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STARS Patient Information

Nicole’s story

My name is Nicole and I am 20 years old. Since the age of 15 years old I have suffered with chronic health issues (asthma, multiple allergies) but nothing could have prepared me for what happened during December 2013.

I had been admitted to hospital following an asthma attack. I’d been in the hospital for two nights and had begun to feel a lot better breathing wise. I’d eaten my dinner and was waiting for my mum to come visit me. I started to feel unwell. By the time my mum came in she noted my behaviour seemed strange. I was talking louder and faster than normal, I seemed extremely spaced out and not completely with it. I felt horrible, sick, dizzy, hot and I could feel my heart racing. I lay down in bed and felt everything spinning around me. I began crying and screaming that I was going to pass out. The next thing I remember is waking up with an IV line in my foot and my mum rushing back to my bedside. She said that I’d fallen unconscious and began to have what looked a lot like a seizure. They’d called the nurse who pulled the emergency buzzer above the bed and doctors came rushing to my bedside. They brought the crash cart and began giving me oxygen. After 15-20 minutes I came fully back around but my heart rate was still extremely high at about 180 beats per minute (a normal heart rate should not be above 100 beats per minute). I had to be reviewed by the intensive care and high dependency doctors as they were worried about my high heart rate. Luckily my heart rate began to slowly come down. I have been through a lot medically but I have to admit that was the scariest thing I have been through.

Since having my first seizure I have suffered three other seizures, all of which have caused me to be rushed to hospital with an extremely fast heart rate and no recollection of what happened during my seizure. My seizures have been witnessed by family, friends and even my boyfriend. I am unaware of what goes on but I can imagine it is horrible for anyone watching as they cannot do anything to stop the seizure. All they can do is watch and wait while it stops.

I have been seen by two neurologists and have also had an EEG. My EEG revealed that I had no seizure activity while having it done and it was determined that my seizures were very unlikely to be caused by epilepsy. My first neurologist dismissed my case saying that it was an isolated seizure and would most likely not happen again. As I suffered another three seizures I was sent back to see a different neurologist. They were really lovely and sat talking with me for an hour about what had been happening and asked about what happened during my seizures, what I could remember about them etc. After listening to everything she said my seizures were very unlikely to be epileptic due to the amount I had suffered. She said my seizures were known as reflex anoxic seizures (RAS). She went on to explain that it was a severe form of syncope (fainting) which was caused by the heart stopping for milliseconds-seconds at a time and in turn causing the brain to be deprived of oxygen. The deprivation of oxygen is what caused the seizures and the heart stopping and re-starting was what was causing my heart to race when I was coming round from my seizures.

When someone suffers a reflex anoxic seizure an ambulance does not always have to be called but due to my other health conditions, it has been advised an ambulance should always be called as the stoppage of breathing could potentially bring on a life-threatening asthma attack.

Reflex anoxic seizures are something I would definitely not wish upon anyone. They are extremely frightening to go through but I am beginning to come to terms with what is happening to my body when it goes through a seizure. I have come up with some things to do if I begin to feel like I am going to suffer a seizure such as lying down, making sure someone is aware that I am feeling unwell, turning onto my side, moving away from anything potentially dangerous etc. Reflex anoxic seizures can affect me to a certain degree everyday. However they will not take over my life. I am just like anyone else my age. I attend university, I like spending time with my family and friends, I like shopping and going out…my life just has a few extras involved.

Nicole

East Lothian, Scotland


Get in touch for more help and information

+44 (0) 1789 867 503info@stars.org.uk

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