Migraine Awareness Week 2025: Living With New Daily Persistent Headache (NDPH)

#watercooler #mentalhealth #wellbeing #devhealth

September 22nd to September 28th marks Migraine Awareness Week 2025, a week dedicated to raising awareness about chronic headache conditions.

Dear Dev Community, I know that this isn't developer-focused content, but like the name of this app implies, this is a community. And I think part of the benefits of a community is to share your highs and lows.
Today, I will be sharing a very big low of mine and hoping it reaches the right people and brings comfort to those who would need it.

While migraines are well-known, there's another, lesser-discussed disorder that deserves attention: New Daily Persistent Headache (NDPH).
I've lived with NDPH since 2018 (meaning my head hasn't stoped aching for 7+ years), and this is my story.

How The Headaches Began

In 2018, my life changed suddenly. One day, my head began to ache - and the pain never went away. It wasn't just the constant headache that puzzled me. I was also overwhelmed by intense hunger pangs that seemed impossible to satisfy.
I thought I had an endocrine problem, so I kept visiting specialists. Instead of answers, I got brushed aside. Some doctors accused me of exaggerating, others said I was just seeking attention. Those words hurt deeply, and the lack of support made the condition even harder to bear.
Meanwhile, the hunger took a toll. I gained weight year after year, carrying not only the burden of constant pain but also the visible effects of a body I couldn't control.
The hunger is still there, but I feel that I have grown a lot since 2018, and I am more able to handle and control myself. From my estimate, I have gained about 50–60kg (100–120lbs) since 2018 and the inception of NDPH and the hunger pangs.

The Long Journey to Diagnosis

Over the years, I tried almost everything - painkillers, anti-seizure drugs, blood pressure medication, endless consultations. Nothing helped.
Two years ago, I finally met Professor Enoch, a neurosurgeon who diagnosed me with New Daily Persistent Headache (NDPH). His verdict was blunt: there's no cure, only management.
It was both crushing and liberating. Crushing because there was no solution, liberating because I finally had a name for my condition. I wasn't imagining it.

What Is New Daily Persistent Headache (NDPH)?

NDPH is a rare and stubborn primary headache disorder. Unlike migraines or tension headaches, it starts suddenly and without warning - many people remember the exact day it began - and then it becomes constant.
Key features of NDPH include:
Sudden onset: A headache that begins one day and never goes away.
Duration: Lasts for more than three months with no break.
Symptoms: Can resemble migraines (throbbing pain, sensitivity to light and sound, nausea) or tension headaches (tight, pressing pain).
Causes: Still unclear. It may follow infections, stressful life events, or appear spontaneously.

Unfortunately, NDPH is known for being difficult to treat, and many patients - myself included - go through years of trial and error with little relief.

Misdiagnosis and the Emotional Toll

One of the toughest parts of this journey has been not being believed. Because NDPH is rare, most doctors don't recognise it right away. Instead, patients are bounced from one clinic to another, sometimes treated as if they're making it all up.
This experience leaves scars. The pain itself is exhausting, but the dismissal from medical professionals adds another layer of suffering. For me, that rejection was almost as heavy as the headaches themselves.

Learning to Manage Life With NDPH

Today, I've stopped chasing miracle cures. I'm learning how to live with NDPH, and that shift in mindset has given me some peace.
Here's what's helped me:
Acceptance: Realizing the headache may never fully go away.
Managing hunger: Finding strategies to control the relentless food cravings that come with my condition. I often go on fast periods to show/prove to my body that I, too, can win!
Lifestyle adjustments: Pacing myself, managing stress, and prioritizing rest.
Education and advocacy: Speaking openly about NDPH to raise awareness.

It's not a perfect solution, but it's how I take back some control.

Why Awareness Matters During Migraine Awareness Week

NDPH isn't the same as migraine, but both are life-altering headache disorders that deserve compassion, understanding, and research. By sharing my story during Migraine Awareness Week 2025, I want to remind people:
Chronic headaches are real, and they change lives.
Patients deserve to be listened to, not dismissed.
More research is urgently needed for conditions like NDPH.

Awareness won't cure me, but it can help shift how society responds to people living with invisible pain.

Does NDPH Count as a Disability?

This is a question I often ask myself. On one hand, NDPH doesn't always show up on the outside, so people assume you're fine. But living with daily pain absolutely affects work, social life, and mental health in ways that can be disabling.
Some organisations and countries recognise chronic headache disorders as disabilities, while others don't. For me, the label matters less than the recognition that this condition does make daily living harder. Still, it's an important question for society to wrestle with.

What do you think? Should NDPH be recognised as a disability?

✍️ Written in honour of Migraine Awareness Week 2025, and in hope of sparking conversation around New Daily Persistent Headache.