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Explaining IIH to Friends and Family

Involving your support group with what is going on with your health can help lift a huge weight off your shoulders.

Once you have received a diagnosis of IIH, you need to think about how and when to share this news with your loved ones. This life-changing condition will also impact you and your family and friends in many ways (such as emotionally, physically, and financially).

IIH is a complex condition that is difficult to understand even in the medical community. It can feel impossible to put every symptom you are experiencing and how you feel into words. It is also difficult to know exactly what is going to happen in the near future as the course of treatment can fluctuate. It can be overwhelming to have questions being asked that you do not know the answers to and it will take time to make sense of this process.

Allow yourself time to get informed about the condition of IIH. You will not know all of the answers immediately and that is okay.

Once you feel comfortable, you can better explain this condition to your family, friends, and whoever else you feel is important to be a part of this journey. As you involve your support group with what is going on with your health, it can help lift a huge weight off your shoulders. It will also help them be more compassionate and helpful when your symptoms arise.

A good example of why to include people who are close to you is: if you have appointments and testing that need to be scheduled in an urgent manner, involving your co-workers and manager will help them cover your shifts and not penalize you for taking time off unexpectedly. Also, your family and friends can adjust their schedules so that they can be by your side when you need them.

This hub is created for you and your loved ones. We hope you find this site a place to obtain trusted information, meet others with IIH, and connect with providers who can help. Sign up on Join The Hub at the bottom of this webpage to receive a monthly newsletter and to stay informed.

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  2. Kupersmith M, Gamell, L, Turbin R, et. al. Effects of weight loss on the course of idiopathic intracranial hypertension in women. Neurology. 1998;50(4):1094-1098.
  3. Ochner C, Tsaqi A, Kushner R, et al. Treating obesity seriously: when recommendations for lifestyle change confront biological adaptations. The Lancet Diabetes & Endocrinology. February 11, 2015;3(4): 232-234. https://www.thelancet.com/journals/landia/article/PIIS2213-8587(15)00009-1/fulltext
  4. Subramanian S, Fletcher W Obesity and Weight Loss in Idiopathic Intracranial Hypertension: A Narrative Review. Journal of Neuro-Ophthalmology. June 2017;37(2):197-205. doi:10.1097/wno.0000000000000
  5. Jacob D, Khan S. How Do Loop Diuretics Work? Rx List. Reviewed October 14, 2021. Accessed June 1, 2022. https://www.rxlist.com/diuretics_loop/drug-class.htm
  6. Spitze A, Lam P, Al-Zubidi N, et al. Controversies: Optic nerve sheath fenestration versus shunt placement for the treatment of idiopathic intracranial hypertension. Indian journal of ophthalmology. October 2014;62(10):1015-1-21. 
  7. Patsalides A. AE-054 The river trial: A prospective single arm trial of stenting the transverse sigmoid sinuses with the river stent in patients with idiopathic intracranial hypertension resistant to medical therapy. Journal of NeuroInterventional Surgery. July 26, 2021;13:A92.
  8. Daggubati K, Liu K. Intracranial Venous Sinus Stenting: A Review of Idiopathic Intracranial Hypertension and Expanding Indications. Cureus. February 4, 2019;11(2):e4008. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6450594/#:~:text=Venous%20sinus%20stenting%20is%20an,pressure%20without%20an%20identifiable%20source 

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