Epilepsy is common, but often not well understood by people. This can cause many people who have seizures to feel self-conscious, embarrassed, or ashamed of this condition. It can also lead to a lack of understanding about what to do in the event of a seizure. Purple Day, celebrated March 26th, is designed to increase awareness of epilepsy, in order that the people who live with it can get the support and understanding they need.
The Facts About Epilepsy
Seizure disorders affect many people, however:
65 million people worldwide have epilepsy, including 3.4 million Americans.
1 in 26 Americans will develop epilepsy at some point in their lives.
150,000 new cases of epilepsy are diagnosed in the United States yearly.
6 out of 10 people have a form of epilepsy with an unknown cause.
One-third of people with epilepsy live with uncontrollable seizures because they have found no effective treatments.
Adults with active epilepsy are more likely to have other chronic health problems or problems affecting emotional health.
Many people associate epilepsy specifically with seizures that are triggered by flashing lights, but the term includes a number of different seizure disorders that have a variety of symptoms and causes.
Epilepsy is a chronic disorder involving recurrent and unprovoked seizures. Although people with epilepsy may have certain triggers that make a seizure more likely, "unprovoked" means that the seizures are not caused by a specific, reversible medical condition like low blood sugar. A diagnosis of epilepsy occurs after two of these seizures, or one if it's determined more are likely.
Types of Seizures: Different types of seizures are classified according to three major factors, and recognizing these can be helpful in keeping someone safe during one. These factors are:
Onset: where a seizure starts in the brain.
Level of awareness: seizures may or may not allow for consciousness and awareness.
Level of motion: motor symptoms may or may not occur during a seizure.
Types of seizures include Motor and Non-Motor subtypes according to whether or not they have physical symptoms, and include:
Generalized Onset Seizures: Seizures that begin in both sides of the brain.
Focal Onset Aware Seizures: The seizure begins in a specific location in one side of the brain; the person is aware and awake.
Focal Onset Impaired Awareness: Similar to the above, but the person is confused, made unconscious, or their awareness is otherwise affected.
Unknown Onset Seizures: Used when a seizure's beginning isn't known, which typically happens when a seizure isn't witnessed. More information may be learned.
What Causes Epilepsy?
About 50% of people diagnosed with epilepsy have no known cause. Clear causes for seizure disorders are varied, and may include:
- Genetic causes.
- Structural changes in the brain, both inborn and acquired by injury or other factor.
- Scarring resulting from infections in the brain.
- Head trauma.
- Congenital conditions.
- In middle-aged and older people: strokes, trauma, and Alzheimer's disease.
In addition to more direct causes, some conditions may increase the risk factor of developing epilepsy. These include:
- Premature birth.
- Inborn structural abnormalities in the brain.
- Seizures during the first month of life.
- Abnormal blood vessels in the brain.
- Infections of the brain: abscess, meningitis, or encephalitis.
- Intellectual and developmental disabilities.
- Autism spectrum disorder.
- Cerebral palsy.
- Stroke or lack of oxygen to the brain.
- Seizures soon after traumatic head injuries.
- Family history of epilepsy or fever-related (febrile) seizures.
- Unusually long febrile seizures.
- Abuse of illegal drugs.
People with epilepsy may have a number of triggers, factors that provoke seizures or make them more likely. These may include:
- Flashing lights or patterns.
- Lack of sleep or disrupted sleep.
- Dehydration and lack of fluids.
- Nutritional deficiencies and excessive gaps between eating.
- Illness, both with and without fever.
- Psychological stress.
- Hormonal changes and menstrual cycles.
- Medicines that reduce the effectiveness of seizure medications.
- Missing medication doses.
- Illegal/recreational drug use.
Recognizing a Seizure
Whether you suffer from epilepsy or you're close to someone afflicted with it, learning to recognize symptoms that occur before and during a seizure can be an invaluable way to provide assistance or protect yourself from seizure-related injury.
