My Warm Table ... with Sonia

Epilepsy triggers, first aid and myth busting with Heather Patman

July 05, 2022 Sonia Nolan Season 1 Episode 10
My Warm Table ... with Sonia
Epilepsy triggers, first aid and myth busting with Heather Patman
My Warm Table ... with Sonia +
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Show Notes Transcript

Epilepsy is an invisible illness affecting one in every 150 Australians.  Nurse and epilepsy educator Heather Patman shares her lived experience with the illness, important first aid tips, and triggers. 

“I don’t get a warning, I get a bit of an aura … I just feel a bit all odd and nearly like I’m having an outer body experience as I see myself fall when the seizure starts ...” – Heather Patman


You’ll hear:

  • What is epilepsy? (2:00)
  • What a seizure feels like (5:00)
  • Medication (8:00)
  • Stigma (11:00)
  • Epilepsy first aid (13:20)
  • Epilepsy myths (19:00)
  • Growing up with epilepsy (20:00)
  • Epilepsy education (21:30)
  • Swimming and water seizures (23:30)
  • Top tips for teachers (26:30)
  • Epilepsy medication and pregnancy (31:40)
  • Managing epilepsy without medication (33:40)
  • ‘Poster Girl’ for epilepsy! (36:10)

Duration: 40 minutes.


Links:

Epilepsy Action Australia


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Thank you!

  • Sincere thanks to Jay (Justin) Hill for his expert sound mastering and patience! Jay, together with the incredible Eva Chye, have inspired me through their passion project If Innovation Could Talk – a YouTube vlog also promoted through LinkedIn. If you have your own ideas for a podcast or video, feel free to reach out to them through the LinkedIn page.
  • Thank you to all my generous guests for their time in sharing their expertise and experiences around My Warm Table.
  • Music: ‘Sweet Soweto’ by Cast Of Characters. Copyright li
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My Warm Table, translated into Italian is Tavola Calda. These were the words my Papa used to describe a table of good friends, good food and good conversation. I always aim to create a tavola calda in my life and I hope this podcast encourages you to do so too!

Sonia Nolan:

Sonia Nolan is my name and you are very welcome here at My Warm Table, an Australian podcast of smart conversations with heart, inspired by my Italian heritage and the concept of a 'tavola calda' - A warm and welcoming table where curiosity, acceptance, and big ideas feed not just your stomach, but also your mind and soul. Today around My Warm Table, we are talking about epilepsy, an invisible illness diagnosed in one in every 150 Australians. My guest is Heather Patman, a registered nurse who specialises in both Intensive Care Nursing and in epilepsy education, something she knows about firsthand having been diagnosed with epilepsy as a small child and experiencing her first seizure at the age of eight. I said before, it was an invisible illness, because other than the MedicAlert bracelet Heather wears, you wouldn't know Heather has epilepsy. She has a full and active life as a nurse, mother, wife, sister, community volunteer, and I'm so proud to say one of my most beloved friends, we have sat at each other's warm tables for 20 years navigating the highs and lows of raising children rebuilding careers, life challenges, many tears and much laughter. Heather, thank you so much for your generosity of time to share your story with me on my podcast today.

Heather Patman:

Thank you for having me.

Sonia Nolan:

Heather, there's so much we can cover today. And I do want to talk about your experience of epilepsy. But start from the very beginning and actually explain what is epilepsy.

Heather Patman:

So Epilepsy is a disease of the brain. And it is all related to the electrical activity of the brain. So our electrical activity trundles along 1000s of kilometres an hour, and it tells us to lift our arms, our body tells us to talk. But when someone is having a seizure, that electrical activity is altered. And when that change happens is when someone will have a seizure. So depending on where that electrical activity actually changes depends on what we see within that seizure. So if it was changed within the front of your brain, then a lot of your motor activities is in that area. And so you'll see that the body will do abnormal motor functions, while they have the seizure, where if it's in the back of the brain, where you've got a section that has all your five senses, people can see things, they can hear things, and they can, you know, feel weird things on their skin. And so it revolves around your five senses. So it does, in some respects, for some seizures depend on where that activity has changed. But it is all about electrical activity within the brain.

