GENERAL FAQs
What is encephalitis?
Encephalitis is the medical term for inflammation of brain tissue. Inflammation can be localized to a single part of the brain or be widespread, and in some cases can involve the spinal cord as well. Symptoms vary depending on which part of the brain is affected. Common neurologic symptoms include: changes in cognition or mental processing (decreased level of consciousness), fever, severe headache, vomiting, seizures, or weakness in areas of the body, hallucinations, paranoia, among many others. After the acute phase (when the brain is no longer inflamed), patients can experience a wide variety of short- and long-term sequelae, or residuals.
What causes encephalitis, and how does one get it?
Encephalitis is most frequently caused by viruses or auto-immune disorders, and can be also caused by bacteria or parasites that cross the blood-brain barrier. In the United States, up to half of cases have an unknown etiology, or cause. The list of infectious agents associated with encephalitis includes more than 100 pathogens, adding to the complexity of identifying a specific cause. And the types of infection that most commonly cause encephalitis vary depending on patient age, underlying health conditions, time of year, and geography. Globally, the most common infectious causes of encephalitis are the herpes group viruses, enteroviruses and viruses spread by mosquito bites. In the last decade there has been an increasing recognition of auto-immune etiologies, especially since the discovery of anti-NMDA receptor encephalitis
Can encephalitis affect someone who is in good health?
Encephalitis can occur in patients who are healthy, as well as in those with underlying health conditions. Individuals with decreased immune system function are at risk for a larger variety of infections that cause encephalitis, and may have more severe presentations of infection. Encephalitis can be a complication in immunosuppressed patients.
Are there special considerations for encephalitis in children?
Encephalitis can have a unique presentation and disease course from case to case, regardless of age at onset. Diagnostic tools, treatment guidelines, and prognosis are generally similar whether the patient is pediatric or adult; though there are sometimes differences depending on the specific type of encephalitis. Compared to adults, pediatric patients may be considered to have a broader differential diagnosis, and pediatric autoimmune encephalitis is less associated with tumors.
It is not uncommon for pediatric patients to require intensive rehabilitation services (e.g. with a speech language pathologist, occupation therapist, physiotherapist, or psychologist) in order to regain cognitive, communication, social, or motor skills. Special education services and Individualized Education Programs (IEP) may be considered in order to assist the patient with reentry into school.
Caregiver burden is particularly high for pediatric encephalitis patients. Our caregiver page provides additional insight into this topic.
It is not uncommon for pediatric patients to require intensive rehabilitation services (e.g. with a speech language pathologist, occupation therapist, physiotherapist, or psychologist) in order to regain cognitive, communication, social, or motor skills. Special education services and Individualized Education Programs (IEP) may be considered in order to assist the patient with reentry into school.
Caregiver burden is particularly high for pediatric encephalitis patients. Our caregiver page provides additional insight into this topic.
A huge percentage of the population carries the herpes virus. Why do some develop encephalitis and others do not?
The spectrum of infection due to the herpes simplex virus (HSV) is extremely varied. Some never have symptoms (asymptomatic infection). Common manifestations in those who do develop symptoms are recurrent localized lesions around or inside the mouth (cold sores), or in the genital region (genital herpes). Encephalitis due to HSV is quite rare. Newborn infants of mothers with active genital herpes at the time of delivery are at increased risk of HSV disease including encephalitis, particularly if it is the mother’s first episode of disease. The reason for the increased neonatal risk when the mother’s first genital herpes episode occurs just before or at delivery is, at least in part, related to the fact that the mother would not have had time to develop protective antibodies to pass on to the baby through the placenta prior to delivery. The reason so few older children and adults get HSV encephalitis is not fully understood. In most cases there is no obvious explanation. However, there is increasing evidence that rare abnormalities of the immune system may predispose certain individuals to HSV encephalitis.
What's the difference between encephalitis and meningitis? What is meningoencephalitis?
