[GerLu]

Hi everyone,

I’m writing on behalf of my father (mid-70s), who has been struggling with persistent swaying dizziness, unsteady gait, and a “foggy head” feeling for over two years now. He describes it like “wearing a helmet” or being wrapped in cotton wool – disorienting but not spinning vertigo.

Here’s a short medical background:

• Diagnosed with thoracic myelitis about two years ago
• Closed tuberculosis (non-pulmonary) – treated and stable
• Ankylosing spondylitis (currently on Enbrel)
• Past pulmonary embolism – on blood thinners (Lixiana)
• Sleep apnea – using CPAP mask
• High blood pressure – under control
• Neurology found a hydrocephalus (“water on the brain”) in early scans
• A lumbar puncture was done, and my father felt a short-term improvement afterward
• ENT/Hearing clinics (including a specialized dizziness clinic) found nothing
• Currently no spinning vertigo or nausea – more like imbalance and brain fog

We’ve tried various treatments (including steroids in the past), but the main disabling symptom is still this chronic dizziness, which prevents him from walking safely or concentrating for long.

My questions:

• Has anyone experienced similar dizziness after myelitis or in connection with hydrocephalus?
• Could this be a case of normal pressure hydrocephalus (NPH), even if symptoms are mild or atypical?
• Have any of you found relief through shunt surgery, acetazolamide, or other medication (e.g. piracetam, betahistine, antidepressants)?
• Any rehab programs or clinical centers (in Europe, especially Germany, where we live) you would recommend?

I’d be so grateful for any insights or shared experiences – it’s been a long journey for him and we’re trying to find the right path forward.

Thank you!