Sonia Nolan:

So it's a bit like a short circuit is that I don't know is that the same sort of analogy?

Heather Patman:

Yeah. So it's a bit like your computer's decided to die on you for a second. And then you've got to reboot it and get it back going again. So yeah,

Sonia Nolan:

I remember you have actually used that term rebooting to me after times when you've actually had a seizure that you just said, ah my brain still rebooting and that sometimes can take a week or so can't it? It takes a while to get back into feeling normal again, is that fair to say?

Heather Patman:

It depends. I for the first few days, I feel incapable of doing an awful lot, but everything's just a bit slow. And then it slowly picks up and things move at I know the pace that it isn't normally at. But yeah, it's just exhausting. I suppose your brains just got to, as I say, reboot,

Sonia Nolan:

Can you describe what it feels like to have a seizure?

Heather Patman:

So I have tonic clonic seizures, which are the ones that most people would think of if you said you had epilepsy. It's, I don't get a warning. Some people do but

Sonia Nolan:

some people get an aura something I've heard

Heather Patman:

Yeah a bit of an aura or a warning just enough to sort of get you in a safe spot. Or it may even be hours later, it might just be sort of something in the morning to say look, things aren't right. Either take some more tablets, or you know, just be prepared for it. But I don't have the luxury of that I have a few seconds and that's usually enough for me to generally swear. And that's usually when my family hears me and knows exactly what's about to happen.

Sonia Nolan:

So that's their warning signs. It's not the woop woop of an emergency sign it's a an expletive heard from a room and they know what's going on.

Heather Patman:

Yeah, and then normally there's a thud so they know what's happened.

Sonia Nolan:

And that sounds painful. I mean as much as we can have a laugh about that it actually sounds pretty traumatic.

Heather Patman:

Fortunately, I'm actually not aware of it so that's good in it being traumatic. So yeah, anyway, so I don't get a warning I get a it's it's a bit of an aura I can see something out of the side of my peripheral vision like and I keep sort of trying to look at it. I just feel a bit all odd and nearly like I'm having an out of body experience, because I see myself fall while the seizure starts. And then I don't ever see myself hit the ground. But

Sonia Nolan:

you've got the bruises to show that you have hit the ground.

Heather Patman:

That's where I've lost consciousness.

Sonia Nolan:

Yes.

Heather Patman:

So the first part of the seizure, I'm really stiff, and all my muscles go really stiff. And then there's a jerking phase, my seizures go on for about three minutes. And then when I wake up, I feel absolutely horrible. Think of your worst hangover, and then do a gym session for a day. And that's probably how I feel.

Sonia Nolan:

Oh, that sounds awful.

Heather Patman:

It's really exhausting. Afterwards, I am really, really tired, I probably sleep for a good six hours, I can't really walk I'm really unsteady on my feet. And lights are really bad. Specially anything sort of fluoro is really, really bad, feel nauseous, sometimes I vomit, have a really bad migraine, it's like someone's just sort of pounded my head, and generally feel really exhausted. And it takes me a few days to really feel that my brain has got itself slightly back together. And I've got some energy again.

Sonia Nolan:

Yeah, and I guess this is why it's an invisible illness as well, because all of what you've just described, people probably don't know, happens after the seizure. And I know how you're sort of recovering how your body's rebuilding and resting and, and trying to get back into some normality after a seizure. And so it's it is an invisible illness. But it's also something that you said to me some time ago Heather, which really struck me as it's a it's an illness of fear.

Heather Patman:

Yeah, I take tablets twice a day, and have done since I was eight. And you just always, if I have a seizure, which I've had seizures in the past, and I've missed a tablet, or I've drunk too much, or done something, not had enough sleep been very stressed. And those things all ignite me to have another seizure, I take the tablets twice a day, and you just have to sort of trust them. Because if I don't take my tablets, and I have a seizure, my life really does change an awful lot. And so there is just that element of I may not have a seizure for six years, but you still you take them and you think is my day going to be okay, today, am I going to get through without having a seizure? Logically, yes. But there's so much can happen if I do have a seizure, that it's something that you're just wishing that it doesn't. And for me, that's how I respond to it. But a lot of people, if you're a parent, and your child is taking their tablets, especially if they've newly been diagnosed, a lot of them are trying to get their medications on a level that will stop their seizures. So they're hoping they don't have to increase them any more. Or the parents might not have time off from work available. Because once a child has a seizure at school, you know, when I was a kid, we used to just stay at school where these days, no, you can't, you have to go home. So those sorts of things are the things that make people just consistently fearful that oh my gosh, I hope my child's not going to have a seizure today at school because they're going to be behind their schoolwork, they're not going to be well for a while and I have to take time off work

