Extrapyramidal Symptoms

Overview

Extrapyramidal symptoms — usually called EPS — are a group of movement problems that can happen as a side effect of certain medicines. These medicines affect a brain chemical called dopamine, which helps control how your muscles move. When dopamine is blocked or changed, your body can make movements you did not plan, like stiffness, shaking, muscle spasms or a restless feeling, or it can become harder to move smoothly. The name 'extrapyramidal' comes from the parts of the brain that help control movement. EPS is not a disease on its own — it is a set of side effects, and it usually improves once the medicine is adjusted by your doctor.

They are fairly common. Among people taking medicines that block dopamine, roughly 3 to 4 in 10 develop some kind of movement side effect at some point. It depends on which medicine you take, the dose, how long you take it, and your own body.

Anyone of any age who takes one of these medicines can get EPS, including children. The risk is higher in older adults, in women (especially for long-lasting face and mouth movements), in people taking higher doses or combinations of these medicines, and in people who have taken them for a long time.

Symptoms

Common symptoms

• Shaking or trembling, usually of the hands, that happens when the hands are resting
• Stiff, rigid muscles, or arms and legs that feel heavy or hard to move
• Slower movements than usual, a shuffling walk, or trouble starting to walk
• A face that looks stiff or 'mask-like', less blinking, or drooling
• Sudden muscle spasms or cramps, often in the neck, jaw, back or eyes
• The neck twisting or pulling to one side, or the eyes rolling upward and getting stuck
• A strong restless feeling — being unable to sit still, pacing, or rocking from foot to foot
• Unusual movements of the tongue, lips, jaw or face, such as lip smacking, chewing movements, or the tongue pushing out

Symptoms in children

• Muscle spasms of the neck, jaw or eyes can be more common in children and can look frightening
• A child may become very restless, irritable or unable to stay in one place
• Trouble swallowing, slurred speech, or refusing to eat
• Neck twisting, back arching, or an unusual way of walking
• Movements can be mistaken for behaviour problems or 'fidgeting' — it is worth mentioning any new medicine to your doctor

Symptoms in older adults

• Older adults are more sensitive to these medicines, so side effects can appear at lower doses
• Stiffness and slow movement can affect balance and increase the risk of falls
• Symptoms are sometimes mistaken for Parkinson's disease or simply 'getting older'
• Long-lasting face and mouth movements are more common with long-term use, particularly in older women
• Confusion or new difficulty with daily tasks can be an early sign

Causes

Main causes

• Medicines that block dopamine in the brain, most often ones prescribed for mental health conditions such as psychosis or bipolar disorder
• Some anti-sickness medicines, and some medicines used for stomach or digestive problems
• Taking two or more dopamine-blocking medicines at the same time
• Higher doses, or long periods of treatment
• Occasionally, movement problems that start or worsen after a medicine is stopped or the dose is changed suddenly
• Some brain conditions (such as Parkinson's disease or certain types of dementia) can cause similar movement problems — your doctor will check for these

Risk factors

• Higher doses and longer treatment
• Being an older adult
• Being female, particularly for long-lasting face and mouth movements
• Having had EPS before with an earlier medicine
• Dementia, Parkinson's disease or other brain conditions
• Dehydration, or liver or kidney problems
• Taking several medicines that affect dopamine, including some anti-sickness medicines
• Alcohol withdrawal or heavy alcohol use

When to see a doctor

See a doctor urgently if:

• Any new muscle spasm, twisting of the neck or eyes, or trouble swallowing
• A restless feeling that makes it impossible to sit still or sleep
• New unusual movements of the tongue, mouth or face
• A fall, or walking that has suddenly become unsafe
• Fever with muscle stiffness or confusion — call your local emergency number straight away

Book a routine appointment if:

• Mild shaking, stiffness or slowness that has come on since starting or changing a medicine
• A family member or friend has noticed a change in your movements or facial expressions
• You are finding it harder to write, button clothes, eat or walk
• You have questions or worries about your medicine — book a medication review
• You are thinking about stopping your medicine because of side effects

Diagnosis

There is no single test for EPS. Your doctor will make the diagnosis by talking with you, examining how you move, and looking closely at your medicines and the timing of your symptoms. Often the clue is that the movements started or got worse after a medicine was started or the dose changed. Your doctor may ask a family member what they have noticed, because other people often spot these movements first.

Tests that may be done

• A review of all your medicines, including ones you buy over the counter and any supplements
• A physical and neurological examination: watching you walk, hold your hands out, write, and open and close your mouth
• Blood tests to rule out other causes, such as thyroid, calcium, liver or kidney problems
• A brain scan in some cases, if the cause is not clear
• A carefully monitored change to your medicine, arranged by your doctor, to see whether symptoms improve
• Referral to a specialist (such as a neurologist or a mental health team) for certain types of EPS

What to expect at your appointment

The appointment is usually a conversation plus a short movement examination, so it may take 20 to 30 minutes. Your doctor may ask when the movements started, whether they are better or worse at certain times of day, and how they affect your daily life. Bringing a list of your medicines, and a short video of the movements if you can, is very helpful. Nothing about the examination is painful.

