What it's like to live with epilepsy - with Sharon Smith
Monday 19 March 2018
Sharon Smith was diagnosed with epilepsy in her early twenties. She was completing her second year of university when her first seizures set her on a long journey towards diagnosis and treatment.
We spoke with Sharon about what it was like to learn she had epilepsy, how epilepsy affects her now and what she wants others to know about living with epilepsy.
What is epilepsy?
Epilepsy is a medical condition which means a person has a tendency to have recurring seizures. Epilepsy can take many different forms: there are over 40 different types of seizures which all have different symptoms. The condition is not contagious and can affect anyone at any age and from any background.
Sharon was first diagnosed with epilepsy as an adult.
She says, “My MRIs show that I was born with epilepsy, but it didn’t present until I was in my second year of university. I started having full convulsive seizures, called tonic-clonic seizures.”
Now on medication, Sharon has ‘aura’ seizures, which are much milder. You can learn more about the different types of seizures on the Epilepsy Queensland website.
How is epilepsy diagnosed?
Because epilepsy describes a range of conditions, diagnosis and treatment varies from person-to-person.
Sharon was diagnosed after a lot of investigation and many different tests.
“It took 18 months to reach a diagnosis of epilepsy. I’ve seen many neurologists, paramedics and medical professionals in my journey, and have had lots of medical equipment strapped up to me. There were quite a few different tests, including the usual tests that you have when you have neurological incidents, like MRIs and CT scans. I’ve also had heart tests, ECGs, and I even spent a week in hospital for continuous monitoring.
They put an EEG – the one with little electrodes that they stick all over your scalp – on me, and monitored me on a video camera. Over the week, they made me slowly go without sleep. One day I had to have two hours less sleep and the next day it was a little bit more, and then there was one night I had to go a full 24 hours without sleep. They were trying to bring on a seizure: they wanted to get a really good idea of what happened in my brain during a seizure.”
How is epilepsy treated?
Epilepsy treatment is tailored to each person and how epilepsy affects them. According to Epilepsy Queensland, 70% of people diagnosed with epilepsy can control their seizures with medications, while surgery, Vagus Nerve Stimulation, and dietary therapies can also be options for some people.
After receiving her diagnosis, Sharon had to weigh up treatment options.
“After the week of monitoring, the report came back that I had a 40% chance of surgery working [to treat the epilepsy].
I decided that 40% wasn’t good enough for me. It takes a year to fully recover from the surgery, so I didn’t really think that at the age of 26 – when my career was just taking off and I was in a long-term relationship and thinking about family – it was the right time to take a year off. Not for only a 40% chance of success.
I kept seeing a neurologist every few months and playing with the many medications that are out there. While we were finding the right medications, I had to cut back on a lot of activities, like driving. That was really difficult for me; it meant I was less independent than I could be.
Eventually we managed to get a good combination of medications that worked. I take about 20 pills a day – it’s a mouthful! It’s pretty expensive, but I’m just happy that it works.”
Living with epilepsy
Sharon was diagnosed with epilepsy 15 years ago, and has been managing her condition since.
“It’s been about 13 years since I’ve had a tonic-clonic seizure. The medication has managed to get me down to seizures called ‘auras’, which basically make me feel a bit dizzy and make me need to sit down, maybe I’ll drool a little bit. They’re nowhere near as bad tonic-clonic seizures.”
Controlling her seizures with medication has also helped Sharon take back control of her life.
“This has meant that I could start driving again, it meant that I could have a job, and the most important thing was that I actually became a mother! We had to fiddle with the medications a bit then, because there are certain medications that you’re not allowed to take while you’re pregnant or breastfeeding.”
Epilepsy is now a part of Sharon’s normal, day-to-day life. From making sure she has enough medication supplies to watching the weather, taking care of herself means always taking epilepsy into account.
“I now have to deal with the daily issue of taking medication and making sure I’m stocked up, particularly around holidays and weather events.
I get auras fairly frequently. It’s quite common for women to have auras around the time of their period, and that’s the case for me. At that time I rely on my husband to do a lot of the driving.
On bad days, I might work a bit slower or do less physical work around the house. Hot days can trigger auras, and funnily enough, so can thunderstorms! I get migraines as well – I have no idea if they’re linked to epilepsy, but often if I get one I get the other.
Mental illness is a large factor in epilepsy, too. I know that there’s a link between depression and epilepsy, and anxiety as well. I worry about my future health and my current health if I’m having a bad day. It can get me down. I worry about how I’m going to look after my family, if I’m going to be able to socialise with my friends.”
