Short answer · Medically reviewed summary · Last updated: 2026-04-07

Intracranial Hypertension, often referred to as Pseudotumor Cerebri, occurs when pressure inside the skull rises without an obvious tumor or infection, though the exact underlying cause remains unknown for most patients. While the condition is frequently idiopathic (of unknown origin), research suggests it involves complex interactions between cerebrospinal fluid production, venous drainage, and systemic metabolic factors. What are the primary causes of Intracranial Hypertension? In the majority of cases, Intracranial Hypertension is classified as "idiopathic," meaning the root cause is not fully understood by the medical community.

22 people with Intracranial Hypertension have shared their first-person experience on this question at DiseaseMaps.

10

Which are the causes of Intracranial Hypertension?

Causes of Intracranial Hypertension explained: genetic and environmental factors, reviewed against medical sources, plus patient perspectives.

Intracranial Hypertension causes

Intracranial Hypertension, often referred to as Pseudotumor Cerebri, occurs when pressure inside the skull rises without an obvious tumor or infection, though the exact underlying cause remains unknown for most patients. While the condition is frequently idiopathic (of unknown origin), research suggests it involves complex interactions between cerebrospinal fluid production, venous drainage, and systemic metabolic factors.



What are the primary causes of Intracranial Hypertension?


In the majority of cases, Intracranial Hypertension is classified as "idiopathic," meaning the root cause is not fully understood by the medical community. However, researchers believe the condition arises when there is an imbalance in the dynamics of cerebrospinal fluid (CSF). Think of the skull like a closed container filled with fluid; if the fluid is produced too quickly, absorbed too slowly, or if the veins draining blood from the brain are narrowed (venous sinus stenosis), the pressure rises. This pressure can compress the optic nerves, leading to the vision loss often associated with Intracranial Hypertension.



Are there genetic factors linked to Intracranial Hypertension?


While Intracranial Hypertension is not typically considered a classic hereditary disease, there is growing evidence that genetic predisposition may play a role in some families. Current research is exploring whether specific genetic variants influence how the body regulates CSF pressure or how the venous system develops. Unlike conditions with a clear Mendelian inheritance pattern, Intracranial Hypertension likely involves a complex interplay of multiple genes, making it a focus of ongoing genomic studies rather than a condition linked to a single, known mutation.



What is the difference between a cause and a risk factor?


It is important to distinguish between the direct mechanism of the disease and associated risk factors. A "cause" would be the specific biological trigger for the pressure spike, whereas "risk factors" are conditions that make a person more susceptible to developing Intracranial Hypertension. Common risk factors identified in clinical literature include:



  • Obesity, which is strongly associated with the condition, particularly in women of childbearing age.

  • Use of certain medications, such as tetracycline antibiotics, growth hormones, or excess vitamin A.

  • Endocrine disorders, including polycystic ovary syndrome (PCOS) or thyroid dysfunction.

  • Venous sinus stenosis, which is a narrowing of the large veins in the brain that may act as both a risk factor and a potential perpetuating cause.



Is the etiology of Intracranial Hypertension fully understood?


The etiology of Intracranial Hypertension is still a subject of intense medical research. Currently, scientists are moving away from the idea that it is caused by "too much fluid" alone. Newer research suggests that the condition may be a systemic disorder involving metabolic changes or inflammatory processes that alter the brain's environment. With over 2,580 members in the DiseaseMaps.org community sharing their lived experiences, patient data is helping researchers identify patterns that may lead to breakthroughs in understanding why Intracranial Hypertension affects some individuals and not others.



Next steps



  • Consult a neurologist or neuro-ophthalmologist to monitor your optic nerve health and intracranial pressure.

  • Maintain a detailed symptom diary to track headache frequency and visual changes for your next clinical visit.

  • Join the Intracranial Hypertension community at DiseaseMaps.org to connect with others and stay updated on the latest research.

  • Discuss potential medication reviews with your doctor if you are currently taking substances known to influence intracranial pressure.



Medical disclaimer: This information is for educational purposes only and does not constitute professional medical advice, diagnosis, or treatment; always seek the advice of your physician or other qualified health provider with any questions regarding a medical condition.



