I first started having random drop attacks in January 2015. I would feel myself falling and lay on the floor unable to open my eyes, communicate, or move voluntarily.
I was in college and going through an incredibly stressful time at home so I automatically assumed it must be stress related. I just felt like I had no energy at all and was getting continual chest pain, palpitations and extreme panic attacks. After about 3 of these attacks at college an ambulance was called. I remember hearing the paramedics and feel them doing their checks. It felt so surreal. I was taken to hospital and was told I was going to be admitted overnight. I had a few stays like that over the following months.
Meanwhile my life felt completely out of control and the drop attacks turned into falling and having uncontrollable, painful convulsions. I became known as a frequent flyer of the ED and very few medical professionals seemed to believe my symptoms were real. I was humiliated by paramedics telling bystanders and any support workers who were with me at the time that “she’s faking it, people do this all the time for the drama.” And it just kept getting worse.
Finally I was diagnosed with Non Epileptic Attack Disorder or Dissociative Seizures which I later learned was part of Functional Neurological Disorder.
Since the diagnosis I’ve not received any therapy targeted at the seizures or the traumas that potentially caused the seizures. I avoid being taken to hospital as much as possible and I sometimes go months where the seizures go dormant and instead I have randomised muscle twitches and weakness. The fatigue is always present and very frustrating. And I get a lot of joint problems. I dream of a day where even my gp knows of and understands this condition. Where all medical staff have appropriate training of this condition. Where I don’t have to go to the ED knowing that no one will believe me or take me seriously.
Most of all I wish for a day when we finally find an effective treatment and hopefully cure to this disorder that steals too many lives.
I do believe there is hope for a better quality of life with this condition, and I’ve still achieved a lot since my diagnosis thanks to supportive friends and family.
By Nina, Kent