When I Found Out My Seizures Weren't Epilepsy
Since I had my brain tumor removed in 2011, I have been on anti-epileptic medication as a prophylactic measure. I had several small tremor incidents, so the dose was increased over time. Over the last five years I have been told I am epileptic and then not epileptic.
In October 2015, I attended four very cognitively challenging conferences and a fun run in the space of a week. As I live far enough out of city to make travel time to these events difficult at best, I booked a hotel in the area. I knew I needed to manage my sleep well or I would not be well.
I made it through to the end of the fourth conference without incident despite late nights, early mornings and information overload. I went to the Fun Run on the Saturday morning and was not feeling myself. As the day went on I felt less and less able to cope and was changing my plans to get home. First I decided I would be OK and catch public transport, but as time went on I felt I would not be able to manage that and should probably catch a cab. By the end of the day I didn’t think I would be able to manage that either. By the end of the event I had to go and lay down on the grass and an ambulance was called. I felt rather silly that there was so much fuss and an ambulance involved. I was just feeling “wrong;” I didn’t feel like I was ill enough to warrant all of this.
We made it into the emergency bay and I was wheeled in to wait for triage and be allocated a bed. Before any of that had a chance to happen, the paramedic at the end of the stretcher I was on called out “She is seizing!” What happened next was all a bit of a blur. I went into a full tonic clonic seizure and was rushed into acute care, then straight into resuscitation. There were lots of lights and people. Someone was calling my name and asking me to open my eyes. I was being hooked up to more monitors, IV lines were being put in, my clothes were off and a gown was on. From what I was told later, I was going to be intubated.
Over the course of the next few hours while I was in acute care, my brother came up to see me. I thought I had one seizure in the cubicle while he was there, but apparently it was closer to five and I was whizzed off to resuscitation a few times. By the time I was moved up to the ward I had a total of 12 seizures. This had never happened to me before. I was exhausted and slept 10 hours straight in the hospital, through hourly observations, completely exhausted. I was kept in hospital for a few days and then sent home with a request form for an MRI and a follow-up with my doctor. The CT scan they did in emergency was clear of anything nasty.
In March 2016 I was at university and had just finished my last lecture for the day. Before I made it much further than the hall I started having a seizure. A friend and my lecturer stayed with me while an ambulance was called. By the time the ambulance arrived to take me to the hospital I had six seizures in total in the hall. I had another in the ambulance and seven more in emergency. I spent some time in resuscitation and was taken up to the ward when I was stable. The following morning I had four more seizures. Two of those resulted in codes.
In February of 2019 I went in for a minor day surgery and ended up in ICU. I was in recovery after my surgery and started seizing. I was admitted to ICU where I stayed and was monitored for two days while the episodes continued. An EEG was done while I was in ICU and I was moved to the neurology ward. At the end of the week I was released without a clear diagnosis and my own neurologist having a contradictory opinion to the neurologist who had admitted me to the ward.
A week later I was having an iron infusion in my doctor’s office and had more of these episodes. An ambulance was called and I was taken back to the same hospital I had been in the week before. I spent a few days in hospital again with more testing going on. Thursday night I coded twice and Friday night I coded again. I was released to go home on Saturday as I had an appointment with my neurologist on the following Monday.
That Monday, my neurologist gave a diagnosis. I do not have epilepsy. I do have seizures though. They are called dissociative seizures. I was thrilled to finally know what was really going on! When I got home I went through all the literature that had been given to me and visited the website they suggested.
As I understand it, a non-epileptic seizure attack or dissociative seizures as they are also known, are part of a broader group called functional neurological disorders or conversion disorder. These episodes can be described somewhat like a panic attack or a migraine. It is a dysfunction of the nervous system. Nothing that shows up on scans or blood work shows that you have them, but they are very real and have a significant impact. Dissociative seizures can be medically or psychologically based, or both. In my case they are brought on by exhaustion and stress.
Now that I have the diagnosis and am armed with information about what my seizures they are and how they work, I can move on with my life with strategies in place to manage them. As a team, my neurologist, doctor, physiotherapist, psychologist and I are finding ways to manage stress and make sure that I am getting enough quality rest. With these plans and tools in place, I can hopefully get through without having another episode. If it does happen I will know what it is and how to deal with it.
Don’t be afraid of diagnosis. Try not to feel angry or upset if there is or seems to be a psychological aspect to your diagnosis. It doesn’t mean you are “crazy,” and it doesn’t mean you are “faking it.” It is what it is, and knowing means you can work with your team to get it under control, so you can get back on track and moving forward.
Getty image by Luaeva.