LymeNet Flash: Susac's syndrome anyone? Or oscillopsia?

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Susac's syndrome anyone? Or oscillopsia?

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Topic: Susac's syndrome anyone? Or oscillopsia?

mjo
LymeNet Contributor
Member # 7876

posted

Has anyone ever been diagnosed with Susac's syndrome?

Most of my hearing has been lost in one ear and the other is losing hearing too. Can't tolerate hearing aids due to hyperacusis.

I also have oscillopsia, a condition wherein the images in my vision vibrate like film off the reel. (Easy to understand if you're old enough to remember what film on reels could do when it came off the spindles but the images were still projected on the screen.)

I tried to explain this happening in my vision to countless ENTS, oto-neurologists and neurologists who didn't seem to care, but then again, I didn't know this condition even had a name until a few days ago.

Posts: 422 | From Luck home | Registered: Sep 2005 | IP: Logged |

BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251

posted

I've had this. I've also heard it referred to as ocular migraines.

It happens in my peripheral vision.

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Must...find...BRAIN!!!

Posts: 2867 | From Pacific NW | Registered: Apr 2010 | IP: Logged |

mjo
LymeNet Contributor
Member # 7876

posted

Interesting. For me it's the whole range of vision.

Posts: 422 | From Luck home | Registered: Sep 2005 | IP: Logged |

Keebler
Honored Contributor (25K+ posts)
Member # 12673

posted

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Susac's syndrome can be an umbrella diagnosis and I see how lyme, other TBD, other stealth infections can be the cause. Be sure your LLMD is involved. It's nearly impossible to find a LL neurotologist but if not LL, in my experience, they can spin you in circles.

NYSTAGMUS is also where the vision spasms, bounces, etc. due to toxicity and very much something that anyone with any kind of inner ear stress & lyme can experience.

MAGNESIUM is the #1 helper to calm those eye spasms.

Be sure your LLMD is totally on board for any exam or diagnoses regarding inner ear / vision. Some details here may be of help.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
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Posts: 48021 | From Tree House | Registered: Jul 2007 | IP: Logged |

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