A photo of podcast guest Tracey, who discusses central diabetes insipidus

In 2005 Tracey was in a car crash that completely changed her life. She immediately developed slurred speech and an ice-pick headache right through the center of her brain. At the emergency room she was diagnosed with a concussion and sent home, but things only got worse from there. She developed aphasia and ataxia, falling constantly from balance issues and discovering that the words in her mind were not matching the words she would speak out loud. As if this weren’t strange enough, she also started urinating constantly. It became impossible to stay hydrated, as Tracey was urinating upwards of 16 liters per day.

After years of suffering and being ignored by doctor after doctor, Tracey took it upon herself to research the cause of her disabling symptoms. Her research led her to central diabetes insipidus (CDI), a form of diabetes that affects water regulation rather than blood sugar. When the hypothalamus at the back of the pituitary gland is injured, it can disrupt the production of a vasopressin (also called antidiuretic hormone), which regulates water balance and blood pressure. Although this is a known risk factor for brain surgeries, new research is linking the condition to head trauma. There may be millions of people suffering from transient or permanent diabetes insipidus without their knowledge. Tracey was close to death by the time she finally convinced a doctor to administer a water deprivation test which proved her condition.

In this episode of the Major Pain podcast, Tracey talks us through her remarkable journey. Once she was finally diagnosed, a simple nasal spray treated her diabetes insipidus. The first time she tried the nasal spray, it felt like her brain was a dried up sea sponge finally exposed to water. Her ice-pick headache and slurred speech were gone within 20 seconds. Tracey is now applying her regained strength and energy to raising awareness of diabetes insipidus, so others won’t have to suffer the medical negligence and ignorance she endured.

Read Tracey’s story on the NORD website: https://rarediseases.org/rare-resilience-traceys-story-in-honor-of-rare-disease-day/

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Stimpunks Creator Badge

This episode of Major Pain is supported by a creator grant from the Stimpunks Foundation. This is a nonprofit organization providing mutual aid and human-centered learning for neurodivergent and disabled people. Check them out online at https://stimpunks.org/


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