Adventures in Brain Injury

There should be a theme song that goes along with the title of this post. It would be something adventurous, exciting, with moments that are slow and seem to drag on forever. There are brass, percussion, and strings. Then, with no warning, the music turns into atonal chaos. That’s brain injury. There are times life seems “normal” again. It may be different from before but there are still times of happiness, contentment, laughter, and even disappointment and sadness. Like a “normal” life. Then, without warning, the remaining affects of the injury causes life to derail again. Chaos descends.

I had adjusted, for the most part, to the changes in my life that brain injury brought. Gradually, I started to define my “new” normal- how my life is now. I still challenge myself. However, I accepted that I have some after affects that will not eventually go away. I learn to find ways to navigate around them.

Last week, I found out that I have one more issue. Brain injury:the gift that keeps on giving. I have a seizure disorder. Only 5% of Traumatic Brain Injury patients develop seizures. Usually they develop just after the injury or around a year into recovery. I should be so “lucky” with the lottery numbers! I’m now on medication to control the seizures.

There was a fire drill at work today. At the time, we were having a staffing to discuss a complicated case. I was standing next to a short filing cabinet; one of the ones about 3 feet tall but long. The alarm rang! Blaring, loud, concussive noise. The strobe light starting flashing. I dropped my soda and was crouched down, leaning into the filing cabinet, arms covering my head, with no idea who I was, what was happening, or what I needed to do. One of my coworkers talked to me, took my arm, and led me out of the building. I was incapacitated physically by the noise. I also experienced a few seconds of lost time, where I wasn’t aware of my coworkers at all. At least my coworkers know to look for me if there’s a fire alarm. I’ll needing help getting out. This is another example of how a service dog can help.

Ironically, I didn’t have a seizure then. However, when I was back in my office 15 minutes later, I phased out totally for around a minute. I suppose my brain was re-booting after all the offensive stimulation.

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Ironic Diagnosis

My neurologist ordered a repeat EEG (Electroencephalogram), the test for seizures. He suspected I have been experiencing partial seizure activity. I went in for the test last week. Approximately 5% of head injury patients develop a seizure disorder. Generally, the seizures either start just after the injury or a year later. I experienced at least one seizure-probably two- the first week after the accident.

The test isn’t painful but it is uncomfortable. To begin with, if the test ordered is “sleep deprived,” you have to stay up the night before. A sleep deprived test is more likely to pick up the indicators of seizure activity. The brain is fatigued and irritable. The clinician hooks around 12 wire leads to your head. It’s not painful. The connection is on the surface. The test itself takes about 20 minutes. In the first stage, a white light is flashed at different speeds. The clinician is trying to provoke seizure activity. I imagine this can make the job rather exciting, when someone experiences a full seizure during this part of the test. In the rest of the test, you rest quietly. I felt really sick during the flashing lights part. For those of you familiar with the original Star Trek, it rather reminded me of the episode with a torture apparatus with flashing lights was used.

There are different kinds of seizures. The most familiar is the Grand Mal seizure, where an individual loses consciousness and has uncontrolled muscle contractions. A simple seizure is an uncontrolled muscle movement. It can be just one muscle group; for example a hand. The patient usually doesn’t lose awareness. A complex partial seizure involves more complicated activity and might involve more than one body system or a partial loss of awareness. This seems to be the type of seizures I experience. I lose awareness during mine but may still be standing up, moving, etc. My brain goes “offline.”

Fatigue is the most common after effect of seizures. I wonder if this partly explains my ongoing struggle with always being tired. And why I face plant for unexplained reasons. My neurologist started me on Lamictal. Hopefully, it will control the seizures without massive side effects.

This is a good article about seizures and TBI. It explains seizures at a basic level. Seizures and TBI

At one level, having a concrete diagnosis with test results is a relief. I can finally point at something and say,”Here! I didn’t have seizures before my injury. Now I do. I told you my symptoms weren’t caused by depression… “. Ever since my TBI, it has been a fight with the medical providers to have my symptoms and after effects recognized. I was basically told it I can’t possibly still be having problems. It can be a real challenge to find a medical provider who listens to you and looks for a cause of the problem. My neurologist understands that any TBI can cause life long effects. I was unconscious for an unknown period of time after the accident and had significant cognitive symptoms in the days and weeks following. And unequal pupils. Initially, I was a bit more clear, as the swelling hadn’t started. My initial diagnosis was totally blown by medical providers.

