Diagnosis and Management of Chronic Head Pressure with Vestibular Symptoms
Primary Diagnosis: Likely Idiopathic Intracranial Hypertension (IIH) Without Papilledema
You most likely have IIH without papilledema, which occurs in approximately 23% of IIH cases and is frequently missed because physicians incorrectly believe papilledema is required for diagnosis. 1 Your constellation of constant head pressure, pulsatile tinnitus, seeing your pulse in peripheral vision, vestibular symptoms, and symptom relief when lying prone are classic for IIH, even without optic nerve swelling. 2, 3
Why IIH Remains the Leading Diagnosis Despite Normal Optic Nerves
- Papilledema is NOT required for IIH diagnosis - approximately 23% of confirmed IIH patients never develop papilledema 1
- Your pulsatile tinnitus and seeing your pulse in peripheral vision are highly specific for elevated intracranial pressure 4
- The 2-year duration of constant pressure, vestibular symptoms, and positional relief (better prone with head up) strongly suggest CSF pressure dysregulation 1
- IIH prevalence in chronic headache populations reaches 27%, far higher than previously recognized 1
Critical Diagnostic Steps You Need NOW
1. MRI Brain with Contrast + MR Venography (MRV)
- Look specifically for secondary signs of elevated ICP: empty sella, dilated optic nerve sheaths, flattening of posterior globes, transverse sinus stenosis 2, 3, 5
- Transverse sinus stenosis is the most sensitive MR finding for IIH 1
- MRV is mandatory to exclude cerebral venous sinus thrombosis, which can mimic IIH 5
2. Trans-Orbital Sonography (TOS)
- Showed optic nerve sheath dilation in 35.7% of IIH patients WITHOUT papilledema 1
- Non-invasive way to detect elevated ICP when fundoscopy is normal 1
3. Lumbar Puncture with Opening Pressure Measurement
- This is the definitive diagnostic test - opening pressure >250 mm CSF (or >280 mm if sedated) confirms IIH 2, 3, 5
- Must be done in lateral decubitus position, not sitting 5
- Normal CSF composition is expected in IIH 2, 3
- Provides immediate therapeutic benefit by reducing pressure 6
Alternative Diagnosis to Exclude: Spontaneous Intracranial Hypotension (SIH)
Your symptom of feeling better lying prone could paradoxically suggest LOW pressure (SIH) rather than high pressure, though this is less likely given your other symptoms. 4
Key distinguishing features:
- SIH typically causes orthostatic headache (worse upright, better lying flat) - you have constant pressure regardless of position 4
- SIH patients feel worse when upright and need to lie completely flat, not prone with head up 4
- Your pulsatile tinnitus and pulse-synchronous symptoms strongly favor HIGH pressure (IIH), not low 4
If MRI shows signs of LOW pressure (brain sagging, pachymeningeal enhancement, subdural collections), then pursue MRI whole spine looking for CSF leak 4
Treatment Algorithm Based on Diagnosis
If IIH is Confirmed (Most Likely):
Step 1: Weight Loss (Disease-Modifying)
- Target 5-15% weight loss - this alone can induce remission 5
- Refer to structured weight management program 5
- Consider bariatric surgery consultation for sustained weight loss 5
Step 2: Medical Therapy
Acetazolamide is first-line medication (not gabapentin, which you're currently taking) 2, 5
- Start acetazolamide and titrate dose as tolerated 2
- Discontinue gabapentin - it has no role in IIH treatment and is not addressing your underlying pathology
- Discontinue amitriptyline permanently - it already failed and you need IIH-specific treatment 2
Alternative/Adjunct medications:
- Topiramate helps through dual mechanism: carbonic anhydrase inhibition (lowers ICP) + appetite suppression (promotes weight loss) 2, 5
- Zonisamide if topiramate side effects are intolerable 2
- AVOID medications that lower CSF pressure if you have any component of low pressure: topiramate, indomethacin 4
Step 3: Headache-Specific Management
Your chronic headache likely has TWO components:
- Treat migraine component with standard migraine preventives AFTER addressing IIH 2, 7
- Avoid beta-blockers and candesartan - they lower blood pressure and may worsen orthostatic symptoms 4
- Two-thirds of IIH patients continue having headaches even after ICP normalizes, requiring ongoing migraine management 2, 7
Step 4: Surgical Intervention (If Medical Therapy Fails)
Indications for surgery: 5
- Progressive visual deterioration despite medical therapy
- Intolerable symptoms refractory to maximum medical therapy
- Medication intolerance
Surgical options in order of preference:
- Ventriculoperitoneal (VP) shunt - preferred due to lower revision rates 2, 5
- Optic nerve sheath fenestration (ONSF) - if vision threatened, fewer complications than shunts 2
- Venous sinus stenting - if significant transverse sinus stenosis with pressure gradient on catheter angiography 4
Critical Pitfall to Avoid
Serial lumbar punctures are NOT recommended for IIH management 2 - they provide only temporary relief and are not a treatment strategy.
Monitoring Requirements
Follow-up schedule: 2
- Ophthalmology evaluation every 3-6 months to monitor for papilledema development
- Visual field testing to detect subclinical vision loss
- More frequent monitoring if papilledema develops or vision changes
What About Your Vestibular Symptoms?
Your balance issues, motion sensitivity, and "rocking on a boat" sensation have three possible explanations:
- Direct effect of elevated ICP on vestibular system - pressure affects inner ear function 8, 6
- Orthostatic intolerance from chronic illness - consider orthostatic rehabilitation if symptoms persist after ICP normalization 4
- Possible superior semicircular canal dehiscence (SSCD) - can cause similar symptoms and pulsatile tinnitus 4
If vestibular symptoms persist after IIH treatment, request dedicated temporal bone CT to evaluate for SSCD 4
Why Your Current Treatment Isn't Working
- Gabapentin has no role in IIH treatment - it doesn't lower intracranial pressure 2
- Amitriptyline failed because it doesn't address the underlying pathophysiology 2
- You need carbonic anhydrase inhibitors (acetazolamide or topiramate) that actually reduce CSF production 2, 5
Immediate Action Plan
- Request MRI brain with contrast + MRV from your physician 5
- Request trans-orbital sonography 1
- Demand lumbar puncture with opening pressure measurement - this is non-negotiable for diagnosis 2, 5
- If opening pressure >250 mm CSF, start acetazolamide and discontinue gabapentin 2, 5
- Initiate weight loss program if BMI >30 5
- Establish ophthalmology follow-up even without current papilledema 2
Treatment failure rates are significant - 34% have worsening vision at 1 year, 45% at 3 years, and one-third to one-half continue having headaches despite treatment 2 - so aggressive early intervention is critical.