Do my symptoms of constant pressure in the nose, eyes, outer cheekbones, jaws, and head, accompanied by balance issues, dizziness, pulsatile tinnitus, and relief when laying on my stomach or left side, suggest Idiopathic Intracranial Hypertension (IIH) despite having swollen optic nerves that later resolved?

Your Symptoms Are Highly Consistent with IIH and Warrant Lumbar Puncture with Opening Pressure Measurement

Based on your symptom constellation—particularly the constant pressure, pulsatile tinnitus, eye pain with movement, dizziness, and history of swollen optic nerves—you should strongly advocate for diagnostic lumbar puncture with opening pressure measurement, as these symptoms align closely with IIH despite the atypical positional relief pattern. 1, 2

Why Your Symptoms Match IIH

Your presentation includes multiple hallmark features of IIH:

Classic IIH Symptoms You're Experiencing

• Pulsatile tinnitus: This whooshing sound synchronous with your pulse is a common and characteristic symptom of IIH 3, 1, 2
• Constant pressure in head, eyes, and face: Progressive pressure that has been constant for two years fits the typical IIH headache pattern, which is progressively more severe and frequent 3, 1
• Eye pain with movement and heavy sensation: Pain when moving your eyes in specific directions is consistent with IIH 1
• Transient visual obscurations would be expected: While you didn't mention these specifically, they manifest as brief darkening of vision lasting seconds 3, 1
• Dizziness and balance issues: These are recognized symptoms of IIH 3, 2, 4
• Regular tinnitus in both ears: Tinnitus is a documented symptom 3, 1
• Constant ear pressure requiring popping: This aligns with IIH symptomatology 3
• Motion sensitivity and difficulty with visual tracking: These symptoms fit within the spectrum of visual disturbances in IIH 1

The Optic Nerve Finding Is Critical

Your history of swollen optic nerves in the past is extremely significant. 1, 2

• Papilledema (swollen optic nerves) is the hallmark finding in IIH and was documented in your case 1, 2
• The fact that they appeared "fine" later doesn't exclude IIH—papilledema can fluctuate with treatment or spontaneous pressure variations 1
• This prior finding of papilledema combined with your ongoing symptoms makes IIH a strong diagnostic consideration 1

The Atypical Feature: Positional Relief

Your relief when lying on your stomach or left side is indeed unusual for IIH, and this deserves acknowledgment:

• Typical IIH patients experience worsening symptoms when lying flat due to increased intracranial pressure in the supine position 1
• However, none of the IIH symptoms are pathognomonic (uniquely diagnostic), meaning atypical presentations occur 2
• The headache phenotype in IIH is highly variable and may mimic other primary headache disorders, making clinical diagnosis challenging 3, 1, 2
• Your neck muscle tension that provides slight relief when massaged could indicate a secondary muscular component overlaying the primary IIH process 3

The presence of one atypical feature should not dissuade you from pursuing IIH diagnosis when multiple other classic features are present. 1, 2

Why Lumbar Puncture Is Essential

Diagnostic Requirements

You cannot definitively diagnose or exclude IIH without measuring CSF opening pressure. 1, 2

• CSF opening pressure ≥25 cm H₂O measured in the lateral decubitus position is required to diagnose IIH 1, 2
• Proper technique is essential: you must be positioned on your side, legs extended, relaxed, breathing normally, with measurement taken after pressure stabilizes 1, 2
• Pressure can fluctuate in IIH, so if initial measurement is borderline or normal but clinical suspicion remains high, repeat lumbar puncture at 2 weeks should be considered 2

Before Lumbar Puncture: Required Imaging

You must have appropriate neuroimaging first 1, 2:

• MRI brain is mandatory to exclude secondary causes (mass, hydrocephalus, structural lesions) 1, 2
• CT or MR venography is mandatory to exclude cerebral venous sinus thrombosis 1, 2
• Look for supportive MRI findings: posterior globe flattening (100% specificity), optic nerve protrusion (100% specificity), optic nerve tortuosity (83% specificity), enlarged optic nerve sheath, or empty sella 2

Addressing Your Fear of Spinal Tap

Your fear is understandable, but consider these points:

• The risk of permanent visual loss from untreated IIH far exceeds the risks of lumbar puncture 1, 5
• Progressive visual loss is the most serious morbidity of untreated IIH 1
• You've already suffered for two years with constant symptoms affecting your mental health—diagnosis is the first step toward relief 1
• The lumbar puncture itself is both diagnostic AND potentially therapeutic, as CSF removal can provide temporary symptom relief 4, 6

Critical Next Steps

Immediate Actions

1. Request urgent MRI brain within 24 hours (or CT if MRI unavailable, followed by MRI) 1, 2
2. Request CT or MR venography within 24 hours to exclude venous sinus thrombosis 1, 2
3. If imaging shows no contraindications, request lumbar puncture with opening pressure measurement 1, 2
4. Ensure proper LP technique: lateral decubitus position, legs extended, relaxed, breathing normally 1, 2

What to Tell Your Doctor

Present your case emphasizing:

• History of documented papilledema (swollen optic nerves) 1
• Pulsatile tinnitus—a highly characteristic IIH symptom 3, 1
• Two years of constant pressure symptoms 1
• Eye pain with movement 1
• Dizziness and balance issues 3, 2
• You fit the typical demographic if you are female of childbearing age with BMI >30 kg/m² 1, 2

Common Pitfalls to Avoid

• Don't let doctors dismiss your symptoms because one feature is atypical—the headache phenotype in IIH is highly variable and can mimic other disorders 3, 1, 2
• Don't accept "your optic nerves look fine now" as excluding IIH—papilledema can fluctuate, and you may have IIH without current papilledema (rare subtype) 1, 4
• Don't delay because of LP fear—untreated IIH can cause permanent blindness 1, 5
• Insist on proper LP technique—improper positioning leads to inaccurate measurements and missed diagnoses 1, 2

If IIH Is Confirmed

Treatment options include 4:

• Weight loss (5-15% body weight can lead to remission) 1, 4
• Acetazolamide (carbonic anhydrase inhibitor) 4, 7
• Topiramate 4
• Surgical options if vision deteriorates: VP shunt, optic nerve sheath fenestration, or venous sinus stenting 3, 4

Your symptoms warrant thorough investigation for IIH. Advocate firmly for the diagnostic workup outlined above. 1, 2