Idiopathic intracranial hypertension is on the rise, finds study

A new study has found a brain pressure disorder called idiopathic intracranial hypertension is on the rise, and the increase corresponds with rising obesity rates. The study is published in the January 20, 2021, online issue of Neurology®, the medical journal of the American Academy of Neurology. The study also found that for women, socioeconomic factors like income, education and housing may play a role in their risk.

Idiopathic intracranial hypertension is when the pressure in the fluid surrounding the brain rises. It can mimic the symptoms of a brain tumor, causing chronic, disabling headaches, vision problems and in rare cases, vision loss. It is most often diagnosed in women of childbearing age. Treatment is often weight loss. In some cases, surgery may be required.

The considerable increase in idiopathic intracranial hypertension we found may be due to many factors but likely mostly due to rising obesity rates. What is more surprising from our research is that women who experience poverty or other socioeconomic disadvantages may also have an increased risk independent of obesity."

William Owen Pickrell, Ph.D., M.R.C.P., Study Author, Swansea University, Wales, United Kingdom and a Member of the American Academy of Neurology

For the study, researchers used a national healthcare database in Wales to analyze 35 million patient years of data over a 15-year period, between 2003 and 2017. They identified 1,765 people with idiopathic intracranial hypertension during that time. Of the group, 85% were women. Researchers recorded body mass index measurements for study participants. Body mass index is calculated by dividing weight by height. For every one person with the disorder, researchers compared three people without it who were matched for gender, age and socioeconomic status.

The socioeconomic status of each person with the disorder was determined by where they live, using a national scoring system that considers factors like income, employment, health, education and access to services. People in the study were then divided into five groups ranging from those with the fewest socioeconomic advantages to those with the most.

Overall, researchers found a six-fold increase in the number of cases of the disorder over the course of the study. In 2003, for every 100,000 people, 12 were living with the disorder, compared to 76 people in 2017. Also, in 2013, for every 100,000 people, two were diagnosed during that year, compared to eight people in 2017.

Researchers found that the increasing number of people living with the disorder corresponded to rising obesity rates in Wales during the study, with 29% of the population being obese in 2003 compared to 40% in 2017.

"The worldwide prevalence of obesity nearly tripled between 1975 and 2016, so while our research looked specifically at people in Wales, our results may also have global relevance," said Pickrell.

There were strong links for both men and women between body mass index and risk of the disorder. For women, there were 180 cases per 100,000 people during the study for those with high body mass index compared to 13 women with a body mass index considered to be ideal. For men, there were 21 cases per 100,000 among those with a high body mass index compared to eight cases for those with an ideal body mass index.

Researchers also found that for women only, socioeconomic factors were linked to risk. There were 452 women in the group with the fewest socioeconomic advantages compared to 197 in the group with the most. The women in the group with the fewest had a 1.5 times greater risk of developing the disorder than women in the group with the most, even after adjusting for body mass index.

"Of the five socioeconomic groups of our study participants, women in the lowest two groups made up more than half of the female participants in the study," said Pickrell. "More research is needed to determine which socioeconomic factors such as diet, pollution, smoking or stress may play a role in increasing a woman's risk of developing this disorder."

A limitation of the study was that researchers identified the socioeconomic status of participants by the regions in which they lived instead of obtaining individual socioeconomic information for each participant.

Journal reference:

Miah, L., et al. (2021) Incidence, Prevalence and Healthcare Outcomes in Idiopathic Intracranial Hypertension: A Population Study. Neurology.


  1. Jennifer Knodle Jennifer Knodle United States says:

    Additional limitations of this study could be several factors. Providers are becoming more aware or possibly more willing to recognize this disorder.   I personally have this disorder and have had this disorder for 10 years. As a medical professional, I diagnosed myself through symptoms 10 years ago, however, it took 5 consultations and refusal of multiple providers to acknowledge the possibility and order the needed diagnostic test of lumbar puncture, because I was not overweight. I ultimately had a massive seizure and even then saw an 3 additional providers perplexed by the seizures and cognitive symptoms one who with whom I did not discuss my suspicions finally diagnosed the condition.   Not all who suffer with this are overweight. Also, this is a chicken or the egg dilemma for multiple reasons. First, I was an avid exerciser, I ate quite a healthy diet, and came from a middle class home, yet could never hit weight loss targets due to fluid issues, which at the time I did not understand had any relation to my headaches.  
    I have met many people on my journey and continue to help and refer patients to the one provider who has been helpful to me. All of these patients are similar to me. Though the correlations are noteworthy, correlation and causation are not the same. I respectfully disagree with the findings and believe that if the neurologists spent more time listening to all that the patients have tried, They may see that the patients who do lose weight often do not see resolution of their symptoms though they may experience intermittent remission.  The IIH is a symptom, one that I suspect will eventually drop the “idiopathic” just as it dropped the “benign”.

    • Hamda AL Naimi Hamda AL Naimi United States says:

      Hello! I too was misdiagnosed because I was not overweight.. and I continue to tell my doctors that this is a symptom of something but sadly, they continue to call it "idiopathic". Thank you for your comment!!!

  2. So That's It So That's It United States says:

    This is a typical analysis and by far not a parameter.
    Try joining a FB group for IIH sufferers and then notice its not Obesity that causes it.

    Were MRVs done?  Where CT or CTA scans to check Venous compression?  Psychological exams for those with long term bracing and pressure?

    Ask WHY is CSF pooling?  Why is it not draining?  It's not Obesity - then anyone obese should have IH.

    • Vicki Copeland Vicki Copeland Australia says:

      So many variables. Could the IIH and the obesity be symptoms of a cause? Id love to see stats on how many diagnosed with IIH also have one or more MTHFR mutations and are there consistent patterns. Also what links pineal cysts (when do they inhibit free flow of CSF) with IHH (query histamine? inflammation?) Is there a connection between this and an increase in new Daily Persistent Headache syndrome? So many questions.

  3. D Blair D Blair United States says:

    I agree with the comments. I've been living with this for 3 year now and I was literally ignored by my primary care for over a year before diagnosis (by seeing specialists on my own). My daughter had 4 ER visits prior to being diagnosed or taken seriously. More than half of the US is overweight, so it's difficult to think that this is the main factor in this disorder. If so, why are so many non overweight patients suffering as well as men who are not overweight. Also, when patients with IIH lose weight why does the symptoms not go away completely instead of sometimes going into remission as it does when you are overweight. It is also, frustrating when every neurologist says you need to lose weight (as the first thing out of their mouths instead of focusing on treating the symptoms more importantly massive headaches. If the medical community would focus more on finding the cause of this disorder and how to treat it,we all would have a better quality of life.

The opinions expressed here are the views of the writer and do not necessarily reflect the views and opinions of News Medical.
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