When people hear of epilepsy or seizures, the most common thing people think about are the seizures where the person’s body jerks, they may fall to the floor and lose consciousness. Other types of seizures may include the body stiffening, or simply staring for a few seconds. In older adults, absence seizures are often mistaken for “senior moments.” These are only a few types of seizures. There are many different types of epilepsy and seizures, various epilepsy syndromes, and other conditions that can cause seizures. We’re continuing to learn about epilepsy and seizures. But, before we go any further, let’s talk about what epilepsy and seizures are.

It’s easier to start with the question, “What is a seizure?” A seizure is a sudden surge of electrical activity in the brain, affecting how a person appears or acts for short periods of time. A seizure happens when a person’s brain is overloaded by abnormal bursts of electrical activity. This is often described as an electrical “storm in the brain.” Sometimes seizures are caused by a medical problem – like an infection, illness, or low blood sugar. When the problem is corrected, the seizures don’t come back.

Epilepsy is a spectrum condition which means there are many different types of epilepsy that includes different seizure types that are unpredictable. A diagnosis of epilepsy is made if a person has 2 or more seizures that are not provoked or caused by another medical problem. Epilepsy can also be diagnosed after one seizure if there is a high risk the person will have more. In short: a seizure is an event and epilepsy is the disease involving recurrent unprovoked seizures. What causes epilepsy? It’s not always possible to tell. In about 5 out of 10 people, a clear cause can’t be found. Some possible causes include head injuries; injuries before birth such as poor oxygen supply, infection in the mother, poor nutrition; stroke; brain tumor; infectious disease such as meningitis, encephalitis; genetics; and developmental disorders such as autism spectrum disorders. 

Another type of seizure is a nonepileptic seizure or event. These events look like epileptic seizures but no change in the brain’s electrical activity is seen during them. They may be caused by other physical factors or by psychological changes. Events thought to be due to psychological factors are often called psychogenic nonepileptic events or seizures. Nonepileptic seizures can mimic seizures and as a result are commonly misdiagnosed and treated as epilepsy. Psychogenic nonepileptic events may be associated with a traumatic event; history of mood disorders; anxiety; dissociative disorders; personality disorders, substance abuse, and other behavioral disturbances. Nonepileptic seizures as best treated by mental health providers who can treat the related cause.

Epilepsy is the fourth most common neurological disorder with around 3.4 million people in the U.S. living with seizures1. It can affect people of all ages and it affects many areas of life such as a person’s education, employment, family relations, recreation, and social activities2. People with epilepsy are also more likely to be economically disadvantaged3,4. 

In 2016, the CDC, using the U.S. National Violent Death Reporting System, confirmed a higher rate of suicide among adults with epilepsy than in the general population. They saw significantly increased rates occurring among women aged 30 – 39, among people of both sexes aged 40-49, and among men aged 50 – 59.5 The risk of death from suicide ranged from 2.6 to 5 times higher than in the general population. 

We also know that mood disorders such as major depression, anxiety disorders, and bipolar disorders occur more frequently in people with epilepsy than in people without epilepsy. Part of the reason for this is that brain areas responsible for some seizure types are also involved in mood and behavior. Those changes in mood can be seen during, after, or between seizures in some people. Other reasons include limitations and challenges that people with epilepsy face in managing their illness that can lead to stress and mood disorders.

Because of the wide range of people epilepsy can affect, the wide variety of causes, and stressors that occur with people with epilepsy, the Epilepsy Foundation works on a wholistic approach when people reach out for help. Some of the more common complex needs include:

• Loss of ability to drive;
• Finding & maintaining employment;
• Medication;
• Memory problems; 
• Independent living; and
• Seizure Dogs.

