The Epilepsy Support Center

Every person is unique, but when you face a challenge like epilepsy, you are never alone.  Countless men, women, and children have faced exactly the same diagnosis and have survived and thrived. The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Web to gather together links to the very best epilepsy resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this epilepsy guide even more helpful to survivors like you.    

 

JUST FOUND OUT 

Survivors Say: Best Resources for Epilepsy

• Epilepsy Foundation 
• Nemours Foundation: Epilepsy (epilepsy in children and teens)
• National Institute of Neurological Disorders and Stroke: Epilepsy Information Page

The Big Picture

Epilepsy is a brain disorder in which clusters of nerve cells, or neurons, in the brain sometimes signal abnormally. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing strange sensations, emotions, and behavior or sometimes convulsions, muscle spasms, and loss of consciousness.

WebMD: 10 Important Questions to Ask Your Doctor About Epilepsy

To help keep up on the latest discoveries in epilepsy research, check out this site:

The National Society for Epilepsy: Recent Events, News and Developments in Epilepsy

Your Epilepsy

Figuring out the best treatment for you depends on understanding what type of seizures you're experiencing:

Epilepsy Foundation: Seizures & Syndromes

Your World

After being diagnosed with a chronic and potentially serious disease such as epilepsy it's understandable for patients to experience a flood of emotions. Talk with your loved ones and consider connecting with a support group, either online or in person. Here's some help managing difficult feelings:

Epilepsy Toronto: Behavior and Emotional Changes in Persons with Epilepsy

Children with epilepsy may have trouble dealing with their feelings about having epilepsy too -- here's some sound advice for parents to help their kids: 

AboutKidsHealth: Epilepsy and Emotions

As difficult as a diagnosis of epilepsy is for you, it may also be hard on those who love you; here's some guidance on how to talk to family and friends and help them learn more about this condition:

EverydayHealth: How to Talk to Your Family About Your Epilepsy Diagnosis

Epilepsy Myths

• "You should put something in an epileptic's mouth during a seizure to prevent him from swallowing his tongue."
  
• "You should physically restrain someone having a seizure."
• "Most cases of epilepsy are inherited."

Information and Recommended Links for Survivors

• Epilepsy Foundation: Coping with Epilepsy
• About.com: Epilepsy & Seizures - Coping With Your Epilepsy
• AboutKidsHealth: Coping with Epilepsy

Types of Treatment

While there is no known cure for epilepsy drugs can treat the symptoms and can reduce the number and the severity of seizures: 

Mayo Clinic: Epilepsy Diagnosis and Treatment Options

The Epilepsy Foundation covers other types of treatment as well:

• Vagus Nerve Stimulation
• Surgery
• Ketogenic Diet
• Treatment for Children
• Journal of the American Medical Association: Patient Page - Epilepsy Surgery [PDF]

Possible Treatment Side Effects

The Epilepsy Foundation sums up common side effects like drowsiness, irritability, and nausea, of epilepsy medications:

Treatment Options: Medications - Side Effects

Holistic Treatments

• WebMD: Are There Any Alternative Treatments for Epilepsy?
• Epilepsy Foundation: Ketogenic Diet
• Epilepsy Foundation: Ketogenic Diet for Children

Home Therapies

Self-care and sticking to a healthy lifestyle that includes plenty of rest, a balanced diet, and regular exercise are important to successfully managing your epilepsy:

Epilepsy Foundation: Wellness

Creating a Support Circle

• Set up your TSC survivor profile.
• Join support groups of other survivors or start your own.
• Interact and provide updates on your TSC profile or in the TSC forums.

Insurance & Work Matters

Health Insurance

Finding health coverage if you have a pre-existing condition can be difficult and expensive, but you can do it:

Epilepsy Foundation: Insurance - Health Insurance

Work Matters

Under the Americans with Disabilities Act you do not have to tell your employer about your epilepsy unless your disease affects your ability to perform your work-related duties. Learn more at:

• The US Equal Employment Opportunity Commission: NEW FACT SHEET ADDRESSES WORKPLACE RIGHTS OF PEOPLE WITH EPILEPSY UNDER DISABILITIES ACT
• Epilepsy Foundation: Employment

Health-care Providers Who Can Help

A neurologist will help you manage your epilepsy, but you'll also continue to see your primary care physician.

