If you have recently received a diagnosis of epilepsy, you may have some mixed feelings. You might feel scared or confused, trying to figure out why this is happening. But the diagnosis might also be a relief - explaining why you’ve been having certain experiences.
Following a diagnosis of epilepsy, you will likely have a lot of questions - your doctor will be able to give you more information about your specific situation. But it can also be valuable to learn more about epilepsy for yourself, what it is and how it is managed. This article provides an overview to help you get started.
At Epsy, our free app is used by thousands of people to record when they have seizures, to remind them to take their medication, and to learn more about their condition.
Get informed
If you recently received a diagnosis or epilepsy, it's helpful to get as much information as you can about the condition, how your seizures can be treated, and things to be aware of.
Epilepsy is a chronic medical condition which makes you have recurring seizures that are caused by a disorder in your brain.
It's also useful to know exactly what a seizure is. Our brains work by sending small electrical signals between our brain cells. These signals do everything from controlling how we move through to our thoughts and feelings. If you have epilepsy, these electrical signals can sometimes get scrambled, and this can affect your feelings, consciousness (being aware of what’s going around you) and your body’s movements.
There are many different kinds of epilepsy. So, while reading about the topic online is useful, to get specific information you should talk to your doctor. You might find it helpful to use our 20 questions to ask your neurologist.
What others say: Advice for the newly diagnosed from people who’ve been there
Developing a treatment plan
Following your diagnosis of epilepsy, one of the first steps is to develop a treatment plan with your doctor. This will be tailored to you, since each person’s seizures and the kind of epilepsy they have is unique to them. Some ways to treat epilepsy include:
1. Anti-seizure medications
For most people who have just received a diagnosis of epilepsy, medication is the first line of treatment. There are many anti-seizure medications (ASMs) available today and they are often very effective. Around two thirds of people with epilepsy find that their seizures can be controlled when they begin taking this kind of medication. It is important to follow your treatment plan, and remember to take your medication when your doctor or pharmacist recommends.
Sometimes, you may be started on a low dose of an ASM to see how your body reacts to it. Your doctor may then choose to increase the dosage, or change the medication depending on how it works for you.
ASMs can have a range of side effects, including headaches, dizziness, weight gain and mood change. They also don’t work for everyone – about one third of people with epilepsy find ASMs don’t control their seizures.
2. Resective surgery
Resective surgery aims to remove the part of your brain that is causing seizures. It can help stop some people’s seizures, or significantly reduce how often they have them. Doctors might be able to identify a specific part of your brain that’s triggering the seizures and remove it. But not everyone is able to have surgery.
Resective surgery is the most common type of epilepsy surgery, but there are some other methods too.
3. Implanted medical devices
There are several kinds of medical devices which aim to help control the frequency and severity of your epileptic seizures. These devices work in different ways, but they are a little like a pacemaker, sending small pulses of electricity into your brain. This can help reduce the severity or frequency of seizures.
4. Dietary treatments
For some people with epilepsy, certain diets can help with seizure control. The best-known example is the ketogenic diet, where you replace carbohydrates with fats as your primary source of energy. These diets can be effective for controlling seizures. You should only follow these diets with medical supervision.
Being aware of the risks
If you've recently received a diagnosis of epilepsy, it is important to be aware of some of the risks associated with this condition. These may include:
Seizure triggers
Many people with epilepsy notice that they have seizure triggers. These are specific events or situations that mean they may be more likely to have a seizure. Common triggers include stress, alcohol consumption, tiredness, flashing lights, and menstruation, among others. By being aware of your triggers, you may be able to find ways to avoid them. Ask your doctor for advice on how to do this.
Physical injuries
Depending on the kind of seizures you have, you may be at risk of physical injuries from falling over, hitting hard edges, or dropping objects, for example. There are various steps you can take that may help reduce these risks, including putting padding around sharp edges in your home, and using carpet with extra padding on the floor among other precautions. Ask your physician for advice on how to do this.
First aid
It is useful to develop a first aid plan for your seizures. Ask your doctor for recommendations and work with them to create a plan. The Epilepsy Foundation, a non-profit, also has a number of templates available for free on their website. You may wish to download these and use them with your physician to create plans tailored to you. You might then want to share them with friends, family, teachers, and coworkers.
Sudden Unexpected Death in Epilepsy (SUDEP)
SUDEP affects about one in a 1000 adults with epilepsy every year. [10] It is currently not known exactly why it happens, but some people can unexpectedly die from seizures. It appears that SUDEP is more common among people who have seizures during their sleep. Ask your doctor about how to reduce the risk of SUDEP.
Mental health
Seizures are highly disruptive and unpredictable. Some people with epilepsy experience periods of anxiety or depression. It’s valuable to monitor how you’re feeling, and seek out support - there’s help available.
How will epilepsy affect your life?
A new diagnosis of epilepsy can affect many parts of your life. While you may face some limitations, many people with epilepsy find they continue to enjoy a rich and fulfilling life.
Jobs and work - is epilepsy a disability?
Some people with epilepsy are able to work. Epilepsy is considered a disability in the United States. That means employers must make reasonable accommodations to the workplace to enable you to work. That said, there are a handful of types of jobs which you will not normally be able to do if your seizures are not fully controlled. These include being a pilot and joining the military, among others.
Driving
After receiving a diagnosis of epilepsy, you will need to be seizure free for a certain period of time before you can start driving again (the amount of time varies from state to state). You will also need your doctor’s approval.
Education
If you are in high school or are going to college, you might want to speak with your teachers about your seizures, so they know what to do in case you have one during class or on campus. It is also good to know that there are several sources of financial aid for people with epilepsy who are going to college.
Lifestyle
Many people with epilepsy are able to continue living the life they want - although you might need to make some changes to stay safe and reduce your risk of seizures. Ask your doctor about lifestyle changes. They can give you advice about things like drinking alcohol, exercise, travel or attending concerts and events. .
Suggested: 10 considerations for living with epilepsy
Getting support after a diagnosis of epilepsy
There is a huge network of nonprofits, healthcare centers, scientists, and online communities providing support for people with epilepsy. This means there are plenty of places to find the support you need. Often, the best place to begin is simply by speaking to medical staff at your local clinic. They should be able to point you in the right direction.
Keep learning about epilepsy
Epilepsy is a complex condition and there are so many different types of seizure disorders. Your doctor can also answer any specific questions about your diagnosis, treatment and personal situation too.
You can learn more about living with epilepsy, the many kinds of seizures, health & safety, and lifestyle issues in our blog.
