Progress

I came across a running log that I kept when I first starting running after my TBI. Looking at the comments, such as “felt like crap, dizzy, migraine, fell three times” I noticed just how much better I am doing physically. At one point, I even “accepted” that I was going to be overweight and never get back to my “running weight.” I seriously considered quitting, just giving up on running. Today, I ran out at the lake. I compared my time to my previous “best.” I was 5:45 faster! I realized how that loop is a comfortable run now, no longer something close to impossible. I’m no longer exhausted at the end. I now have to run it faster, add distance, or do hill repeats or fartlek for it to be difficult. Unless, I am having bad day- then it’s just as gruesome as before! I also lost 20 pounds and am close to my marathon weight.

Evidently, I was having serious side effects with Topamax. I am totally off the medication for just over a week. My thought process is faster and I’m talking more smoothly. My balance is even improving. I don’t think I need to worry about CTE anymore! What I am experiencing still is more inline to how I was before I started the medication. I still have post-concussive issues. Being in public is still like walking around with no skin and super sensitive hearing. In other words, sensory overload is making its continued presence known.

I enjoy my afternoon nap daily. The rest period is needed to let my brain off load all the stimulation. Today, Brigid had me all to herself as Scout was at puppy day care. She tramped and circled on my chest, eventually gracefully curling up on me, sighing in contentment, and purring. I gently stroked her face, falling asleep to a warm, purring, cat. When I woke up, she was nestled next to me. I stayed in bed, reading. It is so peaceful cuddling with a warm, contented cat. Brigid is special. She connects to me spiritually and emotionally. Whenever I have a nightmare, she is there, nudging me awake. Then, she gives head butts, strokes, and purrs until I fall back to sleep. Scout is usually put like a light. He may be my service dog, and a wonderful help, but he sleeps like a log. He also snores. He is not as connected in that way.

Scout is curled up, asleep, at my feet. He is exhausted from a day of play and his bath.
Kaliyah and Bobby are running about, wrestling, and periodically pouncing on Brigid. The kitten watches them with interest, joining in the game of chase following a pounce.
It is a peaceful ending to a good day.

Update

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It’s late and I can’t sleep. I have been titrating off the Topamax for about 2.5 weeks now. I notice my speech is improving in that I am not losing words as much. My balance is also a little better. I will be totally off in three more days. I have hope that since I am improving on lower doses that most of my symptoms will clear once the drug is totally out of my system. Or at least improve to my baseline post-TBI norm. The migraines enjoy the lesser dosage. They returned to 2-3 a week. The verapamil hasn’t started working yet. The joys of TBI: the gift never stops giving.

My mood lately is a bit depressed. I find myself thinking in terms of Before and After. My life right now seems directionless and without purpose. I still work part time and see very few clients, a situation my supervisor keeps saying will change but never does. Perhaps I truly have lost my ability to work clinically. Maybe she was getting complaints. I don’t know. The Army Reserve finally retired me medically. That’s over. I miss little freedoms. Sometimes I just want to get into my car and go for a drive to the mountains to do a trail run. Or even have the ability to trail run. Or be able to sign up for a marathon next month, knowing I’m in shape for it and not having to worry about who will drive me and if I’ll get overstimulated during the race. Hell, I can’t even do the training for a full marathon yet, never mind run one. Before and After.

On the other hand, I completed the Missoula Half Marathon this summer. I managed the overstimulation by using ear plugs, a hat, and dark glasses. I carried my own water and nutrition, so I didn’t have to try to make sense of the confusion of the aid stations. It is a beautiful course, too. Completing the run was a big accomplishment. I did face plant twice. Heh. Took home some Missoula road in my knees.
I run well in the familiarity of my nice, quiet park. There are several different distance options to run, depending on how I feel. I have a friend who is usually willing to drive me to out of town runs.

With any medical condition, there are times where hope is in small supply. Take it one day at a time and don’t give up.

Out of Control

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.

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Talisien is being squished