Holiday Greetings!

Merry Christmas and Happy New Year!

Stay safe and healthy, and may we all work toward seizure-freedom in 2015!

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

Death and Epilepsy—Worldwide Candle Lighting Day, 12/14/14

Today is the 18^th Annual Worldwide Candle Lighting Day.  It is sponsored by a group called The Compassionate Friends.

Death and epilepsy is a serious and difficult issue.  There is Sudden Death in Epilepsy (SUDEP) (see more: 10/23 post) and death by related causes, including suicide and accidents such as drowning (pool or bath), burns (kitchen accidents), and road accidents.

The grief and anger that come from such a death must be incredibly hard to handle.  Especially during the holiday season when everyone is celebrating, that is when you feel the loss most acutely.  I am impressed by those who take their tragedies and turn them into something positive.  Perhaps this is what they have to do.  There is no choice but to go forward. 

The Worldwide Candle Lighting Day will give a chance to honor the memories of those who have been lost to death by epilepsy.  They will not be forgotten.

Shop and Support the Epilepsy Foundation

We are always looking for ways to support epilepsy awareness and fundraise to find a cure. 

Here is an easy way of doing that without even thinking about it.  When you shop on AmazonSmile (Amazon’s charity website), they will donate 0.5% of your purchase price to the Epilepsy Foundation.   I know it doesn’t sound like much, but when we all pitch in, it adds up to a lot.

Thank you so much!

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

Giving Thanks

I have so much to be thankful for.  In general, and as a person with epilepsy, in particular.

I am especially grateful for my family and friends for all their love and support.

I am also thankful for the support of my epileptologist and the entire medical team, including the technicians and staff that make things run smoothly.

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

Gabapentin Recall Alert!

Important announcement:  there has been a voluntary recall for Gabapentin, 300 mg capsules by Aurobindo Pharma USA.  In a particular lot, the capsules did not contain any medication inside of them.  This could cause breakthrough seizures.

For more information, go here:  http://www.epilepsy.com/article/2014/11/fda-announces-voluntarily-recall-batch-gabapentin-300-mg-capsules.

Check immediately with your doctor if you are taking this!

What They Don't Tell You About Vagus Nerve Stimulator (VNS) Surgery

It’s been 5 days since I’ve had my VNS implanted.  I am thankful that the procedure went well—there were no complications such as infections. 

They say that a VNS surgery is simple.  It is an outpatient surgery that takes about one or two hours at most.  Then the patient goes home the same day.  In basic terms, this is true.  However, what they don’t tell you is that there is a preoperative stage

Vagus Nerve Stimulator

I will be getting the Vagus Nerve Stimulator (VNS) implanted tomorrow.  I have tried all sorts of medications, and no combination has worked.  So now I am trying this.  The VNS has the same likelihood of success as any medication.  It is the rule of thirds—for 1/3 are seizure-free (or almost), 1/3 have some improvement in their seizure control, and 1/3 don’t have any benefit or get worse.  Even though the odds don’t seem

Seizure First Aid—Partial Seizures

There are other seizures that are less recognizable.  Most people don’t associate them as being seizures.  They think the person is confused, clumsy, nervous, or is not paying attention.  However, these are epileptic seizures which affect part of the brain.  Therefore, they are called partial seizures.  There are different classifications

Seizure First Aid--Tonic Clonic (Grand Mal) Seizures

There are over 20 types of seizures.  The most known one is called the tonic clonic, or the grand mal.  People recognize it by the stiffening and uncontrolled jerking of the arms and legs—a convulsion. 

Convulsions can be scary to witness.  However, if you follow these guidelines

Veterans Day

Today we honor our brave and dedicated veterans who defend the freedoms we so often take for granted.  Many of them will be severely affected by epilepsy.  Over 440,000 soldiers returning from Iraq and Afghanistan will experience Traumatic Brain Injury and more than 100,000 will develop Post Traumatic Epilepsy.  We must fight to find a cure as they fight to keep our country free.

