Recovering from Post-Concussion Syndrome

It all began with an accident–my husband on a bicycle and a car that didn’t see him. (The picture above is of the helmet that probably saved my husband’s life.) I thought the broken bones would take longer to heal than the concussion, but I was wrong. I had a university undergraduate degree in psychology but learned that I knew very little about concussions. AND going through the experience was vastly different than reading about it in a textbook. The concussion turned into post-concussion syndrome because my husband’s symptoms persisted for more than a few months. On the long road to recovering from post-concussion syndrome, we cobbled together these helpful resources:

• Vestibular Physiotherapy
• ​Vision Therapy
• Pacing
• Physical Activity (subsymptom threshold aerobic exercise)
• Cognitive Rehabilitation
• Screen Modifications
• Sunglasses
• Indoor Lighting
• Log of Symptoms and Achievements
• Patience
• Diet
• Environmental Exposures

I’ll detail these below. Just keep in mind that every concussion is a like a snowflake, so some of these resources and ideas may help those recovering from post-concussion syndrome and others may not.

Vestibular Physiotherapy

Three body systems synchronize to give us balance – vision, the balance system in the ear, and proprioception (sense of where your body is in space). If you are suffering from post-concussion syndrome, find a physiotherapy clinic that can do a vestibular assessment to see if there are balance disturbances. If in Calgary, we would highly recommend Dr. Kathryn Schneider, a researcher-clinician in the area of concussions and physiotherapy. It took about four months of vestibular physio for my husband before he was discharged from treatment, but this can vary from person to person. To give you an idea of cost, we paid $100 per session back in 2013. Appointments started out weekly, then tapered down to every two weeks or so.

​Vision Therapy

Thankfully, Dr. Schneider, the vestibular physiotherapist, recommended my husband have an eye exam as well. My husband’s regular optometrist, Dr. Brent Neufeld, did a more thorough eye exam than a typical optometrist and determined that my husband had convergence insufficiency and problems with saccadic eye movements. Dr. Neufeld then did a more comprehensive visual assessment through his vision therapy practice. If in Calgary, we would highly recommend his vision therapy clinic, Calgary Vision Therapy. If not in Calgary, try to find a local vision therapy program. Most large Canadian cities should have one. It took almost a year and a half of vision therapy to correct my husband’s visual disturbances, which seems like a long time (and it’s expensive), but it was worth it. I don’t think my husband would be where he is today without this therapy. To give you a sense of cost, we paid $76 for the initial assessment in 2014 and about $450 for each month of vision therapy.

Convergence insufficiency is a common visual disturbance after a concussion. There was research evidence backing up the use of vision therapy for convergence insufficiency. In fact, the Mayo Clinic indicates office-based therapy with home exercises (like Dr. Neufeld’s clinic) is the most effective treatment for convergence insufficiency, so we felt fairly confident this therapy would help. There wasn’t too much research at the time for the use of vision therapy with other visual disturbances, but that may have changed. If you notice you feel clumsy, have trouble with depth perception, or have trouble reading, these could be indications of a visual issue.

Pacing

Pacing was the advice of the physician at the brain injury clinic. Don’t do too much, but don’t do too little. Do what you can and stop when you are starting to feel a bit tired. Take breaks and work in small segments, if possible. Try not to fall of the “cliff” (which is what we named the crash that came with doing too much). Falling off the “cliff” will inevitably happen sometimes because it can be difficult to judge when you are approaching the cliff. Sometimes you can only look back and see the “cliff” after you’ve fallen off of it, but that can help for next time. Gradually, you will be able to do more as you pace.

Physical Activity

At the time of my husband’s accident, there was emerging evidence that doing physical activity at a level just below producing post-concussion symptoms (i.e. subsymptom threshold aerobic exercise) could be helpful in recovery. I have included links to several articles from a research group in Buffalo, New York, that I found helpful to understand this approach at the time. From skimming the recent research from this group, it seems the evidence continues to build for the effectiveness of subsymptom threshold aerobic exercise.

PDF of articles at these links:

• Return to Full Functioning after Graded Exercise Assessment and Progressive Exercise Treatment of Postconcussion Syndrome
• Rehabilitation of Concussion and Post-concussion Syndrome

Download a pdf of these articles from these web pages:

• A Preliminary Study of Subsymptom Threshold Exercise Training for Refractory Post-Concussion Syndrome
• Reliability of a Graded Exercise Test for Assessing Recovery From Concussion
• Exercise Treatment for Postconcussion Syndrome: A Pilot Study of Changes in Functional Magnetic Resonance Imaging Activation, Physiology, and Symptoms
• Rehabilitation Strategies for Prolonged Recovery in Pediatric and Adolescent Concussion
• Management of Concussion and Post-Concussion Syndrome

Read the abstract/summary from this web page and request the full article from the authors:

• Exercise for Sport-Related Concussion and Persistent Postconcussive Symptoms
• Rehabilitation of Concussion and Persistent Postconcussive Symptoms

Cognitive Rehabilitation

My husband did some cognitive rehabilitation programs through CBI Health in Calgary. These were sessions that worked on things like processing speed and memory. I don’t think this was a major factor in my husband’s recovery, but as I mentioned before, each concussion is like a snowflake, so I could definitely see these therapies being useful to someone who had concussion effects that were more in the realm of cognitive skills.

