10 Hidden Struggles of Traumatic Brain Injury

What Doctors Didn’t Tell Me!

Displacement of the Skull │ Neck & Spine Misalignment │ Vertigo │Eardrum Collapse │ Extreme Vision Issues│ Flooding │Paroxysmal Sympathetic Hyperactivity  │ Aphasia │ Proprioceptor Dysfunction │ Diet & Hydration 

As of writing this blog, I am 7 years, 5 months and 12 days out from my traumatic brain injury (tbi), that turned into Persistent/Prolonged Post Concussion Symptoms (PPCS) that completely upended my life. But who’s counting? The primary care physicians, chiropractors, neurologists, sports medicine doctors, ophthalmologists and rehabilitation facilities all informed me about the normal things to manage after a traumatic brain injury. This post is about the things no one told me that ended up being crucial to my understanding, coping and healing.

First, let’s recap all the normal things that doctors tell you that you might need to navigate after a brain injury:

Physical symptoms

Headache, Nausea, Vomiting. Fatigue. Drowsiness, Problems with Speech, Dizziness, Loss of Balance

Sensory symptoms

• Sensory problems, such as blurred vision, ringing in the ears, a bad taste in the mouth or changes in the ability to smell

• Sensitivity to light (photophobia) or sound (phonophobia)

Cognitive, Behavioral & Mental Symptoms

Loss of consciousness for a few seconds to a few minutes, No Loss of Consciousness, State of Being Dazed, Confused or Disoriented, Memory or Concentration Problems, Mood Changes or Mood Swings, Feeling Depressed or Anxious, Difficulty Sleeping or Sleeping More Than Usual

Out of this menagerie of symptomatology, I experienced loss of consciousness for a few minutes directly after injury, intense 24/7 brain pain, feeling like my brain had rug burn when overexerted, nausea, fatigue, problems with speech, dizziness, loss of balance, blurred vision, photophobia, phonophobia,, disoriented, memory and concentration problems. As well as a few things not listed above; aphasia, vertigo, paroxysmal sympathetic hyperactivity, reticular activating system dysregulation, proprioceptor dysregulation, prefrontal cortex cognitive linear processing issues, flooding and onset of seizures when my brain had to process too much information. 

Sounds like a cornucopia of fun, doesn’t it? I guarantee you, it’s more like a debilitating and depressing pit of suck in the early stages! Here are the things I learned the hard way that professionals I received care from, such as primary care physicians, neurologists, sports medicine doctors, ophthalmologists and rehabilitation facilities didn't tell me.

Traumatic Brain Injury Struggle #1 - Displacement of the Skull

There are 8 major bones that make up the neurocranium (a.k.a. The skull): Parietal (2), Temporal (2), Frontal (1), Occipital (1), Ethmoid (1) and Sphenoid (1)

By the very nature of getting a tbi, you have hit your head. Only one professional, out of a dozen that I’d seen over the years suggested, did an exam and concluded that my skull bones were severely displaced or misaligned. My family chiropractor of over 30 years discovered a month post tbi that the Occipital bone on the back right hand side was shoved up and tucked in, the right Parietal was depressed in the back and sticking out toward the front of my skull and the Sphenoid bone was depressed on the top right side of my skull and sticking up on the left side. The chiropractor tried his best to put these bones back into place. This process was exceptionally traumatic with an already inflamed brain. 

That was the last time anyone said a word to me about my skull, even though my symptoms over the next two years were not getting any better with various treatment modalities attempted. Unbeknownst to me, the bones in my skull were still out of alignment and were compressing the meninges, which are three layers of tissue (like a sack) surrounding and cushioning the brain and spinal cord. This caused extreme brain pain (different from a normal headache) and created the feeling of an electrical storm in my brain 24/7. This is why all treatment modalities tried did not provide relief or improvement. 

Two years post tbi, I tried cranio-sacral. My mother noticed an improvement in my ability to think and speak after the first cranio-sacral session. It took a year and a half of weekly cranio-sacral sessions to finally get my skull into alignment. So it took three and a half years post tbi to finally feel like I was starting to heal, gain traction and experience deep healing sleep. 

Struggle #2 - Neck and Spine Misalignment

As stated earlier, attaining a tbi comes from hitting the skull. It is very common for whiplash to occur during the tbi. Hence, the neck and spine are also going to be affected and become out of alignment. This misalignment, especially of the cervical atlas (C1), can contribute to various post concussion symptoms like headaches, dizziness, vertigo, nausea, visual disturbances, neck pain and stiffness, jaw pain (TMJ), shoulder and back pain, facial pain, tinnitus, numbness and tingling in hands and feet, difficulty concentrating and other cognitive difficulties due to the impact on the brainstem and spinal cord function. 