Driving

Epilepsy is one of the few neurological conditions that when diagnosed, or having incomplete seizure control, results in your driving privileges being suspended in many states. State rules vary with some mandating medical providers to report, while others do not, but in every state, epilepsy is listed as a reason a license can be rejected. Laws are getting more liberal and on average, a person must be seizure free for a period before their driving privileges are reinstated. Some states will allow a person with epilepsy to drive if they have a warning prior to the seizure and can safely pull off the roadway, or if they only have seizures at night when they sleep. Regardless of the circumstances, additional burden is placed on the individual with epilepsy to get medical documentation, and get their treating doctor to complete regular paperwork, recommending that it is safe to drive. If a person with epilepsy does not live in a highly populated area with public transportation, the loss of driving privileges creates additional burdens and stress, not only to work, but attend medical appointments, or do day to day tasks such as shopping. To help people with epilepsy get to medical appointments, the Epilepsy Foundation offers the J. Kiffin Penry Patient Travel Assistance Fund which helps by reimbursing travel expenses for eligible patients who must travel more than 50 miles from home for epilepsy care. You can learn more about the fund by visiting epilepsy.com/penryfund. For other needs, we look for other local transportation programs that can help the person get to their destination.

Employment

Employment is another common area of concern for people with epilepsy. Many people with epilepsy can work and successfully carry out their job duties. Even so, having occasional or frequent seizures can make finding a job even more challenging. It is not always necessary to discuss epilepsy with a potential employer and the important thing is whether the person with epilepsy can do the job as described. However, a lot of work still needs to be done to educate employers that people with epilepsy can be productive workers. Despite advances with the American with Disabilities Act (ADA) and the ADA Amendments Act (ADAAA), people with epilepsy still face challenges in the workplace. Employers were likely to report that there were no suitable jobs for a person with epilepsy; that even when in remission, the person with epilepsy should disclose their condition and believed that hiring a person with epilepsy would be a “major issue.”6 These types of inquiries can be complex, therefore, the Epilepsy Foundation’s Jeanne A. Carpenter Epilepsy Legal Defense Fund can help people facing employment discrimination. Visit epilepsylegal.org for more information.

Medications

Medication expense assistance is a common problem known across many illnesses. Many of the patient assistance programs do not list epilepsy as a covered illness, yet, many of the same medications are listed under psychiatric conditions. Clonazepam (68%), lamotrigine (69%), and divalproex (58%) are used for bipolar disorder and anxiety. Seizure medications used for migraines and pain also include topiramate (73%), gabapentin (77%), and levetiracetam (92%).7 Many of the seizure medications can be expensive and there are few programs to help pay for the medications as they relate to epilepsy. 

Another concern about the medications are the side effects. As with many medications, there are common side effects depending on the medications. Some of the longer-term effects can include bone health and hormone changes for both men and women. 

In each case, the person needs to speak with their health care provider about their medication options that will work with their seizure types. They can also visit epilepsy.com/medications to look up their medication to help them address their concerns.

Memory Problems

Memory is one of the most commonly reported problem areas for people with epilepsy. Memory can be affected in several ways. In each case, the result is that people with epilepsy have difficulty recalling an event or a piece of information when needed. Epilepsy can affect attention and the speed or rate of information processing. It can affect both short-term and long-term memory, remembering names, forgetting appointments, and difficulty reading, just to name a few. This makes it important for the information specialist to follow-up to ensure services were followed through with. Information Specialist also work with the person having memory problems to write down next steps, or in many cases, email what needs to be done along with any referrals immediately following the call. This helps by providing an active record of what needs to be done and serves as a helpful memory aid. 

Independent Living

Being able to live alone is something many adults look forward to in their younger years. Living alone with seizures can be scary, not just for the person with seizures, but also family and friends who are concerned about their loved one. For people with epilepsy, only about 1 in 5 adults live alone.8 Many people with epilepsy seek the assistance of seizure alert animals and devices. While many of these devices may help notify others if a seizure happens, there are a few devices available that can detect repeated shaking movements during a seizure. These may work with tonic-clonic seizures or focal motor seizures with enough movements to trigger the device. Seizures without big movements (such as absence seizures and many types of focal or partial seizures), are not detected by these devices. In fact, most of the devices currently available are not approved by the U.S. Food and Drug Administration (FDA). People who are interested in devices can learn more at epilepsy.com/devices.

The Information Specialist explores several areas as the ability to live alone depends on several factors:

• Seizure type, severity, and frequency of seizures
• After effects or postictal symptoms of a seizure
• Impact of seizure and side effects of treatment on cognition, mood, social abilities, and relationships
• Neurological and development challenges which may be a part of an epilepsy syndrome or associated cause of epilepsy
• Available resources and supports
• Cost of living and financial stability

Our final focus is how they will access to their healthcare team or if they need help getting connected with medical care when they move.

