Headache with Severe Hyperacusis - 7 years duration

[LucyLane]

I have had severe headaches off and on for 7 years, the current one for 47 days.  I came down with a bad virus after traveling and 1 week later had such a severe headache that my Dr. thought I had a brain tumor or an aneurysm, since my right eye was completely closed and the right side of my face was in constant spasm.  The MRI/MRA came out clean, so he put me on prednisone for 5 days.  By day 6, I was headache-free, but suddenly I started to see double with my right eye and it seemed as though someone had turned up the volume on the world noises 50 times.  I have been to many neurologists and have had 3 audiograms that show me able to hear in the minus-decibel levels.  This rare condition is called severe hyperacusis.  I have tried everything, including wearing custom earplugs that block 25 decibels of sound, with Bose noise-canceling or firing range headphones over those and can still hear someone whispering 6 feet behind me.  I can hear the ocean, which is 3 miles from our house.  I cannot work, go to restaurants or movies, etc.  My wonderful, amazing, loving, patient husband even gave up his job in California to move us to a quieter place in Florida.  Unfortunately, we live a block from the Intracoastal Waterway and an FAA training center, so I can hear constant noise from the boats and planes.  Some days, I can't even stand my husband turning the pages of a book or whispering.  I have been on every medication known to mankind for the headaches, but NO ONE knows how to help and have, quite literally, given up on me or dismissed me as a hypochondriac.  I have had to give up any and all social activities and am very, very depressed, as I want my husband to be able to have a life without a chronically ill wife for which there doesn't seem to be any cure.  This is a very isolating, lonely condition and have had people scream at me when I have asked to have the music turned down in a gym after trying to explain it nicely to them, "Why don't you just have your f----ing eardrums ripped out?"  That is one of the milder ones.  This hyperacusis with headache is an invisible condition, for which there seems to be no answer.  Has anyone EVER heard of someone with both conditions?  I have been to Mayo Clinic in Jacksonville, Baltimore Headache Insitute, UCSF and Diamond Headache Clinic.  All they do is give me massive drugs for the headaches and send me on my way.  Migraines, cluster, tension, hemicrania continua, etc. have all been ineffective diagnoses.  Any help at all would be greatly appreciated.  I am at the end of my rope, with nowhere to turn.  I have a prescription from Diamond Headache Clinic for an MRI/MRA of the brain with contrast and IV sedation (due to my sound intolerance) but my primary care refuses to do the required EKG, heart & lung and Chem 7 blood tests.  She said, "If you can walk and talk, there can't be anything wrong with you.  You just have a type of headache you'll have to live with."  Nice bedside manner, huh?  I'm currently in bed with a severe headache, nausea, dizziness, blurry vision and pain in my right ear.  Help!!!  Thanks so much.      


This discussion is related to Depakote and headaches.