Epilepsy and surgery with Hannah Wilson

Epilepsy and surgery with Hannah Wilson 

Hannah has focal impaired awareness seizures and since we last spoke, 12 months ago, they have got progressively worse. Increasing in frequency and duration. They have also become tonic clonic.

The seizures leave Hannah, bruised, sore and emotionally and physically wiped out. Because of this Hannah has been undergoing to tests which have revealed that she has refractory epilepsy which means that she is drug resistant.  There is an opportunity for Hannah to undergo brain surgery, which while is scary she sees it as a golden opportunity to be seizure free.

Hannah works at Asda, but her passion is her volunteer role with St John’s Ambulance.

“I will fight to the very end to be seizure-free.”

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support
Epilepsy Society

Listen to Hannah’s first Sunflower Conversation with us. 

Hosted by Paul Shriever and Chantal Boyle, Hidden Disabilities Sunflower.
  
 Want to share your story? email conversations@hiddendisabilitiesstore.com

Transcript

Paul Shriever:

Welcome, guys. My name's Paul. Today, we're going to be speaking with Hannah Wilson. Hannah has very kindly agreed to speak to us again. We spoke to her back in 2021 about her epilepsy. How're you doing, Hannah? Nice to see you again.

Hannah Wilson:

Nice to see you. Yeah, I'm okay. Thank you.

Paul Shriever:

That's great. We've all also got lovely Chantal with us. How're you doing, Chantal?

Chantal Boyle:

Hi, I'm really well, thanks. Really happy and excited to be catching up with Hannah again to see how things have been progressing for her.

Paul Shriever:

Can you just explain a little bit about your epilepsy, please, if possible?

Hannah Wilson:

Yeah. So I have focal impaired awareness seizures. So, that means that I lose consciousness. They only affect one part of my brain. Although, now my seizures have actually started to change to tonic-clonic, which affects the whole brain. So with epilepsy, it can change for some people. Gradually, over time it can become worse, which is what has happened to me. So now rather than my seizures affecting just one part of my brain, it's the whole part. So they're lasting longer and they are becoming a lot worse.

Paul Shriever:

That's not good. That's sad. And is that something that has got progressively worse since we last spoke to you?

Hannah Wilson:

Yes, it has.

Chantal Boyle:

What impact is that having, Hannah, on your life?

Hannah Wilson:

A huge impact. I've had to have quite a lot of time off work and it also limits me with being able to go out and see friends. And the injuries that I get from my seizures, I then have to take time to recover. That can take several days, so then I'm at home not able to do anything. It's tough.

Chantal Boyle:

Yeah. It sounds really tough because tonic-clonic is when you fall to the ground, isn't it?

Hannah Wilson:

It is, yeah.

Chantal Boyle:

And were you falling to the ground with your focal impaired awareness as well?

Hannah Wilson:

Yes, I was. But with the tonic-clonic, they last longer. So some of my seizures have been lasting up to two minutes when before it was usually about 30 seconds.

Chantal Boyle:

And what is the guidance for people when to call an ambulance? How long is it that people should wait before they do that, generally? I mean, we're not giving any medical advice here.

Hannah Wilson:

Yeah. So usually, it's five minutes, if the seizure hasn't stopped after five minutes. I always tell people with me if after two minutes to call an ambulance, because that's up to how long it can last now, but generally it's five minutes.

Chantal Boyle:

I mean, two minutes for you and for whoever is with you at the time must seem like a lifetime.

Hannah Wilson:

It does, yeah.

Chantal Boyle:

And it's exhausting as well as painful?

Hannah Wilson:

It is, yeah. It takes so much out of me, just those two minutes. The rest of the day, I'm just completely wiped and I can't remember anything that's happened before, and all I want to do is go to sleep.

Paul Shriever:

How did you know that it changed from one condition to another? Is that something that you were diagnosed with, and did you go to the doctors and speak to them and say, "I feel that this is getting worse or it's changed"?

Hannah Wilson:

Yeah, I did. So I went to see my consultant back in August for a review, and we had a chat and I explained to her how my seizures have become worse. And then she said that it would be best, because I've been on two medications now, and that still hasn't worked, that it'd be best to get a referral to another hospital. And then when I spoke to the consultant at that hospital, she then diagnosed me with refractory epilepsy, which is drug resistant.

