What to Do After Being Diagnosed With Epilepsy

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  • Epilepsy is a neurological disorder that affects 3.4 million people in the US, making it the fourth most common.
  • An early diagnosis and understanding of symptoms are important to managing epilepsy effectively.
  • It is essential to educate oneself on the condition, take medications as prescribed, recognize triggers, and join support groups or organizations.
  • Creating a seizure action plan should be done in order to have detailed instructions for emergencies. 

Epilepsy is the fourth most common neurological disorder, affecting approximately 3.4 million people in the United States alone. A diagnosis of epilepsy can be a scary and overwhelming experience, but it also doesn’t have to mean the end of your life as you know it. You can take steps to manage your condition and live a full and active life.

Early Signs of Epilepsy

The first step to managing your epilepsy is learning a seizure’s early signs and symptoms. Common signs include the following:

  • Uncontrollable jerking or shaking of one or more body parts.
  • Sudden changes in emotion, mood, or behavior.
  • Temporary confusion.
  • Loss of consciousness or awareness, including staring blankly for a few seconds to several minutes.

Once you’ve determined that you have epilepsy, it is normal to feel overwhelmed and scared. It is important to talk with your doctor and ask questions about your condition. It is also essential to do the following:

Educate Yourself About Epilepsy

One of the most important steps toward managing your epilepsy is understanding exactly what it is and how it affects your body. Educating yourself about the condition will help you maintain control over your symptoms and feel more in control of your health overall. Here are ways to navigate this:

Understand Your Medications

Your doctor or neurologist will likely prescribe anti-epileptic medication to help control your seizures. It is important to understand what type of medications you are taking and any potential side effects that may occur. Discuss any concerns with your doctor and follow the dosing schedule as recommended.

Know Your Triggers

Epilepsy may be caused by a variety of things. It is important to identify the triggers that can bring on a seizure, such as lack of sleep, stress, over-tiredness, and flashing lights. Take note of these by keeping a detailed diary and discussing them with your doctor. Taking steps to avoid these triggers or manage them if they occur is important for helping to prevent seizures.

Participate in Studies

Being part of epilepsy research is a great way to support the advancement of treatments and therapies for those affected by the condition. Participants of epilepsy research can help scientists gain valuable insights into the causes, effects, and management of epilepsy. This is also a great way to know more about the condition and better understand your treatment.

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Find Support

Having support from family and friends is essential to living with epilepsy because it can be difficult—and even scary—at times. It’s important to find people who understand what you’re going through and who will be there for you when things get tough. Aside from your friends and family, here are other ways to find support:

Online Support Group

There are many online support groups available to those living with epilepsy. Joining one of these groups allows you to connect and share your experiences with others in similar situations. This is also a great avenue to ask questions, get advice, and find support for those living with the condition for years.

Local Support Group

If you would rather connect with people in person, local support groups are likely available to those with epilepsy. These groups allow you to meet others who understand what you’re going through and can offer helpful advice or additional resources.

Join an Epilepsy Awareness Organization

Organizations like the Epilepsy Foundation and the American Epilepsy Society are dedicated to raising awareness of the condition, providing resources to those affected, and advocating for better treatments. Joining one of these organizations is a great way to find support from people who understand your situation and can provide helpful information.

Create a Seizure Action Plan

A woman consulting a medical specialist in a clinic

Another key step in managing your epilepsy is creating a seizure action plan. This is the most important document for you to have in an emergency. The plan should include detailed instructions about the following:

  • What to do if you have a seizure.
  • Who to contact in the event of an emergency.
  • A detailed list of medications, dosages, and potential side effects.
  • Any special instructions or considerations for those who may be assisting you in case of an emergency.

It is important to share this plan with family members or close friends, so they know what actions need to be taken if a seizure occurs or if medical attention becomes necessary at any point in time.

Living with epilepsy is not easy, but it doesn’t have to be a life sentence. With the right information and lifestyle modifications, you can continue living a full and active life. Take the steps necessary to understand your condition and educate yourself on the available resources to create a plan that works best for you. With this, you can take control of your epilepsy and live a meaningful and fulfilling life.

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