Life With Idiopathic Intracranial Hypertension (2026)

Pseudotumor Cerebri/Idiopathic Intracranial Hypertension information

Idiopathic intracranial hypertension (IIH), sometimes called by the older names benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC), is a neurological disorder that is characterized by increased intracranial pressure (pressure around the brain) in the absence of a tumor or other diseases. The main symptoms are headache, nausea, and vomiting, as well as pulsatile tinnitus (sounds perceived in the ears, with the sound occurring in the same rhythm as the pulse), double vision and other visual symptoms. IH is diagnosed with a brain scan (to rule out other causes) and a lumbar puncture; lumbar puncture may also provide temporary and sometimes permanent relief from the symptoms. Some respond to medication (with the drug acetazolamide), but others require surgery to relieve the pressure. The condition may occur in all age groups, but is most common in young women, especially those with obesity. Secondary Intracranial Hypertension information

Causes:

Intracranial hypertension was first documented in the sixteenth century by a Dutch explorer, Gerrit de Veer, who identified the toxic effects of polar bear liver on early Artic explorers. Several men in his expedition developed secondary intracranial hypertension (SIH) and nearly died after consuming polar bear liver, which contains lethal levels of Vitamin A. Excessive ingestion of vitamin A is now a recognized SIH cause. Other examples of SIH causes include:

• Head trauma (including post-traumatic brain injury (TBI) )
• Stroke (subarachnoid hemorrhage )
• Cerebral blood clots (dural venous thrombosis)
• Kidney failure
• Liver failure
• Sleep apnea

• Drugs associated with IH:

o Tetracycline
o Minocycline
o Isotretinoin (Accutane)
o All-trans retinoic acid (used in the treatment of promyelocytic leukemia)
o Excessive ingestion of Vitamin A (hypervitaminosis A)
o Amiodarone
o Nitofurantoin
o Lithium
o Levonorgestral (Norplant)
o Growth hormone treatments
o Steroid withdrawal

• Underlying infectious diseases:
o Meningitis (bacterial or viral)
o Lyme disease
o Human immunodeficiency virus (HIV)
o Poliomyelitis
o Coxsackie B viral encephalitis
o Guillain-Barre syndrome
o Infectious mononucleosis
o Syphilis
o Malaria

• Other underlying diseases:
o Lupus
o Sarcoidosis
o Hypoparathyroidism
o Addison’s disease
o Behcet disease

More SIH causes are thought to exist, but research is needed to confirm whether there are true relationships. Both idiopathic and secondary intracranial hypertension can cause the same physical symptoms of raised intracranial pressure and can become chronic; the main difference between the two forms is the presence of a cause. We asked our followers to send us some descriptions of their IIH symptoms and feelings towards those symptoms. We selected five to include. " there is a leprechaun in my brain with a hammer and an ice pick his sole purpose is to reach the pot of gold located at the bottom of my neck so he hammers away all day to get past the maze that is my brain.. every-time he gets close the witch that has cursed us both sends him back in further .... He has to start hammering away all over again... he never reaches the gold and my pain never ends "

" Sometimes it's like my head, neck, and upper back is on fire. Sometimes it feels like my head is in a vice grip and someone is tightening up. My eyes feel swollen and burn. "

" Imagine your head feels as though it's been crushed by a vice, a headache unlike anything you've ever felt before, where every part of your head hurts and the pressure is unbearable, and it's a pain no-one can see. Imagine a world in permanent soft focus, where things come in twos, where things disappear momentarily, where you can't tell how deep a step is, where bright light is a pain you can't stand. Imagine a world that sways around you, where you feel as though you're in the middle of a storm on a cross channel ferry, feeling dizzy and sick - yet you're standing still. Imagine you're so totally exhausted that your body doesn't want to move and all you want to do is sleep, yet an incessant roaring in your ears keeps you awake. Imagine feeling lost and fearful, confused in a place you used to know well. Welcome to the world of IIH "

" I constantly feel like my eyes are being pushed out of their sockets. The pressure build up causes a stabbing pain between my shoulder blades and every movement causes various sparkles, skips and blurs in my visual field. On really bad days it's like an ice-pick behind one or both eyes. Sometimes my facial nerves are impaired and it looks like I'm having a stroke. Prior to my stent it constantly sounded like a UFO had landed in my head with the constant "whoosh, whooosh, whoosh" to the beat of my heartbeat. I've begged for spinal taps... not something I'd have thought I'd ever do. "

" Head is in a vice, being tightened all day, blurred vision, stabbing pains in the eyes, memory loss, confusion, frustration, aggitation. hearing only noise while someone is talking to you. knowing what you want to say but you can't put the words together. having to wear dark glasses on a dull day because your eyes hurt. having to put a lamp on before it goes dark because you can't bear the brightness. not being able to do the simplest of things. can't go out on your own because you can't trust your own mind. dodging traffic because you don't see well enough to that car coming. I could go on but I won't "

Feel free to ask any questions that you would like. No question is a stupid question. We try to have fun, yet ICP is and can be a very serious condition. We all have our own opinion on things, so if you disagree with someones comment, kindly state your side. DISCLAIMER:
The information on this page is meant to be for educational purposes only and is in no way to be taken to be or substituted for the provision or practice of medical, nursing or professional healthcare advice, help, diagnosis, services or treatment. The information should not be considered complete and should not be used in place of a visit, call, consultation or advice of your physician or other health care provider. Should you have any health care-related questions, please call or see your physician or health care provider

Sources: http://en.wikipedia.org/wiki/Idiopathic_intracranial_hypertension
http://www.ihrfoundation.org/intracranial/hypertension/info/C17/

We are not affiliated with any other Intracranial Hypertension awareness Pages on Facebook. Our private group is Life With IIH. facebook.com/groups/lifewithiih

03/03/2026

I think my shunt has failed again. If it has, this will be revision #48 for me and surgery #63. Thank goodness I have Paisley Works And Plays to help me get through it.