Sonia Nolan:

so many repercussions and your journey as a child. So you were diagnosed at the age of eight, or that's when you first had your first seizure. And your road for medication to where you are today has been a little bit bumpy over the years, hasn't it?

Heather Patman:

It has Yes. So when I started having seizures, they automatically just put you on medication. And as the years went by, I'd see my neurologist every six months. And you know, Mum would say Oh, I had I had another seizure, so I increased my tablets. And then if you get to a point where that tablet is at a reasonable dose that it's time to start another tablet. So by the time I was, you know finishing high school, I was on two different tablets. I was sleeping for about an hour or two after school every day. And because of the side effects, they just made me so tired. And then I'd already been at school all day that I just needed sleep. So I ended up having to leave the Children's Hospital. And it was only then when I went to a different neurologist privately did I sort of realise that I was actually on a awful lot of tablets. And I think I halved my doses and found out that I'd literally been living in a world of fuzz for years

Sonia Nolan:

Wow you'd been overmedicated throughout most of your childhood there.

Heather Patman:

And what my mom didn't know at the time was that I'd actually had been taking pseudoephedrine which is in our cold and flu tablets. And that builds up in your system. And so what had been happening was it can initiate people having seizures. So once it gets in your system, and it gets to a certain level, you know, we used to take it for a couple of days would always be at the end of my cold that I'd have a seizure. But they just always put it down to it being an uncontrolled seizure rather than something that had actually set it off.

Sonia Nolan:

Ah, so that's well known now?

Heather Patman:

It's supposed to be but I'm not I have told clients when I worked with them about it, and a lot of them didn't know. So it is something that's probably not spoken about as much. But these days when we do take tablets, we're always encouraged to check with our, you know, pharmacist, can I take these other over the counter drugs, and so that's just really important for people to actually do that when they've got epilepsy or taking any medications.

Sonia Nolan:

The other part of epilepsy, so it's a it's an invisible illness. It's a an illness of fear. But the World Health Organisation also says that it is doubtful that there is any other medical condition, so universally neglected due to a combination of social stigma, stigma, low profile and lack of resources. What are your thoughts on that? Heather,

Heather Patman:

I have to agree. It is it's a really hard thing to manage in the community. When I worked for Epilepsy Action Australia, which is a not for profit epilepsy organisation, we, I used to have clients then they ring me up and talk about any issues that they were having. And a lot of those issues you can't fix. It is just a matter of being able to debrief with somebody and having an understanding of what it was like to have epilepsy made the biggest difference. There's such a broad spectrum of people with epilepsy. And those people all need different things. They're at different stages of their life. So it's really hard to actually have a support group that deals with that eclectic group of people. I think everybody knows at least one person that has epilepsy, be that they have told you or not told you. But yet definitely. There are a lot of people out there with epilepsy that, you know, don't talk about it may not affect their lives, or it affects their lives, and they don't want people to know.

Sonia Nolan:

Yeah, and that's a real, I guess, a danger in that is that fair to say? I mean, I don't want to, you know, sort of make people divulge things that are personal in their own health history. But I know my parents, actually many, many, many years ago, probably 50 years ago, had a daughter of a friend come and stay with them. And they were not told that she had epilepsy. And she actually had a seizure that night, of all the nights that night that she stayed with my parents. And they were just absolutely horrified and didn't know what to do. My dad then clicked and he must have had some sort of understanding of epilepsy in in his past somewhere. I don't know how, and he knew to move everything away. So I don't know what what do people do if they were if they are confronted in a situation where somebody is having a seizure in front of them? And they not aware that this person has epilepsy,

Heather Patman:

