Let's Talk About Brain Tumours
Join us as we talk to about all things brain tumours with those who have been diagnosed, their friends, parents, partners and children as well as with researchers, fundraisers and advocates. Find out how The Brain Tumour Charity is working to improve outcomes for those who are diagnosed with this unforgiving disease.
Please Note: We recognise that everyone's experience's are unique. Our guests are sharing their own personal experiences of diagnosis, treatment and care. These may differ from yours or those of your loved one.
Let's Talk About Brain Tumours
Episode 37 - Brain tumours and seizures
Three people: Jess, Reece and Kate, discuss the impact that seizures have on their lives.
From the first sign there is something wrong to the day-to-day challenges of managing their seizures, we talk about the different types of seizures that exist and how medication can help to get these under control.
You can find out more about brain tumours and seizures on our website here
If you would like to speak to a member of our support team you can call 0808 800 0004 or email support@thebraintumourcharity.org
Welcome to Let's Talk about brain tumours, the podcast where we'll be talking to people who have been affected by brain tumour diagnosis, either their own diagnosis or the diagnosis of a loved one. We'll also be sharing news and updates and brain tumour charity about what we're doing to have the harm and double survival. Welcome to the podcast, myself and Andy are joined by Rhys, Jess and Kate. And we're going to be talking about seizures, which we know is often the first time many people have that something is going on. So welcome to the podcast. And thank you all for joining us today and being prepared to talk about your experiences of seizures.
Andy:Hi, guys. Welcome to Jess, Kate and Reese. Hopefully you can talk a little bit first about your experiences with seizures, how they happened, how they started, what your diagnosis is, as well in terms of your brain tumour if you're okay talking with that. Jess did you want to go first and tell us a little bit about yourself?
Jess:Yeah, absolutely. So I was diagnosed with a brain tumour when I was 15. And it was there was no signs or anything really looking back there were signs. But what led to the actual diagnosis was one big seizure in the middle of the night. It was a full big seizure, completely unconscious, Mike on the floor, fell out of bed, banged my head on the wall concussed myself and peed the bed complete everything that was just out of my control happened. And then I woke up and it was a paramedic on my bed. And I was like what's going on. And then we ended up calling an ambulance go to hospital. And that led to the scans which led to the tumour, they didn't find out exactly what it was to my first surgery. And I've got what I had an anaplastic astrocytoma, grade three. And it was really big. It was easily the size of my fist and my right temporal lobe. It was huge. And they told me that this has probably been growing since I was really small. And I just had absolutely no idea it was there. It wasn't doing anything wrong. It's just growing. And then it reached a size, which was too big, pushed on things in my brain, and then that caused the seizure. That's how it led to that.
Andy:That was pretty scary at the time, because that was your first introduction to this world, I guess.
Jess:Yeah, it was. But it was weird because I had no idea what was going on. I just woke up from it. It's like I didn't experience a seizure, because I didn't see myself having it. I even feel like it was worse for my mom who saw it. Because I don't even know that I'm flopping around like a fish on the floor. And she's there watching me like choking on my own spit. So I think is a lot scarier for her. I just wake up and get put in a bed. Why does my head hurt?
Andy:Kate, you will just take us quickly through your your history.
Kate:I started having seizures in 2009 when I was 13. My mom took me to the doctors, and they passed it up as puberty. And then after about having over 250 She took me back in 2011 and demanded they found out why I was having them. And this discovered that I had a pile of cystic astrocytoma which was causing them but then last year when I had surgery, they found it was a totally different tumour. Now I said ganglia glioma, but apparently they're similar. I have simple partial and complex partial seizures. So I don't fall are convulse. I just go completely unaware. I say the word no and busy over and over again. So it's a bit weird.
Sarah:Every single time you have one. Do you say that those same words specific?
Kate:It's yeah. So well, I don't know. I'm saying this. Everything I do. Other people have told me I do. Like I've never had it videoed, so I've never seen it. And I was put on medication. Finally got seizure free in 2021. So it took me 10 years to find the right dose and medication. And
Andy:yeah, I asked how many did you say you have?
Kate:Well, I kept a diary. So I've got every seizure. I have it every month since about 2009 had about 250 before I was diagnosed, and I could show this to the doctor when we went and they still said it was nothing to worry about kind of
Sarah:crazy. Absolutely crazy.
