Sudden Hearing Losses Multiple Times, Horrrible Waterfall Noise — Please Help!

Discussion in 'Support' started by Coyotesheaven, Sep 26, 2016.

    1. Coyotesheaven

      Coyotesheaven Member

      Tinnitus Since:
      Cause of Tinnitus:
      Acoustic Trauma/Vascular
      These last few days have been the absolute worst days for my ears that I can think of. I have burned through more hearing than I ever have before (most of it being low frequency), and am simultaneously being punished by a nauseating waterfall rumbling in my ears that I can practically feel throughout my body, and I have no means to explain why.

      While I have been experiencing smaller degrees of low frequency hearing hearing loss and roaring T for the past 3 weeks, it greatly intensified last week. I don't know if it was from sitting too long, but I developed low frequency hearing loss and waterfall T in both of my ears completely out of the blue while relaxing and watching TV last Monday.
      A few days later, I developed extremely tense muscles in my neck, throat, face, TMJ and shoulders, which came on suddenly and left me so stiff that every time I moved my hands or my arm my T would go blaring off and I would feel nauseated and headachy. I also had a migraine headache, tremors everywhere, and a racing heart with shallow breathing. Somehow, my hearing remained relatively preserved despite all the T trauma. This tightness attack seemed to be due from some interaction between topomax and my lyme and my period starting, but I wouldn't know for sure.
      On Friday I woke with my TMJ joints literally lodged into my ear canals, and extreme muscle tightness so terrible that my face was practically paralyzed on the left side. So I got out of bed, and while looking down a bit accidentally swallowed. Suddenly there was a violent explosion in the back of my neck as the muscles released dramatically, followed by the gushing waterfall, and a big loss of low frequency hearing. It was pretty scary. These events just kept happening throughout the day, nearly every time I swallowed and also whenever I coughed (very lightly) I would get the same violent response in my eustachian tubes or middle ears, especially if I was wearing earplugs. I can even feel *something* in my ear bulge out when this happens. I started to get a bit of vertigo at one point of the day and feelings of dissociation, as well as very shaky vision as if I were in an earthquake.
      I tried to shake these feelings off and went for a long walk across campus, up lots of stairs, and to the audiologist building hoping that exercise might help. I think it made everything far worse with all of the muscle pulling going on in my face, TMJ, and neck as I walked. And then my symptoms started happening whenever I sat down (the rumbling noise and the loss of hearing).
      I eventually made it to the audiologist, who notes 10 db loss in just 4 days (or Friday in particular) in one ear at 250 hz, also at the high end of the same ear (I had an audiogram performed the week before, so that is how we know).
      Below that sound level there must be a much more substantial loss. I can barely make out a helicopter flying in the distance anymore, which I heard just loud and clear a week ago. I can also barely hear or home's dryer, which in the house rumbles at around 40 decibels outside the room.

      To this day, sitting at my computer and typing is also causing the dreaded waterfall noise and more muffled hearing, even vertigo and nausea in some cases. It has also come continuously from swallowing with my earplugs in and being in any sitting position, and driving. I am feeling distraught, severely depressed, and have absolutely gained no answers from my neuro-otologist in California. Everyone is clueless as to the real cause of these losses.

      But here are some things that have happened over this time period, which may provide clues:

      -I started having a bit of low frequency hearing loss after exposure to aircraft infrasound and MRI noise in mid-August, but nothing for the rest of the month. No idea whether these were noise injuries or migraine reactions.
      -In early September I started 25 mg of topomax. I noticed minimal, occasional low frequency losses that week, and a host of neurological symptoms definitely being caused or exacerbated by the topomax. On the second week, I escalated to 50 mg, which is when waterfall noises began and the low hearing loss started picking up again. However, the losses seemed to be triggered by various things and did not occur on their own; wearing earplugs and talking/swallowing when doing so, moving my body too much to one side, straining, or sudden jerking movements of head/neck, or sleeping on one of my ears.
      -Last Saturday I cut my topomax down to 25 mg to taper, and had my last dose last Wednesday, the night before all of my muscles came up in a bunch. Since stopping the topomax, my muscle tightness has decreased dramatically, as has eye swelling and shortness of breath and other neurological symptoms while on the topomax. Sadly, the waterfalls and the low frequency dips have not gone away, but they are less severe than they were last Friday.
      -My period started on the Friday when my symptoms were the worst
      -High suspicion of chronic lyme at the moment.
      -History of orthostatic hypotension
      -History of otic migraines
      -History of middle ear muscle spasms

      So, my thoughts are that this is either a result of topmax ototoxicity or some complication of my lyme disease/migraines, but I really, really don't know.

      Can anyone think of ideas as to what is going on with my and why my hearing is taking a dive? I am desperate, and am having a very hard time untangling this heap of confounding variables and events. Not to mention thatthe ENT's and my doc. are not really listening to me.

      Any insight will greatly help at the moment or at least will ease my depression in knowing there is hope!

      Thank you so much!

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