Seizures & Epilepsies

Anti-seizure medications (ASM) are usually the first line of defense, but only 2/3 of people with epilepsy achieve seizure control with medication alone. If a medication doesn’t work, doctors may explore another medication (or combination of medications) in conjunction with treatment options beyond medication.

For many years, there were only a handful of anti-seizure medications drugs available to control different types of seizures. Since 1993, many more ASMs have been approved. Doctors strive to find the appropriate medication(s) for your epilepsy type and syndrome with the least amount of side-effects to control seizures. An anti-seizure medication needs to reach a therapeutic level in the blood in order to be most effective. This will vary from person to person and from medication to medication. Blood work helps determine how much medicine is in your body and how your body is tolerating the medication (learn more about blood levels). It is also important not to exceed the most effective level as that can increase side-effects.

NEVER stop an anti-seizure medication abruptly or attempt to wean yourself off a medication without doctor supervision. Medications must always be taken each and every day as prescribed (see tips on remembering to take your medication and contact us for a free pill box).

If you are thinking of using alternative therapies as a form of treatment (like medical marijuana and CBD), speak with your treating specialist as some supplements may trigger or increase seizure activity.

Seizure Medication List

1. Classic Ketogenic Diet. The “classic” ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy. Ketosis is a state of burning diet fat as instead of glucose that results in blood ketone level of greater than 0.5mmol/L. It is prescribed by a physician and carefully monitored by a dietitian. The diet requires careful measurements of calories, fluids, and proteins. Foods are weighed and measured.

• The name ketogenic means that it produces ketones in the body. (keto = ketone; genic = producing) Ketones are formed when the body uses fat for its source of energy.
• Usually the body uses carbohydrates (such as sugar, bread, pasta) for its fuel. Because the ketogenic diet is very low in carbohydrates, fats become the primary fuel instead. The body can work very well on ketones (and fats).
• Ketones can be detected in the urine, blood, and breath. Ketones are one of the more likely mechanisms of action of the diet, with higher ketone levels often leading to improved seizure control. However, there are many other theories for why the diet will work.

Tip: Learn more through our friends at the Charlie Foundation for Ketogenic Therapies or visit epilepsy.com.

2. Modified Atkins Diet (MAD). The modified Atkins diet is a change to the traditional ketogenic diet to make it less restrictive but is very similar in efficacy. The diet is a “modified” Atkins diet as it allows for less carbohydrates than the traditional Atkins diet (15 to 20 g/day) and more strongly encourages fat intake.  MAD is one of three “alternative diets” used to treat patients with epilepsy. Learn more about MAD.

Although the foods are very similar, there are key differences between the modified Atkins diet and the ketogenic diet.

• There is no fluid or calorie restriction or limitation with MAD.
• Although fats are strongly encouraged, they are not weighed and measured. Most patients will consume plenty of dairy and oils.
• One of the biggest differences is that there are no restrictions on proteins. Typically 35% of calories for a patient on the MAD come from protein.
• Foods are not weighed and measured, but carbohydrate counts are monitored by patients and/or parents.
• It is started outside of the hospital and the person does not need to fast before starting the diet.
• Lastly, foods can be eaten more freely in restaurants and outside the home, and families (and neurologists!) can do it as well.

3. Medium Chain Triglyceride (MCT). Learn more about MCT.

4. Low Glycemic Index Treatment (LGIT). The LGIT for epilepsy was developed in 2002 as an alternative to the ketogenic diet (KD) for treatment of intractable epilepsy. The LGIT monitors not only the total amount of carbohydrates consumed daily, but focuses on carbohydrates that have a low Glycemic Index. Learn more about LGIT.

• What is Glycemic Index? The Glycemic Index of a food refers to how high that food raises your blood glucose after eating, compared to a reference food such as sugar.
  There are different features of foods that affect glycemic index. For example, dietary fiber reduces glycemic index. The rate at which a food is digested and absorbed also affects its glycemic index – so buttering a piece of bread can actually reduce its glycemic index.

Surgery is an option for some kinds of seizures. There are various types of surgeries. Please consult a team who are experienced with epilepsy surgery to determine whether or not surgery is appropriate and what type of surgery is appropriate for you. As with other treatment options, the decision to proceed with surgical treatment option should involve the person with epilepsy (if possible) and the family members.

