Hyperacusis: It's Importance to Stay Positive

August 5, 2015

I know what they are saying and I understand they say there is no cure. However, I have come to learn a few things about this disorder of which they have never had, yet special in. Therefore, who is the specialist really, them or "me". I believe one can be "cured" and I aim to prove it!

"A doctor is a person who learns about something and practices it.  Many have never experienced it themselves. To me, the doctor is only the person who watched the Right Brother's accomplish the impossible." wspickerman

I have had many a journey to my doctors. They ran test after test, all that have come back negative. 

• Blood work
• Cat scan
• Balance test
• Numerous hearing test

They are no closer to finding anything that could have caused my disorder other than the surgery.  The belief is a simply surgery like the one I had could not have caused it. It is unheard of though it is safe to say many things were unheard of in the world until discovered. 

As many as seven doctors have worked with me trying to uncover what caused my tinnitus, hyperacusis directional issues and hearing issues dealing with multiple sounds and cross conversations. It is most liking a simple upper respiratory infection of which I was never hospitalized for is the cause. 

However, that does not seem likely either. I was not that sick just lost my voice and the infection went into both ears. At the time all of this was happening, I was working. Twice, I had to leave work and ended up at the ER. 

Symptoms:

• Dizziness
• Lightheaded
• Severe hearing loss
• Migraine
• Unbearable pressure in my head

I just could not work anymore, I was dizzy, lightheaded complaining of severe hearing loss, migraine and unbearable pressure in my head along with severe sound sensitivity to my own voice, breathing, walking even my heartbeat.

While some of these are common symptoms when dealing with the ears, maybe someone should have looked more closely. Yet the ER believed everything was okay. I was told to see a specialist for my condition. 

Upon seeing the ENT Specialist, a rushed surgery was decided. It was important to relieve that pressure in my head. It looks like the surgery just did not happen soon enough.

Since then, I have been seeing a specialist who deals with tinnitus and hyperacusis. Tinnitus causes ringing in the ears and the hyperacusis pain from everyday sounds. I have had tinnitus Since April 15 2013. Soon after the surgery, I was diagnosed with severe hyperacusis, directional issues and hearing issues.

There is no known treatment for my directional issues. To simplify the issue:

"It is not the sound getting into my ear that is the issue. The issue is how my brain is interpreting the sounds now." stated the Tinnitus and Hyperacusis Specialist.

The neurologist working with me is trying to help relieve the severe vertigo I get from the hyperacusis. The vertigo is unpredictable as it is set off by sounds then affects me. 

Vertigo Symptoms:

• nausea
• dizziness
• spinning sensation or feeling of a room flipped
• sudden sinus pressure
• seeing of spots a feeling like I'm going to black out

Depending on the sound and the trauma it causes there can be instances of sudden onset of deafness. The specialist called it "acoustic trauma".

Plan of Action

• Continue to work with the neurologist to see if we can get the vertigo under control
• The decision was made to take a closer look at blood-work just to make sure there is no underlying problem that may be affecting my ears.
• TRT, tinnitus-retraining therapy slowly conditioning my ears to everyday sounds again. However, this will have no effect on my directional issues.
• Learning to cope with my disability
• Surgery, another surgery is needed to remove fluid in the ear. While this fluid is acting as a buffer and actually helping with the hyperacusis and vertigo this is causing hearing loss on a higher level.

I have been informed removing the fluid should increase my hearing again however, everything will be further amplified which means the hyperacusis and vertigo will get worse. Something I will have to be prepared for when the surgery is over.

While there may always be some sounds I will not be able to sustain, being around the objective is to recondition my body to as many as possible. However, cross conversation and multiply sounds is a big issue with my condition.

I can say my body is learning to cope due to having a strict routine in place. I have gone from wearing earplugs and earmuffs to just mainly earplug use now. That is not to say I will never need my earmuffs, as there are just some sounds I will not ever be able to handle. However, I am slowly taking back my life.

I believe if I stay with this strict routine and the doctors continue to help me, I can recover with minimal damage in the end. There was a time I could not tell the sound of a plane from a lawnmower one block away from me. That has changed, with it, hope still exists, and my determination to take back my life has not been extinguished.