Seizures & Epilepsy

Epilepsy 101

October 17, 2019

What is Epilepsy?

Epilepsy is a disorder in which a person has repeated seizures over time.

A seizure is a release of abnormal electrical activity in the brain. Seizures can cause a change in attention, behavior, or the ability to remain awake and alert. Seizures often involve uncontrollable shaking (convulsions).

Most people with epilepsy lead normal lives. However, people with epilepsy are at an increased risk of falls, accidents, and injuries. Therefore, it is important to begin treatment right away.

Causes of Epilepsy

Epilepsy has many possible causes. Anything that disturbs the normal pattern of brain cell activity can lead to seizures. This may include:

  • Head injury
  • Birth trauma
  • Bleeding into or around the brain
  • Stroke
  • Certain drugs
  • Prolonged low oxygen
  • Abnormal brain development
  • Certain illnesses, such as meningitis, encephalitis (brain infection), malaria, and other infections
  • An imbalance of nerve signaling chemicals (neurotransmitters)

Epilepsy Symptoms

The symptoms of a seizure can vary greatly from one person to another. Right before a seizure, you may have a warning (aura) that a seizure is about to occur. An aura may include the following symptoms:

  • Fear or anxiety
  • Nausea
  • Feeling like the room is spinning (vertigo)
  • Vision changes, such as seeing flashing lights or spots

Common epilepsy symptoms during a seizure include:

  • Abnormal sensations, such as an abnormal smell or a bitter taste in the mouth
  • Sudden, general body stiffness
  • Convulsions that involve rhythmic jerking of the face, arm, or leg on one or big sides
  • Sudden change in consciousness
  • Appearing to be awake but not responding
  • Appearing to be asleep but cannot be awakened
  • Grimacing, chewing, lip smacking, drooling, tongue biting, or loss of bowel or bladder control

Epilepsy Diagnosis

Your health care provider will ask about your symptoms and take a medical history. Any descriptions from witnesses to your seizures will be very helpful in the diagnosis. A physic al exam, including a detailed neurological exam, is necessary.

Various test may be done, such as:

  • An electroencephalogram (EGG). This is a painless test of your brain waves. In this test, a diagram is created of your brain waves.
  • An MRI of the brain
  • A CT scan of the brain
  • A spinal tap (lumber puncture, LP.)
  • Blood tests to check for signs of infection or abnormal blood chemistry

Treatment

There is no cure for epilepsy, but it is generally treatable. Once epilepsy is diagnosed, it is important to begin treatment as soon as possible.

For most people, seizures can be controlled with medications. The following may also be used:

  • A pacemaker for the brain (vagus nerve stimulator) can be used for people with seizures that are not well controlled by medicine
  • Surgery on the brain

For some people, epilepsy eventually goes away.

Home Care Instructions

  • Follow your health care provider’s recommendations on driving and safety in normal activities
  • Get enough rest. Lack of sleep can cause triggers
  • Only take over the counter or prescription medication as directed by your health care provider. Take any prescribed medicine exactly as directed
  • Avoid any known triggers of your seizures
  • Keep a seizure diary. Record what you recall about any seizure, especially any possible trigger.
  • Make sure the people you live and work with know that you are prone to seizures. They should receive instructions on how to help you.
  • In general, a witness to a seizure should:
    • Cushion your head and body
    • Turn you on your side
    • Avoid unnecessarily restraining you
    • Not place anything inside your mouth
    • Call for emergency medical help if there is any question about what has occurred

Follow up with your health care provider as directed. You may need regular blood tests to monitor the levels of your medicine.