1. Focal Resection
   • Temporal Lobe Resection
   • Extratemporal Resection (frontal, parietal, and occipital)
2. Lesionectomy
3. Multiple Subpial Transections
4. Laser Interstitial Thermal Therapy
5. Anatomical or Functional Hemispherectomy and Hemispherotomy
6. Corpus Callosotomy
7. Stereotactic Radiosurgery

Three neurostimulation devices currently approved for the treatment of drug resistant epilepsy

1. Vagus Nerve Stimulation (VNS). VNS is approved for treatment of focal epilepsy when surgery is not possible or does not work. A small electrical generator is implanted under the skin over the chest. A wire, called a “stimulator lead,” is then attached onto the vagus nerve located in the neck. The generator stimulates the vagus nerve on a set schedule. Over time this helps to reduce the number and severity of seizures a person has. It is effective in over half the people who try it.
2. Responsive Neuro Stimulation (RNS). RNS is a device that can record seizure activity directly from the brain and delivers stimulation to stop seizures. The device, also called an electrical generator, is implanted in the skull. Electrodes are placed on or in the brain in the area where seizures begin. The device detects seizure onset and then delivers an electrical stimulation to stop the seizure.
3. Deep Brain Stimulation (DBS). DBS surgery involves implanting an electrode into the brain and placing a stimulating device under the skin in the chest. The brain electrode is implanted through a small hole made in the skull. Advance magnetic resonance imaging (MRI) and a computer navigation system are used to guide the electrode to the exact “target” position deep in the brain. The stimulator device placed in the chest is similar to a pacemaker and is connected to the brain electrode. The device sends signals to the brain electrode to stop signals that trigger a seizure. DBS surgery for treatment of seizures was approved by the U.S. Federal Drug Administration (FDA) in 2018. It has been approved in Europe, Australia and Canada for several years.

Most often SUDEP occurs during or right after a seizure. SUDEP may have more than one cause or result from a combination of problems. Difficulty with breathing, heart rhythmns or brain function may contribute to SUDEP. Research is being done to look at all possible causes and potential genetic links.

Approximately 1 in 1000 people with epilepsy die from SUDEP each year. The greatest risk factors for SUDEP are uncontrolled generalized tonic clonic seizures (also called convulsions) and seizures that happen at night. Missing doses of seizure medicine and drinking alcohol may lead to poor seizure control and affect a person’s risk for SUDEP too. While SUDEP can occur at any time, it happens more often in people who have had seizures for many years.

The first step to lowering your risk for SUDEP is to take your seizure medication regularly and at the right dose. If seizure medicine along doesn’t control seizures, talk to your doctor about other ways to possibly control your seizures. Ask for a referral to an epilepsy specialist at an accredited epilepsy center. Learn how to avoid seizure triggers, get enough sleep and don’t use alcohol or drugs. It’s important to make sure other people in the home know seizure first aid too.

• What is my risk for SUDEP?
• What can I do to reduce my risk?
• What should I do if I miss a dose of my medication?
• What should I do if I have a seizure?
• Can I be referred to an epilepsy specialist?
• Where can my family obtain training in seizure first aid?
• What activities or behaviors increase my risk?
• What should I tell my family about my epilepsy and SUDEP?
• I’m having seizures, should we consider a change in my treatment?
• Should I consider using a device to warn someone that I’m having a seizure?
• I have seizures in my sleep, should I consider sharing a bedroom?

Prevent drowning and injuries from slips and falls in the bathroom:

• Take showers instead of baths.
• Leave the bathroom door unlocked. Make sure someone is close by in case you have a seizure while showering.
• Hang the bathroom door so it opens out, not in. This way someone can get in easily if you need help.
• Use safety glass for mirrors and shower doors.

Take care when cooking:

• Get pre-sliced foods so you don’t need to use knives when alone.
• Use the microwave instead of a stovetop when you’re home alone.
• If you use a stovetop, use back burners to prevent spilling hot foods.
• Wear long thick oven mitts to take food out of the oven.
• Try not to carry hot dishes. Try sliding them along a counter or use a cart.
• Use cups with lids for hot drinks.
• Use non-breakable dishes, cups, and cookware.

Stay safe from burns and fires:

• Make sure someone is nearby when you use the stove, grills, or fireplace.
• Iron clothes or light candles only when someone is with you.
• Look for appliances that have automatic shut-off switches.
• Put guards in front of radiators, heaters, and fireplaces. Only use space heaters that can’t tip over.
• Check your smoke alarms once a month by pushing the test button.

