How Epilepsy Saved My Life with Jessie Mae Lambert

In this episode, Jessie opens up about her journey from being misdiagnosed with anxiety to finally discovering she had epilepsy—and how an MRI for her seizures revealed something even more shocking: a brain tumor. Jessie shares how persistence, self-advocacy, and support from others helped her navigate this life-changing diagnosis and find the right treatment. Through an honest and inspiring conversation, we explore the intersection of mental health, epilepsy, and the power of community to build resilience. Don’t miss this compelling story about finding strength in the face of medical challenges.

Jessie (00:00.254)

my main message is to trust your body, like you know your body more than anything and if you're not happy with what your GP is telling you, be annoying, ring them every day. It's important, we need to be taken seriously and we're not being taken seriously at the minute and it's very frustrating when you know something's wrong but no one's doing anything to help.

Jordan (00:29.346)

Welcome to Carpe Season, a podcast by Young Adults with Epilepsy for Young Adults with Epilepsy. Young Adults with Epilepsy is a nonprofit that provides completely free peer support groups and monthly workshops to young adults with epilepsy. If you can consider donating down below to help keep our lights on and support young adults around the globe. Today I'm talking to Jesse, an epilepsy advocate on TikTok. How are you today, Jesse?

good I'm very excited to talk to you today it's very very exciting that's all

Okay, getting right into it, what has been your epilepsy journey?

God, it's been kind of ongoing for well over a year now. So just randomly one day I had what at the time I called an episode because obviously I had no idea what was happening to me. Turned out it was a seizure and this was October of last year. So it seems a lifetime ago and I was having like maybe 10 a day. Like it was horrendous. Obviously not knowing what it is. That's the scary part. Like you're thinking what?

what am I going through? Like what is happening to me? And it was the first one was a night after a house party. So I just thought like, is it my hangover? Am I just having like a funny turn? But obviously it wasn't. So then I kind of just sat on it. I don't know why I just sat on it. And I was like, they might just go. Am I just because I'm exhausted or like overworked at work? I don't know. And then it was because I had one in front of my mum and dad. So I was having these before.

Jessie (02:06.286)

in the middle of the night when I'm working from home on my own, like that kind of thing. So no one was like experiencing me having them. So when I did have them in front of people, my mom was like, Jess, that's not quite right. I think you're having seizures. So then she like, you know, moms being moms was like, we're booking you an emergency appointment. So the next day had an appointment. There's a bit of an ordeal with my GP. He was just like, at first he diagnosed me with anxiety, which

you know, probably does go well hand in hand with it, but I've always had anxiety, but it's just something that you kind of crack on with, isn't it? And I just was like, yeah, maybe it's just like got a bit worse, whatever. And then there's only when mum was like, it's not that you need to go back. I went back and he was like, you need to get your story straight, giving me proper sass. And I was like, sorry, but you're the one that in the first place told me that it was panic attacks. Like now I'm telling you that I don't think it is.

So it took ages battling with them to be like, take me seriously, which is why I got into doing the TikToks because from speaking with how many girls I've got in touch with me that no one's getting taken seriously in this, but that's another topic that we'll get into, I'm sure. So then I finally get an appointment for an EEG scan, which, you know, the wires to the heads, you know about that,

and an MRI scan. So I had the wires first and that picked up minor frequency but then it was the MRI that showed that there was a mass there that turned out to be a tumor. Which obviously you never think that that would happen to you. Like a complete like turn of events where I was just like surely not, surely not, this is not real. So then

I had to then make the decision of how we wanted to deal with this if I wanted to have surgery to remove it, if I wanted to live with it, all that kind of thing. But with the epilepsy, it was just I was put straight away onto meds that did reduce them, didn't completely turn them off. I think it was because it was kind of up until I had the surgery that that's when it was more likely that they would stop, whether it was the fact that the tumor was pressing on a part of the brain that triggered them.

Jessie (04:25.27)

that caused it which thank god otherwise I would never have known I'd have this tumour so as much of a nuisance epilepsy is it did somewhat save my life, you know what mean? it's like my mum, my mum bless her, she's always like we'll be like out having drinks and she goes cheers to epilepsy with a glass and I'm like okay mum if that made you feel better but it's quite a nice way to look at it like it's the best of a bad situation if that makes sense

So then I have the surgery, and now I had radiotherapy to deal with.

