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Dublin Live

Health

Danny DeVaal

Young Irish woman went to A&E more than 200 times due to rare disease that stumped doctors

Disease AE (Organization)

A young Irish woman has gone to A&E more than 200 times due to a debilitating rare disease that causes two hour long seizures.

Courtney O'Connor says that "sometimes I'm just existing" as the 24-year-old said that the mystery illness has stumped medics. She finally got diagnosed in 2022 with a condition called Functional Neurological Disorder.

The Offaly woman first noticed something was wrong when she developed muscle spasms that eventually turned into seizures five years ago. Speaking to the Irish Mirror, the music teacher said: “It actually sickens me how much money I’ve probably spent on A&E visits. I reckon I’ve been more than 200 times since this started.

“I’m living at home again because it’s just too unsafe for me to have a place by myself. I was studying in Cork and had a seizure. So if I needed an ambulance at that time they would have had to break down the door.

“At that point, I realised it was too dangerous. I moved home and completed my degree online. I have lost a lot of jobs because of my condition. I’ve even lost friends because they just couldn't take it either with me ending up in the hospital all the time.

“I can’t really have a social life because if I stay out late or drink alcohol I risk having a seizure. There are periods of time where I feel like sometimes I’m just existing.” Courtney said FND is not fully understood and revealed some medics may not even be aware of it.

She has visited countless doctors and has been to A&E more than 200 times before she eventually met with a neurologist who told her about FND last year. During trips to the hospital, Courtney claimed some medics asked her if she had taken illicit drugs such as cocaine while others have even asked her if she was faking it.

In the beginning, she began noticing spasms that she thought would go away and initially believed it could have had something to do with surgery she had on her spine for an unrelated matter when she was a teen - but this was ruled out. Courtney added: “It kept progressing every couple of months and then it got to a stage where I couldn’t control my body at all. It looked like an epileptic seizure.

“The only difference was that I was conscious during it. I know what’s going on around me, I know who is there and I know where I am but I just can’t control my body. At that point, they were going on for around two-and-a-half hours so the only thing I could do was call an ambulance.

“I was going in and out of A&E at least once a week but no doctor could tell me what was wrong with me. They were saying it could be epilepsy but I was tested and it was negative.” She added: “I was paying all this money to go into a doctor’s room for ten minutes for them to tell me that they didn’t know what was going on.

“It took multiple counsellors, psychologists and psychiatrists, neurologists, neuropsychologists, epilepsy examinations, and scans before I eventually got a diagnosis. I met with a woman who worked in neurology who said I had a condition called FND which was the first time I ever heard that. Even though I now have a diagnosis, there aren’t enough resources in this field.”

She continued: “The best way to explain FND is if you think about a computer, it has hardware and software. Your brain works in the same way in terms of controlling your body. The electric waves are being sent from the software in my brain but it keeps glitching once it reaches my body parts which are the hardware and that’s when the seizures start.”

FND is a condition in which there is a problem with how the brain receives and sends information to the rest of the body. Some people have symptoms for a short amount of time while others can have them for many years.

Apart from seizures, other symptoms include chronic pain, insomnia, and migraines. Courtney said there are no medications to directly treat her disorder.

She can take medication used to treat children with epilepsy when a seizure starts - but stressed this doesn’t always work and said she ended up in the hospital as recently as last week. There is no cure for FND but some people have responded well to treatments aimed at “retraining the brain”.

Courtney, who said her boyfriend Mel has been a tremendous help, revealed lack of sleep is a major trigger and said she’s started physiotherapy to strengthen her muscles because she also suffers from chronic pain. She said on average she now has a seizure every two weeks but said they can become more frequent all of a sudden. Courtney revealed: “Only last year, I ended up in the hospital for about a week and a half because I was having three seizures every single day.

When asked why she decided to speak out, Courtney explained: “FND is a lot more common than people think and I want to raise awareness. Symptoms can be different for different people and I just fear there are a lot of people out there that don’t know they have it and could end up like me waiting five years without an explanation or an answer.

“So I’m hoping if somebody sees this, they start researching the signs and symptoms because I don't want anybody to end up in the same situation that I have. There is just absolutely no support for this. I know there are a lot of other illnesses that are lacking in support in this country but for FND it’s just non-existent.

“There was just one neurologist that I saw that knew about it. More needs to be done because five years is a long time to deal with something by yourself.”

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