"Education & awareness for neurological disorders"

I have FND (Functional Neurological Disorder) and as part of this I have non epileptic seizures. The symptoms of this are similar but not identical to epileptic seizures.

I had a seizure that began with me passing out and was unable to move any of my muscles, my eyes locked shut and I couldn't speak however I was still conscious and could hear what was being said.

Being trapped in your own body is one of the most terrifying and frustrating feelings. In between these paralysed states I had convulsions where my entire body would shake and I had no control over my limbs. The ambulance was called after an hour of this cycle. The ambulance service were very quick to arrive and the two paramedics (Kevin and Steven) were incredible at making me feel safe and making me laugh whilst providing the support I needed.

When I got to A&E I was now able to speak in a stuttered manner so my mum spoke for me. When the nurse was doing my vitals we were explaining what happened and I told her it was a non epileptic seizure. The nurse then proceeded to tell me it was not a seizure and that I should choose my words more carefully when I tried to explain through very stuttered words she told me again it was not a seizure.

I was then left in my room having these fits with no type of support (eg something to calm my muscles). Before I passed out I was aiming for the bathroom in my house. I spent 4 hours waiting to go. They offered me a bedpan to pee in because of my symptoms however my body wasn't able to use it. When I told the nurse this they said that lots of people struggle and to call her if I wanted to try again. I was not offered any kind of help or support to get me to the actual bathroom. In the end it was my mum who helped me walk to the bathroom and back. Although I completely appreciate her support, she shouldn't have had to do that.

During my 6 hour stay I continued having these seizures. The nurse came and told me I was doing better just because I was able to communicate, however I had just gone from the paralysed state to the other end of the spectrum and couldn't control any of my movements. Although I did have small moments of rest these were not enough for me to recover before the next fit started. I also asked the nurse for some water, she told me she would be 10 minutes but it took an hour by which point I felt heavily dehydrated. The only reason I got water in the end was my mum went to ask again. The nurses response was I just forgot. This one incident on top of the sheer lack of understanding surrounding tic disorders made me feel I don't want to contact A&E again and will figure it out on my own. 

In summary, I feel there needs to be more training done in the area of Tic disorders such as Tourettes and FND. In my opinion because people are not educated, I felt I was treated with disrespect and with the attitude that I had no idea what I was talking about and that the nurses knew better. This is not the case. I have spoken to several different reliable sources who have in fact confirmed that in their opinion I was right.

I believe all departments should be made more aware of these disorders and at least have a basic understanding so that this does not occur for somebody else.