Announcement: Epilepsy Support Network of Orange County Support Group Meeting

This Friday, March 8, 2019, the Epilepsy Support Network of Orange County will hold its monthly support group meeting. This month’s theme is “March Medication Madness!” There will be two separate presentations: one for parents of young children and one for adults.  The speaker for the parents will be Dr. Grace Lee, pharmacist at Children’s Hospital of Orange County (CHOC) and the speaker for the adults will be Dr. James Park, epileptologist at HOAG Hospital.

Happy Holidays!

It’s so hard to believe that another year is almost over! It is already Christmas Day in much of the world! I hope you all received what you asked for.

My wish for all of us is to have a healthy, happy, prosperous, and seizure-free new year!

Happy Thanksgiving!

It is that time of the year again, when we give thanks for the things we have, and soon we will be in the gift-giving season. In general, this is a time of good cheer and connections with family and friends. However, for people with epilepsy, it can be difficult at times. The hustle and bustle of the holiday is often stressful, which can cause seizures. Things like staying up late to socialize and going shopping among large crowds especially are especially seizure-inducing. Of course drinking alcohol is an obvious one to watch out for.

In order to regulate yourself and try to have as few seizures as possible, try to eliminate as many seizure triggers as you can.

Wishing you all a very Safe and Happy Thanksgiving!

Epilepsy Blog Relay—November 2017

Did you know that Melanie Griffith has epilepsy? The Living Well with Epilepsy blog is once again hosting its month-long Epilepsy Blog Relay and this story is what the first blog entry is about.

I hope you follow along and read about the experiences of different people dealing with this condition. It covers such a wide spectrum, as there are more than 40 types of seizures and more than 30 types of epilepsy syndromes.

It will give you a sense of what their lives are like, as patients or caregivers, and the difficulties they have to face each and every day.

Resources

https://livingwellwithepilepsy.com/2017/epilepsy-blog-relay/nov-17-ebr-posts/melanie-griffith-living-with-epilepsy.html

https://livingwellwithepilepsy.com/

https://livingwellwithepilepsy.com/category/epilepsy-blog-relay/nov-17-ebr-posts

https://www.epilepsy.com/make-difference/public-awareness/national-epilepsy-awareness-month

Happy Holidays!

It is that time of year once again!  It is hard to believe the holidays are upon us once again!  I hope you are enjoying yourselves with family and friends.  This should be a joyous time of celebration for all.

Back To Basics—Definition of Seizure and Epilepsy

Epilepsy is a chronic disorder which is characterized by recurrent, unprovoked seizures, often with no known cause.  The word unprovoked is important here because someone can have one seizure due to alcohol, sudden head trauma, lack of sleep, or extreme stress.  That individual seizure is not counted as epilepsy. 

Dravet Syndrome

Dravet Syndrome (http://www.epilepsy.com/learn/types-epilepsy-syndromes/dravet-syndrome,

http://www.dravetfoundation.org/dravet-syndrome/what-is-dravet-syndrome) is one of the most difficult-to-control forms of epilepsy.  Also known as Severe Myoclonic Epilepsy of Infancy (SMEI), it is characterized by developmental delays, frequent

Seizures and Syndromes

Epilepsy is very complicated because it comprises a spectrum of seizures and syndromes. Someone who has two or more unprovoked seizures (e.g., not related to alcohol, drugs, flashing lights) within 24 hours is considered to have epilepsy. There are two broad classifications of seizures:  generalized and partial.  Within these main groups, there are at least 10 types.

Epilepsy Documentary

PBS has a documentary about epilepsy, “Seized: Inside The Mystery of Epilepsy.”  It highlights the cases of a few patients and explains epilepsy.  I highly recommend it.  In my opinion, it’s about time we had more publicity and education out there.  Watch it here:

http://www.pbs.org/program/seized-inside-mystery-epilepsy/

Veterans Day

Today is Veterans Day.  We honor our military on this day in recognition of their service to our country.  Without them, we would not be the strong nation we are today.

However, as a country, we are failing in our duty to provide for them.  Many

5th Annual Shark Tank Competition

The Epilepsy Therapy Project is soliciting entries for its upcoming Shark Tank Competition, to promote innovative ideas to help people with epilepsy and seizures.  The winner(s) will win as much as $200,000 and international recognition for their idea(s).

New Device for Treating Seizures--AspireSR

I apologize for not writing lately.  I have been having a challenging time with my Vagus Nerve Stimulator.  I will have to check about modifying the stimulation level with my doctor.

