Module 3

Chapter
1

Epilepsy Management Includes More Than Medication

Taking your antiepileptic drugs (AEDs) is an important part of epilepsy management.1 Living well with epilepsy means that you will need to do more than take your medications regularly.2

Self-management of epilepsy is an important part of your care.6,7 Self-management means taking responsibility for your own behavior and well-being. It also means managing your own day-to-day health.8

Chapter
2

Build Your Epilepsy IQ: Common Epilepsy Terms

Building your epilepsy IQ means learning about all the ways that epilepsy affects your life. Epilepsy affects each person differently.3 What is most important about how epilepsy affects your life? Think about what is most important to you as you develop self-management tools to help manage your seizures.6,9 The goal of epilepsy self-management is to live the best life possible while managing the disease.6,9

Learning more about common epilepsy terms can help you build your epilepsy IQ and self-management skills.


Seizure Triggers

Seizure triggers are specific things that may cause your seizures. Triggers are different for each person with epilepsy.10 If you know what your seizure triggers are, then you can try to avoid them.11

A seizure trigger is something that happens regularly before seizures. Here are some common seizure triggers10,11:

You may already know what your seizure triggers are. If so, you might want to share this information with your family, friends, coworkers, and healthcare professionals so they can help you avoid your triggers.

If you don't know what your seizure triggers are, try to remember what you were doing before you had a seizure.6 Here are some ideas to think about:

  • Where were you?
  • Were there flashing lights or anything else going on around you that may have triggered the seizure?
  • How did you sleep the night before?
  • Were you feeling extra stress around the time of the seizure?
  • What did you eat or drink that day?

If you can remember what was happening right before you have a seizure, you can write this down on your seizure diary each time you have a seizure. If someone was with you when you had a seizure, ask if the person remembers anything that might have triggered the seizure. You and your healthcare professional might be able to figure out what your seizure triggers are by looking at your notes.6,10

seizure dairy

Aura

An aura is a warning that some people may have before a seizure. Not everyone with epilepsy has an aura. For people who do have an aura, it may be hard to describe. An aura can be a change in feeling, sensation, thought, or behavior. If you have an aura, it could be the same each time you have a seizure, or it could be one of the warning signs mentioned.12 An aura may actually be a seizure for some people with epilepsy.13,14


Risk Factors

Risk factors are something that can make a person more likely to have epilepsy. Not everyone who has epilepsy has risk factors. Here are some risk factors for adults with epilepsy11:

  • Alzheimer's disease
  • Autism
  • Brain injuries, tumors, infections, or bleeding
  • Stroke (blocked blood vessel in the brain)
  • Family history of epilepsy
  • Family history of seizures that happen during a fever
  • Use of illegal drugs such as cocaine

Drug-resistant Epilepsy

Drug-resistant epilepsy means that after trying either 2 different types of AED medications alone or after trying 2 different combinations of AED medications, you continue to have seizures.15


Status Epilepticus

Status epilepticus is a series of continuous seizures that last over a period of time and may cause brain injury.17

In some people, status epilepticus is caused by something happening in the brain, such as a brain tumor or a brain infection. In other people, there is no known cause.17


Sudden Unexpected Death in Epilepsy (SUDEP)

SUDEP is a sudden unexpected death related to epilepsy. It is not caused by drowning or another type of accident that could lead to death while having a seizure. SUDEP can happen with or without a seizure.18

SUDEP might be hard to talk about, but knowing that it could happen is an important part of prevention.18


Facts About SUDEP

Here are some facts about SUDEP:

  • About 1 in 1000 adults with epilepsy die of SUDEP each year19
  • Frequent seizures, especially generalized tonic-clonic seizures, are the greatest risk factor for SUDEP19
  • Most common epilepsy-related cause of death that is not due to physical injury18
  • Happens more often in people with epilepsy who could be treated with surgery18
  • Among neurologic conditions, SUDEP ranks second, after stroke, in years of potential life lost18

Risk Factors for SUDEP

Preventing SUDEP

Doctors and researchers are studying SUDEP to learn more about it. It is not known yet if SUDEP can be prevented.18

These SUDEP prevention tips are especially important if you have generalized tonic-clonic seizures. Some people at high risk of SUDEP might wear a seizure monitoring device while sleeping.18

Chapter
3

Epilepsy Safety


Planning for Safety

You need to plan for your own safety in case a seizure happens. Think about safety at home, safety in the workplace, and how people around you can help you stay safe.4 Here are some things you can do no matter where you are4:

  • Wear a medical ID bracelet that says you have epilepsy
  • If you have an aura or any kind of warning before you have a seizure, let someone near you know and move to a safe place
  • Carry a cell phone so you can contact family or friends

Safety at Home

What other things can you do to make your home more safe?