Keep yourself safe while sleeping:

• Sleep in a bed that is low to the floor if you have seizures at night.
• Consider using a seizure alert device so someone will know if you have a seizure and can check on you.
• If you have shaking movements during a seizure, move your bed away from furniture or the wall so you don’t injure yourself during a seizure.
• Sleep on your back or side; don’t sleep face down.

Prevent injuries from falls:

• Pick up or put away things you could trip over, like cords, toys, or shoes.
• Store things you use often where you can reach them easily.
• Put padding on furniture with sharp edges or buy furniture with rounded or soft edges.
• Install soft flooring, like carpets with thick padding.
• Use soft “outdoor carpeting” on hard surfaces like stairs or a deck.

Work safely outside:

• Use a lawn mower that stops when you let go of the handle.
• Make sure that power tools have safety guards and will stop running if you let go.
• Always wear protective eyewear, footwear, and gloves.

You have seizures and you have a child. How is this going to work? You can’t help but wonder, “What happens if I have a seizure while taking care of the baby?” This is a normal question and one you should talk about with your loved ones and health care team. Then develop a plan to make your home safe for your family. Try these simple parenting tips to make life easier.  Remember, what you need to do may vary with the type and number of seizures you have, so talk about these ideas with your doctor or nurse. If you have frequent seizures, especially with loss of awareness, consider having someone help while you care for your baby.

• When childproofing your house like all parents do, take an extra step. Get down on the floor and think what would happen if you fall. What could hurt you or your baby?
• Sit in the middle of the bed, on the couch, or on the floor when holding or feeding your baby.
• Change, dress, and sponge bathe the baby using a portable changing pad on the floor.
• Strap the baby snugly into a stroller with breaks or an infant seat when you feed him.
• When home alone, use a playpen or play yard with doors and gate. If you don’t feel well, put the baby down in this enclosed area.
• Keep baby supplies on each level of the home to avoid climbing stairs.
• Don’t carry hot fluids or dangerous items near the baby.
• If your seizures are sensitive to sleep deprivation, use help to feed the baby at night.
• Always keep your epilepsy medicine (and other medicines) where children can not reach them.
• When walking outside with a child who can wander, consider using a safety harness to keep your child close in case you have a seizure.
• If you feel a warning or seizure, lie down on your side on a soft surface.
• Carry a cell phone with you, even in the house, to call for help if needed.

Neurologists and pediatric neurologists are trained in diagnosing and treating epilepsy and many other neurological disorders. Some have more experience than others depending on their amount of actual training in epilepsy and whether they currently focus on and remain current in epilepsy diagnosis and treatment. Many neurologists also specialize in epilepsy.

In some areas, where there are neurologists are scarce, people with epilepsy will be treated by pediatricians, internists, family physicians and neurosurgeons.

Specialized care for people whose seizures are difficult to control is available in large medical centers and university medical centers with “Epilepsy Centers”.

Epilepsy Specialists, also known as Epileptologists, undergo 1-3 extra years of training in epilepsy and EEG, beyond their neurology training.

If I have seizures, do I need to see a neurologist who specializes in epilepsy? This is recommended. Request that your primary doctor or pediatrician refer you to a neurologist who specializes in epilepsy. The epilepsy specialist can work with your primary doctor to help manage your seizures.

For good diagnosis and treatment, the most important thing is a very careful history done by a concerned physician. The history is then supplemented by an examination including a neurological exam and other ancillary test including electroencephalography (EEG) awake and asleep, magnetic resonance imaging (MRI), positron emission tomography, and blood studies. The diagnosis of the type of seizure and epilepsy syndrome are very important in treating patients because they determine the evaluation, the treatment more likely to be effective, and the prognosis of that patient.

The epilepsy specialist will work with your primary doctor to:

1. Verify that your seizures are epileptic in nature.
2. Diagnose and define your type of seizure types and your epilepsy syndrome.
3. Determine the likely cause of your epileptic seizures (if known).
4. Work with you to identify and stop your trigger factors.
5. Establish an early treatment plan based on #1 to #3 and discussions with you and your family.
6. Work with you to monitor seizure control and recognize adverse effects of treatment and of seizures in order to balance the effects of both with your quality of life.
7. If first treatment plan does not work, explore other treatment options with your doctor.

Comprehensive epilepsy centers have the resources to diagnose and treat epilepsy in all its forms and focus on either curing or alleviating the epilepsy by stopping or reducing the seizures.

To locate a local epilepsy center or epileptologist, visit 

We encourage the community affected by epilepsy to learn more about research in progress and how participation in research might benefit the community at large.

