TBI Recovery: Plateaus and Setbacks

Set-backs are normal

The first six months after a TBI are where the most significant gains are made in recovery. It is very common for progress to appear to stall or plateau at that time, or any point in time in the recovery. It is also common to see relapses or setbacks. We have to be mindful to not push too hard and to monitor for signs that say “slow down” or “time for a change.”

Signs of a Setback or Plateau

These vary for each person but may include any changed or worsening symptoms of TBI or depression outlined in the prior two chapters. This includes:

1. Nausea

2. Increasing and changed ‘headaches’

3. Head pressure

4. Headaches that do not go away with painkillers

5. Word finding / ataxia and challenges with conversation

6. Thought processing issues

7. Memory problems

8. Change in behavior (irritability, impulsiveness)

9. Vision issues, eye tracking issues

10. Balance issues

11. Detachment

12. Sadness

13. Negative thoughts

14. Self-blame

15. Insomnia

16. Anxiety

17. Reliving the experience

18. Turning to drugs or alcohol

What can I do now?

If you are having worsening symptoms always seek immediate medical help. Some trauma related health issues may take months to manifest. About half of people with a brain injury experience depression in the first year. Close to two-thirds within seven years post injury. This compares to 10 percent of the general population. Worsening symptoms can persist for months or years.

It is not all doom and gloom! The brain is a pretty miraculous organ. The medical and current science community do not have all the answers. New information and research is coming out regularly on neuroplasticity and new therapies. Traditional thinking (and what doctors informed me) is that a TBI recoveree will only expect to make gains up until about the two-year mark. I can unequivocally say from personal experience and through members of a support group I belong to this is not true!

Change your routine!

Recovery takes time. What worked for you yesterday, may not work, or work as well, today. It may be time to revisit your routine, diet, exercise plan, supplements and health care treatments. Having a good advocate and care team can help identify new or changed modalities that may work for you now. There are a lot of therapies out there to try including:

• Chiropractic care

• Physiotherapy

• Exercise

• Massage

• Osteopathy

• Vision Training

• Hormone replacement

I have another post that details these and more.

https://vocal.media/motivation/tbi-healing-modalities-and-treatments

Identify your triggers

Go back through your journal you have been maintaining and tracking your treatments and how you are feeling daily. See if there are any patterns that are identifiable. If you are struggling to do, ask a family member or your advocate to help.

Try new therapies

Don’t be afraid to try more radical or what may be perceived as fringe or questionable therapies. There is increasing evidence to support EFT tapping and Energy healing as a treatment.

Art therapy has been getting a growing body of evidence behind it as well whether it is drawing, painting, photography or writing. It provides psychological and cognitive benefits and can activate neuroplasticity to assist in recovery.

Chapter Assignment

Continue your work from chapter 2 including:

1. Have a morning positivity practice in place (series of daily affirmations)

2. Have an evening wind down and gratitude practice in place.

3. Journal daily.

Continue work from chapter 3 including:

1. Use a journal to track your appointments and treatments. Write down how you felt both during and after your treatments. You can bring this to your appointments with you!

2. Continue to update your brain binder to track all notes. You may need this for back to work planning, insurance or legal purposes.

3. Continue light exercise at home (consult your doctors!)

4. Including mindfulness activities in your daily routine including Meditation, EFT tapping and yoga

Start new:

1. Anytime you are experiencing worsening or changed symptoms, seek medical help.

2. Journal daily. Try to recall moments during the day when you felt unwell. Be sure to write this down.

a. How did you feel? Were you tired, head-achy, frustrated, confused, struggling with memory or words?

b. What led up to that moment? Was there a specific trigger (a light, a noise, an event)? A collection of triggers? Were you engaging in an activity that caused this feeling (for example, working at a computer screen, watching an action movie, driving, concentrating on a book or a conversation.)

c. Are you able to identify a tipping point? A point where you need to take a break or slow things down to keep the symptoms manageable.

3. Repeat number two (2) and journal those moments you felt really well!

The goal here is to help you identify your ‘triggers’ and ‘successes’. Identifying both triggering and positive moments help you monitor and track your recovery and uncover what is and is not working for you. You may identify new symptoms you hadn’t realized you were experiencing! All of this information can only help you in your recovery and seeking appropriate treatments.

4. Talk with your healthcare team (or advocate) about your triggers and successes to look for ways to change existing therapies or introduce new ones.

5. Explore art-ful hobbies such as drawing or painting. Art can be a wonderful way to express unsaid thoughts or feelings and can help build new neural connections.

For the Non-TBI reader. What the TBI survivor is going through

Words cannot express the frustration a TBI recoveree is going through when finally feeling better, resuming their previous life and they encounter a significant relapse. There is often denial regarding the degree of struggle since the desire to return to their former self is so strong. This can lead to the recoveree going through the motions to the best of his or her ability and ‘faking’ being alright. The result? A significant setback.

