Identifying and Coping with TBI, The Early Days

What is a TBI?

A Traumatic Brain Injury or TBI is any injury that affects how the brain works. A concussion falls into that category. It is a misconception that you have to directly strike your head to incur a TBI. In my case, the impact of a double hit in a car accident was enough to rattle the brain in my skull resulting in a brain injury.

Some individuals are at greater risk for getting a TBI or for having worse health outcomes or prolonged recovery after such an injury. People who have had previous head injuries, even as far back as a child, lower weight at birth or premature birth, along with those who have had mental health struggles, including post-partum depression, may have a longer road to recovery. I had all of these stacked against me.

TBI Symptoms

Symptoms can appear almost immediately after an injury or can take up to a few weeks to appear. In the early days of a TBI, people can experience a variety of symptoms. Early symptoms can include some or all of the following:

• Losing consciousness.

• Nausea that may be accompanied with vomiting, particularly with motion or sensory overload (lights, noise).

• A headache that does not go away with painkillers.

• A headache that worsens and feels like the head is under pressure or “swelling”.

• Word finding problems.

• Thought processing challenges and inability to follow conversations.

• Memory problems.

• A change in behavior, including irritability or impulsiveness.

• Vision issues including blurred vision, double vision.

• Balance issues.

• Differently sized pupils or delayed eye tracking.

I think I have a TBI. What do I do now?

1. Seek immediate medical help.

CT Scans and MRIs are important to identify any brain bleeds or swelling that require immediate attention. You may need ongoing support. This can include but is not limited to: Neurologist, Neuro-surgeon, Chiropractor, Neuro-ophthalmologist, Vision Therapists among others! The list can be pretty long depending on the nature of your TBI and other potential injuries. Physical maladies or misalignment can contribute negatively to post-concussive symptoms. After addressing immediate physical needs and impairments, there may be hormonal and mental needs to address too. We will talk about these in later chapters.

2. Get an advocate! Ask your doctor (or lawyer, or insurance provider) for a social worker or a case manager to help work through this crisis. It can be overwhelming

3. Rest. Listen to your body and don’t be afraid to sleep. Your body heals during sleep and if employed, you may need an extended break from work. You are not being lazy! I cannot emphasize this enough.

4. Take a technology break. Turn off all screens.

5. Take a people break. Avoid crowds, bright lights and loud places. Busy places can overstimulate your senses and aggravate symptoms. This includes big box stores, theatres and restaurants.

6. Cry if you need to. This is tough.

7. Get out in nature. Even sitting in a garden is great way to calm your mind.

8. Move when you’re ready. This may be simple seated yoga, stretching or short walks. Most importantly, listen to your body.

9. Start a brain binder to collect information including notes, reports, receipts and keep everything in one place. The amount of information can be overwhelming and confusing in the early days. You may need to go back to notes at a later date when you are able to process better. And there is a good chance you may need this information for insurance or legal purposes (i.e. car accident), for working with an employer on medical leave or accommodations at work or for applying for disability and other supports.

Chapter Assignment

There is no assignment for this chapter. There is a checklist.

1. Immediate medical assessment (Emergency department, CT scan, MRI).

2. Follow up medical appointment(s) scheduled.

3. Referral appointments to specialists if required (neurologist, neurosurgeon, other).

4. I have an advocate (family, friend, caseworker) to attend meetings and take notes.

5. I have an advocate (family member, friend, case worker) to check in on me at regular intervals.

6. I have started a “Brain Binder” to store all my information I receive.

7. I give myself permission to rest.

For the Non-TBI Reader. What a TBI Survivor is going through.

Imagine driving through the thickest fog you can imagine, and that you are down to a crawl with only meters or yards visible ahead of you. Now, double that fog. Imagine you are wearing dark sunglasses, barely able to see inches in front of you. This is the mental and processing fog that many survivors face.

Simple words and conversation can be elusive. Sounds, lights, visual stimulus of daily life is overwhelming. It is a sensory overload. The best I can describe is that the brain feels like it is spinning constantly unable to focus on a single concept, frequently paired with a pressure headache. It is extremely frustrating, painful and lonely. Sleep can be elusive compounding symptoms.

In addition to this mental fog, now imagine you are slogging through molasses. Every move is a tumultuous effort and you just want to sit and rest. Basic activities of daily life are utterly exhausting feeling like you've just run a 10k. I used to be a runner, and can attest to this!

Lack of complex processing capabilities can further lead to frustration and irritability, and even impulsive behaviors. TBI comes unexpectedly and there is an adjustment period where the person undergoes denial and may lash out. It is not intentional and not intended to be an attack on anyone. Try to appreciate that this is a frightening experience that may be accompanied with increasing degrees of depression, isolation and grief.

Every individuals experience is different. Everyone's recovery is different. There has been a lot of great information coming out in recent years, but the truth is there is no magic solution or set timeline for recovery. Know that you cannot compare one person to another. The medical community is learning more and more every day about concussion and TBI.

I am a Support Person. How Can I Help?

1. Don’t challenge a TBI survivor or pelt with questions. Your loved one is incapable of processing information at their old pace, or yours!

2. If a TBI recoveree is struggling with a concept or conversation, it’s okay to divert their attention or change the topic to something lighter.

3. Keep conversations at a slow, even keel and on lighter topics as much as possible in the early days.

4. Limit stress.

5. Let them rest.

6. Help get medical assistance.

7. Attend medical appointments and take notes.

8. Check in! It helps to know people care and are willing to help.

9. Drop off groceries. Stores can be a terrible experience for recent TBI victims. Bright overhead lights, visual stimulus of brightly colored signs and products combined with echoing sounds of big box stores can be overwhelming.

10. Offer to help clean house or do it for them. A recoveree may struggle with even light exercise. Bending can trigger head pressure issues, cause imbalance and dizziness.

11. Never say ‘you look fine’ (more on this later).

What helps me?

Things that help me deal with ‘concussion brain’ include turning off the technology (screens), meditating, light exercise like walking or yoga, natural light and having good bed time practices in place. This was particularly important during the early days. And it is a good practice I follow years later.

As I was able to start re-engaging in life, I had to take it REALLY slow. Recovery is a marathon not a sprint. For television, short sitcom shows, preferably those I had seen before were easier to tolerate. Wearing sunglasses of varying color tints (grey or brown), brimmed caps to block overhead lights and changing the lights in my home to incandescent bulbs helped reduce eye strain and headaches.

When I was highly symptomatic I discovered by luck when trying to find incandescent bulbs, that blue tinted ones helped a lot. I learned later that blue is calming for those with vision challenges. I still sometimes put on my blue lamp light after a stressful day. Earplugs to dull noise levels, even in my own home, help reduce sensory overload and headaches.

My Story

I incurred a TBI as a result of a motor vehicle accident in 2014. At the time, medical information and concussion protocols were just beginning to become commonplace and available.

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See Chapter 1, Part 1. A TBI Story, Green Doesn't Always Mean Go.

See also Chapter 2, Part 1 A TBI Story, The Long Winter of Depression

See Chapter 2, Part 2 TBI Depression and PTSD

See TBI Healing Modalities and Treatments

See TBI Recovery: Plateaus and Setbacks

A few Sources and Resources

The majority of the information herein is what I gathered across many medical appointments and personal experiences. There are a lot of great resources available online today that were not there in 2014, and certainly not consumable by myself during the early injury days.

https://www.cdc.gov/traumaticbraininjury/index.html

A History of Low Birth Weight Alters Recovery Following a Future Head Injury: A Case Series https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5385139/