Epilepsy Foundation

Information

SUDEP Aware

We are dedicated to promoting knowledge and understanding of Sudden Death in Epilepsy (SUDEP) through education, research and support.

Website: http://www.sudepaware.org
Location: North America
Members: 29
Latest Activity: Oct 24, 2013




Discussion Forum

sudep

Started by kaia hudson Feb 2, 2012. 0 Replies

I was told yesterday that my son was at high risk for sudep.He has been having seizures for 5 years now and we have not found a med. that will control them. His doctor has talked about brain surgery,…Continue

SUDEP In Memoriam Calendar - to honour those we have lost to SUDEP

Started by Tamzin Jeffs Nov 16, 2009. 0 Replies

The pain of losing a loved one to SUDEP persists each and every day and is intensified around the anniversary of passing. We wanted to find a way to honour the memory of those we have lost and to…Continue

Tags: Calendar, SUDEP

SUDEP support in North America

Started by Tamzin Jeffs Oct 5, 2009. 0 Replies

Can you recommend an organisation or support group, in North America, that has helped/is helping you through your SUDEP bereavement? If so, we would love to hear from you.We are collating a list of…Continue

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Comment by Michael Vojtech on September 2, 2010 at 11:22pm
My girlfriend of 16 years died of this on 2-8-2010. She had a seizure overnight in the bathroom. I found her laying on the bathroom floor with a huge cut on her nose that did her in. i never heard her fall to the ground. Her neurologist told me about sudep. She was only 38 years old. And loved helping other people/places, being volunteer at her church and other groups in town. The VNS and all meds she tried did not work that great for her.
Comment by LizaCallahan on April 25, 2010 at 10:10am
Dear Dee, I am so sorry for your horrible loss. It sounds like Donna was quite an amazing person and made a huge difference with her short time on the planet. You must be very proud in deed. Thank you for sharing so much valuable information with regards to SUDEP. I think that joining or supporting walks like Team Donna is a wonderful way to raise awareness. Thank you also for teaching us about Baylor College in Texas and Dr. Alicia Goldman. God bless you and your family for helping so many others who may still have hope. All the best, Liza x x
Comment by Dee07 on April 24, 2010 at 2:56pm
I so want to be a part of this group. I lost my daughter Donna, 41 on 11/15/08 to SUDEP. There has been no place to grieve or support for those of us who suffered the ultimate loss.

For 38 of her 41 years, Donna suffered from uncontrolled seizures. She was a trooper. She volunteered for every new protocol out there. At the time of her death, she was enrolled in DBS Deep Brain Stimulation sponsored by Medtronics. She was under the care of Dr. Carl Baxil and his team at Columbia Presbyterian. She was one of the first candidates in the US to be selected for this trial. Now they are getting FDA approval for further testing and use for Epilepsy. We are so proud of our daughter for again being the pioneer in this area.

Upon her death she became part of a study at Baylor College in Texas under Dr. Alicia Goldman and her team into SUDEP research. In the year and a half they have made such progress into SUEDEP that the door is half way open and sunlight is pouring in. People are now being accepted into their program while they are alive with the hopes of finding a genetic link and a molecular connection (which they have found) to SUDEP. so there are such great strides coming our way for everyone to hang onto to.

For without RESEARCH, there is no hope. So for parents like me RESEARCH is my mantra. I say it loud and long to everyone and anyone who will listen. Never give up hope. Just adopt Donna's slogan "WHATEVER". Since Donna died so much has happened in the way of SUDEP research and awareness through people like Jeff and Baylor college in Texas and CURE. So there is hope at the end of this very dark tunnel.

We in our own way are trying to raise awareness here in NY. There is walk for Epilepsy actually a stroll across the Poughkeepsie walkaway on June 6.

We are walking under Team Donna to raise SUDEP awareness while many may walk to raise Epilepsy awareness. Just to raise the awareness in such a public venue can only help.

So keep us in your prayers for a beautiful day to remember.

Jeff keep up the good work.

