Brain fog: What does it even mean? How can you get help for it? (Part 1)

Setting the record straight: what is brain fog?

Sometimes it isn’t so obvious what we mean by the term brain fog. It gets tossed around in circles ranging from those sick with the common cold, to people who are aging, to those that are overworked and without their morning cup of joe. So what do we really mean by it?

Here’s my best take:

Generally, “brain fog” is shorthand for the feeling that “something is wrong with my brain.” It’s as generic as the term “pain,” with a spectrum of interpretations. It can mean anything from a mildly unpleasant head sensation, to moderate intensity fuzzy thinking, to significant cognitive debilitation.

In other words: it can refer to something as straightforward as memory problems, or as complex as all-encompassing functioning issues that impair your ability to attend to the basic activities of daily living.

It’s a nebulous term.

Yet few people give this fact the attention it deserves. Worse still, most of us think we’re on the same page, when in reality we may be chapters apart. This is particularly problematic with brain fog that falls on the severe end of the spectrum, mentioned in a setting where everyone else has only ever conceived of the mild version.

Think of a young patient with an acquired brain injury, trying to engage with the healthy peers around her. Or think of a student who’s afflicted with a sudden-onset neuropsychiatric disease, on her first attempt to seek medical help from a University Health Centre that’s used to prescribing more sleep to stressed out undergrads.

In circumstances like this, a serious complaint of brain fog often gets underestimated—or drowned out completely in a sea of noise.

How would I know? That was me, in both of the situations described above.

If you’ve ever found yourself lost in translation while using the term, or if you’ve ever had trouble finding the words to describe the cognitive troubles you face, this series of blog posts is for you. Today we’ll explore the meaning of brain fog, recall some of my personal experiences trying to find help for it, and discuss a more nuanced way to understand what the term encompasses.

Let’s dive in.

Origins of the term and my first brushes with it

“Brain fog” was my primary complaint the first time I consulted with Dr. Google—back when I knew my now-chronic illness as simply new, unnerving symptoms.

This was in 2014, shortly into a flu-like illness that knocked me off my feet. The term was the simplest way I could come up with to describe the strange cognitive sensations in my head, ones which I hoped could be remedied with whatever insight Dr. G would give me.

Alas, the search fell short.

Usage of the phrase was not quite as prolific then as it is today, as evidenced by the increase in search query volume pictured in the graph above. You might think its heightened foothold in mainstream vernacular would equate to better medical recognition and ways to address it; however, I’d argue the opposite.

The more patients mention it, the less clinicians pay attention. It’s a paradox.

Doctors gloss over the symptom as an unremarkable finding and assume it’s just part of your package deal—the one you got when you developed your insert-name-of-condition-here or simply aged-and-found-yourself-over-the-hill.

As a result, there’s little sympathy for its impacts and little done to directly address it. But in certain cases, this disregard is a major medical oversight.

When brain fog deserves closer examination

As I discovered in 2019, my 5 years of unexplained brain fog after a flu-like illness was caused by autoimmune encephalitis: serious brain inflammation caused by my immune system attacking healthy tissue. In the most severe cases, it’s life-threatening.

Now, I’m not suggesting that this is a common culprit of cognitive deficits. Autoimmune encephalitis is considered a rare illness, though its relatively recent discovery (circa 2007) and increased rates of diagnosis suggests it’s more common than doctor’s realize.

But generally speaking, I strongly believe alarms should be raised when brain fog:

• Is sudden in onset; or
• Accompanies other worrisome symptoms; or
• Lingers after an infection, cold, or flu; or
• Persists for weeks or months; or
• Causes significant disruption to school or work responsibilities.

The more of these of these things at play, the more cause there is for concern.

Some commonly cited causes of brain fog include stress, inadequate sleep, poor diet, drug use, hormonal issues, medication side effects, thyroid problems, and low B12 levels. In recent times, COVID-19 and other infections are starting to be connected with the symptom. If you’ve been pushed to the point of visiting your doctor to discuss your cognitive issues, hopefully he/she will examine your lifestyle with you and run proper tests to ensure that these factors are addressed.

These are basic services/investigations; if you’re brushed off, you need to find another healthcare provider. Don’t settle for the doctor telling you “everyone loses their keys from time to time,” or “we all get a little rusty as time goes on.”

Unfortunately, many patients continue to have brain fog that defies simple explanation. If the doctor has picked the aforementioned low-hanging fruit with you, and you look or seem fine after a short 10-minute interaction, there’s a good chance that he/she will decide that’s the end of the line for you.

In my case back in 2014, I was sent away with little more than the cold comfort of hearing that “viral infections can precipitate changes in brain chemistry.” And a prescription for buproprion (Wellbutrin), an antidepressant.

No, it’s not depression or anxiety

Well, okay. I’m getting ahead of myself here—it might be.

If depression or anxiety sounds correct to you (or at least like a diagnosis worth entertaining), know that there are many medical options/therapies out there to try. I wish you strength and patience as you find the right combination to help you get your mind back. Believe that it’s possible; don’t underestimate the power of self-belief.

However, I’m speaking for those who don’t fall into this category. There’s a criminally high number of people who are slapped with a primary mental health diagnosis all too readily.

Some reasons for this include:

• The doctor might be too lazy to search harder for an accurate answer (this assertion may sound shocking and melodramatic to some, yet all too familiar to the patients that serve as living testimony to this reality); or
• The patient is temporarily exhibiting signs of stress within the medical appointment from having been tossed around by the medical system and being dismissed by multiple doctors; or
• The mental health symptoms distract from clues that another important problem might be brewing—in other words, an unknown primary diagnosis remains at large and is the root cause of the secondary mental disorder.

