Support Hayley’s Battle With Pseudotumor Cerebri

Hi, for those that don’t know me, my name is Hayley. It’s taken me a long time to write this story and ask for help, truthfully I should have a long time ago, because frankly, I am embarrassed, but I’ve come to realize that none of this is my fault. I’m sorry for my lengthy story in advance.

In February of 2024 I graduated from RN school, and my career was just starting. Unfortunately, just around the same time, I got diagnosed with Crohn’s disease after living 6 years with symptoms, and instead of attending my graduation ceremony, I got my first infusion of a biologic. I spent my first months as a nurse juggling being a patient and being a nurse. Luckily, the biologic started working for me, and I was starting to get better, and I was finally hopeful that I was going to be able to live my life as normal.

Then in November 2024, I woke up one day in excruciating pain in my neck. I couldn’t lift my arms over my head to even change my shirt. Over the next few days, this pain got more severe and persisted into something more, including a severe migraine that never went away, blurry vision, pulsating tinnitus, nausea, vomiting, and random dizziness and fainting spells. I was told at first that this was just a herniated disc and since I was so young I just needed steroids and physical therapy and I would be good as new. As you can imagine, this did not help, and my symptoms only got more severe, and working became very hard. I got sent home from work several times for vomiting in front of patients (when one of my spells comes on it’s very sudden and I have no time to make a run for it) or fainting. Eventually, after months of begging, I got an MRI, and there was a finding concerning for idiopathic intracranial hypertension, which is also known as pseudotumor cerebri. Pseudotumor cerebri basically means I have all the symptoms of a brain tumor without actually having a brain tumor. The pressure in my head continues to build up with no known cause, so without a cause, it is really hard to treat. There’s nothing to do but treat the symptoms. I have a lot of fluid behind my eyes that continues to build up that may result in me losing my vision. I’ve had 20/20 vision my whole life and only wore glasses while driving at night to now having to wear glasses every second of my life because I cannot see otherwise. As you can imagine, this has resulted in a loss of income for me and increased expenses. I have FMLA which has protected my job, but since I can work intermittently, I don’t qualify for any type of short or long term disability pay and my PTO is long gone. My medical procedures such as MRIs and lumbar puncture and eye testing and copays has required me to pay out of pocket up front. I’m humbly asking for any help but also realize we are all going through it right now. Thank you if you read this far, and if you can’t help, even just a share is so appreciated. Thank you.