How does the epilepsy experience change as you get older?
How will your experience of epilepsy change over time? If you were diagnosed with epilepsy while young, read how it might change in time
It can be fun to think about where your life will take you in 10, 20 or even 30 years’ time. Maybe you will be living in a different state, running your own company or studying at college. If you have epilepsy, you might also be wondering how your condition will develop too.
Everyone's experience of epilepsy is unique to them. But if you were diagnosed with epilepsy while you were a child or a teen - or it started in early adulthood - you might have lots of questions about how it could develop.
This article is intended to answer questions for younger people whose epilepsy is idiopathic (cause unknown) or genetic - not people who developed it after a head injury or from getting a brain tumor.
Does epilepsy go away with age?
Analysis suggests that about seven people in 10 who get diagnosed with epilepsy find that it eventually disappears. Many people achieve seizure freedom while still taking their anti-epilepsy drugs (AEDs), but others can eventually stop taking medication entirely (this should only be done with your doctor’s approval).
For many people, seizures go away within a few years of them starting. But even for people who have seizures for a long time, they tend to become less frequent as they get older. One study found that 10 years after seizures began, 65% of people will have had at least five years seizure-free. What is more, 76% of people experienced at least five seizure-free years after 20 years.
This is of course positive to know, but it's important to be aware that seizure freedom varies quite a lot depending upon the individual and their type of epilepsy. An analysis of research into the outlook for epilepsy shows:
- People who have refractory epilepsy, which is when seizures can't be controlled by medication, are more likely to live with seizures for the long term. Nevertheless, they can expect extended periods without seizures as they get older.
- People who have other neurological difficulties or learning disabilities are less likely to become seizure free.
- People who have ten or more seizures in the first six months after diagnosis are less likely to achieve seizure freedom, compared to people who have fewer seizures to begin with.
- It is unclear whether the outlook for people with generalized seizures is better or worse than it is for people with focal seizures.
- People who stop taking their medication are more likely to have new seizures than those who keep taking AEDs.
- People who have brain surgery are more likely to achieve permanent seizure freedom.
- People with temporal lobe epilepsy are less likely to achieve long term seizure freedom than people whose seizures start in another part of the brain.
Does epilepsy get worse with age?
If you were diagnosed with epilepsy while you were a child or a teenager, the condition is likely to eventually go away or become easier to control. That being said, it can get worse for some, while other people continue having occasional seizures for their whole lives.
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Living with epilepsy as you get older
With appropriate treatment and care, many people eventually achieve either complete seizure-freedom - or at least have long periods without them. As you get older, there are a few other things to think about when it comes to managing your epilepsy:
- Pregnancy and birth control
If you are trying to get pregnant and have previously had epilepsy - or are still taking anti epilepsy drugs - it's important to speak to your doctor about your plans. It’s also important to know that some seizure medication can make birth control pills less effective.
- AEDs may become less effective
As your body gets ‘used to’ your AEDs, they might become less effective at controlling your seizures. If you notice you’re having more seizures, your doctor may recommend changing your medication or dosage.
- Dating and relationships
As you get older, you might want to start dating. It's important to think about how you will communicate with any potential partners about your seizures.
- Work and school
When you attend high school, college or join the world of work, it can be useful to think about what this will mean for seizure management.
- Watching your mental health
A long term condition
If you began having seizures when you were a child or a teenager, it is important to know that epilepsy does go away with age for many people. That said, it can still affect your life - whether or not you achieve seizure freedom.
You might find it helpful to track your condition in Epsy, which lets you monitor how many seizures you've had, what medication you've taken, and even share this information with your doctor.