I have been previously diagnosed with BPPV, had the Epley many times and vertigo/dizziness returns. A Physical therapist thought it was neck related, I do have neck pain. Dizziness has gotten a lot better since I lowered my pillow and do neck strengthening exercises. Now upon waking I turn my head to the right and left, I still feel some dizziness on the right but it’s improved. I sometimes wake with nystagmus and this morning was the first time I turned my head during nystagmus and it provoked vertigo and continued dizziness. The only diagnosis I have is BPPV, I don’t understand nystagmus upon waking. I have become phobic about Epley maneuvers and reluctant to go back to the ENT. Thoughts?
Have you seen a vestibular & balance specialist?
@sandstorm yes I saw a PT who specialized in vertigo who said it was bppv but also neck/posture related. I have also gone several times to an ENT who does the Dix, confirms nystagmus then the Epley. Dizziness returns in weeks.
@sandstorm no, only trying to turn my head to the right then left in bed. Do you have suggestions?
@ellenos Yes, please see a different vestibular specialist. I can help you find one in your area. Have you seen a spine doc?
@sandstorm years ago I had a spine mri for back pain. I live in Plymouth MA. Thank you SO much!
You are very welcome Ellen! I would see a spine doc again...do you want me to send you spine doctors in your area?
I have done the gazing eye exercises, but your issue sounds very different from what I had. I had a vestibular dysfunction caused by a virus attacking my inner left ear.
@sandstorm yes I saw a PT who specialized in vertigo who said it was bppv but also neck/posture related. I have also gone several times to an ENT who does the Dix, confirms nystagmus then the Epley. Dizziness returns in weeks io games
Poor posture or neck issues can contribute to dizziness. Tension or misalignment in the neck may affect blood flow or nerve signals, leading to symptoms that mimic or exacerbate BPPV.
It sounds like you're dealing with a frustrating and complex situation. While BPPV is a common cause of vertigo and nystagmus, the persistence of your symptoms and their connection to neck movement may suggest there’s more to investigate. It’s promising that lowering your pillow and doing neck-strengthening exercises have helped, as this could indicate a cervical component, such as cervicogenic dizziness. However, the nystagmus and vertigo upon waking still point to an inner ear issue, like BPPV or possibly another vestibular condition.
Given your reluctance to do the Epley maneuver or revisit the ENT, consider seeing a neurologist or a vestibular physical therapist for a more comprehensive evaluation. They can assess for alternative diagnoses (like vestibular migraine or cervicogenic vertigo) and guide you toward treatments that don’t involve the Epley if it feels too distressing. Keeping a detailed symptom journal, noting what movements or situations provoke your dizziness, might also help narrow down the cause. Don’t hesitate to advocate for yourself—your discomfort deserves to be addressed fully.
