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The Epilepsy Foundation of Colorado is proud to be a reliable source of information about epilepsy. You can find answers to the most common questions below, but please don’t hesitate to contact us if you need anything else.
What is Epilepsy?
Epilepsy is a condition of the brain causing seizures. A seizure is a disruption of the electrical communication between neurons. This can affect a variety of mental and physical functions. Someone is said to have epilepsy if they experience two or more unprovoked seizures separated by at least 24 hours or after one seizure with a high risk for more.
A seizure happens when a brief, strong surge of electrical activity affects part or all of the brain. 1 in 10 people will have a single seizure in their lifetime. 1 in 100 people are currently living with epilepsy. 1 in 26 will be diagnosed with epilepsy during their lifetime.
Seizure First Aid
General First Aid
The first line of response when a person has a seizure is to provide general care and comfort and keep the person safe. The information here relates to all types of seizures. Find specific steps for responding to different seizure types here.
Remember: For most seizures, basic seizure first aid is all that is needed. The steps are simple, and anyone can do them.
Download the Seizure First Aid Poster
STAY with the person and start timing the seizure.
- Remain calm – it will help others stay calm too. Talk calmly and reassuringly to the person during and after the seizure – it will help as they recover from the seizure.
- Check for medical ID.
- Look at your watch and time the seizure from beginning to the end of the active seizure. · Timing the seizure will help you determine if emergency help is needed.
- While most seizures only last a few minutes, seizures can be unpredictable. Some may start with minor symptoms but lead to loss of consciousness or a fall that could cause injury. Other seizures may end in seconds.
Keep the person SAFE.
- Move or guide away from harmful or sharp objects.
- If a person is wandering or confused, help steer them clear of dangerous situations. For example, gently guide them away from traffic, train or subway platforms, heights, or sharp objects.
- Encourage people to step back and give the person some room. Waking up to a crowd can be embarrassing and confusing for a person after a seizure.
- Ask someone to stay nearby in case further help is needed.
Turn the person onto their SIDE if they are not awake and aware.
- Make the person as comfortable as possible.
- Loosen tight clothes around neck.
- If they are aware, help them sit down in a safe place. · If they are at risk of falling or having a convulsive seizure or tonic-clonic seizure:
- Lay them down on the floor.
- Put something small and soft under the head.
- Turn them on their side with their mouth pointing toward the ground. This prevents saliva from blocking their airway and helps the person breathe more easily.
- During a convulsion, it may look like the person has stopped breathing. This happens when the chest muscles tighten during the tonic phase of a seizure. As this part of a seizure ends, the muscles will relax and breathing will resume normally.
- Rescue breathing is generally not needed during these seizure-induced changes in a person’s breathing.
Do NOT put anything in their mouth.
- Jaw and face muscles may tighten during a seizure, causing the person to bite down. If this happens when something is in the mouth, the person may break and swallow the object or break their teeth!
- Don’t worry – a person can’t swallow their tongue during a seizure.
- Don’t give water, pills or food to swallow until the person is awake. Food, liquid or pills could go into the lungs instead of the stomach if they try to drink or eat when not fully aware. · Rescue medicines that are not swallowed can be given if recommended by their health care team.
Do NOT restrain.
- Trying to stop movements or forcibly hold person down doesn’t stop a seizure.
- Restraining a person can lead to injuries and make the person more confused, agitated, or aggressive. People don’t fight on purpose during a seizure. Yet if they are restrained when they are confused, they may respond aggressively.
- If a person tries to walk around, let them walk in a safe, enclosed area if possible.
STAY with them until they are awake and alert after the seizure.
- Most seizures end in a few minutes. · Injury can occur during or after a seizure, requiring help from other people.
- If a person appears to be choking, turn them on their side and call for help. If they are not able to cough and clear their air passages on their own or are having breathing difficulties, call 911 immediately.
- Be sensitive and supportive. Ask others to do the same.
- Seizures can be frightening for the person having one, as well as for others. People may feel embarrassed or confused about what happened. Keep this in mind as the person wakes up.
- Reassure the person that they are safe.