It took almost a year, and 3 chiropractors later, before anyone addressed the extreme misalignment of my atlas, neck and spine. I have to ask myself, how much faster could I have been healing if these misalignments had been taken care of from the jump? Seek out a chiropractor that practices neuro chiropractic and orthogonal chiropractic, to focus specifically on the alignment of the cervical atlas.

Struggle #3 - Vertigo

Seriously, I didn’t realize the actual difference between vertigo and dizziness until my tbi. Besides vertigo standing up, when lying down flat, eyes open or closed, I’d feel like my head was at a decline of about 30° while the room was spinning. It was an awful feeling because you can not be a functional person while you are experiencing vertigo. No one explained to me that the crystals in your ears can shift, especially after a head trauma that can cause severe vertigo. 

When the crystals in your ears (canaliths) move they can cause Benign Paroxysmal Positional Vertigo (BPPV). There is a protocol that you find on youtube that doctors use to help reposition the crystal in the ear and alleviate vertigo. This protocol is called the Epley Maneuver or the Canalith Repositioning Procedure (CRP). This protocol is completely safe, takes only a few minutes and can provide immediate relief. You may need to repeat this protocol multiple times to get the canaliths back in place.

Struggle #4 - Eardrum Collapse

I walked around for 5 years with a collapsed eardrum!!! I was beyond furious when I found out that I had a collapsed eardrum! Since the tbi, there was intense pressure in my right ear and down my jaw and neck. My hearing in my right ear was off the charts sensitive and I couldn’t tolerate any wind hitting that ear. At this point, I had been to several neurologists, primary care physicians, sports medicine doctors, chiropractors and NO ONE ever looked at my ears! By year 5 I couldn’t take it anymore and went to an Ear, Nose, Throat doctor to see what was up with my ears and my hearing issues (phonophobia). 

Normally, it would be interesting and kinda cool news to find out that you have way better than average hearing and can hear frequencies that most people can’t hear (hyperacusis) . However, with a brain injury and severe phonophobia, it was one of those moments when you raise your eyebrows to the heavens and ask, “Really, this is my superpower! Hyperacusis that causes me pain and discomfort 24/7? Why couldn’t I have ended up a math or music savant?”

In addition to finding out I had hyperacusis, I found out that my eardrum was and had been collapsed for 5 years. The first solution we tried was to puncture my ear drum, releasing the pressure from my eardrum laying on the bones of the inner ear creating a suction effect and causing extremely uncomfortable pressure all the time. Luckily, this procedure did the trick and cleared up 80% of my 24/7 discomfort. Phonophobia is still present but the pain is no longer part of my daily life.

Struggle #5 - Extreme Vision Issues

Cranial-Sacral and Neuro/Orthogonal chiropractic were two modalities that provided me with healing and relief. The third treatment that helped my brain heal was Vision Therapy provided by a Sports Vision Therapy clinic. These people got it. They understood the vision/brain connection and how to begin the healing journey to bring vision and the brain into coherent communication. 

From extensive testing, it was discovered that I had convergence insufficiency and ocular motor dysfunctions of deficiencies of pursuit eye movement and deficiency of saccades. All of the technical jargon to say the my eyes were not able to converge to maintain a single clear image, my eyes were struggling to smoothly track a moving target and 

impairments in my eye's ability to perform rapid movements that change the point of fixation, impacting tasks like reading, scanning, and visual attention. 

These diagnoses explained why I lost the ability to read because the words were moving on the page and write because I couldn’t track the words or think linearly to create coherent sentences. When in a store, especially a grocery store, all the items on the shelves were moving. Helped explain why I couldn’t keep my eyes open when in a car because I couldn’t manage to track all the moving objects and it was all too much chaos for my brain to try to process. Explained why I couldn’t watch TV or look at a computer monitor. 

I have always been an avid reader. After a year of vision therapy, I was finally able to read again with accommodations. I still can’t read an actual book because there are too many words on both pages that overwhelm my brain, but reading from a Kindle where I can enlarge the print and have fewer words on a page has given me back my deeply cherished ability to read.

Struggle #6 - Flooding

What is flooding? Ever heard of it? Flooding is the unintentional mental overload because the brain’s filters no longer work properly (reticular activating system dysregulation). These filters normally allow us to sort through everything that comes into the brain - sounds, sights, touch, smells, movement, questions, problems, demands, etc., so we can pick out what is important to focus on. 

A healthy brain can pick out what’s important without noticing the ancillary things such as the air conditioner or ceiling fan sounds, the hum of the refrigerator, the onslaught of imagery when you are driving. When the filters are damaged or impaired, everything comes into the brain with equal force, all at once and too fast. Because the injured brain now works much more slowly, it cannot sort the information fast enough and becomes overwhelmed. Flooding can cause Paroxysmal Sympathetic Hyperactivity.