I think the first thing is to time them. If it is a seizure, it's really important that the seizure doesn't go on for too long. So if it's a tonic clonic seizure, or it used to be called Grand Mal seizure, they're the seizures that we really need to make sure that people don't go on for more than five minutes. The rest of the two different types of seizures, there's, there's about 40 different types of seizures, all very different. But within them, some of them can go for quite some time. And it's not an issue. But with someone that seizure is going on for more than five minutes, it's important that we do time it. The other thing we need to make them safe. And as you said, your dad moved everything away. So it's really important that we protect their head, we move things away from them rather than moving them. So as a nurse, I've been looking after patients for a very long time. And we used to have it so that, you know you'd leave the person that was having the seizure where they were and you just move everything else. And in my whole career, I've only moved one person he happened to have a seizure on a toilet. And so I couldn't move the toilet so we moved him but it's best just to protect them from anything that's dangerous around them. And then just keep an eye on them. Their breathing will go really, really off. When they're having a tonic clonic seizure, their muscles are all going really tight. And your diaphragm which helps you breathe is a muscle. And so when people do have seizures, they're not optimally breathing. And so they do go very blue around the lips and look ash and grey which I always say to people, you've got to consider that to be a really good thing even through it's visually not nice to look at. It's really important because it's just letting us know that the body is doing what it should do. I really don't need to have beautiful pink lips. But I need blood to go to my heart. And my brain and my lungs

Sonia Nolan:

Ah so the body is diverting that blind.

Heather Patman:

Yeah, so youknow, we don't need our limbs, you'll see people's fingers will go blue. But you know, we don't need the blood supply to our fingers.

Sonia Nolan:

at that moment in time, we do eventually,

Heather Patman:

in time, yeah,

Sonia Nolan:

yeah, that makes sense.

Heather Patman:

So even though it looks scary, it's actually a really good sign to say, okay, the bloods going where we need it, and the body is doing exactly what it should do. And once the seizure finishes, the diaphragm then relaxes, and so then the breathing starts getting better. So it's really important to make sure that their breathing goes back to what is normal. And when we look at what is normal, if you sort of just think of yourself, that's what normal generally is. So we want them to their colour to pick up once their seizure finishes, as well, we should put them in the recovery position, to make sure it's the best place for people to get their breathing back. And just reassure them because most people don't have a seizure. I know when I have my seizures, once I do come to, and I've sort of got the world back in a reasonable place in my head, I usually sit down have big cry. So it's, it doesn't really matter how many times you have a seizure, and what you do, you've surrendered your body, to somebody else to look after you. And that's really humbling, because

Sonia Nolan:

you're very vulnerable, aren't you?

Heather Patman:

Yeah. And it's also the person that you are next to that you wake up with, if it's a great friend, or like me, I've had a three year old sit next to me, and he's been my carer for five or 10 minutes while I've sort of, you know, come to maybe five. But, you know, that's something that's really humbling when your child is the one that's your carer. So yeah, so just that reassurance to say that, you know, they're all okay, you know, we're here for you, you know, and just, there's nothing you can do to stop the seizure. So a lot of people want to restrain people to, you know, try and stop it. But it's really important not to restrain them, because that's actually starts making the jerking phase of the seizure, even worse, right. So it's really important just to the seizure will finish the body works in such a way that it changes the chemicals in the brain, which stops the seizure happening. And so it is just a matter of waiting for that seizure to finish

Sonia Nolan:

and protecting the head, as you said, so if you're going to do anything, go and get a pillow,

Heather Patman:

yep you can anything is generally softer than the ground from your thigh, to a handbag, jumper, whatever you can find it's generally softer than the ground. The other thing that people seem to do, which I've never quite worked out, is that they think that we're going to swallow our tongue.

Sonia Nolan:

Oh, yes, that's a big one, isn't it?

Heather Patman:

And when I was at school, I remember the librarian, well I don't remember it, but people tell me, the librarian, put my metal headband in my mouth, thinking that that would stop me swallowing my tongue,

Sonia Nolan:

right

Heather Patman:

The reason people do think it is because you are all going ashen in the face and your breathing things very irregular or very slow. And so back in the day, when we probably didn't know our anatomy very well, or at least general population, we would think that the tongue was occluding, our airway and so we weren't breathing as well. So if we could grab hold of that tongue, and stop at going back in the mouth, then people wouldn't have as much problem with their breathing and, therefore their colour wouldn't be off. But you can actually breathe through your nose.