Andy:Thanks for sharing that. Reese. Did you want to just take us through your history if you don't mind.
Reece:So I had seizure activity, I suppose towards the end of 2019 start of 2020 cos I had this god awful headaches.I was sick a few time and physically vomited I was was working for Flybe so the same release of cars and aircraft and I was doing stupid hours at work so migraines weren't a million miles away. So I was given some to a ttriptaline GP made no difference. So I went right okay referred me to neurology and then my mum he's a nurse she's convinced that no this and have you been seizure free since you realised you had seizure activity because of stumbling whilst i was walking so she gove me a specsavers appointment, and she said the optician came out, he had a face on him. went into a bay got on the telephone. said it was urgent but was not like super urgent so this is Friday as having appointments going to Toby on Monday. come Saturday. I woke up on the floor with the paramedics around me and was like what is going on? So they said you've collapsed on the floor of the toilet? We'll take you in if you want to go in but it's not much point because they'll tell you you've been referred to neurology so wait for that appointment. And then Monday came? Showed me my scans, all came bck negative showed a lump behind my eye causing hypodemia urgent head CT showed a central neurocytoma I was pretty unwell because I'd had hydrocephalus at Mass Effect. One and a half centimetre herniation so I take him down to Derriford back of an Ambulance at one in the morning and apparently the plan was Mr Richfield was meant to perfom my surgery and he wasn't available to the week and Monday I've been going to the toilet for a good like 45 minutes and person called Sophie next to me tried to find me then she got Mr so apparently start of August 2020 I had an absence seizure Hayden he found the floor picked off the floor in the toilet spoke to mum who's an ex nurse he said exclude the fact that he's your son. What is your professionall opinion on that? which I don't remember at all December 2020 had a full on She said his cognitive ability has deteriorate significantly and he managed to get my tumour out but I had a bleed so back in surgery 18 hours of it tonic clonic seizure I was put on verge of given propaval and putting me inpatient me at ICU because I wouldn't stop seizuring and then come mid August 2021 it's weird cos I don't remember per se but I remember leaning outside my bed and this is weird because I remember opening door I sppose at the time I got my little sister and a girl called Lucy to find m me she went to my file and she was like we seen Rhys in his room and she's like nah nah he's alright he's only playing I remember my bed being on the side on my arms at some weird angle and thinking oh god now I'm having a seizure pure on family and she went to my dad who's like Rhys is on the floor shaking and being really silly. We walked in found me on the floor Tonic colonic alled an ambulance, paramedic turned up one look at tme and said no give me a full blown ambulance I wouldn't stop seizuring apparently my mate called Dave he's an ambulance controller and he said he's really surprised they didn't send out an air ambulance for me because it's good half hour seizure and no matter how may drugs they gave me I wouldn't seizuring
Sarah:long time.
Reece:Yeah, taken to EB Torbay. Again, I had the subsequent seizures as a result. They debated proprohal taking me up to the intensive care unit. I was inside for about three days, give or take, so I was maxed out on kepra 1250 milligrammes twice a day on about this time last year, I had a seizure we'll I say a seizure um my pupils went really funny my hairs on end stood up I had palpitations, like really severe palpatation. It's really weird, like feeling. It's a more like de ja vu type feeling
Kate:from what you just described, Rhys about the hairs standing on end and palpitations. I described that as a simple partial seizure. So I count that as a seizure. So I have them once where I just feel like out of body like deja vu. I come in a complex, different, like parallel universe.
Reece:Yeah, as on its way to war type thing, you don't quite know what's going on as such.
Kate:You're still thinking, like, you still know where you are, but it's definitely not normal.
Jess:Deja vu That's the first thing I ever said feel like you're dreaming. But you know, you're not
Andy:yeah so when you say deja vu because my interpretation of deja vu is you. You're remembering something you think you've remembered before? Is it like that?
Jess:Yeah, it's like you've got every time you go into when it's like, you've got this thought in the back of your head that you're trying to like reach. And you can't and you know, it's not like a real thought. But it's still like forcing its way to you. And then when you're gone. It's like you can't remember the feeling. But then you come back into it again, you're like, Oh, it's another one of these and then you lose again when you come back round.
Kate:I always also get like Jemavu, which no one's ever heard of, which is like it's the Same place, but something looks different. But you can't tell what's different. Like my bedroom might look the same but slightly different.