Resources to Find Doctors

• American Academy of Neurology: Find a Neurologist
• Wrongdiagnosis.com: Doctors and Medical Specialists for Epilepsy
• Epilepsy Foundation: Choosing a Doctor

The Emotional Rollercoaster

Living each day with the knowledge that you have an unpredictable neurological disease could be an emotional strain for anyone. For many, the emotional aspects of epilepsy – of not knowing when a seizure might happen, for example – are worse than the physical ones.  What’s important is that you continue living your life normally, participating in the same daily activities you've always enjoyed.

Support groups, whether online or in person, can also be important. Keep phone numbers of your support team handy at all times. Find websites with success stories of people with epilepsy. Remember, for most people, epileptic seizures can be controlled with medication, so developing a positive mental attitude is important if you want to level out the emotional rollercoaster you’re sure to be on at times.

• Epilepsy Foundation: eCommunities (online)
• Epilepsytalk.org (listserv)

Books Survivors of Epilepsy Recommend

• Epilepsy: Patient and Family Guide by Orrin Devinsky
• Living Well with Epilepsy and Other Seizure Disorders: An Expert Explains What You Really Need to Know

Communicating with Your Health-care Providers

If you find that your brain sometimes simply shuts down when your doctor begins to talk to you about your condition, you're not alone. Sometimes it may feel like there's too information to take in. If that's the case, ask a relative or a friend to go to your doctor’s appointments with you.  Encourage your advocate to ask questions, too, and to take notes. Don’t be afraid to ask your health-care provider tough questions, including the ones you’re afraid to hear the answers to. A good strategy to prepare for a meeting with your doctor is to write down any questions you have beforehand. Be sure to ask your health-care provider to repeat something or to explain it in different terms if you don't understand.

Dealing with Epilepsy: Information and Recommended Links for Co-Survivors    

How You Can Help

• Assist your friend or family member with their day-to-day duties or chores if they ask. Strive to find a balance between helping and allowing them to do for themselves.
• Don't exclude your survivor from activities or decisions; this could contribute to feelings of helplessness.
• Involve your survivor with others and don't focus on their disease.

What to say    

• "I will support your decisions about treatment."
• "You seem upset; do you want to talk about it?"
• Tell them how much you care about them.

What Not to Say

• "Don't worry, we'll find a way to make this all go away."
• "We'll go to every doctor and spend as much money as it will take to get you well."
• "You won't have to lift a finger."

Things You Can Do for a Survivor Every Day

Offering day-to-day support is a great gift to give a family member with epilepsy or a friend/neighbor who's been diagnosed with this disease. Ask if there are ways you can help out.

How to Build a Support Network

• Set up your TSC co-survivor profile.
• Create a support group for your friend or family member.
• Interact and provide updates on your loved one's progress.

How to Help a Survivor Deal with Day-to-Day Challenges

• How does a teen with epilepsy deal with common problems like drugs and alcohol at parties? Epilepsy Foundation: Day-to-Day Living
• Learn the basics of living with epilepsy from A to Z: Epilepsy.com: Living with Epilepsy 101 - The Basics

Remission / Recovery / Recurrence

It's not uncommon for children to outgrown epilepsy and never have a seizure as an adult. But many adults with epilepsy, too, can successfully manage their condition and lead a normal life. Here's how to thrive in this period of recovery as a survivor with epilepsy:

• WebMD: Understanding Epilepsy - Prevention
• Epilepsy Foundation: Personal Stories About Epilepsy

Give Back

What helped you while you were dealing with your diagnosis, undergoing treatment, or as a survivor? Take a look back at your journey and share with others what helped you and what you wished you would have known or done. You can create a TSC profile, reach out to other survivors, join support circles, or share your story at The Survivors Club. Check out some of the best charities for supporting epilepsy research or offering support to epileptics: 

• Epilepsy Foundation
• Citizens United for Research in Epilepsy

Approximately 30 percent of epileptics don’t respond to traditional medications, and some seizures - though not most - do result in lasting brain damage. Many patients and those who love them find they are unprepared when the worst case happens. Here's some help to get you through this very difficult time:

• Epilepsy Foundation: Depression and Epilepsy
• Epilepsy Foundation: The Silent Issue - Epilepsy as a Cause of Death