On the other hand, having a seizure disorder is a bit frightening. I know I have a more mild form but it still means my life is different from before the accident. I now have to take anti seizure medication, probably for the rest of my life. It’s a serious diagnosis.

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Riley and I At Training

My service dog, Riley, continues his training. He is growing and making great progress. In addition to his other tasks, he now has to be tested to see if he can learn how to warn of impending seizures. He will be so much help for me to start having a more independent life. I’m currently having a GoFundMe campaign to raise money to help pay for his training. Please go visit the campaign and learn more about Riley. Donate if you can. If you can’t donate, please share. The larger the reach, the more successful the campaign. Thank you so much for your support.
Paws For Service

Service Dog Cadet

My friends and coworkers think me having a service dog will help me achieve better independent quality of life. Right now, I shop in a handful of stores I know. The other day, my friend told me to go pick up a couple of chickens for dinner at Grocery Outlet. They were on sale. I went to Safeway and paid $2 more per chicken. You see, I don’t go to Grocery Outlet. I don’t know where to find anything, I don’t know the store itself. I only go,alone to Safeway. It’s the only grocery store I go into without another person with me.

Sensory overload is much like swimming in the ocean. You get hit by a sudden wave and knocked under water, you’re tossed and turned, the undertow starts dragging on you. You’re not quite sure which was is up or how to get you feet under you. My brain lags. Like a computer with too many windows open, the more input, he slower the output. And you’ll get error messages.”error 42511 brain not found.” I do my best to find a way to have some pieces of my old life. While I alternate between accepting I am dead, though my body lives.

We hope Riley can help me function better in public and be more independent. He’s being trained to help balance me, nudge me to come out of overload, or lead me away from overloading situations, get in between me and other people who are crowding me, recognize I’m getting a migraine before the pain starts. Maybe, with him, I can stop avoiding life.

I love my cat and ferrets. I would be very happy if the only time I had to leave the house was to get food and go running. I safe here. It’s quiet. I’m in control. Running used to be a physical,challenge. Now, it’s not only physical but mental. I have to force myself to take the road. And clean up the road rash.

Service dogs can do fantastic things for their handlers. I’m trying to raise $10k towards his training on GoFund Me. He will cost $24 k to completely train, I’ll be taking a loan to cover the rest of his training. Unless I am lucky and raise the entire amount.

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This is Riley. He’s being trained at Speak Dog, LLC in Richland, WA.

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Reality

My life moves on without me.
Dreams floating dead in the water.
Who I used to be I am no longer.
And never will be again.
Put the pieces back together.
Try to make them fit but they never -quite- do.
The accident didn’t take but body but it sure as hell took my life.

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Changes

My neurologist is concerned about possible side effects to Cymbalta and decided to discontinue the medication. The past month has been interesting, titrating off a medication that was previously helpful in managing my depression.

Withdrawal from Cymbalta is not an easy journey. It is not recommended to stop Cymbalta and similar medications suddenly, a gradual reduction in the dose over time, to zero, is the recommended process. Withdrawal symptoms from Cymbalta include: depression, suicidal ideation, irritability, emotional instability, hypomania, insomnia, restlessness, brain “zaps”, limb pain, fatigue, sudden laughing or crying, headache, nausea, vomiting, anxiety, and other symptoms. (Cymbalta Withdrawal Symptoms). Brain “zaps” is a sensation of an electrical shock occurring in the head or neck, traveling to the head. Supposedly, a slow titration from the drug limits the withdrawal.