Sonia Nolan:

You can you can so yes, so that's that's thankfully, being less done. Now or are people still thinking that people are going to swallow their tongue?

Heather Patman:

I do have people ask me, you know, can you swallow your tongue and you can't. So if if you ever did, which would be very incredible. But if you ever did get your fingers in someone's mouth when they had a seizure, there is no way you're getting your hand back until that seizure stops

Sonia Nolan:

because the clenching

Heather Patman:

because the clenching, all muscles have all locked down, and they're not going to relax until the seizure stops.

Sonia Nolan:

There's some really good tips there Heather is there anything else that is I guess a myth of epilepsy?

Heather Patman:

I used to get when I was in high school. I vividly remember getting teased that I was dumb and, you know, stupid and all those words we used to use in the 80s to describe people's mental capacity. And I used to turn around and tell them that Einstein had epilepsy. So

Sonia Nolan:

is that a fact? I guess this is going back to what I was saying

Heather Patman:

it is a fact. earlier about the World Health Organisation talking about the social stigma with epilepsy is that something that you experience Heather growing up, I sort of did, I was very fortunate that all my people that I went to primary school with, also went to high school with me. And so there would have been 60 kids with me. And so I'd had seizures at school. And they'd all seen it. And they were all really chilled whenever I did. The teachers would be the one that would panic and, and run. So they all knew that. It was just me. And I think my parents also made a very conscious decision that just because I had seizures, I was never treated any differently. It was just when Heather had a seizure. Well, you know, we look after her, she has asleep, you know, she's a bit off for a while. So I actually didn't find that I was teased at school. And in the occasion that I told you about when someone told me that I was stupid, that they stood up for me and said, No, Heather's fine you know, this is something that, how dare you even consider that that is the case. So I didn't really get teased. But I did see a story once, where a little boy was getting teased. And it is just knowledge, you know, that's why we were unknown as to what it's all about. And so it's really quick and easy sometimes to tease somebody when you don't have the knowledge behind it.

Sonia Nolan:

Part of your role is that you go and you teach people about epilepsy in schools and community groups, and anybody who wants to know about epilepsy, you've actually got a slide pack and a presentation where you can talk to people about what it is and what they need to do, should they encounter it?

Heather Patman:

Yeah, and it's something that a lot of people just go, wow, I didn't realise it was so complex. And, and that, you know, these were the things that people go through, because on part of the presentation is just to explain some of the, you know, social issues that people do experience from having epilepsy. And a lot of them you would not even think something as simple as having a seizure one day could cause so much havoc to somebody's life.

Sonia Nolan:

So one thing, I guess that I've got another friend who's got epilepsy, and she had to wait into her well into her 30s, before she was able to get her driver's licence. So you know, that's a big deal. And that's really limiting for people, isn't it when they are not able to have a licence to get around and have that independence?

Heather Patman:

Yeah, and it really can slow things down. So I didn't get my licence till I was 20. But when my youngest was about two or three, I wasn't allowed to drive because I had a seizure. You know, people live on public transport all the time. And the one things that neurologists love to tell you, when you beg them for your driver's licence is that having a driver's licence is actually a privilege, not a right. And there are a lot of people out there that don't have driver's licence because of medical conditions. But when you're also not used to using public transport, you're reliant on a lot of people to, to do things for you, like, take my children to sport or pick them up from school, or whatever it might be, that I now no longer can actually drive them to.

Sonia Nolan:

It's a difficult thing. So things that we do take for granted in everyday life. Another area that you need to be careful with, is swimming. Is that right? Heather, because I know you'd love to take your dog to the beach, and you'd love to have a swim. But you must always have someone with you when you're swimming.

Heather Patman:

As a general rule anyway, for people with epilepsy, it's important that there's just someone there that's keeping an eye out, you know, they may be as well controlled as me and you just need somewhere there as a just in case you you just don't know. And I think you'd prefer to have somebody watching you than have a seizure. And if you're in a swimming pool or in the beach, you know, you probably have a high chance without getting saved, you could drown,

Sonia Nolan:

If somebody does have a seizure, in the water, you leave them in the water, like as you are with them in the water, you wouldn't move them out of the water, is that right?

