Discussion in 'Introduce Yourself' started by Dan-in-MD, Jun 26, 2016.

tinnitus forum
    1. Dan-in-MD

      Dan-in-MD Member

      Tinnitus Since:
      April 2016
      Cause of Tinnitus:
      I started experiencing Tinnitus in April of 2016, which, at the time, was something I never knew could happen to a person.

      In January I had smacked my head in a fall on the DC subway and suffered a mild concussion. I went to a neurologist the next month because I experienced concentration and short term memory issues (that I had never experienced before). I saw a neurologist who prescribed Nortriptyline, which may or may not have helped. The issues I experienced have pretty much gone away. I only bring this up as a possible factor, not likely.

      At the beginning of February, my mother in law died of cancer, which was expected but still very stressful on many levels--much more than I expected. A stress factor...

      In April, I visited a dying uncle at the end of Spring Break, also suffering from cancer. I am glad I made the trip. When I returned a few weeks later for his funeral, I flew there and back the same day, and on the return trip I experienced a lot of ear pressure. I forced myself to yawn, over and over, and when I did, my ears squeaked each time. I'd never experienced anything like that before. It was pretty painful.

      Shortly after I got back, I got a virus which produced bad sinus congestion and which may have led to a sinus infection. I got an antibiotic from a clinic and a week later a stronger antibiotic, Avelox (moxifloxacin) which has worked well for me in the past for sinus infections.

      Sometime after that point, I noticed the Tinnitus. It's mainly in my left ear, high pitch 11.5-12.5khz. Sometimes it pulses with my heartbeat.

      I must have had Tinnitus before 2016 because I could hear a high pitched tone in my head whenever I used foam ear plugs for studying. I never really gave it much thought. But now it's 24/7 continuous.

      There was no loud noise event that precipitated Tinnitus. I have always been pretty protective of my ears, including wearing foam earplugs during noisy events.

      I saw a local ENT who prescribed Flonase and nasal steroid spray which I've been taking ever since. It hasn't had any discernible impact.

      I saw a Hopkins ENT who said my ears looked good and ordered an MRI which said I had mild maxillary sinusitis, but no tumor or evident brain issue.

      I must say that these ENTs absolutely suck in treating the patient, especially for something like Tinnitus which can be so jarring. I'm in the car right now and I hear it loud as day in my left ear. When I'm physically active, walking, exercising, I can hear it pulse with my heartbeat. When that starts affecting a person, it's going to have an impact. I know I went through anxiety and stress, grieving the loss of silence, which I cherished. I keep thinking about my life before and after Tinnitus.

      I've had three hearing tests which showed my ear drums with a little negative pressure, lessening over time (since that flight). I have an unusual low frequency hearing loss, with minor high frequency loss. I can hear tones at a higher pitch than my tinnitus, however, and aside from my tinnitus, my hearing is pretty good.

      I've tried irrigating my sinuses with saline. Gently cleaning my ears with peroxide. I tried ginkgo, zinc, and I continue to take my regular vitamins.

      Went to a third ENT a couple weeks ago and started a course of prednisone up to 30mg for a couple weeks tapering down (focusing on possible eustachion tube inflammation), but my fourth ENT, which I went to yesterday said it probably was too little to be effective.

      The fourth ENT, though, had more experience with Tinnitus and prescribed me 60 Xanax tablets to help me relax in the evening. How hard is it to find a doctor to treat a patient experiencing this sort of thing? She, along with the first ENT, recommended the University of Maryland Tinnitus program in Baltimore.

      That's probably my next step. I believe they have multiple options, including Neuromonics, focusing on TRT habituation.

      Given my Tinnitus with an unusual low frequency hearing loss, my fourth ENT thought it possible that I may be able to get Hopkins to look into my situation more closely via their vestibular disorder program, but that is mainly focused on Meniere's Disease.

      I was having a really hard time when this Tinnitus started, and so many of you have expressed what I've gone through. I know my wife would do anything to help, and she's researching and trying, but there doesn't seem to be a strategy to identify a root cause (e.g. nerve issue) and focus treatments on it. There's no core doctor coordinating my care.

      I think at this point, I need to look at this as a neurological defect that I need to treat (if possible) and adjust to.

      It's *amazing* how little the medical community really knows about this condition and how few effective treatments there are. I suppose that's due to the multitude of potential root causes and how little we seem to know about the brain. Not only does it affect a significant portion of the general population, but it is a common issue affecting returning troops.

      Some other observations...

      I have had Invisalign since Aug 2015 and I do sometimes clench my teeth when wearing top and bottom retainers. It is always possible that there may be a TMJ root cause.

      If I press on my temples, grit my teeth, or open my mouth extra wide, my tinnitus volume goes up dramatically. I would say the volume doubles, if not more.

      I've found that if I press on my temples and open my jaw really wide, making the noise very loud, and hold it, when I release it has the effect of lessening my tinnitus for a little while.

      That's pretty much my story.
    2. Lorac

      Lorac Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Sudden profound hearing loss in left ear.
      Hi @Dan-in-MD and welcome to the forum!
      You have gone through the same ENT runaround that I went through and so many others here have gone through. I hope you find help at Univ of Maryland or Hopkins. The anxiety you are experiencing is very common with new T sufferers. Maybe one of those programs will offer therapy to help you with that part. Your tinnitus might be just a temporary issue but it is important to accept your current situation in order to habituate. Please try not to long for how things used to be, as that type of thinking just brings sadness.
      I am so glad that you have a caring and supportive wife to help you through this tough time. It's hard for other people to understand what we go through but she is trying to do that. How nice that you have her support.
    3. Dan-in-MD

      Dan-in-MD Member

      Tinnitus Since:
      April 2016
      Cause of Tinnitus:
      The engineer part of me wants to identify and resolve the root cause. Part of me wants to make this something I can live with. Part of me wants to forget it exists.

      Right now, the Xanax and some good movies are getting that last bit done.

      I'll share what I learn. It's a shame that this is such a little known condition.

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