- Once they are alert and able to communicate, tell them what happened in very simple terms.
- Offer to stay with the person until they are ready to go back to normal activity or call someone to stay with them.
When to Call 911
- Seizure lasts longer than 5 minutes
- Repeated seizures
- Difficulty breathing
- Seizure occurs in water
- Person is injured, pregnant, or sick
- Person does not return to their usual state
- First time seizure
- The person asks for medical help
- Causes of epilepsy vary by age of the person. Some people with no clear cause of epilepsy may have a genetic cause. But what’s true for every age is that the cause is unknown for about half of everyone with epilepsy.
- Some people with no known cause of epilepsy may have a genetic form of epilepsy. One or more genes may cause the epilepsy or epilepsy may be caused by the way some genes work in the brain. The relationship between genes and seizures can be very complex and genetic testing is not available yet for many forms of epilepsy.
- About 3 out of 10 people have a change in the structure of their brains that causes the electrical storms of seizures.
- Some young children may be born with a structural change in an area of the brain that gives rise to seizures.
- About 3 out of 10 children with autism spectrum disorder may also have seizures. The exact cause and relationship is still not clear.
- Infections of the brain are also common causes of epilepsy. The initial infections are treated with medication, but the infection can leave scarring on the brain that causes seizures at a later time.
- People of all ages can have head injuries, though severe head injuries happen most often in young adults.
- In middle age, strokes, tumors and injuries are more frequent.
- In people over 65, stroke is the most common cause of new onset seizures. Other conditions such as Alzheimer’s disease or other conditions that affect brain function can also cause seizures.
Common Causes of Seizures by Age
- Brain malformations
- Lack of oxygen during birth
- Low levels of blood sugar, blood calcium, blood magnesium or other eletrolyte problems
- Inborn errors of metabolism
- Intracranial hemorrhage
- Maternal drug use
In Children & Adults
- Congenital conditions (Down’s syndrome; Angelman’s syndrome; tuberous sclerosis and neurofibromatosis)
- Genetic factors
- Progressive brain disease (rare)
- Head trauma
In Infants and Children
- Fever (febrile seizures)
- Brain tumor (rarely)
- Alzheimer’s disease
1. The onset or beginning of a seizure: Where seizures start in the brain tells a lot about what may occur during a seizure, what other conditions or symptoms may be seen, how they may affect someone and, most importantly, what treatment may be best for that seizure type. When we don’t know the onset of a seizure, the wrong treatment may be used. Or a person may not be offered a treatment that has the best chance of helping.
2. A person’s level of awareness during a seizure: Whether a person is aware or not tells a lot about the type of seizure. It’s also very important to know for a person’s safety.
3. Whether movements happen during a seizure: Seizures can also be described by whether motor symptoms occur. When no motor symptoms happen, it can be called a non-motor seizure. This level of description does not need to be used all the time, especially when generally describing or talking about seizures. Yet other times you may find the motor terms helpful.
The term focal is used instead of partial to be more accurate when talking about where seizures begin. Focal seizures can start in one area or group of cells in one side of the brain.
Focal Onset Aware Seizures: When a person is awake and aware during a seizure, it’s called a focal aware seizure. This used to be called a simple partial seizure.
Focal Onset Impaired Awareness: When a person is confused or their awareness is affected in some way during a focal seizure, it’s called a focal impaired awareness seizure. This used to be called a complex partial seizure.
These seizures affect both sides of the brain or groups of cells on both sides of the brain at the same time.
This term was used before and still includes seizures types like tonic-clonic, absence, or atonic to name a few.
When the beginning of a seizure is not known, it’s now called an unknown onset seizure. A seizure could also be called an unknown onset if it’s not witnessed or seen by anyone, for example when seizures happen at night or in a person who lives alone.
As more information is learned, an unknown onset seizure may later be diagnosed as a focal or generalized seizure.
Many different symptoms happen during a seizure. This new classification separates them simply into groups that involve movement.
