{"id":1039,"date":"2025-03-24T14:03:05","date_gmt":"2025-03-24T15:03:05","guid":{"rendered":"http:\/\/curiousdrive.com\/?p=1039"},"modified":"2025-03-26T21:34:26","modified_gmt":"2025-03-26T21:34:26","slug":"i-got-my-diagnosis-i-didnt-realise-id-been-experiencing-warning-signs","status":"publish","type":"post","link":"http:\/\/curiousdrive.com\/index.php\/2025\/03\/24\/i-got-my-diagnosis-i-didnt-realise-id-been-experiencing-warning-signs\/","title":{"rendered":"I got my diagnosis \u2013 I didn\u2019t realise I\u2019d been experiencing warning signs"},"content":{"rendered":"
\n
\n\t\t\"Jake\t<\/div>
Somebody saw my legs go from underneath the changing room curtain (Picture: Aemen Sukkar Jiksaw)<\/figcaption><\/figure>\n

I was at university when I had my first seizure.<\/p>\n

One day, I went clothes shopping on my own. I was trying on a pair of jeans in the changing rooms at Topman when I collapsed. <\/p>\n

Somebody saw my legs go from underneath the curtain. When I came round, there were around four faces staring at me; I remember thinking one of them was my school<\/a> PE teacher.<\/p>\n

This obviously didn\u2019t make any sense, but things don\u2019t tend to make sense in those first few minutes after a seizure<\/a>. It\u2019s total confusion.<\/p>\n

Somebody asked me if I knew what day it was. I was still completely disoriented, so I just said: \u2018Can\u2019t you ask someone else?\u2019.<\/p>\n

Gradually, I started to come around properly, and I realised what had happened. I knew it was probably epilepsy<\/a> \u2013 and I was right.<\/p>\n

My sister had always had epilepsy, so I\u2019d grown up around it; I knew the signs.<\/p>\n

I had no idea, though, that I\u2019d also grown up experiencing the early warning signs \u2013 known as an aura \u2013 of a seizure<\/a> myself.<\/p>\n

\n
\n\t\t\"Jake\t<\/div>
I wasn\u2019t diagnosed with epilepsy immediately (Picture: Aemen Sukkar Jiksaw)<\/figcaption><\/figure>\n

When I was younger, I\u2019d sometimes be lying in bed late at night, and I\u2019d notice that my bedroom door would either suddenly seem huge and very close to me; or it would seem very far away.<\/p>\n

I later learned this is known as \u2018Alice in Wonderland syndrome<\/a>\u2019, or AIWS \u2013 a brain-related condition that can disrupt how you perceive the world around you \u2013 and that, for me, it could have been an early sign of epilepsy.<\/p>\n

I wasn\u2019t diagnosed with epilepsy immediately \u2013 I had to have MRI scans. While I was waiting for my diagnosis, I had more seizures.<\/p>\n

It was always the same \u2013 beforehand, I\u2019d feel confused; afterwards, I\u2019d feel confused. After one seizure in public, people were crowding around me and everyone sounded like my best friend from primary school. I hadn\u2019t seen him since then, but that was all I could think about.<\/p>\n

\n
\n\t\t\"\"\t<\/div>
i was diagnosed with Juvenile Myoclonic Epilepsy (Picture: Aemen Sukkar Jiksaw)<\/figcaption><\/figure>\n

After a few weeks, I was diagnosed with Juvenile Myoclonic Epilepsy.<\/p>\n

People tend to assume that epileptic seizures are triggered by flashing lights<\/a>, but that\u2019s not the case for me. Mine are brought on from tiredness, fatigue and stress.<\/p>\n

My diagnosis wasn\u2019t a huge, scary thing for me, because I knew all about it from my sister\u2019s experience. But it was still an adjustment. I was no longer able to drive, in case I had a seizure; and I had to start taking medication. Thankfully, this started working immediately.<\/p>\n