References



  • National Institutes of Health (NIH) Genetic and Rare Diseases Information Center (GARD): Intracranial Hypertension.

  • Orphanet: Idiopathic Intracranial Hypertension.

  • Online Mendelian Inheritance in Man (OMIM): Pseudotumor Cerebri.

  • PubMed/National Library of Medicine: Current clinical research on cerebrospinal fluid dynamics.

Medical disclaimer: This information does not substitute professional medical advice. Always consult your doctor before making health decisions.
Source: DiseaseMaps.org
23 answers
Only cause that may be contributed is birth control so far

Posted Feb 21, 2017 by Kate 1052
Myth-obesity. Over production of CSF Fluid with an unknown cause

Posted Feb 21, 2017 by Colleen 1000
There are no known causes for Idiopathic Intracranial Hypertension, hence the word 'idiopathic' which simply means a condition or disease that arises with no known cause. There is also Secondary Intracranial Hypertension which means that the cause for pressure increase in the skull is a form of head trauma. It mostly occurs in patients who have been in car accidents etc.

There is a clear link to IIH and being overweight, however this is NOT a cause. It means that IIH usually occurs when women are of child-bearing age and are overweight. There are some cases where a person is of a healthy weight and still has IIH. On the other hand, there are some people who find losing weight relieves their symptoms and they often go into remission but each person and how they react to this condition is different. What may work for someone else, may not work for you.

There are things that can spontaneously and oddly 'set' this condition off. As a person with IIH myself, I find that things like stress, the weather, humidity and things like bending over can cause a headache/migraine. With me, bending over to tie my shoe laces for example, makes me feel like my head is underwater and I usually have an off balance weird moment which is hard to explain.

So there are no known causes for this condition unfortunately but our bodies tell us what they like and what they don't like. There are a range of treatments to losing weight, to medication, to shunts and stents. There is no cure so we have to figure it out. Our bodies give us signals, we just have to listen.

Posted Feb 21, 2017 by livvdeluca 350
In most cases IH is idiopathic. Sometimes a head injury or other neurological diseases can be the cause.

Posted Feb 21, 2017 by Deirdra 1000
They say weight and s a factor but many have proven that untrue. Many who were on birth control were later diagnosed. When I was diagnosed I also had spinal menengitus for the second time in my life , not sure if there is a connection

Posted Feb 21, 2017 by Bloomingbeauti 1102
Chronic intracranial hypertension has many, many potential causes. Some sufferers have no obvious known cause - this is known as Idiopathic Intracranial Hypertension.
Other causes include autoimmune diseases, Lyme disease, a blood clot on the brain, hydrocephalus, an intracranial mass & chiari malformation

Posted Feb 21, 2017 by Amy 1495
At this time it is unknown which makes this disease an incurable one at the moment.

Posted Feb 22, 2017 by Diane 1053
Unknown etiology. No alternative explanation of symptoms.

Intracranial pressure may be increased due to medications such as high dosis of Vitamin A, long term tetracycline antibiotics or hormonal contraceptives.

Posted Feb 22, 2017 by Alet 1002
There are no particular known causes, but it has been linked to hormones and birth control

Posted Feb 24, 2017 by Maryssa 2100
It is till now idiopathic.
But some causes aggravates it..like being obese, using OCP (oral contraceptive pills),
Treatment for acne

Posted May 18, 2017 by Dr.M 701
Some cause of intracranial hypertension are traumatic brain injury, while idiopathic intracranial hypertension has no known cause. Idiopathic-means "unknown ".

There are some who believe stenosis or narrowing of the venous transverse sinuses in the brain is the cause of idiopathic intracranial hypertension and thus makes it secondary intracranial hypertension.

Posted Aug 12, 2017 by Christy 850
Weight, birth control, hereditary?(maybe)

Posted Aug 13, 2017 by LaurynPatterson 1750
Some Drs say middle aged woman of child bearing age and who are overweight are more predisposed to this condition

Posted Aug 15, 2017 by Mommy2Five 1500
They don't know the cause

Posted Aug 15, 2017 by Lynne 1600
There are many speculations of what the causes are. Genetics, environment,weight, vitamin A overload, birth defect and many secondary reasons as well such as traumatic brain injury, cancer or epilepsy

Posted Aug 18, 2017 by Unique cheatom 2120
No cause is know it is said to be liked with waigt hormones infections sinus problems

Posted Oct 18, 2017 by Sara 2000
overweight, over 30s, infections

Posted Oct 19, 2017 by Julie 2000
hereditary, medication - birth control hormones, antibiotic's, severe head trauma.

