Melissa’s story
“I was only 10 when I was diagnosed,” Melissa says. “Before then I was happy, I was shy and liked swimming and spending time with friends and family. I used to go to the farm with my dad too and cycle and I liked singing and drama.
“It (epilepsy) started with me waking some mornings and I’d have been sick or I’d have bitten my lip and would have a bad pain in my head. A CT scan didn’t show up anything so I was referred to Crumlin Hospital where I had the worst seizure I ever had when I got there. Because they could see what happened it meant that I was diagnosed quickly. For most people, though, diagnosis takes a long time.
“My epilepsy is very complicated. It’s in two parts of my brain. I’ve tried so many tablets over the years. They will work for 70% of people with epilepsy but not for the other 30%. I’m in that 30%. I have lots of different kinds of seizures. I could do everything from stare at the wall to fall on the floor. Sometimes I know seizures are coming, other times I don’t have a clue. I could recover in a few minutes or it could take a day or two.
“After diagnosis was the worst time. I’d never taken a tablet in my life and now I was taking all these tablets twice a day. I didn’t really understand what was happening. I wasn’t allowed to do sports anymore. I had to sit in with the teachers while watching my friends run outside. It was a very different and a hard time.
Awareness
“There was very little awareness of epilepsy in our village back then, in our house even. My mam was reading about it and we had to learn a lot, but now everyone is great – they all know about it. If I have a seizure they don’t panic, they know straight away what to do, so I’m not too worried, I know I’ll be safe if I have one.”
Melissa explains that even where tablets help control the seizures at first, this can change and so she has tried a lot of different medications.
“It would be great to have a medication that can stop the seizures.
“I think having no more exams has helped a lot as I used to stress about them and stress can trigger seizures. Counselling with a person who is trained to help people with chronic illness was very useful during my leaving cert last year as it helped me manage the stress.
“I now work 20 hours a week in an after-school creche and I love it. I always knew I wanted to work with children. I’d love to be an SNA myself because my SNA was a great help to me in school but I know I can’t be that at the moment. Next month I’m starting a childcare course online so I’m looking forward to getting qualifications.
“I would encourage everyone to remember the Time, Safe and Stay instructions (see below). People remembering these three things makes everyday life possible for me and so many others.”
Epilepsy Ireland is the support charity for people with epilepsy. While it is 61% State-funded, the rest must be raised voluntarily. The charity provides community resource officers across the country to help people who have been diagnosed. They liaise with the person, their family, their school or workplace, as necessary.
“Many people don’t realise how common epilepsy is,” says Paddy Geoghagan, advocacy and communications manager with Epilepsy Ireland. “One in 100 people have it. Many don’t realise, too, that you can be diagnosed with it at any stage of your life and that 50% of cases have no known cause. We would ask people to learn about the condition so that they can help if they witness someone having a seizure. Our key message is seizure first aid – make it general knowledge.”
Lisa (Melissa’s Mum)
Lisa’s initial reaction to her daughter’s diagnosis was to protect her.
“I wanted to wrap her in a cocoon and keep her safe and keep her beside me at all times,” Lisa says, “then I went the complete opposite after realising that if Melissa was to have any kind of life I had to ask for help and not just from Epilepsy Ireland, who have been great.
“For me and Eamon it was unusual to ask for people’s time and help but the school and the camogie club were wonderful. She needed exercise so she went to camogie, just for the training, with her friends. Volunteers trained in what to do in the event of a seizure. The people in our village have been amazing. Her teacher researched getting an SNA and the staff trained in what to do, too, so the help has been wonderful. Our GP and pharmacist were also very good.”
Melissa’s illness has meant that she and the girls (Melissa and her sister Emma) don’t go to the family beef rearing farm (outside the village) as much as they used to.
“It’s a change for us as a family. There is definitely more on Eamon’s shoulders now when it comes to the farm.”
For Lisa it’s a matter of trying to stay positive and live life day to day.
