My name is Tara Rowe. I am an Idaho historian, a writer and an advocateTo self-advocate in your health is to communicate your needs for people with disabilities.
My IIH story began in January 2010 when I sought out my optometristA trained medical profession who can examine, diagnose, and treat a majority of eye disorders. after having routine sinus-like headaches. An eye exam revealed papilledemaSwelling of the optic nerve that carries visual signals from the eye to the brain. and severe peripheral vision loss which was quickly diagnosed as pseudotumor cerebri (a term we never use anymore, but was still common then). After an MRI, lumbar punctureA procedure where a needle is placed in the lower part of the spine (the lumbar spine) to access cerebrospinal fluid. and following up with an ophthalmologistA specialist in the branch of medicine concerned with the study and treatment of disorders and diseases of the eye., my treatment plan came together quickly. After an unfortunate allergic reaction to acetazolamideMedication used to treat glaucoma, epilepsy, altitude sickness, periodic paralysis, idiopathic intracranial hypertension, urine alkalinization, and heart failure., we found that furosemide worked well to decrease the swelling of the optic nerve and the horrendous headaches I was experiencing. It took nearly three years for the peripheral vision to rebound. After thirteen years of advocating for myself in a healthcare system that was too often unaware of IIH, I can say that my IIH is now managed with medication. There is still evidence of the disease (occasional headaches and pulsatile tinnitusA whooshing or throbbing noise heard in one or both ears that can range from annoying to debilitating. Highly associated with venous sinus stenosis.), but I control it rather than it controlling me.
What I have learned from this long journey with IIH is that knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case. I have also learned the hard way that what you put into your body matters! After my diagnosis, I learned that the long string of corticosteroids I had taken after a back injury and surgery in 2008 in conjunction with steroid-related weight gain likely caused my condition. A continued struggle with chronic pain has not changed the fact that I need steroids at times, but I have found ways to manage weight gain when I do need the meds and I keep much closer track of how frequently I use them.
