STARS Patient Information

Steve's story

My name is Steve, I'm 29 years old, live in Walsall and I have Reflex Anoxic Seizures.

It all started many, many moons ago, back when I was a child (around five years old). I was watching a documentary on the TV about eye surgery which showed a scalpel and a surgeon performing an operation. I remember sitting there feeling my toes tingle. The next thing I knew I was outside on the patio waking up and feeling horrible. I was very confused and so were my parents at the time.

When I turned eight and was in Junior School, something happened that changed my life. It was time for the MMR jabs; my friends and I were lining up acting like we were not phased one bit. It was my turn next, my sleeve was rolled up, my arm was wiped and then a sudden shooting pain and before I knew it I was walking back to class. The lingering feeling and all my friends talking about it got me thinking more and more in my class. All of a sudden my feet started to tingle; I thought to myself “I have experienced this before”. The feeling then crept up my legs numbing my lower half, I started to sweat and feel very nauseous. I stood up out of my chair and shouted "Sir, I feel sick", my teacher at the time said "right, go to the toilet then Steven”.

I started walking to the door, feeling dizzy and noticed my vision began to go ‘hexagon’ shaped. I opened the door and almost got to the stairs, then a sudden life draining feeling took over, my vision went into tunnel vision, I could not breathe, my whole body went numb. I reached my hand out to hold onto the stairs, and then all I can remember was black.

I came around but not fully. I felt I had run the marathon. I had no energy, I felt awful, and words still to this day cannot describe it. I was surrounded by two nurses and paramedics. I thought to myself “what is going on?” I could only just about make out their voices even though they were right next to me. I was then given an injection and I did not feel anything. It was not long until I felt awful again. One of the nurses said "you’re a good boy hang on". At this point I thought she was an angel who had come to save me. The nurse then turned round and said "ok Steven, this is going to hurt a little" and I was given another injection in my arm. It took about five seconds and my energy came flooding back to me. Five minutes later I was in a wheel chair talking about if I was going to become famous now?

I later found out the doctors thought I had an allergic reaction to the MMR jab. All was forgotten.

Fast forward and I'm now eleven years old. I happened to break my wrist and it had come to the day of having the cast removed. A nurse came over and pulled out a circular saw; I was instantly scared stiff, but the nurse calmed me down. As she started to cut the cast of me, it happened again. I woke up in a bed with four nurses around me. This time they wanted to know what happened and took two blood tests, only for me to have that same feeling around eight times during the process. It was a long day!

Two weeks later I was seeing a specialist in Walsall who was there at the time who said she had a feeling as to what the problem may be. She was very helpful and referred me to Birmingham Children's Hospital. When I arrived there was a table waiting for me, so they could perform a TTT (Tilt Table Test). While having the TTT I felt the feeling again. I said "It is coming, stop stop now." As the nurse lowered the table I felt better. Once the recordings had been looked at they explained to my mother what the diagnosis was…reflex anoxic seizures.

I don’t believe anyone would say it is easy; it is very hard. One thing I have learnt over the years is to not let it stop me. It is a hurdle but I don't let it stop me trying new things. STARS has helped me a lot in finding people like myself, and learning how people cope. Many years ago, Trudie herself helped me by giving me a lot of advice.

Just remember there are many people struggling with RAS, we have to learn to overcome it and live life like we should.



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+44 (0) 1789 867


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