Dizziness.  Giddiness. Vertigo.  Lightheadedness.  Wooziness.  Disequilibrium.  Unsteadiness.  Faintness.

Whatever word you choose to describe it, dizziness is defined as “having or involving a sensation of spinning around and losing one’s balance.”

It is also a symptom that I have lived with since early childhood.  The reasons for the dizziness is as a result of my neurological condition; a long-standing brain stem lesion.  Although we know the cause of the dizziness, we are unsure of the reason why the dizziness and vertigo occurs, and what it worse we have no way to treat or cure this very life-limiting symptom.  In the past I have tried various medications as well as undertaking vestibular rehabilitation exercises but unfortunately nothing has worked in even decreasing the severity of the moving sensations that I have to live with twenty-four seven every day.

Dizziness is not just an unpleasant symptom; it is also one which is life-limiting (Click to Tweet)

This condition and the symptoms, such as the dizziness has changed me.  It has also affected every part of my life.

Dizziness has not only changed me but it also affects every part of my life (Click to Tweet)

I cannot stand without feeling my body swaying due to the balance problems that the dizziness and vertigo causes; I find it difficult to be able to leave the house on my own due to the disorientation that dizziness and vertigo can cause.  Some days that I am so dizzy and the spinning is so extreme that I am unable to get out of bed.

Through this whole experience and after living with dizziness for so long, I have come to learn how little dizziness and vertigo is understood within the medical community.  According to some online resources, dizziness is one of the most difficult complaints to assess because it is a subjective sensation with many differing descriptions of the experience.  Furthermore, doctors are also unable to directly and objectively measure dizziness.  And mirroring my own experiences, patients complaining of dizziness and vertigo will see a number of different specialists, as dizziness and vertigo can be caused by a multitude of different pathophysiological processes, thereby making diagnosis particularly difficult.

As a result of it not being understood within the medical community, it is therefore also not understood within the wider community.  That is why awareness events are so important.  Now, there may not be an awareness week for my particular diagnosis, but the American organisation VEDA (Vestibular Disorders Association) is this week helping to raise awareness of Balance or Vestibular Disorders this week (September 15th – September 21st) of which dizziness and vertigo is a classic symptom.

The vestibular system includes the parts of the inner ear and brain that process the sensory information involved with controlling balance and eye movements. If disease or injury damages these processing areas, vestibular disorders can result. – VEDA website

Vestibular disorders can also include the following symptoms:

• Visual-spatial problems
• Clumsiness
• Fatigue
• Holding head in a tilted position
• Difficulty in concentrating
• Tendency to touch or hold onto something when standing
• Poor hand-eye coordination

See this informative infographic from VEDA to find out more about these disorders.

There may not be an awareness week for my neurological condition anytime soon but I am happy to support an awareness event to raise awareness of a symptom that greatly affects my life.  I may not live with a vestibular condition myself, but after living with dizziness and vertigo for so long, I can understand and empathise with those who do.  So, I will help VEDA and stand in solidarity with everyone affected by dizziness, vertigo and balance conditions and do so whilst wearing my ‘Dizzy not Drunk’ t-shirt!!