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Eyes and Ears: Vertigo, Nystagmus and Migraine

Sharing so others may have something to consider as possibilities in their migraine journeys.

Migraine with head pain is well managed in treating rapid eye movement (REM) sleep behavior disorder (RBD) with clonazepam and preventative use of Aimovig. Vertigo, dizziness, and nystagmus persist despite this as well as managed orthostatic intolerance and hypotension.

My newest diagnosis

It seems every time I manage to manage some condition there is still another that persists. I have also begun successful treatment of bipolar with ultra-low dose lithium.

I was recently evaluated for and diagnosed with vestibular ocular reflex (VOR) syndrome. The physical therapist and neurologist say the condition both affects migraine and is a stand-alone condition. It can have various underlying causes (including migraine), and currently, my doctors say for me it is likely associated with Ehlers-Danlos Syndrome which causes poor proprioception and affects neurological signals (it may even be the cause of migraine).

Background on VOR

Basically with VOR, the information from the eyes and the ears is mismatched to each other and/or the environment when it reaches the brain. It causes vertigo, nystagmus, dizziness, and nausea. It can also create Alice In Wonderland Syndrome which for me it seems to do so.

There is currently no cure nor highly effective medication. Medication to treat dizziness, vertigo, and nausea does not actually treat the malfunction of the VOR. Physical therapy can manage the condition, though for me it is expected to be lifelong management. For some, it can resolve (more likely if VOR is associated with an injury and there is general healing from that injury).

A test to rule out other conditions such as MS will be conducted if the physical therapy proves ineffective for me. I take Zofran before PT to mitigate the induced temporary worsening of symptoms from PT. I do home-based PT in the evenings since for me Zofran is mildly sedating and I do other therapies at the same time.

My advice

If vertigo, dizziness, and nystagmus are intense and or persistent symptoms for you despite treatment, I do encourage you to talk to your provider about checking for VOR or ruling it out. It’s personally frustrating to acquire yet another diagnosis and have even more therapy to do. I am glad though to have a name for my experience, and validation for why I seek a plain visual field and I hope that physical therapy will help.

Hugs everyone!

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