Heather Patman:

So if you're in a swimming pool, swimming pools are slippery, it's a controlled environment, I suppose in a way, and it's better to actually stay with them in the pool, allow them to just have the seizure. And most importantly, keep their head above water our whole aim is to stop them obviously drowning. And once the seizure is finished, then get them out of the pool because the last thing you want to do is slip if you're walking with them to get them out of the pool or in trying to get them out of the pool, drop them in the water. So our biggest aim is just to keep their head above water until the seizure finishes and then get them out. But if we're at the beach, and for those people in Perth, if you went to good old City Beach or Floreat, where we get some nice dumping waves, you would, you know, take them out of the water in the beach straightaway because you just don't know what's coming next. And it's just safer to be on the beach. And if they need CPR, you can can do it rather than sort of having to fight waves while someone's having a seizure.

Sonia Nolan:

That's a really good distinction, I wasn't aware of the differences between beach swimming and swimming pool swimming in regards to first aid for people having an epileptic seizure.

Heather Patman:

The other thing, which is extremely important with anybody having a seizure in water is that even though you might have been right there, you never saw their head go under, it's really important that you do call an ambulance, and you do get them to hospital, because a lot of people don't realise that if someone does have a near drowning, and they are breathing quite fine afterwards, hours down the track, if there's a bit of water in their lungs, their lungs can actually decide, you know, three hours down the track that they're not happy. And they can, you know, stop breathing. And so it's just vitally important that you take them into a hospital, I can't stress it enough, take them into hospital, and get them looked at, because you just don't know if any water has gone into their lungs, and therefore, the consequences down the track are serious.

Sonia Nolan:

In regards to what you teach people, because you also spend a lot of time doing professional development for teachers who might have students with epilepsy or somebody in the school environment, school community with epilepsy, what are some of the top things that you teach them so that they're aware of how to deal with this sort of experience?

Heather Patman:

So we obviously go through first aid. And it's, again, important timing the seizure and keeping them safe, keeping an eye on their breathing, and not restricting them or stopping them from having the seizure, and just letting it take its course. But the other things we sort of encourage them to do is to have a good relationship with the parents. And by doing the course, they have a better understanding of just epilepsy generally, but having an idea of what the seizure looks like, so a lot of the time, I'll say to them, Look, get mum and dad to video, the seizure, so that you know what you're looking for. Because a tonic clonic seizure is something that people immediately picture as an epileptic seizure, but other people do just black out for a few seconds, or they do a variety of different things. And the teachers really aren't quite sure what they're looking for. So to have a video of it gives them an idea. And it's again, that knowledge of what the child's seizures look like. The other thing is to know what their trigger points are. So things like a sleep, you know, you can't do much about that, if you've got a child that's, you know, 10, and didn't get a good night's sleep last night. But if it's something like heat, which is something that's quite common with kids, if we're in the middle of summer, you know, the child's walked to school, we've had morning tea, so they've been running around. And then we did you know, phys ed between morning tea and lunch, and so the kids have got really hot, and then lunchtime comes along. And they didn't really eat much of their lunch, and they're desperate to go and run around again. By which point, they've got really quite hot, and they've never really cooled down. And then kids could then have a seizure at lunchtime or you know, after lunch. And so knowing that heat would be an issue, that's when you sort of say, All right, well, this child won't do PE in summer, or we'll make sure that we do our PE activity is under cover or somewhere so they don't get so hot.

Sonia Nolan:

Yeah.

Heather Patman:

And so it's little things like that, knowing the triggers. And some of the triggers are all really very similar. But some kids do have specific triggers. So having an understanding of what those triggers are making sure that they drink a lot of fluid because of course in summer dehydration can just sort of send them off a little bit. Some kids just having a cold, their systems just rundown just that little bit more and and they just not coping. So there's a whole stack of things that could be triggers for them, some very individual and some sort of common, but knowing those triggers is also really important. The other thing might be having just a pillow in the classroom, all set to go. So if they do have a seizure, you've automatically got something that you can just grab and put onto their head.

