Young Man with NORSE Experiences Sudden Seizures And Long Rehabilitation

By Luke Boulianne

It began on January 11th, 2014, shortly after returning from a ski trip in Quebec. I immediately began feeling ill and showing flu like symptoms. I couldn’t keep any liquids down. I became incoherent, and extremely delirious to the point that my mother was forced to call an ambulance.

Unfortunately, these paramedics were inexperienced and refused to walk me down my stairs, as it’s apparently against code to remove a patient from their residence against their will. They took it upon themselves to call the police, and I was met by two police officers at the door. Being a Friday night, they immediately assumed I was on drugs, and being rather large for my height (I was 5’9”, 190l lbs of pure muscle), they didn’t hesitate to tackle me, taser me, cuff me, and force me into the ambulance.

I was rushed to Victoria Hospital, where me, my family and all my friends who were on the trip were vaccinated against meningitis, which was my initial diagnosis. However, I soon began having uncontrollable tonic-clonic seizures, and my diagnosis was changed to N.O.R.S.E., which stands for New Onset Refractory Status Epilepticus.

At the time, the only way to diagnose someone with this disease, as apposed to any other ones, was to rule out any other cause for the spontaneous imitation of the seizures. To stop my uncontrollable grand mals, I was transferred to UH were I was induced into a coma using Propofol, and later, to maintain this state, using isoflurane, However the usage of this drug was stopped as it was deemed dangerous and other options became available. During my coma, that lasted four months, I had consistent seizures and had a constant flu and high temperature and had to have a cooling blanket on me at all times. I underwent seven rounds of plasmapheresis, IVIG, had to eat through a feeding tube, and when my movements became more controllable, I was given a tracheotomy.

Upon awakening, I had electrodes attached to my head a series of times, and underwent a bunch of radio active tests (MRI’s, EECs, Cat Scans). It became clear that I had lost a large portion of my heart muscle, and was therefore put on heart medications. I immediately began trying a series of different combinations of drugs, and it was a series of trials and errors to find the correct ones that would result in the cessation of my seizures, and due to this, I had a series of negative side affects.

One example of this was the inability of sleep, as every time I closed my eyes I would see colors. Another is the erratic movement of my left arm while watching T.V. At one point I had my trachea removed, but after the repeated build up scar tissue, I was sent to Victoria Hospital to have a Tracheotomy. While at Victoria Hospital, my feeding tube was accidentally removed, and while having it replaced, my medication routine was interrupted, and massive seizures immediately followed. This proved that I must maintain a tight schedule of my medication in order to avoid to all seizures.

After about nine months, I was sent to Parkwood Institute to begin rehabilitation, learning how walk, take basic speech therapy, and occupational therapy. After four months, I was sent to the NRC (Neuro Rehab Centre) where I began a more rigorous therapy, I learned how to eat without my feeding tube, I worked on my speech, how to walk completely without the usage of my wheelchair, and I also began to rebuild all the muscle I had previously lost (around 70 lbs).

I was also able to go home on weekends and visit friends, and this quickly turned out to be a blessing as much as it was a curse, because while it was nice to see everyone again, it was depressing to hear them make plans about events I could not attend. After a further four months, I was released from the NRC, and returned home full time, although I continued speech and occupational therapy routinely at Parkwood, and eventually began a program called BrainX and began a back-to-school course. I began to gain further independence, although without a licensee to drive and having my life revolve around my taking my meds at particular times, this was rather limited. I quickly learned what my limitations were, and I realized I must adapt to my new lifestyle slowly, and try not rush my recovery. I rapidly discovered what my ‘auras’ were a precursor to a seizure, or a ‘warning sign’, and they evolved from a ringing in my right ear to seeing colors. While these auras were extremely annoying at times, they helped me avoid many seizures. For example, if I was going to intense in the gymnasium or I was spending to much time in direct sunlight, I would experience an aura and have the opportunity to medicate myself to suspend the oncoming seizure.

I would like to connect with other patients who have similar stories as well as those who wish to hear more about mine. I can be reached at [email protected]