Agnes

A Mother’s perspective: Living with epilepsy and related psychosis

In this powerful and candid interview, we hear from Agnes, a mother whose son was diagnosed with epilepsy at the age of six.

She shares her family’s journey through the challenges of epilepsy, its effect on her son’s mental health, and the unexpected complications of epilepsy-related psychosis.

 

Can you tell us a bit of background on how your son was diagnosed with epilepsy?

Our son had his first seizure at the age of five and was diagnosed with epilepsy about a year later.

Seizures were few and far between to begin with then resulted in at least one every day.

Older he became the worse they presented and cannot remember last day he had which was seizure free.

Overall, he has several conditions including learning disability, intractable epilepsy, ADHD, autism diagnosis at age of 23. Thought disorder, anxiety, psychosis and associated mental health issues.

 

How did you feel when your son was diagnosed with epilepsy?

Absolutely Devastated! I had been saying for years something wasn’t right and was accused of all sorts because our previous baby died in 1990. (Meningitis aged 17 days).

Relieved, would be the other response that at last someone believed there to be something, and I wasn’t making it up!

 

What type of seizures does your son have and how does it affect him?

Over the years, he has suffered all kinds of seizures, and this has affected him in several ways.

Main ones are tonic-clonic and focal seizure with impaired awareness, although he has had drop seizures where he landed up in hospital a lot with split head, chin etc.

He has gone through the whole range of medication treatments, and we are currently back to Epilim and Lamotrigine which is where we started.

There was a time he fell backwards down a flight of stairs causing a huge swelling on the back of his head the size of an orange.

Another time he knocked himself unconscious and was airlifted to Southern General. (This would be his fav story to retell)

Being unable to be left alone yet craving independence. Being left out of parties and family events like weddings.

Having no friends and any people in his life are paid to be there. Regression with learning, speech and language assessments, over the years, have indicated decline in abilities and issues with word recall.

Memory issues and repeating himself or asking same questions over and over again.

 

How did you feel when your son was diagnosed with epilepsy related psychosis?

Never even knew it was a thing!

Again, I had been asking and saying something isn’t right and this was all happening just as we were to go into lockdown.

Having since requested his Psychiatry notes, I see now he fell through the net as a doctor changed and people who knew him well were no longer around.

Diagnosing took place at Quarriers where he was in for a period of assessment and changeover of medications. This was in February 2021.

Relief, again as we then knew what we were dealing with and professionals worked together to come up with plan to support him.

First medication had side effects, so we are now on a combined medication with slight improvement.

Also, somewhat bewildered to find out this was possible as we were never advised of any signs to look out for, even although they were there.

 

How has having epilepsy related psychosis impacted your son?

He has now become a bit of a hermit, afraid to go out the house in case someone steals his stuff.

We are working on this and having to be cautious about how we handle him getting out and about again.

Hearing voices and phones me all the time to shout at me because he hears me saying things I would never say and coming out with statements like – You don’t love me!!

Paranoid about people and afraid something bad is going to happen.

There was no reasoning with him, there still isn’t and if you disagree or try to correct him he is defensive and can be aggressive.

Complete contrast to having had a full schedule of activities everyday and out at Clubs meeting his friends and visiting family members for dinner every week.

 

What challenges have you faced being a mother of a son who is living with epilepsy and psychosis?

Main frustration and challenge for me is keeping everything together and juggling work while caring while managing a 24/7 support package.

Neurologists will deal with his Epilepsy where the Psychiatrist will only focus on his mental health. It would be wonderful if this were the same person and they could look holistically at his conditions to fully support him and the rest of the family.

Challenges for me as his mum and manager of his Direct Payment are to have appropriate staff who know how he ticks and how best to support him to be independent in his own home.

Access to support and other services can be challenging and having consistency with experienced professionals working with him helps.

People who have compassion and empathy are getting harder to find and the importance of having someone supportive and non judgemental dealing with us is paramount.

Life revolves around him. It always does! So thinking about a night out or visiting friends is troublesome especially when he phones constantly.

Stress levels are high and always on call, sleep is affected and ability to maintain friendships and have a social life outwith caring role.

I never realised how much this all impacted on me until he moved into his own home.

 

In what ways has epilepsy impacted your son’s mental health?

He was being treated for depression prior to the epilepsy related Psychosis diagnosis. Since then, he has experience full blown Psychosis and although he is blissfully unaware of what’s happening due to his level of learning disability this has been extremely difficult for the family and support workers around him.

 

What more do you think can be done to support people living with epilepsy who are struggling with their mental health?

Early intervention and support in a way that suits the person.

Although we have a Direct Payment and it is good in many ways, it is very isolating especially when he is refusing to go out the house.

My son has a keen interest in signing, so I have arranged for a British Sign Language tutor to visit him once a week and this is something he enjoys.

In home support would be beneficial as he is not going out at the moment. This would be out with his normal Personal Assistants as they too require support in such a challenging situation.

I know it impacts on the mental health of the people supporting him especially when he is looking for an argument or making false accusations.

Training and awareness raising would be helpful for staff supporting people with epilepsy and mental health.

 

What would you say to someone who has been recently diagnosed with epilepsy?

Find out all you can. Information is power! Link into carers groups or support groups for people living with epilepsy.

Recognise you are the expert in your own condition and how it affects you.

Don’t settle for less and keep fighting. Never lose hope and stay strong!

If you are struggling with your mental health, please call our freephone Helpline on 0808 800 2200 or email us at contact@epilepsyscotland.org.uk