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

On the 1st December 2023, my life changed in an instant. After turning my head quickly one day, I was hit with a sudden, severe pain on the right side of my head, chest, and back with 1 sided paralysis. Since then, I’ve been mostly bed and house 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 on my head and neck.

Since that moment, I’ve developed a long list of strange and painful symptoms: a constant severe pressure headache that burns when upright, neck pressure, right sided paralysis, numbness and burning in my face. I also experience internal, constant dizziness (which worsens when I turn my neck), episodes that resemble absent seizures and tremors. I feel like i am under water when moving my neck and have periods where i cannot hear or swallow and feel my pulse in my ear. None of this has been properly explained—and despite all of it, I’ve been left without answers. I spend 90% of my day lying down to cope with my symptoms - even breathing is draining.

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 and nerve block injections, with no relief. I know this is not a migraine as this has never been something i have suffered with. But instead of looking further, I’ve been passed around from neurology to cardiology to pain clinics, without anyone taking ownership of my case.

In Feb 2025 i finally thought i was making progress as a 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 yet again the neurology team ignored the request for urgent testing made by this lovely Dr. Neurology has now discharged me as "nothing is helping", but i believe it is because i complained.

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. My son misses 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,