Discussions By Condition: I cannot get a diagnosis.

Ear whooshing, hearing loss, pulse in head, narcoleptic - HELP

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: RodeoSam
  • October 3, 2008
  • 06:38 PM

I've heard my pulse whooshing in my ear for over 5 years. When it started, it was making my CRAZY... and there was bad nausea and vertigo. Hearing got very difficult, like sounds have a hard time getting past the WHOOSH WHOOSH. But body noises are very loud. If I'm talking or singing, it sounds really loud and distorted in that ear. Combing hair, I hear the comb scratching my head. Swallowing, I hear all the squish & squeaks, and blowing my nose is REALLY loud in that ear. The nausea and vertigo has decreased a lot over the past few years thank goodness.

The first ENT checked in my ear and up my nose etc. and did a hearing test with the plug thing stuck in the ear. He said there was nothing wrong with my hearing, nothing wrong in the ear. I was so frustrated and the constant noise was making me nuts... when he said that, I couldn't hold back the tears - I told him there WAS something wrong, I was dizzy and the noise was there all the time!! He said it was all in my head, and suggested I see a psychologist to help me learn to deal with my emotions. (I wanted to slap him).

The next ENT said it was happening because I had NO ear wax. Gave me ear drops, said don't get it wet for a month & wear a plug in that ear at night. Of course that didn't help either. (He was a week from retirement when I saw him... hmmm)

The next two ENT's and the two audiologists have all been quite thorough. They've done additional hearing tests that do show significant hearing loss in that ear for every day hearing - normal conversations on that side of my head are a lost cause - am getting pretty good at reading lips. Still nobody can find the problem.

It's constant - nothing makes it stop or get less loud. Lying down, standing up, pushing on veins or arteries, nothing helps. It's faster when exercising, slower when resting. I've tried eliminating sodium from the diet, eliminating alcohol, wearing a night guard (which does help the tmj but does nothing for the whooshing). At this point, I just live with it.... but it would be really nice if there was a way to make it stop.

PS - I also have narcolepsy which was diagnosed about 15 years ago and re-verified a few years ago again. I have been taking dexadrine for years, now dosage is lowest ever (5mg, 3X day). Docs don't think there's any correlation between this and the ear thing, but figured I'd toss it in here just in case.

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2 Replies:

  • I was recently diagnosed with narcholepsy. The issue with my ears has been occurring consistently for a couple months now. I've also experienced vertigo, etc. Mine is due to tiredness. It sounds and feels like pressure in the middle ear. I get it in the early morning, late night, days my meds don't work and every time I work out. It scared the ***l out me at first. When I switched to Provigil my ear sensitivity became painful/alarming. It's better with a new med. You might need to up your dose.
    Anonymous 1 Replies
    • October 5, 2014
    • 07:27 AM
    • 0
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  • I know EXACTLY where you are coming from. I was first diagnosed with meneries17 years ago. In the beginning the room spins amd nausea would last for hours, sometimes days. I have gotten better over the years but last week had a really bad one again. I have the whooshing in my ear all the time. Sometimes louder than others but always there. Grrr!! I was alsodiagnosed with idiopathic insommulance with the possibility of narcolepsy 14 years ago. My days are trying. Not sure what to do.
    Anonymous 1 Replies
    • November 3, 2014
    • 11:19 PM
    • 0
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