HELP RAISE AWARENESS
NICKI
Working full time, doing crazy shifts I had a ‘normal’, hectic life. I’d play in a band in front of big crowds. I’d recently moved in with my partner and my daughter liked him a lot. One day I fainted at work, a couple of days later I fainted again. These faints were becoming more frequent. I decided to get checked out. As soon as I walked into the doctors I had a tremendous shooting pain through my right temple and I felt as though I had just stepped off a roller-coaster. Next thing I knew I was being starred at and had kind of wet myself! I had had my first seizure. The doctors said it may have been a faint with a shake?! They sent me home. I had 5 more that day and my partner ended up calling an ambulance. The hospital had no idea what was wrong with me. I was sent home with the aftercare advice being ‘just a bit of tlc’. After all the standard tests I was told I had non epileptic attack disorder (FND). The only medical advice I was repeatedly given was ‘oh well… At least it’s not epilepsy’. OK that might be true, but at least you can control most epilepsy! I tried to just plod along, but ended up having to quit my job. I worked with vulnerable young people, which was quite dangerous at times and so couldn’t risk having a seizure there. Every day I am having between 4-22 seizures. As I started to lose all confidence about going out alone, meeting new people and basically having any quality of basic life I fell pregnant. I had tried to carry on the gigs, but the fear of having a seizure in front of everyone was really hard to manage. There were times that I had to run off stage mid-sentence for a sneaky spazz out!! Yep it was probably even more stupid that it sounds. My partner managed to talk me round and vowed to help me with the baby. Realistically my partner works 50-60 hours a week, so it couldn’t work! Never the less I continued with the pregnancy. At 22 weeks pregnant I had a seizure on the stairs and fell all the way down. I ended up bleeding down below as well as smashing my face and legs. The hospital were shocked at how I was just living /existing like that!! The hospital got in touch with adult social services, they didn’t take my case as… ‘I wasn’t pregnant enough!!’ anyway I’m ranting a bit! Since the daily seizures I can suffer with temporary paralysis, loss of vision, excruciating pain, vertigo, and exhaustion. I’m only 29 and have the quality of life of an 80 yr old. People (including health professionals) have never heard of this condition! I try so hard not to let it beat me!!! My baby is now 4 months old and I still have multiple seizures a day. I just do my best to get on with it. I have put myself on a clinical trial, so hopefully things will improve. I feel as though I have fallen from Grace and that I’m in a never ending black hole. Please help raise awareness! I’ve come across neurologists that have never bloody heard of it before! (That doesn’t fill you with confidence!!!! ) Xx