Help a single mum get a diagnosis for a suspected CSF leak

Hi, my name is Endaywa, and I’m reaching out for help with something I never thought I’d need to do.

18 months ago, my life changed in an instant. After turning my head quickly one day, I was hit with a sudden, severe pain in my head, chest, and back with 1 sided paralysis. Since then, I’ve been mostly bed-bound. I can’t sit or stand upright without intense pressure and pain. The only relief I get is when I’m lying completely flat with ice packs all over my head.

Since that moment, I’ve developed a long list of strange and painful symptoms: a constant headache that burns, stabbing chest and back pain, ride sided paralysis, numbness in my face and i have lost my sense of smell. I also experience internal, constant dizziness (which worsens when I turn my neck), episodes that resemble absent seizures and tremors. None of this has been properly explained—and despite all of it, I’ve been left without answers.

I was first told it was a “cluster migraine” — a diagnosis that doesn’t officially exist. I’ve tried the strongest medications available for migraine, including CGRP inhibitors, with no relief. I know my body, and I’m not a migraine sufferer. But instead of looking further, I’ve been passed around from neurology to cardiology to pain clinics, without anyone taking ownership of my case.

One neurologist from a charity finally listened and believes I may have a spinal cerebrospinal fluid (CSF) leak—a condition where the protective fluid around the brain and spinal cord leaks out, causing constant, disabling symptoms. But the NHS won’t authorise the imaging I need to confirm it. I’ve already had an MRI without contrast in 2023, and a difficult lumbar puncture 7 months ago, but neither gave the full picture. What I really need is a contrast MRI or CT myelogram, which could finally show the site of the leak and open the door to treatment.

I’m a single parent, and the hardest part of all this is not being able to be there for my child in the way I could. I miss the old me. I want to live and not just survive. I just want a chance to get better—but I can’t do it without help.

I’m trying to raise £2,600 to afford private testing that the NHS won’t provide. Every pound will go toward the scans and consultations that could finally lead to a diagnosis and treatment.

If you can donate, share this page, or even just send kind words—I’d be so grateful. Thank you for taking the time to read my story.

With love and hope,