Anyone else have a diagnosis of Oscillopsia?

[eternalrose3]

Hi I am 42 and a Non Drinker, Non drug user F and I am hoping to find someone else who has been diagnosed with Oscillopsia. I was first diagnosed with this 5 weeks ago, with 1 good symptom free week in between these 2 bouts of Oscillopsia. I dont know if getting the shot and getting viral syndrome from the Pertusis/Whooping cough part of the shot can connect me to being diagnosed with Oscillopsia but the viral syndrome from it (fever and chills after the tetanus shot sent me back to the ER) and the Oscillopsia both followed right after getting the shot. But the best way to describe this scary condition is that every thing in my vision field feels like it is moving, jumpy and feels like the earth is shaking in my head when I walk. I was diagnosed by 2 ENT doctors and was told that it involves my inner ear. I woke with vertigo on Monday after the shot and by Friday I awoke with the Oscillopsia and it was severe and I called 911 who thought it was vertigo only and my husband came home and took me to my ENT doctor who gave me this as a 2nd diagnosis on top of the vertigo. Both conditions make me physically sick at my stomach from the shaky movement feelings it makes me feel. I have had a negative MRI and CT. A few of the family doctors at my family practice has never even heard of this condition but it is very real. I feel helpless and like I am going crazy! I also don't know if this is something that is permanent? Or if it will come and go like it already has once? And if I will be tied to having it off and on for the rest of my life? I cant get straight answers and would like to know what you have been told if anyone out there that has had or have this Oscillopsia diagnosis and can relate to me? Thanks so much and blessings.

[Christopher R Newey, DO]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.

Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.

Oscillopsia is a true medical condition. However, the other symptoms you describe such as vertigo/dizziness may all be related. There is a condition called benign paroxysmal positional vertigo (BPPV) that is due to small particle in the inner ear that when they are dislodged can cause dizziness and nystagmus of the eyes. This condition is fairly common and can be corrected with simple head maneuvers.

I am not sure what you mean by oscillopsia, but I would suggest that you be evaluated by a neurologist and perhaps a neuro-ophthalmologist. It would be important to actually have oscillopsia distinguished from nystagmus and ocular flutter. Each has different differentials that would require differing treatment plans.

Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[Matinee888]

The symptoms you are describing were exactly what was happening to me years ago. I eventually found out I had a severe Thyroid problem that was the cause of it all. Have you had bloodwork done for your thyroid? Like your TSH, T3 and T4? I do know that your TSH should be at 2.00. Lorna Vanderhaeghe has a website with info on Thyroid and other hormonal problems. Maybe consider this.

[eternalrose3]

Dear Dr. Newey, Thank you for answering my questions. I am undergoing vestibular rehab now. They have said at my ENT that I dont have nystagmus of the eyes. I am scheduled for an ENG in October. Also, I have had BBPV off and on for 10 years with the possibility of Menieres disease. I have had the Epily procedure that worked once, but they wont do it anymore unless the nystagmus comes back, which it hasnt. They havent mentioned anything other than the BBPV and the Vertigo and they said the vertigo was happening to me because of the inner ear particles but has never told me what cases the Oscillopsia. Do you know what causes he Oscillopsia? I am being tossed between my family doctor, my ENT and the Vestibular Rehab sessions. They said I am likely to get sick from the ENG and that worries me because I am slowly getting better and if I am better when I get the ENG, I am afraid that they will set it off again. Is that possible? And do you know if this can be a permanent condition for me? Thanks so much for answering my question and the good luck wishes.