{"id":2533,"date":"2025-05-03T13:00:00","date_gmt":"2025-05-03T13:00:00","guid":{"rendered":"http:\/\/curiousdrive.com\/?p=2533"},"modified":"2025-05-07T21:35:41","modified_gmt":"2025-05-07T21:35:41","slug":"i-didnt-know-why-i-was-uncontrollably-sobbing-then-came-the-diagnosis","status":"publish","type":"post","link":"http:\/\/curiousdrive.com\/index.php\/2025\/05\/03\/i-didnt-know-why-i-was-uncontrollably-sobbing-then-came-the-diagnosis\/","title":{"rendered":"I didn\u2019t know why I was uncontrollably sobbing \u2013 then came the diagnosis"},"content":{"rendered":"
\n
\n\t\t\"Lily\t<\/div>
It was actually a bit of a relief to get diagnosed with epilepsy (Picture: Lily Welsh)<\/figcaption><\/figure>\n

The first thing I noticed was a metallic taste in my mouth. <\/p>\n

I was 14 and this taste just came out of nowhere, and could last anywhere from a few hours to a few days.<\/p>\n

With no clue what it was, I put it down to it being that time of the month<\/a>. <\/p>\n

Then, in April 2021, my granddad passed away. It really impacted me and caused a lot of anxiety<\/a> to build up. <\/p>\n

Suddenly, the metallic taste was just one symptom of many that came on at once: I started noticing shock feelings, like when you get a jump scare, and a sense of deja-vu. <\/p>\n

I would notice it, then forget what triggered it less than a second later, all the time thinking: What have I just seen?<\/p>\n

\n
\n\t\t\"Lily\t<\/div>
The one phrase I came back to over and over again was: Don’t punish yourself (Picture: Lily Welsh)<\/figcaption><\/figure>\n

The crying started soon after. A favourite show or song tends to bring out a bit of emotion in all of us but whenever Demons by Imagine Dragons came on I would cry really, really deeply. <\/p>\n

My family would repeatedly ask me what was wrong but I could only ever tell them that I didn’t know.<\/p>\n

Eventually, they started to ignore it. Without any explanation for my weird symptoms, I acted as if nothing was happening.<\/p>\n

\n

\n\t\t\t\tMore stories from people with epilepsy \t\t\t<\/h2>\n
\n

Doctors said our daughter was doing fine, weeks later she was dead<\/a><\/p>\n

Mum’s epilepsy misdiagnosed and dismissed as ‘mental health problem’<\/a><\/p>\n

How to help someone during and after an epileptic seizure<\/a><\/p>\n

Having a seizure cost me \u00a35,000 and left me in debt <\/a><\/p>\n

A stranger dumped me in an underground car park<\/a><\/p>\n

I was put on stronger medication \u2013 side effects saw me punching a wall<\/a><\/p>\n

I got my diagnosis – I didn’t realise I’d been experiencing warning signs<\/a><\/p>\n

HR said I was only allowed to have 3 seizures a month<\/a><\/p>\n

My 8-year-old fundraised for charity – trolls tried to give him a seizure<\/a><\/p>\n<\/p><\/div>\n<\/p><\/div>\n

It wasn\u2019t until September 2021 when I was on holiday with my mum and sister that I had deja-vu, and a feeling like I was on a roller coaster with a wave rolling through my chest. The feelings were familiar by this point but I noticed they were going on and on.<\/p>\n

\n
\n\t\t\"Lily\t<\/div>
I’ve got this disability, but I can still do things like a normal person (Picture: Lily Welsh)<\/figcaption><\/figure>\n

When my hands and toes started tensing and tingling, I panicked. <\/p>\n

Mum came out, I sat down and then must have been unconscious \u2013 I remember waking up and being really confused as Mum told me I\u2019d had a seizure<\/a>.<\/p>\n

We drove to hospital and I had another 15 seizures along the way.<\/p>\n

It was actually a bit of a relief to get diagnosed with epilepsy<\/a>.<\/p>\n

After an MRI scan and an EEG \u2013 during which I had a seizure \u2013 I met my neurologist. She asked about shock feelings, deja-vu, the metallic taste, and mood swings, getting really angry or randomly crying. It was like she was explaining the past six months of my life. I finally understood.<\/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