Dee
Comment by LizaCallahan on April 24, 2010 at 11:15am
I have a daughter who suffers from uncontrolled seizures. She is 24 years old and takes 3 handfuls of pills everyday and has a vagus nerve stimulator also. She had her first seizure when she was 4 and we were told it was probably just a fluke. I've only learned about SUDEP maybe 2 years ago and felt compelled to make a short film about the horror of SUDEP to raise awareness. It is on youtube and is called SUDEP. http://www.youtube.com/watch?v=E11xB5TXzBU
We are very lucky that Ashley is still alive but my heart is broken for all of the families that have lost someone they love to epilepsy. I hope my film helps to raise awareness. God bless you all.
Comment by Tamzin Jeffs on February 20, 2010 at 12:49pm
If you know of an event to be held in memory of someone lost to SUDEP and that has not been included in our new EVENTS page, please let me know and help to improve SUDEP awareness.
Comment by Tamzin Jeffs on February 20, 2010 at 12:46pm
SUDEP in the US News - Fox 31 News (kdvr.com) (Feb 15, 2010)

"Family Works to Prevent SUDEP": Mike Headrick discusses the need for doctors to inform their patients about SUDEP.
Comment by Laura Peck on January 31, 2010 at 9:34am
I lost my daughter on August 3, 2006, she was 24. I know the frustration of not knowing that someone can die from a seizure. I was aware that someone could have one in the tub and drown or fall and possibly bleed to death if they were injured and no one was around. I was shocked when I was told that she died from a seizure. No one ever mentioned SUDEP. I did work with our coroner and had her death certificate changed to read SUDEP. My daughter was diagnosed at the age of 6 and we went through periods of her seizures being controlled and then too many periods of them not being controlled. At the time of her death, she took 23 pills a day for her seizures. I have learned so much more about E since her death than I ever knew. My daughter left us a beautiful granddaughter, Nicole. She also was diagnosed at the age 6 with E. Thankfully, she is now 8 and has been seizure free for 2 years with meds.
Comment by George Truesdale on January 27, 2010 at 11:20pm
Julie,

Thank you for your thoughts on the loss of our son, Scott.

I had seen the article in Epilepsia that you referenced. Scott had mesial temporal lobe epilepsy and had a right temporal lobectomy in October 2000. The surgery reduced the severity of his seizures but did not stop them. Scott continued to have complex-partial seizures until SUDEP took him about three years ago at the age of 39.

George Truesdale
Comment by Julie Sharp on January 27, 2010 at 1:27pm
I'm sorry about your losses, but I want to ask a question. What type of epilepsy did your children have? I have an article on Alteration of Cardiac Function in Patients with Temporal Lobe Epilepsy: Different Roles of EEG-ECG Monitoring and Spectral Analysis of RR Variability from 1996. It can be found at http://www3.interscience.wiley.com/journal/119143480/abstract . It was originally published in Epilepsia Vol. 38 Issue 3 pages 363-369 and published online 8/3/2005. It suggests "the spectral analysis of RR variability may detect disorders of autonomic cardiac control in patients with epilepsy, even in the absence of abnormal findings during ECG monitoring. This alteration, which is more severe in cases with right EEG focus, could play a role in the pathogenesis of cardiac arrhythmias." Just something to think about - I don't know why the neurologists don't talk to their patients more often about cardiac stuff or even assess them for it. I brought this study up to a neurologist and she said the study was to small. The insurance companies seem to think I have heart problems though! My ECG is normal....Maybe when I stroke out or have a heart attack the dr.'s will listen to me.
Comment by George Truesdale on October 15, 2009 at 8:15pm
Joni,

We are so sorry for the loss of your son. We know exactly how you feel. Although our son, Scott, had had epilepsy since he was six, we had never heard of SUDEP, either. Yesterday was the third anniversary of Scott's death, and we, as you say, can't come to terms with it, either.

No one really knows what causes SUDEP, but the best simple answer we've heard is that sometimes during a seizure, the abnormal brain activity gets in to the autonomic part of the brain that controls the heartrate and breathing and just causes a disruption after the seizure ends.

There is a lot of information about SUDEP on the internet. The sudepaware.org site is one of the most complete and easy to use.

We think that being able to talk to someone, who has also been through this terrrible thing, would be helpful, so we are starting a local SUDEP Bereaved Support Group in our area. We know you are more than a hundred miles from Dallas, but maybe we could provide some mutual support to each other on the phone. Check your eCommunities inbox for our phone number.

We would like to hear from you, if you think it would help.


George and Mary Lee Truesdale
 

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