Hello everyone,
My name is Nick, or Shaggy (everyone but my mother calls me that. I found my way here to the forums while doing some research on my conditions. I'll start from the beginning, it goes back a number of years (sorry if this get long).
February 20, 2002 I suffered a Traumatic Brain Injury from a car crash I was in, car slid across three lanes and wrapped around a phone pole, and I woke up eight days later. Injuries from the car crash included multiple fractures in 3 ribs, a broken nose, shattered the sinuses in my forehead, I shattered my right eye orbit, my eye came part way out of the socket, and my brain partially moved into the eye socket. The outcome of my surgery and my recovery were both better than the doctors had anticipated or hoped for. Due to the brain injury I was prescribed anti-seizure meds for approximately a year after getting out of the hospital (I can't remember what meds they were off hand), right around that year mark I was diagnosed as bi-polar and prescribed Trileptal to help with mood stabilazation. I took the Trileptal more just a few month shy of 10 years, I was also on ADD meds and various anti-depressants a majority of those 10 years as well. Just shy of 10 years I was in my late 20's and decided I didn't want to be on meds anymore, so I weaned myself off all of them. Things initially went great, I felt like a whole new person, like a person I hadn't felt like in longer than I could remember, then April or May of 2016 I was in the kitchen at the apartment my fiance and I were living emptying the dishwasher, I thought I smelled something buring, then the next thing I remember I'm laying in a bed in the emergency room. ER docs checked me out said I wasn't in any life threatening danger and sent me home and gave me the number of a local neurology clinic to follow up with, which I did. Long story short to that part I found out I was having focalized Absense seizures, I was put on Topamax and told I couldn't drive until I was seizure free for 3 months. Topamax didn't work well for me, made me very angry all the time, so irronically the neurologist put me back on Trileptal, and I went without any incident until March 07, 2017. On that day my fiance and I were both getting ready for work, she heard a loud crash from the bedroom where I was getting ready, she found me unconscious on the floor, I was taken to the emergency room, diagnosed with a concussion and told "think about following up with your neurologist." I didn't trip on anything in the bedroom, I had and still have no recollection of anything leading up to the event, I just fell and hit the ground (hit my head on a space heater on the way down). Six days later my fiance came inside from taking the dog out to find me unconscious on the kitchen floor, this time I had fallen and hit my head on the corner of her step stool. I was again brought to the emergency room, and once again diagnosed with a concussion. Once again I had no recollection of events leading up to the fall. I had a different ER doc this time, who said I needed to see my neuro asap, and told me since I had 2 concussions in a six day period I couldn't work for awhile. Neurologist had me go into the hospital for a 3-day video EEG, there I was diagnosed with Psychogenic Non Epileptic Seizures (PNES) in addition to Epilepsy. I was given a treatment plan, and now see many additional doctors. Since those two falls I have been have PNES seizures or Non Epileptic Attacks that generally manifest as Absence seizures multiple times a day everyday, then in May I began having what appear to be Grand Mal or Generalized Tonic Clonic seizures, but those have never been captured on an EEG, so I'm told they may or may not be organic or they could be PNES, which can manifest in many different ways. Since I started having the episodes that resemble Grand Mals my neurologist refered me to the Mayo Clinic, where I did a video EEG for 5 days at the end of July into early August this year. The episodes resembling Grand Mals were not captured during my stay there, but the neurologists there concluded that I am having focalized seizures due to my brain injury all those years ago that is being controlled with medication, and I am also having Non Epileptic Seizures which they said is like PTSD that shows up in the form of seizures. To this day I continue having non epileptic seizures multiple times a day, they manifest as absence seizures, I have anywhere between 10 and 20 a day, and every 7-10 days I have one that resembles a grand mal. They have additionally put me on Gabapentin, they hope it will reduce some of the anxiety in my life, hopefully causing me to have less non epileptic attacks.
