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Living with orthostatic tremor

Orthostatic Tremor is a condition characterised by unintentional rhythmic muscle movements in one or more parts of the body. It typically occurs when a person is standing upright and is considered a progressive condition.

Living with Orthostatic Tremor

Orthostatic Tremor is a condition that involves unintentional rhythmic muscle movements of one or more parts of the body. It usually occurs when a person is standing upright and is considered a progressive condition.

Day-to-Day Living

On a day-to-day basis, people often feel stressed and frustrated, but they are not alone. Individuals with Orthostatic Tremor will frequently struggle with:

  • Standing
  • Walking
  • Other physical movements
  • Exhaustion
  • Pain

Variability

Orthostatic Tremor varies from person to person, and sufferers find their experiences change over time—sometimes due to stress or exertion, but other times without any apparent reason whatsoever.

Standing

For everyone who has Orthostatic Tremor, standing—even for just a few seconds—can be difficult. People may feel their legs buckle under them, which can result in actual falls. There may be a “freezing up” of the legs, making day-to-day activities such as queuing or browsing in shops difficult and often impossible. People find that the pain slightly diminishes when they sit or lie down.

Walking

In the early stages of orthostatic tremor, walking may not be significantly affected. People may find that they walk quickly but are unable to walk slowly. However, as the condition progresses, the walking distance tends to decrease. The actual distance that can be walked will vary, and at worst, some people may be unable to walk at all.

Exhaustion

People frequently suffer from extreme exhaustion or fatigue. Basic routines such as showering or dressing can take much longer than normal and require a period of rest for recovery. Even after a day of relatively little physical activity, they may feel unable to get out of a chair or may need to sleep.

Pain

Some people experience pain when moving, and some report pain even when resting, usually in the legs and back.

The Effect of Stress and Emotion

It is recognised that stress makes tremors worse. There is a vicious cycle where the tremor causes stress, and then the stress increases the tremor, and so on. Feelings such as anger, annoyance, concern, frustration, and even excitement or anticipation can be problematic. Particular difficulty arises in crowded places—where there is nowhere to sit, exertion is involved, and there is a risk of falling.

Frustration

People experience significant frustration and dependency on spouses, partners, or carers, often feeling a lack of confidence when separated from them. Simple household tasks such as cleaning, cooking, and even making a cup of tea (or carrying it to another room) can be either difficult or impossible.

Treatments

There are no known cures for Orthostatic Tremor, but many people are prescribed medications to ease the symptoms, the most common being Clonazepam. However, Pregabalin or Lyrica may also be used.

Mobility Aids

People often use wheelchairs, and some find a wheelchair essential for going out and/or moving around at home. Others use them only occasionally, such as at airports. Just over a third of respondents use scooters, while some people frequently use scooters or walking sticks.

  • Upcoming event

    Lunchtime Chat (Online)
    26th Nov 2024 12:00pm

    Join us for a festive chat on preparing for Christmas with neurological tremor. Grab a bite to eat, pull up a chair and join us for a lunchtime chat. Share tips and experiences.

    More info

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