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kemyersvance

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Reply with quote  #1 

Since Jane is moving and does not have the time to prepare for our network PR release I will do as much as I can to get our stories to the media.  I have some down time waiting for the AVN core decompression surgery on my left leg.

 

I need stories from people that are suffering from each category that the network represents.  I have been told not to get emotional about the issue, just state the facts.

 

You can email them to me at gwvkem05@netzero.com

 

I will keep everything confidential.

 

Karen 

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Maree

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I'll post my story here, hope you don't mind.

In January 2006, I travelled to Wellington, New Zealand for work.  I'd had background sinus infections, I'd struggled to clear for a few months.  Following the flight I had a mild headache that grew and grew.  My hotel room had a strong buzzing sound from an airconditioning duct, the first night I didn't sleep well.  The second night, the combination of the sinus pain and the noise was unbearable and I had to ask to be moved in the middle of the night.  The next day I had my first doctors visit and was given injections to reduce the pain level.

The following night the pain became so severe I had to call an ambulance.  By this stage the nature of the pain had changed, I had extremely severe facial pain radiating out of the right ear, following the nerve pathway.  Current theory is that I suffered from an Acoustic Shock Injury due to the combination of the sinusitis and the noise.

It took a fortnight until I was well enough to fly home to Australia.  Once I got home there followed visits to a range of specialist - ENT, Neurologist, Pain Management, TMJ and 4 more stays in hospital of several days in duration each time.

Pain and noise sensitivity were so severe that when not in hospital I could not leave my home.  I was only able to spend ~20 min a day with my children as the noise of there voices was unbearable.  Noise, wind and cold resulted in bursts of pain like a jack hammer inserted into the ear, smashing away at the bone and flesh.

It wasn't until May that my doctors found a combination of pain killers that I could take at home that mean't I could sleep and wasn't in constant agony.
Drug combination was: Gabapentin (at very high dosages) plus Tegretol, Tramadol, Oxycodone & Meloxicam.
These drugs gave me two hour windows were I could drive and get out.
My whole life revolved around my 4 hourly Gabapentin doses.

In September my anticonvulsent drug were changed to Lyrica. Lyrica has a much longer effective period and I am able to live a more normal life.  It appears to break the link between sound and neuropathic pain.  Although my brain is still scared of noise and still pumps way to many sounds to my conscious brain at ridiculously amplified levels.
Given the sound pain link is controlled by the medication, I am now in a position to try to desensitise my mind to sound.  I am currently working with an Audiologist using environmental sound to do this.

My neurologist believes that I will probably need to take anti-convulsents for the rest of my life to control the neuropathic pain.  However I hope to increase the range of things I am capable of.





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janepm

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Hi Karen: thanks for taking a great lead on this!

Let me know if you ever have questions.

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Jane
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kemyersvance

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Maree,

 

Thank you so much for your story.  I have had only one other reply and have been in tears reading both of your stories. I am unsure if we get any exposure through the media in the USA that it will help in your country.  I don't know if the American media is dominate in Australia.  I will let them know of this crisis throughout the world.  Maybe there are related stations we can address to have access in your country.  Could you please let me know if a connection is available?  

 

Was your diagnosis hyperacusis only or did it include any of the other categories the Hyperacusis Network supports?

 

I have been using gabapentin for over 5 years for bipolar disorder.  My doctor did increased the dosage after my onset of hyperacusis to a much higher level.  My analyst just told me about Tramadol as a pain medication.  I was on vicodin forever and had to quit due to addiction problems.  He stated is was non addictive.  I have an appointment with my primary doctor next week and am going to ask her to add this medication.

 

I have been politically active in the past in Colorado for education.  I am a rookie at this but will try my best to do the right this for our network family.  My take on this is Noah was an armature building the ark and engineers built the Titanic.

 

Please let me know how you are doing.

 

Karen

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