Idiopathic Intracranial Hypertension

WHAT YOU NEED TO KNOW

What Is Idiopathic Intracranial Hypertension?

Idiopathic Intracranial Hypertension (IIH) is a condition where pressure builds up around your brain due to excess cerebrospinal fluid (CSF). Think of it like a sink where the drain isn’t working properly – if the CSF can’t drain properly, pressure builds up.

The main symptoms include:

  • Headaches
  • Vision changes
  • Sometimes nausea and hearing changes

Important Facts About IIH

What Causes It?

The truth is, we don’t know what causes IIH – that’s what “idiopathic” means. While doctors often blame weight, the science doesn’t support this:

  • IIH affects people of all sizes
  • The old theory about abdominal fat pressing on blood vessels and restricting blood flow out of the brain has been disproven
  • Some research suggests the condition itself might contribute to weight changes, not the other way around
  • There are many theories about possible causes (like hormones, metabolism, inflammation) but all the changes they blame on weight could just as easily be caused by weight stigma, weight cycling, and chronic stress

Treatment Options

Effective treatments for IIH exist that don’t rely on weight loss. These include:

  • Medications like acetazolamide
  • Regular monitoring of vision
  • Proper headache management
  • Treatment of any underlying conditions

What About Weight Loss as Treatment?

Despite what you might have been told, the evidence for weight loss as a treatment for IIH is surprisingly weak:

  • Most studies show no clear link between weight loss and improved vision or headache
  • The only stuy that did show an improvement only followed 20 people for three months after putting them on a 425kcal diet for three months (only one fifth of the faily energy required for the average human)
  • The Headache improvements reported in this study were minimal (only about 10% reduction in severity)
  • Medications like acetazolamide have been shown to improve symptoms regardless of weight changes

How Weight Stigma Affects Your Care

Weight stigma in healthcare can have serious consequences for IIH patients:

  • Effective treatments may be delayed or denied while focusing on weight loss
  • You might be pressured into dangerous very-low-calorie diets
  • The stress of forced weight loss attempts could potentially make your symptoms worse
  • Important symptoms might be dismissed or blamed on weight
  • Vision problems might progress while waiting for weight loss to “work”

Weight Inclusive Treatment

Your Rights as a Patient

You deserve healthcare that:

  • Treats your symptoms effectively
  • Doesn’t delay proper treatment by focusing only on weight loss
  • Considers all available treatment options
  • Respects you and takes your concerns seriously

Getting Good Care

If your doctor is only focusing on weight loss:

  1. Refuse consent to discuss your weight or weight loss during the consultation
  2. Ask about all your options, including medications like acetazolamide
  3. Request regular vision monitoring
  4. Ask for proper headache management
  5. Seek a second opinion if needed

 

Remember: You have the right to evidence-based treatment that addresses your actual symptoms, not just advice about weight loss.

Effective Sample Script

You can use this script with healthcare providers:

“I am aware of the association between IIH and higher weight. I have done my research regarding the benefits and risks of intentional weight loss for my condition. I have decided that I do not wish to pursue this avenue. I therefore do not consent to discussing my weight or weight loss during this or any future consultation. Any attempts to do so will only serve to stigmatize me further.”

This information is provided by Dr. Asher Larmie, The Fat Doctor. For more detailed information and resources, check out his masterclass.