Newly Diagnosed with Seizures or Epilepsy: Where do I Find Information?

The hardest part of being told that you or a loved one has seizures or epilepsy is not knowing what it means and not knowing where to get help. Fear is a common feeling at this time, often arising from the unknown.

As the Epilepsy Therapy Project becomes part of the Epilepsy Foundation, people may notice changes in the www.epilepsy.com website with more to come. The goal is to make information from both organizations easier to find. In this column, I will highlight where people with newly diagnosed seizures and epilepsy can find answers or support to address some of their initial questions and concerns.

What is the difference between the terms seizures, seizure disorder, and epilepsy?

This is the most frequently asked question! Seizures are a symptom of a neurological problem. They consist of changes in behavior or awareness that are caused by an 'electrical storm' in the brain. Epilepsy just means that a person has had two or more seizures that are not caused or provoked by any other health problem. The term seizure disorder means the same thing as epilepsy. Click here,What is epilepsy?, to learn the basics of seizures and epilepsy. Then check out Understanding Seizures to learn more, for example when seizures could be an emergency situation.

Are all seizures the same?

There are many different types of seizures, generally described as either a focal seizure that starts in one area of the brain or a generalized seizure that can spread throughout both sides of the brain or the whole brain. Click here, Types of seizures, to learn about the different types. You may also hear different terms that describe types of epilepsy. These epilepsy syndromes basically give more information including the types of seizures, possible causes, what to expect, and other problems that may be associated with the seizures. Click here, Types of Epilepsy, to learn more about this.

What are seizure triggers or precipitants and what do I do about them?

Triggers or factors that can precipitate a seizure are situations or experiences that may make a person more likely to have a seizure. Some people never notice any triggers. Other notice that certain things happen more often when they have a seizure. To know if something may trigger your seizures, it helps to record when you have seizures and events that may have occurred around this. For example, have you been sick with another illness or fever, any new stressors, not sleeping well, missed medicines, drinking too much alcohol or using recreational or illicit drugs, or exposed to certain stimuli at the time of the seizure?

Take a look at these sections for more info on triggers and how to record them.

Seizure Triggers and Tracking seizures

What should I tell people to do if a seizure occurs again?

Understanding what to do when seizures occur is one of the most important things to learn, and to tell others. Most seizures are not an emergency and simple seizure first aid is all that is needed. There is lots of info about safety on this site. Start here by checking out general seizure first aid then specific steps for different seizure types. Responding to Seizures

What type of doctor or health care provider should I see?

Most people with a new diagnosis of epilepsy or seizures can be treated by a primary care doctor or general neurologist. However, if seizures are difficult to diagnose or seizure medicines are not controlling seizures after a year of trying medicines, then it's time to see a specialist. A physician specialist in epilepsy is called an epileptologist. There may be other types of health care professionals who would be of help.

Where can I find help in my community?

Finding information online is a great step for everyone. However, it also helps to learn about what type of supports, education, and programs about epilepsy are available in your own community. You may have specific questions that only someone who lives near you can answer. The Epilepsy Foundation has a nationwide network of affiliates or groups throughout the country. Most groups provide information and referral, educational programs, and support groups. Some provide many other services as well. Check out this link to Find an Affiliate close to you.

To find an epilepsy specialist, click here. Find a Doctor

To find an epilepsy center, click here Find a Center

I hope this information may help you get started and find the information and people you need.