Screen Modifications

Screens were a big obstacle for my husband. In the beginning, less than a minute on a handheld device, like a smartphone, would produce symptoms for him. Vision therapy helped to work on this, but there were some modifications that my husband made that helped as well. At home, we bought a BenQ monitor with really good video adjustments, including a low blue light feature. If your monitor or devices have this feature, you might want to try the low blue light feature. When my husband returned to work two years after the accident, he turned the brightness way down on his computer and every couple of weeks would increase the brightness by 1 to increase his tolerance. He still sometimes has troubles with viewing new screens or certain lighting, but he is able to work a full day on his computer.

Sunglasses

My husband found wearing sunglasses outside was really helpful.

Indoor Lighting

My husband has found fluorescent and some types of LED lighting to be problematic. Halogen bulbs were okay for him, but a particular brand we bought was prone to randomly exploding. (Scary, I know. This happened twice before we stopped using this brand and read that halogens in general are more prone to exploding.) We are now trying out LED light bulbs with a high color rendering index (CRI, 90 or above) and a warm colour temperature (2700k). We bought GE Relax HD LED bulbs at Lowes. They seem to be working okay for my husband, and they don’t explode, so I think we’ll be sticking with them. My husband is also interested in trying out some ultra-high CRI light bulbs from Waveform Lighting. We haven’t ordered any yet but will update once we try them out.

Log of Symptoms and Achievements

My husband kept a log of symptoms and achievements to track his improvement. Because improvement can be very slow, it was helpful to be able to look back a few months and see actual improvements. Symptoms and achievements can vary day-to-day (and can depend on things like how well you slept the night before, or if you overdid it the day before), but the log helped us know that the general trend was heading in the right direction.

Patience

It took my husband two years to successfully get back to work. He had an earlier return to work where he got sent back on leave because his employer was not happy with his abilities at that point. This was very discouraging, but the second attempt at a return to work was successful, thankfully. My husband says that it probably took 5 years for him to feel like he was working at full capacity again. This obviously can vary person to person. The prevailing medical opinion is that what you get at 2 years is what you get, and there is no improvement beyond 2 years. However, I appreciated Dr. Glen Johnson’s freely accessible online book called the Traumatic Brain Injury Survival Guide. Dr. Johnson is a clinical neuropsychologist who clarifies that although it may be true that one doesn’t see improvements after 2 years on measurable outcomes (like performance on psychological tests), many of his patients report subtle but meaningful improvements beyond 2 years (e.g. fatigue decreases). You can read more about this in the chapter on “When Will I Get Better?”

Diet

Two principles guided our nutrition journey: 1) incorporate as many nutrients in our diet as possible to give the brain resources to work on healing and 2) remove potentially inflammatory foods that could impede healing of the brain. The Paleo diet can be a very nutrient-dense diet if one focuses on getting a large volume and wide variety of fruits and vegetables alongside quality protein sources. In terms of inflammatory foods, wheat was the first thing to go and we eventually ended up on the Autoimmune Protocol of the Paleo diet, which forgoes all grains, dairy, nuts, seeds, nightshades (like tomatoes and potatoes), etc. We believe that these nutritional changes helped support my husband in recovering from post-concussion syndrome. Diet alone couldn’t have helped him recover, but it supported his recovery alongside the other therapies. It’s even possible the other therapies might not have been so successful without a change in our diet.

It can be overwhelming to completely overhaul your diet all at once, so you can start changing your diet by just making small changes at first. Maybe it’s making a green smoothie a couple of times a week to get more greens in your diet. Maybe it’s swapping out a grain like pasta for cauliflower rice (I buy frozen cauliflower rice at Costco) or having a salad instead of a sandwich for lunch. I’ll be writing more about how we changed our diet slowly over the course of several months because it can be stressful to make a big change like that all at once.

Environmental Exposures

Though we didn’t do much about this when my husband was recovering from post-concussion syndrome, I do believe that reducing exposures to toxins in the home and workplace can support recovery in the same way as diet. We’ve only more recently delved into this area but have found it helpful to improve air quality as well as water quality in our house. Toxins can be things like VOCs from cleaning products, personal care products, or furniture, unseen mold, particles, etc. These exposures can cause inflammation, which doesn’t support healing. I’ll be writing more about environmental exposures in future posts.

Final Thoughts

I worked in the research field, so my inclination is to try therapies that have research evidence supporting them first. That being said, there is still a lot that is not known about concussions and post-concussion syndrome. At some point, someone recovering from post-concussion syndrome may find it helpful to try therapies that may not have any research evidence yet saying they are effective but seem to be reasonable approaches to try.

Also, if you know someone who is recovering from post-concussion syndrome and you think these ideas might be helpful to pass along, consider printing this out for your friend or loved one and encourage them to read a small section at a time to prevent fatigue.

Finally, recovering from post-concussion syndrome is not an easy process and can be a lonely road. Talking with others who have been down the same road can be helpful, so don’t hesitate to reach out in the comments section with any questions you have or contact me directly using the contact form on this website.