So what is Superior semi circular canal dehiscence?

Any google search will give you details of this condition. However, I will summarise what I have discovered in my many hours of trying to work out what was wrong with me prior to official diagnosis. 

SSCD has only been around officially since 1998, when it was described by Lloyd B Minor.  Who noticed that patients were experiencing a bizarre collection of symptoms, which were sound or pressure induced.  He discovered that a small hole in the bone that lies between the base of the brain and the inner ear was enough to create the vertigo and other symptoms.  Rather than there being the usual two entrances/exit to the inner ear (oval window and round window) where sound would enter and exit the inner ear.  This extra hole added another source of sound and pressure to the vestibular system.  The source of all this was through the sounds and pressures of the body itself, and external noises and pressures too.

 

 

The thinking is, that as the bones in the head develop, not enough bone is put down at the location of the tegmen (between ear and brain cavity).  This is not usually a problem in early life, as there is sufficient bone to prevent symptoms, but as the body ages, and through wear and tear, the bone is reduced, to the point that interference of the vestibular system occurs.  Symptoms can arise through the bone being simply too thin, or through an actual hole (dehiscence).  So the average age of occurrence is in a  persons 40's.  Although some people do obviously get it earlier or later than this, and some people get it through head trauma. 

With it being such a "new" condition, it is not really known what the incidence of this is.  At autopsy they reckon about 1-2% of the population could have a dehiscence, but diagnosis has been very tricky for some, with them often being misdiagnosed for many, many years.

Now, I am new to all this, and as a non-medical person I am trying to make sense of it all. But the basics of it are that they vestibular system is a finely tuned system, reliant on sight, the awareness of where your body is in space (proprioception) and the feedback from the inner ear.  When something is not right with any of these, it can affect the vestibular system.  One of the side effects of one part of the system not working, is that you rely far more heavily on the other parts.  For me, this means that walking in the dark can be more difficult as I don't have the feedback from my eyes. And standing on uneven ground can also be problematic as the proprioception feedback is unusual. 

For people with SSCD, the symptoms are varied and bizarre.  I will highlight my own symptoms first, and then look at those that other people also suffer with.  I plan to elaborate on all  these in a later post.

Hearing internal noises (autophony) - this, for me, includes hearing my eyes moving, hearing my heart beat, hearing my neck joints moving, even when I don't think I am moving my neck, just the slightest movement can be deafening.  Hearing my footsteps when I am walking, and hearing my voice as particularly loud.   
Hyperacuasis (sensitivity to external sounds)

Tullio phenomenon - noises creating a sense of imbalance. 

A feeling of fullness in your ear, as if your ears are blocked.

Vision jumping up and down in time to your heart beat, which gives the illusion of things moving.  When this is particularly severe it is incredibly disorientating.

Feeling unsteady.  This is like being on a boat, or how you feel after a little too much alcohol.  But then I can have episodes where I am fighting against an unknown force to stay upright.

Bass noises making me feel unsteady and vibrating my vision. 

Slight nausea

Tinnitus - ringing in the ear

Headaches

These symptoms vary from day to day, some days are far worse than others.  On a bad day, the best thing I can do is go to bed and try to sleep.  Yet on a good day I feel nearly normal, if a little unsteady and hearing a few odd things in my head when it is quiet. 

Other symptoms that people can experience are

Nystagmus - Involuntary eye movements

Brain fog

Exhaustion