
Dawn Neff

In loving memory- Steve Mihm 4/13/79-1/5/09
myspace Steve Mihm

[seizures4ever]

Dawn,

I am so sorry that the autopsy couldn't be more specific. But from the tone of your message, it sounds like you are making your way through the grieving process in such a healthy way...what a strong person you are!

Your brother did pass away with honor. He was, like all taken by Sudden Unexplained Death in Epilepsy, an innocent victim.

I wish you peace and love as you and your family continue to grieve, heal, and keep the memory of your brother alive.

-Julie

[joan]

I am so sorry and you are such a good sister. It is such a terrible loss. My kids are the only epileptics we know. Know your brother lives on, in you. I wish you only the best.

joan*

[Dee07]

Dawn I received your note. Again my sincere sympathy for the loss of your brother. You are just starting the grieving process and was hapy you have already sought out help. Living in Ny makes it difficult for support groups. If you can find one go you'll feel a world of healing. I have listened to Rick Warren. Wish he were here. His words will be very comforting for your family. Give my best to your Mom as she needs all our prayers to get through her loss. It is not an easy process but takes time. Remember one thing Dawn you will all grieve differently and at different times. That's okay. God Bless and God speed for all of us on this journey of healing. There a website call "Gratefullness.org" where my husband and and I started a Sudden Unexplained Death in Epilepsy candle lighting. When you enter the site just go to search and type Sudden Unexplained Death in Epilepsy it will lead you there. You can light a candle for your brother with a message every day. The candle stays lite for 48 hours. I found it very comforting for me to my daughter. Your Mom might get some comfort being able to light a candle. Any problems let me know. I am going to light one today for

[tripletdad]

I am so sorry for your loss! I can tell you that during my grand mals, I lose consciousness. I have never felt any pain or have had any kind of awareness.


I hope that brings you some comfort in all of this. dont

You have my sincerest sympathies.

[ashmstng]

I am sorry for your loss of your brother. I hope you and family the best in the support group and from here on. My prayers are out to you and your family. God Bless..

[douglas]

> 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?

yes, when you wake up you are aware that you have just had a grand mal. you remember the very beginning of the onset of grand mal. you wake up very confused. you dont remember the date, the peoples names, where you are. but it all comes back fairly quickly. within 10 to 20 minutes.

> Are you in pain during the seizure or just afterwards?
there is no pain durign the grand mal your muschles feel very sore thorugh. like you just ran a marathon. obviously you will feel pain if you actually fell and injured yourself.

hope it helps.

i am sorrry for your loss.

[Ruth]

Douglas,

1. Since I was asleep, I do not remember from beginning to end.

2. I do not remember the tonic clonic but I am very confused.

3. This morning I had several seizures. I was awake and aware of what was going on. My husband helped me out by giving me an extra clonazepam and lorazepam. I was in an easy chair so my muscles did not get sore.

Theneffs

This is a terrible loss of a 29 year old to SUDEF. Your family is going through a grieving process that will take time. You will get through this. It will take time. I am 67 and I have gone through the greiving process. I am glad you are sharing it with us.

[JimNavy]

I am sorry for your loss.

I'm new here so I've posted a lot in the last hour. Up till now I knew two other people with epilepsy.

When I have mine I have no memory of them. I have carried on conversations on the phone and had hallucinations before my grand mals. When I do wake up I am sore and worthless for the rest of the day, like I ran a marathon and have absence seizures the rest of the day. I sleep most of the day after too. I've bit my tongue everytime too.

[Ruth]

Hi Jim, welcome to CWE. We are glad that you are posting.

This forum was made by Bernard out of love for his wife Stacy. That love permeates throughout the whole forum.

I have never bit my tongue.

[neilB]

Hi Dawn,

I have grand mal (I believe every one calls them tonic clonic) and I never remember anything afterward and only a little tired when I wake up. I am very sorry to hear about your brother and I hope the support group helps both you and your mother.
Neil

[lorianng72]

i have also lost someone due to a seizure. i have them myself too. my cousin was in her 20's and they found her in her room with her hairbrush still in her hand, she was brushing her hair i assume. she left behind 3 children. i am always scared that will happen to me, i hate living in fear. i don't know how not to. no one around me understands that fear. when i do have my seizures though i am totally unconcious. its like being here one minute and then not the next. i have a lot of people tell me they are not hereditary and some tell me they are. i'm so confused. they run on my fathers side of the family. could they be hereditary? i'm so sorry for anyone who has lost someone due to this, its very hard to understand. i'm still trying myself

[lorianng72]

i always bite my tongue. i just had a seizure last week after being seizure free for 3 years and this is the most sore ive ever been. i could not eat for a few days and could barely talk. thank god i felt it coming on and rushed to the hospital where the nurse told me my jerking movements were not seizure related, and ten minutes later i had a seizure. i dont even think doctors and nurses know a lot about them. you have to listen to your own body