For generalized onset seizures:
Motor symptoms may include sustained rhythmical jerking movements (clonic), muscles becoming weak or limp (atonic), muscles becoming tense or rigid (tonic), brief muscle twitching (myoclonus), or epileptic spasms (body flexes and extends repeatedly). · Non-motor symptoms are usually called absence seizures. These can be typical or atypical absence seizures (staring spells). Absence seizures can also have brief twitches (myoclonus) that can affect a specific part of the body or just the eyelids.
For focal onset seizures:
Motor symptoms may also include jerking (clonic), muscles becoming limp or weak (atonic), tense or rigid muscles (tonic), brief muscle twitching (myoclonus), or epileptic spasms. There may also be automatisms or repeated automatic movements, like clapping or rubbing of hands, lipsmacking or chewing, or running.
Examples of symptoms that don’t affect movement could be changes in sensation, emotions, thinking or cognition, autonomic functions (such as gastrointestinal sensations, waves of heat or cold, goosebumps, heart racing, etc.), or lack of movement (called behavior arrest).
For unknown onset seizures:
Motor seizures are described as either tonic-clonic or epileptic spasms.
Non-motor seizures usually include a behavior arrest. This means that movement stops – the person may just stare and not make any other movements.
It’s not unusual that a person doesn’t know the type of seizure they have. Often seizures are diagnosed based on descriptions of what an observer has seen. These descriptions may not be fully complete or one can’t tell where a seizure begins from this information.
When seizures are difficult to diagnose or seizure medicines are not working to stop seizures, talk to your doctor or treating health care provider. · Seeing an epilepsy specialist or having an evaluation at an epilepsy center can help you explore other treatment options, such as surgery, devices, dietary therapy, new or add-on seizure medications, or a clinical trial. · Seeing a neurologist or epilepsy specialist may be needed. ·
Having tests like an MRI (magnetic resonance imaging) scan to look at the brain and EEG (electroencephalogram) tests to record the electrical activity of the brain are very helpful to diagnose types of seizures and epilepsy properly. · Keep asking questions so you get the right tests and right treatment for your type of seizures and epilepsy.
Read through the different seizures types listed in this section. · Take information into your doctor or nurse along with a description of your seizures.
Ask family or friends to write down what they see happening or to take a video. Then ask for help understanding your type of seizures.
Diagnosis and Treatment
Diagnosing epilepsy and treating seizures successfully requires a team effort between you, your family and your health care team. It is important to consult with a neurologist who is trained to care for people with neurological disorders if you have epilepsy or seizures.
It may be easy to diagnose and control seizures and epilepsy in some people. For others, diagnosis may be difficult. An epileptologist is key to helping people when seizures and epilepsy are difficult to diagnose, or the person is not responding to standard therapy (medication).
Contact us for help finding a neurologist or epileptologist at 303-377-9774 or firstname.lastname@example.org
Medicine is the most common treatment for controlling seizures and is almost always the first therapy. Medicine controls seizures for about 7 out of 10 people living with epilepsy. There are many different anti-epileptic drugs (AEDs) and different medicines help with different kinds of epilepsy/seizures. It is important to talk with your doctor about the pros and cons of the different AEDs and to never stop or change your medicine without talking to your doctor, as this could cause complications.
Epilepsy surgery has been a treatment used to help control seizures for over 100 years! Improvements in modern methods have made epilepsy surgery safer and more available than ever before. A number of brain surgeries can treat certain kinds of seizures that cannot be controlled with medication or other forms of treatment. Some types of epilepsy surgery may lead to seizure freedom and an improved quality of life in up to 80% of people with drug resistant epilepsy.
Epilepsy surgery can be overwhelming to consider. Many people are unsure if surgery can help them, but surgery needs to be considered as an option for people whose seizures are not controlled with medications, dietary therapy, or implanted devices.
Dietary therapy is an approach to help control seizures, usually in conjunction with seizure medications. · The classic ketogenic diet, a special high-fat, low-carbohydrate diet, is prescribed and monitored by a physician and nutritionist and can help control seizures in some people. It can help both children and adults with refractory seizures. · Additionally, the modified Atkins Diet, which has some similar components to the traditional ketogenic diet, can be effective.
