SUDEP / Epilepsy Kills / Death by Epilepsy - Info Site Link

[Dee07]

I've read all your posts on Sudden Unexplained Death in Epilepsy deaths. Lost my precious daughter, Donna age 41 who suffered 38 years with refractory epilepsy or as some would say non-controllable seizures on Nov. 15, 2008. According to the ME, it wouldn't have mattered if both my husband and I were in the room we could not have saved Donna. She was asleep on her back when she passed. So no safety pillow would have meant anything. According the the experts with Sudden Unexplained Death in Epilepsy the brain tells the heart to stop and starting is not an option. For those who have had close encounters, I am glad you made it. What we need is research to find the causal relationship between Sudden Unexplained Death in Epilepsy and the heart. Baylor University in Texas is leading the research as are others. Donna in death gave the ultimate to research to study and possibly some valuable information to save one life. We are also part of the study with our blood. They are looking for a gene in our blood or a mutation thereof. They are also looking into families with severe heart disease to see if there is a genetic link. So take heart all of you maybe soon we might have a clue. As of right now all any of us as parents can do is try anything to save ourloved ones. May God bless all of you on your long journey and I will keep you in our prayers. I remain Dee Donna's proud mom.

[joey]

I've read all your posts on Sudden Unexplained Death in Epilepsy deaths. Lost my precious daughter, Donna age 41 who suffered 38 years with refractory epilepsy or as some would say non-controllable seizures on Nov. 15, 2008. According to the ME, it wouldn't have mattered if both my husband and I were in the room we could not have saved Donna. She was asleep on her back when she passed. So no safety pillow would have meant anything. According the the experts with Sudden Unexplained Death in Epilepsy the brain tells the heart to stop and starting is not an option. For those who have had close encounters, I am glad you made it. What we need is research to find the causal relationship between Sudden Unexplained Death in Epilepsy and the heart. Baylor University in Texas is leading the research as are others. Donna in death gave the ultimate to research to study and possibly some valuable information to save one life. We are also part of the study with our blood. They are looking for a gene in our blood or a mutation thereof. They are also looking into families with severe heart disease to see if there is a genetic link. So take heart all of you maybe soon we might have a clue. As of right now all any of us as parents can do is try anything to save ourloved ones. May God bless all of you on your long journey and I will keep you in our prayers. I remain Dee Donna's proud mom.

sorry for your loss it makes me a little nervous

[brain]

So sorry to hear your loss of your
precious one to the awful tragic
Sudden Unexplained Death in Epilepsy!
(((( Much hugs to you ))))

[RobinN]

Teacher offers lesson on rare fatal seizures
By Walter F. Roche Jr.
TRIBUNE-REVIEW
Wednesday, January 14, 2009

When Emma Bursick died in her sleep last summer, doctors first listed the cause as "seizure disorder" -- the same reason cited in the death of John Travolta's son Jett.

But Shannon Bursick, the 7-year-old's mother, wasn't satisfied with that answer. The Indiana Township woman's quest for a more exact reason for her daughter's death led her to a series of discoveries and an effort to educate other parents of children with epilepsy to the risks of sudden and unexplained deaths.

Emma, doctors eventually concluded, died from Sudden Unexplained Death in Epilepsy, or Sudden Unexplained Death in Epilepsy. Medical experts say Sudden Unexplained Death in Epilepsy, although far from common, is more likely to strike patients with epilepsy who have frequent, uncontrolled seizures.

According to the Epilepsy Foundation of Western and Central Pennsylvania, a person with epilepsy has a 1-in-3,000 chance of suffering Sudden Unexplained Death in Epilepsy in a one-year period. The odds increase to 1 in 100 for those who have warning symptoms.

Because the details of Jett Travolta's autopsy were not made public, experts don't know whether he fell victim to Sudden Unexplained Death in Epilepsy, but details from the death certificate indicate that is a possibility.

Bursick said the death of the actor's son might help bring attention to Sudden Unexplained Death in Epilepsy.

"I certainly feel empathy for the family," she said.

Dr. James P. Valeriano, director of epilepsy programs at Allegheny General Hospital in the North Side, cited reports that Jett Travolta's autopsy did not show evidence of trauma as one indication that Sudden Unexplained Death in Epilepsy could be the cause.

