In 2017, I graduated from the Radiology program but during that time I was having very bad headaches. I was a student, mother of 4 and a wife so I consumed a lot of coffee during those 2 years.

One day I was driving and I experienced what’s called a blackout. My vision went out for a few seconds. I went to the doctor and I was told that I may have strained my eyes during school. So I was told to see an eye doctor. I went to the eye doctor and my optic nerves were swollen really bad. I was immediately sent out for an MRI. I was diagnosed from that point. I was prescribed diamox to help decrease the fluid and caffeine pills.

Those medications made me very sick. In the beginning I was vomiting often, confined to the bed. My symptoms got worse so I had my very first lumbar puncture where my levels were very high. The fluid was drained and a few days later my pressure increased again. Of course I had another lumbar puncture. I had an intracranial angiogram and a Stent was placed in the left side of my vessels because they were narrowing.

My symptoms were still increasing so in Aug of 2018, I had a Ventricular Peritoneal (VP) Shunt placed in the back of my head. After surgery I had some relief but my VP shunt malfunctioned so in 2019, I had a Lumbar Shunt placed in my lower back. There were a few complications because now I have both shunts so I had to have a valve placed on my right side to find the median between both shunts. I experience migraines daily, some days are better than others. I’ve learned to live with them. It hurts when I cough, dizziness, bending over weakness and muscle pain. I’m working with my neurologist and being tested for Chiari Malformation.

I've been going through all of the treatments and medications. From Botox injections (36 needle sticks around my head), Migraine injections (Ajovy, ), Ketamine infusion(hospitalized for 3 days). I’ve had about 12 lumbar punctures total. I’ve taken every medication that I was given but most of them makes me feel worse. I was diagnosed with Trigeminal Neuralgia which adds on to everything. I still am sensitive to light and suffer from poor peripheral vision. I wear ear plugs a lot because I’m also sensitive to loud noise.When the migraines increase I go in a dark room, put on ear plugs and light a candle to relax. I try to be as normal as possible.

When someone asks how I’m doing I always say that “I’m ok”. Since this is a neurological disorder people can’t see what I’m going through. I created this foundation to bring awareness to this rare condition. To allow others to learn and share their stories. As someone living with IIH sometimes it’s great to know that you’re not alone and to be heard and definitely not to get sympathy from others. I’m not 100% health wise but if I can help others then I feel my mission is being accomplished. Thanks for allowing me to share my IIH story

Tanya Ward
 (Founder/ IIH Champ)