Migraine Living

I have a decision to make. My neurologist wants to refer me for a consult for Botox injections for chronic migraine. I’ve tried the standard drug preventatives. Verapamil helps reduce the frequency of the headaches somewhat and makes them more responsive to Maxalt.

Having a poison shot into your head… What’s not to love? On the bright side , I’ll have fewer wrinkles.

Speaking to how desperate I am to find an answer- I am seriously considering it. I’d be happy to get down to one migraine a week. I no longer hope for a “cure” or to even be like it was prior to my brain injury.
I just want more pain-free days. Hope is fragile at this point.

20140511-194709.jpg

ENOUGH lemonade already!

Image 

“When life gives you lemons, make lemonade.”  I am starting to hate lemonade.  Really.  How about something else?  Maybe some tasty chocolate?  Or at least orange juice. 

Last week, I talked to my supervisor about an issue with getting a service dog.  I had to retire Scout.  He has a great home and is happy, so please don’t worry about him.  He even has his own 8 year old boy to play with him.  I opted to go with a local trainer to get a puppy trained from 7 weeks old to do exactly what I need.  The puppy is tested for personality and temperament several times and trained to work from a young age.  The other issue is I have local support.  Due to the TBI, I can’t travel easily.  I need someone to drive me and I can’t fly in a plane.  The problem is the cost.  I have to do some fundraising.  The VA has a national program to advise employees of any possible ethics problems.  Any employee can contact them at any time.  I emailed them to ask specific questions about the ethics of fundraising as a federal employee.  My supervisor went off on me.  It was a 10 minute lecture about chain of command and trust.  I didn’t do it to get her in trouble or a lack of trust of her.  I did it to make sure there wasn’t an ethical problem and to get it in writing from the authority that deals with ethics.  I tried to explain my thought process.  Finally, I just went into “military mode” to get her out of my office.  “Yes Ma’am.”  I was ramped up; depressed, angry, frustrated.  I locked my door to calm down for a few minutes.  She came back, knocked on the door, and proceeded to lecture me again. I now was talking through a clenched jaw and noticed I had made a fist.  I was pissed.  The anger escaped by tears.  She told me to “calm down” and that she needed me fully functional that day.  Unfortunately, my ability to turn off emotions (or even modulate them effectively) was damaged.  Once I am ramped up, I can just switch off like I used to in the Army.  Now, it takes hours to get back to baseline.  She left, still angry with me.  I managed to make it until lunch time before the migraine struck. I spent all day Saturday in bed, sleeping or staring off in space.  I thought about quitting.  Friends pulled me out of the house Sunday. The situation was resolved the following week.

However, it highlighted just unhappy I am at work.  I spend so much energy just getting through the day.  I am constantly exhausted.  I can’t do what I did before I was injured.  Seeing patients is extremely draining, emotionally and mentally.  My cognitive therapist also noted that I take things literally.  That can be tricky in social work.  I came to the conclusion that it is time to consider medical retirement.

Depression decided to make a return engagement with me.  I dance with the monster every day.  It seems like I have worked so hard to recover.  And found out…  I can’t.   Part of me sees this as a failure of my body, of my determination.  Part of me just wants to give up and not get out of bed in the morning.  Then, there’s a piece of me that sees this as just another change.  Perhaps it is time to move onto another career focus.  In the meantime, my life is back where I hate it- uncertainty.

Really, how about some chocolate?

 

 

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.

20130903-142358.jpg
Talisien is being squished