It’s All a Matter of Perspective

To a novice runner, ten miles is a long distance.  Perhaps it even seems insurmountable.  To a marathon runner, ten miles is a “short” training run.  As the runner gains fitness and experience, longer distances become easier to complete.  The challenge then may shift to running faster or running even longer.  At this point in my TBI recovery, 1  mile is a short run.  I found out today that “short” is a matter of perspective.

It started as a routine run; my favorite park, a familiar five mile loop.  The weather was nice for late winter.  It was a warm day, about 56 degrees, and overcast.  It was a nice break from temperatures below freezing with brisk breezes biting at any exposed skin.  All went well, I enjoyed seeing the creek, flooded and muddy with early spring runoff.  The birds were singing for mates and defending territory.  It was quiet and peaceful.  Until the wheels came off with a mile left.

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It started as a sparkly flashing light in my vision.  It was actually almost pretty, if it weren’t that I knew what it meant.  It was an aura.  I was about to be visited by the migraine fairy.  Fairy?  Maybe ogre is a better choice of words.  I had a decision to make.  And, no matter what I decided, I was in for a painful experience. 

It takes me about 9 minutes to run a mile, depending on hills, weather, and what type of workout I am doing.  Some runs call for a faster pace.  Walking, I can cover the distance in around 15-18 minutes.  After an aura sets in, I have about 15-20 minutes until the onset of pain.  The choice: do I run in an attempt to get to my car, and more importantly, the Maxalt in the car before the pain hits?  It’s a gamble.  Physical activity makes migraines worse.  Being an Idiot (seriously, I am part of the Idiots Running Club), I chose to run.  However, I did slow my pace slightly.

It wasn’t the right choice.  The migraine hit with a vengeance about two minutes after my aura started.  It was a new record!  My pain has never arrived so fast!  At least I set some sort of record today.  The pain was like a heated ice pick being driven into my left eye and temple, throbbing with every strike of the “hammer.” And every strike of my foot on the trail.  I came to an abrupt stop in the trail, clamping my hand to my head in a useless attempt to stave off the pain.  I dropped to my knees and gave my breakfast back to the earth.  That wasn’t a good sign.  I slowly get to my feet and walk toward the car.

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Now, I have the same decision again.  I have a little over a half-mile to get to the car.  Do I run or walk?  Can I run?  Being a true Idiot, and a slow learner, I again try to run.  Notice, if you will, the word “try.”  Every step, my brain throbs, my stomach heaves, my had clamps uselessly on my head, trying to hold my brain in my skull.  After a shambling run, I stop again.  I physically cannot run.  So, walking it is.  

I slowly plow along, stopping briefly to offer some nutrition to the plants on the side of the trail.  The sound of rapidly flowing water I so enjoyed on the way out was now a torturous din, triggering the migraine to new depths of agony.  Maybe I should crawl?

After what seems an eternity of suffering, I see my car.  Oh yeah.  Sweet relief in sight.  Maxalt is such a helpful drug for my migraines.  I finally reach my car and dig into my “emergency kit” that holds my rescue inhaler, Maxalt, some Dramamine, and an anti-nausea medication.  Fortunately, the Maxalt is a “melt-away,” no water needed.  I dry swallow the anti-nausea medication.

Now, another decision.  It takes about 30 minutes for the Maxalt to work.  Do I drive in this amount of pain?  I wanted to get home, to my quiet bed and an ice pack, more than anything.  I pry my hand away from my head.  I can’t see out of my left eye.  Well, no.  I shouldn’t drive.  I climb in my car, crack the windows to allow some airflow.  I take my dark, “blackout” sunglasses from their holder and pop them on.  I recline my seat and close my eyes, waiting to ride out the worst of the pain. 

Thirty minutes later, my watch alarm rings- an obnoxiously loud chirp.  I crack my eyes open.  I can see but the throbbing is still there.  Good enough.  I bring the seat up and head for home.  I made it safely.  First thing, more Maxalt, some hydrocodone, another anti-nausea pill, taken with a few swigs of Gatorade.  I climbed into bed with my ice pack.  Brigid curled up next to me, purring softly.  I fell into a deep sleep.  When I woke almost four hours later, the pain had retreated.  It was still there, a shadow ready to strike again, but there was no throbbing.

I never knew a mile was so long.  This purgatory made the last exhausting mile of a marathon seem like a walk in the park.  Yes, life is all about perspective.

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Migraine Journey

Since the brain injury, migraines are a major problem. For the first year, I suffered a constant headache, with attacks of migraines 3-4 times a week. The neurologist started me on Topomax to reduce the frequency of the migraines, after I failed the trial with the medications that lower blood pressure. Passing out at work was not a good idea. My blood pressure dropped too low. Next up: Topamax. It helped reduce migraines to 1-2 a week but at a price. I had significant neuropsychological side effects. My processing slowed, I started losing language, my hands and feet tingled. At one point, a friend was concerned I had early dementia. Let’s try something else.

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The next medication is Verapamil. I started at 120 mg without much improvement. I am now taking 180mg with moderate improvement. Last time, we added a natural supplement: Petradolex. It is butterbur root. Supposedly, it helps maintain the firmness of the blood vessels in the brain. On the third week of the trial, I went an entire week without a migraine! Woot!

The neurologist also wrote a prescription to return me to Maxalt, as he did not think the Immitrex was managing the migraine pain. I began the process of getting the VA to approve a non-formulary medication (Maxalt). Well, it’s not as easy as a letter from the neurologist. I haven’t tried Zoamig yet. So, the VA started me on a trial of Zomig.

