The first time it happened was in July. As I sat at my desk and sifted through my overflowing inbox, my mind fell into déjà vu. Déjà vu is tense even at its best, but this lasted for a long time. consume everything. While I spent hours each day struggling to figure out why my desk was now an agent of terror, I felt like I was recalling a half-forgotten dream. Ice-like sensation in the lungs and stomach: characteristic of a panic attack.
The initial fear and panic subsided as soon as we arrived. But during one day that summer, I went through another 30 episodes. An emergency GP appointment followed, and I left with a packet of diazepam and a diagnosis: Generalized Anxiety Disorder.
After my diagnosis, I tried everything in the book to deal with my new “panic attacks.” Meditation, exercise, eating healthy, getting enough sleep, exercising regularly and introducing yourself to Cognitive Behavioral Therapy (CBT) by the NHS.
I was less stressed, but I still had déjà vu and panic attacks. Only when I came across an online epilepsy forum discussing my exact symptoms did I begin to realize that my “anxiety” could be something else entirely.
Armed with this information, I returned to my primary care physician and requested a referral to neurology. In December, sitting in a hard-backed hospital chair, facing a neurologist, I found myself digesting my new reality. It’s a serious case,” my doctor assured me, and stopped me from doing activities deemed too risky, such as driving, bathing, and sitting in a chair, that I was no longer able to do.
I almost laughed at how unreal it was. But under the shock of a life-changing diagnosis, flowers of relief were blooming. This was the culmination of her six months of embarrassing symptoms and misdiagnoses. That was the definitive answer.
Ever since the seizures began, I felt like something inexplicable was controlling my brain cells. One heartbeat had turned into a less reliable pulse.
The symptoms I was experiencing were focal cognitive seizures, a disruption of brain signals that cause uncontrolled sensations, movements, and emotions. precedes convulsive unconsciousness, which represents many. But it didn’t work for me.
About 600,000 people in the UK have epilepsy, and the NHS says it usually affects children and people over the age of 60, but it can occur at any age.
Genes are thought to be involved (1 in 3 people have epilepsy in their family), but it can also be caused by brain damage such as stroke, infections, tumors, or head trauma. Temporal lobe epilepsy, which I have, can be managed with medication for 2/3 of hers. For the rest, dietary changes and surgery may be options.
Epilepsy is a common disease, but many people like myself may not be diagnosed initially, especially if they are experiencing subtle symptoms such as migraine headaches, irregular heartbeats, dizziness and fainting.
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Obtaining a formal diagnosis can be difficult because of the lack of widespread knowledge about the myriad forms of epilepsy. For example, only 3 of her 100 people with epilepsy have photosensitive epilepsy, but the most commonly known trigger is flashing lights.
Problems in securing a diagnosis can also arise at the primary care level. “Under-recognition and under-diagnosis of epilepsy is common in people who have only symptoms due to focal epilepsy,” says Andy, his director of medicine at Walton His Center, the UK’s only professional body for neuroscience. Nicolson explains.
In these forms of epilepsy involving the temporal lobe, seizures occur in one hemisphere of the brain and can be confused with panic attacks or migraines. As a result, “it’s not uncommon for the diagnosis to be delayed by years,” explains Nicholson.
In the Reddit epilepsy thread, people from all over the world share their experiences of being misdiagnosed. These range from serious mental health conditions to detention in a psychiatric ward. Many articles deal with the misdiagnosis of generalized anxiety disorder, with some stories of delayed diagnosis up to 20 years.
Gus Baker, a retired licensed consultant clinical neuropsychologist, executive director of the International Epilepsy Agency, and patron of The Brain Charity, says that the potential to reach a rapid diagnosis of epilepsy may also be hampered by location. says that there is “Most of his GPs are well-advised and should have a pretty good understanding of epilepsy,” he says. However, “there is a zip code lottery. Where you live and who you meet affects whether you get an accurate diagnosis.”
So if your primary care doctor has a good relationship with the local neurology service or if you live within an NHS trust with an epilepsy centre, referrals may be expedited. Otherwise, you may face a lack of understanding and a much longer wait to be diagnosed. Her 6 months, which took my case, was much shorter than many others have experienced.
Sarah Barker Nunn, 31, from Romford, Essex, took three years to be diagnosed with juvenile myoclonic epilepsy, which causes uncontrolled seizures and cramps in the limbs.
Her first episode occurred at the age of 14, followed by tonic-clonic seizures. Her doctor’s initial diagnosis was “strange,” she says. She “was told that it was because her eyes were getting headaches from wearing too much mascara.” After her migraine diagnosis was made, she was diagnosed with chronic fatigue and generalized anxiety disorder. Diagnosed.
This experience had a great impact on her life. “I was tired and had such a hard time at school,” she explained, with the exhaustion caused by her condition causing her to drop three of her quarters on the GCSE. Finally, at the age of 17, she received a definitive diagnosis of epilepsy.
Barker-Nunn is frustrated with the length of time the treatment took and the misdiagnosis she received along the way. “I am very angry with the NHS and the school system because they don’t believe me,” she says. She is keen to raise her awareness regarding her misdiagnosis and is grateful for the support of her neurologist and epilepsy nurse.
What I have learned from my own experience is that listening to your body and trusting what it says can be an important step in an accurate medical diagnosis. Baker agrees and recommends the Epilepsy Action helpline for people concerned about possible epilepsy to find support and guidance on the types of questions to ask their GP.
Being able to confidently claim a neurology appointment has changed my life. The drug lamotrigine manages my epilepsy, but thinking about the alternatives is immense: the suffering of a seizure, or the risk I pose to myself and others if I can still drive. is not blaming the healthcare system for my misdiagnosis – I am just relieved to have found answers, support, and the prospect of living a seizure-free life.
