Michelle is unsure when her journey with idiopathic intracranial hypertension (IIH) began. She started experiencing chronic migraines and pulsatile tinnitus in her 20s, which may have been the first sign. However, a freak accident in which a man fell from a theater balcony onto Michelle in 2017 intensified her symptoms, leading to an IIH diagnosis in 2019.
Intracranial hypertension is characterized by pressure inside the skull caused by a buildup of cerebrospinal fluid around the brain. Although there are many reasons this can happen such as a blood clot or infection, Michelle has the idiopathic form meaning there is no confirmed cause for her condition. Symptoms include headache, twitching, temporary blindness, absent seizures, fatigue, brain fog, memory loss, and papilledema (optic nerve swelling).
In 2017, Michelle attended a play at her local theater. She decided to stay in her seat during intermission, during which a man fell 30 feet from the balcony above. He landed on the left side of Michelle’s head and shoulder, breaking the metal chair beneath them. After this incident Michelle began experiencing visual disturbances, so she went to have her eyes checked. She was told her optic nerve was swollen and sent to the ER. During a spinal tap the opening pressure of her spinal cord was measured and it was very high, leading to her diagnosis with IIH.
In this episode of the Major Pain podcast, Michelle tells us about the incredible accident that worsened her disease, the diagnostic process, and how she manages IIH. Recently her situation was complicated by a Crohn’s disease diagnosis, requiring changes to her diet that are contrary to the diet recommended for IIH. To vent frustration while also building community around chronic illness, Michelle launched the IIHWarriors platform. She creates content on TikTok and runs an Etsy store, for which all proceeds go to IIH research at Johns Hopkins University.
IIHWarriors Linktree: https://linktr.ee/IIHWarriors
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast