Our Very First Guest Blog Spot- N.E.A.D Real Life Stories

Hi there! My name is Nick and I was Diagnosed with Non Epileptic Attack Disorder in September this year after Three years of frustration and attacks. I have no idea what triggered the onset of NEAD but suspect stress, previous injuries and a culmination of bad habits. I will discuss my journey with you on this blog. I first noticed the attacks on a small scale in July 2014, at this time I was still studying my Masters degree and working with a video production company making television adverts and programs. I remember feeling unwell, very fatigued and generally under the weather.

At this time I was under pressure from several areas in my life which contributed to a bad diet, terrible sleeping habits and copious amounts of stress.

After this point the attacks were few and far between, I would have one only when my body and mind was pushed to its limits and the attacks wouldn't be anywhere as extreme or as relentless as they are now.

The first episode began on an important job for a local council, in a tight time frame and It was my responsibility to capture sound. I was holding the mic and boom (The big stick with the big microphone on the end) and could barely keep a grasp on it. I had a severe tremor, was perspiring like crazy, struggling to control my breathing and was so dizzy, to a point I was afraid I was going to smack this MP with the recording equipment! Fortunately the job was short and I was able to sit down outside and get some air for 10 minutes and the attack subsided. Unfortunately they didn’t end here and the onslaught of fresh symptoms, hospital trips and misdiagnosis began. Don't worry I will get to the dealing with the NHS and with the government with this condition at a later point, If I write about it now, I am likely to lose my train of thought. Ok so, fast forward to June 2016, I had graduated university and landed a job as a quality control technician for a local company. At this point I was still having small attacks, but on a scale that I could cope with, they didn't impact my ability to work as it was in an office and I felt somewhat comfortable. In June this was a dream job, by March 2017 I was under so much stress I wasn't sleeping at all, my mind never switched off and to top that off I was having serious trouble with management (to the point I was coming home and arguing with them in what little sleep I got) as well as working up to 60 hours a week.

This all came to a head at the end of March where my zero hours contract was terminated and I had absolutely no defense to stop it. A week after this I had my first serious seizure, I lost all control of movement, I would shake violently, cramp, feel sick, my breathing would be erratic and my diaphragm would spasm which would cause me to panic and hyperventilate which just exasperate the seizures, I would also be completely conscious through this and they could last for hours. If my jaw cramped I would lose the ability to communicate and often be on my own. For the next few months I was having these seizures every day and some days I would lose count of how many i’d had, with fresh symptoms developing. Hospitals and Doctors were sending me away with wrong diagnosis or just had no idea. This took a serious toll on my mental health as well as my body, I will discuss the effects and symptoms in detail at a later date. By August I had been in bed for almost a month and this condition has pretty much ruined my life. I have given up all my hobbies, have no money, my partner is as stressed as I am and the worst thing is that I have no answers and nothing but a number of scary theories and opinions from medical professionals, varying from brain tumors to Parkinsons and MS. I am hypersensitive to anything my body does and I am living in fear, I the situation I felt was hopeless. There is light at the end of the tunnel though! This may sound dramatic, but I sort of accepted my fate, even before the diagnosis. The condition hadn’t killed me and I certainly wasn’t going to spend anymore time letting it beat me. I had lost about 3 stone and I had given up and this wasn’t my outlook on life and never had been. A major part of working towards recovery was changing my own attitude and my own bad habits. Realising I was contributing to the problem helped reduce the number of seizures and with the help of my partner I was able to identify some of my own triggers to the disorder. I know it’s not as easy as it sounds and I am by no means the worst sufferer of this disorder but locking myself away was the worst decision I made. I changed my diet, removed all alcohol and caffeine, and avoided food and drink with artificial sweeteners. I stopped smoking my e cigarette removing nicotine. I got myself into a reasonable sleeping routine, sleeping eight hours at least with the aid of some music and relaxation techniques. I am fortunate enough to have a partner who works full time and is entirely supportive of my disorder, she has taken the financial stress which has helped towards my recovery significantly. I have however found there is a complete lack of knowledge or information for this disorder and most of the progress has been made entirely off my own back. I have yet to attend a follow up with my neurologist after the diagnosis and have been waiting for almost two months for this next step consultation. I have been treated both at work and medically as though I have severe anxiety and my attacks have been brushed off. I will say bye till next week! I will go into some further depth of the mental health issues and symptoms I developed both from the disorder, the anxiety and depression it caused and some of the problems I had with medication in my next blog post. If you have any questions or just need to talk, please don’t hesitate to get in touch. There is help out there. Nick