plastic transparent skull and brain in museum

I want to share some facts and myths about concussions and post-concussion syndrome, just in case this information helps someone out there.

From personal experience, I know that searching on the Internet for answers to concussion and post-concussion syndrome issues is a bit of a paradox. When I’m experiencing symptoms, I don’t feel well enough to search for such information on the Internet. When I’m feeling well, I don’t feel motivated to search for such information on the Internet.

But there have been moments when I was both motivated and able to search, and those searches were occasionally fruitful, as I will describe below. Some readers of this blog post may indeed be sufferers of concussion or post-concussion syndrome. And there may be many instances of people searching for information on the Internet because they want to help a loved one.

Following are some of the most important facts and myths about concussions and post-concussion syndrome that I have learned during my own journey through these illnesses. Note that this is a personal and random list. I am not attempting to be comprehensive. I am also not a doctor, and you should not take any of this as medical advice. This is simply a list of some of the most important facts—some of which are mythbusters—I’ve learned since my injury in September 2019.

There are risk factors for experiencing longer-lasting concussion symptoms.

I have most of them.

Rick factors that I have include the following:

  1. Prior concussion(s). (Twenty years ago, I was knocked out in a car accident. The only symptom I experienced was a woozy headache for the rest of the day. The following day, I was fine. Twenty years later, I wasn’t even knocked out, and I experienced severe symptoms that have lasted 15 months and counting.)
  2. Migraines.
  3. Anxiety.
  4. PTSD. (I had been diagnosed with PTSD prior to the concussion. For some people, PTSD results from the concussion itself.)
  5. Being female.
  6. Increasing age.

Brain rest is NOT the most important key to recovery.

When I got my concussion, I was urged to practice “brain rest” by three different people in my life: a family member, a coworker, and a friend. In the early days, I tried to do as little as possible, per their advice. Later, I learned that this mode of treatment is outdated and ineffective, and it tends to make symptoms worse. The need for “brain rest” to the exclusion of all activity is a myth. It’s not the fault of my family member, coworker, or friend that they gave me that advice. That used to be the prevailing wisdom in the medical community, and they were simply repeating what they had heard from doctors.

But here’s what more recent medical research says: Like any other injury, the key to recovery from a concussion or post-concussion syndrome is to rest when necessary, but otherwise very slowly increase your activity level. The key is to listen to your body and slowly but surely do more and more. Don’t start exercising right away, if you feel awful. But at a certain point, when you can tolerate it, start exercising lightly, such as by walking. Exercise is important to pump blood through your brain and accelerate healing. Also slowly increase other types of activities. A good physical therapist can guide you through this process and give you specific exercises to target certain functions of the brain.

The brain can fully heal from the original injury (concussion), but remain out of proper configuration and continue to produce symptoms (post-concussion syndrome).

This one has been driving me insane for months, but I think I finally understand what’s going on. My doctors have been telling me for months that my brain is fully healed. My main concussion doctor announced, six months ago, that any symptoms I was experiencing, then and in the future, were due to anxiety.

But this has to be wrong. Anxiety can cause a headache, sure. But anxiety cannot cause a 10-day episode of not being able to function, as a result of driving farther than usual. I have been feeling gaslighted by my doctor. Not a good feeling. I know that I am not actually being gaslighted—he isn’t really trying to drive me insane; he is really trying to help me!—but that’s how it feels.

For the past six months, my thoughts have been like a Zen koan:

MY BRAIN IS FULLY HEALED.
WHEN I DRIVE TOO MUCH FARTHER THAN USUAL, I EXPERIENCE SYMPTOMS FOR 10 DAYS STRAIGHT.
THERE IS NOTHING WRONG WITH MY BRAIN.
THIS IS AN ANXIETY PROBLEM.
I FEEL CALM. MY MEDS ARE WORKING. I DO BREATHING EXERCISES. I MEDITATE.
MY MEDS ARE WORKING SO WELL, I HAVEN’T FELT THIS CALM AND COLLECTED SINCE HIGH SCHOOL.
MY BRAIN IS FULLY HEALED.
THERE IS NOTHING WRONG WITH MY BRAIN.
I DROVE ACROSS TOWN, AND MY BRAIN ACTED AS IF I HAD RIDDEN 500 ROLLAR COASTERS IN A ROW.
IT TOOK ME 10 DAYS TO BE ABLE TO READ, DO LAUNDRY, RUN, AND USE THE COMPUTER AGAIN.
THERE IS NOTHING WRONG WITH MY BRAIN.
I DON’T FEEL PARTICULARLY ANXIOUS.
I DON’T FEEL PARTICULARLY ANXIOUS WHILE DRIVING.
I MUST’VE BECOME UNABLE TO RECOGNIZE MY OWN ANXIETY.
I MUST BE CRAZY.
MY BRAIN IS FULLY HEALED.
I RODE THE BUS AROUND TOWN.
WHEN I ARRIVED HOME, IT FELT LIKE SOMEONE WAS INFLATING A BALLOON INSIDE MY HEAD.
FOR THE FOLLOWING WEEK OR TWO, I LISTENED TO A TON OF PODCASTS, UNABLE TO DO MUCH ELSE.
MY BRAIN IS FULLY HEALED.
CLEARLY, THERE IS SOMETHING WRONG WITH MY BRAIN.
MY BRAIN IS FULLY HEALED.
THERE IS CLEARLY SOMETHING WRONG!
IF YOU WOULD JUST RELAX AND REALIZE THAT NOTHING IS WRONG, THEN NOTHING WOULD BE WRONG!
I JUST DROVE ON THE HIGHWAY FOR 45 MINUTES: A NEW RECORD SINCE THE CONCUSSION.
WHEN I WAS THREE BLOCKS FROM HOME, SOMEONE STABBED ME BEHIND THE EYES, OR SO IT SEEMED.
AFTER THAT, I COULDN’T FUNCTION FOR DAYS AND DAYS AND DAYS AND DAYS.
MY BRAIN IS FULLY HEALED.