Sonia Nolan:

Didn't you have an example of a school class who was so well prepared to respond in case there was a one of the children had a seizure in class? Can you can you tell me that story, Heather?

Heather Patman:

So there was this gorgeous little school and this little boy started having seizures and got diagnosed and went on medications. And he finally had a seizure in class. And he was only in year one or two. So the kids were all sort of seven or eight. And anyway, he he had a seizure this one day and no one really knew what to do on it, the kids level and a few of them then the next day didn't want to come to school because they thought that we're going to catch it or they'd caused it or that we're going to die from it. They had all these extremely misunderstanding. So we went in and educated the kids and taught them first aid. And so after that, that classroom had it totally down pat, it was, you know, if he had a seizure, everyone that was sitting around him was to move the tables and chairs away from him so that he was safe. And the kids at the front of the class, whoever was sitting in those front two, two seats at the door, their job was to run off to the office and let the receptionist know that he'd had a seizure. And at the time, mum wanted them to take him into hospital. So that was what she would do. And then she'd ring mum as well. And she would come to the school. And then all of the rest of the class would get a book out of their desk. And the school was in such a scenario that there was a grassed area out from the classroom. So all the kids used to then pick themselves up with their books, and go and sit outside and read until another teacher came along. And they worked things out. So they had it totally organised

Sonia Nolan:

What a great system.

Heather Patman:

And the kids were great because they were knowledgeable. And he was just another kid in the class.

Sonia Nolan:

And I guess that example also gives us this understanding that everyone feels like they need a job. They everyone wants to help. In a moment when something's gone, you know, a bit of awry a bit out of the ordinary, everyone wants to step in and help in some way and giving every child in that class a job, even if it is you just get a book and you go and sit outside on the grass, that's your job. It empowers them to do something that is meaningful, and gives the dignity and respect to the child as they go through their, their experience. And everyone just knows what their job is. Now one thing, though, that is potentially a myth as well is that people or women who have epilepsy, it's difficult for them to then have children because of the medication they're on. Now, that's something that has not been your experience, because you are the proud mother of three babies who are now all grown up. But you know that that was something that you carefully monitored and worked with your neurologists during the time of planning your pregnancies so that you could actually work through the the medication schedule to ensure that you are all able to have babies, is that right?

Heather Patman:

Yes. So when I changed neurologists out of the Children's Hospital, the I was about 18. And the neurologist I went to was wise enough to say to me, well, Heather, let's put you on medications that if you do get pregnant, it won't matter. Some medications have lots of side effects. And you can't actually take if you're pregnant, because of the side effects, where others have a slightly increased chance of having side effects than the general population, like Spinal Bifida is a 3% chance with one of the medications I took, and it's a 1% chance for the general population,

Sonia Nolan:

right

Heather Patman:

So there'd be some medications that you would sort of, they would prefer you to take. So I made sure way back then that the tablets I took were okay, if I did accidentally get pregnant, or did when I finally did get pregnant. So that was something that I did make a pointed decision on. And then even though the tablets I was on were covering my epilepsy well, after I decided I didn't want to have any more kids, I then actually changed my tablets to one that pretty much you will get a malformation or a side effect on the baby from it. But it's sort of a better medication for my epilepsy. So we decided that we changed it over. And I'm still on that today.

Sonia Nolan:

Are there any other ways of managing epilepsy other than medication?

Heather Patman:

So sometimes people actually don't take tablets. So one of the seizures that people can have is where they just blank out for a few seconds. And they don't have any side effects afterwards, they just keep going on as normal. And even though they might have, you know, a lot of them, it doesn't affect their life. And so some, I've mainly dealt with parents have not medicated their kids, because the side effects of the medications have sort of are worse than the implications of having these odd little seizures a couple of times a year. It's, it isn't, you know, the general population. This is sort of a small group, but they do generally, the main form of treatment is medication. The only time we get into anything different from that is more when epilepsy is really hard to control. And we're just, you know, there's other things which are sort of years down the track that aren't necessarily suited for everybody. And that comes into things like surgery or special diets and things like that, but it's something that's not really sort of looked at for quite some time. You know, we have that little bucket list of things that we just would like to do before we we pass? Well, I'm probably never going to be able to do it, but I would like to know what it's like to not be on the medications. Because we didn't sort of talk about it for about, you know, over 65 years, are the biggest group of people that get diagnosed with epilepsy

Sonia Nolan:

is that so?