Seizure Dogs

 One of the most common resource referrals for the Epilepsy & Seizures Helpline is a request for seizure dogs. Nearly 95% of the online resource lookups account for seizure dog and training requests. A seizure dog is a service dog that has been trained (or has learned) to respond to a seizure in someone who has epilepsy. Service dogs can be trained to do a variety of tasks, including barking to alert caregivers when a seizure occurs, moving in a way to protect the person having a seizure, or activating an alarm. 

We are also often asked about seizure predicting dogs. There is currently a lack of scientific data that dogs can be trained to predict seizures. Some dogs can cue in on minute behavioral differences but can't be trained to alert that a person’s seizure is about to happen. 

Another major problem is that there is no standard training method for seizure dogs. Training isn’t consistent and there is no governing agency that has defined standards in what training and behavior needs to be met to qualify as a seizure dog. Many people ask if their pet can be trained as a seizure dog. The reality is, most dogs do not have the natural ability or temperament to be a service dog or a seizure dog. There are some anecdotal reports that family pets may learn to respond or alert to seizures before or after they occur, however, there is no strong scientific evidence to support this. 

Other things we consider with the person seeking a seizure dog:

• Cost of the dog and training. Service dogs can cost anywhere between $10,000 - $30,000 with only a few training programs having any type of financial assistance.
• Matching the dog and the person. Most training programs evaluate the connection between the dog and the person to see if they’re a good fit together.
• Training takes time and investment. The person who is wanting the dog must be able to participate in all the training with the dog.
• The dogs housing and health care is considered. Trainings programs will often visit the household of where the dog will be living. Owners may be required to demonstrate that they have enough income and resource for food and the health care of the dog.

People with epilepsy can face a variety of challenges and fears. Because epilepsy is a spectrum condition, there is no simple solution for any situation. For one person, their seizures may be controlled, are employed, and can drive. The next caller may have the same seizure type, unable to get their seizures under control, not be able to find or keep a job, or not be able to get a license. Information Specialists work diligently to help people with epilepsy get connected with epilepsy care and local resources to help them overcome the challenges of living with epilepsy.

Thomas Buckley (on the far left), is the Director of Health & Technology Information Services at Epilepsy Foundation of America, Inc. and the chair of the AIRS Training Committee as well as an AIRS Board Member. 

 

References: 

1. Centers for Disease Control and Prevention. (2017). MMWR, Aug 11;66(31):821-825

2. Gilliam FG. Diagnosis and treatment of mood disorders in persons with epilepsy. Curr Opin Neurol 2005;18:129–33. 

3. Heaney DC, MacDonald BK, Everitt A, Stevenson S, Leonardi GS, Wilkinson P, et al. Socioeconomic variation in incidence of epilepsy: prospective community based study in south east England. BMJ 2002;325:1013–6.

4. Noronha AL, Borges MA, Marques LH, Zanetta DM, Fernandes PT, de Boer H, et al. Prevalence and pattern of epilepsy treatment in different socioeconomic classes in Brazil. Epilepsia 2007;48:880–5.

5. Tian N, Cui W, Zack M, Kobau R, Fowler KA, Hesdorffer DC. Suicide among people with epilepsy: a population-based analysis of data from the US National Violent Death Reporting System, 17 states, 2003–2011. Epilepsy Behav. 2016;61:210–7.

6. Jacoby A, Gorry J, Baker G. Employers’ Attitudes to Employment of People with Epilepsy: Still the Same Old Story? Epilepsia 2005;46(12):1978-87.

7. Cascade E, Kalali, AH. Varying Uses of Anticonvulsant Medications. Psychiatry (Edgmont). 2008 Jun; 5(6):31-33. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2695747/

8. Kobau R. Nearly one in five adults with active epilepsy lives alone based on findings from the 2010 and 2013 US National Health Interview Surveys. US Centers for Disease Control and Prevention, Epilepsy Program. Epilepsy Behav. 2015;51:259-60. https://www.ncbi.nlm.nih.gov/pubmed/26301621