Months have passed since I last blogged. My goal in writing this blog was to inspire other survivors, so I wanted to keep it positive. Know what? Recently, my life hasn’t been easy and have little positive to report.
Migraines. It all starts and ends with pain. Over the past three months, my migraines increased in number, to about 2-3 a week. Summer was here! Instead of hiding away in my house, I wanted to be outside. I increased my activity. After work, I napped, then frequently took Scout to the park to either go for a walk or run. I also increased just life activities, such as training Scout in stores or going shopping or an occasional treat of ice cream At Dairy Queen. More pain, more headaches, more fatigue… More sleeping. More medication, both to treat the migraines and to try to prevent them. My sensory sensitivity increased at the same time. I started retreating more Inside. I still took Scout to the park. It is quiet there. But, I stopped shopping. I only went when the refrigerator was empty, and then only to get the bare minimum I needed to survive. Work and home…. And run. My life. It is very narrow. Again, lived in a haze of pain, medication, and fatigue.
Three weeks ago, I had another neuropsychiatric examination. My last one was six months after the injury. The exam did not go well. I had a 35% loss in cognitive function across all areas. This is not indicative of TBI. Generally, individuals with TBI either improve or stay the same. According to my health care provider, these scores mean one of four things: 1. Malingering, 2. Psychosis, 3. Early dementia, in my case cause by repeated head trauma, or 4. Topamax toxicity.
They ruled out malingering and psychosis. Honestly, even the discussion of malingering annoyed me. I am so tired of people not taking me seriously. I had an ER discharge me with unequal pupils when I was first injured, telling me my symptoms were due to hydrocodone. I was not on that high a dose. And it does NOT cause unequal pupils anyway. To be fair, it was ruled out quickly.
Chronic Traumatic Encephalopathy (CTE) has been in the news more frequently recently, due to the number of former professional athletes identified as having the syndrome. CTE is a disease process found in individuals that have suffered repetitive traumatic brain injuries by acceleration and deceleration and asscociated damage to the axons. The injuries can be us concussive in nature. The signs and symptoms of CTE include changes in mood (depression, apathy, suicidal ideation, anxiety, irritability), difficulty concentrating, loss of cognition (concentration, memory loss, executive dysfunction), behavioral issues ( acting out in anger, aggression, spending), motor disturbance ( balance issues, gait problems). CTE symptoms get worse as the disease progresses. The disease is only diagnosed upon the death of the individual during autopsy. What is truly frightening is how many of these symptoms I am experiencing. The most recent accident is my fourth TBI requiring medical treatment. I am not certain how many undetected injuries I had while participating in sports and military service. I remember “having my bell rung” several times and continuing in the game. More on CTE: CTE Wikipedia
Topamax toxicity is another possibility. I have been taking it to control migraines. The list of side effects include: tiredness, dizziness, coordination problems, speech problems, changes in vision and sensory changes, increased body temperature, decreased sweating, confusion, slowed thinking, trouble concentrating, problems with speech or balance, numbing or tingling in feet or hands, and other side effects. Confusion, slowed thinking, trouble finding words, fatigue, tingling in hands and feet…..Check. So, which prize do I win? CTE or toxicity? Try the simple answer first. I am titrating off the Topamax. In four months, they will repeat the neuropsychiatric exam.
We now have to find a migraine control medication that doesn’t turn me into a zombie or drop my blood pressure into the toilet.
Do you remember those inflatable punching clowns? Knock them down and they bounce back up. I am that clown.
Talisien is being squished