Each diet is personalized for the individual and should be done under medical supervision.
Download this factsheet to learn about the 4 major types of dietary therapy used to treat epilepsy, including the ketogenic diet, Medium-chain triglyceride diet (MCT), Modified Atkins Diet (MAD), and Low Glycemic Index Treatment (LGIT).
Neuromodulation is another option for controlling seizures. This therapy involves using a device to send small electrical currents to the nervous system.
Vagus Nerve Stimulation (VNS)
VNS Therapy® (also called vagus nerve stimulation) has been approved by the U.S. Food and Drug Administration (FDA) as an add-on therapy for adults and children 4 years and older. It is approved to treat focal or partial seizures that do not respond to seizure medications. This is called drug-resistant epilepsy or refractory epilepsy.
Vagus nerve stimulation (VNS) may prevent or lessen seizures by sending regular, mild pulses of electrical energy to the brain via the vagus nerve.
The therapy consists of a device that is implanted under the skin in the left chest area. An electrode or wire is attached to the generator device and placed under the skin. The wire is attached or wound around the vagus nerve in the neck.
The device is programmed in the outpatient clinic to deliver pulses or stimulation at regular intervals. A person does not need to do anything for this device to work.
A person with a VNS device is usually not aware of the stimulation while it is working.
If a person is aware of when a seizure happens, they can swipe a magnet over the generator in the left chest area to send an extra burst of stimulation to the brain. For some people this may help stop seizures.
Responsive Neurostimulation (RNS)
The RNS System has been approved by the FDA as an add-on therapy for adults 18 years and older. It is approved to treat focal or partial seizures that do not respond to seizure medications. The RNS® System is a smart device that is adjustable and reversible. Where it is placed and how it is used is tailored to each person. It learns what is going on in a person’s brain, and settings can be adjusted for each person. Most comprehensive epilepsy centers that provide epilepsy surgery can also offer the RNS® System. Before having the RNS placed, a person must go though detailed testing to see where their seizures arise in the brain.
The RNS® System is similar to a heart pacemaker. It can monitor brain waves, then respond to activity that is different from usual or that looks like a seizure.
A device or stimulator is placed in the bone covering the brain. Tiny wires or leads are placed in one or two places on top of the brain where seizure activity may begin. These wires connect to the stimulator. Once the wires and device are placed, nothing can be seen.
The system can give small pulses or bursts of stimulation to the brain when anything unusual is detected. This can stop seizure activity before the actual seizure begins. Or it could stop seizure activity from spreading from a small focal seizure to a generalized seizure.
People cannot feel the stimulation once it’s programmed. It doesn’t cause pain or any unusual feelings.
It’s not permanent. It can be turned off or removed if it doesn’t work or a person doesn’t wish to use it any longer.
Deep Brain Stimulation (DBS)
The DBS device is placed by a neurosurgeon during an operation. Thin wires (called electrodes) carry electrical impulses from the neurostimulator device directly to the brain to stop brain signals that causes seizures.
The neurostimulator device is battery operated. It can be programmed like a tiny computer (similar to a cardiac pacemaker).
The device is programmed by your doctor or nurse to deliver tiny electrical impulses.
· These electrical impulses help to stop seizures from beginning or spreading to different areas of the brain.
· The DBS® System is manufactured by Medtronic. Additional information for patients and physicians is available on their website.
Colorado is one of many states that allows medical use of cannabis. People living with uncontrolled seizures who have previously attempted other forms of treatment have reported beneficial effects and reduced seizure activity, especially with cannabidiol (CBD) oil. The Epilepsy Foundation of Colorado supports further research on CBD/medical marijuana. Anyone contemplating these options should conduct research to reach an informed treatment decision.
- Medical marijuana (also called medical cannabis) is whole plant marijuana or extracts from the plant used for medical purposes.
- Cannabinoids are substances in cannabis that act on cells in the body, including the brain. The two main cannabinoids used in medicine are tetrahydrocannabinol (THC) and cannabidiol (CBD).
