FEATURED IMAGE DESCRIPTION: A doctor holding up cat scan images of a variety of brains attempting to figure out the problem

BY: ALISON

It feels like most of the health care professionals that I sought out for help after brain injury – and there were many – gaslit me. They invalidated my experience and insisted that my symptoms were unrelated to brain injury. This made me feel helpless and alone. Although I was certain that something was seriously wrong, they made me doubt myself. I was so traumatized from not being believed that I stopped seeking medical attention despite my worsening condition. Finally, I had a medical emergency that brought to light that I had been misdiagnosed with a mild concussion for years. What I actually had was moyamoya, a severe and progressive neurovascular condition that causes strokes and seizures. Had the doctors believed me and investigated from the beginning, I would have had a much better prognosis and quality of life. In fact, looking back, some of their advice had been downright harmful and dangerous.

Not everyone with a brain injury has been misdiagnosed.

But I’m sharing this list of my symptoms in hopes that it will give someone the validation they need to advocate for themselves or a loved one. I felt comforted whenever I met other survivors that had similar symptoms; the exact symptoms that doctors told me didn’t make sense. My list is longer than the resources online, which only include the most common symptoms. Keep in mind that the effects of brain injury are different for everyone and that many other health problems can cause similar symptoms. So please consult a doctor about ruling out other underlying diseases and factors. Some of the following have resolved or lessened in severity over time for me.

Physical Symptoms  

  • Dizziness
  • Motion sickness
  • Loss of balance
  • Fatigue
  • Light headedness
  • Spatial awareness issues
  • Loss of hand / finger and eye coordination
  • Difficulty falling asleep, staying asleep, feeling rested after sleeping
  • Body feels heavy; exercise intolerance
  • Sound sensitivity
  • Light sensitivity
  • Visual stimulation, sensitivity (movement, multiple bright colours, busy displays)
  • Blurred vision
  • Pain in eyes when trying to focus
  • Pain behind eyeballs in sockets
  • Dry eyes
  • Pressure in eyeballs
  • Disruption to menstrual cycle
  • Headaches, migraines, auras
  • Neck, shoulder, back pain and stiffness, whiplash
  • Overly sensitive sense of taste
  • Nausea
  • Enhances sense of smell (after period of impaired and painful vision)
  • New and worsened allergies to foods and medications
  • Alcohol and marijuana intolerance
  • Difficulty writing by hand
  • Inner ear pain
  • Teeth grinding
  • Lock jaw

Cognitive and Emotional Symptoms

  • Neurofatigue
  • Altered sense of time passing
  • Difficulty focusing or concentrating
  • Difficulty starting a task, changing tasks or completing a task
  • Deficits to executive functions such as multitasking, time management, organizing, planning, prioritizing, decision making, problem solving, critical thinking, strategizing, analyzing, finding patterns; More gullible
  • Inability to drive safey
  • Vivid nightmares
  • Impulse control
  • ADHD and associated issues
  • Anxiety, PTSD, feeling easily overwhelmed
  • Inability to advocate for self
  • Self doubt; loss of confidence
  • Sadness, crying often
  • Issues with emotional regulation, mood, anger, frustration, outbursts, yelling
  • Repeating oneself, talking for too long
  • Difficulty reading and / or with comprehension
  • Difficulty communicating (speaking/enunciating and writing as well as handwriting)
  • Difficulty with word finding
  • Short term memory problems
  • Delayed memory recall
  • Difficulty recalling without remindrs
  • Difficulty following instructions
  • Increased risk of falling and / or other injuries
  • Slower processing and comprehension speed

Symptoms Post Neurovascular Surgery

  • Skin on face and head painful to touch
  • Dry skin on face and scalp
  • Dry hair
  • Tinnitus (ringing in ears)
  • Spontaneous twitching around eyes
  • Swelling in face, head, legs and feet
  • Loss of appetite, food aversion, nausea and vomiting after eating
  • Nausea and vomiting (unrelated to food)
  • Sudden jerky movements of fingers or hands/arms
  • Cerebrospinal fluid leak
  • Hematoma
  • Nerve pan
  • Pain at incision site
  • Difficulty opening and keeping eyes open
  • Migraine, headache
  • Strokes during surgery
  • Neurofatigue
  • Fatigue, too fatigued to speak or move
  • Widened head shape
  • easily chipped teeth
  • Permanent hair loss of incision site
  • Pain in jaw when chewing
  • Hearing heart beat in ear

Hemodynamic Symptoms

(Symptoms related to inadequate blood supply to the brain and/or blood pressure changes, including strokes and Transient Ischemic Attacks (TIAs) Note that some symptoms are bilateral and some are unilateral.

  • Soreness and pain in muscles hands, arms, and legs
  • Neuropathy in fingers, hands, toes and feet, like tingling, numbness, burning sensation, overly sensitive and uncomfortable/painful to touch, sharp nerve pain
  • Tingling, numbness and weakness in lips and mouth, and tongue
  • Weakness and/or sudden complete loss of strength and/or inability to move/control hands, arms, feet, legs
  • Obstructive sleep apnea as a result of stroke
  • Hemorrhagic TIAs when blood pressure goes up (e.g. carrying or lifting things, using physical strength, physical activity, bouncing/shaking movements, feeling stressed, angry, sad/crying, frightened, bending over or looking down or sleeping on one side, feeling cold, getting massages, certain medications, etc.)
  • Ischemic TIAs when blood pressure goes down (e.g. meditating,sleeping,feeling relaxed, being immobile, walking for more than 30 minutes, being dehydrated, feeling too warm, showering, drinking caffeine, certain medications, etc.
  • Symptoms sensitive to change in elevation, barometric pressure, weather
  • Dry mouth
  • Feeling dehydrated despite increased water intake
  • Difficulty learning new things
  • Memory issues (short and long term)
  • Easily chocking on liquids and solids
  • Singing off key (perfect pitch prior to injury)
  • Altered recognition of self in reflection and photos
  • Strangers’ faces feel familiar
  • Difficulty walking
  • Sudden brief moments of memory lapses or confusion or inability to think, such as not remembering how to tie my shoes or remembering passwords used all the time
  • Asymmetrical changes to smile due to changes to muscles
  • Loss of photographic memory
  • Sudden brief moments of memory lapses or confusion or inability to think, like suddenly not remembering how to tie my shoes or not remembering my front door code
  • Difficulty walking
  • Decreased pelvic floor muscle strength
  • Changed posture and related stiffness, pain and difficulty taking deep breaths
  • Decreased clitoral sensitivity; lessened vaginal secretions
  • Having to relearn how to read and understand words, sentences

‘Mind Yourself with Alison’ is a collection of self-help tips, research, and personal experiences dedicated to helping people thrive after brain injury (or other health problems). Check out Alison’s other BIST Blog articles Women and Brain Injury: What you need to know and How to be a Good Friend to a Survivor. You can follow her on Twitter, HERE.