Sarah:And is that when you're actually having the actual seizure itself,
Kate:that's when I'm still aware of and just feel weird. But the other ones, I'm going to have me over type of seizure, that complex partial, I'm totally unaware. I don't get a warning, I'm just
Sarah:what would be the difference if somebody who's looking at you seeing those two different types of seizures? What would it look like to somebody else?
Kate:The simple partial, just like now, I could carry on as we were, I just be feeling really weird. I might like, not answer. Well, I would answer a question, but I wouldn't, on purpose. Keep involved with the conversation, but I would be able to,
Jess:yeah, you could pretend that you're not having to carry on a conversation.
Kate:Yeah, make complex powerful ones, I'd be totally unaware. You could be doing anything. And I wouldn't know.
Sarah:We didn't look like you were like, fully present like you are now. And we would just be like waiting for you to answer maybe
Kate:no complex ones. I'd been saying no, and Dizzy over and over again. And they hold in your hand.
Andy:So is this something that triggers the seizure? It sounds like you get a bit of a warning, if different types of you're going to have them is it? Because I've heard others completely separate. Like with migraines, people sometimes say if they eat chocolate, or too much cheese, or they don't sleep enough, is there something you found in all your experiences of having the different types of seizures, something that triggers them that you can then help the child modify how you do things to avoid having them or having less often,
Jess:I think I'm still learning really, things, you pick it up over time. I think stress is a huge one for me. If I'm ever going through a really like a work, I find when it's really really busy, and you've got a billion things and you're getting stressed and like trying to keep track of things, sometimes there's too much going on, is that my brain just kicks out. And I need to stop. And that's when I let go in the corner hold on to a table or something. And I'll be conscious, and I'll be perfectly aware, but I'll be having one of the partial seizures.
Reece:I only get tonic colonic seizures. So you lose consciousness, you're on the floor shaking.
Sarah:And I think they're the kind that most people associate with seizures, isn't it? I think. And I think most people perhaps don't even realise sometimes that they're having the partial seizures or the focal seizures, they don't know, because there are different ways that there are different terms that people use for seizures, aren't there. What do you use Jesse for yours?
Jess:Well, I actually only recently found out what specific type mine is and it's called a temporal partial seizure. And for years when I've been trying to explain to people even whilst I'm having a seizure of what it feels like, I've just been sprouting out these random vague terms and trying to explain it. And I thought I must sound absolutely mad. And when I found out this definition for what a temporal seizure is, it had all of those vague words that I've been spouting out I was like, oh my god, I'm not crazy. Other people feel like this to
Andy:Oh that's good so if you'd known that at the start, that would have probably helped wouldn't it.
Jess:It was just words, therefore, I don't know how to explain this. And I've explained it exactly how everyone else is. Just amazing.
Reece:Because when I before I had my diagnosis, I had these like weird more type deja vu type things. And I don't remember them, but looking back on it, ya know, that was 100% seizure activity
Sarah:And when you've had a seizure when you've had one of these moments, we know we assume you've had one that's lasted a long time. But for you guys, what, how long do yours last? And what's it like when you come out of it?
Kate:Mine are like my complex partial ones. Other people have told me about three minutes it lasts so three minutes, I'm talking rubbish, making weird facial expressions, and then it looks like I've come out but then takes me about five minutes to actually be able to continue what I was doing. I'm almost said other people have tried to get me to carry on as normal. After I've stopped doing the weird things occur. I have to be told what I was doing. Were they and have a bit of time to come back.
Andy:And you Jess.
Jess:So mine last I'd say 30 seconds to a minute and generally if that I call them like bad seizures or like nothing seizures. The little ones like I can No I'm having I'm gonna start holding on a little seizure don't worry about it carry on talking to me. And I'll know it's happening but I can ignore it. It's no biggie. But then the bigger ones are when I actually have to stop a lot of the time if it is getting big and I know it gets like overlooked because you get a sense of like fear. If they get big overpower Trying to I'd ring someone I bring my dad or my boyfriend or somebody, and also just stay on the phone, because it's the fear of what if this does tip over into a proper seizure? It's just there so that I've got someone can calm itself down. And the next day, okay, I'm fine. Now it's gone. And that's about a minute and a half, two minutes.