Seizures, however, affect different people in different ways, and take on many different forms. They have a common structure with a beginning, middle, and end, and understanding these stages can help you identify a seizure.
Prodrome: This is an early onset period that can occur hours or days before a seizure, in which some people may experience feelings, sensations, or changes in behavior that warn that a seizure may occur.
Aura: The first symptom of a seizure and, unlike the prodrome, considered part of it. Not all people experience auras, and sometimes auras occur alone, without other stages. An aura is characterized by a change or changes in feeling, sensation, thought, or awareness. Sometimes these occur stereotypically, as a repeated pattern preceding a seizure, and sometimes they're indescribable feelings that aren't as easily recognized.
The symptoms that may occur during these two stages are various, and are often marked by not having obvious causes or antecedents. They may include:
- Smells, sounds, and tastes that aren't physically present.
- Visual loss or blurriness.
- Feelings of strangeness.
- Déjà vu: unexplained feelings of familiarity with new places or situations.
- Jamais vu: unexplained feelings of unfamiliarity with familiar places or situations.
- Fear or panic.
- Pleasant feelings.
- Racing thoughts or anxiety.
- Dizziness or lightheadedness.
- Nausea or other stomach irritations, such as a rising, bilious feeling in the throat.
- Bodily numbness or tingling.
The middle stage, or ictal phase of a seizure is the period from the aura symptoms to the end of the seizure. This is the time when the electrical seizure activity occurs in the brain. This may include many common symptoms, both mental and physical.
Mental symptoms encompass thoughts, emotions, sensations, and awareness, and may include:
- Loss of awareness, blacking out.
- Loss of consciousness, passing out.
- Feelings of detachment or bodily strangeness.
- Memory lapses or forgetfulness.
- Distractedness or daydreaming.
- Unusual sounds, smells, or tastes.
- Inability to hear.
- Loss of vision or blurriness.
- Flashing lights.
- Formed visual hallucinations: seeing objects that aren't present.
- Déjà vu.
- Jamais vu.
- Panic, fear, or intense anxiety or impending doom.
- Pleasant feelings.
Physical symptoms include:
- Difficulty speaking: inability to talk, incoherent speech.
- Drooling, difficulty swallowing.
- Difficulty breathing.
- Dilated pupils, repeated blinking, staring, or eyes looking upward or to one side.
- Inability to move or loss of muscle tone: may cause slumping or falling.
- Muscle rigidity or tenseness: may cause them to bite tongue.
- Tremors: twitching or jerking, whether localized, traveling, or across body.
- Convulsion: loss of consciousness followed by rigidity and then fast, jerking motions.
- Automatisms: repeated non-purposeful movements involving the face, arms, or legs.
- Repeated purposeful movements: may continue what they were doing before the seizure.
- Loss of bowel or bladder control.
- Sweating, pale or flushed skin.
- Heart racing.
The ictal phase of a seizure is characterized by many symptoms, but common among all of these is a loss of control over one's own body. This can lead to injuries from external sources; later in this post, we'll discuss how to prevent them.
The ending of a series, or postictal phase, consists of the recovery period following a seizure, which may be immediate or may last minutes to hours. Returning to normal after a seizure is heavily affected by the type of seizure and what part of the brain is impacted by it.
Common symptoms following a seizure include:
- Slow responses or unresponsiveness.
- Difficulty in talking, writing, or other communication.
- Fatigue or exhaustion, possibly leading to sleeping for hours afterward.
- Weakness, either general or located.
- Nausea or stomach irritation.
- Bathroom urgency or loss of control.
- Memory lapses or loss.
- Dizziness, fuzziness, or lightheadedness.
- Headaches or other pains.
- Feelings of depression or sadness.
- Feelings of anxiety or fear.
- Feelings of frustration, embarrassment, or shame.
Responding to a Seizure
Seizures are frightening events, even when you're only witnessing one. But preparing for the possibility of a seizure will help you keep calm and provide the help that the person needs. Not only is the seizure dangerous, but it can also cause other dangers like falling. Here are some steps to take when someone has a seizure:
- Most seizures only last a few minutes.