"There's no way to know for sure. If there was no trauma, then the most likely cause was Sudden Unexplained Death in Epilepsy," he said.

Valeriano said that trauma suffered during a seizure is a more common cause of death, but he typically encounters one case of Sudden Unexplained Death in Epilepsy each year in his practice.

Sudden Unexplained Death in Epilepsy is defined as "a sudden occurrence of death during the course of normal activity in a person with epilepsy, and in the absence of other medical explanations."

Bursick, a teacher at Hampton High School, said it wasn't until after Emma's death in July that she learned about Sudden Unexplained Death in Epilepsy and knew her daughter experienced warning signs.

"No one told us, including the neurologists who were directly caring for her," Bursick said. "We had no idea what happened to her."

She said the family later learned that Emma was susceptible because she had about one seizure a week, and occasional tonic-clonic seizures -- whole-brain seizures known as grand mal. Emma was diagnosed with epilepsy when she was 7 months old and regularly took several medications to control it.

Her two siblings, including a twin brother, are epilepsy-free.

Bursick said some neurologists, including those who cared for Emma, are reluctant to warn families about the possibility of Sudden Unexplained Death in Epilepsy, fearing it might cause needless anxiety and, in many cases, might not be preventable.

She said some experts contend that epilepsy patients don't face increased risk from Sudden Unexplained Death in Epilepsy until they reach their teens.

"Our position is that we really want to know," she said. "We don't think physicians have a right to censor the information they give to patients and their families."

Valeriano said that although there are limits to preventing Sudden Unexplained Death in Epilepsy, caretakers need to be aware of possible symptoms so that neurologists can adjust medication or recommend other treatment.

Failure to take the proper dosage of medicine at the right time can increase susceptibility, Valeriano said. Patients sometimes don't tell doctors when seizure activity increases because, under state law, they could lose a driver's license, he said.

The causes of Sudden Unexplained Death in Epilepsy are undetermined but could involve electrical activity in the brain, cardiac arrest brought on by a rush of adrenaline, or electrical activity that accompanies strong, multiple seizures, Valeriano said. Victims often are asleep when it happens and could suffocate on a pillow. He advises patients to avoid sleeping on their stomachs.

Pittsburg Tribune-Review
Walter F. Roche Jr.
wroche@tribweb.com

[skillefer]

Thank you Robin! I saved it so that I can e-mail it as an attachment if needed.

[tinasmom]

Dee so sorry for your loss. I lost my 24 year old daughter 2 years ago. I believe research is the key to Sudden Unexplained Death in Epilepsy and also finding a cure for E. People still don't like to talk about this disorder and don't understand it. This is why I fight so hard to make people aware of E. The more people we can reach, the better the possibility for funding for research. When I attended the National Epilepsy Foundation Leadership conference, I learned that funding for research is flat-lined so they can't move forward because they simply don't have the money. Sure wish I knew a few millionaires, Ha Ha.

[RobinN]

Published in the January 13, 2009 Chicago Tribune

As a media executive and father of a child whose life has been derailed by uncontrolled seizures, I watched the Jett Travolta tragedy unfold with particular sadness. The Travolta family deserved much better from the media, especially those invasive and sensationalistic TV shows, Web sites and magazines whose feeding frenzy was nothing short of despicable. Yes, even movie stars deserve a zone of privacy when they are in mourning.

The media also wasted an opportunity to educate our country about the relationship between seizures and epilepsy, a devastating neurological disease characterized by abnormal brain activity and recurring seizures, which affects 1 out of every 100 people. That's 3 million Americans and 50 million men, women and children worldwide—more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's disease combined. While some people with epilepsy can lead normal lives and are able to achieve seizure control thanks to effective drugs or brain surgery, most patients do not and suffer debilitating side effects from all the seizures and medications.

Uncontrolled seizures wreak havoc on the brain, causing depression, developmental delays and even death. An estimated 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy, and other seizure-related causes such as drowning. That's more funerals from epilepsy than those caused by other terrible diseases such as breast cancer, nearly 140 per day.
In this era of medical breakthroughs, doctors and researchers still struggle to understand what causes seizures. In two-thirds of patients with epilepsy, the cause is never known. Many children with autism also suffer from epilepsy. Thousands of U.S. soldiers are developing epilepsy after suffering traumatic brain injuries on the battlefields of Iraq and Afghanistan. Despite these numbers and all the lives at stake, epilepsy research is woefully underfunded and the search for a cure has been stymied.