Safety in the Workplace

How have you prepared for a seizure emergency in your workplace? Here are some ideas about safety in the workplace4:

  • Make sure that coworkers know what to do if you have a seizure
  • Avoid work that involves heights, being over water, using heavy machinery, or being exposed to extreme heat or fire
  • Try to keep regular work hours and a regular sleep schedule to maintain a healthy lifestyle
  • Use safety guards and other automatic shutoffs if working with machinery or power tools

Educating Others About Epilepsy Safety

Create a seizure action plan in case any of these people need to help you when you have a seizure. This plan will tell people what to do when you have a seizure and includes how to help you after the seizure, who to call, your doctor's name, your medications, and lots of other information.20

Seizure action plans for adults and older teenagers are available at the end of this module, after the handouts. Both seizure action plans can also be downloaded from the Exploring Epilepsy website.

Seizure first aid classes are complimentary through the Epilepsy Foundation. Contact your local chapter.21

Chapter
4

Living With Epilepsy – Quality of Life

Impact of Epilepsy on Quality of Life

Epilepsy is about more than having seizures. Living with epilepsy can affect your quality of life. Quality of life is your sense of well-being that comes from how satisfied you are with your roles, activities, goals, and opportunities in life.6

Here are some specific ways that your quality of life may be affected if your seizures are not controlled:

  • Your ability to work3
  • Your ability to drive3
  • How productive you are at work, home, or school6
  • Your ability to live independently3
  • How you function in family, social, and romantic relationships6
  • Feeling embarrassed about having a seizure in public3
  • Feeling depressed or anxious3

People with epilepsy who are seizure free have about the same quality of life as people without epilepsy.3


Who to Contact for Help With Quality-of-Life Issues

Part of epilepsy self-management is learning how to improve your quality of life. In addition to your healthcare team, there are other people in your community who can help you navigate this journey.6

Click the text below for more detail.

Chapter
5

Epilepsy Self-Management: Managing Lifestyle and Wellness


Who to Contact for Help With Quality-of-Life Issues

Let's review some lifestyle changes that may help control your seizures and improve your quality of life:

  • Try to reduce stress; you may want to try yoga, meditation, or other methods of stress relief4,6,23
  • Get enough sleep and follow a regular sleep schedule24
  • Eat healthy foods4
  • Exercise regularly6
  • Talk to a therapist about how to include lifestyle changes in your daily routine6
Chapter
6

Building Your Epilepsy Community of Support

Members of Your Community of Support

Click the images below for more detail.

Support groups can help you in a lot of ways:

  • Feeling more comfortable with your epilepsy diagnosis25
  • Taking your AEDs regularly25
  • Keeping track of your seizures25
  • Finding ways to talk to your healthcare team about your seizures, medications, or other issues25
  • Helping you feel like you have more control over epilepsy9
  • Helping you live well with epilepsy25

Online Support Groups

Online support groups might also be called online communities. Here are some recommended, well-known, education-based online communities for people with epilepsy:

Click the images below for more detail.


Social Media Platforms

Some people with epilepsy might enjoy being part of a social network. My Epilepsy Team is a social network and online support group for people living with epilepsy. It's like Facebook for people with epilepsy.34

In-person Support Groups

Some people with epilepsy might like being part of online communities.9 For other people, it might feel good to have an in-person local support group. The Epilepsy Foundation is a good way to find support groups that give you a chance to meet other people with epilepsy. There might be different types of groups you can join in your local community35:

  • Support groups for families
  • Support groups for older teenagers
  • Support groups for families

You might want to join both online and local support groups. It may take some time to try different support groups to see which type works best for you.

