What could be causing my persistent headaches, nasal spasms, and pressure in my head, face, and sinuses, despite clear MRI and MRV scans, and a history of swollen optic nerves and normal sinus evaluations?

Evaluation of Persistent Headaches and Pressure Symptoms with Clear Neuroimaging

You likely have idiopathic intracranial hypertension (IIH, also called pseudotumor cerebri), which requires lumbar puncture with opening pressure measurement to confirm the diagnosis, despite your clear MRI and MRV scans. 1

Understanding Your Clinical Picture

Your constellation of symptoms—swollen optic nerves (papilledema), persistent headaches, pressure sensations, balance issues, and plugged ears—strongly suggests elevated intracranial pressure even though your brain imaging appears normal. This is the hallmark presentation of IIH 1.

Why Normal Imaging Doesn't Rule Out IIH

• MRI can appear completely normal in IIH while intracranial pressure remains dangerously elevated 1
• The diagnosis of IIH specifically requires normal brain parenchyma without hydrocephalus, mass, or structural lesion on MRI—which matches your situation 1
• Secondary signs of increased intracranial pressure on MRI (empty sella, dilated optic sheaths, flattening of posterior globes) may be subtle or absent 1

The Inconsistent Papilledema Finding

The fact that one provider saw papilledema but your optometrist didn't find it later is actually not reassuring—papilledema can fluctuate, and this variability doesn't exclude the diagnosis 2, 3. Patients with papilledema typically present with exactly your symptoms: headache, nausea, balance problems, and altered consciousness 2.

Critical Next Steps

You need a lumbar puncture with opening pressure measurement immediately 1. This is the only way to definitively diagnose or exclude IIH. The procedure should be done:

• After neuroimaging (which you've already completed) 4
• With measurement of opening pressure in the lateral decubitus position
• With CSF analysis to exclude meningeal processes 4

What the Lumbar Puncture Will Show

• Opening pressure >25 cm H₂O confirms IIH in the appropriate clinical context 1
• Normal CSF composition (excluding infection or inflammation) 1
• The procedure itself may provide temporary symptom relief if pressure is elevated 5

Why Your Sinus Symptoms Are Likely Unrelated

Your extensive sinus workup being negative is actually important information—it redirects focus away from rhinosinusitis and toward intracranial causes 1:

• Facial pain alone is rarely caused by chronic rhinosinusitis 1
• Multiple ENT evaluations and attempted surgery found nothing—this essentially excludes sinus disease as your primary problem 1
• The pressure sensations you describe correlating with balance problems point to intracranial rather than sinus pathology 1

The "Sinus Headache" Misdiagnosis Trap

Many patients with migraines or IIH are misdiagnosed with "sinus headaches" because they have nasal symptoms and facial pressure 1. Your nasal spasms and pressure could represent:

• Cranial autonomic symptoms from elevated intracranial pressure 1
• Trigeminal nerve involvement from pressure effects 4
• Not actual sinus disease (which your workup confirmed) 1

Understanding the Two-Year Progression

The fact that your symptoms have been unrelenting for two years since the pressure buildup episode is concerning and requires urgent evaluation 1:

• Untreated IIH can cause permanent vision loss from chronic papilledema 2, 3
• Your balance problems and ear symptoms (plugged sensation) are consistent with elevated intracranial pressure affecting vestibular function 1
• The correlation between pressure and balance you describe is a red flag for intracranial pathology 1

Treatment Implications If IIH Is Confirmed

If lumbar puncture confirms elevated opening pressure:

• Weight loss is first-line treatment if you are overweight (IIH is strongly associated with obesity) 1
• Acetazolamide (Diamox) to reduce CSF production 1
• Serial lumbar punctures for pressure relief 5
• If vision-threatening: surgical options including CSF shunting or venous sinus stenting 5

Monitoring Requirements

• Regular ophthalmologic examinations to monitor for progressive optic nerve damage 1, 2
• Visual field testing to detect early vision loss 3
• Repeat imaging only if new symptoms develop 1

Alternative Considerations If LP Is Normal

If your opening pressure is normal, then consider:

• Primary headache disorder (migraine with cranial autonomic features) 1
• Post-traumatic headache (though you don't mention trauma) 1
• Medication overuse headache if you've been taking frequent pain medications 1
• Referral to specialized neurology for neuropathic pain evaluation 1

The Pragmatic Approach to Persistent Facial Pain

If IIH is excluded, treatment should shift to neuropathic pain management 1:

• Trial of amitriptyline as first-line 1
• Triptans if migraine features are present 1
• Referral to headache specialist if first-line treatment fails 1

Common Pitfalls to Avoid

• Do not accept "normal MRI means nothing is wrong"—IIH requires LP for diagnosis 1
• Do not pursue further sinus interventions—your extensive negative workup excludes this 1
• Do not delay ophthalmologic follow-up—vision loss from papilledema can be irreversible 2, 3
• Do not assume fluctuating papilledema means it wasn't real—this can occur with IIH 2, 3