Clinical Assessment: IIH Without Papilledema vs. Vestibular Migraine
Your presentation is most consistent with IIH without papilledema (IIHWOP), and you absolutely need a lumbar puncture with opening pressure measurement to confirm this diagnosis, despite normal eye exams. 1
Why IIH Without Papilledema Is the Leading Diagnosis
Your symptom constellation strongly suggests IIHWOP rather than vestibular migraine, and your neurologist's reasoning about episodic presentation is outdated:
Key Supporting Features for IIHWOP:
Pulsatile tinnitus is present in a significant proportion of IIH patients and is a hallmark symptom that distinguishes IIH from primary headache disorders 1
Positional worsening (worse lying on right side, better on stomach/left side) directly reflects intracranial pressure dynamics characteristic of IIH 1
Continuous, unremitting symptoms for 2+ years with pressure sensation is entirely consistent with IIHWOP - the requirement for "episodic" presentation your neurologist mentioned is incorrect 1
Motion sensitivity and persistent imbalance can occur in IIH due to increased intracranial pressure effects on vestibular structures 1
Muffled hearing and ear pressure are commonly reported in IIH patients 1
Migrainous headache features occur in 68% of IIH patients, so having migraine-like pain does NOT exclude IIH 2, 3
Critical Diagnostic Gap:
The absence of papilledema does NOT rule out IIH. 1 IIHWOP is a recognized diagnostic entity where patients meet all criteria for IIH except visible optic disc swelling. This is why lumbar puncture with opening pressure measurement is essential - it's the only way to definitively diagnose or exclude this condition. 1
Why Vestibular Migraine Is Less Likely
While vestibular migraine can cause dizziness and imbalance, several features argue against it as your primary diagnosis:
Vestibular migraine typically presents with episodic attacks lasting minutes to hours (occasionally days), not continuous symptoms for 2+ years 1
Pulsatile tinnitus is not a feature of vestibular migraine but is highly specific for vascular/pressure-related pathology 1
The dramatic positional component (working on stomach for relief) is characteristic of CSF pressure dynamics, not migraine 1
Regular tinnitus (high-pitched screech) combined with pulsatile tinnitus suggests venous sinus involvement seen in IIH 1
The Lumbar Puncture Is Essential
You must advocate strongly for a lumbar puncture with opening pressure measurement. 1 Here's why:
Opening pressure >25 cm H₂O in the absence of papilledema confirms IIHWOP 1
Even pressures in the 20-25 cm H₂O range warrant consideration of IIH in the right clinical context 1
This is the ONLY definitive test to diagnose or exclude IIH when imaging is normal 1
Your fear of the procedure is understandable, but leaving this undiagnosed means potentially years more of disability 1
Imaging Considerations You May Still Need
If lumbar puncture confirms elevated opening pressure, you should discuss with your neurologist:
CT or MR venography to evaluate for venous sinus stenosis, which is found in a high percentage of IIH patients and may be treatable with venous sinus stenting 1
Venous sinus stenosis can cause IIH and is associated with excellent response to stenting: 78-83% improvement in headache, 95% improvement in tinnitus 1
Treatment Implications If IIH Is Confirmed
If your opening pressure is elevated, treatment options include: 2, 4
First-Line Medical Management:
- Acetazolamide 250-500 mg twice daily, titrating up to maximum 4g daily (though 1-1.5g is often sufficient) 2
- Topiramate as alternative, starting 25mg and escalating to 50mg twice daily - has added benefits of weight loss and migraine prophylaxis 2, 3
Why Gabapentin Isn't Helping:
- Gabapentin is not a standard treatment for IIH and would not address elevated intracranial pressure 2, 4
- This explains why you feel worse - you're not treating the underlying condition 2
Headache-Specific Management:
- Short-term: NSAIDs or indomethacin (indomethacin specifically reduces ICP) 3
- Avoid opioids completely 2, 3
- Migraine preventatives that don't cause weight gain: candesartan or venlafaxine 2, 3
- Triptans for acute attacks (maximum 10 days/month to avoid medication overuse headache) 3
Advanced Options If Medical Therapy Fails:
- Venous sinus stenting if venography shows stenosis with pressure gradient on manometry 1
- CSF shunting (VP or LP shunt) for progressive symptoms, though this is generally NOT effective for headache alone 2, 3
Critical Next Steps
Insist on lumbar puncture with opening pressure measurement - this is non-negotiable for diagnosis 1
If LP shows elevated pressure (>25 cm H₂O), request CT or MR venography to evaluate for venous sinus stenosis 1
Stop gabapentin and discuss starting acetazolamide or topiramate with your neurologist 2
Address weight if applicable - weight loss is foundational to IIH treatment 2
Consider seeking a second opinion from a neurologist with specific expertise in IIH or a neuro-ophthalmologist if your current provider remains reluctant to pursue LP 1
Common Pitfalls to Avoid
Don't accept "normal eye exam rules out IIH" - IIHWOP exists and requires LP for diagnosis 1
Don't continue ineffective treatments like gabapentin when the underlying diagnosis hasn't been confirmed 2
Don't develop medication overuse headache - limit simple analgesics to <15 days/month, triptans to <10 days/month 3
Don't delay diagnosis - while IIH rarely causes acute vision loss in IIHWOP, chronic symptoms severely impact quality of life and are treatable 1, 2
Your symptoms are real, disabling, and deserve definitive diagnosis. The lumbar puncture is the key test that has been missing from your workup.