Hi, I Am Wondering If Anyone Experiences "Oscillopsia" — Eyes with Tinnitus?

Discussion in 'Introduce Yourself' started by jennie mae, Aug 26, 2014.

    1. jennie mae

      jennie mae Member

      Tinnitus Since:
      My name is Jen and I first experienced my tinnitus about 20 years ago. It has always only
      been in my left ear. I was very lucky as it vanished for the last few years - but it came back 2 weeks ago and
      it is worse than ever! It is now accompanied with shaking eyes which as far as I can tell is called
      oscillpsia. I went to my ear doctor and he just said it was probably Meuniere's and was no help at all (Surprise ! ) My symptoms are different than Meuniere's- the eye movement is exactly in
      coordination with the tinnitus noise ( which for me is cricket sound ). This makes me dizzy because I cannot focus and driving has
      become a challenge. It is occuring about every 5 minutes and lasts an average of 30 seconds.
      I just keep hoping it will go away again or at least calm down because it is really affecting my ability to
      get through the day.
      I appreciate anyone's input.
      • Hug Hug x 1
    2. Karen

      Karen Manager Staff Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Hi, Jen,

      I'm wondering if your condition could be nystagmus (involuntary eye movement). Here's a link:

      Have you been to an ophthalmologist about this condition? They might be able to suggest something that might help.

      Also, I had some nystagmus myself about a year ago, as a result of my tinnitus and its effects. I went to a chiropractic neurologist, and he helped me by giving me eye exercises to do. I may still have it a little bit, but I'm not really aware of it anymore. If you don't have a good eye doctor who can help you, maybe you could try going to a neurologist --- or you could try finding a chiropractic neurologist near you.

      I'll never really know what caused mine. It wasn't too bad, but sometimes my eyes twitched, and I got dizzy easily if I moved my eyes too rapidly.

      Does anyone else have additional input for Jen?
      • Like Like x 1
    3. Mad maggot

      Mad maggot Member

      New zealand
      Tinnitus Since:
      Cause of Tinnitus:
      I can't believe I just found your message. I've been searching the net for seven years. I've had this exact thing you're describing for that long. I've had three MRI scans of the brain and one of the ear. I thought I must have come across a post that I'd written myself and forgotten! I have clicking, cicada like noise in my left ear and it makes my vision jump around. When the noise stops my vision stops jumping. It can make me dizzy and hard to concentrate. The doctor sent me to a psychiatrist and said he's never heard of this before. The psych team said they couldn't help me and that this is obviously not a mental health proble, but a physical disorder. I am not depressed but it sure gets me down at times!
      • Like Like x 1
    4. Gennekenkin

      Gennekenkin Member

      Tinnitus Since:
      I will echo Mad maggot's comment - I couldn't believe how closely your words described symptoms I started to have 10 years ago. I had begun to notice slight bilateral tinnitus around 2001, went to an ENT specialist who told me it was TMJ. A bite guard did nothing to help the symptoms. Then, in August 2005, I began to feel like I was going to fall off my chair at work and started to have some problems with my balance while walking, which felt very much like I was trying to maintain my balance on a ferry or subway. About a month later, I was driving on the Interstate and had an attack that involved very loud, high pitched tinnitus accompanied by severe disequilibrium. (I realized later that I was probably experiencing nystagmus for the first time and visual problems were contributing to my sense of disequilibrium.) It took all the concentration I could muster to drive the rest of the way home. I was referred to an ENT who thought my symptoms might be due to a brain tumor, aneurysm, a potentially deadly brain inflammation, or MS. After several tests, brain imaging, and blood work, the first 3 possibilities were eliminated. The blood work revealed that I had an Epstein-Barr level that was 300% times higher than normal. I was put on steroids and anti-virals and experienced wonderful quiet (no tinnitus!) while on them. Of course, I couldn't stay on those drugs forever and when I was taken off of them, the symptoms returned. The frequency and duration were very similar to Jen's. I was referred to several specialists and had more tests, including another MRI. Everything kept looking normal. By early 2008 I was starting to have a tremor in my left hand. (I had begun to lose my sense of smell around the same time I started to experience the tinnitus.) My new neurologist ordered VEP (visual evoked potential) and BAER (brainstem auditory evoked response) tests. The BAER was normal, but the VEP show some significant deviation from normal. I was diagnosed with Parkinsonism and put on a generic for Sinemet. The tinnitus and nystagmus attached continued to occur randomly for several years. Eventually I stopped driving because the attacks were so unpredictable. I continue to have bilateral tinnitus and have learned to coexist with it, although sometimes it is extremely loud and high-pitched, especially when I'm feeling tired. Although my diagnosis was eventually changed to Parkinson's Disease, I just saw a specialist because I was starting to experience a new type of nystagmus, only noticeable when I try to read something. He diagnosed oscillopsia (downbeat nystagmus), which can be a symptom of Progressive Supranuclear Palsy (PSP). We're currently looking into possible causes. I have genetic markers for PD as well as several for PSP. Although the journey continues with its challenges, I try to remain positive and appreciate the abilities I still possess and do what I can to stay as well as I can, including Tai Chi.
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