Thank you for your service!

Source:  Citizens United for Research in Epilepsy (CURE)  https://www.facebook.com/CUREforEpilepsy?fref=nf

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.

Epilepsy Awareness Month

It’s November, and that means it’s National Epilepsy Awareness Month.  The Epilepsy Foundation has launched the #DareTo campaign to raise awareness. 

 http://www.epilepsy.com/release/2014/10/epilepsy-foundation-dare-understand-more-about-seizures-because-someone-you-know 

They also adopted a new logo to reflect the “BOLD and aggressive stance the Foundation is taking to make a difference for people living with epilepsy.”

Dare To talk about it and learn!

Halloween—The Purple Pumpkin Project

Halloween is coming up.  In American culture, that means dressing up and trick-or-treating.  Ghouls, goblins, witches roaming the streets one spooky night.  The reward of a bulging bag of candy after a night’s work is satisfying. 

Carving the pumpkin to make Jack ‘o Lanterns are just as important.  There is

SUDEP Awareness Day

Today was the first SUDEP Awareness Day.  That is, Sudden Unexplained Death in Epilepsy.  Death is one of those things that people in the epilepsy community don’t like to talk about.  For decades, it has been hidden. 

Fish Oil Research

You probably know that fish oil is good for your eyes.  There is new research that suggests that fish oil is also good for seizure control. 

According to a study done by UCLA (http://www.clinicalneurologynews.com/home/article/low-dose-fish-oil-cut-seizures-in-a-small-randomized-trial/654f7bb75b4c86dba1d97477a49f0cdf.html), on a low-dose fish oil treatment, there was a reduction of seizure frequency by 33.6% in patients with difficult-to-control epilepsy.

The average number of seizures on a low-dose treatment was 12.18 per month versus 17.67 per month on a high-dose regimen. For those not receiving any fish oil, the average number of seizures was 18.34 per month. 

There is much more research to do on this topic to find conclusive answers.  Let's keep our eyes on this for the future.  

Travel and Epilepsy—Lessons Learned

I am back from my reunion!  I had a great time seeing all my old friends from high school.  It was good to reconnect and spend some quality time together.  As usual, it seemed to go by too quickly, however. 

The travel to Birmingham, Alabama, where my reunion took place, went smoothly.  However, coming home was another story.  The original flight out on Monday, 10/6, was delayed due to mechanical problems, and then canceled.  The same happened to the flight I was rebooked on later that afternoon.  It was stressful, to say the least,

Travel and Epilepsy

I will be traveling to my 25^th High School reunion tomorrow, so I thought I would discuss travel and epilepsy.  There are some considerations people with epilepsy need take.  Especially when flying, there are some things that they should do to travel safely. 

Medical Marijuana and Reminder about Mayo Clinic Webinar

A hot topic in epilepsy research these days is in medical marijuana.  There have been anecdotal reports that marijuana has helped certain patients with severe forms of epilepsy, in particular, a childhood epilepsy called Dravet Syndrome. 

Support for medical marijuana research has been erratic because

Mayo Clinic Webinar—Pediatric Epilepsy Treatment Options

The Mayo Clinic will host a webinar about pediatric epilepsy treatment options on Thursday, September 25, 2014 at 12:00 Noon Central Time (1:00 pm Eastern, 10:00 am Pacific, 5:00 pm UTC/GMT).

If you are interested, here is the website to register: http://connect.mayoclinic.org/discussion/pediatric-epilepsy-treatment-options/ 

I hope it will be helpful. 

Surgery Options for Epilepsy

On Friday, I went to the epilepsy support group meeting of the Epilepsy Support Network of Orange County.  We had an excellent speaker,Dr. Mary Zupanc, pediatric epileptologist of Children’s Hospital of Orange County (CHOC) and University of California—Irvine.  She talked about new surgery options for epilepsy. 