\n

\n\t\t\t\tFor Sarah\t\t\t<\/h2>\n
\n
\n
\n\t\t\"\"\t<\/div>
Sarah Whiteley was a Metro columnist and much-loved member of the team (Picture: Sarah Whiteley)<\/figcaption><\/figure>\n<\/p>\n

Last year, on March 10, we lost our beloved colleague Sarah Whiteley. Sarah was a fantastic journalist; she was Metro<\/strong>\u2019s parenting columnist and a valued member of our first-person and opinion desk.<\/p>\n

Sarah died aged 39 from SUDEP – sudden unexpected death in epilepsy. It is thought that every year around 1,000 people die from causes related to epilepsy.<\/p>\n

With support from Sarah\u2019s family, Metro<\/strong> is fundraising for two very important charities: SUDEP Action<\/a> and Epilepsy Action<\/a>.<\/p>\n

From March 10 to March 26, which marks Purple Day (epilepsy awareness day), we will be running a series of features and first-person pieces, raising awareness of epilepsy and SUDEP.<\/p>\n

Sarah was so incredible at helping other people share their experiences; she was a born storyteller and we hope to do her proud with this series, while raising money in her memory.<\/p>\n<\/p><\/div>\n<\/p><\/div>\n

I\u2019ve been very lucky. I was on medication for around six years, and I\u2019m now medication-free. I\u2019m seizure-free, too, currently \u2013 I haven\u2019t had a tonic-clonic seizure since university.<\/p>\n

But I still have to be very, very careful.<\/p>\n

I\u2019m a comedian now \u2013 and, while I love what I do, it takes meticulous planning for me to make the most of my career while managing my condition.<\/p>\n

I tour a lot, which means an action-packed schedule. And, because my seizures can be triggered by tiredness, I need to make sure I get enough rest. It\u2019s just not worth the risk if I don\u2019t.<\/p>\n

Last year, especially, was very intense and busy. I was supporting Michael McIntyre <\/a>all round the world, and I was on my own tour.<\/p>\n

\n
\n\t\t\"Jake\t<\/div>
it takes meticulous planning for me to make the most of my career while managing my condition (Picture: Jake Lambert)<\/figcaption><\/figure>\n

There was one day when I was doing my tour in Scotland. After my show in Glasgow, I got on the sleeper train to London; got in a car, went straight to the airport and flew to Gibraltar to do three shows out there. Then, after the third show, I flew straight home that night.<\/p>\n

For the next couple of days, I noticed this feeling creeping in: My body was jerking a little, like when you\u2019re fast asleep and your leg suddenly twitches. I knew I needed to take some downtime, urgently \u2013 because this feeling was a warning. Like a tremor before an earthquake.<\/p>\n

When I was on tour with Michael, I\u2019d always have to go straight home after shows, or after a flight, and go to sleep.<\/p>\n

If I have an early start, I need to make sure I have nothing on the day before. It\u2019s just imperative that I get enough rest.<\/p>\n

\n

\n\t\t\t\tEpilepsy Action\t\t\t<\/h2>\n
\n

Epilepsy Action<\/a> supports the 630,000 people with epilepsy every day through their helpline, information, groups and services.<\/p>\n

The charity\u2019s ambition is to create a world without limits with people with epilepsy. By raising awareness of the condition, too often misunderstood and invisible. By changing the narrative around it, collaborating with healthcare professionals and campaigning for better services. By working to get everyone in the UK to know what epilepsy is and how they can support.<\/p>\n

You can donate to Epilepsy Action here<\/a>.<\/p>\n<\/p><\/div>\n<\/p><\/div>\n

At first, I didn\u2019t talk about epilepsy<\/a> in my shows. It never occurred to me that people might want to hear about it.<\/p>\n

But after Covid, I just decided to give it a go \u2013 and it really resonated with people. After my first show talking about epilepsy, a woman came up to me and said: \u2018My son\u2019s got epilepsy; I can\u2019t wait to tell him about you!\u2019.<\/p>\n

