Dysautonomia Patient Story 01/2020

Hi everyone! Welcome to the second TDP Patient Story blog. For our second case study, we will follow a 34-year-old woman from Ohio. She has been struggling with the symptoms of dysautonomia including postural orthostatic tachycardia syndrome (POTS), and vasovagal syncope or neurocardiogenic syncope progressively throughout her life. This trio is a combination that 30% of dysautonomia patients endure.

This patient, due to these issues, has been forced to use a cane and at times a wheelchair. She rests in permanent disability, due to her symptoms flaring at any moment. Her worst symptoms are GI issues, nausea, vomiting, shortness of breath and discomfort in chest, and polyarthralgia. With her symptoms progressively becoming worse over the years, she takes in large amounts fluids and salt, uses compression garments, achieves good sleep, and takes low dose Naltrexone (to reduce joint pain).

Suffering from these symptoms all her life, doctors had said that her symptoms were “all in her head”. She was diagnosed with seizures, and pseudo seizures. Having a mother who has had similar symptoms, she recognizes the need for education: “So far, there has been no proven genetic link, but maybe there just hasn’t been enough testing”. She and many other patients are relying on the spread of information, and the research to help improve her symptoms and quality of life.

The mission of The Dysautonomia Project is to educate healthcare professionals, patients and communities about dysautonomia. Stay tuned each month for a new case study!

-The Dysautonomia Project Team

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