Hi, I’m Caitie Kennedy, also known as Caitie.colors.

I’m a mom to a wonderful three year old, a wife to my best friend, and a national hair educator and stylist. I need your help to get life changing medical care for a rare and debilitating neurological condition called Spontaneous Intracranial Hypotension, also known as SIH.

SIH is rare, extremely difficult to diagnose and even harder to treat, but with the right specialist care it is curable.

My Story

In March of 2024, I began experiencing unusually intense migraines that quickly became debilitating. By June, the pain was unbearable. We tried everything, adjusting medications, diet changes, triptans, and even lifestyle shifts. I lost 80 pounds, yet the migraines persisted.

For nearly a year, I lived in constant pain and uncertainty. Even though some bloodwork came back abnormal, including renin levels that were 1,400 times higher than normal, I was repeatedly told everything looked fine.

In April of 2025, when the pain became truly unmanageable, I went to the ER. I was experiencing thunderclap headache episodes, temporary blindness, sudden hearing loss, sensations that felt like I was having a stroke, and severe vestibular symptoms.

MRI scans suggested that I might have low cerebral spinal fluid, which finally led to a referral to a neurologist who truly listened to me and believed me. Dr. Azeem is my hero in complete honesty. 

Nearly a Year Later

Dr. Azeem and I agreed to throw everything we could at this and reassess if nothing works. But despite our efforts-Instead of improving, my symptoms worsened dramatically.

• Daily head pain

• Constant nausea

• Blurry, double, or distorted vision

• Deafening tinnitus with intermittent hearing loss

• Extreme pressure behind my eyes and ears

• And most frightening of all, cognitive impairment

Recent imaging revealed physical signs of brain sag and abnormal pressure on structures in my skull, along with fluid where it should not be. After reviewing my spinal MRI, specialists now believe the leak may be located in a delicate suboccipital region, a location that requires highly specialized care.

What’s Ahead

I have been referred to Cedar Sinai’s specialized team, where a neurosurgeon will pinpoint the leak and determine the best course of action. This may include epidural blood patching or possibly spinal surgery.

Recovery will involve strict bed rest, flat on my back for several days, followed by weeks of limited activity.

Why I’m Asking for Help

Insurance has covered some costs, but we have already incurred a significant financial burden, with much more ahead. What I cannot afford on my own includes round trip travel to treatment with my husband, extended Airbnb stays near the hospital, travel and living costs during diagnosis, treatment, and recovery, and incidental medical expenses not covered by insurance. I want to start by covering immediate needs for treatment.

This was also the year we planned to move closer to family in Minnesota, but that plan is now on hold until I can recover both physically and financially.

My Heartfelt Wish

All I want is to jump and play with my child without pain, remember my friends’ names, and experience a single normal day again.

I would endure 15 spinal taps if it meant getting my life back.

Thank you more than words can express for your love, support, and generosity. I would never ask unless I truly needed help.

With love,

Caitie Kennedy

@caitie.colors