Rob Johnson
Traumatic Brain Injury (acquired in youth) - PLMD - CVA
My head traumas began at an early age. Growing up on a Farm and Ranch in rural Montana. I experienced a violent childhood working with undomesticated 1200 lbs. beef cattle. Attacks were similar to a rodeo bull and I was knocked unconscious 3 times from age 7-10.
I played football became known as the hardest hitter around. I also engaged in fist fighting in our rural farming society, a required skill. There are a numerous scars on my skull some including stiches. I likely had numerous concussions.
In July of 2012 my wife noticed I began kicking drastically during my sleep. My wife is a Medical Doctor so she setup a sleep study. The test showed I moved 250 times in and came to full consciousness 50 times.
I was diagnosed with Periodic Limb Movement Disorder (PLMD) and put on Mirapex.
Since that time my wife can no longer sleep in the same bed with me. Sleep is still very difficult to achieve. I could only get one 1-4 hours of sleep at night in 2012-13. Instead of staying in bed aching and staring at the ceiling. I would get up and go to work.
I began having a lot of physical pain. In May of 2013 I started slurring my speech at work. My wife told me to go to the emergency room. I had an MRI on my brain, however the Radiologist missed an Ischemic Stroke about the size a pinky in the back of my brain. In December another Radiologist read the MRI and found the infarction within the Cerebellum Bilateral.
He asked for another MRI were my left Vertebral Artery was no longer visible. Indications I had a stroke as the Vertebral Artery closes 25% of the time following a stroke. In 2013 I was diagnosed to have Fibromyalgia with Sensory Overload. My sleep was limited to 1-4 hours a night. My pain levels were high, and I happen to possess a high pain tolerance. I’ve passed a 5mm kidney stone at job without stopping work.
I started losing weight, 25 lbs. of muscle. I was in good shape prior to this as I continually exercised. My wife was still concerned and sent me to another Doctor. A former Mayo clinic pain physician was sure I had ALS and referred me to Mayo’s Neurological center in Rochester MN, ASAP.
I was able to get into the Mayo clinic in Rochester, MN in December of 2013. At Mayo they;
- Found I did not have ALS
- Found I had a stroke seen in the May 2013 MRI
- Confirmed I had Fibromyalgia and PLMD
- Conducted another sleep study while on medication showing PLMD with no N3 stage of sleep.
- A new MRI could not see the Left Ventricle visible in the May 2013 MRI
I began leaving work when sick with too much pain and started regaining weight.
In March of 2013 I suddenly lost feeling and control of my right leg. I had an MRI of my lower back at Spine One, with normal results. Another MRI of brain could not find the Left Ventricle. A second MRI was taken contrast. They found the Left Ventricle. It was smaller since 2013 May MRI when it was visible without contrast.
Due to PLMD I’ve had numerous surgeries. Before using a mouth guard I chipped a tooth, and tore my jaw muscle in 2014. In July of 2014 I tore my knee in my sleep. I needed knee surgery. My surgery removed 5 cm bursa, removed meniscus, and removed torn cartilage on Femur. Tore my abdomen (surgery 4-20-15), tore my neck and bulging disk, (surgery 8-2-15).
I experienced chest pain in 2014 with 2 borderline EKG’s. In October of 2014 I had a Mental Break Down. My wife sent me to the Emergency Room for suicide prevention. They assigned me to Behavior Center for severe depression.
I am no longer able to work with my health conditions. Leaving behind a high paying jobs in the 6 figures that I really enjoyed were I as able to save for retirement. Attempts to work exacerbate my conditions causing severe headaches and body pain.
I believe the onset of my disability began with PLMD, or REM behavior disorder (RBD) acting out dreams. I wake feeling normal but as the day progressed I begin to experience a migraine that spreads to my nervous system throughout my body. The pain is similar to passing kidney stones.
The only fix for my symptoms is sleep. I spend my days locked in my bedroom, meditating, or in a hot bath. Every attempt to avoid Noise / Visual Movement / Stress are taken so to avoid excruciating pain. Sleep today comes in the form of 150 – 200 mg of Seroquel (enough to put down a small horse, ha).
I’ve found I appear to have a disorder near the thalamus? Some research call this a Gateway issue between the brain and the nervous system. At night my Gatekeeper fails to paralyze my body during sleep so my body is not actually running, etc. or acting out my dreams. During the day the Gatekeeper fails to protect my brain from overstimulation. This results in an experience similar to staring at strobe light with blasting music.
I recently visited a Medical doctor at Stanford University. He was involved in a study using MRI on patients with Sensory Overload. “Brain scans show that people with the pain disorder fibromyalgia react differently to what others would consider non-painful sights and sounds, new research suggests.”
http://www.reuters.com/article/us-health-fibromyalgia-brain-idUSKBN0HE28O20140919
Another study about this:
http://wagerlab.colorado.edu/files/papers/LopezSola2014.pdf