“At the moment life in the Ryan household is good and we are enjoying the little things,” she says. “Melissa is working 20 hours a week and we are able to talk about her online course. We are also able to do small things like go to mini golf for Emma’s birthday. Outings weren’t always possible. It’s about appreciating the little things when things are going well.”
For Lisa, Melissa’s diagnosis meant doing a lot of research and hoping that a medication could be found to help Melissa.
“Often people think that tablets solve everything but the consultant told us that you have to be lucky to get the tablet right the first time,” she says.
Melissa’s doctors tried her on a mix of medications but when they failed to control her seizures she was admitted to Crumlin for a telemetry in 2016.
“It’s like an ECG but they hook up your head to a video monitor,” explains her mum. “Doctors could then see her brain patterns over a number of days. We found out that her epilepsy started from two different sides of her brain so it was a complicated form, unfortunately.”
COVID complicated treatment
The outbreak of Covid-19 complicated matters hugely for the family. As an adult, Melissa was meant to transition to Beaumont Hospital when she turned 17, but with clinics closed and consultants unavailable it was a very difficult time for everyone.
“Luckily prescriptions could be refilled,” her mother says, “but we still had tablets that didn’t work, so we fell through the cracks. Trips to University Hospital Limerick because of seizures were complicated by the fact the doctors there couldn’t get in touch with Crumlin.”
Lisa remembers being very tetchy at the time.
“I wanted something done. I felt like we were hamsters on a wheel with Melissa at the centre of it, going round and round.”
Since then Melissa has been recieving good care in Beaumont Hospital but another telemetry in 2021 yielded the same results as the 2016 tests.
“She had 40 seizures over 10 days. The medication she is on now is FDA approved in the US and is couriered to us once a month on compassionate grounds.”
Lisa, Melissa and Eamon Ryan, Borrisoleigh, Co. Tipperary. \ Odhran Ducie .
Eamon (Melissa’s Dad)
“Life changed for us in the sense that one of us has to be around at all times,” says Eamon Ryan.
“Melissa wouldn’t feel safe if we weren’t fairly near. She rings us if she knows a seizure is coming on but she doesn’t always know. Or her friends would ring and we’d have her home in bed before it happens sometimes.”
Eamon says it’s difficult to understand the illness.
“Over the years it’s been all trial and error with different tablets and things. You can’t figure it out really, it’s nearly different every time. Sometimes she has a warning, but one time she just fell in the street – no warning, bang, down.”
He is very glad that Melissa has good friends and that some of them can administer the recovery medicine she requires at times (medication given via syringe between gum and cheek).
“After some seizures, as well as the recovery medication, she would have to go to bed as it knocks her out,” he adds.
As a family they get on with life and supporting Melissa, he says.
“What can you do but get on with it as best you can. I often say to her that she could have something worse. That’s the way we look at it.”
Learn and use
the Time, Safe, Stay approach
if someone is having a seizure
Time
The first thing you should do is TIME the seizure. This is because if a seizure goes over five minutes, an ambulance should be called.
Safe
Keep the person SAFE during the seizure. If a person is having a convulsive seizure, cushion their head with something soft, if possible, and remove any harmful objects, such as furniture, from their vicinity. NEVER put anything in a person’s mouth or restrain them during a seizure.
Be aware that there are also types of seizures where the person does not experience convulsions. Instead, they may “zone out” or stare blankly, become confused or agitated, display behaviours like chewing, smacking their lips, fiddling with their clothes, or wandering aimlessly. In this type of seizure, the person’s awareness of their surroundings is affected, and it is important to gently guide the person away from any danger. As with convulsive seizures, you should never restrict the person’s movements.
Stay
During the seizure and after it passes, stay with the person. Often after a seizure, a person with epilepsy will be confused and, in many cases, exhausted. Make sure to stay with them until recovery is complete, explain what has happened and gently reassure them. The person may have experienced an injury if they have fallen, and if this is the case, ensure normal first aid steps are taken.