Too early to celebrate not getting migraines. On the eight day, I was visited by ghosts of migraines past. Very angry and painful ghosts, they were. I went home, took the new migraine medicine, anti nausea medication, Aleve, and crawled into bed with a cold pack on my head and a warm cat curled in my back. Four hours later, I wake up. Dizzy, nauseous, but no pain.

I feed and medicate Tosca, then clean all the litter boxes. Kaliyah and Bobby come out to play. I laid on the couch and watched the chaos. About 9:00, I go to bed.

Tuesday, I wake up feeling disconnected, woozy, and extremely sensitive to any sensory stimulation. I go to work. Thankfully, I have a graduate intern who is assisting in one of my groups. I was so sick, I had trouble comprehending the lesson up for discussion. J led much of the discussion that day. I went home at 11:30. Took medication, and crawled into bed with a comforting kitten. I wake up at 5:00 and follow the routine of caring for the ferrets and playing with them for a few hours. I crawl back to bed at 9:00.

Today, I woke up feeling good, although a bit drained. Good! Maybe the migraine is finally gone. I do well all morning. About 1:00 pm, I get an aura. Flashing lights, gray areas in my vision. Not good. By 1:30, I was medicated, curled into bed with a cold pack and warm cat.

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So, it’s now 8:30. The ferrets have played, litters boxes cleaned, Tosca fed and medicated. No pain right now, just a feeling of absolute exhaustion.

I’m not sure the new migraine medication is working. I think this has been the same migraine, returning from the prodromal stage to cause pain.

I just hope tomorrow I am totally migraine free. This has been an exhausting three days.

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Keeping hope.

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.

TBI and Fatigue

brainFatigue is an issue that I struggle with constantly since the injury. In researching fatigue and the connection to TBI, I discovered it is a common problem. According to most of the resources I found, there are two common types of fatigue: physical and mental.

Physical fatigue is caused by physical tasks. After TBI, even every day tasks such as showering can be diffcult. The body is often compensating for difficulties with balance, with perception, with coordination and use of muscles, and a host of other issues. This causes physical fatigue. Over time, the fatigue lessens as the body and brain learns and heals. Work can also cause physical fatigue. Physical fatigue is not a major issue in my recovery currently. It does impact how much running and fitness activites I can do on days I work. I lack the stamina to be able to work, then come home and exercise. And I am not able exercise before work. There is only so much physical energy I have in a day. On work days, it is usually spent at the office, although there are times I can push through the fatigue for a short run with Scout. Although,when I do, I risk a headache. My physical stamina has improved. I no longer require two naps a day. On a good day, I can run 5 miles without struggling or developing a migraine.

Mental fatigue, on the other hand, really kicks me in the tail. In the afternoon, I literally feel my mind losing its ability to function effectively. It becomes sluggish, taking longer to process information. My brain feels like running in a fog through dry sand at the beach. I eventually get the information but it is a laborious, and frustrating, process. My frustration tolerance lowers and I can be reduced to tears at times. I make more mistakes as my mind loses focus and my ability to concentrate on tasks reduces. Pushing through the mental sludge is exhausting. I also become more sensitive to stimuli such as noise and light. Taking breaks help but the only “cure” is taking a nap for at least an hour. I find after a nap, I can do some mental tasks in the evening, but I’m still not “fresh” until the next morning. I do better in low stimulus environments in the evening and tire out more easily.

Bobby is beat!  What a big day!

Sleep is important!

I read several articles about fatigue and TBI. Most of the recommendations they make I figured out by experience. Do mental work in the morning when rested. Get into a consistent sleep pattern. Most professionals recommend not napping. From experience, it depends on the individual. If I don’t nap, I can’t function from about 2pm onward. However, I still sleep at between 10:00-10:30 pm. Exercise is an important part of building stamina. Good nutrition is also vital. Here are links to articles about TBI and fatigue: http://www.tbiguide.com/fatigue.html
The TBI guide provides good basic information. I recommend it especially for someone newly injured and for any caretaker.

http://www.brainline.org/content/2010/02/fatigue-after-brain-injury-brainline-talks-with-dr-nathan-zasler_pageall.html
Dr. Zasler’s article on Brainline discusses fatigue in more detail. In reading his interview, realized part of my fatigue is connected to pain and migraine. I started Topamax as migraine preventative three months ago. Prior to starting the medication, I was having migraines 4-5 days a week. My sensory overload was much more sensitive. The sound of cutlery being dropped on plates was loud to me, for example. Currently, I only get 1-2 migraines a week and I am less sensitive. I think the pain is still impacting my level of fatigue. The article discusses TBI and fatigue but also mentions other medical conditions that can cause fatigue that need to be ruled out. I recommend reading the article and working with your doctor to rule out all medical conditions. I had blood tests for thyroid, iron, vitamin-D deficiecny, and tests to rule out hypopituitarism.

Fatigue is truly impacting my quality of life. I am considering talking to my supervisor about reducing my work hours again. Currently, I have all my appointments on one day. Effectively, I am “working” a full week, between rehabilitation and work. And I am always tired. However, I worry about cutting hours becuase it shows I am “not consistent.” I am doing the best I can. I thought I could handle the additional hours. However, it is turning out to be too much for me right now.

Fatigue with brain injury is one of the most common symptoms. It can last for years after the injury.