- Evidence from laboratory studies, anecdotal reports, and small clinical studies over a number of years suggest that cannabidiol (CBD) could potentially help control seizures. The FDA recently approved the use of Epidiolex (a plant-based formulation of CBD) to treat seizures for people 2 years of age and older with Dravet syndrome and Lennox-Gastaut syndrome (LGS).
- Medical cannabis, CBD, and THC all have possible side effects. The most common side effects of CBD included sleepiness, diarrhea, fatigue, and decreased appetite.
- CBD also interacts with some other seizure medicines. Careful monitoring of CBD is needed.
- When conventional treatments do not work to control seizures, as is the case for roughly 30% of people with epilepsy, it is not unreasonable to consider CBD oil.
- What is medical cannabis?
- What is CBD?
- What is the Epilepsy Foundation’s position on medical cannabis and CBD?
- What is the legal status of CBD?
- What is the legal status of medical cannabis?
- Are there any side effects or drug interactions associated with medical cannabis or CBD?Will medical cannabis or CBD replace my other medications?
- What do I do if my physician or prescribing provider will not recommend medical cannabis or CBD?
- Is there any difference in the commercial-grade CBD I purchase online or from a health food store and the dispensary-grade CBD sold in medical dispensaries?
- Are there currently any FDA-approved therapies derived from CBD?
- How is Epidiolex® different from commercial grade CBD sold over-the-counter and in dispensaries?
Learn about the Epilepsy Foundation’s state and federal advocacy efforts on removing barriers to cannabis research and supporting access to medical cannabis (marijuana) in consultation with the treating physician.
The National Epilepsy Foundation has comprehensive resources on treatment options if you’d like to explore further:
· Not every person will reach the goal of “No Seizures, No Side Effects” right now, but research and specialty care help more people achieve it each year.
· While seizure medicines are the mainstay of epilepsy treatment, there are other approaches to think about too, including surgery neurostimulation devices, dietary therapy, complementary health approaches and clinical trials.
Learn the basics to get started:
- What’s first?
- What You Need to Do If First Medicine Doesn’t Work
- When Medicines Do Not Work
If your seizures are difficult to control, meaning you continue to have seizures after one year or after two anti-seizure medications have been tried, we recommend seeking more specialized care. · Epilepsy centers provide a team approach to caring for people with seizures and epilepsy. Testing is available to diagnose whether a person has seizures and the type of epilepsy they may have. Epilepsy experts (called epileptologists) can help explore all treatment options.
Nonepileptic Seizures (NES / PNES)
Nonepileptic seizures are events that may look like epileptic seizures but are not caused by abnormal brain electrical discharges. They may be associated with psychological conditions or other physical problems. A physician may suspect NES when the seizures have unusual features such as type of movements, duration, triggers and frequency. Further testing is needed to find the exact cause so they can be treated properly. Psychogenic nonepileptic events are common. About 20% of the people referred to comprehensive epilepsy centers for video EEG (electroencephalogram) monitoring are found to have nonepileptic seizures. About 1 in 6 of these people also has epileptic seizures or has had them in the past.
Nonepileptic events have been more widely recognized during the past several decades. The good news is that these events can respond to treatment. A psychiatric evaluation helps sort out possible psychological problems and the types of treatment that may be needed.
Being diagnosed with psychogenic seizures doesn’t necessarily mean the person has a serious psychiatric disorder. Yet treating the nonepilepsy or psychogenic seizures will involve treating whatever psychological problems may be present.
Sometimes the episodes stop when the person learns that they are psychological. Learning what the diagnosis means and what it doesn’t mean is very important.
Some people can learn how to control the events with behavioral techniques, such as relaxation therapy or other forms of cognitive behavioral therapy. · Some people have depression or anxiety disorders that can be helped by medication.
Counseling for a limited time is often helpful. Both individual and family therapy may be recommended.
People who have both epilepsy and psychogenic nonepilepsy seizures or events will require seizure medication as well as treatments for the psychogenic events.
Early Death and SUDEP
Most people with epilepsy live a full and healthy life. However, you should be aware that people can die from epilepsy.
Some people with epilepsy may lose their lives from accidents, suicide, or the underlying cause of their condition, such as brain tumors or infections.
