It is not uncommon for people with epilepsy to experience depression, anxiety or to sometimes feel suicidal. Some people may even develop personality disorders and psychosis. In fact, it is so common, that the overall rate of people with epilepsy experiencing a mood disorder stands at 25-50% higher than that of the general population. There is a relationship between epilepsy and mood disorders. The reasons for this relationship may be because:
- The part of the brain which is affecting certain seizure types is also affecting mood. The more severe the seizure, the more severe the mood.
- It is occurring as part of a person’s seizure pattern. Some people may feel a sense of hopelessness hours, or even days, before a seizure (pre-ictal). This feeling usually resolves after the seizure. Others may experience sadness, fear, anxiety and a sense of hopelessness, or suicide, during a focal-aware seizure, and this is called ictal depression. A low mood following a seizure is called post-ictal depression. People can become tearful, experience a sense of hopelessness, become irritable, have sleep problems or even experience suicidal thoughts. These feelings can last for 12-24 hours after the seizure.
- Some anti-convulsant medications can have a negative effect on mood.
- Finding the right anti-epileptic medications to stop seizures from happening can take some time. This delay creates uncertainty in a person’s mind and they may feel vulnerable, anxious or depressed.
- Living with a condition that is episodic can be unsettling and people can live in a state of ‘amber alert’ – not knowing when a seizure is going to happen.
- Living with a chronic condition can lead to negative feelings of sadness, anxiety, embarrassment and even anger.
- Epilepsy is a challenging condition. People with epilepsy are often stigmatised in society despite laws aimed to protect the rights of people living with a disability. People with epilepsy can have issues around employment, education, transport, housing, finances and social isolation etc. (https://ewct.org.nz/living-challenges-epilepsy/) Facing ongoing difficulties in life can cause a sense of hopelessness which can lead to depression and sometimes suicide.
- Other life’s challenges such as divorce, the death of a loved one etc are also challenging events. Many people with epilepsy who are experiencing low mood often go undiagnosed, and are therefore untreated, and this leads to a poorer quality of life. Screening for depression and the risk to suicide should therefore be mandatory during all medical appointments. Depression can be mild, moderate or severe. It can be a single episode, a chronic recurrent issue, or a life-long illness but, regardless of this fact, there is hope in it being treatable. The table below shows ‘feeling’ statements that could be asked over a two-week period. The higher the score denotes an urgent need to seek medical help.
The table below shows ‘feeling’ statements that could be asked over a two-week period. The higher the score denotes an urgent need to seek medical help.
| Statement | Never (1 points) |
Rarely (2 points) |
Sometimes (3 points) |
Often (4 points) |
|---|---|---|---|---|
| Everything is a struggle | ||||
| Nothing I do is right | ||||
| I feel guilty | ||||
| I’d be better off dead | ||||
| I feel frustrated |
Most often anti-depressants and psychotherapy treatments, such as cognitive behavioural therapy, are used to successfully to treat depression and anxiety. Some medical professionals may resist prescribing anti-depressants to people with epilepsy, believing that these medications lower seizure thresholds but, according to the The International League Against Epilepsy (ILAE), this association is a myth. Anti-depressants are safe to use and are an established way of treating people with depression, even those with epilepsy. Anti-depressant medications should be started at a low dose, and slowly, to avoid interactions and side effects. Sometimes dose adjustments are made over several weeks before they become fully effective. Medications may even be switched to another brand before getting good results. Any problems should be immediately reported back to the health professional.
A good number of children living with epilepsy will also experience depression or anxiety, and some of these children will have suicidal thoughts. Mood disorder symptoms may look different in children. Many will have low self-esteem and negative thinking but some will show irritability and disruptive behaviours, poor school performance, changes in sleep patterns or appetite. Parents and teachers are to be aware of mood changes in children especially if seizures worsen, or after a medication change. Medical help and mental health support will be needed.
Here is a table showing ‘feeling’ statements for children
| Statement | Never (0 points) |
Rarely (1 points) |
Sometimes (2 points) |
Very Often (3 points) |
|---|---|---|---|---|
| Everything is a struggle | ||||
| I have trouble finding anything that makes me happy | ||||
| I like crying | ||||
| I feel frustrated | ||||
| I think about dying or killing myself | ||||
| Nothing I do is ever right | ||||
| I feel sorry about things | ||||
| I feel sad | ||||
| I feel guilty | ||||
| I feel cranky or irritated | ||||
| I feel alone |
Suicide risk is a worsening world-wide phenomenon and, for those with epilepsy, the statistics look alarming. According to a recent report from Denmark, people with epilepsy have triple the risk of an attempted suicide and at least double the risk of death by suicide, compared with the general population. It is therefore vital to support people with epilepsy who may also be experiencing a mood disorder. Here are a few suggestions to gaining that support:
- Continuity of care through a trusted GP/neurologists/epilepsy advisor or other health professional to discuss concerns around anxiety, depression and suicide. Concerns around low mood are to be taken seriously and treated accordingly.
- Understanding what a mood disorder looks like.
- Using a helpline:
a) Need to talk? Free call or text 1737 any time for support from a trained counsellor
b) Depression helpline: Freephone 0800 111 757
c) Healthline: 0800 611 116 (Available 24 hours, 7 days a week and free to callers throughout New Zealand, including from a mobile phone)
d) Lifeline 0800 543 35
e) Samaritans: 0800 726 666