Posted Oct 28, 2017 by lisa 3365
It's is idiopathic and unknown to be honest.

Posted Oct 29, 2017 by So 2000
Idiopathic intracranial hypertension has unknown cause/eitiology however research are suggestive of a number of casuative pathways, rather than a singular cause. These include weight, hormones including birth control, neck injury, narrowing of the subdural venous sinuses, adverse pharmaceutical side effects, etc.
Secondary intracranial hypertension can be attributed to a direct cause such as traumatic brain injury, stroke, other medical condition, specific medication, etc.

Posted Feb 18, 2018 by Kelly 2560
There is no known cause for IIH.

Posted Jul 12, 2018 by Michelle 2050
Translated from spanish Improve translation
In the case of our disease is hidiopatica without cause

Posted Jun 7, 2017 by Lo 2000

Intracranial Hypertension causes

Intracranial Hypertension life expectancy

What is the life expectancy of someone with Intracranial Hypertension?

20 answers
Celebrities with Intracranial Hypertension

Celebrities with Intracranial Hypertension

2 answers
Is Intracranial Hypertension hereditary?

Is Intracranial Hypertension hereditary?

13 answers
Is Intracranial Hypertension contagious?

Is Intracranial Hypertension contagious?

14 answers
ICD9 and ICD10 codes of Intracranial Hypertension

ICD10 code of Intracranial Hypertension and ICD9 code

10 answers
Natural treatment of Intracranial Hypertension

Is there any natural treatment for Intracranial Hypertension?

13 answers
Living with Intracranial Hypertension

Living with Intracranial Hypertension. How to live with Intracranial Hypert...

22 answers
Intracranial Hypertension diet

Intracranial Hypertension diet. Is there a diet which improves the quality ...

30 answers

World map of Intracranial Hypertension

Find people with Intracranial Hypertension through the map. Connect with them and share experiences. Join the Intracranial Hypertension community.

Stories of Intracranial Hypertension

INTRACRANIAL HYPERTENSION STORIES
Intracranial Hypertension stories
In July of 2005, I had what I thought was the mother of all Migraines, which I have suffered from since I was 4 years old. I actaully lost my visoin for 2 days! That triggered an Emergency Room visit, where they directed me to a Neurologist for furth...
Intracranial Hypertension stories
_I start having haedache since I was 15 years old but I never pay any attention to it untill I was 25 I was living un kentucky And I when to México for vacations I gain 25 pounds so when I come back to kentucky my headache were worse And I start los...
Intracranial Hypertension stories
Hi, I'm Shellie! I am a former RN, Director of Nursing and Legal Nurse Consultant. In all my 25+ years of nursing, I have never heard of Intracranial hypertension until I was dignosed. Like you, I have to research this little known condition. I am f...
Intracranial Hypertension stories
Hi I am Pam, I am from Wales in the UK.  Back in 1984 I gave birth to my first child, a 9lb6oz son called James.  After about 3 months I started to get headaches, I originally thought they were just due to tiredness and being a new mother, but i wa...
Intracranial Hypertension stories
Diagnosed at 12 at an AVERAGE weight, was not overweight. Allergic to diamox, topamax. Also diagnosed with migraines Now doctors arent even sure I have IIH It was due to an injury (we're assuming from trauma at young age) 3 spinal taps, none of ...

Tell your story and help others

Tell my story

Intracranial Hypertension forum

INTRACRANIAL HYPERTENSION FORUM
Intracranial Hypertension forum
hi everyone. Is anyone here from Wales suffering with intercranial hypertension? 
Intracranial Hypertension forum
Just wanting to know others with IIH.  I had stent surgery in July 2016 to prevent blindness.  
Intracranial Hypertension forum
Has anyone else with this condition lost the ability to smell?  I can only smell really really strong smells.   

Ask a question and get answers from other users.

Ask a question

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map