Living with seizures is cruel and unusual punishment for patients and their families, no matter how old they are or how famous they might be. One never knows when the next seizure will strike and whether it will be damaging or even fatal. And for a parent, it is especially heartbreaking.

To visit CURE’s website: http://www.cureepilepsy.org

[theneffs]

My brother, Steve Mihm died on 1-5-09 from a seizure. He had sufferred seizure from age 21 to age 29. They would come and go - all being grand mal seizures. He took his meds and the autopsy should that he was on them. Never did the family expect him to pass away.

I have learned through this site that since he passed away during the seizure that he felt no pain and had no memory "Comma state". That helps me rest a night at knowing that he did not suffer before passing. I was told that he looked up at the ceiling- perhaps he knew it was his time to go and God was reaching for him.

I tell people that he was my sole sibling like that of a soul mate. We talked everynight at 9:15PM and he was the best uncle to my kids (4 & 6yrs). His passing has been difficult on the kids and I. We have reached to our church for comfort and enrolled myself and my mom in a greiving group.

My mom is suffering a ton. She simply is frustrated with the autopsy report. She wants more answers. She understands that he had a seizure but what was it that truely took his life. I will try my best to explain the adrenilin rush that could just stop the heart during a seizure. Is there a web site specifically describes this stuff.? Any help would be appreciated.

Sincerely,
Dawn Neff

[Bernard]

Drops In Blood Oxygen Levels May Be Key To Sudden Death In Some Epilepsy Patients

[brain]

Risk factors for sudden unexpected death in epilepsy: a case-control study. [Lancet. 1999]
Risk factors for sudden unexpected death in epilepsy: a controlled prospective study based on coroners cases.

I have this quoted on the original post;
plus others as well ...

[Ruth]

I was in a comma state in 1979 after having status epilepticus. When a person is in a coma state, sometimes they can hear what is being said. I heard my neurologist tell my husband to prepare for my funeral. I could have had sudden death.

I would have had no memory of it and I would have died a quiet death. Status Epilepticus happened to me about 1995. I had no memory of that one either. I would have died a quiet, with not knowing, death. It would have been peaceful.

I am suspectible to Sudden Unexplained Death in Epilepsy. Epilepsy is in the brain. If the brain tells a part of the body to stop, it does. It is more likely in an epileptic. We have GABA (a major inhibitory neurotransmitter in the brain). If it stops, we stop working.

I am really sorry for your loss.

[Bonito1947]

THIS IS bonito1947 from tucson, arizona taking 5200mg keppra, 300mg zonisamide and 200 lamicatal for seizure disorders over 30 yrs. On sudden death due to epilepsy as I have been on the death bed several times. thanks, ray lopez.

[theneffs]

Dear Ray,
I would love to speak to you regarding your experiences. I have accepted religion into my life as of the night of my brother's passing. I had a very profound moment in my life which was "Do I truely believe that my brother is in Heaven and is living with a whole mind and body, one that is free". Since my brothers passing into Heaven, I have joined Rick Warren at Saddleback Church and joined a Grief Share program. I pray every day, during my drive to work, drive home and going to bed. I pray every time I think of my Brother. I talk to him and thank God for giving my brother internal life, free from his seizures and tempations. As for the grief Share program, it is a Great program for anyone you love going through grief. I joined 1 week after his passing and that was my calling. The timing was perfect. It is through that program that my each day becomes a bit lighter but the scar tissue of loosing him will remain forever. I find myself struggling with the fact id he go peacefully or painfully?? Through this forum I have learned that when having a Grand Mal Seizure that your mind is in a coma state, what about when your soul passes into Heaven? Since you said that you had died, what were your experiences? Please share. I have read 90 minutes in Heaven that talks about the Heavenly experiences. Great Book.
Love,
Dawn Neff
(A sister who still loves her brother, Steven B. Mihm very much) I now relieze that it is his turn to look over me and guide me).

[joey]

My brother, Steve Mihm died on 1-5-09 from a seizure. He had sufferred seizure from age 21 to age 29. They would come and go - all being grand mal seizures. He took his meds and the autopsy should that he was on them. Never did the family expect him to pass away.

