Physical difficulties after encephalitis

Fatigue

Fatigue is a common symptom after encephalitis with many patients describing fatigue as being one of most disabling symptoms of their after-effects (acquired brain injury). Fatigue is closely linked to sleep disturbance and other consequences such as cognitive, emotional and behavioural difficulties. Fatigue may be a direct result of injury to the brain or be caused by the increased ‘neurological effort’ required to compensate for lost skills and abilities.

Fatigue after an acquired brain injury (ABI) is different to fatigue due to other causes in that

• it has a sudden onset post brain injury
• it is intense
• it has more than one component, including cognitive, physical and emotional aspects
• it can only be ameliorated by mental rest and/or sleep

Even activities which are considered to be relaxing such as reading a book or watching television can be tiring for a person that experiences neurological fatigue following ABI. Fatigue can have a huge negative impact on overall quality of life and tends to exacerbate other problems. It can result in anxiety, depression, guilt and anger, making return to work/education and participating in social activities sometimes impossible. For detailed information on how to manage fatigue after encephalitis please refer to our Managing fatigue after encephalitis factsheet.

Headaches and pain

Headaches are common following an ABI which may result from encephalitis. We don’t know for sure why it happens. Headache, for example, may happen because of stress and tension, when the person tries to do too much, or may be a sign of anxiety. Cognitive and behavioural functioning of an individual are influenced by pain. Pain is also associated with depression. It is important to notice pain characteristics such as start, duration, location, triggers, as well as any psychological factors and relief indications. A referral to a neurologist or a pain clinic may be beneficial.

Seizures/epilepsy

Seizures are common during the initial stages of encephalitis, when people are typically quite unwell in hospital. In some instances, they can be quite difficult to bring under control and may need a period in the intensive care unit.

Seizures may also occur at a later stage, well after the acute illness is over. This is because the after effects of the inflammation of the brain in encephalitis may leave the brain cells more likely to produce the bursts of abnormal synchronized activity which cause seizures. When seizures occur in the absence of a precipitating factor (such as the acute infection), they are known as ‘unprovoked seizures.’ Epilepsy is defined as a tendency to experience recurrent unprovoked seizures.

Many patients who go on to develop epilepsy after encephalitis will have had seizures during their acute illness and then continue to have unprovoked seizures after they have recovered. They have evolved from acute symptomatic seizures to epilepsy without any period of freedom from seizures in between. However, others may not have had seizures at all during the acute illness or may have had some seizures which settled, but then go on to have unprovoked seizures (epilepsy) at a later stage after the encephalitis. Although this most commonly occurs within the first year or two after the encephalitis, seizures may begin much later in some people. For more information on seizures and epilepsy please read our factsheet Seizures and encephalitis.

Difficulties with movement, balance and coordination

Problems with mobility and balance can occur following encephalitis due to paralysis and weakness in limbs, dizziness and/or vestibular problems. Difficulties with movement can also be related to ‘apraxia’, which involves problems with translating ‘intention’ into effective ‘action’.  People may appear to be clumsy or unstable on their feet. Referral to a specialist (occupational therapist, physiotherapist, ear, nose and throat specialist, neurologist) may be necessary.

Problems with speech and swallowing

Difficulties with speech production may be caused by damage to the muscles involved in speech (dysarthria), difficulties saying what one wants to say (dyspraxia) or a combination of the two. As a consequence speech may appear to be unusual, including sounding ‘slurred’ or ‘slow’. It is also possible for the muscles involved in swallowing to be affected following brain injury (dysphagia). For some this is associated with an increased risk of choking. Referral to a speech and language therapist may be useful

Incontinence

Incontinence can happen following encephalitis for a variety of reasons, and can have a significant impact on social life. Referral to a continence service/specialist may be helpful.

Sensory problems

Sensory problems following encephalitis are many and varied and  include difficulties with perception of visual (colour, shape, size, depth, distance) and auditory information (sound), as well as smell (anosmia which is partial or total loss of smell), taste and touch (relating to pain, pressure and temperature). People may experience ‘pins and needles’, difficulty gauging ‘hot’ and ‘cold’. Depending on the type of the difficulty, your general practitioner/physician may refer you to a specialist.

Fifth Sense, a UK charity, provides support and advice to people affected by smell and taste-related disorders.

Hormonal imbalance

Mood swings, depression and impulsivity can sometimes be a symptom of hormonal imbalance rather than emotional and behavioural problems. This is because a brain injury may cause damage to structures in the brain that regulate hormones. There are many symptoms that might be experienced by a changes in hormone levels, and each is caused by a change in the particular hormone being produced by the pituitary gland. Some of the symptoms include: depression, sexual difficulties, headaches, fatigue, visual disturbance, weight gain, muscle weaknesses, reduced body hair, changes in skin texture, fatigue, mood swings, and difficulty regulating body temperature. An endocrinologist is the appropriate specialist to help you manage these difficulties.

By Alina Ellerington, Encephalitis International

Disclaimer: We try to ensure that the information is easy to understand, accurate and up-to-date as possible. If you would like more information on the source material and references the author used to write this document please contact the Encephalitis International. None of the authors of the above document has declared any conflict of interest, which may arise from being named as an author of this document.