Many Frustrations, a Lot of Venting Here

Discussion in 'Introduce Yourself' started by AlexG, Nov 12, 2017.

    1. AlexG
      Alienated

      AlexG Member Benefactor

      Location:
      Philadelphia
      Tinnitus Since:
      Since the 90's, bad spike in 10/2017
      Cause of Tinnitus:
      Unknown
      I'm new here and just wanted to vent all my many frustrations. Warning, This is a very, very long story but if you decide to read it then you have my most sincere thanks.

      I've had tinnitus since I was little. Just noticed it one day as a kid while walking out the bathroom. It sounds like the hum of a television when you turn it on. Brought it up to a doctor at a children's hospital once and he just gave me a blank stare, so I thought it was something everyone had. It bothered me a lot when I slept but in the 26 years that I've had it I've more or less learned to live with it. At this point it only really bothers me/catches my attention when I lay down to sleep but I usually have the t.v. or tablet playing and it helps a lot.

      Well ever since last month I've developed a second sound or "layer" of tinnitus in my left ear. I guess the first time I've had ear problems was January of this year. At my grandparents’ house I felt like something fell/moved into my left ear and had the sensation for a couple of days. Eventually I guess it stopped because I forgot about it. Then last month (10/2017) I woke up to the same sensation of something "moving" into/in my left ear. I tried pouring some water into my ear and getting it out by tilting my head. After a few days the sensation started a little in my right ear as well. At that point I decided I should go see my primary care. Well, here's a summary of my recent events.

      1) Primary doctor looks into my ears. She says eardrums look normal but the canals were colored red. She told me it’s probably not swimmer’s ear because there was no swelling or any other symptoms, just that they were red. Not the first time I’ve been told my canals were red, pretty much every doctor that’s looked at them in the past few years said they were red but I never had any symptoms until now. She prescribes ear drops with acetic acid solution and refers me to an ENT. I put a couple drops into my ears for about a week. I’ve notice a slight burning sensation when I used it but nothing as bad as the warning labels mentioned.

      2) Next week I see the ENT for the first time. They do a hearing test and say my hearing’s perfect (though I felt like I messed up at some points). My primary reason was the weird sensation but I decided to bring up the tinnitus. He looks at my eardrums and says they’re normal. I ask him about my ear canals but he says there’s nothing wrong with them being red. So then he gives me eardrops called fluocinolone acetonide 0.01% solution (by the TARO company), and Lipo Flavonoid vitamins (says he doesn’t usually prescribe vitamins). I stopped using the acetic acid eardrops because I didn’t want to mix them. Specifically I would "trap" the new fluocinolone into my left ear by dripping it into my tilted ear and keeping it in there like water for a few minutes, twice a day.

      3) A few days after using the medicine I woke up one morning and heard a high pitch whistling noise. Thought it was coming from outside but after going to work I realized it was my ears. Also I’ve notice that regular sounds were more “intense.” Like the usual hum from the fridge sounded very high-pitched. When I showered the water falling against my chest made a high-pitch noise as well. Called the ENT office and the nurse tells me they prescribed steroid tablets and a nasal spray. Used them as prescribed and nothing changed.

      4) The new noise has been giving me a lot of trouble sleeping so I decide to go to an emergency room one night. They do a head CT to check for inflammation and look into my ears, once again commenting about the redness. They give me antibiotics and refer me to their ENT and psychiatrist. They tell me to keep using my medicine but I tell them I’m worried the medicine is causing the problem. After I bug them by asking if they are absolutely sure the medicine is not the cause they tell me to do whatever I want and leave. Took the whole antibiotics and nothing’s changed. Used the ENT medicine like 2 more times before stopping. Didn’t want to go to psychiatrist yet because I’m afraid they’ll write it off as me being crazy.

      5) I went to their ENT (was scared to go back to first). Brought my hearing test results from first visit. I tell him what happened and showed him all the medicine. Again he says my eardrums are fine and says it doesn’t matter if my eardrums are red (weird that the ENTs don’t see anything wrong with that but everyone else does). Then he tells me that all the medicine I’ve been prescribed is useless (the nasal spray was about to make my nose bleed according to him) and says I should just get used to it and refers me to a psychiatrist. Ooooooooooooh boy was I pissed to hear that. I adamantly asked why no other tests are being done other than staring at my eardrums and he says he refuses to test me further because there’s no indication for it. Says if I want testing I’ll have to ask my doctor. I go home and throw out all my medicine in anger.

      6) So I go back to my primary that same day very depressed-like and tell her my story. She orders me a head MRI with contrast and prescribes me amitriptyline for anxiety. I used the amitriptyline for 3 days but decided to stop it. I did a whole of reading into tinnitus and ototoxicity at this point and learned that it is ototoxic. Really scared me so I decided to try and deal with it.

      7) Had the MRI of my head, my primary calls me and says there’s was nothing seen in my brain or with the auditory nerve. There was an incidental finding of something on top of my partially visualized left tonsil. I have to go back for a neck MRI soon but I’m not sure that would have anything to do with my ear. Also I noticed my second tinnitus changed after the MRI. It went from a high pitch whistle to like a radio tuning in or something in my left ear. And I could hear it very clearly through louder noises like my earphones when I tried to mask it.

      8) About 2-3 days after that my tinnitus changed one again to like that high-pitch whine when a microphone is tuning in. It sorta gets quieter for a little than perks up again. I no longer heard the high-pitch noise from the fridge or shower. Both of my ears sting somewhat when I shut and open them with my hands. Very exhausting but I guess it’s good that it’s changing? At least that’s what I tell myself.

      So that about sums it up. I have the neck MRI to wait for and I’m going for an audiologist exam this week, though it’s at the same office as the get-used-to-it ENT some I’m nervous. I don’t have the sensation of something in my ear anymore but the new tinnitus is still alive and well and frustrating to the max. I’m very scared that the eardrops I used are the cause of this but then it wouldn’t make sense since apparently my eardrums are intact. But assuming the head MRI made no mistake then I’d have to guess something happened to my cochlea? Maybe the eardrops were absorbed through the eardrum? Perhaps it’s an unknown infection in my ear? It couldn't possibly be the vitamins right? I have no idea but I’m not ready to accept the “get used to it” answer. This might sound crazy, but I WISH I could go back to just having the first tinnitus. At least I was used to it.
       
      • Hug Hug x 1
    2. MikeB1996

      MikeB1996 Member

      Tinnitus Since:
      8/2017
      Cause of Tinnitus:
      Concert/rave
      Hey there, i read your whole story and i find it odd too.. You weren't exposed to any loud sounds? I got my T from a rave so i clearly know that's what caused it, but yours is odd.
       
    3. AUTHOR
      AUTHOR
      AlexG
      Alienated

      AlexG Member Benefactor

      Location:
      Philadelphia
      Tinnitus Since:
      Since the 90's, bad spike in 10/2017
      Cause of Tinnitus:
      Unknown
      I went to a concert once about 2 years ago. My older tinnitus got worse but only for that night. It went back to normal the next day. Maybe that's the cause? I just don't get why it would decide to show up 2 years later.
       
    4. AUTHOR
      AUTHOR
      AlexG
      Alienated

      AlexG Member Benefactor

      Location:
      Philadelphia
      Tinnitus Since:
      Since the 90's, bad spike in 10/2017
      Cause of Tinnitus:
      Unknown
      I listened to loud music for a few years but the older one only someitmes got worse. It would settle down after a few minutes.
       

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