Treatment

The main treatment is to deal with the medicine that caused the problem. Your doctor may lower the dose, switch to a different medicine, or stop it — but only if that is safe for the condition being treated. Some types of EPS also improve with other medicines that help rebalance brain chemicals. Because these side effects are linked to medicines you may need for your mental or physical health, treatment is always planned so you keep the benefit of your original treatment.

Self-care at home

• Do not change or stop your medicine yourself — talk to your doctor or pharmacist first
• Keep a simple diary of when symptoms happen, what you were doing, and how bad they were
• Ask someone close to you to note any changes in your face, walking or movements
• Stay well hydrated and eat regularly
• Cut back on caffeine and energy drinks, which can make restlessness worse
• Be careful with alcohol, and avoid street drugs — they can interact with your medicine
• Take your medicine exactly as prescribed, at the same times each day
• Tell every doctor, nurse, dentist and pharmacist about all the medicines you take

Medical treatments

Your doctor will first review the medicine that caused the symptoms and consider lowering the dose, switching to a different one, or stopping it if that is safe for you. They may also prescribe other medicines that help balance the brain chemicals involved and calm the movement symptoms; some are taken by mouth, and in urgent situations some are given as an injection. Muscle spasms and the restless feeling often settle within hours to days once treatment is adjusted. Long-lasting face and mouth movements can be harder to treat and may need a specialist. Some people need their mental health team and a movement disorder specialist to work together, and psychological support or physiotherapy can also help.

When is surgery considered?

Surgery is not used to treat extrapyramidal symptoms. Treatment is based on adjusting medicines and, where helpful, physiotherapy, speech therapy or specialist review.

Living with this condition

Many people carry on with normal life once the right medicine balance is found. In the meantime, plan tasks that need steady hands for when symptoms are mildest, use aids like easy-grip utensils or a writing aid if it helps, and tell people around you what is happening so they do not misread your movements. Keep regular check-ups so any change is spotted early, and ask for a medication review at least once a year if you are on long-term treatment.

Lifestyle tips

• Gentle daily movement — walking, stretching, tai chi or yoga — helps stiffness and balance
• Keep a regular sleep routine; tiredness can make symptoms feel worse
• Build in rest breaks during the day, especially if you feel restless
• Stay socially connected — it is easy to withdraw when you feel self-conscious
• Ask your doctor whether your movements affect your driving safely
• See your dentist regularly if you have mouth or tongue movements, as these can affect teeth and gums

Diet and exercise

Eat balanced meals at regular times and drink enough water, since constipation is a common side effect of many of these medicines; fibre-rich foods like fruit, vegetables and whole grains help. If swallowing or chewing is difficult, softer foods and smaller, more frequent meals are easier, and a speech and language therapist can give practical advice. For exercise, aim for gentle activity most days plus simple strength and balance work — a physiotherapist can design a programme for you. Avoid very strenuous exercise in hot weather if you are prone to stiffness or overheating.

Mental health and emotional wellbeing

Movement side effects can be genuinely distressing. Many people feel embarrassed, anxious, or frustrated, and some feel so upset that they want to stop their medicine altogether. Those feelings are understandable and very common — please tell your care team rather than coping alone, because there is usually something that can be adjusted. If you ever have thoughts of harming yourself, contact your local emergency number or a crisis support line straight away, or reach out to someone you trust and ask them to stay with you.

Prevention

Not entirely — some people will get EPS even with careful prescribing. But a lot can be done to lower the risk: using the lowest dose that works, reviewing medicines regularly, avoiding unnecessary long-term use, avoiding combining several dopamine-blocking medicines, and picking up early signs quickly so the medicine can be adjusted before symptoms become troublesome.

Screening programmes

There is no screening test for EPS. Instead, if you take one of these medicines, regular check-ups where your doctor watches how you walk and move, and looks at your face, tongue and hands, help catch problems early. Ask for a medication review if you have been on treatment for a long time.

Complications

If left untreated

• Movements may become more frequent or more noticeable over time
• Some face and mouth movements that follow long-term use can become long-lasting or permanent
• Stiffness and slow movement increase the risk of falls and injuries
• Trouble swallowing or chewing can lead to poor eating, weight loss and dental problems
• Distress and embarrassment can lead people to stop their medicine suddenly, which may cause their original condition to return
• Rarely, a severe reaction with fever, very stiff muscles and confusion can occur — this is a medical emergency

Long-term outlook

The outlook is good for most people. Muscle spasms, the restless feeling and shaking usually improve within days once the medicine is adjusted, and many people have no lasting problems. Long-lasting face and mouth movements are less predictable, but early recognition and specialist support make a real difference, and many people find their symptoms stay stable or improve. With regular review and a team you trust, most people find a treatment balance that works for them.

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