02/03/2026

01/03/2026

High vs. Low Intracranial Pressure: Understanding the Overlaps and Key Differences
One of the most confusing aspects of cerebrospinal fluid (CSF) disorders is how high intracranial pressure (like in Idiopathic Intracranial Hypertension - IIH) and low intracranial pressure (like in spontaneous intracranial hypotension from a CSF leak) can feel surprisingly similar — yet they are opposites on the pressure spectrum. This overlap often leads to misdiagnosis or delayed care, especially in connective tissue disorders like EDS where both can occur (sometimes even switching or co-existing).
Both conditions disrupt CSF dynamics, causing debilitating headaches and neurological symptoms. But the positional clues, associated signs, and long-term risks help distinguish them.
Shared/Overlapping Symptoms
Many symptoms appear in both high and low pressure states due to traction on pain-sensitive structures, venous changes, or brain displacement:
• Headache (often severe and daily; can worsen with Valsalva maneuvers like coughing, straining, bending over, or exercise)
• Neck pain or stiffness
• Nausea and vomiting
• Dizziness or vertigo
• Tinnitus (ringing in ears; pulsatile in high pressure, sometimes non-pulsatile in low)
• Blurred or double vision / visual disturbances
• Brain fog, fatigue, cognitive issues
• Photophobia or phonophobia
• Nocturnal awakening from pain
These overlaps explain why some patients bounce between “high” and “low” diagnoses or experience rebound high pressure after treating a leak.

Important Note: In some patients (especially with underlying connective tissue issues), chronic high pressure can lead to skull base erosion and secondary CSF leaks — causing a shift to low-pressure symptoms or a “mixed” picture. After patching a leak, rebound high pressure (temporary IIH-like symptoms) is common.
Diagnosis often requires lumbar puncture (opening pressure measurement), MRI/MRV for signs like empty sella or venous stenosis (high), or brain sagging/dural enhancement (low), plus careful history of positional changes.
If you’re dealing with these symptoms, tracking what makes your headache better/worse (lying down vs. standing, time of day) can be a huge clue. Advocate for specialists in CSF disorders — early recognition protects vision and quality of life.
You’re not alone in this confusing overlap. Awareness helps!
💙 Share if this resonates. Tag a friend or warrior.

28/02/2026

Living with IIH: More Than “Just a Headache” – The Hidden Devastation of Idiopathic Intracranial Hypertension
If you’ve ever heard someone say “It’s just high pressure in your head,” they’ve never truly lived with Idiopathic Intracranial Hypertension (IIH).
This invisible neurological condition turns everyday life into a constant battle. The pressure inside the skull builds without a tumor or other obvious cause, crushing the optic nerves and flooding the body with symptoms that are far from “mild.”
The Daily Reality of IIH Symptoms
Imagine waking up every single day to:
• Debilitating headaches that feel like your skull is being squeezed in a vice — often worse with any movement, coughing, or even bending over.
• Pulsatile tinnitus — a relentless whooshing or heartbeat sound in your ears that never stops.
• Vision chaos: fleeting blackouts (transient visual obscurations), blurred or double vision, blind spots, and the terrifying fear that today might be the day your peripheral vision starts fading for good.
• Nausea, dizziness, neck and shoulder pain, extreme fatigue, and brain fog so thick you can’t remember simple conversations or finish a sentence.
These aren’t occasional annoyances. For many, they are relentless, unpredictable, and completely disabling. One minute you’re trying to function; the next you’re curled up in a dark room praying for relief.
The Long-Term Toll on the Body
If left untreated or poorly managed, IIH doesn’t just go away. The increased pressure can permanently damage the optic nerves, leading to irreversible vision loss or even blindness in a small but devastating percentage of cases. Chronic headaches often become lifelong. Cognitive function can decline — memory lapses, concentration struggles, and executive dysfunction make simple tasks feel impossible. Many develop secondary issues like depression, anxiety, and overwhelming fatigue that compound the physical damage.
IIH is not life-threatening in the traditional sense, but it steals quality of life in ways most people never see.
How IIH Shatters Jobs, Relationships, and Futures
• Careers: Countless people with IIH have had to quit jobs they loved. Teachers, nurses, office workers — the unpredictability, vision issues, and crushing pain make it impossible to show up reliably or perform safely. Sick leave piles up, promotions disappear, and financial stress mounts.
• Relationships: The isolation is crushing. You cancel plans at the last minute because a sudden wave of symptoms hits. Friends drift away because they don’t understand why you “look fine” but can’t leave the house. Partners become caregivers, and the emotional weight strains even the strongest marriages. Many describe feeling like a burden.
• Mental Health & Daily Life: The constant fight against invisible symptoms breeds anxiety and depression. Simple joys — driving, reading, playing with kids, going out for dinner — become high-risk or impossible. Families rearrange their entire lives around your symptoms. The financial burden of medications, doctor visits, and lost income adds another layer of exhaustion.
This is the reality for thousands living with IIH every single day.
Early diagnosis and treatment (weight management where appropriate, medications, procedures, and multidisciplinary care) can protect vision and improve symptoms for many — but the condition can still be chronic, relapsing, and life-altering.
If this sounds familiar, you are NOT alone.
IIH may be rare, but its impact is enormous. Raising awareness saves sight and changes lives.
💙 Share this post if you know someone fighting IIH.
💙 Tag a warrior or caregiver.
💙 Demand better recognition — because “just a headache” is never just a headache.
Together we can make the invisible visible.

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