I am so sorry that this is so long. I'm sure there is a few gaps in there, and parts that don't make sense, I would be happy to answer any questions anyone has about my journey with epilepsy and PNES
My name is Nick, or Shaggy (everyone but my mother calls me that. I found my way here to the forums while doing some research on my conditions. I'll start from the beginning, it goes back a number of years (sorry if this get long).
February 20, 2002 I suffered a Traumatic Brain Injury from a car crash I was in, car slid across three lanes and wrapped around a phone pole, and I woke up eight days later. Injuries from the car crash included multiple fractures in 3 ribs, a broken nose, shattered the sinuses in my forehead, I shattered my right eye orbit, my eye came part way out of the socket, and my brain partially moved into the eye socket. The outcome of my surgery and my recovery were both better than the doctors had anticipated or hoped for. Due to the brain injury I was prescribed anti-seizure meds for approximately a year after getting out of the hospital (I can't remember what meds they were off hand), right around that year mark I was diagnosed as bi-polar and prescribed Trileptal to help with mood stabilazation. I took the Trileptal more just a few month shy of 10 years, I was also on ADD meds and various anti-depressants a majority of those 10 years as well. Just shy of 10 years I was in my late 20's and decided I didn't want to be on meds anymore, so I weaned myself off all of them. Things initially went great, I felt like a whole new person, like a person I hadn't felt like in longer than I could remember, then April or May of 2016 I was in the kitchen at the apartment my fiance and I were living emptying the dishwasher, I thought I smelled something buring, then the next thing I remember I'm laying in a bed in the emergency room. ER docs checked me out said I wasn't in any life threatening danger and sent me home and gave me the number of a local neurology clinic to follow up with, which I did. Long story short to that part I found out I was having focalized Absense seizures, I was put on Topamax and told I couldn't drive until I was seizure free for 3 months. Topamax didn't work well for me, made me very angry all the time, so irronically the neurologist put me back on Trileptal, and I went without any incident until March 07, 2017. On that day my fiance and I were both getting ready for work, she heard a loud crash from the bedroom where I was getting ready, she found me unconscious on the floor, I was taken to the emergency room, diagnosed with a concussion and told "think about following up with your neurologist." I didn't trip on anything in the bedroom, I had and still have no recollection of anything leading up to the event, I just fell and hit the ground (hit my head on a space heater on the way down). Six days later my fiance came inside from taking the dog out to find me unconscious on the kitchen floor, this time I had fallen and hit my head on the corner of her step stool. I was again brought to the emergency room, and once again diagnosed with a concussion. Once again I had no recollection of events leading up to the fall. I had a different ER doc this time, who said I needed to see my neuro asap, and told me since I had 2 concussions in a six day period I couldn't work for awhile. Neurologist had me go into the hospital for a 3-day video EEG, there I was diagnosed with Psychogenic Non Epileptic Seizures (PNES) in addition to Epilepsy. I was given a treatment plan, and now see many additional doctors. Since those two falls I have been have PNES seizures or Non Epileptic Attacks that generally manifest as Absence seizures multiple times a day everyday, then in May I began having what appear to be Grand Mal or Generalized Tonic Clonic seizures, but those have never been captured on an EEG, so I'm told they may or may not be organic or they could be PNES, which can manifest in many different ways. Since I started having the episodes that resemble Grand Mals my neurologist refered me to the Mayo Clinic, where I did a video EEG for 5 days at the end of July into early August this year. The episodes resembling Grand Mals were not captured during my stay there, but the neurologists there concluded that I am having focalized seizures due to my brain injury all those years ago that is being controlled with medication, and I am also having Non Epileptic Seizures which they said is like PTSD that shows up in the form of seizures. To this day I continue having non epileptic seizures multiple times a day, they manifest as absence seizures, I have anywhere between 10 and 20 a day, and every 7-10 days I have one that resembles a grand mal. They have additionally put me on Gabapentin, they hope it will reduce some of the anxiety in my life, hopefully causing me to have less non epileptic attacks.
I am so sorry that this is so long. I'm sure there is a few gaps in there, and parts that don't make sense, I would be happy to answer any questions anyone has about my journey with epilepsy and PNES