Meningitis refers to inflammation of the meninges, the membranes that envelop the brain; whereas, encephalitis refers to inflammation of the brain itself. The term meningoencephalitis is used when both the meninges and the brain are inflamed. The symptoms and signs of these conditions overlap significantly. In general, meningitis is characterized by fever, headache, vomiting, photophobia (light sensitivity), and clinical signs of irritation of the meninges such as neck stiffness. The clinical manifestations of encephalitis depend on the area of the brain affected, but often include an altered or reduced level of consciousness, seizures or focal neurologic deficits. Both meningitis and encephalitis can be caused by many different infections as well as non-infectious conditions.
Can someone get encephalitis a second time?
For an otherwise healthy person it would be unlikely to get encephalitis a second time, even though it is possible. It is possible because there are many different etiologies or causes of encephalitis. It is important to note, however, that the risk of getting infectious encephalitis is not higher in those who had a previous episode of encephalitis, assuming their immune system is normal. In persons who are immunocompromised, such as those with HIV infection, the risk of having encephalitis a second time may be higher. Auto-immune causes of encephalitis can have relapses while infectious types of encephalitis can have setbacks.
Is there a vaccination that prevents encephalitis?
There is no single vaccine to prevent encephalitis since there are so many causes, some of which are preventable. However, there are vaccines that can prevent specific types of encephalitis. Measles, mumps and varicella used to be relatively common causes of encephalitis – these are now quite rare in developed countries such as the U.S. due to routine childhood immunizations, but are still present in other areas that do not use the vaccines widely. There are also vaccines that can prevent encephalitis due to the Japanese encephalitis virus, tick-borne encephalitis, yellow fever virus and rabies. Prior to travel outside the U.S., it is recommended that one seek advice on the need for these vaccines with a medicine travel agency. While COVID-19 can cause encephalitis, it is too soon to know if the vaccines can prevent encephalitis.
What are common misdiagnoses for encephalitis?
There are many conditions that can present like encephalitis with an altered or reduced level of consciousness or with seizures. Examples of these conditions include intoxication or drug abuse, very low blood sugar, stroke, epilepsy, complicated migraine, flu, and even brain tumors. In young children, febrile seizures can sometimes occur at a high frequency during a fever illness and lead to the child being very drowsy. Some rare genetic disorders of metabolism can also present like encephalitis, mostly in children. Because the symptoms and signs of encephalitis are non-specific and overlap with many other conditions, it is important to have a very detailed assessment that includes blood tests, analysis of the spinal fluid and imaging of the brain.
How does someone connect with others impacted by encephalitis?
In addition to Encephalitis411’s website and Facebook presence at https://www.facebook.com/Encephalitis411.org, the Encephalitis411 discussion forum on Inspire.com is the largest global online support network with more than 10,000 members worldwide. This group also has a very active Facebook presence at www.facebook.com/groups/encephalitisglobal.
In the U.S., Encephalitis411 has a medical faculty, board members, and volunteers who understand the journey, and provide a free hotline and other free services. These groups provide a place of understanding and support for encephalitis survivors and caregivers, as well as the bereaved.
There are several other nonprofits that serve the encephalitis community that are part the World Encephalitis Day Alliance. These include the AE Alliance, the Anti-NMDA Receptor Encephalitis Foundation, the Encephalitis Society, and the Hashimoto’s STREAT Alliance.
In the U.S., Encephalitis411 has a medical faculty, board members, and volunteers who understand the journey, and provide a free hotline and other free services. These groups provide a place of understanding and support for encephalitis survivors and caregivers, as well as the bereaved.
There are several other nonprofits that serve the encephalitis community that are part the World Encephalitis Day Alliance. These include the AE Alliance, the Anti-NMDA Receptor Encephalitis Foundation, the Encephalitis Society, and the Hashimoto’s STREAT Alliance.
I’ve been exposed to the same foods, environment, etc. as my loved one who has encephalitis. Am I at risk?
Even when one shares food and/or other environmental exposures with a person with encephalitis there is little risk of transmission. If there are concerns about whether someone may be at risk for transmission, it is important to discuss these concerns with a physician, who can best determine if additional evaluation is indicated.
FAQs ABOUT THE ACUTE PHASE OF ENCEPHALITIS
Is there a cure or specific medicine for encephalitis?