Effects of Epilepsy on the Body—Seizures and Side Effects Infographic

Here is a useful, interactive chart about the effects of epilepsy on the body.  It defines the different kinds of seizures as well as describes the most common side effects in a simple, straightforward manner.

http://www.healthline.com/health/epilepsy/effects-on-body

Thanks to Maggie Danhakl of Healthline Networks, Inc.

9/11 The Military and Epilepsy

Memorial From World Trade Center Tower 1

It’s the thirteenth anniversary of 9/11—the World Trade Center bombings in 2001.  This is when we officially started the War Against Terrorism.  Since then, our military has been on high alert. Our troops have been deployed multiple times to Iraq and Afghanistan.  They have done tours all over the world at a moments’ notice. 

Catch-22

I think I speak for everyone affected with epilepsy when I say that it is unwanted.

We don’t want seizures.  They are annoying and painful.

They make us DIFFERENT.  However, people with epilepsy should not be ashamed.  They do not deserve the discrimination they often encounter.  In this way, we are much like other minority groups.  There is a difference, however.  For us,

A Testimonial to Fundraising

I recently read a disturbing article by Felix Salmon from Slate that argued against donating to, as he called them, “disease-specific charities.”  This was in response to the “ice bucket challenge” to raise money for ALS.  I have to admit, the idea of pouring a bucket of ice water over your head doesn’t seem to be the best thing to do to raise money.  Especially since it wastes water during this time of drought in California.  Nevertheless, the concept is unique and has made people pay attention to the disease as no one had before.

Mr. Salmon speaks primarily in terms of ALS.  However, his statements have

Useful Links--Epilepsy 101 and Best Books list

If you are new to epilepsy or if you want a refresher about what it is and all the types of seizures, treatment options, and first aid, among other things, this is the place to start.  Epilepsy101 from the Epilepsy Foundation of America website provides detailed, understandable, and practical information for those affected by this disorder. 

Also, here is a Comprehensive Best Book List, courtesy of Phylis Feiner Johnson of Epilepsy Talk blog.  It has books for people of all ages.  Well-researched, this is an excellent resource for people to open a discussion about epilepsy.

History of Epilepsy

Spirits.  That’s what people associate with seizures.  Carried off by ghosts.  Epileptics!  Not people with epilepsy.  What’s the difference?  “Epileptics” are creatures that are enveloped by seizures, fits of shaking and unconsciousness.  All that’s scary

A Little Bit About Me

As I mentioned, there are more than 20 kinds of seizures.  Seizures come in all shapes and sizes.  That is why they are so hard to control. 

You can get epilepsy at any time, and the kind of seizures you have can change over the course of your lifetime, or if you are lucky, they may stop altogether.  Some children “grow out of” their seizures, never to be bothered by them again.  However, others

What is Epilepsy?

First, what is epilepsy and what is a seizure?  This is a basic question, yet many people don’t seem to know the answer.  Even the experts are always refining their technical definitions of this condition. 

In his book A Guide to Understanding and Living with Epilepsy, Orrin Devinsky defines epilepsy and seizures clearly.  A seizure is “a brief, excessive surge of electrical activity in the brain that causes a change in how a person feels, senses things, or behaves.”  Epilepsy is “a disorder in which a person has two or more seizures

Welcome!

Welcome to Soo's Epilepsy Corner! My name is Soo Ihm. I am from Southern California. 

 In my blog I'm going to be sharing information about epilepsy, in an effort to educate and advocate. I will tackle issues such as the history of epilepsy, new medications, traditional surgery, Vagus nerve stimulator, other new devices under development, diets, alternative treatments (herbs, acupuncture, marijuana, etc.), stigma, first aid, side effects, SUDEP (Sudden Death by Epilepsy).  

This is only the beginning, since epilepsy remains a mystery to scientists as well as they continue to search for a cure.  Every bit of awareness we can spread to the community about what epilepsy is the better, since it is still very misunderstood and feared by many. 

I hope you find this blog useful and engaging.

Soo