I have learned through this site that since he passed away during the seizure that he felt no pain and had no memory "Comma state". That helps me rest a night at knowing that he did not suffer before passing. I was told that he looked up at the ceiling- perhaps he knew it was his time to go and God was reaching for him.

I tell people that he was my sole sibling like that of a soul mate. We talked everynight at 9:15PM and he was the best uncle to my kids (4 & 6yrs). His passing has been difficult on the kids and I. We have reached to our church for comfort and enrolled myself and my mom in a greiving group.

My mom is suffering a ton. She simply is frustrated with the autopsy report. She wants more answers. She understands that he had a seizure but what was it that truely took his life. I will try my best to explain the adrenilin rush that could just stop the heart during a seizure. Is there a web site specifically describes this stuff.? Any help would be appreciated.

Sincerely,
Dawn Neff

Very sorry for your loss and i am 32 years old and when i do experience a seizure i have no memory of that time period. i feel nothing during the seizure and i see nothing. the only way for me to explain it is that there is darkness and absolute nothing. but thats just me

[Ruth]

Dawn Neff, I do not feel, hear nothing when I have my seizures. If I were to die from my epilepsy seizures, I would not know it. I would not suffer.

A soul mate is hard to lose. You cannot replace a soul mate. The only comfort I can give is that he did not suffer. Ruth

[joey]

Very sorry for your loss and i am 32 years old and when i do experience a seizure i have no memory of that time period. i feel nothing during the seizure and i see nothing. the only way for me to explain it is that there is darkness and absolute nothing. but thats just me

But i must say i do feel a seizure coming before it happens sometimes, but it is not a feeling of pain. it really pisses me off but thats about it.

[theneffs]

Photo: Michael Tompkins

Cassidy Megan, Founder of Purple Day

A little bit about Purple Day...
Founded in 2008, by nine-year-old Cassidy Megan of Nova Scotia, Canada, Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26, people from around the globe are asked to wear purple and spread the word about epilepsy.

Why? Epilepsy affects over 50 million people worldwide. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined.

Why purple? Lavender is the international colour for epilepsy.

Getting involved is easy. Wear purple and encourage others to do the same. Host a Purple Day party or fundraising event at your home, school or business. And most importantly, get real facts about epilepsy by browsing this site and those of our partners.

Cassidy's Story
Hi, my name is Cassidy Megan. I’m nine years old and I have epilepsy. I started Purple Day because I wanted to tell everyone about epilepsy, especially that all seizures are not the same and that people with epilepsy are ordinary people just like everyone else. I also wanted kids with epilepsy to know that they are not alone.

Before I started Purple Day, I was afraid to tell people about my epilepsy because I thought they would make fun of me. After the Epilepsy Association of Nova Scotia did a presentation in my class, I started to talk with the other kids about my seizures. That is when I decided to become a spokesperson for kids with epilepsy.

When I’m not in school or working on Purple Day, I like to act. I have been in a couple of commercials and was the lead in a movie featured in the Atlantic Film Festival. I also like to play outdoors with my friends, take care of my four pets, go to Girl Guides and cheerlead. My favourite thing to do is spend time with my family.

Now that you know a little about me, I’d love to learn more about you. Join the Purple Day Forums and tell us about yourself! And remember - wear purple on March 26 to support epilepsy awareness! Read more..


Photo: Lisa Marie Noseworthy

Cassidy Megan with Murray
NEW! Listen to 'Cassidy's Song' by Josh Kammerman


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Check out Purple Day In the News and read the Big (PURPLE) Story for updates on the biggest Purple Day events.


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Get involved! See the growing list of schools and workplaces already wearing purple and send us your own to add to the list.


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Join the Purple Day Facebook group and get instant updates about Purple Day. And don't forget to donate your facebook status the week of March 26th!


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Click here for a growing list of Writers for Purple Day.


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Watch Cassidy's new TV PSA (requires Quicktime) for Purple Day!


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Watch a video message for Cassidy from award winning children's writer, Sheree Fitch.

[Bernard]

...
But just as research into epilepsy has been hindered by stigma, experts and advocates say the silence about Sudden Unexplained Death in Epilepsy is making it difficult to explore causes and treatments.

