Living With a Seizure Disorder
Adjusting to life with a seizure disorder can be a challenge. It can affect your career, schoolwork, relationships with family and friends, and most importantly, your self-esteem and self-confidence. You may feel overwhelmed and anxious that a seizure might occur at any time and depressed that you have this chronic condition.
The good news is that with today's antiseizure medicines, people with most types of epilepsy can control their seizures. There's a good chance you can, too.
The more you know, the better you can take care of yourself. With knowledge and the right treatment plan, people with epilepsy can look forward to full, independent lives.
Taking care of yourself
Taking antiseizure medicine exactly as prescribed is a good start. It's possible to gain even more control over epilepsy by becoming aware of the things you can do right now to help improve daily life.
Here are some things you can do:- Take the Treatment Satisfaction Questionnaire and discuss it with your doctor to help develop a treatment plan that's right for you.
- Keep a record of your seizures using the Events Calendar. The calendar can help you track your seizure patterns and pinpoint your triggers so you can plan to avoid them when possible.
- It can help to count out medicine(s) ahead of time, separating each dose so you can tell whether or not you have taken it. Pill boxes with compartments for each dose can be convenient. Write out the medicine schedule and put it where you can see it every day. Keeping a copy in your purse or wallet can help, too. Some people like to set the alarm on their watches, PDAs (personal digital assistants), or cell phones to remind them when to take their medicine. Come up with a system that works for you.
Helping to control seizures
In addition to taking your antiseizure medicine as directed, here are some things you can do that may help control your seizures:- Eat well. If you are interested in a special diet, make sure to discuss it with your doctor before starting it.
- Get plenty of rest and stay on a regular sleep schedule. Sleep deprivation is a common and powerful trigger of seizures.
- Limit alcohol intake and don't smoke cigarettes. Both alcohol and cigarettes are known seizure triggers.
- Avoid non-prescription medicines containing ephedrine and pseudoephedrine, found in many cold/allergy products. Certain prescription medicines, including some antibiotics and stimulants, can also cause seizures. Discuss any medicine or supplement you plan to take with the doctor—this includes herbal and nutritional products from the health food store.
- Stress is a common seizure trigger. Your doctor can recommend specific relaxation techniques that are safe for people with epilepsy.
Epilepsy and outside activities
While skydiving and motor racing are not recommended (because a moment's inattention could lead to injury), baseball, jogging, and many other sports are reasonably safe for people with epilepsy. In fact, there's evidence that regular exercise may improve seizure control in some people—check with your doctor. It's important to avoid dehydration, overexertion, and hypoglycemia, which can increase the risk of seizures. Participation in any of these activities should only be done after talking with your doctor.
You may be able to drive a car if seizures are well controlled. Most states require proof that a person with epilepsy has been seizure-free for a few months to several years. Check the regulations in your state. The Department of Motor Vehicles may require a doctor's letter confirming that you meet your state's requirements.
Getting the support you need
Family and friends will be there for you, but you may find you need more support. An epilepsy support group can be a great place to share your hopes and triumphs, as well as questions and concerns. The Epilepsy Foundation, the American Epilepsy Society, or Epilepsy.com can help you locate a support group that's right for you.
In most cases, people with epilepsy can work to support themselves and their families. If your seizures are so severe or frequent that it's not possible to work, you may qualify for assistance from a federal program:- Supplemental Security Income (SSI) is for people who have limited savings, income, or possessions.
- Social Security Disability Insurance (SSDI) is for people who have worked for a certain period and paid into Social Security through payroll deductions or whose parents have contributed.
Call your local Social Security office for details, or contact your local Epilepsy Foundation office.
People with epilepsy have rights, too!
Two major federal laws protect the civil rights of people with epilepsy:- The Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act of 1973, states that every child with a disability is entitled to a free, appropriate public education.
- The Americans with Disabilities Act (ADA) protects against discrimination of any kind.
If you or someone you know has been discriminated against because of a disability (including epilepsy), you can file a complaint with your regional Department of Education's Office for Civil Rights (OCR). You must file your complaint within 180 days of the event. To locate your regional OCR, call 1-800-421-3481 or visit the OCR Web site.