Andy:Sorry, it's just not a major ones, you term it. Do you? I mean, for all of you do, then, if you've got the confidence, just carry on as you were. So you think, right, I've just had a seizure? am okay, I could carry on or does it? Does it mean you then have to go and lie down? Or does it trigger anything else in terms of headaches? Or is it just a question of why that's it's finished now. I'll move on.
Jess:Because I've kind of learned to do that. If it's a big one, I get really tired. And I come home at the end of the day, and I go to bed early. It's a little one. Generally, it's just take a second to breathe and carry on.
Reece:Because that's the thing with my seizures. I've noticed just after I get really, really tired, I want to be I'm just knackered
Andy:What about you Kate Do you can you sort of carry on after yours? Or do you need to sort of take yourself out for a longer period of time?
Kate:Yeah, I just carried on. cos it was such a long time before I was diagnosed. And no one really took me seriously. And we didn't know what it was. Like I was at school when mine started. My record was seven in a day when I was at school. And I just, I'd have it. That's like three minutes, I'd come around five minutes. And I'd like to stay in the classroom. No one would like the teachers knew and everyone office obviously knew, but cos. Well, yeah, it wasn't just taken really seriously. I don't know if that's because I didn't fall down or convulsed. And, like, it took me such a long time to get seizure control. But I think that was also my fault, because I just got on with it. I just
Sarah:Do you feel that because people's views of seizures are the tonic colonic? Do you think that when you have partial seizures, that people don't take them seriously, or they kind of expect you to carry on it? So therefore you just do.
Kate:I think people just don't know about them. So like, I wouldn't blame them. I just think well, if you say seizure to someone, they think you fall down so they get really worried. So I think it's just people just think that one type of seizure exists.
Andy:The sounds that there are quite a few different ones for people coming out this fairly new I mean like myself. I've got a brain tumour got lucky that I've never had a seizure. So I was probably falling into that camp as Sarah just described of thinking as a seizure not realising you get all different types of seizure and different scales of seizures is that is that right?
Jess:I didn't have my partial seizures until so I have my first main one. And then my second one was also an unconscious one, which I knew I was going into I sat with my mom when the end of the bed and I said mom catch me and I write down and I knew it was a workman hospital. But after those two, it was after my first shunt surgery that I started having the partial seizures. So whilst I had the tumour, they were causing the big unconscious seizures after that it was the brain damage that was caused the partial seizures after that.
Sarah:People don't think about that do they because they think it's the tumour that's causing the seizure. But actually, it's not always the tumour like you've just said, You've had your tumour removed, haven't you and it's now the side effect of the fact that you had a tumour and the damage that tumour has now caused. So presumably, they're going to be lifelong. They're just gonna be something you're gonna have to live with.
Jess:Yeah, I was just told I can't drive,
Kate:I had the simple partial ones before I started medication. And then they stopped soon as I started taking medication, but I had surgery last January. And I'm still not having complex partial ones. But I've started having a simple partial ones again. So that's kind of worrying,
Sarah:um, you opted to have surgery you didn't you because of the impact of the seizures because you haven't so many of them that that was the reason that you decided to have surgery in the first place.
Kate:Yes, I wanted to drive. And you have to be a year free of seizures to drive. So yeah, my tumour wasn't putting my life in danger. But
Sarah:it's quality of life at the end of day. It's a big factor for a lot of people, isn't it? I've known other people do what you did. Kate, you say that the seizures are ruining my life and they have a much bigger impact than just a bit of a funny turn.
Andy:Either of you being the one you've been told, actually what causes the seizure.
Reece:So I spoke to someone oncologists and she just said because I had brain surgery, you have epilepsy as a result.
Andy:Yeah.
Reece:So it's one of those things that althought I wasn't born with epilepsy because I had brain surgery I now have it has to be so unfortunately, it happens to some people and doesn't happen to others.
Andy:Okay. And I was curious, because maybe it's just me then because I was I had some Gamma Knife last year, and they said that the scar tissue afterwards might give a different pathway for electronic signals to the brain, which then might cause seizures. And I don't know if any of you that sort of Yeah, has been sat down and said, Write your actual reason of getting the seizures because of this, rather than sort of this the overall reason?
