A mum has told how she thought she was losing her mind after doctors failed to spot she had a life-changing condition. Rachel Wilson was told she had a "classic case" of anxiety by medics who had already said seizures she had begun to have were sinus related and down to an allergy.
It took four and a half years - and a Facebook plea - before the mother-of-one was finally given the diagnosis which left her reeling. And it also left her feeling a whole range of emotions from anger to sadness, she told the Mirror.
Sarah told how she had first discovered something was wrong as she drove son, Sonny, to Manchester. She said out of the blue she just felt strange.
She said: "Luckily, we were in traffic lights, and I just had this with a weird sensation. Almost like I was going to faint and I opened the windows. It was really strange.
"On the way home, I had another one and we were on the motorway and I was completely paralysed, I couldn't even indicate for the junction we needed to get off at. I was having them every time, while I was working. I couldn't put my finger on it."
After visiting the doctors, she was diagnosed with sinusitis and underwent surgery which made no difference and then sent for allergy testing. But as the covid pandemic struck access to medical help suffered.
She said: "I was misdiagnosed for a long time, and due to the prolonged misdiagnosis, I was made to feel like it was psychological.
"At times, I felt like I was going crazy. In the beginning, my symptoms weren't taken seriously. I wasn’t sent for any tests and so the diagnosis was delayed.
"I was given other diagnoses that were minor in comparison to epilepsy, ones which required a lot less investigation. My seizures were put down to sinus problems, an allergy and then anxiety.
"I was placed on a lot of antidepressants and anti-anxiety medications and told that once the depression eased, then the 'anxiety attacks' which were actually seizures would also settle down. The GP never referred me to anyone else."
During the pandemic, she struggled further as she was never offered a video or virtual appointment. Rachel said: "For a long time, the seizures were described as 'a classic case of anxiety attacks' due to a mental and nervous breakdown…that I had suffered three years after starting with the seizures.
"It was only when I spoke to a different GP that she was concerned and sent me to A&E. This was after four and a half years of seizures.
"I was diagnosed in December 2021 with epilepsy and frontal lobe cavernoma. I was absolutely devastated. I couldn't see any future with such a lifelong diagnosis.
"I felt angry that this had happened to me, I felt desperately sad. I felt guilty, that I had failed my family, that I wasn't the woman that my husband had married and that neither of us had signed up to this. I was worried that life would never be the same and that my son deserved more than me as his Mama.
"I was angry that this could have been diagnosed a long time ago and that by now I would have accepted and come to terms with it. I worried about finances, too. I had recently lost my job due to ill health and then I knew I’d have to surrender my driving licence.
"I knew it would really difficult for my husband to stay in the same job role. I worried about having to rely on other people to do things for me, things that I once seemingly took for granted.
"I had heard of epilepsy, but it turns out I knew very little. I had a preconception that all seizures were physical and that it was always caused by flashing lights. When I was diagnosed, I realised that flashing lights affect a minority and that the term ‘invisible disabilities’ now applies to me.
"I have absence seizures. I get an aura of a rising in my stomach, almost like I'm on a fairground ride. It’s a rising burning sensation from my stomach to my chest.
"I usually have time to say 'I'm having a feeling' until I go into the seizure. I have always called them 'feelings' because for over four years I didn't know what they were and how to describe them to my young son.
"It was important for him to be aware that they were happening, and calling them feelings didn't sound as scary for him. Once the aura is over, I quickly go into a zoned-out state.
"I am completely paralysed and unable to move any part of my body, including blinking. I have been told I have a certain vacant look. I stare into space and I'm not able to communicate.
"Everything around me is intensified, noises sound unbearably loud, voices sound distorted, I become really cold with goosebumps. This lasts for approximately 2 minutes, and then I become really hot, sweating and I'm wiped out and exhausted.
"The more I have the more tired I am. I can fall asleep suddenly and usually by the time it passes I then have another one quickly after.
"We have all been shocked. I have felt supported. I have found that with a diagnosis, people have been a lot more accepting of what have turned out to be seizures.
"No-one knows what another person is going through, but people have a lot of love and support to give. Since diagnosis, it feels amazing to have people listen, believe and understand what I have been feeling for so long.
"The worries and lack of understanding on my part impacted my mental health. I am currently under a neurologist and a neurosurgeon for the cavernoma.
Now she hasn't had a seizure since January 17, after starting medication, and says she is "starting to remember the person I was before this started and I see light at the end of tunnel”.
As many as 31,000 people in the UK are facing an epilepsy diagnosis this year, but Epilepsy Action warns many are struggling to get the information they need. Tom Beddow, advice and information services manager at Epilepsy Action, said: “The impact of epilepsy is huge, and goes way beyond initial diagnosis.
"Even before the pandemic hit, neurology services were one of the least funded, most stretched areas of the NHS. Now, two years on, we have a surge in people seeking our help, fresh from being diagnosed over the phone, sometimes in as little as 10 minutes. Many are being left to their own devices, struggling to find support, not knowing their rights or their risks."
For support visit epilepsy.org.uk or by calling the Epilepsy Action helpline on freephone 0808 800 5050.
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