the remaining bit of my tumor and the radiotherapy. One of the biggest side effects was returning symptoms pre-surgery, which for me was epilepsy and my seizures. And I was having 20 seizures a day, like intense, but my seizures on your fit seizure, minor the focal seizures. So what's it TLE temporal lobe epilepsy. So like, know, your deja vu, your

if you feel like you're not on the planet, that kind of thing. It's horrible. I can't even to this day describe how they feel. And I was having 20 a day, so I reached out to my neurologist and was just like, please help me. I'm at breaking point. And he put me on some emergency medication that I can only take two weeks. And they've really helped. I think I've had four since being on that, which, know, compared to 20.

sign me up but yeah so I'm still figuring it out like I've no idea what's gonna happen or what it what do you know I mean I don't know I'm just going with the flow

Jordan (06:11.348)

Yeah, I feel that I have I've had epilepsy since I was eight months old. I really or yeah, and I'm 22. And they didn't figure out my medication until I was like 14. So good luck. It's a really long journey. but I felt there's so many things I'm thinking the amount of people that I have talked to that got diagnosed with anxiety is just crazy.

eight months old. Sorry.

Jessie (06:36.588)

Like when it was actually epilepsy.

Yeah.

feel like they just fob you off, like, I think it's just like an easy route for them to pin it on anxiety.

Yeah, it definitely is. I also just feel like, and it's so hard because if you have something like focal seizures, that's not what you see on TV or in movies. And so there's really no like visual for that or representation. And so it is really hard to be like, this is what I think is happening to me.

Yes, they don't believe you. think like, they were like, do you take drugs? And I was like, no, I was like, you can't just blame, just because I'm young and I go out and I like, I like a glass of wine, who doesn't? Like you can't just blame what I'm experiencing, it does kind of sound, you know, conspicuous. I was like, but as you said, yeah, in the media, you, and when I tell my friends I've been diagnosed with epilepsy, they all assume that it's, know, you, what is the name for that? The one's on the fit, so.

Jordan (07:34.558)

Grandmall. Grandmall? Mm-hmm. Yeah.

Who?

Grandma? Really? Oh, grandma seizures? Is that- oh, okay, well, they all assumed that they were those kind of seizures. And I was like, no, I can't describe what my knocks. I've only just now, recently actually been told that they're called focal seizures. After, what, year? So yeah, it's been a journey.

Yeah, I totally understand that. feel like because when I was a child, I only had focal seizures. Okay. As unfortunately, as I got older, I started having like the typical grand mal seizures. But that was because my neurologist took me off of my medication. That's a story for not this podcast. But I feel like because when I was a kid, I was having just the focal seizures and I was misdiagnosed like multiple times like

I was misdiagnosed with having like many strokes and then cerebral palsy and all these other things that just weren't epilepsy. And so I feel like, especially with focal seizures that don't have like, don't necessarily look like epilepsy to people. feel like that's really a difficult one because people aren't really paying attention to that.

Jessie (08:54.298)

I have them in the office, like, I've only just started going back to work. My first day was last week and I was filming a TikTok with my director and I was like, I was holding the camera and I was like, just bear with me, I'm having a seizure. Like, I can talk through them now, like, I've become that, like, well practiced at them that, like, I was in Morrison's and I was looking for cheese and I was still looking for cheese whilst having my seizure, do you know what mean? Like, it was, I've just become so...

accustomed to like surviving through them that like they don't affect obviously they're still horrible but if I look at that how I deal with them now in comparison to the first three months of having them without knowing what they were completely different I would be like screaming in the house like I hallucinated like all that kind of thing and now I'm just kind of like just had a seizure so cash

Yeah, I totally understand that. How did you come to the decision to get surgery and do radiotherapy? Was it an easy decision or a hard decision?

So was really hard. obviously when you hear the news that you've got a brain tumour, it's kind of like, I want it out. Like, I'd rather not. I'd obviously rather not. Well, like I had it listed in front of me, like the risks, like the risk of strokes. And typically when you think you've got enough bad luck, the placement of my tumour was over some of my main arteries. So the surgeon was very upfront with me. He's incredible. He was like, straight away, I can guarantee that I will not go.

get the full 100 % because of the placement. So I was like, that's fine. But he was like, so I'm going to take no risks. Because if I do take a risk and hit a blood vessel or an artery, you might have a stroke where you could wake up immobile, nonverbal. And I was like, I don't want that, obviously. Like, we don't know how long my tumor's been there either. So it could have been all my life there. And I was like, well, I've made it this far. so they basically said you can have

Jessie (10:55.598)

surgery, we can leave it and monitor it or we can take a biopsy. But with the biopsy, they still have to put me to sleep. So obviously they're taking a part of my brain essentially. So I was like, fuck it, once you're in there, you might as well debulk as much as you can. So that's why I went for this surgery. And then the radiotherapy is more of a preventative cause. it's more of like my tumors are grade two at the mid

touch wood, grade two, but it cannot scale. But with radiotherapy, it's more of a like preventative cause where it can prevent the tumor itself from developing into a grade three or the cells around it. Like turning bad. So I was just like, whatever I can do to minimize this situation getting even worse for me. I'm wanting to do it, but it was very much like, it's up to you. Like I can't like appreciate and thank the Nottingham team, like incredible.