Reece:Because, I mean, my, my tumour has been debulked so there is a fair bit of scar tissue around the area. So I don't I see massive reason as to why ever seizures because mom said she's, um, it's like, it'd be your brain to rewiring itself.
Andy:That's interesting, because maybe it's just me being very old engineer, just finding out what actually does cause them. So yeah, there's different pathways for the so you're almost short circuits, the brain, if that makes sense. So that's why they're so different in different people and different extents. Because the brain is so complex, if you kind of short circuit part of it, it might have a different effect in terms of seizure.
Sarah:Seizures from a brain tumour are often very different to seizures from epilepsy in the sense that for a lot of people with epilepsy, there are certain triggers flashing lights, for example,
Reece:you know, the only thing I will say is they tend to happen at the the same time a day around give or take eight o'clock ish. which then I take my meds so
Jess:I can tell if I don't take my med.
Reece:Yeah.
Jess:Yeah, I know. The thing is, I feel amazing. Like, if I start to feel really upbeat, and I'm kinda feel great. Oh, yeah, it's because I haven't had my tablet.
Reece:Yeah. Because I pretty much like said, I'm pretty religious, like, give or take 5 or 10 minutes around eight o'clock. I'm good. I've been around eight o'clock.
Andy:And for those that are new to sort of seizures that might be listening to this podcast, are your lives reasonably good in terms of quality, because you're a medication that controls the seizures. I wouldn't say you forget about them, but they play a much less larger part in your life than they did before you were on the medication.
Jess:Now I sorted out medication, yes. But for years, I've been on medication. And it's not been right. Mainly, it's been my mood. I've just, I felt numbed. Like I didn't feel myself. And I could tell my emotions were blunted, I felt like I just didn't care. They were horrible. And so the past maybe a year or six months, I've been telling the doctor, I need to change I want to change. And so we figured out a new thing that's working for me. And actually, it's doing really well. It's the best I've got so far. So I think it's just a matter of getting your meds, right.
Sarah:I think that's really important, because I hear that quite quite a lot because you get things like keprra rage and things like that, that different types of medication. But one thing to always remember for anyone listening is that there are lots and lots and lots of different seizure medications that you can try. So if you are on a seizure medication that you're having really bad side effects, do talk to your medical team because they can change. They can give you combinations, they can give you different drugs, there isn't just one size fits all medication, you may have to change to three, four or five times to find either a type of medication that suits you, or a combination of different types of medication that can control your seizures
Reece:since I started Lamotrigine, well, as well as Kepra cos I have really bad kepra rage since that's been increased. Lamotrigine hadn't noticed I've been Yeah, I've been a far nicer person to be around
Sarah:Keppra rage is an actual thing.
Jess:It's horroble I hate it And another thing with their seizure meds, I had a conversation this year, last year, with my doctor about how your anti seizure meds could affect like, if you're for girls like to get pregnant, and stuff and how often we need to change our meds. And Keppra is one of the ones they try and get you off. Or they it's not dangerous, but they'd like rather you want on Keppra and you're on something else. So they were trying to lower the dose and they wouldn't tell me for years so that you're too young, you don't need to worry about this. And then last year, I just pushed in and said I want to know, tell me everything I need to know now. So they talked to me about everything. They told me what was going on explain how the meds would work. And so I thought well, as well as hating Keppra anyway. Why don't I just start coming down on it now and then I don't have to when I'm pregnant deal with the side effects of coming down.
Sarah:And also pregnancy. Yeah,
Jess:I know that's years ahead
Kate:Did you find like changing medication started more seizures because obviously you can't just go from full dose of one to full dose of another like did you have seizures? In the interim
Jess:I wouldn say I noticed everything massively different kind of, What dose are you on now because of it.
Kate:Because, I'd say like Keppra is like my main drug. I've been on it since the start. So I don't know, I just, I don't know how you could come off something without having to two grammes twice a day, which apparently is the maximum.
Jess:So you'd be a lot the bigger jump than me,
Kate:okay
Jess:Especially if you've been on it for a really long time, your body's gonna take a lot more to adjust to it. But it doesn't mean you can't do something like that. If you chose to. they'd help you
Andy:Can I ask, Jess when you say you spoke, who are you speaking to? Is it your GP? Or was it your neurosurgeon team at the hospital? Just for others who maybe
Jess:it was a bit of everyone really it was mostly my neurologist, because I just rang him up, and I thought, and he just doesn't need to do so.