Seizures & Epilepsy

Seizures in the Workplace

October 7, 2019

When I started having nocturnal seizures, I never worried about having a seizure at work because they were only happening in my sleep. When I was first diagnosed, I was in the hospital for a couple days to figure out what why I was having seizures. The company I was working for at the time, knew what was going on and they were VERY supportive. I felt comfortable talking to them about the seizures, my doctors, medications, etc. I became really good friends with my coworkers. After I left the company, they still kept in touch with me and I updated them about my health. When I left the company and joined a new company, I did not want to tell them I had epilepsy. I kind of felt embarrassed, but also I wanted to start fresh and keep my health condition private. When my nocturnal seizures turned into day time (partial complex seizures), I could have a seizure anytime and anywhere.

On the 4th day of my new job, I was going to an event with one with my new coworkers. It was the first time I met her and we were taking a train from San Diego to Anaheim. When we get to the event, I met another co-worker on my team and he was also taking the train back with us. Both of them – super cool. On the way back to San Diego, my coworker offered me a piece of beef jerky, I took one bite and felt an aura. An “aura” is so hard to explain. It is kinda like a deja vu. I feel this sense of fear/anxiety and before you know it, the seizure started so fast. My coworker asked “are you ok” “she is not breathing!”. Everyone rushes to me, trying to help. As soon as I got out of it, I yelled “I am ok, I have epilepsy!”. A passenger who was a doctor asked me if I should stop the train. I said “there was no need”. I looked at my coworkers and say “so ya I have epilepsy…”

The next day at work, my manager says if I need someone to talk to. I guess someone at the event passed away with a heart attack. I didn’t know about this, I thought she was talking about my seizure. So I told her what happened on the train, she was empathetic. On my 4th day of work, everyone new that I had epilepsy.

Everyone asks if people with epilepsy are supposed to tell your manager/coworkers that you have seizures. Honestly, it is personal preference. I really had no choice to decide. My seizures decided to tell them. I’m getting more comfortable in telling people I have epilepsy. Once you educate them about it, you will feel better.

Seizures & Epilepsy

CBD Oil – Charlotte’s Web

February 27, 2019

We started to explore marijuana, CBD, and THC for seizures when we heard about Charlotte’s story. Charlotte has Dravet syndrome, febrile, and afebrile status epilepticus.  She was having 50 generalized tonic clonic seizures a day.  She was also on 8 anticonvulsant medications.

Dravet Syndrome is a severe form of intractable epilepsy and it usually starts before the age of 1. Intractable means the seizures are not controlled by medication.

When Charlotte was 5 years old, she had significant cognitive and motor delays. She required a feeding tube and needed much more care. Charlotte’s family was desperately seeking help. They looked into the benefits of CBD.

They started to test a type of marijuana that was high in CBD and low in THC. Her parents began giving Charlotte low doses of plant extract and started to increase the dose over time.

Charlotte’s results:

  • Month 3; >90% reduction in generalized tonic- clonic seizures and weaned from other AEDs.
  • Month 20: 2-3 nocturnal generalized tonic clonic seizures per month and feeds and drinks by herself and autistic  behaviors have improvement, walking and talking.

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Epilepsy Advocates

Epilepsy Education Conference San Diego

October 25, 2018

I attend the Epilepsy Education Conference at University of San Diego every year in July. People who attend are adults with epilepsy, parents of children with epilepsy, teens and seniors, caregivers, family members, medical professionals, teachers, school personnel and the community. You have the opportunity to attend educational sessions and learn about new brain research, emerging technologies, treatment options, medication and therapies on how to manage seizures.

What I like about this event is that I have more time to ask more questions about this seizure disorder. I also love meeting with others living with epilepsy so we can share our stories and struggles.

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Epilepsy Advocates

Sharon’s Ride.Run.Walk

August 6, 2018

I’ve been volunteering with the Epilepsy Foundation of San Diego for 4 years since I was diagnosed. They have an amazing staff and an awesome support group. Every year, they host an event called Sharon’s Ride. It is a 15 mile bike ride (promoting helmet safety) and a 5k walk/run. I enjoy attending this event because it builds a strong epilepsy community and promotes epilepsy awareness. It also unites people living with epilepsy so they can share their stories.

About Sharon’s Ride

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