Eastbourne mother suffers from 20 seizures a day

Zoey Grimes of Beatty Road, had her first seizure in May 2020 and was subsequently diagnosed with non-epileptic attack disorder (NEAD).

People who suffer from NEAD have seizures which do not come about due to a physical cause.

Mrs Grimes said, “So it can come in any stage of your life and there can be different things – it can be childhood trauma, certain types of trauma, stress, and basically it is like your brain sometimes, it is called fight or flight, and it is like if you open too many internet things on your computer your computer will end up crashing so that is what my brain is doing.”

Since May Mrs Grimes’ husband, Paul, has become her full-time carer.

Mr Grimes said he recalled her first seizure. “We were just sitting on the sofa watching TV and then Zoey said she felt unwell so I got her a drink of water, came back and a couple of minutes later she had a funny feeling in her hands and then she says, ‘I really don’t feel well,’ and then her eyes just went to the back of her head and then that was it really.

“I just put her in the recovery position and I just called the ambulance.”

Mrs Grimes said, “It can be convulsions, shaking, always eyes rolling back into the head. I am unable to communicate, react and I also get some symptoms of ticks and sometimes not being able to walk. So it will take a day to be able to start walking again.”

Mrs Grimes also explained her confusion following her first seizure, she said, “When it first happened it was just so unlike me.

“I was fit and healthy. Really into my fitness, working and so it was kind of a shock so at first they kind of did a lot of tests at the hospital but sent me away. They referred me to a neurologist.”

The former hairdresser also talked about coming to terms with the disorder.

Mrs Grimes said, “I cut myself off completely. All I wanted to do was just be with my family. It is very hard.

“You’re embarrassed. You feel like you are not believed and sometimes it is hard getting the diagnosis but for me I was quite lucky that I did get my diagnosis quite quickly and we are waiting for treatment.”

After being diagnosed in September Mrs Grimes had to change her life in a number of ways.

Mrs Grimes said, “Mentally I am very positive but it is very hard. Luckily I have such a supportive family around me, the kids and Paul, but I can’t go out by myself.

“I can’t drive anymore. Cooking is a problem. Sometimes I can’t even get off the sofa and there is just so much I can’t do now but before I would work full-time, I would go out for runs by myself, take the kids outs.

“I can’t take my children out by myself now so I have just lost my independence completely.”

In regards to how it had affected their family life Mr Grimes said, “It has just changed everything. Our whole world has been turned upside-down. We can’t really go out as much because Zoey has that amount of seizures.”

The couple’s children have also had to learn about how they can care for their mother when she has a seizure.

Mrs Grimes said, “It was a shock at first because they had never seen anything like that and they are not used to Mummy being this way but they all kind of have a little job each.

“One of them gets a teddy and puts it in my hand. The other one, when we do go out, he tells passersby that they don’t need to ring an ambulance and that we have got it under control.

“My 11-year-old daughter, she is amazing and she looks after me when my husband goes to the shops or stuff like that and she is really caring and she has had to call 999 before because of a really bad seizure.”

Due to Mrs Grimes’ condition her husband has had to take the reins and liaise with medical professionals about potential therapy.

Unfortunately, there is no medication to aid people with NEAD but sufferers can benefit from cognitive behavioural therapy (CBT).

Mr Grimes said, “They have referred us through to different hospitals for CBT and they have tried to push it through quicker because they say the sooner you get the treatment the better the outcome and Zoey is a young mum of three.

“That is why they are trying to get it through quicker but we are still waiting and it could be a hell of a long wait. We have no idea.”

Mrs Grimes wanted to share her story to raise awareness of her condition and to show sufferers they are not alone.

Mrs Grimes said, “They are not alone and as hard as it is you should try and speak out because since I have people have tried to help us and I have been offered CBT.”

After coming forward with her story Mrs Grimes has been offered help from a number of people.

Mr Grimes said, “There is a brain injury specialist nurse, her name is Sarah, and she got in contact and said she could help us.