Struggle #7 - Paroxysmal Sympathetic Hyperactivity (PSH)

I had all of the symptoms of PSH but was never informed that this constellation of symptoms had a name. What the heck is PSH, you may be asking. PSH is defined as a clinical syndrome manifested by paroxysmal (sudden onset) episodes of sympathetic nervous system activity that occur in patients with severe acute brain injury. Core clinical features include tachycardia (fast heart beat) , hypertension (increased blood pressure), tachypnea (rapid and shallow breathing), hyperthermia (elevated body temperature), sweating, and/or increased muscle tone and posturing. Posturing can be either Decerebrate Posturing, characterized by an arched neck and head, straight arms, bent wrists, and curled fingers or Decorticate Posturing characterized by closed hands, internally rotated legs and adducted arms.

When my brain starts getting overwhelmed, one of the first indicators is that my fingers will all extend like I’m forcing them open purposefully, I’m not by the way, and then they will start moving involuntarily like I’m doing some crazy sign language or as we affectionately term it, I’m throwing gang signs. 

Imagine that you are out in public, the lights, the sounds, the people, their movements, the motion in your environment all overwhelms your brain and uncontrollably your heart starts racing, you are breathing fast and heavy, you start to become overheated and sweating, start to shake and involuntarily cry. Now that’s just frustrating! If you have experienced this then you know that it completely hoses the next couple of hours of your life, if not the whole day, until you can get in a dark quiet place to allow your brain to recover.

Struggle #8 - Aphasia

Aphasia is difficulty finding words, using the wrong word, repeating words or phrases, speaking in short phrases instead of sentences, and difficulty understanding what others say. Not one professional ever advised me about aphasia or that aphasia was why, after the tbi, I could not find the words for words that were previously in my everyday language. The access to that information stored in the brain was just gone. It was incredibly frustrating.

 As my brain began to heal in earnest after a year and a half of cranio-sacral, my daily aphasia symptoms decreased substantially. These days, when my brain is extremely fatigued, aphasia will make an appearance.

Struggle #9 - Proprioceptor Dysfunction

I know what you are thinking, what is a proprioceptor?  Proprioceptors are sensory receptors in muscles, joints and the inner ear that provide information to the brain about the position and movement of the body and its limbs, allowing us to maintain balance, posture, and perform coordinated movements without relying on vision. A TBI can damage the brain regions responsible for integrating and processing proprioceptive information, leading to impairments in balance, coordination and fine motor skills. 

I found out about proprioceptors when I asked a sports medicine physical therapist why, when my brain was stressed, I was unsteady on my feet and found myself reaching for anything in my environment I could touch as I walked like walls, counters, chairs, couches. As soon as I touched something, I felt like I could walk straight again. I later discovered that this is called Sensory Seeking Behavior. Who knew? Physical Therapy, Occupational Therapy, Sensory Integration Therapy, Somatosensory Stimulation Training, Tai Chi, Qi Gong and core exercise can all help improve proprioception.

Struggle #10 - Diet and Hydration

These two things are not symptoms but can greatly affect symptoms and daily quality of life. Diet is HUGE and I had to learn this the hard way. Again, no professional advised me about the importance of diet. Your brain needs all the tools it can get to help it heal.

When you damage the brain, your body tries to heal the damaged areas and needs fuel. Carbs and sugars create a brain crash. I would become almost non-functional after eating carbs or sugars. As in, not being able to think linearly, hold conversations, think critically, walk a straight line or function beyond a 3rd grade level. I had to give up pasta, chips, bread, potatoes, and sugary foods. My brain and body craved clean protein sources that helped fuel my mitochondria (powerhouse of the cell) and ATP production. 

Most of us do not realize that we are walking around constantly dehydrated. Our body needs water to run all the systems, including healthy mitochondrial performance. Electrolytes are vital to maintaining bodily functions like hydration, muscle and nerve function, regulating blood pressure, and balancing pH levels. All things absolutely necessary for a healing brain. Of all the ways to get electrolytes, my body craved Coconut Water that is low in sugar and fantastic for my body. When I was experiencing flooding or PHS, I’d need to eat peanut butter, blueberries and coconut water. That combo seemed to help balance me out much quicker.

It is my hope...

If you have or know someone who has a tbi, I hope my hard earned knowledge concerning these hidden struggles of traumatic brain injury will help you or your loved one manage the varied minefield of symptoms that come with a traumatic brain injury a little easier and find healing a little faster. If you need help navigating the crazy tbi journey, reach out. I’m here to walk the journey to recovery with you. If you have any questions or comments, please email us at healing@numinoussoul.com or comment below. We would love to hear from you.

In a radiance of love,

Angel Marie

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