A mum thought she was going crazy after doctors repeatedly failed to diagnose her with epilepsy.
Rachel Wilson, a mum-of-one from St Helens, had to stop driving and leave her job when doctors misdiagnosed her with sinus problems, an allergy and then anxiety. Medical officials repeatedly said her symptoms were just anxiety - leaving Rachel fearing she was going 'crazy'.
Eventually, she issued a desperate plea on Facebook, asking friends and family for help identifying her symptoms. Incredibly, a chance conversation with a friend who saw her post led the mum to discover she had epilepsy.
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Speaking to the Mirror, she recalled the first time she suffered a seizure - while driving with her son Sonny.
She said: "It was completely out of the blue, I was driving to Manchester with my little boy in the car. Luckily, we were in traffic lights, and I just had this 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 before being sent for allergy testing. But when the pandemic struck - she struggled to access help, and her mental health nosedived.
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: "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."
Rachel 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.
Advice and information services manager at Epilepsy Action Tom Beddow 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."
To coincide with Purple Day on 26 March, the global awareness day for epilepsy, Epilepsy Action has released a video sharing the overwhelming panic and confusion that can follow an epilepsy diagnosis.
If you are looking for support, visit epilepsy.org.uk or by calling the Epilepsy Action helpline on freephone 0808 800 5050.