But the worst part of radiotherapy was the return of my seizures because after my surgery, I went like three months seizure free and I was like, oh my God, they've taken a part of the brain tumor that was pressing on my epilepsy button and I was like, I'm cured. But then obviously she's not cured. She still has epilepsy. yeah, but they've slowed down. So that's where right now and now we're at the stage now where we're just monitoring the tumor.

every four months to make sure that it's behaving.

Yeah, I feel like having the epilepsy come back must be really hard, especially having that period of like, it's gone.

Jessie (12:32.558)

I can't imagine. know. It was so bad. I can remember I had plans with my friends and it was Friday and obviously they've all been to work, know, Friday feeling obviously I've not been at work so I was just like whatever. But I just was in bed all day just waiting for seizures. I was like, this is when I had to email my neurologist because I am crying waiting for them to happen. was like my existence at the minute is waiting for these seizures.

And I don't want to exist like this. I deserve to able to go out with my friends. I need help. The effect that it has to your mental health, as you know.

it's like horrendous. But that is also another story.

Yeah, it's that feeling of like not being able to have that normal life, which is just, it feels so unfair. When you're young.

Yes.

Jessie (13:27.822)

I know, know, we're in our prime and like, I'm worried about, it sounds so stupid, but I say it in my TikToks, I'm embarrassed that I have, if I have one in, say The Wild, like, you know, not my home and like, and people don't know how to react or if I freak out or like, I went for a run, my first run after my surgery and I was like, this is a milestone for me, like, I feel incredible. And then I had a seizure on my own.

the street which I've never had one on my own in public before and I was walking through it was fine but I had to get my dad to come and pick me up because was scared. 27 year old like dad pick me up but I was like this is like not what I should be worrying about I've got obviously bigger problems but it does have that effect as well that you don't know how you're gonna react in Morrisons or or like at work in the office or on a run it's

or if you're crossing the road like yeah crazy

Yeah, and it's just the because there's so many other factors with the people around you and like what they're thinking and what they would do in that situation I just feel like that's one of the reasons I'm always like so thankful that luckily I don't really have seizures in public because I'm like I just can't imagine how the people around me are gonna like react to me and especially in America when like an ambulance is like $8,000 it's just like so yeah

I didn't think of that. Yeah, like would you have to pay for that? I'm like, yeah, will look after myself. Thank you. I'm sorry that you have to think of those things.

Jordan (15:07.168)

Exactly.

Jordan (15:11.956)

Yeah, it's a fun healthcare system here. I'm wondering how social media has impacted your journey and what you hope to accomplish by sharing your story. If you want to talk about that a little bit, I know you have had an impact on other people, so I just want to hear about that.

Aww.

Jessie (15:33.39)

Sure, so it all started like I never I work in marketing so like I've always been doing tik-toks but for a business or whatever so I've always been Immersed in like tik-tok and that kind of thing But then it was whilst I was waiting for my MRI results and my EEG results I saw this girl Her name's Lucy. I found her last night on my tik-tok and I messaged her but I'll tell you about that in minute I saw her tik-tok and she explained

everything that I was going through and I had not seen anything or by anyone explain these focal seizures and she was like I've had deja vu, have like the strain sensation, like the smells, the tastes and I was like I sent it to my mum and I was like mum this is what I'm having and obviously mum's being mum she was like Jess don't think the worst like we don't know what it is yet obviously trying to settle me down but then obviously after I was diagnosed with it and it was exactly the same

what she was diagnosed with. was like I need to, I need to do something because if I had a resource when I was going through these things because I've kind of gone through it, I only shared my stories after my surgery. So I went through the whole, so basically from like April to when I was diagnosed to August which was surgery, just kind of like going through it on my own and only my close friends and family knew.

