Navigating the labyrinthitis journey, from a patient's perspective

Spreading awareness:

We are both now recovered, but we decided to carry on the website all these years later, in a bid to continue to spread awareness of inner ear conditions.

Welcome to Labyrinthitis.org.uk!

The fact that you have arrived at this site implies either you or someone you know has had or still has the inner ear infection Labyrinthitis. The norm for Labyrinthitis is to last between 3-8 weeks and then disappear without so much of a trace. For a fair number however this does not happen and long after the doctor has said "You'll be fine in a few weeks" such people have noticed no improvement, let alone a recovery.

This website is for those people who have been suffering for months and years, rather than weeks.

The website will explain this syndrome of "Uncompensated Labyrinthitis" whereby the brain or CNS has not yet compensated for the inner ear injury and will offer practical advice on symptoms, testing, managing symptoms and other useful resources.

Who are we?

We are two sufferers who were inspired to form this site back in 2005 when we were both suffering, in an attempt to inform and help others out there who are going through the same experience. Our aim is to make the difficult, emotional and pretty devastating "Labyrinthitis journey" which we have experienced, that little bit easier.

As we realised, vestibular disorders are so often misunderstood by the general public as well as health professionals and we feel the need to raise this understanding and awareness of such a disabling condition. If we are able to inform and support a handful of people, then in our eyes this website is a job well done.

We have both now recovered (with an element of the balance disorder evident at times) but we decided to carry on the website all these years later, in a bid to continue to spread awareness of inner ear conditions. The website was updated in 2024.

Emma runs a support group in Newcastle, called 'NE1 Dizzy?' at www.ne1dizzy.org.uk. If you are in the North East of England, please look us up!

Emma & Isla.

NB: Please note we are not health professionals so our information is explained in our own way. As part of our mental journey in dealing with this disorder, we both read a lot on the subject but we are not "experts". The site is more of a "patient's perspective".