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Has anyone ever had (and recovered) from oscillopsia/retinal slip/"bounding" vision?

Posted , 10 users are following.

dee50000
dee50000

It's almost undescribable, and no one can fully grasp what it is unless they have been affected by it. It isn't really dizziness, although I feel like I am way off-balance, and often veer to one side or another. Only one other people that I have known that had it (and actually got over it) were my cousin, who is quite a bit older than me, and my physical therapist who was treating me for BBPV (vertigo with the CaCO3 crustals that are out of place in your inner ear); she said hers was from an antibiotic she was on, and when her dr. gave her another antibiotic, it stopped.

I don't fit into any of the categories of people who get this rare condition... I never took medicines that may cause it, I don't have an auto-immune disease, a brain lesion, etc. and the neurology specialists I ahve seen can't figure it out either. MRI showed no problems, but ENG testing (calorics test,, where they blow warm and cold air into your ear and you are supposed to get dizz) I had at the ENT office showed I had a moderate deficit in both ears.

I've been doing vestibular rehab training (on my own) for over 7 months with no change. I've had this for just about a year now, and would appreciate any similar stories, what caused it, what did you do to get over it, etc.!

0 likes, 33 replies

33 Replies

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  • candim
    candim dee50000

    Posted

    Hi Dee, I would love to talk to you as I have the same symptoms as you. I was originally diagnosed with bilateral vestibulopathy, but then later seen a different specialist who diagnosed me with vestibular migraine. Are you able to email me?
  • JKF
    JKF dee50000

    Posted

    Hello Dee

    I am a 64 year old male who contracted Crypto Coccul Menengitis in 2000. As a result, I have lost my bilaterial inner ear function. In other words, I have no vestibular nerve system. I have fought this condition for almost 17 years now, with great success. By that, I mean I am able to function in every walk of life. Not very well sometimes, but I can get by nicely. I am always falling to my right, walking a straight line is impossible, I am always searching by feel to know where I am physcially, everything moves slightly, when in a car driving on a bumpy road everything jiggles and will not focus, undulations when I walk is a nightmare, and on and on and on. But, with continuious eye exercises and balance exercises, I am able to play golf, work, drive, fly in planes for work, and no one notices my condition unless they see me suddenly catch myself as I begn to fall or are off balance. The good news is, I'm alive. My chances of survival were slim, and I was expected to die. But with excercises, dedicaiton, and prayers, I have been able to live a fairly normal life.

    There is much more to my story, but I did want to give you a shout and get this off my chest. If you would like to communicate further, please send me an email.

    Roll Tide!

    Jim

    • sharon54396
      sharon54396 JKF

      Posted

      Howdy! ( gig 'em aggies! )

      I'm interested in your rehab...I'm 55 with quite a few medical problems, but this Oscillopsia wins the prize. I'd love any advice.....

  • sharon54396
    sharon54396 dee50000

    Posted

    I was desperately looking for info about Oscillopsia...after 8 months of treatment for labyrinthitis, I went back to the ent who scheduled an ENG test. This test showed I had no functionality of the middle ear in either ear.. three months previous to the onset I had been treated with vancomycin ( a lot ) for peritonitis. The drs think this is the cause of my Oscillopsia . I'm unable to walk, drive, etc it's truly devastating. How rare is it?

  • Jay1806
    Jay1806 dee50000

    Posted

    I had a transmastoid Labyrinthectomy nine weeks ago. I realise now that I have probably got oscillopsia as a result, and pray it improves.

    My vestibular Physio is non commital in her comments now, after originally being very positive.

    This is a living hell, vrt exercises but no progress. Going outside is a nightmare. I am self employed and just do a couple of hours to pay my overheads.

    I did have a duodenal ulcer bleed the week before my imbalance symptoms kicked off again (I have had left ear problems since childhood) and was administered antibiotics but not sure if they were of the 'mycin' family.

    I really hope this is temporary, but it's just not improving.

    Thanks for listening

    Jason

  • sharon54396
    sharon54396 dee50000

    Posted

    I've had Oscillopsia for over a year. I have much wrong with me, medically speaking, but this has affected my life negatively more than anything else. I, too, would love to hear how others are dealing with it. Right now I use a wheelchair although I try to walk the hallway in my house as much as possible. FROM what I understand, it is incurable. Anybody hear differently?

    • Jay1806
      Jay1806 sharon54396

      Posted

      Sorry you're suffering too Sharon. Let's hope someone on here can give us a positive story of relative recovery.

    • sharon54396
      sharon54396 Jay1806

      Posted

      so what was involved in the labrynthectomy? Any help at all?
    • patricia05532
      patricia05532 sharon54396

      Posted

      To Sharon and Jay, I have just signed in to find you talking about oscillopsia which has excited me greatly. I have wanted to find others who understand the debilitating experience of Oscillopsia so as to help with my feelings of being alone with it. I would like to keep in touch. I do have 20 years experience of oscillopsia..so I was also very interested in JKF comments of how he/she copes. I need to communicate with people who are suffering oscillopsia too. But it is probably too rare for me to find anyone near me. So I must depend on this. Which is a great improvement on having no one to talk to.
    • Jay1806
      Jay1806 sharon54396

      Posted

      No Sharon, 6 months on and I am still at least 10 times worse than before surgery. Just about keeping a business going and no help financially. Awaiting MRI results and vestibular engineering on the 'good ear'. Living hell. Devastated to be honest. Sorry for the late reply but I barely come on here now. 

      Jason

    • Jay1806
      Jay1806 patricia05532

      Posted

      Sorry for the late reply Patricia, I haven't been in the forum of late. As you can see I have been living in Oscillopsia hell for over 6 months now and it is rueful. My life is not the same, it is so debilitating. OF course you can keep in touch. Any help appreciated. 

    • johnmac1931
      johnmac1931 patricia05532

      Posted

      Patricia,

      i have just just been diagnosed with Oscillopsia and have all the symptoms mentioned and would like to speak with others that know what’s it feels like would like to chat and keep in touch. 

      Regards

      John Mac 

      UK

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