Chantal Boyle:

Outside of this conversation, Hannah shared with us that she's been put on a different medication. So I'm just interested to find out, is it making any difference?

Hannah Wilson:

No, not at the moment.

Paul Shriever:

Are there side effects to this medication?

Hannah Wilson:

It has made me quite tired. And the new medication that I'm going to be going onto in a few weeks will make me even more tired than I am now. So I'm not looking forward to that.

Chantal Boyle:

With the medication that you take, is it just heading to the brain or is it [crosstalk 00:04:25]-

Hannah Wilson:

It's meant to block the signals in the brain for where my seizures will then happen. That's what it's meant to do is, yeah, to block the signals.

Chantal Boyle:

What will be the next step after you've completed this trial?

Hannah Wilson:

So after that, I'm hoping that I will be a candidate for surgery, but in the meantime, we've just got to continue with this trial of new medication. And I've also still got to have some more tests.

Chantal Boyle:

You are listening to the Sunflower Conversations with Paul and Chantal. To learn more about the topics covered in today's podcast, details are in the show notes. Having surgery on your brain, wow, it's mind-blowing, isn't it? And so you've mentioned that they need to go in at the point where the seizures first start. Have they explained anything more to you, like what they do to the brain?

Hannah Wilson:

So what they're going to do is cut out the brain tissue where the seizures are starting.

Chantal Boyle:

Does it mean that that brain tissue is damaged, then? Is that what that means?

Hannah Wilson:

Yes. Yeah. So that's, yeah, the brain tissue which is causing the seizures. So, that's the abnormal part.

Chantal Boyle:

Wow. And then, what's the prognosis if you are elected to have this surgery? Do you know what the prognosis is afterwards?

Hannah Wilson:

Well, I know that 70% of people, once they've had surgery for their epilepsy, are seizure-free, but it could take up to two years to know whether it's actually made a difference. And I will have to continue with medication for at least up to a year to know whether it has actually made the difference, as I say. But, yes, I will have to continue with medication. And hopefully, I will be able to lead a seizure-free life, but I will not know straight away.

Chantal Boyle:

Yeah. Well, we'll be rooting for you. When they start, before we get to this point, they start to decrease your medication to pinpoint exactly what exactly is happening and where, will you be in the hospital, like living there so that they can monitor you 24/7, or will you be at home?

Hannah Wilson:

Yeah, I will have to go into hospital for a few days when they continue with the rest of the test, when they take me off my medication to induce seizures, which I'm obviously not looking forward to, but they've got to do this to find out if I can have surgery. And I do really hope that I will be able to have the surgery. It was quite frightening at the start, the thought of having surgery. But as soon as my consultant at West Suffolk Hospital mentioned it, I said, "100%, yes. I would like to have surgery." I've been waiting so long to have that possible opportunity, and now that it has been mentioned, I will go for it if I do get offered it.

Chantal Boyle:

Yeah. Yeah. Well, it's sounds like it's such a long waiting list as well. It's like, it's a golden once in a lifetime opportunity, isn't it, for you to rid yourself of the seizures? So I can imagine that you want to grab that with both hands in spite of how scary it is.

Hannah Wilson:

Yeah. I've just had to fight for so long. And it's not like somebody will get offered brain surgery straight away. It takes quite a few years before you actually get offered the surgery. So to be offered the surgery, I was, "Yes." Because they've increased my medication so much and it's just got worse. And it just got to a point where I thought, "There's nothing that's going to make a difference with the medication." With one of the medications that I take now, it's my lamotrigine, which I've been on since 2012. I'm gradually reducing that every two weeks. And it is in about three weeks time when I will be going on carbamazepine, which is the medication that I was on when I was a teenager. And that did actually allow me to have a seizure-free life for five years.

