'I was 18, and I didn't know anything about epilepsy. Then I had a seizure'
Today is European Epilepsy Day. Rachel Lynch, who was diagnosed five years ago, tells Kathy Donaghy how she manages her condition
Rachel Lynch was having the time of her life. At 18 she was in her first year in college doing a course she loved and was enjoying her first taste of freedom living away from home.
The eldest of four children, Rachel was at home in Carrigaholt, west Clare, for a weekend with her family in 2009 when her life changed irrevocably after she suffered her first ever seizure.
Rachel had been drinking a cup of tea. She remembers feeling faint but nothing after that until she woke up in an ambulance. Her dad filled in the blanks – she had gone into seizure for two minutes. For her parents, Mary and Richard, it seemed like the longest two minutes of their lives.
Over the next months, Rachel underwent a battery of tests and scans. There was no history of epilepsy in the family, and it was six months before doctors would make the diagnosis that Rachel was suffering from the neurological condition that affects one-in-115 people in this country or 37,000 people over the age of five.
In more than half of all cases, no cause can be found.
However, scans showed a small bump on the base of Rachel's spine that had been there since birth. This small cluster of cells was the cause of the epilepsy.
Rachel says while it was reassuring to know there was a reason, at first she did not cope very well with the diagnosis fearing that the life she was planning would have to change.
"It was such a shock to me – I had no symptoms. It literally happened one day. I had heard of epilepsy but I didn't know anything about it," she says.
"When I woke up after the first seizure, I was completely out of it for about a week. I had never experienced tiredness like it before. I could be talking to someone and I would just drop off."
This continued for the first couple of months after the seizure, although she didn't experience any other symptoms.
After the diagnosis, a drug regime was put in place for Rachel and after initially taking two weeks off college, she returned to her studies.
She suffered four other seizures in 2009. Rachel says that after each episode – which were of varying severity – she'd come around feeling very upset and emotional, and would feel intensely tired for days afterwards.
To date, Rachel has suffered around 20 seizures but hasn't had one since last July.
She remains positive, believing that the condition shouldn't stop people from following their dreams. She thinks that fear or ignorance mean that people are not more understanding of the condition and don't know what to do if someone has a seizure.
She also believes medical personnel are often too quick to jump to assumptions about young people. On one admission to hospital after a seizure, Rachel was put in a dark room next to the nurse's station and asked if she'd been drinking or doing drugs.
"I do feel there are misconceptions out there about young people. They asked me about drink and drugs in front of my parents. It was so degrading and upsetting. After what had happened I didn't need to be accused," she says.
Because the condition is manageable with the right medication, she is keen to point out that employers should not be concerned about employing someone with epilepsy.
Over time, Rachel has learned to recognise the signs that let her know a seizure is coming. "The only sensation I can compare it to is like the start of a panic attack. I take a deep breath and go into a quiet corner. The tablets I'm on at the minute will not let a seizure happen if they are taken properly," she says.
While she's never experienced any discrimination, Rachel feels there's a huge lack of understanding about epilepsy.
"My friends were great. They asked a lot of questions and I told them what to do if I had a seizure which is basically let it happen. You don't restrain the person as this can hurt them. When it stops, you move them into the recovery position and if the seizure has lasted for more than 30 seconds, you call an ambulance. One of my friends had to do that for me."
Rachel says she's just like any typical student, albeit one who has to mind herself a little more.
She keeps a record journal of her medication, when her last seizure was and how she is feeling generally just to keep on top of her condition but says she hasn't let it stop her from doing any of the things she wants to do, including running.
Her studies also included her taking two six-month periods of study abroad – one in Spain and one in Boston. She says the experience was fantastic and there was no issue with medication as she was able to get two six months prescriptions for her medication.
After her first seizure and the ones that followed Rachel says her parents were so concerned that they wanted to make sure she was never on her own.
But over time she says they became happier to loosen the ties a bit and she is completely honest with them about how she is feeling.
Rachel's friends and housemates know about her condition but as long as she's taking her medication and taking care of herself, there's no need to be afraid of living alone.
Initially Rachel says she was nervous of having seizures. But over time, she has realised that there are worse things that could have happened to her.
"I had difficulty dealing with it in the first two years but you have to realise there are much worse things. I guess you just get on with it," she says.
After graduating with a degree in English and History from the University of Limerick last year, Rachel is now doing a masters on the Tudors with a thesis due in September.
She's hoping to undertake a PhD after she completes her masters. Her energy levels, which plummeted initially after her diagnosis, are normal. She makes sure to get plenty of rest and exercise and is mindful that perhaps she has to take better care of herself than most typical 23-year-olds.
Because of the condition, Rachel must ensure she gets plenty of sleep and doesn't drink very much alcohol. "Obviously I can't be going out four or five nights a week. I don't drink very much – certainly not as much as I used to.
"There's a schedule for my medication and I have to stick to that if I want to stay well. I wake up in the morning and my tablets are beside me. Before bed I take one again. If I was going out for the night I'd have to make sure and bring it with me in my bag."
"If I know I have a night out planned I will make sure I'm not doing much the next day. It's little things like that which make me feel older than I am," she says.
"The first year after the diagnosis was really rough on everyone involved. It was really hard on my parents. I don't want to go back to that."
Right now, Rachel says life is good. Her dream is to stay in academia and perhaps work as a lecturer. She is still considering a year travelling after she finishes her masters. She knows that with the right support, the world is still her oyster.
Debunking the myths
* Epilepsy is not a mental illness or a learning disability
* It is not a paranormal, supernatural or psychic phenomenon
* Most people with the condition (95–97 pc) are not affected by flashing lights
* Every seizure doesn't damage the nerve cells in the brain
* People with epilepsy have the same range of ability as everyone else
* Epilepsy is not normally a bar to most jobs – but being a pilot is one where it is
* Most people with the condition can drive a car once they are one year free of seizures
* People with epilepsy can participate in most sports
For more information on epilepsy, see Epilepsy Ireland at epilepsyireland.ie
European Epilepsy Day takes place today