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Suspect IIH? What to Ask Your Doctor

If you believe you or your loved one may have idiopathic intracranial hypertension (IIH), the first step is to ask the right questions to your doctor or provider.

As the name states, idiopathic means “unknown cause” and because it is a rare disease, you may not get all of the answers you long for at your initial visit. At this point in your healthcare journey, it is important to focus on the what instead of the why. Obtain answers from trusted sources on what can be done to diagnose, alleviate symptoms, and treat IIH.

You can advocate for yourself by opening up lines of communication with your provider to express your concern. Some helpful questions to ask are:

  • What tests can be performed to confirm the diagnosis of IIH? Lab tests, imaging tests, and referrals to other specialists (neurologist, neuro-ophthalmologist)
  • What other areas of my body can be affected by the disorder? For example in IIH, eyesight is likely affected.
  • Is there anything that can be done on my end to mitigate this disease process?
  • What treatment options are available for IIH?
  • Are there any curative options for this condition?
  • I have other health conditions, could they be contributing to this disorder? For example, certain medications such as steroids, cyclines, retinoids, and vitamin A are associated with causing an increase in intracranial pressure.

The above are great initial questions to ask but should be tailored to each individual. The answers you receive will provide insight into your next steps. As some of these questions are answered, more may arise. Some of these questions may need to be readdressed as the causes for IIH are discovered and improved treatment options become available in the near future.

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