That being said, there is a new version of the Vagus Nerve Stimulator called the AspireSR.  It provides stimulation in response to increased heart rate, which is known to cause seizures and sudden death in epilepsy.

There have been anecdotal success stories with it already, which is promising.  You can read about it here:

http://www.cbsnews.com/news/teen-with-epilepsy-gets-device-prevent-seizures-sudden-death/

http://epilepsytalk.com/2015/06/20/exciting-news-2/

http://www.epilepsy.com/article/2015/6/new-approach-vns-therapy?utm_source=Epilepsy+Foundation&utm_campaign=648211f7e2-Pro_News_6_17_15&utm_medium=email&utm_term=0_cf0feb6500-648211f7e2-12023081

I hope all of you are well.  Stay healthy!

Comprehensive Epilepsy Medication List

I came across a pretty comprehensive anti-seizure medication list on the Epilepsy Foundation website.   Since most people with epilepsy take medications to treat their seizures, this resource is invaluable.  It provides the generic and brand name information about the drugs and addresses questions such as

“how does this medication work?”

“what are the most common side effects?” 

“what are the most serious side effects?”

“how does it affect women and the elderly?”

“how does it interact with other drugs?”

The list goes on and on, and covers many, many medications.

It is an excellent list for those interested in doing research on new medications.

http://www.epilepsy.com 

http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/seizure-medication-list

Reminder—Epilepsy Summit, Manhattan Beach Early Bird Registration

Today, I received this reminder email from Nathan Jones of the Epilepsy Foundation of Greater Los Angeles regarding the upcoming Epilepsy Summit in Manhattan Beach, California.  I am passing along what he wrote, including a link to a video of a man having a seizure while sky diving.

Early Bird Registration ($50/person) is available until March 10.  You can also apply for partial scholarships to attend.  See below under "Don't Forget!"

Airline Preboarding Policies

Flying home from the holidays on Southwest Airlines reminded me that money talks.  I know it’s a cliché, but that’s why this metaphor rings true.

I had gotten authorization to preboard the flight and learned that I would be boarding after the Group A passengers.  For those of you who are not familiar with how Southwest operates, they have open seating and board according to Groups (A, B, and C) and priority numbers (1-15, 16-30, 31-45, 46-60).  The sooner you check in, the better your chances of boarding earlier.  If you pay extra, then you get the privilege

EEG Training Lacking

EEG (Electroencephalography) is critical to epilepsy diagnosis.  It is the primary test to determine if someone has epilepsy or not.  If the EEG is misread, it often leads to a misdiagnosis of seizures and epilepsy.  According to the article “EEG Training for Neurologists is Inadequate,” there is a lack of education in EEG reading.  In most medical education programs, it is not required for neurology residencies, but offered

Vagus Nerve Stimulator (VNS) Update

I have had my VNS for almost one month.  It was activated at the beginning of December.  I have had quite a challenge with it so far.  As I wrote in my previous post, the surgery and recovery are no piece of cake.

After a week back from the surgery, I was finally able to take off the dressings from my neck and chest.  The scars are still there, however.  I’m guessing it will take another two or three weeks until they are completely healed.  In the meantime, I have to be

Embrace—Seizure Recognition Wristband

A friend of mine brought this to my attention.  It may give us another reason for hope.

There is a new device called Embrace created by Empatica.  It is a wristband that detects heightened electrical signals from stress or other factors, and is potentially an indicator of a seizure.  There is an accompanying wristband worn by a family

Light Therapy to Stop Seizures

A team of scientists at the University of California, Irvine has done some research using light therapy for treating seizures.  They presented their findings to the 44th annual meeting of the Society for Neuroscience on Monday, November 17. 

Read about it here:

http://www.livescience.com/48817-light-therapy-stops-seizures.html

Mexican female doctor has epilepsy

Epilepsy is a worldwide problem.  As I’ve mentioned before, in some parts of the world, the stigma of having seizures is still a huge hurdle.  In Mexico, people are still afraid of it and do not feel comfortable talking about it.

There is a female physician named Amparo who has epilepsy and has gone through great challenges trying to get her seizures under control.  You can read her story here.  (http://oneintwentysix.com/2014/11/03/amparo-a-physician-in-mexico-with-epilepsy/?blogsub=confirming#blog_subscription-2)

It is truly inspiring.  She is making her mission to create awareness about and to stop discrimination toward people with epilepsy.