This website created by a Scottish neurologist saved me from this cycle of paradox.

According to this Scottish neurologist, my doctor and I are both right; but neither of us is thinking about the situation correctly. (Or, if my doctor is thinking about it correctly, he did not successfully communicate it to me.)

My doctor is correct in some ways. He is correct that my brain has healed from the original concussion. He is also correct that anxiety can cause people to experience symptoms and have a prolonged recovery.

I am also correct in some ways. I am correct that there is something wrong with my brain, which resulted from the concussion, and which is not anxiety. I am also correct that solving my anxiety will not solve my post-concussion syndrome.

Here is the (astonishing!!) wisdom from the Scottish website, written as succinctly as I can write it:

After a concussion, the “volume” of pain and sensory signals increases in the brain (I assume this is an evolutionary adaptation to prompt the person to get enough rest for healing?). Normally, as people recover and increase their activity level, the “volume” gets turned back down. But for a small percentage of people, the “volume” is not turned down when it should be. These people experience post-concussion syndrome, which is, in the words of the Scottish doctor, “abnormal nervous system and brain functioning.” It is NOT brain damage. It is NOT the case that the concussion did not fully heal. Rather, the blow to the head triggered (how is not clear to me; apparently this happens during injuries to other body parts, too?) some sort of altered configuration in the brain, whereby pain and sensory signals blaze through inappropriately.

Thus, even though my brain has healed from the concussion, it remains in an abnormal state of functioning, whereby I am getting pain and dizziness signals even though my brain is fully operable. When I experience a flareup of these abnormal signals, they usually last for 10 days. To get the signals to go away, I have to slowly do a little bit more and more every day for that 10-day period. Otherwise, I get stuck in unrelenting pain and dizziness. This is what happened to me last year.

I recently realized that there is an interesting link between my migraines and my post-concussion syndrome: both last 10 days. My migraines last EXACTLY 10 days, slowly becoming less severe with each passing day. My post-concussion syndrome commonly lasts 10 days, sometimes only 5 days. Isn’t that interesting? I wonder what it is about 10 days and my brain.

I would like to write a future blog post called “How to Cure Post-Concussion Syndrome.” But I can’t write it right now, because I don’t know how. But there’s good news: I’m pretty sure my new vestibular-ocular physical therapist knows how!

And, yes, physical therapy helps. Sometimes. That is, it helps when it doesn’t cause a 10-day episode of symptoms, which it often seems to. Throughout my illness, I have run into the problem of successfully doing a new exercise with a physical therapist, but then needing to get home, while my brain was tired from doing the new exercise, and experiencing a flareup during the process of traveling home by car or bus, resulting in a 10-day episode.

But when I can get into a pattern of successfully doing an activity or PT exercise at a level that I can tolerate, and slowly increasing the time or difficulty of the activity, that seems to work. I have been increasing by 10% after 5 times of doing an activity. If I do the activity 5 days per week, that’s a 10% increase per week. That’s all I seem to be able to tolerate.

It’s not a lot. But it’s something.

And it’s way more than just “brain rest” or “working on my anxiety.”

Certain foods and supplements help with concussions.

My doctor recommended fish oil supplements. I noticed that taking these, as well as eating actual fish, REALLY helped. It made my brain feel nourished and less symptomatic. But this was in the early weeks and months. I am no longer noticing this effect. The type of healing needed for a concussion differs from the type of healing needed for post-concussion syndrome.

(Of course, fish and fish oil are good for one’s diet in any case!)

My doctor also strongly recommended vitamin D, calcium, and not being chronically dehydrated. So I try to keep up with those things.

The ultimate brain rest, AKA sleep, is super important.

I have been blessed with the ability to sleep on command. This has not been an issue for me, but concussion doctors are always inquiring about the quality and quantity of my sleep. Sleep is important, especially when you have an injury. Brain rest isn’t all bad. . . .

That’s all I can think of right now.

Having a concussion or post-concussion syndrome is no fun. But one silver lining is that it’s interesting to get this weird, first-hand view of my own brain. When it’s not working properly is when I can really notice how it works. Maybe I’ll write more on that topic at some point.

I hope you were able to navigate the haphazard nature of this blog post. When you’re in the middle of a crisis, it’s hard to see it clearly and objectively. I’m wading through, and I can’t quite grasp everything around me; but I’m doing my best to decipher at least some of the important bits. In particular, writing about post-concussion syndrome in this blog post helped me more completely understand it; and I hope that reading about it here helps someone out there in the world understand it, too. There’s not enough awareness about and understanding of post-concussion syndrome.

My new hero, the Scottish neurologist, notes on his website that there is stigma against functional neurological disorders—including post-concussion syndrome—among health professionals. Among health professionals! I experienced this firsthand, and it was an unnecessary trauma added on to my other traumas. Functional neurological disorders are real and treatable. I understand this now. And, I have a new vestibular-ocular (read: balance and vision) physical therapist who believes in post-concussion syndrome and knows how to help sufferers like me. Praise!!

Did this blog post help anyone out there? Please leave me a comment or send me a note. Misery loves company. . . .


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