“I think this needs to be part of our conversation,” said Gardiner Lapham of Washington, D.C., a board member of the advocacy group Citizens United for Research in Epilepsy, whose son, Henry, died in 2008, at age 4. “The more people talk about it, the more people are going to be interested in getting to the causes of why this is occurring, and ultimately identifying ways to prevent it.”

Last year, researchers at Baylor Medical College in Houston, led by Dr. Jeffrey Noebels, discovered that a genetic mutation linked to a type of irregular heart rhythm called Long QT syndrome could also lead to seizures — suggesting that Sudden Unexplained Death in Epilepsy may result from electrical disruptions occurring in the brain and heart together. And this spring, the team isolated a mutation on a different gene that may cause seizure activity in the brain to direct extra impulses through the vagus nerve to the heart, making it slow and, in some cases, stop beating.

“We are hopeful the findings spur epileptologists to urge patients with epilepsy to obtain an electrocardiogram as part of their full evaluation,” Dr. Noebels said. “If it is abnormal, we expect more genetic information will be obtained, and that we can steadily build a database that tells us how important the incidence of mutations in these two genes really is.”
...
But neurologists say the Baylor findings are far from definitive. “I’m highly respectful of his work,” Dr. Donner said of Dr. Noebels. “I don’t want to downplay it at all. But you’re not going to suddenly go back and find samples of all these people, and all of them will have problems with this channel in the heart and the brain.

“I know sometimes it’s played up as ‘Gene for Sudden Unexplained Death in Epilepsy Discovered,’ ” she went on. “But Sudden Unexplained Death in Epilepsy is going to be multifactorial — no question.”

The lack of awareness about Sudden Unexplained Death in Epilepsy extends to forensic science. “I actually instructed the coroner how to classify Eric’s death, which is kind of mind-boggling when you think about it,” Mr. Wulchin said. “When I explained it, he said, ‘Well, that’s interesting; we’ve had five or six similar cases in Boulder County in the last year.’ So it leads me to believe that it’s vastly underreported.”

Dr. Donner, who is building the first registry of pediatric Sudden Unexplained Death in Epilepsy deaths in Canada, agrees. “I think that underreporting of Sudden Unexplained Death in Epilepsy cases, or underrecognition, is very, very high,” she said, adding, “I want open communications so that we can learn more.”

And Mr. Wulchin says families like his need to be more aggressive in raising overall awareness of the syndrome.

“You have to be your own best advocate, and I think the patients and the parents and the advocacy groups really have to start forcing the issue,” he said. “There’s no magic answer but awareness. Nothing’s going to happen without that.”

http://www.nytimes.com/2010/07/27/he...ner=rss&emc=rs

Thanks to Phylis for bringing the article to my attention.

[mel239]

There was recently someone in the news{a prisoner or newly arrested}that died because of no meds.I recently printed out an article about tachycardia and Sudden Unexplained Death in Epilepsy.A common facet of seizures it has been determined to be tachycardia during the seizure.This is a fast hearbeat,with ocassional bradycardia thrown in-slow heartbeat interictal.I obtained my holter moniter report from 2yrs ago before I was dx with E and having many seizures and it fit.So last week I went to a cardiologist who is putting a month long holter on me Friday.he said numbers dont mean as much as what the actual"waves " will and all the rest of the info.according to this article,heart rhythyms are being looked at now as a connection with Sudden Unexplained Death in Epilepsy. I know my slowest beat one night was 22 and my friend who works at Johns Hopkins in heart transplants said nobodys heart should go that low even in a deep,medicated{anti-epileptic drug} sleep

[ReachForTheStars]

I don't know how relavent this is but last month I died from a seizure. I could hear the ER doctor say I had coded and that my eyes were fixed and dialated. I was aware he shined a light in my eyes, I was also aware my eyes did not react. I had lost all bowel control here at home before EMS got here. I was totally paralized, and I could not speak. I was intubated long enough for my son to get to the hospital and tell me good-bye. I was aware my son was by my side. Then I could hear him pleading for me to come back in quite a stern voice. I have had chronic status for about 16 years. My son found me unconscious in the bathroom floor. If I could have gotton to my bed I would have died apparently in my sleep. However, I couldn't get to my bed. I got so overwhelmingly sleepy. It makes me wonder if the real dnger is because we are sleeping or because the precursor of status makes us so sleepy so we are found in our bed after death. I think it is certainly food for thought.