Superior Semicircular Canal Dehiscence
Syndrome (SSCDS).
For a technical but "made for us"
paper to read on this, go
here
or
here.
You can also watch a couple YouTube video's...
Inside Todd's Head; made
by someone with this problem.
The Musician who heard too
much; an ABC 20/20 special, This is made by people who don't have a
clue about someone who has the problem. I.E. Sound effects suck but it
does give the basic idea of what this syndrome is.
Below is a list
of links with more information related to SSCDS and related to the ear and how
it works... You should come out of it with a good basic understanding of
everything after reading all this material.
This is not a bloody, gory, deadly, syndrome but it is devastatingly
frustrating to have! This is also very rare, "a Temporal bone Histopathological
study suggests 1-2% of the population have a thin bone over the semicircular
canal" and fewer yet have a hole (dehiscence) in that bone.
Here is my attempt at helping to cope with it's devastating effects by
finding a way to eliminate or hamper one aspect of this
syndrome.
SCDS is an inner ear problem where the bone between
the Superior Semicircular Canal and the brain is missing or has
a dehiscence (hole) in it. The Semicircular Canals contains the
organs that tell the brain what way is up, what way the head is
accelerating/tilting/turning and to mess with this can be
devastating. As of this moment I have no problem with telling what
direction my head is accelerating but might in the future. The
devastating part to me are the actions acting on the brain in the form of
vibrations centered on one spot, right there at the hole. There are many
other symptoms that go with SCDS but the ones which I have
are;
*Autophony, meaning Self Noise. I hear my own
voice very loudly and distorted in the effected ear and the louder I
attempt to be the louder and more distorted my voice becomes in
that ear. So I speak softly.
*The skull vibrates with my
voice, and again, the louder I attempt to be the more intense the vibration
is and another reason why I speak so softly.
*I can "hear" my heart
beat. I can also tell with this effect when my blood pressure is high or
low and can come close to an accurate measurement of the pressure by how hard
the beating is at any moment of time. This has been described to me as
"hearing" the pulse pressure differences in the brain casing being
transmitted through the hole. With this ~new pressure wave~ the oval window
is moved and therefore the Stapes, Incus, and Malius move and these push on the
ear drum. All these movements make me "feel" the heart beat as
well.
*The eye ball on the effected side jumps uncontrollably with
my voice but only when I try to raise my voice. And, It vibrates with loud
external noises such as a book slamming against a table. So, again, why I
speak softly but also why I shy away from loud places.
*The eye ball as
it moves normally from side to side and up and down is also audible in the
effected ear. This is not an issue except when I'm in a quiet
environment. Even then it's not frustrating.
*The eye ball moves
with the beating of my heart. The higher the blood pressure, the more
aggressive the movement. By moving my head in an attempt to
distinguish it's movements I found that rotating my head (left ear down and
right ear up) I can counteract the visual movement. This rotation,
after reading the above material, suggests the Superior Canal is the one being
activated by the pulse pressure difference pressure wave. Coupling
this with the hearing of the beating and I can tell with great accuracy what my
blood pressure is.
*During the winter of 2010-11 I started experiencing a
strange sensation where my eye ball movements (while reading or just looking
around) made me feel like I'm moving. It's rare and only lasts maybe a
full two seconds but when it happens it's a strange sensation.
*I'll
normally find a parking spot relatively far from the front door of the store
just so that I can have a brisk walk and therefor exorcise. The other day
(03-01-11) I went from half way out in the parking lot, in through the WallMart doors and on to the pharmacy inside. While waiting in
line my heart was pounding in my ear; B-Boom, B-Boom, B-Boom... With each beat I felt like I was
spinning. Kind of fun! but I'm glad my heart relaxed before I made it to
the counter, It would have been dificult explaining why I'm repeting over and
over W-Wee, W-Wee, W-Wee, W-Wee.. :-)
*Eating anything crunchy such as
cereal, potato chips, hard candy, even just grinding teeth is murder!
*I
can hear my neck joints creaking. Sounds like a pot of boiling
water with some crackles and pops mixed in.
*Bone Conduction of
Sound; If I tap on any bone anywhere I can hear the tapping "exiting" my
ear. The further away from the ear the softer the tapping. However,
even tapping my big toe I can distinctly hear the tapping. One test from
the otoneurologyst is to place a tuning fork on the skull then move to other
bones further away. When he did this it was a very strange sensation
having this tone coming out of my ear instead of going in.
*I can hear
each drop of water as it hits my head and neck while taking a shower. This
is conduction through both Bone and Soft tissue. I still have yet to find
out how/why the soft tissue transmittance occurs. I am currently searching
for this information....
*That brings me to walking. Some with this
syndrome can hear their foot falls, I don't hear them directly but I do hear
fluid moving in my ear with every movement of my head, Turning, twisting,
tilting which walking does move the head up, down, and forward.
*My
left ear feels full all the time. It feels exactly like when you drive up
or down a hill and have to swallow to clear the ears out. The only
difference is that as much as I might try I can't clear it
out.
*Some times, which I'm told could be during moments of low
atmospheric pressure (low pressure zones on weather maps), These conditions all
become worse, especially the "full" feeling in
the ear.
*Besides the Autophony, the second most annoying thing is
forgetfulness... I don't yet fully understand how this works but in
essence with all the corrections needed to help keep you balanced with the
noises and eye movements the brain gets overwhelmed and the first thing to go is
the memory. I can easily loose the last few seconds of memory
with a single loud thump and this plays havoc when I'm trying to complete a task
and can't remember if I have even started it yet. And worse, there is no
relaxing and having the memory come back since it never gets saved in the first
place.
*Part of the Forgetfulness frustrations is talking to someone I'll
inadvertently omit essential information and it's usually too late when I
realize I had done so or I get people confused as I try to correct my self and
then run out of steam because of all the talking and skull
vibration.
*Recollection of names! I don't fully understand
this either, however it was explained to me this way... The hole in the ear is
right against the part of the brain that stores names of people. Even
though i know your name and am quite familiar with you, when I need to
recall your name I will see it in my mind but will struggle to bring it out
verbally.
*Reading gets me very tired and forgetful. I can only
assume, and it sounds feasible, that as the eye is moved left to right, the
signals are being sent in reverse to the semicircular canal and into my brain
and then the brain tries to keep me balanced and ends up overworking
and....ect.
* I've been listening to a group of people who have the same
problem, These are 99% women and when they talk about Diet changing things I
have to discount that as airheadedness as there is no way diet can change
things. Turns out they are right, eating anything salty plugs up my ear
and if I eat a lot of this salty food I have to sit down for a couple hours or
more. Surprising how sensitive the ears are to what you eat!