For more visit https://www.epilepsy.ie/content/seizure-first-aid
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Melissa’s story
“I was only 10 when I was diagnosed,” Melissa says. “Before then I was happy, I was shy and liked swimming and spending time with friends and family. I used to go to the farm with my dad too and cycle and I liked singing and drama.
“It (epilepsy) started with me waking some mornings and I’d have been sick or I’d have bitten my lip and would have a bad pain in my head. A CT scan didn’t show up anything so I was referred to Crumlin Hospital where I had the worst seizure I ever had when I got there. Because they could see what happened it meant that I was diagnosed quickly. For most people, though, diagnosis takes a long time.
“My epilepsy is very complicated. It’s in two parts of my brain. I’ve tried so many tablets over the years. They will work for 70% of people with epilepsy but not for the other 30%. I’m in that 30%. I have lots of different kinds of seizures. I could do everything from stare at the wall to fall on the floor. Sometimes I know seizures are coming, other times I don’t have a clue. I could recover in a few minutes or it could take a day or two.
“After diagnosis was the worst time. I’d never taken a tablet in my life and now I was taking all these tablets twice a day. I didn’t really understand what was happening. I wasn’t allowed to do sports anymore. I had to sit in with the teachers while watching my friends run outside. It was a very different and a hard time.
Awareness
“There was very little awareness of epilepsy in our village back then, in our house even. My mam was reading about it and we had to learn a lot, but now everyone is great – they all know about it. If I have a seizure they don’t panic, they know straight away what to do, so I’m not too worried, I know I’ll be safe if I have one.”
Melissa explains that even where tablets help control the seizures at first, this can change and so she has tried a lot of different medications.
“It would be great to have a medication that can stop the seizures.
“I think having no more exams has helped a lot as I used to stress about them and stress can trigger seizures. Counselling with a person who is trained to help people with chronic illness was very useful during my leaving cert last year as it helped me manage the stress.
“I now work 20 hours a week in an after-school creche and I love it. I always knew I wanted to work with children. I’d love to be an SNA myself because my SNA was a great help to me in school but I know I can’t be that at the moment. Next month I’m starting a childcare course online so I’m looking forward to getting qualifications.
“I would encourage everyone to remember the Time, Safe and Stay instructions (see below). People remembering these three things makes everyday life possible for me and so many others.”
Epilepsy Ireland is the support charity for people with epilepsy. While it is 61% State-funded, the rest must be raised voluntarily. The charity provides community resource officers across the country to help people who have been diagnosed. They liaise with the person, their family, their school or workplace, as necessary.
“Many people don’t realise how common epilepsy is,” says Paddy Geoghagan, advocacy and communications manager with Epilepsy Ireland. “One in 100 people have it. Many don’t realise, too, that you can be diagnosed with it at any stage of your life and that 50% of cases have no known cause. We would ask people to learn about the condition so that they can help if they witness someone having a seizure. Our key message is seizure first aid – make it general knowledge.”
Lisa (Melissa’s Mum)
Lisa’s initial reaction to her daughter’s diagnosis was to protect her.
“I wanted to wrap her in a cocoon and keep her safe and keep her beside me at all times,” Lisa says, “then I went the complete opposite after realising that if Melissa was to have any kind of life I had to ask for help and not just from Epilepsy Ireland, who have been great.
“For me and Eamon it was unusual to ask for people’s time and help but the school and the camogie club were wonderful. She needed exercise so she went to camogie, just for the training, with her friends. Volunteers trained in what to do in the event of a seizure. The people in our village have been amazing. Her teacher researched getting an SNA and the staff trained in what to do, too, so the help has been wonderful. Our GP and pharmacist were also very good.”
Melissa’s illness has meant that she and the girls (Melissa and her sister Emma) don’t go to the family beef rearing farm (outside the village) as much as they used to.
“It’s a change for us as a family. There is definitely more on Eamon’s shoulders now when it comes to the farm.”
For Lisa it’s a matter of trying to stay positive and live life day to day.