Sarah:Just out of curiosity, I just wonder how many of you have an epilepsy nurse?
Jess:Yeah. Yeah. That's the guy I spoke to,
Kate:There's epilepsy nurses in Leeds
Reece:I have an epilepsy nurse that I touch base in maybe six months? Just to kind of make sure I'm kind of staying as is
Sarah:Do you,Kate, did you say?
Kate:Well, there's epilepsy nurses in Leeds, who I've run a few times, and they're helpful. They're like my first point of call of anyone I could ring, like, my own free will, without, I don't know, get in touch with the hospital and saying, Can you pass a message to Doctor whatever.
Sarah:Because I think that's important to know as well, that there are an epilepsy team. Because getting hold of your neurologists, it's almost impossible sometimes, but having that point, when, when your biggest issue tends to be your seizures, once you've got to this stage, that having a direct route to somebody, because if some somehow it changes, your medication is not holding you anymore, the dose you're on was finding you're starting to get an increase of seizures or whatever, then being able to talk that through with your epilepsy nurse and being able to up your meds quite easily or change your medical easily. That's quite important to keeping things stable,
Andy:just for me, or for anyone listening who doesn't really know about seizures, what would be your your advice, maybe for someone who's listening to this, for the first time thinking, I may have had one or maybe having one or my loved one may have had one, what would be your sort of your if you're sitting there and I'm saying right, this is what to look out for. But also, this is what the future can hold for you.
Jess:understanding it, it's a big one for me, for a long time, because I was classed as a child, they wouldn't tell me anything. And I think keep pushing and get them to tell you because when you understand it, it's like you've got a handle on it. Like even if it sucks, even if you're going to have these side effects, knowing what they are makes them easier to deal with. So just get a grip on what it is even if it's horrible. Actually, last questions, find out so you're not, and then you can figure out like this is going to happen, this is not going to be pleasant. This is how I'm going to be able to deal with it.
Sarah:When you go for jobs and things. Do you tell people that you have the seizures? Or is it kind of a I don't think particularly for you, Jess, and Kate, where you're not having is different. Reese, I think they can't it's unavoidable if you're having the full grand mal seizures, but I'm guessing from what you've both said Kate and Jess that you could kind of blag it that people wouldn't necessarily know, like, straight away, do you tell people or do you just hope that they don't notice initially?
Jess:I wouldn't tell anyone initially because I don't think it affects the level of work I could do. But I think when I got a job if I had to talk to like my boss or somebody about health, so they had a disclaimer that I would probably tell them, but with my first job, I didn't tell anybody, because I'd already started the work there. I've been there a couple years anyway. And then I had to tell them because I had one at work. And I had to try and explain what was going on whilst I was having one and I just had to say, don't panic. Don't panic. Just Just Just wait, okay, it will go away. Just know that what's going on and having a seizure. Okay, just stay calm, just.
Sarah:Okay. And what about us? If you have any conversations like that?
Reece:Yeah. So like i said Flybe collapsed and I then collapsed. And I've been out of work since because my tumour started to come back so they are debating gamma knife surgery in Sheffield.
Sarah:Okay, you've had experiences with employers, haven't you?
Kate:Yeah, I'd tell them. Because if I had one of the complex partial ones, I'd have to explain what was happening to me, and I could have one there an then. And then what mainly affects me is the memory side of it, and I need reasonable adjustments. So I have to ask about that.
Sarah:Is there anything that any parting sort of words that you would like to say to somebody who may be listening to this?
Kate:Think I'd say go to the doctors and even if you had a little seizure and you just felt weird, it wasn't normal for you? And kinda demand they look into it because that's what happens to me and I blame all the memory damage I have right now, which mostly affects me the most. Now, on not mean diagnose quicker,
Reece:just don't be scared.
Jess:That's a really good point. But it's hard sometimes. How do you not be scared? You've got to find little ways to try and calm yourself down. Think in that moment, especially with what I have where you are conscious at the same time. I'm just finding ways to stay calm and just breathe and I literally will talk myself and look around the room and say, like, that is a hairbrush. That's my TV. That's my table. And just like you are in this room here, okay, it will pass place myself and that helps us calm me down and then it goes away.
