In a year with a worse-than-usual flu season, it can be easy to get caught up looking for signs of influenza. It’s definitely a good idea to be vigilant; it’s also wise to get to know the symptoms of other conditions that may be similar to those of the flu, like encephalitis.
In case you’re not familiar with the term, encephalitis is inflammation of the brain. According to Dr. Ava Easton, the chief executive officer of The Encephalitis Society, it is caused, broadly speaking, one of two ways: either through an ordinary infection (like the flu, the cold sore virus or the measles) or when a person’s own immune system “goes rogue” and attacks their brain. Though encephalitis has a high mortality rate compared to other neurological conditions, Easton says 8 out of 10 people have not heard of it.
Here’s some background on the condition, including what to look out for and how it’s treated.
The tricky part about identifying encephalitis is that many of the symptoms are similar to those you get from other types of infections — especially a fever, Dr. Michel Toledano, a neurology specialist at The Mayo Clinic and member of the Scientific Advisory Panel of The Encephalitis Society tells SheKnows.
“Some people can also develop muscle aches and feeling under the weather,” Toledano explains. “Other people go on to have memory difficulties, psychosis, movement abnormalities as well as seizures. Usually, it’s a combination of them. In most cases, symptoms develop rather quickly.”
So, how do you know if it’s a cold or flu or encephalitis? Toledano says that the sudden explosion of neurological symptoms is the most obvious sign. For example, a person could have a cold one day and by the next morning have developed strange behaviors and appear to be confused, and by that afternoon they could develop seizures and be admitted to the intensive care unit.
On the other hand, it could happen more gradually, developing slowly over a few days to a week.
“The presentation can vary,” Toledano says. “Unlike just the flu, where people can get really sick with cough and high fever, what makes it encephalitis are more of the symptoms affecting the brain.”
But unlike the mental fogginess that comes along with colds and the flu, encephalitis brings with it “a more pronounced confusion where people around you are worried,” Toledano explains.
The cause of encephalitis can be a determining factor in how it presents. For instance, Toledano notes, encephalitis brought on by infectious diseases have more of rapid onset, while cases caused by autoimmune complications tend to be slower. Also, mosquito or tick bites could be the source of the infection that causes encephalitis, so he recommends avoiding these insects whenever possible.
Given the familiarity of many of the symptoms of encephalitis, it can be hard to diagnose. Luckily, though, Toledano says that as more people are becoming aware of encephalitis, they’re paying more attention to the symptoms, and medical professionals are more likely to investigate the possibility of encephalitis, meaning there’s less delay in diagnosis compared to the past.
According to Toledano, there are two ways to test for encephalitis: an MRI of the brain and a spinal tap. The MRI will show any abnormalities — including inflammation — of the brain, while a spinal tap will show other signs of inflammation, like a certain elevated protein or the presence specific antibodies known to be associated with autoimmune encephalitis. Typically, both diagnostic techniques are used — not only to confirm it is encephalitis, but also to help determine the cause (infection or autoimmune), which in turn, dictates the treatment.
There’s some good news: Toledano says encephalitis is very treatable. Autoimmune encephalitis is treated by using immunosuppressant medication, while cases caused by infection are treated by targeting the specific microbe causing the encephalitis as well as treating the various symptoms, like seizures.
However, the effects of the treatment vary depending on the patient and could leave them with permanent conditions.
“Because it is affecting the brain, in some ways it’s affecting your personality and memory, and in many ways, who we are as people,” Toledano says. “Some of the patients who get through initial stages can be left with epilepsy or symptoms similar to traumatic brain injury. Some people are left with cognitive difficulties and memory and personality changes that can be permanent, which can be variably responsive to therapy after the fact.”
Even once a person has finished treatment for encephalitis, they may still face a long road to recovery. And in some cases, they may never return to the same level of brain function they had prior to having the condition. In fact, an important component of the work of The Encephalitis Society is helping people cope with life after encephalitis.
“Many survivors are left with an acquired brain injury afterwards and not able to attend to previous roles or [be a] functioning member of society,” Easton explains. “Even when the person survives, their family experiences a complicated form of bereavement for the person they once knew.”
The Encephalitis Society started World Encephalitis Day back in 2014 to raise awareness about the condition because they found that most people hadn’t heard of it until it directly affects them or someone they know. By 2017, the campaign reached more than 40 million people worldwide, Easton says.
Part of that is thanks to their BrainWalk app, which functions as a step-tracker and allows people to join from anywhere in the world and help the organization work toward their goal of getting the 52.8 million steps required to virtually walk around the world. For those who are unable to take physical steps, the app has brain games and puzzles they can complete and convert over to steps. Users of the BrainWalk app can also use it to communicate with each other — something Easton says can help alleviate the loneliness and isolation many people feel while recovering from encephalitis.
In addition, The Encephalitis Society provides a range of services to survivors of encephalitis and their families, including offering free consultations tailored to their specific needs via online chat, email, Skype and telephone calls.
As far as advice, Easton recommends people with encephalitis don’t try to do too much too quickly.
“People often underestimate the amount of rest and recuperation that they require,” she adds. “It’s our natural desire to get back to work ASAP. It’s not always the best way to approach this… People try to forge on much earlier than they were supposed to do… Their new capacity for normal is often different to where it was.”