Idiopathic Intracranial Hypertension Without Papilledema in a Transgender Woman With HIV: A Case Report and Review of Risk Factors

Idiopathic intracranial hypertension (IIH) is a disorder characterized by elevated intracranial pressure (ICP) in the absence of intracranial mass lesions, hydrocephalus, or infection. The condition most commonly presents with headache and papilledema; however, idiopathic intracranial hypertension without papilledema (IIHWOP) is increasingly recognized as a clinically important variant that may lead to diagnostic delay and progressive visual impairment. Established risk factors include obesity, female sex, and hormonal influences, while IIH in people living with HIV remains uncommon. We report a rare case of IIHWOP in a transgender woman with HIV receiving bictegravir/emtricitabine/tenofovir alafenamide (Biktarvy) and estrogen therapy. A 34-year-old transgender woman with well-controlled HIV, assigned male at birth, presented with six months of progressive bilateral peripheral visual field loss accompanied by chronic headache, nausea, dizziness, and diplopia. Neurologic examination revealed severe visual field constriction without papilledema. Neuroimaging demonstrated findings suggestive of chronically elevated ICP, including prominent Meckel’s caves and mild flattening of the superior pituitary margin, without evidence of mass lesions or venous sinus thrombosis. Lumbar puncture revealed a markedly elevated opening pressure of 53 cm H₂O with otherwise normal cerebrospinal fluid composition. Infectious, inflammatory, and neoplastic etiologies were excluded. The patient was diagnosed with IIHWOP and treated with acetazolamide, with plans for close neuro-ophthalmologic follow-up. This case underscores the importance of considering IIH variants in patients with progressive visual symptoms despite a normal funduscopic examination. The potential contributions of antiretroviral therapy, estrogen use, obesity, and psychosocial stressors warrant further investigation.

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Publication Details

Journal
Cureus
Published
2026-03-12
DOI
https://doi.org/10.7759/cureus.105116
Primary Topic
Cerebral Venous Sinus Thrombosis
Type
article
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article

Idiopathic Intracranial Hypertension Without Papilledema in a Transgender Woman With HIV: A Case Report and Review of Risk Factors

Shon Shmushkevich, Peter Hsin, Lorena Bonilla, Susana P Garcia et al.
Cureus
Cerebral Venous Sinus Thrombosis
article

Idiopathic Intracranial Hypertension Without Papilledema in a Transgender Woman With HIV: A Case Report and Review of Risk Factors

Shon Shmushkevich, Peter Hsin, Lorena Bonilla, Susana P Garcia, Magalys L Suarez
article en

Abstract

Idiopathic intracranial hypertension (IIH) is a disorder characterized by elevated intracranial pressure (ICP) in the absence of intracranial mass lesions, hydrocephalus, or infection. The condition most commonly presents with headache and papilledema; however, idiopathic intracranial hypertension without papilledema (IIHWOP) is increasingly recognized as a clinically important variant that may lead to diagnostic delay and progressive visual impairment. Established risk factors include obesity, female sex, and hormonal influences, while IIH in people living with HIV remains uncommon. We report a rare case of IIHWOP in a transgender woman with HIV receiving bictegravir/emtricitabine/tenofovir alafenamide (Biktarvy) and estrogen therapy. A 34-year-old transgender woman with well-controlled HIV, assigned male at birth, presented with six months of progressive bilateral peripheral visual field loss accompanied by chronic headache, nausea, dizziness, and diplopia. Neurologic examination revealed severe visual field constriction without papilledema. Neuroimaging demonstrated findings suggestive of chronically elevated ICP, including prominent Meckel’s caves and mild flattening of the superior pituitary margin, without evidence of mass lesions or venous sinus thrombosis. Lumbar puncture revealed a markedly elevated opening pressure of 53 cm H₂O with otherwise normal cerebrospinal fluid composition. Infectious, inflammatory, and neoplastic etiologies were excluded. The patient was diagnosed with IIHWOP and treated with acetazolamide, with plans for close neuro-ophthalmologic follow-up. This case underscores the importance of considering IIH variants in patients with progressive visual symptoms despite a normal funduscopic examination. The potential contributions of antiretroviral therapy, estrogen use, obesity, and psychosocial stressors warrant further investigation.

Cureus
Good health and well-being, Gender equality
Openalex Percentile: Top 32%
Cerebral Venous Sinus Thrombosis
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