In these cases, there’s an underlying health issue that remains to be discovered.

If your brain fog (or any other symptom like pain, headaches, or fatigue) is blamed on your mental health, you might walk out of the doctor’s office with the gut feeling that something’s still wrong. That was me—and countless others I’ve met in the chronic illness community.

I’d hazard a guess to say that 1 in 4 of the hundreds of patients I’ve spoken to—ultimately diagnosed with ailments like multiple sclerosis, fibromyalgia, myalgic encephalomyelitis, lupus, hypothyroidism, cancer, and brain injury—have been wrongly prescribed an antidepressant at some point in their healthcare journey. Just like me.

But I had no other options at the time. The three general practitioners, one internist, and one neurologist I saw during my first few months of illness were unable to come up with another path forward.

So I took the dang pills. Though I didn’t believe depression was the source of my brain fog, I was willing to try anything to get my brain back.

A couple months later I tried escitalopram (Cipralex/Lexapro).

A year after that I tried vortioxetine (Trintellix/Brintellix).

Guess what? None of these medications moved the needle on my health. I continued to deteriorate independent of whether or not I had spent the last few months on psychiatric drugs.

I knew in my gut that something else was wrong.

Mental fog should be considered the brain’s equivalent to body pain.

When I spent summer 2019 in the hospital, it struck me how attuned to pain nurses are.

I’d be asked, unsolicited, upwards of 3 times a day: “Are you in pain? Do you need Tylenol?”

Meanwhile, I’d be thinking “Man—if only the doctors would take my brain fog concerns as seriously.” I was perfectly mobile and able-bodied; it was my brain that was malfunctioning.

But at least 4 hospital neurologists and countless other doctors handed my file around like a hot potato, reluctant to get to the bottom of concerns that rendered me relatively dysfunctional in my everyday, young adult life.

I’m recounting this experience to illustrate how easily physical pain is understood by the average person. Granted, I’m not talking chronic pain—I recognize my statement does not apply to something like fibromyalgia, another under-recognized condition. But in a basic sense, the average human has experienced a range of physical pain, enough to empathize and know that it’s an unpleasant sensation often deserving of immediate attention.

Or at least the offer of a Tylenol.

Brain fog, on the other hand? Far more misunderstood and overlooked—so much so, that some people give the “oh I’m getting more forgetful too” flavour of response, without much of a second thought. Perhaps this remark is coming from a good place of support or sympathy, but think about it: you wouldn’t respond to someone in pain with “oh my back hurts too.”

Just as the body can feel a spectrum of pain, so too can the brain feel a spectrum of mental fog. And—just like physical pain—when the fog becomes significant enough to warrant medical attention, steps should be taken to characterize:

• the % change in baseline level of cognitive functioning (parallel to “pain severity on a scale of 1 to 10”)
• The domains of cognition affected (parallel to “which body parts hurt”)
• The activities that are impacted (parallel to questions like “are you able to bathe yourself? Are you well enough to walk unassisted? Can you still complete your work tasks?”)

This is the paradigm that I wish more medical professionals would adopt. Though it probably wouldn’t lead to the brain’s equivalent of a Tylenol, at least it could lead to a more thorough level of diagnostic investigation, greater medical care, and more ready referral to appropriate rehabilitation or therapy.

The foggy road ahead

If cognitive troubles are having a heavy impact on your life and you can’t get doctors, friends, or family to makes heads or tails of what you really mean when you mention “brain fog”, try using the framework in the bullet points above. Getting the care and empathy you’re looking for begins with getting more specific with the language we use to describe what ails us.

When I first fell ill, I flailed around and relied too heavily on the generic descriptor  of “brain fog” to convey what I meant. Because I appeared to be high functioning, some doctors wrote off my issues as a mild nuisance I just had to learn to cope with—as if our inattention to the deficit would somehow make it mysteriously disappear, rendering it a non-issue.

But as dropping out of university twice and my delayed diagnosis of autoimmune encephalitis would suggest, there are circumstances where brain fog needs to be taken seriously and closely monitored.

Over time, I learned to attach a quantitative number to the self-assessment updates I give my doctor. Qualitative reports can make the overall picture murky, while raw numbers give you a concise snapshot of which direction the needle is moving. Like you can see in my monthly “Resilience Reports”, I’ll state something like “I’m fluctuating around 65-70% of my baseline levels of function.” Compared to the numbers provided during previous appointments, this helps my doctor and I in determining whether to adjust my medications.

There’s also benefit in examining the specific domains of cognition that trouble you. Though I’ve been diagnosed with autoimmune encephalitis for over a year, it was just recently that I had a doctor recommend a neuropsychological assessment to me. Based on those results, I’ve had a few forms of rehab, management strateegies, and new medications recommended to me.

Fun fact: speech language pathologists don’t just help with the mechanical production of speech. They can also provide assistance with things like cognitive-communication disorders and implementing strategies for an improved memory. It looks like I’ll now have speech therapy in the cards for the future—something I never would have thought of myself, but which I’m hopeful to try based on my issues with verbal fluency and long-term desire to return to my stalled career as a Communications/Marketing Manager.

All in all, I hope this post has enriched your understanding of brain fog and given you some ideas to help you (or a loved one) alleviate its impacts in your life. If you’d like to hear more on this subject, subscribe to my email list and stay tuned for the rest of the series ahead. The rest of this deep dive into brain fog will cover topics like:

• Types of cognitive dysfunction
• What it feels like to have a brain injury
• Strategies for managing the fog
• How to support someone with cognitive troubles

Update Dec 2022: further blogs in this series have not yet been published.

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