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 now know I have focal seizures. They are largely controlled by medication but it took a long time to get my dose right. <\/p>\n

Being diagnosed with epilepsy at 15 meant I lost a lot of friends. They thought my condition meant I couldn\u2019t do anything anymore, and they were scared of what would happen if I had a seizure when we were out \u2013 so I just wasn’t invited. <\/p>\n

I understand it’s not an easy thing to process and yes, I’ve got this disability, but I can still do things like a normal person. <\/p>\n

One of the hardest things to deal with has been the mood swings. While my medication was being adjusted, I would get irritated really easily. It was like a devil hopped into my brain and took control of my body.<\/p>\n

I’d ruin things in my bedroom, or I\u2019d self-harm. Afterwards I\u2019d look back and think, what the hell has just happened?  <\/p>\n

\n
\n\t\t\"Lily\t<\/div>
My dad bought me a car for my birthday; looking at it without being able to touch it has really affected me (Picture: Lily Welsh)<\/figcaption><\/figure>\n

The one phrase I came back to over and over again was: Don’t punish yourself, because this is not me \u2013 these are not the sorts of things I do.<\/p>\n

I\u2019ve found that reading, doing jigsaws and playing games on my phone really help me when I\u2019m feeling anxious. My family are really supportive but they know when to give me space.<\/p>\n

Another challenge is being unable to drive. I had to stop learning after three lessons because I had a seizure, and for my type of seizures, UK law requires that you\u2019re 12 months seizure-free to drive. <\/p>\n

\n
\n\t\t\"Lily\t<\/div>
I want young people to know that it is possible to feel normal again (Picture: Lily Welsh)<\/figcaption><\/figure>\n

A lot of people I know can drive now; I see them driving past my window while I\u2019m isolated inside. My dad bought me a car for my birthday; looking at it without being able to touch it has really affected me. <\/p>\n

Today, I\u2019m at college studying health and social care. Having epilepsy has made me want to work with people with the same condition. <\/p>\n

I still suffer from a lot of social anxiety \u2013 I’ve become very shy and don\u2019t socialise or talk to people much because of the experiences of being excluded I\u2019ve had in the past. I don’t want to have to go through that again. <\/p>\n

\n
Comment now<\/title><span class=\"metro-comment-cta__text\">Have you or someone you know faced similar challenges after an epilepsy diagnosis?<\/span><\/span><a class=\"metro-comment-cta__button\" href=\"#metro-comments-container\">Comment Now<\/a><\/div>\n<\/section>\n<p>But I want young people to know that it is possible to feel normal again after an epilepsy diagnosis, to feel like you fit in instead of being the odd one out who’s got this problem. <\/p>\n<p>It takes time to be able to feel like \u2018you\u2019 again, but it\u2019s possible. You’ll get better, you\u2019ll find the things that help you to cope. <\/p>\n<p>It\u2019s the kind of motivation that I wish I\u2019d had. <\/p>\n<p><em>As told to Rosy Edwards<\/em><\/p>\n<p class=\"has-text-align-center\"><strong>Do you have a story you\u2019d like to share? Get in touch by emailing <a href=\"mailto:jess.austin@metro.co.uk\">jess.austin@metro.co.uk<\/a>.\u00a0<\/strong><\/p>\n<p class=\"has-text-align-center\"><strong>Share your views in the comments below.<\/strong><\/p>\n","protected":false},"excerpt":{"rendered":"<p>It was actually a bit of a relief to get diagnosed with epilepsy (Picture: Lily Welsh) The first thing I noticed was a metallic taste in my mouth.  I was 14 and this taste just came out of nowhere, and could last anywhere from a few hours to a few days. With no clue what […]<\/p>\n","protected":false},"author":1,"featured_media":2535,"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\/2533"}],"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=2533"}],"version-history":[{"count":3,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/2533\/revisions"}],"predecessor-version":[{"id":2541,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/posts\/2533\/revisions\/2541"}],"wp:featuredmedia":[{"embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/media\/2535"}],"wp:attachment":[{"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/media?parent=2533"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/categories?post=2533"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/curiousdrive.com\/index.php\/wp-json\/wp\/v2\/tags?post=2533"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}