Eastbourne mother suffers from 20 seizures a day

An Eastbourne mother-of-three says she wants to raise awareness of the condition which causes her to suffer from 20 seizures a day.

Zoey Grimes and her husband Paul are hoping to raise awareness about NEAD. SUS-211103-105952001
Zoey Grimes and her husband Paul are hoping to raise awareness about NEAD. SUS-211103-105952001

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.

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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.

“So she came round and she had an assessment with Zoey at the house and now she liaises with the doctors for us and hospitals and stuff like that.

“She is trying to get us up into a specialist unit up in St George’s and it is a bit nitty-gritty trying to get Zoey to get in there which is an intense treatment.

“I think they stay in for six weeks as a possibility and it is multidisciplinary team. So it is a CBT therapist, language therapy, physios, psychotherapy, it is like a really intense course for people with Zoey’s condition.”

Mr Grimes also explained how his wife did a charity walk just months after her first seizure.

Mr Grimes said, “All of this started because of what Zoey did. Last year, even after she had her first seizure because we weren’t too sure, we thought it might have been a one-off because we were told that a high percentage of adults at some point in their life will have one seizure, Zoey went and did charity walk for good.

“She walked from Eastbourne to Brighton. I think a month and a half after the first seizure and ever since Zoey put her story up on social media and Glove Up For Good looked at that.

“That is why they are doing a walk themselves now from Brighton Pier to Eastbourne Pier on April 3.

“So it is kind of because Zoey did that walk that we are getting all of this extra help so it is because of Zoey doing that, she has kind of helped herself unknowingly.”

Glove Up for Good is a charity-orientated boxing club in the south east which aims to raise money for a number of good causes.

Due to Mrs Grimes’ NEAD her husband sometimes has to communicate on her behalf.

Mr Grimes said, “It is going to be a long road but Zoey is quite a determined character and she is quite a driven women so if anyone is going to beat it, it will be Zoey.”

The couple also had a message for the people of Eastbourne.

Mr Grimes said, “The attacks are very real. It is a disorder that very little is understood about it.

“They have done the MRI scans to make sure it is not a tumour, we have had that and there is no tumour, and there is nothing else they can do which just makes you feel a bit helpless.”

If you would like to learn more about NEAD click here and to view Mrs Grimes’ videos where she talks about her disorder click here.