As a journalist, Sharon found that stressful working environments played a role in the management of her epilepsy. Since striking out on her own as a freelancer, she’s able to balance being able to work she enjoys and looking after her health.
She says, “Stress is a big factor in how I’m feeling. I used to work in a very stressful environment, and I found that it was making me feel ill in regards to my epilepsy. Once I went freelance, it really improved my health. I’ve realised that that’s it for the rest of my life: I can’t go back to fulltime work. I’ve found that a lot of people with chronic illness say the same thing.”
Epilepsy first aid
While they mean well, Sharon has found that many people have an incorrect idea of what to do if someone has a seizure.
“A lot of people think that when someone has a seizure, you need to stop them from choking and call an ambulance straight away. Neither of those things are true.
People can’t choke on their tongue: that’s actually physically impossible. And you only need to call an ambulance if it’s someone’s first seizure or if it’s been going for more than 5 minutes.”
So what should you do if someone around you has a seizure? Epilepsy Queensland has two seizure first aid procedures, one for ‘Generalised tonic-clonic seizures’ and one for ‘Focal seizure with impaired awareness’.
When having a generalised tonic-clonic seizure, a person will lose consciousness, their muscles will stiffen, they may fall and their body will make jerking movements. If someone is having this kind of seizure, you should:
- Time the seizure
- Protect from injury by removing hard objects from the area, placing something soft under the person’s head and loosening any tight clothing
- Gently roll the person onto their side as soon as it is practical to do so
- Reassure and reorientate the person as they regain consciousness
- Stay with the person until the seizure has ended and they are fully alert
You should not restrain the person’s movements, put anything in their mouth or give them anything to eat or drink until they are fully recovered.
When having a focal seizure with impaired awareness a person will show outward signs of confusion, unresponsive or inappropriate behaviours. It might seem like they are intoxicated on alcohol or other drugs. If someone is having this kind of seizure, you should:
- Time the seizure
- Protect from injury by gently guiding them past any obstacles and away from potential dangers
- Reassure and reoriented the person as the seizure ends
- Stay with the person until the seizure has ended and they are fully alert
You shouldn’t restrain the person, as this might increase their confusion.
People who know they have epilepsy should have a seizure management plan. If you know the person and are aware of their plan, follow the steps if they have a seizure. If you are looking after someone you don’t know who has had a seizure, call Triple Zero (000) for an ambulance.
You should also call an ambulance if:
- the seizure lasts longer than 5 minutes
- a second seizure quickly follows the first
- the person remains non-responsive for more than 5 minutes after the seizure stops
- the person is having more seizures than is normal for them
- the person is injured or goes blue in the face
- the seizure occurs in water
- the seizure occurs when someone is eating or drinking
- the person is pregnant
- the person has diabetes
- you know, or believe it to be, the person’s first seizure
- you feel uncomfortable dealing with the seizure.
Sharon also recommends that people treat someone who is having a seizure with respect, and not make them feel like a spectacle.
“I find when I have an event, an aura or in the early days a full seizure, all those people wanting to come up and help can be really embarrassing. It’s actually the worst part of having a seizure. I just want a couple of people to help and for everyone else to give me my privacy.”
You can find more information about seizure first aid on the Epilepsy Queensland website here.
Epilepsy and other people
When Sharon was diagnosed with epilepsy, she realised she’d have to start having conversations with those around her about her condition. Not knowing much about it before being faced with epilepsy herself, she was surprised by the course these conversations often took.
“The most surprising thing about epilepsy is how many people know someone with it. It’s really common, but when I first got diagnosed I didn’t know anything about it.
When I tell people that I have epilepsy and let them know what to do when I have a seizure, they go, ‘Oh yeah, my cousin has epilepsy.’
And I think, ‘Why don’t people talk about it? We need to talk about it a bit more.’ ”
There are around 100,000 Queenslanders living with epilepsy, with about 2% of people developing epilepsy at some stage of life. Sharon hopes that talking about epilepsy publicly will help people understand the condition and those who live with it.
Sharon regularly takes part in awareness raising activities run by Epilepsy Queensland, and is taking part in Purple Day during March to help raise public awareness and funding for essential services for children and adults living with epilepsy.
“Because epilepsy is such a broad field, there are so many areas that need exploring. There’s medication, but also links between mental illness and epilepsy, migraines and thunderstorms, or just the reason for epilepsy develops in the first place. Increased awareness helps increase funding, which helps increase medical research.”