My experience with withdrawing from Cymbalta has been mild, compared to some of the anecdotal evidence on the internet. Many people speak of symptoms that make daily function impossible. The symptoms I experience are anxiety and restlessness. I find myself getting up and pacing around the house or office and experiencing the feeling that I have to move NOW! I feel there is something looming on the horizon, a generalized anxiety that I can’t connect to what is happening in my daily life. Right now, I choose to deal with these symptoms, hoping they will dissipate over time. I really don’t want to start another medication.

A humorous exchanged happened between me and my neurologist at my appointment last week. I mentioned my mood was fairly stable, depression-wise, anyway. Perhaps the thump on my head that caused my TBI “cured” my depression. He laughed and told me this has been known to happen. The jolt to the head acts in a similar manner to Electroconvulsive Therapy (ECT). Is the “cure” for my depression worth the price I pay with the different symptoms? Just can’t “win.”

I am not certain my depression is “cured” or if I am just in a space where the symptoms are not interfering with my life. I still have some of the symptoms but there are not as significant as they were when I first went on Cymbalta.

It has also been harder to write lately. My focus and interest are just not present. I get distracted from what I am doing and require many breaks.

Never give up hope. Life can still be a good experience, even with depression; even with TBI.

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Reminiscing

Today was a beautiful early summer day. The sky was blue. It was warm but not hot and a gentle breeze blew. While out walking, I remembered the halcyon days from my youth. Early summer freedom.

For the most part, summer meant being outside, all day. At one point, I lived in a rural area, surrounded by woods. My friends and I created a world of our own. One day, we were explorers on an unknown planet. Later, we fell through a time hole and ended up in a land of dinosaurs. We were war heroes and park rangers. The days ended by catching fireflies in a jar, only to turn them loose the next night. I had pet frogs and turtles. We played.

When I moved to Oregon, we no longer lived rural. We were in a suburban neighborhood. The games shifted to various versions of tag, hide and seek, water fights, pirates, and bike riding. Parents noticed what we were doing but rarely intervened. One rainy day game was “mice.” Two of my friends had the best rooms. They had a small storage area under the house’s eves with access through doors in their rooms. We used to pretend to be mice, based on the book “Ms. Frisby and the Rats of NIMH.” We were mice with enhanced intelligence. We went on “raids” of the kitchen, taking cookbooks, dish towels, and various other odd items. Pat and Debbie’s mother would “track” us back and we’d end up in a pillow fight or sprayed by a water bottle, or play fight with old wrapping paper tubes. Their parents also had a second job cleaning a bowling alley. Sometimes, I went with them. The kids would have small chores, then get to bowl after.

Childhood today seems to be different. The NFL has a program “Play 60″ to encourage children to be physically active for an hour a day. It saddens me that our children’s fitness and activity has come down to football players having to tell kids to play. But, then, I notice a virtual absence of children riding bikes or playing in neighbors. The only time I see a kid on a playground, a parent is helicoptering in the background.

We have, sadly, become a nation on fears. Fear of something happening to our children if we dare let them out to play, fear of terrorists, fear of economic collapse, fear of gun violence, fear of not having guns, fear… Fear. It is paralyzing our nation.

Yes, times changed. We are more aware of violence. And also less connected to our neighbors. My parents knew the kids I played with and knew their parents. They watched from their houses as we played. Other adults also paid attention. After a particularly fantastic bike wreck, a neighbor who didn’t have children, came out of her house and helped. We had neighborhood barbecues and other gatherings. We knew who lived there- and who was a stranger. Interestingly, the rate of child abductions by strangers has not grown. It is still a rare occurrence, just as it was when I was a child. Most abductions are parental abductions.

As I continued my walk, I felt sad for our country today and a sense of loss. I felt sadness for children who will never know what it is like to have no cell phone and know when to go home by when the street lights came on. Children growing up harbored indoors.

I turned a corner and heard children laughing. On the street were 5 kids playing an interesting game involving a plastic baseball bat, a whiffle ball, and a garden hose. I never figured out the object of the game. But, that wasn’t important. What mattered was the children having fun. For a moment, I wished I could join them. Laughter.

Beta Blockers and Weight Gain

Lydia H:

An informative article about beta blockers and weight gain. Beta blockers are sometimes used as migraine preventatives.