Some forms of encephalitis can be prevented through routine vaccinations, such as for measles, mumps and varicella. Also, there is a vaccine for Japanese encephalitis, widespread throughout Asia. Some forms of infectious encephalitis are treatable with medications, such as those caused by herpes viruses (acyclovir). There are still other forms of encephalitis that result from a patient’s own immune system attacking the brain (“auto-immune”). These require very different treatments, and often have good recovery.
What kind of doctor treats a person with encephalitis?
Patients with encephalitis benefit from a comprehensive team approach to their care that often includes physicians, nurses, rehabilitation therapists, friends, family, and advocates. The most common clinicians include neurologists, neuropsychologists, internists, immunologists, infectious disease doctors, psychologists, and psychiatrists. Some patients with encephalitis have milder cases than other patients, and this can affect the number of healthcare providers that are needed for appropriate treatment. Depending on the cause of encephalitis, the services of an infectious disease specialist, neurologist, critical care physician, or rheumatologist might be required.
Which test(s) should be run on a person with encephalitis?
The number, variety and frequency of tests that should be run after a patient is diagnosed with encephalitis often depends on how severe the encephalitis is. Patients will generally require blood tests, a lumbar puncture to obtain a sample of cerebrospinal fluid (the fluid that surrounds the brain) and radiographic imaging of the brain (such as a CT or MRI scan). It is helpful for the healthcare team to obtain a thorough medical history, as this can provide clues as to the cause of encephalitis and might impact the choice of tests to be conducted. A patient’s location in the world can also make a difference, because the common causes of encephalitis differ depending on where someone is located. It is helpful for the medical team to conduct a thorough medical history, including recent travel and animal exposure.
Is encephalitis contagious? Should a person with encephalitis be quarantined?
Some of the causes of encephalitis such as enterovirus, COVID-19 or herpes are contagious while other forms are not, and this is one reason it is important to find out the underlying cause when a patient has encephalitis. The vast number of patients with encephalitis would not require quarantine. Early determination of the cause of encephalitis allows public health specialists to act quickly, if necessary, to prevent other people from getting sick, too.
FAQs ABOUT THE LONG-TERM EFFECTS OF ENCEPHALITIS
My loved one has had encephalitis. Will their brain improve? Will they ever be normal again? Will our life together ever be the same again?
The brain can heal, but because encephalitis has so many different causes and some areas of the brain are able to tolerate more damage than other more critical areas, the consequences of encephalitis will largely depend on the cause and the location/extent of the brain injury. Many patients do not completely return to their pre-encephalitis state of functioning. However, the brain exhibits the property of “neuroplasticity,” which means that it can rewire certain functions to be taken over by other areas of the brain that have not been injured. This occurs to a greater extent the younger the patient.
So the brain will improve, but the extent of recovery will vary. Additionally, improvements may occur in spurts that are interspersed with periods of plateauing with no noticeable improvement. Even in periods where improvement is not measurable, it is believed that the brain is consolidating and learning new information, making these periods just as important. Brief setbacks should not lead to discouragement, as recovery from encephalitis is not a straight slope, but can take a rather more circuitous route.
So the brain will improve, but the extent of recovery will vary. Additionally, improvements may occur in spurts that are interspersed with periods of plateauing with no noticeable improvement. Even in periods where improvement is not measurable, it is believed that the brain is consolidating and learning new information, making these periods just as important. Brief setbacks should not lead to discouragement, as recovery from encephalitis is not a straight slope, but can take a rather more circuitous route.
I had encephalitis and have been told that I need extensive rest; however, I want to get back to “life” and I want to return to work. How much rest do I really need?
A progressive return to work or other activities is recommended, similar to what is recommended for post-concussive type syndromes or strokes. The rate of this will vary considerably depending on each patient, but usually one would build up slowly in terms of time increments and complexity of tasks reintroduced. Someone affected by encephalitis should also “listen to their body” – resting on days they feel very fatigued and resisting the urge to over-work themselves. Each patient should check with their medical team for advice in their particular situation.
I had encephalitis and have been told that I need extensive rest; however, I want to get back to “life” and I want to return to work. How much rest do I really need?