Part of the challenge is that the TBI survivor really does “look” fine. A brain injury survivor may experience high functioning days followed by very low functioning days or moments. This adds to outsider confusion on the state of a TBI survivor and makes it difficult for them to understand the complexity and degree of support he or she may need. Society has a hard time recognizing invisible injuries at the best of times. People, including doctors, repeatedly tell us we look fine, that’ it’s all in our head and it’s time to resume normal life.

Your TBI loved one may not capable of functioning at the pace of you or their prior self. This may be a daily or occasional occurrence. You may witness this as impulsive behaviors triggered by an inability to think things through as before.

In our desire to simply be who we were before, many TBI survivors push too hard, too quickly. This can often lead to a relapse of symptoms. It truly is difficult for the TBI survivor to recognize how bad they are devolving. A downward spiral is very common of attempting too much, triggering headaches, seeking relief with medications all while the outside world says “You look fine.”

I personally started to question whether I could ever return to any concept of a normal life, not just my own previous life. At some point in a brain injury survivor’s recovery he or she may come to accept that they never will be their former self, which can trigger a lot of mixed emotions including depression.

One of the biggest struggles I encounter is when fatigued I struggle with missing or forgetting ‘words’, which progresses to losing my place in a sentence or conversation, then on to forgetting the entire conversation. It is an extremely frustrating and humbling experience. Humbling in that you have to rely on others around you. Frustrating when you are fully aware that this is information you should know, that you used to know. I vaguely recall one conversation where I used words and phrases like “you know, a household pet, furry, four legs, pointed ears, smallish” to because I could not recall the word “cat.”

To this day (seven years out) and returned to my career, I still have days where I need to work at a slower pace or pause and rest. I’m able to recognize when these days are coming by closely monitoring how I am feeling and being aware of my triggers. Triggers for me included (but do and have changed over time) things such as:

• Barometric weather pressure changes

• Stress

• Too much screen time (including computer, smartphone and television)

• Too much focused concentration (intense reading or work activity)

• Action movies

• Sensory overload (all senses – visual, auditory), especially when tired like at the end of a day.

• Crowds

• Bright lights, flickering lights

• Misalignment of neck and upper spine

As a support person, how can I help?

The best advice I can give a support person is to pay attention! Pay close attention to the subtle signs your loved one may be exhibiting,

- Furrowing their brow, touching their head

- Closing their eyes excessively

- Taking increased painkillers

- Becoming increasingly quiet during conversations

- Acting increasingly impulsive

- Avoiding people or places

- Struggling with balance

In addition to the expected physical symptoms of a TBI, combatting depression is a very real part of most TBI recoverees lives. Your loved one may be fine one day, and as symptoms relapse or worsen, so too can their mental health. About half of people with TBI experience depression in the first year after injury and this rises to two-thirds within seven years post injury. This is covered in more detail in Chapter 2.

Help your loved one by documenting how they are feeling during various activities, including therapies and treatments, throughout their day. The goal is to identify triggers that will aggravate or trigger symptoms and set-backs. Encourage your loved one to seek the medical help and treatments they need.

What helped me?

The recovery process was long and frustrating. I had days I felt great. Days I could conquer the world! I’d go for a long hike, do yard work, play with my daughter and dog. Then, there would be days I was unable to get out of bed. Often immediately after my high functioning days. I’d have weeks where I’d have good memory recall, decent focus, then days or weeks I couldn’t remember my phone number or follow a conversation. Treatments or activities that worked one day, failed to work the next.

Tracking my ‘health’ (mental and physical) and activities daily and how I felt after appointments or activities in a journal helped me identify my symptom triggers and understand how long I could pursue activities. I’d note an eye tremor at about 30 minutes in watching television and knew that was my sign to step away.

I was fortunate to have a caring healthcare team to help monitor and track my health – physical and mental – as I recovered. My chiropractor, massage therapist, physiotherapist and vision therapist would all ask how I felt after the last appointment and how I was feeling in that moment, and post treatment. They took detailed notes and would be able to fill in the gaps I missed in my own journal. I also had a close friend who was also my advocate help me to recognize when to slow down or when to change things up.

Specific steps for me included (and do to this day)

• Daily journaling. Taking notes to track how I am feeling in response to daily life.
• Recognizing my signs of fatigue early on such as headache or blurry vision.
• Recognizing my symptom triggers
• Asking friends / colleagues help identify my symptoms triggers
• Resting when I need to
• Regular Exercise
• Daily mindfulness and positivity activities

Related Posts and Stories

A TBI story, Green Doesn’t Always Mean Go

Identifying and Coping with TBI, The Early Days

A TBI Story, The Long Winter of Depression

TBI Depression and PTSD

TBI Healing Modalities and Treatments

Additional sources and resources

https://www.flintrehab.com/tbi-recovery-timeline/

https://www.flintrehab.com/art-therapy-for-brain-injury-patients/

https://journals.lww.com/headtraumarehab/pages/currenttoc.aspx

Monitoring weather health forecasts for their impact (be sure to update for your location) https://www.flintrehab.com/tbi-recovery-timeline/