And then was only after surgery that I started talking about it because I didn't want to jinx the surgery because the surgery could have gone terribly wrong. Thankfully it didn't. But I just thought if I had somebody to ask questions to, to reach out to, to ask advice, then I would have done anything for that. So that was my goal and I've had sadly like almost 10 girls.

reach out. They're all girls which is unusual. Whether it's the algorithm, I don't know, but all young girls just be asking questions thinking they're going to be the same thing. It's so sad. I actually met up with one girl because she was local to me, went for a coffee and she basically was just asking me like how did you come to the decision of surgery because she's been faced with this question as well and it's a big decision to make. So I was like my god, I'm so glad that you've got

Jessie (17:56.054)

somebody that has been through it that can give you advice and pointers. And also, and also it was just more of an update thing for like my friends and family is like, your support system is what carries you through it. And sharing my updates on TikTok was just like an easier way that I felt that I could talk about it. I'm very emotional. So like speaking to my friends about it, just

Makes me cry, but I find it easier talking to a camera which sounds crazy because I've cried on TikTok and it's not it's not pretty I get doesn't look good. But like it's I find it easier to Open up I guess when somebody is not there being really kind and nice to you where I make you cry more if that makes sense

Yeah, I remember when I started working at Young Adults with Epilepsy, was for how many people have epilepsy? I had never met someone else with epilepsy and I had never really seen that representation and I feel like it's a really difficult thing to go through because there's not that many people that talk about it and because for me I had never talked about it because I found it very embarrassing to be like, this is kind of, I don't want to share this but here I am on a podcast.

All is my job.

But so yeah, I feel like there's so many things that social media has done for the epilepsy community and is helping people get diagnosed and having that support because it's kind of the place where you can really get other people that understand you. And so I feel like you sharing your story is so important because I can imagine someone scrolling through TikTok and being like, this girl knows what I'm going through and she understands and I'm not the only person that feels this way. And I just feel like that's so important.

Jessie (19:43.438)

It's the power of social media, like, it's all well and good, like, you know, little outfit pics every now and then, but like, on a deeper level, like, it is a community of people, like, it's incredible. Like, I had a girl that I followed on Instagram for years, she's followed me, and she DM'd me like, oh my god, like, I never knew you had epilepsy, I've got epilepsy, and I was like, I was like, what, like, what are the chances at? I would never have known because she-

doesn't speak about it on the socials and stuff which is fine but she's had it since she was four and I was like I would never have known that like that so many people like go through and I was like let's be friends that's fun, throw on my buttons

Exactly. It gives you that level of knowing other people, which I just it's just so crazy to me that one in 26 people in the world have epilepsy and most people that epilepsy are like, I don't know anyone else in real life with epilepsy, which is just because they don't have that representation and feel comfortable to share it. But I feel like the people on social media sharing their stories or making that more normalized, which I just think is such a good thing, especially for young adults, because

Like seeing someone like you say, look, I go for drinks with my friends, but I have epilepsy, like really shows people that you can like live that full life that you want to live when you're a young adult. And I think that's so important.

Yeah, definitely I agree.

Jordan (21:11.928)

wondering how you coped with not being able to work. Like if you came up with new hobbies, kind of how you passed the time, what was that like for you?

So I was signed off work pretty much, well, it was the same day that I was diagnosed with both epilepsy and the brain tumour. So that was April and my first day back at work was last week. So we're in November, like I've been off a while and it was just at first because I was waiting for my surgery day. was going through the emotions of being diagnosed with a brain tumour. I had guilt. was like, people are thinking that I'm off.

enjoying myself and living my best life like because I I use social media and I'd put like me and my mum going out for a coffee on my story and like to me that was like a highlight of my week and I used to get like the odd DM like should you be posting that when you're off work and I'm like this is like a big thing for me to be out of my bed like I don't post me having a mental breakdown in my bedroom on social media like you don't see 90 %

of my life. So I think adjusting to not feeling guilty, which sounds outrageous considering what I've been through, but like there is that sense of guilt like I'm not at work, my bosses have been absolutely incredible, like they've supported me more than I could have ever imagined and expected, like incredible. Even now like, so I'm doing a phase return to like readjust and they're like just do as much

or as little as you need, like it's up to you. And just to have that as a weight lifted means more than you can imagine. But in terms of like what I did, I just, because I can't even exercise. So obviously when I'd recovered from brain surgery, I was resting, but I started painting by numbers, which my friends are going to watch this and just be like, bloody hell, not this again. But I just love it. I just find it so therapeutic at night.

Jessie (23:21.646)

No, just to zone out, not think about anything. And obviously I've had brain surgery. makes you think, is everything okay up there? Like, can I still like have a steady hand? Am I still... What is the word? what is the word? Like, I don't know what the word is, but like cognitively?