A progressive return to work or other activities is recommended, similar to what is recommended for post-concussive type syndromes or strokes. The rate of this will vary considerably depending on each patient, but usually one would build up slowly in terms of time increments and complexity of tasks reintroduced. Someone affected by encephalitis should also “listen to their body” – resting on days they feel very fatigued and resisting the urge to over-work themselves. Each patient should check with their medical team for advice in their particular situation.
Are there medications or foods that an encephalitis patient should avoid?
Any medications or substances that cloud one’s thinking can make the cognitive difficulties following encephalitis more challenging. Some medications are not recommended for a person who has experienced a brain injury; therefore, it is important to always communicate health history to avoid complications, and to discuss all medications with your physician
Is it normal for an encephalitis patient to experience headache, fatigue, memory issues, etc.?
Sequelae, or residuals, vary from person to person. Some of the more common sequelae include excessive fatigue, frequent headache, short-term memory loss, problems with balance, seizures, slurred speech, visual impairment, motor issues, behavior changes, and tingling sensations among a wide number of other symptoms that often plague patients for a lifetime. Patients’ sequelae vary based on the area(s) of the brain affected. Keeping an updated list of symptoms and tracking them according to intensity and duration can significantly help a treating physician.
FAQs ABOUT TREATMENT AND REHABILITATION FOR ENCEPHALITIS
What are the more common sequelae, or residuals, following encephalitis? Is there treatment or therapy for these sequelae?
Some patients may have mobility or coordination issues. Others may have speech difficulties. Still others may have seizures. Ongoing cognitive challenges are also common, leaving the patient struggling with focus/concentration, multi-tasking or complex planning.
Physical therapy, occupational therapy, speech/language therapy, and cognitive therapy are all possible rehabilitation modalities. Some sequelae can lead to frustration, anxiety or depression. Several of the residuals are “invisible,” leaving the patient with a sense of isolation. Seeking psychological care is important for changes in mood or sense of well-being.
It is essential to remember that progress is usually slow in coming, and rehabilitation can take months, even years.
Physical therapy, occupational therapy, speech/language therapy, and cognitive therapy are all possible rehabilitation modalities. Some sequelae can lead to frustration, anxiety or depression. Several of the residuals are “invisible,” leaving the patient with a sense of isolation. Seeking psychological care is important for changes in mood or sense of well-being.
It is essential to remember that progress is usually slow in coming, and rehabilitation can take months, even years.
Following encephalitis, does the brain need to “rest” for a certain period of time before beginning extensive therapy for these sequelae?
This will vary widely by patient. For the more physical limitations, physical and speech therapies may commence soon after the acute phase. For some of the cognitive and behavioral therapies, some medical professionals prefer for a few months to pass before starting a newer therapy that will stretch thinking. A guideline is for the patient to pursue therapies as they can tolerate, but not push to an excess as this could cause a patient to become further fatigued and discouraged.
Where does one find rehabilitation therapies during recovery from encephalitis? What sort(s) of facility is helpful?
While often difficult to access in smaller communities, comprehensive multidisciplinary programs such as those offered for traumatic brain injury patients are of significant benefit. Even in rural areas, families now have access to apps on their smart phones that can be instrumental in the rehabilitation process. Some guidelines for common sequelae and their general treatment methods are as follows:
All of these therapies are best coordinated by a physiatrist. A physiatrist is a doctor who specializes in rehabilitation medicine and can keep an overview of a person’s progress in all of these areas, including medications.
- Mobility issues – physical therapy support
- Coordination or fine motor issues – occupational therapy and assistance with daily living activities
- Communication or swallowing difficulties – speech and language pathologists
- Seizures – a neurologist or epilepsy specialist should follow a patient
- Memory or thinking difficulties – a cognitive rehabilitation specialist or neuropsychologist
- Depression or changes in behavior – psychologist, psychiatrist or behavioral therapist
All of these therapies are best coordinated by a physiatrist. A physiatrist is a doctor who specializes in rehabilitation medicine and can keep an overview of a person’s progress in all of these areas, including medications.
