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What MyEpilepsyTeam Members Would Tell Those Who Have Just Been Diagnosed

Written by Torrey Kim
Posted on July 12, 2021

We all respond differently to information about our health. After learning you have epilepsy, you might be stunned, scared, or even relieved to have answers that explain the symptoms you’ve been experiencing. No matter what you’re feeling, you’re not alone. On MyEpilepsyTeam, there are thousands of others who have been in your shoes.

You can’t figure out everything about epilepsy at once, and you don’t need to. Taking small steps to adjust to your new reality can be empowering in a time of major change. According to the American Psychological Association, embracing active coping strategies, such as getting organized and making a plan for managing your health, can improve mental and emotional well-being.

“Newly diagnosed with seizures and scared to death,” one MyEpilepsyTeam member wrote. Another said, “I was diagnosed in 2008 — I was 18 years old at the time. It was the hardest transition I had to deal with in my life!”

For information and guidance about how to respond to a new epilepsy diagnosis, check out the following tips shared by MyEpilepsyTeam members.

It’s OK To Be Worried About the Unknown

Many members of MyEpilepsyTeam advise the newly diagnosed to take their time when absorbing the reality of having the condition.

“The trial-and-error phase of controlling meds can be hard and frustrating,” one MyEpilepsyTeam member said to a newly-diagnosed teammate. “I am currently going through all of this again as my seizure types and severity are fluctuating, so I know exactly how you feel right now. Tips I can offer would be to get all the sleep you can — believe me, it helps. Learn your triggers, whether it’s stress, being in a car with sunshine through the trees as you pass, ceiling fans, focusing too hard on a task, or watching TV or a computer screen in the dark. Often, these daily activities are overlooked as triggers, but pay attention to what's around you before seizure activity starts.”

Keep in mind that it will take time to get used to your diagnosis and your new reality. “The first years with epilepsy will always be a struggle,” one member wrote. “How long that takes differs for everyone … . I hope it gets easier for you as each year goes by. I understand how much struggling you’re going through. We all go through it.”

In addition, members like to remind those who are new to epilepsy that their disease course may be significantly different from someone else’s — and that’s normal. “Try not to get discouraged about what you read, because everyone's case differs,” one member noted.

Find What Works for You

Because of the variable nature of epilepsy’s disease course, many MyEpilepsyTeam members note that managing the condition requires time. “Coping with epilepsy can take time,” one member said. “We all have to try and live a difficult lifestyle that we never chose. You would also need to figure out whether or not your meds are working. Maybe you're having bad side effects … . Then make sure you find the right doctor who is trustworthy and also respects you.”

Some members have shared specific strategies that helped improve their symptoms. “For myself, the biggest is sleep,” one member wrote. “Took me a long time to accept that my body needs rest. Keeping stress minimal, blood sugars balanced. I eat lots of little meals all day. High protein and healthy fats, low sugar.”

Other members find that it can help to keep a trigger journal. “Are you keeping a pre-seizure journal?” one MyEpilepsyTeam member asked. “I did and realized that my trigger is hypoglycemia. If my glucose level drops, I can have a seizure if I do not get something sweet in me. I also learned that I do not drink enough water and dehydrate.”

Another member wrote, “Until coming to this site I had never thought of keeping a seizure journal — a great idea. And think of the contribution that we could make to science if there were a way of combining our journals. There's so much to learn by combining all of our experiences.”

Remember to talk to your health care team before you start any new activities, including adopting a new diet or significantly changing your sleep schedule.

Do Your Research

One overarching point shared by many MyEpilepsyTeam members is, you should learn as much as possible about your condition. “This is a safe place to speak your mind, ask deep questions, and research and read articles on your situation,” one member wrote.

Most importantly, members of MyEpilepsyTeam stress the fact that they are there for one another. “None of us are truly alone,” one member wrote. “We have each other. Together we can do what we can’t do alone!” Another said, “I have only been on this team for about two weeks, and reading other stories finally makes me feel I'm not alone.”

Talk With Others Who Understand

MyEpilepsyTeam is the social network for people with epilepsy and their loved ones. On MyEpilepsyTeam, more than 96,800 members come together to ask questions, give advice, and share their stories with others who understand life with epilepsy.

Have you recently been diagnosed with epilepsy? What questions do you have for others with the condition? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on July 12, 2021
All updates must be accompanied by text or a picture.

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Torrey Kim is a freelance writer with MyHealthTeam. Learn more about her here.

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