So many people since then have told me how much it\u2019s meant to them to hear me speaking about my condition.<\/p>\n

I\u2019ll tell stories about me \u2013 for example, I\u2019ll tell audiences how I had my first seizure during National Epileptic Week, which was fitting! \u2013 and stories about my sister. <\/strong>For example, when we were growing up, my two sisters shared a room. <\/p>\n

\n
\n\t\t\"Jake\t<\/div>
I really notice a shift in the audience when I start talking about epilepsy (Picture: Aemen Sukkar Jiksaw)<\/figcaption><\/figure>\n

One had epilepsy, and one had a form of OCD that meant she had to flick the lights on and off several times before entering or leaving a room. This resulted in flashing lights, which wasn\u2019t ideal for my other sister\u2019s epilepsy!<\/p>\n

I really notice a shift in the audience when I start talking about epilepsy. It\u2019s like the audience is thinking: \u2018OK, he\u2019s being honest with us now. We\u2019ve earned his trust.\u2019<\/p>\n

These days, I just want to raise awareness. I\u2019ve tried to get documentaries made about it, but I\u2019ve never had any luck.<\/p>\n

And we need to raise awareness, because people don\u2019t know enough about it. The assumption from people who don\u2019t have epilepsy is always: \u2018You can\u2019t stand flashing lights and you\u2019re going to fall to the floor\u2019. But actually, there are so many ways that epilepsy \u2013 and seizures \u2013 can manifest.<\/p>\n

\n

\n\t\t\t\tYoung Epilepsy\t\t\t<\/h2>\n
\n

Join a comedy workshop with Jake Lambert at Young Epilepsy here<\/a>.<\/p>\n

Open to anyone over 16 years old living with epilepsy or anyone who supports a young person living with epilepsy in the UK, this relaxed and friendly workshop offers an opportunity to learn the secrets of stand-up from Jake himself.<\/p>\n<\/p><\/div>\n<\/p><\/div>\n

My nephew has epilepsy, too \u2013 last year, he was having seizure after seizure but he couldn\u2019t get any medication because his pharmacy had run out. But no one seemed to be talking about this medication shortage.<\/p>\n

I feel like I\u2019m going mad, sometimes, trying to get the word out to people who don\u2019t seem to be interested in what epilepsy actually is and why we need to take it seriously.<\/p>\n

But I\u2019m doing my best. I\u2019m working with the charity Young Epilepsy, running a stand-up course to help young people with epilepsy to get into comedy; and I\u2019m working with Epilepsy Action, too, trying to raise awareness.<\/p>\n

And I\u2019ll continue talking about epilepsy \u2013 in my shows, and to anyone who\u2019ll listen. When I did Live At The Apollo in 2023, the promoter asked if I could do my \u2018epilepsy stuff\u2019 in the show.<\/p>\n

\u2018Of course,’ I said \u2013 because that\u2019s what I want. I want to help people, as best I can.<\/p>\n

As told to Izzie Price<\/em><\/p>\n

Do you have a story you\u2019d like to share? Get in touch by emailing jess.austin@metro.co.uk<\/a>.\u00a0<\/strong><\/p>\n

Share your views in the comments below.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"

Somebody saw my legs go from underneath the changing room curtain (Picture: Aemen Sukkar Jiksaw) I was at university when I had my first seizure. One day, I went clothes shopping on my own. I was trying on a pair of jeans in the changing rooms at Topman when I collapsed.  Somebody saw my legs […]<\/p>\n","protected":false},"author":1,"featured_media":1041,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[9],"tags":[],"_links":{"self":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/1039"}],"collection":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/comments?post=1039"}],"version-history":[{"count":3,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/1039\/revisions"}],"predecessor-version":[{"id":1047,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/1039\/revisions\/1047"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/media\/1041"}],"wp:attachment":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/media?parent=1039"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/categories?post=1039"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/tags?post=1039"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}