“At the moment life in the Ryan household is good and we are enjoying the little things,” she says. “Melissa is working 20 hours a week and we are able to talk about her online course. We are also able to do small things like go to mini golf for Emma’s birthday. Outings weren’t always possible. It’s about appreciating the little things when things are going well.”
For Lisa, Melissa’s diagnosis meant doing a lot of research and hoping that a medication could be found to help Melissa.
“Often people think that tablets solve everything but the consultant told us that you have to be lucky to get the tablet right the first time,” she says.
Melissa’s doctors tried her on a mix of medications but when they failed to control her seizures she was admitted to Crumlin for a telemetry in 2016.
“It’s like an ECG but they hook up your head to a video monitor,” explains her mum. “Doctors could then see her brain patterns over a number of days. We found out that her epilepsy started from two different sides of her brain so it was a complicated form, unfortunately.”
COVID complicated treatment
The outbreak of Covid-19 complicated matters hugely for the family. As an adult, Melissa was meant to transition to Beaumont Hospital when she turned 17, but with clinics closed and consultants unavailable it was a very difficult time for everyone.
“Luckily prescriptions could be refilled,” her mother says, “but we still had tablets that didn’t work, so we fell through the cracks. Trips to University Hospital Limerick because of seizures were complicated by the fact the doctors there couldn’t get in touch with Crumlin.”
Lisa remembers being very tetchy at the time.
“I wanted something done. I felt like we were hamsters on a wheel with Melissa at the centre of it, going round and round.”
Since then Melissa has been recieving good care in Beaumont Hospital but another telemetry in 2021 yielded the same results as the 2016 tests.
“She had 40 seizures over 10 days. The medication she is on now is FDA approved in the US and is couriered to us once a month on compassionate grounds.”
Lisa, Melissa and Eamon Ryan, Borrisoleigh, Co. Tipperary. \ Odhran Ducie .
Eamon (Melissa’s Dad)
“Life changed for us in the sense that one of us has to be around at all times,” says Eamon Ryan.
“Melissa wouldn’t feel safe if we weren’t fairly near. She rings us if she knows a seizure is coming on but she doesn’t always know. Or her friends would ring and we’d have her home in bed before it happens sometimes.”
Eamon says it’s difficult to understand the illness.
“Over the years it’s been all trial and error with different tablets and things. You can’t figure it out really, it’s nearly different every time. Sometimes she has a warning, but one time she just fell in the street – no warning, bang, down.”
He is very glad that Melissa has good friends and that some of them can administer the recovery medicine she requires at times (medication given via syringe between gum and cheek).
“After some seizures, as well as the recovery medication, she would have to go to bed as it knocks her out,” he adds.
As a family they get on with life and supporting Melissa, he says.
“What can you do but get on with it as best you can. I often say to her that she could have something worse. That’s the way we look at it.”
Learn and use
the Time, Safe, Stay approach
if someone is having a seizure
Time
The first thing you should do is TIME the seizure. This is because if a seizure goes over five minutes, an ambulance should be called.
Safe
Keep the person SAFE during the seizure. If a person is having a convulsive seizure, cushion their head with something soft, if possible, and remove any harmful objects, such as furniture, from their vicinity. NEVER put anything in a person’s mouth or restrain them during a seizure.
Be aware that there are also types of seizures where the person does not experience convulsions. Instead, they may “zone out” or stare blankly, become confused or agitated, display behaviours like chewing, smacking their lips, fiddling with their clothes, or wandering aimlessly. In this type of seizure, the person’s awareness of their surroundings is affected, and it is important to gently guide the person away from any danger. As with convulsive seizures, you should never restrict the person’s movements.
Stay
During the seizure and after it passes, stay with the person. Often after a seizure, a person with epilepsy will be confused and, in many cases, exhausted. Make sure to stay with them until recovery is complete, explain what has happened and gently reassure them. The person may have experienced an injury if they have fallen, and if this is the case, ensure normal first aid steps are taken.
For more visit https://www.epilepsy.ie/content/seizure-first-aid
Read more
Living well with a chronic condition
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