Chapter
7

References

  1. Perucca E, Tomson T. The pharmacological treatment of epilepsy in adults. Lancet Neurol. 2011;10(5):446-456.
  2. Lu B, Elliott JO. Beyond seizures and medications: normal activity limitations, social support, and mental health in epilepsy. Epilepsia. 2012;53(2):e25-e28.
  3. Sander JW. Ultimate success in epilepsy - the patient's perspective. Eur J Neurol. 2005;12(Suppl 4):3-11.
  4. Caraveo N, Chen S, Evrard C, Ozuna J; Epilepsy Centers of Excellence Nursing Workgroup. Self-management in Epilepsy. A Guide for Healthcare Professionals. Washington DC: US Department of Veterans Affairs; 2015. Available at http://www.epilepsy.va.gov/Library/Self-Management%20In%20Epilepsy.pdf.
  5. Epilepsy Action. Safety Advice for People With Epilepsy. https://www.epilepsy.org.uk/info/safety. Published 2016.
  6. England MJ, Liverman CT, Schultz AM, Strawbridge LM, eds. Epilepsy Across the Spectrum. Promoting Health and Understanding. Washington, DC: Institute of Medicine of the National Academies. The National Academies Press; 2012.
  7. Centers for Disease Control and Prevention. Living Well With Epilepsy. https://www.cdc.gov/epilepsy/pdfs/living_well_2003.pdf.
  8. Agency for Healthcare Research and Quality. Self-management support. http://www.ahrq.gov/professionals/prevention-chronic-care/improve/self-mgmt/index.html. Published 2015.
  9. Hixson JD, Barnes D, Parko K, et al. Patients optimizing epilepsy management via an online community: the POEM Study. Neurology. 2015;85(2):129-136.
  10. Epilepsy Foundation. Triggers of Seizures. http://www.epilepsy.com/learn/triggers-seizures. March 2014.
  11. Epilepsy Foundation. What Are the Risk Factors? http://www.epilepsy.com/learn/epilepsy-101/what-are-risk-factors. March 2014.
  12. Epilepsy Foundation. What Happens During a Seizure. http://www.epilepsy.com/learn/epilepsy-101/what-happens-during-seizure. March 2014.
  13. Boggs JG. Simple Partial Seizures. Medscape. http://emedicine.medscape.com/article/1184384-overview?pa=2LkI43pUJ9qhbNCmbvH6dC9VbFUt%2Bfsgd6maGfrtZu4STfKIW7jYutR7VSeJY4n28SIvl8zjYv73GUyW5rsbWA%3D%3D. Published February 22, 2016.
  14. Fisher RS, Cross JH, French JA, et al. Operational classification of seizure types by the International League Against Epilepsy. International League Against Epilepsy: 2017. https://www.ilae.org/files/dmfile/Operational-Classification--Fisher_et_al-2017-Epilepsia.pdf.
  15. Kwan P, Arzimanoglou A, Berg AT, et al. Definition of drug resistant epilepsy: consensus proposal by the ad hoc Task Force of the ILAE Commission on Therapeutic Strategies. Epilepsia. 2010;51(6):1069-1077.
  16. Brown C. Pharmacological management of epilepsy. Prog Neurol Psychiatry. 2016;March/April:27-34c.
  17. Trinka E, Cock H, Hesdorffer D, et al. A definition and classification of status epilepticus - Report of the ILAE Task on Classification of Status Epilepticus. Epilepsia. 2015;56(10):1515-1523.
  18. Collazo IVM, Tatum WO. Sudden unexpected death in epilepsy (SUDEP). Are all your patients informed? Neurologist. 2016;21(4):66-71.
  19. Epilepsy Foundation SUDEP FAQ. Epilepsy Foundation. http://www.epilepsy.com/learn/impact/mortality/sudep/sudep-faq. August 2013.
  20. Epilepsy Foundation. Seizure Response Plans 101. http://www.epilepsy.com/get-help/managing-your-epilepsy/seizure-response-plans-101. August 2013.
  21. Epilepsy Foundation of Michigan. Community Education. http://www.epilepsymichigan.org/page.php?id=334.
  22. Kerr MP. The impact of epilepsy on patient's lives. Acta Neurol Scand. 2012;126(Suppl 194):1-9.
  23. Tang V, Poon WS, Kwan P. Mindfulness-based therapy for drug-resistant epilepsy: an assessor-blinded randomized trial. Neurology. 2015;85(13):1100-1107.
  24. Kataria L, Vaughn BV. Sleep and epilepsy. Sleep Med Clin. 2016;11(1):25-38.
  25. Wicks P, Keininger DL, Massagli MP, et al. Perceived benefits of sharing health data between people with epilepsy on an online platform. Epilepsy Behav. 2012;23(1):16-23.
  26. Epilepsy Foundation. Epilepsy Foundation Individual & Family Services. http://www.epilepsy.com/get-help/services-and-support/epilepsy-foundation-individual-family-services. Published 2016.
  27. Epilepsy Foundation. Community Forum. http://www.epilepsy.com/forum-topics.
  28. Epilepsy Foundation. Chat Room. http://www.epilepsy.com/connect/chat.
  29. Patients Like Me. Epilepsy. https://www.patientslikeme.com/conditions/3.
  30. WebEase. Epilepsy Awareness, Support and Education. https://www.webease.org/. Published 2016.
  31. Living Well With Epilepsy. http://livingwellwithepilepsy.com/. Published 2016.
  32. Living Well With Epilepsy. Founder: Jessica Keenan Smith. http://livingwellwithepilepsy.com/about-us/founder-jessica-keenan-smith.
  33. Living Well With Epilepsy. Epilepsy 101. http://livingwellwithepilepsy.com/epilepsy-101.
  34. My Epilepsy Team. https://www.myepilepsyteam.com/. 2016.
  35. Epilepsy Foundation. Epilepsy Foundation Individual & Family Services. http://www.epilepsy.com/get-help/services-and-support/epilepsy-foundation-individual-family-services.
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  37. Epilepsy Foundation. Dietary Therapies. https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/dietarytherapies. Published October 2013.

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