Originally posted on Dr. Marianne Legato Medical Dlog:

beta blockers

Beta blockers and weight gain are often found to be associated with each other. Research is still going on to prove the relationship scientifically. The article presents some data that are considered to be the most probable ways by which drugs containing beta blockers cause weight gain in many people.

Beta blockers are a type of drug that affects the response of your body to certain nerve impulses. This eventually leads to a decrease in the force and rate of contraction of heart. This, in turn, lowers down the blood pressure and oxygen demand of the heart. One way by which beta blockers produce such responses is by inhibiting the action of the hormone adrenaline. Some examples of commonly prescribed beta blockers are Tenormin, Lopressor, Metoprolol, Carvedilol, Inderal, Bisoprolol and Nebivolol.

Beta blockers find their use in the treatment of migraine, glaucoma, anxiety, arrhythmia, congestive heart failure, stage fright, angina…

View original 476 more words

Weight! Wait!

In the months following my brain jury, my weight ballooned from 137 to 160 pounds. This weight gain was particularly frustrating to me, as I was a hard core runner before I was hurt. I completed a marathon 2 weeks before I was hurt. After my injury, I was physically not able to participate in strenuous exercise for about 9 months. At that point, I started being able to shuffle (“run”)/ walk on a track for short distances.

From my first tentative runs, my body continued to heal and my brain started to make more sense of all the input I experienced. Nausea, dizziness, vomiting, and the constant headache receded. I added weight resistance training back into fitness. Eighteen months after my accident, I ran my first post-injury half marathon, with several walk breaks. I gradually lost the weight I gained in the three years, now, from the injury. My current weight is 141 pounds.

BMI charts are not accurate for athletes. Prior to my injury, my BMI placed me in the “high acceptable” range. At the time, my percent body fat was 17. For women, 17% body fat is “athletic,” below average, not above. Today, I went to the gym to do a quick upper body workout following my run. A trainer was there, so I asked her to do a body fat test with the calipers. I came in at 21%. This is considered “high athletic” for a woman my age. Although I’m not back to my pre-injury, running fanatic weight, I was happy with this accomplishment.

After my shower and nap, I had a doctor’s appointment at the VA. Part of the routine is weigh in and a BMI readout. The patient education letter instructed me that I was “over weight” according to BMI. It hit me hard. I was frustrated, depressed, and hated my post- injury body again. I started to make plans to significantly cut calories and increase activity. I wanted my old body back; my beautiful, fit body. My funk lasted almost an hour until I started thinking about why I was so upset.

Fitness has always been important to me. It’s a lifestyle. The challenge of pushing my body to run one more mile, one more lifting repetition, one more mile on the bike provided me with an outlet for stress and a sense of accomplishment. I always worried some about weight but did not obsess over it, until I gained the weight after my injury. I hated what the injury did to me physically. I still struggle with fatigue and to accept their are now physical limitations in balance, endurance, and migraines. However, I was ok with the post-injury weight. I knew when/ if I increased activity again, my weight would drop. And I was a healthy weight. Having a letter instructing me that I needed to lose weight hit my insecurities and sense of accomplishment. Fortunately, I understand my body fat percentage reflects my fitness more than BMI.

As I calmed down, I started thinking about the journeys of others. Most women in the US struggle with body image. Some develop Anorexia and/or Bulima. How would a Veteran in recovery from an eating disorder respond to the same letter? Could it cause a relapse of the disease? BMI is not used only in the VA. Every doctor’s office I have visited use the system. How many athletic women are told they are “overweight” by BMI charts?

Perhaps instead of a generic chart that looks at the “average” person, doctors offices need to use body fat percentage readings instead. Calipers are not 100% accurate, however, they provide more accurate insight into the body fat present in a human body. This would provide more information for the doctor to use in discussion with the patient.

Tonight, I write this blog still wanting my old body back. Perhaps it is still an unreasonable personal expectation of weight. Maybe it’s wanting the residual issues from my TBI to be gone. I want a “normal” life again. Perhaps, it’s a combination of both.

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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.

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