            So we're hoping that it might make a difference, but as I'm older and my seizures have become worse now, there's a potential that it may not. And I don't really have a lot of faith, considering that I'm drug resistant. But in the meantime, leading up to surgery, we've got to try and see if there's any other chances of me becoming seizure-free. I mean, it may make a little bit of a difference, but I still think that the best option is surgery. Addenbrooke's Hospital that I've got the referral to now, they do need to do these tests just to make sure, just double-check, and I'll find out eventually whether I will be a candidate for surgery. But if so, it's 12 to 24 months waiting list.

Chantal Boyle:

That's a long wait, isn't it, for you to still continue with your life, experiencing these seizures and the pain and the aftermath of those? And I would imagine the constant fear that, "Am I going to have a seizure today?"

Hannah Wilson:

That's a big thing with epilepsy is you just don't know when it's going to happen. It's unpredictable. When I go out, it could happen. When I'm at work, it could happen. Just anywhere that it could happen. Even when I'm at home, just go about my daily life, and then all of a sudden I have a seizure and I don't even know when it's coming.

Paul Shriever:

Hannah, does that give you anxiety? Does that make you anxious?

Hannah Wilson:

It does, yeah.

Paul Shriever:

How do you deal with anxiety?

Hannah Wilson:

I find if I go out, then I usually am with my best friend, because she's really good with reassuring me. And she always says to me, "You're going to be fine with going out. I'm here." So I always take her with me when I go out. Other than that, I just try my best to deal with it on my own, which isn't always easy. But I tell myself, "It's going to be okay. Nothing's going to happen. Just got to work through this." Just got to continue with life because I can't let it take over my life.

Chantal Boyle:

It can completely control everything, your every move, can't it?

Hannah Wilson:

Yeah.

Chantal Boyle:

And understandably why.

Paul Shriever:

How has this impacted you at work?

Hannah Wilson:

It's been very difficult. I mean, as I say, I have had quite a lot of time off lately. And when I have gone back to work, I've then had to take it very steady as I've had quite a lot of bruising and with the injuries. So I'm not able to be on my feet a lot. So I'm having to then sit on till instead.

Paul Shriever:

Yeah. So your employees and colleagues and people who you work with are, I don't know, understanding?

Hannah Wilson:

Yeah. And I do get that they are also frightened if I do have a seizure. That's completely understandable. But they have been really good.

Paul Shriever:

Have they made adjustments for you?

Hannah Wilson:

So I was working late shifts when I first started at Asda, but I asked them if I could do early shifts instead. So then I can make sure that I have taken my medication, because I've now gotten into a different routine with my medication. I said, "Please, can I do early shifts? Because then I know I have taken it." The problem with my late shifts is that although, okay, I didn't have to get up as early and I could start later on in the day, it was quite difficult to actually be able to take my medication on time. Whereas at least I know with the early shifts that I have taken it, and then in the evening I will have been able to take it. So they've changed the shifts, which is really good, really helpful.

Paul Shriever:

Yeah. That's a good thing. And is it important to you, Hannah, obviously, to continue to work? I mean, can I ask you about your life? For example, do you live at home? Do you live on own? Do you have a partner? What's the support around you?

Hannah Wilson:

I live with my mum at the moment, but I want to continue working. I don't want to have to be signed off work and just at home because I think that would have a big impact on my mental health. And I'd just be sitting here doing nothing, whereas I'd rather go to work. And, okay, I might have a seizure, but I'm still at work and there's people around me. I can socialize. I just couldn't sit at home all day. And I also went back to St John Ambulance last year in the summer. So I'm now doing that again. I'm a first aider for St John Ambulance.

Paul Shriever:

That's fantastic.

Hannah Wilson:

Yeah. So I've been on some events since I joined again back at my unit, and that's been really good.

Chantal Boyle:

What kind of events have you been to?

Hannah Wilson:

I went to some Christmas fairs and I've also been to football in Norwich. That was really good.

Chantal Boyle:

Oh, it must be such a worthwhile role to do.

Hannah Wilson:

It is. And when I'm with them, I know that I'm safe if anything happens to me. And they always say to me, "If anything happens to you when you're at an event, you know that we're here. We know what to do." So, that's great. But I've never actually had a seizure whilst I've been on duty with St John Ambulance and I hope I never do.

Chantal Boyle:

Yeah, yeah. Well, that's reassuring. Maybe it's something to do with that anxiety you mentioned. When you're feeling stressed, you know there you're in safe hands.

