Living with IIH

Hi! So this is incredibly hard for me to ask, but my family and I need some help. In April of 2023, I was diagnosed with a rare neurological disease, called idiopathic intracranial hypertension (IIH). A description of it can be found further down. This disease caused me to be out of work for a few months. It caused over $4000 in medical bills and over $2000 of unexpected credit card bills, because I wasn’t working. We are struggling, and now asking for help. I’m still very sick, trying to find the right course of treatment. My vision is affected tremendously, I suffer from migraines about 5-6 days a week, and at this point we are barely making it through. I’m almost out of sick time at work, so I’ll be losing money for more doctors appointments soon, and we just need all the help we can get. Please don’t hesitate to reach out with any questions. What is IIH? It’s a condition that affects 1/100,000 people per year and mimics the symptoms of a brain tumor without being there, due to over reproduction of CSF, putting pressure on brain. I’m working with my doctors to find the right course of treatment.