We are glad to provide information on studies that have Institutional Review Board approval and are overseen by a medical center, hospital or clinic with an ethics review committee. To the extent information is made available to us, we are glad to provide the study name, a brief description of the study, a description of study participants needed, and a link to more study information and/or to contact information.

The Epilepsy Foundation’s Clinical Trials Portal connects participants to current trials and observational studies to help accelerate development and testing of new treatments. https://www.epilepsy.com/clinical_trials

Talking To Your Doctor (Brochure)
Diagnosing Epilepsy (Brochure)
Seizure Triggers (Brochure)
About Partial Seizures (Brochure)
Tips+Tools for Living with Epilepsy
Seizure Action Plan (Form)
Treatment Options (Brochure)

Seizure First Aid
First Aid for Seizures
First Aid-Complex Partial (diagram)
First Aid-Convulsive or Generalized Tonic Clonic Seizures (diagram)

Safety+Seizures
Safety+Seizures
Safety-Thermal burns
Home Safety (Flier)

Medication Administration
Rescue Therapies

Training materials and to request a Seizure First Aid Training

To request an instructional Diastat DVD, please contact Rebekkah

Children+Seizures
Child’s Guide (Brochure)
Raising A Child (Booklet)

Resources for Schools

Employment 

The Employment Development Department (EDD) is one of the largest state departments with employees at hundreds of service locations throughout the state. For more than 70 years, we have connected millions of job seekers and employers in an effort to build the economy of CA.
To learn more about Employee Development Services visit the EDD website: Employee Development Services Website

ADA Resources Guide
Dept. of Rehabilitation List

Transportation+Mobility
Enter your travel information in the Trip Planner below and you’ll get a customized itinerary in seconds, telling you what line to take, where to catch it, where to exit and what it costs.

Metro Trip Planner
Detailed route and schedule information on each line
For a more geographic look at the system

Go Metro Destinations Guide: From theme parks to concert halls, from arenas to museums, you can reach LA’s best attractions on Metro. The Metro Destinations Guide highlights points of interest near Metro stations.

Have Metro Questions? Have questions or need more help? Speak to one of the Metro’s Customer Information Agents by calling 323.GO.METRO (323.466.3876) are available 6:30am – 7pm (Monday-Friday) and 8:00am – 4:30pm (Saturday/Sunday). Please note that you may have to wait for the next available agent.

Access
Access is the service name of the ADA Complementary Paratransit service for functionally disabled individuals in Los Angeles County. Access transportation service is available for any ADA paratransit eligible individual to any location within ¾ of a mile of any fixed bus operated by the Los Angeles County public fixed route bus operators and within ¾ of a mile around METRO Rail stations during the hours that the systems are operational. Complementary paratransit service is not required to complement commuter rail and commuter bus services, since the ADA does not require that these services provide complementary paratransit service. The service area is divided into service areas and extends into portions of the surrounding counties of San Bernardino, Orange and Ventura that are served by Los Angeles County Fixed-route bus lines.

For more information about Access, visit their website: AccessLA.org

Sleep
Sleep+Epilepsy-Lack of, Disruption, Sleepiness
Sleep+Stages of Sleep
Sleep Hygiene
Sleep + AEDs

Life + Lifestyle
Driving+Epilepsy
Driving+Epilepsy+Physician Issues
Seizure Dogs

ADA-Service Animals
Tips+Tools

An Advocate’s Manual: Legal Rights of Children with Epilepsy in School & Child Care

Chapter 4 – IDEA, IEP and Epilepsy

Diastat Advisory

Stop Bullying

Community Resources: Parent Training Information Centers in California

Click here for a Glossary of our Terms

In loving memory of
Brian Alan Sitomer
An excellent young man
January 1970 – June 1977

LETTER FROM STEVE SITOMER

In memory of my son, Brian Alan, this Resource Center is dedicated to all who are touched by epilepsy on a daily basis. Please use this Resource Center with its information, referrals and links to other available sources to educate yourselves about epilepsy. You must become knowledgeable in order to improve the quality of life for yourself and those around you affected by epilepsy. Don’t learn the hard way like I did!

Thank you to all the family members and friends who have supported the Brian Alan Sitomer Fund so faithfully over the years. Thank you to the staff and volunteers of the Epilepsy Foundation of Greater Los Angeles who helped launch and will help maintain and update the Brian Alan Sitomer Memorial Resource Center – both virtual online and at the Epilepsy Foundation Los Angeles.

Sincerely,
Steven M. Sitomer
Father of Brian Alan