Nystagmus upon waking up - Patient: Problems getting a diagnosis https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/ VeDA Discussion Board en-US Sat, 13 Jun 2026 08:36:36 +0000 wpForo 60 RE: Nystagmus upon waking up https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26923 Mon, 27 Jan 2025 11:03:14 +0000 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.

]]> Patient: Problems getting a diagnosis GabeG https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26923 RE: Nystagmus upon waking up https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26862 Wed, 08 Jan 2025 14:42:42 +0000 Patient: Problems getting a diagnosis SandStorm https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26862 RE: Nystagmus upon waking up https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26860 Wed, 08 Jan 2025 08:35:15 +0000 @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.

 

]]> Patient: Problems getting a diagnosis emilianogray https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26860 RE: Nystagmus upon waking up https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26828 Tue, 03 Dec 2024 14:48:43 +0000 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.

]]> Patient: Problems getting a diagnosis SandStorm https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26828 RE: Nystagmus upon waking up https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26827 Tue, 03 Dec 2024 14:45:25 +0000 You are very welcome Ellen! I would see a spine doc again...do you want me to send you spine doctors in your area?

]]> Patient: Problems getting a diagnosis SandStorm https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26827 RE: Nystagmus upon waking up https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26826 Tue, 03 Dec 2024 14:38:29 +0000 Patient: Problems getting a diagnosis Ellen OS https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26826 RE: Nystagmus upon waking up https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26825 Tue, 03 Dec 2024 14:17:09 +0000 Patient: Problems getting a diagnosis SandStorm https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26825 RE: Nystagmus upon waking up https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26824 Tue, 03 Dec 2024 01:18:10 +0000 @sandstorm no, only trying to turn my head to the right then left in bed. Do you have suggestions?

 

]]> Patient: Problems getting a diagnosis Ellen OS https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26824 RE: Nystagmus upon waking up https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26823 Mon, 02 Dec 2024 23:42:41 +0000 Patient: Problems getting a diagnosis SandStorm https://vestibular.org./forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26823 RE: Nystagmus upon waking up https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26822 Mon, 02 Dec 2024 20:16:58 +0000 Patient: Problems getting a diagnosis Ellen OS https://vestibular.org/forum/patient-problems-getting-a-diagnosis/nystagmus-upon-waking-up/#post-26822