Sarah:Yeah, that's really good advice. Yeah. And Reece when you have your your seizures. What do you do straight afterwards? Because I know like you said, it can be really tiring. Presumably don't always end up being taken to hospital there must be times when you have a seizure, and then you at home? What what happens then
Reece:I usually try to call for some help. It's weird, because the last seizure I had I tried to call my parents, but I couldn't get the words out. So I put myself into the recovery position I thinking right I'm ok gonna have a seizure, it's a weird type, more like a deja vu type thing. so I out myself in the recovery position. so if I do have a tonic colonic then I'm somewhere safe I'n not gonna cut myself or burn myself or whatever, so I lie myself down I don't fall over. I've put myself down on the floor so I'm somewhere safe.
Sarah:What do you do when you come out of it?
Reece:I don't know really. Because it's my parents always found me. And the paramedics are with me a really, really tired and because I had a stroke my rights physically physically in my side packs up gets asleep.
Sarah:You must be quite scary to I imagine to suddenly wake up and although you can't remember what's happened to suddenly be aware that something has happened.
Andy:Do you have anything with you in terms of like something around your neck or land yard or something?
Reece:Well, yes, of course I was going to say something about that II have a Medical Alert Bracelet. And necklace just has epilepsy 999 slash 112 and my parents telephone number on there
Sarah:Do either of you guys have any medical alert bracelets or anything
Jess:I got given a key ring about two years ago, I got really upset about it. And just threw it away I just didn't want I didn't want to have to have it. And this was still when I was very much in like a denial stage. And I just don't want to know, I don't know, maybe I should have somethingI don't know.
Sarah:Kate, what about you?
Andy:now that the weather's getting nice and warm. Do you
Kate:I don't have anything for day to day. But I quite often go to like big Guiding and scout events. And I bought some wristbands. And they just say I have epilepsy on them. Because quite often, in the past I've been mistaken for being drunk. And like, I've never worn it and had one. I don't know how it would make a difference. But yeah, I think if someone saw it because, because I've never seen one of mine, but what other people describe, it would just look weird. And it could be anything could be drunk or on drugs so just weird guys still go on holiday. Do you? Can you fly when you've had seizures? That sort of thing? Does it affect that? Or can you just pretty much carry on as normal? If you want to go to Europe say or fly somewhere you can do that
Jess:Something I'm yet to do? Wait for it
Andy:Is it picking up the courage? Or is it just because you haven't?
Jess:Know what's gonna happen? It's mainly because there's going to be pressure change. And because I've got hydrohephious and a shunt in that's what I'm considering the most and whether that's going to bring on a seizure when I'm on plane, which i don't want
Sarah:does having seizures put, like put you off doing things that they're things now that because you don't want to like you said you don't want to do something that's gonna bring on a seizure or because it's some you know, the fear of having a seizure almost stops you doing things now
Jess:To an extend but um when I was talking to my neurologist, my epilepsy person recently we were talking about seizures and things. I think I don't want to do this. I want it to one live my life and he said, Well, it depends what you're willing to risk. Okay, thank you. Like, I just want to live my lofe
Reece:Yeah, I mean, I used to scuba dive but obviously having epilepsy. Now as a result, I had to give it up because like 20 metres below water and you have a seizure. It's not gonna really be ideal. So it's a shame really,
Andy:are you okay to have you been sort of do go on holidays at all?
Kate:I've flown since I was diagnosed, didn't have a problem. I've only flown twice. We don't normally go abroad anyway. So but yeah, nothing. I didn't notice anything, I don't think even occurred to me to be worried about it.
Sarah:Well, that's a good thing. Thank you all so much for coming on and talking us it's been great.
Andy:Yeah, Cheers, guys. I think my takeaway from this is that, you know, the more you know about it, the better you can probably cope with it. So you know, ask ask ask lots of questions and you know, generally there is hope. If you have seizures it's not the end of everything. So thanks guys asked give me a really, for me a really good insight into the whole subject.
Jess:Thank you.
Sarah:We hope you enjoyed today's episode. Don't forget to subscribe to the podcast so you'll never miss an episode. If you'd like more information, you can visit our website at brain tumour charity.org or email our support team at support at the brain tumour charity.org And finally, before you go if you enjoyed this podcast, please can leave us a review on iTunes wherever you get your podcasts so we can reach more people and raise more awareness