If you have just received a diagnosis of epilepsy, you are probably experiencing some very mixed feelings. You might be 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 unusual experiences.
In the coming days, weeks and months, you will likely feel a rollercoaster of emotions. Still, research shows that people who are diagnosed with chronic conditions like epilepsy manage best when they face it head on. Of course, this is easier said than done, but accepting the diagnosis and developing a plan to live with epilepsy can help you cope with this condition.
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. Here are our tips and insights if you’ve recently received a diagnosis of epilepsy.
If you recently received a diagnosis of epilepsy, it's really helpful to get as much information as you can about the condition, how your seizures can be treated, and things to look out for.
Epilepsy is a chronic medical condition which makes you have recurring, unprovoked seizures. An unprovoked seizure means that the seizure was caused by a specific disorder in your brain (rather than something like alcohol withdrawal or low blood sugar).
It's also useful to know exactly what a seizure is. Normally, 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 epilepsy specialist. You might find it helpful to use our 15 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 and most important 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 of the most common ways to treat epilepsy include:
- Anti-epilepsy drugs
For most people who have just received a diagnosis of epilepsy, medication is the first line of treatment. There are many anti-epilepsy drugs 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 will be started on a low dose of anti-epilepsy medication to see how your body reacts to the drugs. Your doctor may then choose to increase the dosage, or change the medication depending on how it works for you.
Anti-epilepsy medication can have quite strong 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 anti-epilepsy drugs don’t control their seizures.
For some people, surgery can help ‘cure’ their epilepsy, or significantly reduce how often they have seizures. Doctors might be able to identify a specific part of your brain that’s triggering the seizures and remove it.
- Implanted medical devices
There are several kinds of medical devices which can help control the frequency and severity of your epileptic seizures. These devices work in different ways, but they essentially work like a pacemaker, sending small pulses of electricity into your brain. This can reduce the frequency and severity of seizures.
- 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. While this kind of diet isn’t to most people’s taste, it can be effective for controlling seizures.
- Seizure triggers
Many people with epilepsy notice that they have seizure triggers - specific events or situations that mean they’re more likely to have a seizure. These include stress, alcohol consumption, tiredness, flashing lights, among other triggers. By being aware of your triggers, you can find ways to avoid them.
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 include:
Depending on the kind of seizures you have, you may be at risk of physical injuries from falling over, hitting hard edges, dropping objects and so on. There are various steps you can take to reduce these risks, including wearing loose fitting clothing, putting padding around sharp edges in your home, and cooking on the back stove, among other precautions.
It is useful to develop a first aid plan for your seizures. There are many first aid seizure plans available online. You can download these and 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. We do not know 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. There are various things you can do to reduce the risk of SUDEP.
Seizures are highly disruptive and unpredictable, which can make living with epilepsy difficult. Many people with epilepsy experience periods of anxiety or depression. It’s valuable to monitor how you’re feeling, and seek out support - there’s so much help available.
How will epilepsy affect your life?
A new diagnosis of epilepsy is likely to 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?
You should be able to do most jobs with epilepsy, and it 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 be able to do if your seizures are not fully controlled.
After receiving a diagnosis of epilepsy, many states in the US will temporarily ban you from driving. If you can control your seizures and show you’ve been seizure free for several months, you will often be able to start driving again.
If you are at high school or are going to college, you might find it useful 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.
Many people with epilepsy are able to continue living the life they want, although you might need to take some precautions. By taking some precautions, you may be able to participate in many forms of exercise, travel, concerts and events, and drink and eat what you like. Of course, each person is different, so speak to your doctor if you have any doubts.
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 will be able to point you in the right direction.
Some common places to get support after a diagnosis of epilepsy include:
- In person support groups for people with epilepsy, which you can find online or by asking your doctor
- The Epsy App, which can help you with recording your seizures and remind you to take your medication, as well as our community on Instagram, Twitter and Facebook
Living seizure free
The ultimate goal for anybody who is living with epilepsy is to achieve the highest quality of life, and even seizure freedom. While this isn’t always possible right away, the good news is that there are constantly new breakthroughs in epilepsy treatment coming through, as well as research into new drugs and medical devices.
Keep learning about living with epilepsy, different kinds of seizures and health & safety issues on our blog.