Anxiety and epilepsy
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Key points
- It’s common for people with epilepsy to feel anxious
- You might feel anxious for many reasons. Epilepsy can affect your life in lots of different ways
- Sometimes anxiety and seizures can be mistaken for each other
- Help is available. There are lots of things that you can do to manage anxious feelings
What is anxiety?
Anxiety is a feeling of unease, like worry or fear. It is a normal feeling we have when we are feeling stressed or threatened. It can be part of our body’s natural response when we are facing a problem. Normal anxious feelings are usually temporary and improve as the situation passes.
But anxiety can become a problem if it begins to interfere with your daily life. You might notice that your anxious feelings have become very strong or appear more often. Or, they might stop you from doing the things that you want to do.
If anxiety becomes very severe and disruptive, it is sometimes called a phobia or an anxiety disorder.
What does anxiety feel like?
Anxiety can affect your mind and body in different ways. Below are some common symptoms of anxiety. These might change in intensity or come and go over time.
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Read a transcript of the infographic
Here is how anxiety might affect your thoughts and feelings:
- Feeling worried all the time
- Feeling tired
- Not being able to concentrate
- Feeling irritable
- Changes in how you sleep
- Feeling low or depressed
- Feeling overwhelmed
- Feeling like something terrible might happen
- Worrying a lot about these feelings and sensations
Here is how anxiety can sometimes be felt in the body:
- Having fast or irregular heartbeats (palpitations)
- Sweating
- Having a dry mouth
- Having muscle tension and pains
- Trembling
- Having numbness or tingling in fingers, toes or lips
- Breathing fast
- Feeling sick
- Feeling dizzy or faint
- Having stomach problems
Who gets anxiety?
Anyone can develop anxiety. It is very common. In a UK survey, around 1 in 5 people reported experiencing high levels of anxiety on a given day.
Studies suggest that anxiety is more common in people with epilepsy compared to the general population. One study found that around 1 in 3 people with epilepsy also had an anxiety disorder.
Anxiety symptoms can sometimes be a big part of other conditions, such as obsessive compulsive disorder (OCD) or post-traumatic stress disorder (PTSD). Some people with anxiety can also experience other common conditions, like depression at the same time.
How is anxiety linked to epilepsy?
Epilepsy can cause anxiety for a range of reasons. Here are some ways that anxiety and epilepsy are connected.
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Anxiety as part of the seizure
Some people report having feelings of anxiety or fear around the time that they have a seizure. This is called peri-ictal anxiety. These feelings might appear in the hours or days leading up to a seizure, during a seizure, or just after a seizure.
Some people call these seizure-related sensations an ‘aura’.
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Anxiety as a side effect of epilepsy treatment
Anxiety can be a side effect of some epilepsy medicines.
Talk to your GP or epilepsy specialist if you think your anxiety might be a side effect of the treatment you are having. They might be able to make changes to your medicines that could help.
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Anxiety linked to your experience of having epilepsy
You might feel anxious because of experiences or events related to your epilepsy.
- Receiving or waiting for a new diagnosis can be a very uncertain time. It can be hard to adjust to living with what may be a very disruptive condition
- You may also need to overcome new challenges such as driving and travel
- Waiting for medical appointments can also bring feelings of uncertainty and worry
- Fears around having a seizure are also very common. You might feel anxious about doing things with other people or going to different places in case you have a seizure
- People with epilepsy also tell us that anxiety can be a significant problem for those who live alone
- Others worry about the impact of their epilepsy diagnosis on family and loved ones. Particularly how living with someone with epilepsy can affect them
Whatever is causing your anxiety, there are things that you can do to help. We talk about some of these things at the bottom of the page.
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General anxiety
Some people with epilepsy develop anxiety about lots of different things in daily life. These worries may or may not be linked to having epilepsy. Sometimes this is called generalised anxiety disorder.
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Hormones and pregnancy
Feelings of anxiety around pregnancy are normal. But some studies suggest that people with epilepsy may be more likely to have anxiety around the time of their pregnancy.
If you are affected by this, you can contact your midwife or GP for advice. Your epilepsy specialist nurse or epilepsy doctor can also help.
Anxiety is also common before and during the menopause. Read more about how this can affect people with epilepsy on our menopause and HRT page.
Can anxiety affect epilepsy?
There are close links between anxiety and epilepsy. Some people find that feeling very anxious or stressed can make a seizure more likely.
Anxiety can also affect epilepsy indirectly. For example, anxiety can cause problems with sleep, and not getting enough sleep can be a seizure trigger for some people. On top of this, increased worry about sleep and seizures can make anxiety worse. This can lead to a negative cycle.
There are things that you can do to help manage these kinds of anxious cycles. If anxiety is affecting your sleep, our sleep page has more information. Our counselling team has also created a video giving you some quick tips and tricks for better sleep.
What our supporters say about their anxiety
“I worry that I’ve forgotten to take my medication.”
“Whenever I don’t or can’t sleep, I worry that the lack of sleep will cause a seizure.”
“When I’m at home alone, I’m worried I’ll have a seizure.”
“Fear of a seizure happening when I’m alone, or at work.”
“The anxiety of not knowing when the next seizure will be.”
Can epilepsy and anxiety be mistaken for each other?
The symptoms of anxiety can look and feel a lot like the symptoms of some types of epileptic seizure. This is true for panic attacks.
This means that both conditions can sometimes be mistaken for each other and misdiagnosed.