Is that the word? you're just nodding. I think so. Like, can I still have a steady hand? Can I still like do things precisely? And that to me, doing my paint my numbers is me to be like, I can't like my brain is still okay. And I enjoy it. Like it's, it takes it distracts me, it takes my mind off things. That's what I've been doing walking now that I can.

do things again, seeing friends that my friends are stupidly supportive and have been there for me beyond. And also, my friend Lauren, she has a friend called Phoebe that I'd not met until Saturday, just gone. And she's like to her friend, she said to Lauren, I'm running three marathons. Can I do it for Jess?

I was like, I've never met this girl. She wants to run like three marathons for brain tumor research. So we went out on Saturday and I'm going to Italy with her to see her last race on Friday. So I'm going on a holiday. I didn't think I'd be going on a holiday this year because of like everything, but like how incredible to go and support her, support me.

That's so I cannot imagine that's so sweet. because I know running was something that you did before how was kind of not being able to do that and now it seems like you're steadily getting back into that.

Jessie (25:26.118)

dipping my toe. It's hard because I was I was never a runner and then whilst I was going through all of this I started doing like the park run which in England is like on a Saturday runners meet up in a park and run 5k. It's very wholesome we all go for a coffee afterwards it's cute and I was doing that getting into that and doing my 5ks and then this happened and then I was just like it's throwing me and then

I did my first 5k after my surgery and that's when I had my first seizure back. So I've said all week, I was like, I'm going to do a run this week, but I'm scared. I think I'm scared that I'm going to have a seizure. I spoke to my oncologist and I was like, what if my run have triggered my seizures? was like, no Jess, it was the radiotherapy. So I think in a couple of weeks, maybe once the radio side effects have calmed down, I'm going to get back into running because it was like an achievement for me.

And like you've written it and you're struggling and you're thinking if I can beat brain surgery, like I can run 5k. You know, I mean, that's what gets me like through it. I'm like, if I can do that, I can do this.

Yeah, the just feeling of, can do hard things. I know I can do it now.

Yeah, I've done it. Yeah.

Jordan (26:44.386)

I'm wondering what advice you have for other people, whether that's people going through trying to get a diagnosis or maybe trying to deal with the decision of surgery, those kind of things.

So trying to get a diagnosis, like my main message is to trust your body. Like, you know your body more than anything. And if you're not happy with what your GP is telling you, be annoying, ring them every day, go back, demand second opinions. If you get past that stage and you get to the hospital and it's like, I was supposed to have a 12 month waiting list, but thank God got a cancellation. But I was ringing every day. Like was on first.

term, first name term basis, is that the phrase? First name basis with the receptionists at the the walls and I was like, Nikki, is there a cancellation? She's like, no Jess. And then finally she rang me back and was like, Jessie, like there's a cancellation. I was like, oh my God. And that's how I got fast tracked because I was annoying. Like I harass these poor receptionists every day, but it's got me

year ahead of where I could have been, do you know what mean? So my message is, your body, be annoying, harass the receptionist, which I bet receptionist might hear something else for fuck's sake. But I'm sorry, but like, it's important. We need to be taken seriously, and we're not being taken seriously at the minute. And it's very frustrating when you know something's wrong, but no one's doing anything to help.

I feel like that's such a hard... I hate advocating for myself and that's something that I've been learning now being like 24 and I really kind of have to do it for myself now that I'm not... I can't just call my mom every time I'm like, can you call your doctor?

Jessie (28:39.106)

Which is like, put me in a corner?

I know like literally still a year ago I was like, mom, can you tell them to stop being mean to me? But I feel like it's just like something that you have to learn. And I feel like, yeah, that advice is so good because it is like just you're the only person in your body. So you really truly know how you're feeling.

Especially when you can't describe it to anyone else, like no one could understand what I was going through and I was like, my mum couldn't get across my anger so I was like, I have to be the one that has to step up and be like, give me an appointment.

Yeah. I'm wondering, thank you so much for talking to me today. If there's anything you want to plug, social media, etc.

just if you're wanting to relate or wanting to speak to someone that I'm always, you know, happy to share advice, my experiences, probably my TikTok, which is just jessymelanbert. And on there, you'll find also the GoFundMe page, which is Phoebe's contribution for the brain, tumor research. So

Jessie (29:49.646)

you know, if you want to read more about my experience on there, what she's doing, that's all on there too. But yeah, just, I'm always happy. That's kind of why I've started doing this is to be there for people going through it, because I knew that I would have jumped at the chance if I was watching this and I was relating to me now, I'd be like, give me her number now. But yeah, no, that is probably what I would say.

Well, thank you so much for talking to me today. I really appreciate it.

Well, thank you for having me on. It's been a pleasure.

Thank you so much for watching this episode of the podcast. As a reminder, we have all the links in our descriptions to sign up for our peer support groups, our monthly workshops, and any other opportunities and events we have.