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We all respond differently when we get major updates about our health.
After learning you have epilepsy, you might be stunned, scared, or even relieved to have a diagnosis that explains your seizures. No matter what you’re feeling, you’re not alone.
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. Active coping strategies like getting organized and making a plan for managing your health can improve mental and emotional well-being.
In this article, we’ll cover some basic steps to take to ease the stress of living with a new epilepsy diagnosis.
It’s normal to feel out of control when you first learn you have epilepsy. You may have a pile of pamphlets crowding your kitchen table and a head full of questions that you forget the moment you set foot in a doctor’s office.
You can begin to tame the chaos by using simple organizational techniques that create space for this new part of your life.
It can be helpful to store all of your printed doctor’s visit summaries, pamphlets about epilepsy, and other resources in a designated spot. This may help create some order and help you find information when you need it.
You don’t need a fancy filing system. A kitchen drawer, an old binder, or simply an orderly stack on your bedside table can make a big difference. In addition to helping you keep track of important papers, there’s evidence that controlling clutter is associated with better moods, less anxiety, and improved focus.
When living with epilepsy, sudden and often unexpected seizures can affect you at any time. When seizures occur, they can put you at risk for falls, burns, drowning, or a head injury.
To reduce the risk of injuries that can occur during seizures, consider taking some steps to “seizure-proof” your home. We recommend:
Keeping track of when and where seizures happen can help you identify seizure triggers, learn more about your seizure patterns, and collect useful information for your epilepsy specialist.
You can keep a diary or use an app on your phone to store information. If you’re tech-savvy, you might prefer to keep your seizure information in a spreadsheet on your computer. There are also seizure-tracking devices that can track certain types of seizures by detecting movement.
No matter how you prefer to track your seizures, be sure to include the following details:
Not all seizures are avoidable, but knowing your triggers can help you lower the risk of seizures. Once you learn what seems to trigger your seizures, you can take steps to avoid or minimize those triggers in everyday life.
After being diagnosed with epilepsy, you may need to adjust to life with more doctor’s appointments than you’re used to having. To make sure you get the most out of your medical care, follow these tips for appointment preparation and management:
Setting reminders or tracking appointments with a calendar or planner can help you avoid accidentally missing an appointment. If you already rely on a digital calendar or paper planner to manage work and family obligations, stick with that method for managing and remembering your new doctor’s visits.
If keeping a calendar is new to you, consider using what you’ve already got at home, such as a grocery list notepad or a piece of paper and a magnet on the fridge.
You can also ask your doctor’s office about phone call or text message reminders that can help you keep on top of appointments. Otherwise, you can set your own appointment reminders on your phone, computer, or tablet.
Keep a list of questions about epilepsy for your healthcare provider in a dedicated notebook or on your smartphone. Jot down your questions as you think of them and bring your list to your appointments so you can remember your questions and write down the answers.
Be sure to bring along your seizure diary, too. Your doctor can use it to learn more about your epilepsy and adjust your treatment options if necessary.
Missing a dose of your epilepsy medication or using it improperly can increase your risk for seizures, so it’s important to follow your doctor’s medication instructions closely. Never stop or adjust a medication without consulting your doctor.
Using an old-fashioned pill organizer is a great way to keep track of oral medications. You can also use a paper medication tracker. If you’re comfortable using a smartphone, consider downloading a medication tracking app or setting daily reminders so you never miss a dose.
To make sure you don’t miss a medication dose because you’ve run out, it may be helpful to call for a medication refill a few days before you finish your current bottle.
This is another situation where phone reminders can be helpful. Consider setting a reminder to pick up medications a week before you run out. That way, you’ll have plenty of time to get your refill if there are any unexpected complications (like a scheduling conflict or pharmacy closure).
To make sure you recognize medication side effects when they occur, you should familiarize yourself with common side effects that your epilepsy medication can cause. Be sure to report any side effects or changes in your symptoms while taking epilepsy medications.
Taking too much of a medication increases your risk of experiencing side effects or toxicity. If you miss a medication dose, don’t take an extra dose to make up for it.
Your doctor might encourage you to keep an up-to-date list of your medications and their dosages on you at all times. Consider keeping a wallet-sized emergency medication card on hand so that emergency providers can easily access the information if you overdose or have a medical emergency.
It can feel overwhelming to reach out after receiving an epilepsy diagnosis, but you don’t have to face your diagnosis alone. Support from loved ones, your medical team, and other people with epilepsy is crucial as you embark on treatment and adjust to your new normal.
There are a few basic steps you can take to start building your network of support.
You may not be ready to talk about your diagnosis with your loved ones right away. You may also not have time or be comfortable joining an in-person support group. That’s OK.
Connecting with members on MyEpilepsyTeam can be a first step toward finding support. Your community on MyEpilepsyTeam can provide an ongoing emotional boost whenever you feel worried or overwhelmed about life with epilepsy or want to celebrate a victory.
If you have the time and will, you may be able to find an in-person epilepsy support group in your area. You can find them by searching online or by asking healthcare providers who can point you in the right direction.
Sharing your epilepsy diagnosis with friends and family can be hard. They may be afraid and struggle to react helpfully. Try to remember that everyone is doing their best with difficult news.
If you’re able, let your loved ones know how they can be most helpful to you during this time, whether that’s helping with household chores or offering a listening ear. It can also help to share educational information about epilepsy with friends or family members and increase epilepsy awareness in your social circle.
You might not have known much about epilepsy before your diagnosis, but now you probably want to learn more. Your neurologist is a great resource for information, but you may also want to do your own research.
Remember to be cautious of what you read online, especially if someone is offering a quick fix or selling a cure. You can always reach out to your healthcare provider or patient liaison if you have questions about something you’ve read.
Read about ways to participate in Epilepsy Awareness Month.
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Has anyone ever felt pressured by their neurologist to try more medication? I have tried 6 different ones and none of them have worked.
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Good afternoon: The day is okay not the best still alive and well no seizures. Try to flee from negativity to avoid triggers. After researching my conditions with the help of my oncology. She stated… read more
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