Understanding IIH Headaches

How high pressure headaches differ from regular headaches

⚠️ Important Note

This information is for educational purposes only. Always consult with your healthcare provider about your specific symptoms. If you experience sudden severe headaches, vision changes, or other concerning symptoms, seek immediate medical attention.

What Makes IIH Headaches Different?

IIH headaches are caused by increased pressure around your brain. They have specific characteristics that help distinguish them from regular headaches or migraines.

🎯 Location & Feeling

  • Pressure sensation - Often described as feeling like your head might explode
  • All-over pain - Usually affects the entire head, not just one side
  • Behind the eyes - Significant pressure or pain behind both eyes
  • Throbbing quality - May pulse with your heartbeat

⏰ Timing Patterns

  • Morning headaches - Often worst when first waking up
  • Worse when lying flat - Pain increases when horizontal
  • Daily occurrence - Present most days, not occasional
  • Gradual onset - Usually builds slowly over weeks/months

🔄 What Makes It Worse

  • Bending over - Leaning forward increases pressure
  • Coughing or sneezing - Any straining worsens pain
  • Physical exertion - Exercise can intensify symptoms
  • Valsalva maneuvers - Bearing down (like during bowel movements)

🔔 Associated Symptoms

  • Pulsatile tinnitus - Whooshing sound in ears with heartbeat
  • Visual disturbances - Blurry vision, double vision, or brief vision loss
  • Neck or shoulder pain - Stiffness and discomfort
  • Nausea - May occur with severe headaches

High Pressure vs. Low Pressure Headaches

💡 Easy Way to Remember

High Pressure (IIH) headaches feel like when you're going up in an airplane and need to blow your nose or "pop" your ears to equalize the pressure - that uncomfortable, building pressure sensation.

Low Pressure headaches feel sharp and sudden, like an ice cream headache or "brain freeze" when you eat something cold too quickly.

☕ The Caffeine Test

Low Pressure headaches: Taking a caffeine tablet or drinking strong coffee will often improve the symptoms within 30-60 minutes.

High Pressure (IIH) headaches: Caffeine will typically make the headache worse or have no beneficial effect.

Note: This is an informal test that some people find helpful, but always consult with your healthcare provider for proper diagnosis and treatment.

Characteristic High Pressure (IIH) Low Pressure
How it feels Like airplane ear pressure - building, uncomfortable pressure that needs to "pop" Like ice cream headache - sharp, sudden, piercing pain
Position Worse when lying down Better when lying down
Morning Worst in the morning Better in the morning
Standing up May improve slightly Significantly worse
Quality Pressure, fullness, throbbing Sharp, stabbing, piercing
Location All over, behind eyes Back of head, neck
Caffeine Response Makes headache worse or no improvement Often improves within 30-60 minutes

IIH Headaches vs. Migraines - Important Differences

⚠️ Common Misdiagnosis Issue

Many neurologists frequently see migraines in their practice and may initially diagnose IIH headaches as migraines. However, these are completely different conditions with different underlying causes.

Characteristic IIH Pressure Headaches Migraines
Underlying Cause Increased intracranial pressure from excess CSF Neurological disorder affecting blood vessels and nerves
How it feels Pressure, like airplane ear pressure that needs to "pop" Throbbing, pulsing, often one-sided
Position dependency Worse when lying flat, better when upright Position usually doesn't matter significantly
Visual symptoms Papilledema, vision loss, double vision Aura (flashing lights, zigzag patterns) before headache
Daily pattern Often present daily, worst in morning Episodic attacks with pain-free periods
Response to typical migraine medications Little to no improvement Often effective during attacks

🚫 Why Migraine Treatments Don't Work for IIH

Migraine medications (such as anticonvulsants like topiramate for prevention, or SSRIs) target brain chemistry and blood vessel changes that cause migraines.

IIH headaches are caused by physical pressure from excess cerebrospinal fluid. The underlying mechanism is completely different, so migraine treatments typically provide little to no relief.

If your headaches don't respond to migraine treatments, this may be an important clue that you're dealing with pressure headaches rather than migraines.

💬 Talking to Your Doctor

If your neurologist suggests migraine treatment, consider discussing:

  • The pressure-like quality of your headaches
  • Position dependency (worse lying flat)
  • Daily occurrence vs. episodic attacks
  • Any visual symptoms beyond typical migraine aura
  • Lack of response to previous migraine treatments
  • Whether intracranial pressure should be evaluated

When to Seek Immediate Help

🚨 Emergency Warning Signs

  • Sudden, severe headache - "Thunderclap" headache unlike any before
  • Vision loss - Sudden or progressive loss of vision
  • Confusion or altered consciousness
  • Fever with headache - Could indicate infection
  • Seizures
  • Weakness or numbness - Especially on one side

Tracking Your Headaches

Keeping a headache diary can help your healthcare team understand your patterns:

What to Track:

  • Time of day - When headaches start and stop
  • Pain level - Rate 1-10
  • Location - Where exactly it hurts
  • Triggers - What you were doing when it started
  • Relief measures - What helped or didn't help
  • Associated symptoms - Vision changes, nausea, etc.
  • Medications taken - Type, dose, and effectiveness

Coping Strategies

🛏️ Position Management

  • Elevate head of bed 30-45 degrees
  • Use extra pillows or wedge pillow
  • Avoid lying completely flat
  • Take breaks from bending over

🧘 Relaxation Techniques

  • Deep breathing exercises
  • Progressive muscle relaxation
  • Meditation or mindfulness
  • Gentle neck stretches

🌡️ Environmental Adjustments

  • Dim lights during headaches
  • Reduce screen time
  • Keep room cool
  • Minimize noise

💡 Remember

Every person with IIH experiences headaches differently. What works for one person may not work for another. Work closely with your healthcare team to develop a personalized management plan.