It’s important to get the right diagnosis to make sure you get the right tests and treatment. You can help your doctor by gathering as much information as possible about your symptoms. Keeping a seizure diary or showing them videos of your seizures can be very useful.
It could also be worth seeking the advice of an epilepsy specialist. If you believe your symptoms have been misdiagnosed, you could ask your GP to refer you to an epilepsy specialist for a second opinion. You don’t have an automatic right to a second opinion. But you do have the right to ask, and your request should be considered.
Speak to your epilepsy nurse, tell your neurologist how you feel. Be open, don’t hold back. Also, Epilepsy Action helplines are there to support you and can help you.
Julia, Epilepsy Action supporter
Is it epilepsy or is it a panic attack?
It can be easy to confuse symptoms of panic attacks with symptoms of a seizure.
A panic attack is a sudden, intense episode of anxiety. They can feel very frightening and distracting. They usually last for between 5 to 20 minutes.
Symptoms of a panic attack
These can include:
- Overwhelming feelings of dread
- A fast heartbeat
- Flushing skin
- Sweating
- Nausea
- Shortness of breath
- Numbness and feeling disconnected (dissociation)
Many of these symptoms can also happen during a seizure. This can make it difficult to tell the difference.
Occasionally, breathing changes that happen during a panic attack can also trigger an epileptic seizure for some people. This can complicate things even further.
Differences between panic attacks and seizures
Some of the ways that panic attacks and seizures can differ include:
- How long they last. Seizures are usually much shorter than panic attacks
- Whether the person stays conscious. People generally stay aware and can interact with others during a panic attack. Many people lose awareness of their surroundings during a seizure. But this is not always the case. Some people who have some types of focal seizures can also stay aware
- Repetitive movements. Sometimes people having a seizure can make certain repeated movements, like jerking or arm movements
If you are unsure or worried about how you feel, you can contact your GP or epilepsy specialist nurse. Or use NHS 111 for help checking your symptoms. Call 999 in an emergency.
How can I get help?
Living with anxiety can be difficult. It can be hard to tell others what you are going through and ask for help. But you don’t have to go through this on your own. If you are struggling with anxiety, there is support available.
Your GP or epilepsy specialist can help you find the right treatment. Any treatment you are offered should be based on careful consideration of your condition and situation.
Talking therapies
There are many different types of talking therapy. Find out more about these on our page about getting mental health support.
During each session your counsellor or therapist will listen and talk with you. They can help you to work out ways of taking positive steps towards improving the way you feel. You may find you can begin to deal with situations in new ways that make them seem less stressful or difficult.
Your GP may be able to arrange therapy for you through the NHS. Or you can use the NHS Talking Therapies service to refer yourself. If you’re in Wales, Epilepsy Action has a counselling service that may be able to help. You can also pay to see a counsellor or therapist privately.
Medicines
Some epilepsy medicines have an anti-anxiety effect. Your doctor might recommend these for you if they’re suitable for your type of seizure and anxiety.
Or, your GP or a mental health professional might offer you a different medicine for anxiety. Some common anti-anxiety medicines include:
Tell your GP or epilepsy specialist if you are offered any of these treatments. This is to make sure that your new medicine works well with your epilepsy medicines.
What helps our supporters with anxiety
“I’ve started yoga, I’ve also learnt to take time away for myself, and to breathe.”
“Meditation and physical fitness has significantly helped me!”
“Take care of yourself and know your warning signs.”
“Planning my life to ensure I can get some decent nights sleeps to make me worry less.”
“Talk to someone professional/ friend. Monitor it. Maybe write it down.”
“Learn mindfulness.”
How can I help myself?
Living with anxiety can be difficult. But there are some steps that you can take:
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Connecting with others
Talking things through with people you trust can really help. It could be with a friend or relative, or you may prefer to speak to your GP or someone from a helpline. Our free advice and information helpline is open 6 days a week on 0808 800 5050.
We also have a live chat service and an email webform where you can post questions for our helpline advisors.
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Peer support
It can really help to share how you are feeling with people who have similar problems. They can understand what you’re going through. Epilepsy Action has some ways of connecting with others affected by epilepsy. Some of the organisations below may also know of anxiety-focused peer support groups.
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Self-care
Self-care is a skill that can be learned. There are lots of apps that can help you begin self-care practices, such as relaxation breathing exercises, meditation and mindfulness.
Expressing your feelings through writing in a journal, or music and art therapies can also help. And some people also find other complementary treatments like yoga or massage useful.
We talk a bit more about these and other techniques on our complementary treatments page. Some complementary treatments might not be recommended for people with epilepsy. If you are unsure whether a new treatment is for you, ask your GP or epilepsy specialist first.
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Physical health
Managing your sleep, having a healthy diet and taking regular exercise can all help you to cope with feelings of anxiety. As can avoiding too much alcohol and caffeine.
The NHS has more useful ideas about ways to enjoy a healthier lifestyle and ease symptoms of anxiety.
Where can I start?
The key to beginning any new practice is to start where you are, and to start small. Here are three ways you can begin now:
- Watch a short video: Our counselling team has created a short video taking you through five steps to wellbeing
- Try our free wellbeing course: Our free online epilepsy and wellbeing course contains lots of tips and tools
- Find out more: Visit our epilepsy and wellbeing pages for more inspiration
There are also many mental health organisations with specialist resources and tools to help manage your anxiety. We’ve listed some of these below.
Contact our helpline
We understand how difficult living with anxiety can be. Epilepsy Action are here to help answer any questions you might have.
You can call our helpline on 0808 800 5050 or chat to us online.
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