Paul Shriever:

You are listening to the Sunflower Conversations with Paul and Chantal. To learn more about the topics covered in today's podcast, details are in the show notes. Who do you turn to for emotional support? Like, what does your mum mean to you and your friends?

Hannah Wilson:

Everything. Everyone is just so supportive. If I have a day where I'm feeling down, then I'll either talk to my mum about it or I'll talk to my friends about it, and everyone reassures me. My friends have said how strong I am and how determined, that I'm always fighting. And even after I've had a seizure, straight away I just want to continue with my life and just keep that independence as much as I can. And I will fight to the very end to be seizure-free.

Paul Shriever:

Yeah. That's lovely. When you talk about having someone around you that reassures you, do you think that that helps you psychologically to feel more relaxed? And in turn, does that then mean that perhaps you're less likely to have a seizure?

Hannah Wilson:

Yeah, I do. I think so. Yeah, definitely.

Paul Shriever:

It's interesting. So if you're stressed, for example, that could heighten your anxiety and in turn perhaps trigger something?

Hannah Wilson:

Yes. I've had times at work where I've been really stressed and then I've started to overheat and get a bit dehydrated if we have massive queues, and I've almost had a seizure before, and, yeah, that's been horrible. That's another thing actually with work, I've had to ask them, "If I am wearing my mask, can I take it off?" They always say, "Yeah, that's fine." Because sometimes I decide, "Yeah, I'm going to." Whereas, other times, I don't.

Chantal Boyle:

I think that's a good point that you've made there because it's been such a debate about mask wearing and being exempt. And I think your approach to it is a sensible one. If you can wear it, you absolutely will, but not to the detriment of your own health.

Hannah Wilson:

Yeah. So the decision that I made is that if I'm on a till or if I'm behind customer service, because we've got the screens anyway, then I do not wear my mask. But if I'm on self-service and there's a lot of people around us, then I do.

Chantal Boyle:

And are you still wearing the Sunflower?

Hannah Wilson:

I am, yeah. I wear that every day to work.

Chantal Boyle:

Does anybody ask you about it?

Hannah Wilson:

Yeah, I do get a question sometimes and when people see that it says, "I have epilepsy," and then I'll just explain to them.

Chantal Boyle:

And why do you wear it, Hannah?

Hannah Wilson:

As well as it being important for people to be aware that I have a disability, just, you'll see people, how they react when they're like, "Oh, you're not wearing a mask." Whereas at least I've got the Sunflower lanyard on, so I think, "Well, maybe they might actually realize that there is something as to why I can't wear a mask." But it's difficult because it's an invisible disability. So a lot of people will look at me and they'll think, "Why is she not wearing a mask? She's absolutely fine." So I do find it's important to have that on and people, yeah, they see that I have epilepsy.

Chantal Boyle:

Because Asda now have joined the Sunflower network, haven't they?

Hannah Wilson:

Yeah, they have.

Chantal Boyle:

And the staff are receiving training about the Sunflower and non-visible disabilities. So we're really pleased to welcome Asda on board, actually, because they're such a big family shopping supermarket, aren't they?

Hannah Wilson:

They are, yeah. They are really good.

Paul Shriever:

Do you have any kind of coping mechanisms? I'm always interested in how people deal with their conditions.

Hannah Wilson:

Having my friends around me really helps to cope with my epilepsy. And also, I'm part of some support groups on Facebook. So if I have a problem with anything, then I can put a message on there and then people reply. Such as, this medication that I'm going onto, and I was told the certain side effects by my consultants. And then I put a message on some of the groups and said, "This is the medication I'm going onto. What side effects have you had with it?" And then I get a response. So it's really helpful to be in those support groups.

Chantal Boyle:

So, Hannah, thank you so much. As ever, it has been a delight to talk to you and find out how life has been for you, well, over the last 12 months. It sounds like it's been incredibly challenging, but as you said, you are a fighter. And I have to be honest, we have kept in touch by email over the past year, and I'm really pleased to see you looking well and talking so positively about the future in spite of your increased seizures and the impact that has had on your life.