Sudep?

[xenome]

I have recently become aware of this. Ny neurologist never mentioned it. Can someone give more info on it, especially how serious it is, and how common? Should I be concerned?

[RobinN]

Nor ours xenome... but I have learned more about it here at CWE.

hello

I hope this link helps.
Others that have experienced it within their families might be along to discuss it further.

[xenome]

Thank you.

[RobinN]

This is also a good recent thread:

It is not length of life, but depth of life

Are you doing okay?

[xenome]

No, Im not okay.

[RobinN]

How can I help?
You can PM (private message) me, if you need to.

click on my name and in the drop down list choose Private Message

[xenome]

Thanks for offering help, I appreciate it, but I dont think you can. I just mean Im not ok with having seizures, cause it makes it so I cant work, drive, date, have kids, and you know, everything I wish I could do. My life and my future were taken from me.

[RobinN]

It might seem like that right now.
Might I suggest a book I just read, You might find it in the library.
Epilepsy: a new approach
It has many alternatives for you to try.
There are others here on CWE that have found love, and support. Why do you think you are different?
I understand that not driving is inconvenient. Can you possibly find work at home?
Are you involved with a local support group?

My daughter is 16 and I can't possibly think that her life has been taken away from her.
Is it more difficult... yes. I believe we will find and answer.

[tinasmom]

Hello xenome and welcome to this wonderful forum. I am very familiar with Sudden Unexplained Death in Epilepsy. My daughter died last year from a seizure (Sudden Unexplained Death in Epilepsy), she was 24. She did date, and was engaged to be married. She also had a daughter 6 years ago. Don't think that you can't do things that you want to because you have Epilepsy. Did you know that Van Gogh had Epilepsy? You may have Epilepsy, but it doesn't have you. My daughter never drove or worked. She led a very normal life except for the seizures. Her seizures were not under control and her neurologist just kept adding more meds.

You can accomplish anything that you set your mind to. Set your goals and work as hard as you can at reaching them. You might want to find a local Epilepsy Foundation close to you to help you find work and be support for you.

[brain]

Xenome

I don't know if this can be of any help, but
click on this popular web link below in reference
to Sudden Unexplained Death in Epilepsy


Epilepsy.com - Professionals - Hallways Conversations - SUDEP

[Shutterbabe]

Xenome, I learned about Sudden Unexplained Death in Epilepsy on my own. When I asked my faithful family physician, who has been overseeing my care for 20 years, and now keeping in touch with my neurologists, he looked away, unable to meet my eyes. I had questioned him about this possibility because of the intensity of my seizures as well as my age factor-56.

I believe that I have had some close calls over the last 4 years but I have made many positive changes in my life in the wake of Epilepsy. I have great appreciation for the ones I love, the beauty of each new morning.

As for your fear of not having a wonderful life because of seizures: I live alone in Central Mexico,
I have meaningful (sometimes!) relationships, deep friendships, I work when I am able, I travel when I feel strong. In some ways my life has never been more complete because I do not take anything for granted.

We all know that life is not quite the same with E....but there is a life. It might be very different, but hopefully not a lesser thing once you get the hang of it.

Warm thoughts to you.

[Dutch mom]

Reuters Health

Sudden Death During Epileptic Seizure Recorded on Ambulatory EEG

NEW YORK (Reuters Health) Dec 21 - An EEG recording of a sudden death that occurred during an epileptic seizure show abrupt irreversible cerebral electrical shutdown. "In other words," physicians in the UK report, "the death occurs secondary to primary brain failure."

Dr. B. N. McLean, at Royal Cornwall Hospital, and Dr. S. Wimalaratna at John Radcliffe Hospital in Oxford report the case of a woman with epilepsy who died during a seizure while undergoing ambulatory EEG.

According to their paper in the December issue of the Journal of Neurology, Neurosurgery and Psychiatry, the middle-aged woman had a history of epilepsy since age 4. Her seizures had been refractory to treatment with multiple antiepileptic medications.

At the time of death, she was taking lamotrigine 1000 mg/day and sodium valproate 1200 mg/day. She was found dead on the floor of her home.

The EEG recording, set up at 13:00 the previous day, showed increasing cerebral activity as the day progressed. "Prolonged bursts of high amplitude spikes began to appear towards midnight," the report indicates, and continued to worsen until paroxysmal activity developed into continuous spike wave discharges, with a seizure onset at 08:27:18.

"The seizure activity abruptly terminated at 8:28:14 and the EEG became a 'flat line'." Based on movement artefacts that decreased in frequency on the recording, death occurred at 08:31.

Drs. McLean and Wimalaratna cite two similar case reports published in 1997 and 1998, in which a seizure was followed by sudden electrical silence. They conclude that cardiorespiratory failure that leads to death is such cases is centrally mediated by "cerebral electrical shutdown."

They suggest that "timely intervention (attempts at resuscitation) at early stages may reverse the consequences of cerebral electrical shutdown."

J Neurol Neurosurg Psychiatry 2007;78:1395-1397.
http://jnnp.bmj.com/cgi/content/abst...etype=HWCIT&ct
__________________

[RobinN]

WOW ... hope there is a study of how the double dosing of the meds might have had a hand in how her body responded or actually did not respond to this episode.

May she rest in peace and may something be learned from her untimely death.