Another rare cause of epilepsy related death is New-onset refractory status epilepticus (NORSE), which is defined as refractory status epilepticus without an obvious cause after initial investigations. · Yet, the leading cause of epilepsy-related death is believed to be sudden unexpected death in epilepsy, also known as SUDEP.
Sudden Unexpected Death in Epilepsy refers to the death of a person with epilepsy without warning and where no cause of death can be found. Recent studies estimate the rate of SUDEP is about 1 per 1,000 people living with epilepsy each year. In people with frequent tonic clonic seizures (convulsions) who are poorly controlled with medications, the rate may be 1 in 100 per year.
While this information may be scary to read, it’s not meant to be. We are committed to helping people be aware of the seriousness of epilepsy and what they can do to prevent complications and death. Sometimes death from epilepsy occurs suddenly and can’t be prevented. In other situations, there may be some things people can do to avoid or modify situations and risks.
People who continue to have seizures are at greater risk of a number of complications, which is why preventing seizures and other problems is so important. The most serious complications are injuries and dying from seizures. This site gives frank information about SUDEP.
Managing Your Epilepsy
Participating in your treatment and being an advocate for yourself can impact your results. We encourage you to do a few simple things to effectively participate and advocate for yourself:
- Take your medicine on time, every day, exactly as prescribed by your doctor.
- See a specialist if your seizures are not controlled.
- Keep a health diary of seizures, test results, medications and questions for your doctor. Track your seizures at SeizureTracker.com.
- Know your seizure triggers – for many people, sleep deprivation or stress can trigger seizure activity.
- Create and share your own seizure action plan – get your doctor’s input and share this with your employer, school, family and friends.
- Ensure you’re taking care of your overall health and wellness. Epilepsy.com offers ways to learn critical information, skills and resources that will help you manage seizures and epilepsy more easily.
We know that living with epilepsy is more than just knowing your type of seizures or what medicine to take. People must learn how to respond to seizures in a variety of situations — and be prepared to handle whatever comes your way. Living with seizures also means learning how to handle the way epilepsy affects your life including your social, emotional and physical well-being.
The best way to manage your seizures is to take a practical approach emphasizing preparation, prevention, and teamwork.
Want to learn more? The Epilepsy Foundation of Colorado provides a variety of free trainings and education to the community.
We can provide education about seizures and seizure first aid in any setting. If you find that you need help explaining your seizures or want support when talking about epilepsy, we are here to help.
Seizure Safe Schools These trainings cover seizure recognition, first aid, and treatment options. Also included is a discussion on the impact seizures and epilepsy can have on students academically, and the importance of implementing a seizure action plan in the school setting.
First Responder Trainings
This updated training, Emergency Medical Responders: From Seizure First Aid to Seizure Emergencies, aims to increase EMS ability to recognize and respond to people during different types of seizures and during status epilepticus, a seizure emergency.
Law Enforcement & Corrections Trainings
Law enforcement and correctional officers may encounter people acting confused, having difficulty talking or understanding, or behaving inappropriately. There may be many causes of these symptoms, including seizures and epilepsy. Knowing how to recognize and respond to a person during a seizure is critical for all law enforcement officers. They also need to protect the rights of an individual having a seizure and understand the importance of consistent access to seizure medicines for persons with epilepsy.
Seizure Safety School
We partner with the Children’s Hospital Colorado neurology department to offer this class about epilepsy, seizure first aid and safety practices. Adults, children and families may attend at no cost. Check our calendar for upcoming dates.
Our free Beyond Medication forums bring the epilepsy community together in various locations across Colorado on a quarterly basis. This is an opportunity to learn more about epilepsy treatments, and connect with others in the community who are diagnosed with epilepsy. Check our calendar for upcoming dates.
Seniors & Seizures Training is a program designed to provide caregivers and staff of adult day care centers, senior centers, long-term facilities, nursing homes, and other senior-serving organizations with strategies to better recognize and respond to seizures among older adults.
Find more resources and information in the materials below.
First Aid and Seizure Response
Adults & Seizures
Children & Seizures