Heather Patman:

and it's mainly due to people having strokes. But those people having lived all these years know exactly what it's like to not be on the medications. And really do notice a difference when they start, where I'm the complete opposite, I don't remember what it was like to not be on the medications. And I know they make me groggy. as mild as it might be, I just know there's this fuzz that's there. And I suppose when I changed my tablets, when I was 18, and halve them, it really was like, I'd been looking through this fuzzy fog for years, and all of a sudden, the world opened up, but I still knew it wasn't crystal clear, right. And so there's always yeah, that's one of my bucket lists to take myself off my tablets. But the ultimate side effect of that is that I will have a seizure. So it's not going to happen.

Sonia Nolan:

It's the lesser of the two. I want to take you back to many years ago when you were asked to speak at a conference, and share your experiences, because I think, you know, one of the incredible things you do as an educator on epilepsy is is not just know the textbook version of things, but actually you're able to give your life experience to it. And there was a conference some years ago, where you were speaking to neurologists and and health professionals. And you were really giving them the lived experience of things that they knew in scientific evidence, but not necessarily in lived experience.

Heather Patman:

Yeah, I got to tell them my story up until that point, and I had kids at the time, and I suppose I just wanted to let these people know that ultimately, you can actually live quite a normal life. And I've just been fortunate that my medications have have kept me stable on without having seizures. And really the only time I've had a seizure is when I've done silly things like drink too much, or miss my tablets or just not look after myself. And so got three beautiful kids. I have my driver's licence. So I've sort of, I suppose I'm a good example of what life can be like,

Sonia Nolan:

you're the poster girl for epilepsy Heather!

Heather Patman:

I'm the poster girl! So yeah, I think it's nice to give those people a bit of hope that it might be a bit of a struggle at the moment getting their medications, you know, right so that they're not having seizures. But you know, you can a lot of people that are young think I'll never have kids, how am I going to do that. And it is just a way of maybe changing little things. And when I had my kids, I never bathed them by myself. It was one thing I never did. I did bath the kids, but I always had someone else there with them. And ultimately, and you know, my husband did it, because then he got to bond with them. I never changed their nappies on a change table, saved myself some money. And I always did it on the floor - it was all things that if I had a seizure, and I was holding the kids, how could obviously if I had a seizure holding them, I was going to drop them. So when do you hold them? And when are those dangerous times?

Sonia Nolan:

You know, it's interesting you say that because obviously I was around your life at that all of those times. And it never even occurred to me, that's why you did that.

Heather Patman:

There are things that you might just have to change. But you didn't even notice

Sonia Nolan:

didn't even notice

Heather Patman:

or register. that's what I was doing. So that's really good, because then I just looked normal, which is really what all of us sort of want to look like.

Sonia Nolan:

Heather, thank you so much for sharing your story today. As much as I've known you for so many years now, I've always learned something new from you each time we talk and today is no different. So thank you very much for helping us understand a little bit more about epilepsy.

Heather Patman:

Well, hopefully someone out there is listening to this and feeling a little bit better and can help someone else or help themselves.

Sonia Nolan:

You've been listening to My Warm Table with Sonia Nolan. In Italian, a'tavola calda' is a warm and welcoming table where you can share big ideas, friendship, laughter and life. So much happens around the kitchen table, and I wanted to amplify it here in this podcast. My aim is to feed your mind and soul through smart conversations with heart. No topic is off limits, but good table manners rule. I hope you'll join us each week as we set the table for my extraordinary guests who will let you feast on their deep knowledge, life experiences and wise insights. Let's keep the conversation flowing. Please subscribe to the My Warm Table podcast and share it with your friends and networks. Perhaps if they're new to podcasting, take a moment to show them how to download and subscribe so they don't miss an episode either. I'd also love you to join our community on Facebook. You will find the group at My Warm Table Podcast. Your support is very much appreciated - so that together we can eat, think and be merry!