- Many seizures don't require you to physically step in, especially if there's no change in awareness. But be alert, as they can be unpredictable.
- The person's chest muscles may become rigid; it may look like they're not breathing, but when the seizure begins to end their muscles will relax and normal breathing will resume. Rescue breathing or CPR will usually not be necessary.
- Your calmness will help less experienced onlookers remain calm.
- Take charge of any onlookers. Prevent them from crowding, which may confuse or embarrass the person as they come out of their seizure.
- Do not leave the person having a seizure.
- Watch the person's behavior and symptoms for signs of further danger.
- Time the seizure; if it lasts longer than the person's usual seizure, you may need to call emergency services.
Prevent Injury and Create Comfort:
- Help the person sit down or move to a clear, safe space.
- Move any hazardous objects out of the space, including sharp objects or tripping hazards.
- If the person loses consciousness, help lay them down on the floor. Turn them onto their side to prevent saliva from blocking their airway.
- Speak calmly and reassuringly to the person before, during, and after the seizure. This will help them stay calm as they recover.
Steps to Avoid:
- Do not hold the person down or restrain them. If the person tries to walk, help them walk around a safe, enclosed area.
- Do not place anything in the person's mouth to bite down on unless you're a trained rescuer. They may break their teeth or swallow part of the object.
- Do not provide water, food, or pills until the person is fully alert again.
When to Call for Help:
- If a seizure has lasted 5 minutes or more.
- If a seizure has lasted longer than the person's normal seizures.
- If another seizure happens without consciousness regained between seizures.
- If an injury has occurred.
- If the person's breathing has stopped or they appear to be choking.
- If the seizure occurs in a dangerous place, like in the water or an area with heavy traffic or other hazards (such as a train or subway station).
Preparing for Seizures
Whether you or a loved one suffers from epilepsy, preparing for seizures is a valuable way to ensure that the afflicted person will be safe and taken care of in the event of one. Some methods:
Get Diagnosed: Knowing what kind of seizures you have and their symptoms, as well as any symptoms recurrent in your seizures, will help you make a plan for future events. Speak with your doctor and any relevant specialists, and have examinations done to help better determine your condition.
Use a Buddy System: When doing anything that might pose a danger in the event of a seizure, have a partner nearby. This is valuable when swimming, driving, cooking, working around the house (especially with tools or heights), or doing other recreational activities.
Create a Seizure Response Plan: Create an action plan detailing your specific type of epilepsy, your medicines and dosages, and what steps to take during a seizure. Have a doctor review it and give copies to loved ones, classmates, coworkers, and other people you're around regularly.
Perform Seizure Drills: Practice the steps on your seizure response plan. Set aside time on a regular basis to go through these steps with your loved ones.
Safeguarding Your Environment: Your home may contain a number of dangers if you have epilepsy. Here are some situations and places to keep in mind:
Fall-Proofing: Any room you use regularly can be fall-proofed. Non-slip carpets, padded corners, and supportive devices can help make your living and work spaces safer.
Bone Health: Some seizure medications can cause bone thinning, and fall injuries can break bones. Calcium supplements as well as regular exercise can help counteract this.
Bathroom Safety: The bathroom is a common injury site. Showers are safer than baths, which have drowning risks, but you may want to install a shower chair and support bars for additional safety.
Fire Safety: Choose an electric stove, avoid smoking, and put barriers in front of sources of open flame like fireplaces.
Epilepsy can seem overwhelming; it requires many safeguards and life changes to implement, as well as the social stress of explaining your condition to loved ones, coworkers, and anyone else who you may be around regularly. But even if you haven't found a medication to control your seizures, each of these steps is manageable with an eye to your environment and awareness of the patterns of your disorder. Although it may be difficult and even emotionally taxing to ask for the involvement and awareness of the people around you, the support and understanding you may receive can be invaluable in reducing the emotional burden of epilepsy.