At a Glance
- A once-healthy 23-year-old has spent five birthdays lying down after a single seizure
- Rare CSF-venous fistula and connective-tissue disorder keep her horizontal almost all day
- She wed lying on a fainting couch and now shares her story on TikTok
- Why it matters: Her case spotlights an invisible disability that can strike without warning
A sudden thunderclap headache on Thanksgiving Day 2021 turned an active Midwestern woman’s life upside down. Within hours, Meredith-who asked News Of Los Angeles to withhold her last name-suffered a seizure that launched a years-long battle with a spinal-fluid leak so severe she now remains horizontal about 95 percent of her day.
The Night Everything Changed
Meredith, then 23, had felt only unexplained dizziness and head pressure earlier that November. After the holiday seizure, emergency-room staff sent her home to rest. She never bounced back.
“I was taken to the emergency room and was told to go home and rest, but I never got better,” she told News Of Los Angeles. Standing for more than a few minutes triggers pain she calls “unbearable.”
Counting Birthdays in Bed
January 2026 marked her fifth birthday spent bedridden. She grieves not just the life she had-an active young professional-but also the one she expected.
“Every part of my life has been affected. I was young, extremely active and had a career I loved, and I lost all of that almost overnight,” she said. “You mourn the life you had, but you also grieve the life you were supposed to live.”
A Double Diagnosis
In August 2023, nearly two years after relentless migraines and repeated self-advocacy, doctors pinned down two conditions:
- Spinal cerebrospinal fluid (CSF) leak-a hole or tear that lets protective fluid escape
- Intracranial Hypotension Spontaneous-caused by the leak
Meredith’s case is complicated by a CSF-venous fistula: instead of fluid slowly dripping out, it is suctioned straight into a vein and swept away in the bloodstream. The defect is tougher to patch than a standard leak.
Why Treatment Keeps Failing
Sealing one fistula often spawns another. Her underlying connective-tissue disorder, Ehlers-Danlos syndrome (EDS), leaves tissue fragile and prone to new leaks. Imaging is equally tricky:
- Puncturing the spinal canal to hunt the leak risks creating yet another one
- CSF-venous fistulas rarely show up on the first scan; multiple attempts are common
Procedures so far include multiple blood patches and, most recently, a brain stent.
Daily Life Flat on Her Back
Meredith’s routine revolves around horizontal living:
- Eats with her head slightly elevated
- Brushes her teeth in bed
- Gets up only to use the bathroom or bathe
- Friends style her hair while she lies on a massage table
“Even small things like washing my face or making a snack often feel impossible due to the severe pain when upright,” she said. “When your brain is sinking into your skull, pain medications don’t help; the only option is lying flat.”
Hidden Toll Beyond Pain
Because CSF cushions both brain and spine, prolonged leaks can spark body-wide symptoms. Meredith now copes with:
- Severe ear and neurological problems
- Brief visits as her only social contact
- Inability to work
- Additional health complications
“Physically, my body has deteriorated, and I have developed several other health complications along the way,” she said. “Mentally, it is a constant choice to keep fighting through something that is both isolating and incredibly painful.”
Refusing to Let Illness Define Her
Adaptation keeps her going. Favorite moments include:
- Holding napping nephews while lying down
- Visiting an accessible beach where she can recline on the sand
- Finding “little glimpses of normalcy” in modified activities
Her wedding became another exercise in adaptation. Guests gathered at a rented historical home where Meredith exchanged vows while reclining on a fainting couch.
“It was not how I had pictured my wedding, and accepting that reality was painful, but it also taught me to find joy in what I can still experience,” she said.
Support System
Her husband handles daily challenges and keeps hope alive. Family and friends supply steady encouragement, surrounding her with the emotional fuel needed to face each day.
Raising Awareness Online
For three years Meredith has documented her journey on TikTok, aiming to inspire others while spotlighting a condition she calls “unimaginably painful and deeply isolating.”
“By sharing my story, I hope to bring awareness to a condition that is both unimaginably painful and deeply isolating. I want to advocate for more understanding, research, and better treatments for everyone living with this,” she told News Of Los Angeles.
She stresses that disability can happen to anyone, and many disabilities remain invisible. “We don’t always see the struggles someone is facing, which is why it’s so important to take the time to extend understanding rather than judgment.”
Key Takeaways
- A single thunderclap headache and seizure stole Meredith’s ability to stand for more than minutes
- A rare CSF-venous fistula plus Ehlers-Danlos syndrome makes every fix temporary
- She spends 95% of her day horizontal, yet still celebrates modified milestones
- Sharing her story on TikTok, she pushes for research and compassion toward invisible disabilities
