Hi from Naperville, IL

Discussion in 'Introduce Yourself' started by JAJ, May 2, 2016.

tinnitus forum
    1. JAJ
      Pensive

      JAJ Member

      Tinnitus Since:
      07/2013
      Cause of Tinnitus:
      Unknown
      Hello everyone! I was so surprised to find this forum...especially right now, when I'm really needing some feedback. I'm pretty sure my tinnitus began around 2013. It crept into my life so gradually: First, an occasional high pitched sound in my right ear.

      Then after about 6 months, it shifted to intermittent episodes in both ears that sounded like the shrill scream of high tension wires. Intuitively, when the screaming would begin to "get in my way", I would put both hands over my ears, and begin to talk softy to them, asking them what they needed. Sounds crazy and so "New Age Woo Woo", but I have to say that the calming talk would somehow help me to get very calm, and the sound would wind down to a whisper, and finally go away.

      Then, for no apparent reason that I can figure out, my "sweet talkin'" simply didn't work anymore, and the episodes just came and went. Incidentally, during the years 2013 and 2014, I had a few isolated episodes of vertigo.

      Once I fell and hit my head, and sustained a concussion.

      Skip to July of 2015: I was at the movies, and suddenly I lost the hearing in my right ear; completely. It felt very "full" with a sensation of tremendous pressure inside, as well as pressing in from the outside.

      A few hours later, I had a terrible episode of vertigo, nausea and vomiting. The deafness persisted, as did the vertigo, nausea and vomiting, and I went to see an ENT.

      I was diagnosed with Meniere's Disease. I was prescribed a diuretic and began a no salt diet. After 4 weeks, about ⅔ of my hearing returned in my right ear, I was free of vertigo, and I began to experience tinnitus full time, in my right ear.

      The intensity waxed and waned throughout the day, but it remained "on", 24/7.

      My Meniere's relief lasted 6 weeks, and then it returned with a vengeance. Again, I lost all of my hearing, my episodes of vertigo increased in frequency and intensity, and I was hospitalized in December 2015, for an episode that simply wouldn't stop. During that episode I experienced hyperaccusis, and that lasted until one month ago.

      Since that December episode, my tinnitus as been the loudest it has ever been. In December I saw a new ENT and began intratympanic injections of Dexamethazone. It has been effective in reducing the frequency and intensity of the vertigo, but the hearing impairment and tinnitus has persisted. I am currently being fitted for a hearing aid.

      The hearing aid has anti-tinnitus programs built in, but the audiologist is still trying to find the right program for me. I've now been in for two 80 minute visits, and still haven't found the right one. Is it normal to take this long to find an effective program? They seem to create more pressure in my ear, and make it even more difficult to hear. This time around, I found one that's somewhat calming to listen to, but it doesn't make my tinnitus "disappear". It's almost as if I need the volume of the hearing aid turned up so that I can hear "around" the tinnitus (and the anti-tinnitus programs!).

      Does anyone have any experience with hearing aids that have anti-tinnitus programs built in? (Mine is the Starkey Muse). Did it take you a long time to find the right sound? Should the sound be as loud as my tinnitus?

      My audiologist doesn't seem to be able to answer my questions. He simply repeats the question "How much of YOUR sound can you now hear?" But I keep walking away with programs that don't seem to work. (I'm wondering if I should just drop the anti-tinnitus feature, and focus on the hearing aid.)

      At best, there's one sound, like soft ocean waves, that's calming to listen to, if all else is quiet. But while trying to watch TV, my own tinnitus drowns it out. At worst, the programs make it seem as through I'm listening to someone ELSE's tinnitus, along with my own!

      Any suggestions would be deeply appreciated!!! Sincerely, J
       
    2. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Welcome to Tinnitus Talk JAJ.
      I have just read your story and can relate to it as I have Menieres also.
      We have a Menieres thread for help and support.
      Look forward to reading your posts.
      ...lots of love glynis
       
    3. Cillian

      Cillian Member

      Tinnitus Since:
      04/16
      Cause of Tinnitus:
      Sinus infection
      Hi Glynis since you have Menieres does that mean your T comes and goes?
       
    4. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      Mine stays for good now and Hearing loss as I have had it a long time and past the first stage and second stage
      So I have sever bilateral tinnitus and hearing loss wich gets worse with attacks and balance problems too.....lots of love glynis
       
    5. glynis-harbron
      Feminine

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      Location:
      England, Stoke-on-Trent
      Tinnitus Since:
      2004
      Cause of Tinnitus:
      Meniere's Disease
      JAJ ,
      I have bumped the Menieres thread up to the top under support forum....lots of love glynis
       
    6. JAJ
      Pensive

      JAJ Member

      Tinnitus Since:
      07/2013
      Cause of Tinnitus:
      Unknown
      Thanks so much, Glynis! I didn't see that there was a Meniere's thread, as well! I'll check it out. Thanks again.
       

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