My Story – Living With Two of the Most Excruciating Pain Conditions Known to Medicine

I was originally referred to neurosurgery hoping to finally receive a surgery date for Trigeminal Neuralgia — one of the most agonising pain conditions known. Instead, after further assessment, I received an additional diagnosis: Paroxysmal Hemicrania, another rare and devastating neurological disorder that causes violent, repeated attacks of one-sided facial pain.

Both conditions are described in medical literature as some of the most excruciating pains a human being can experience. When an attack hits, my pain reaches a 12/10 — beyond anything words can explain.

What These Conditions Are

Atypical Trigeminal Neuralgia (ATN)

• Chronic disorder affecting the trigeminal nerve

• Causes constant burning, aching, stabbing, and electric-shock sensations

• Hypersensitive to touch, cold, movement, or even a light breeze

• Often resistant to all available medications

• Considered one of the most devastating pain conditions

Paroxysmal Hemicrania

• Rare trigeminal autonomic cephalalgia

• Causes sudden, severe stabbing attacks on one side of the face or head

• Attacks can happen repeatedly throughout the day

• Pain intensity is comparable to cluster headaches — sometimes called “suicide-level pain” due to severity

How This Impacts My Life

I can barely leave my home.

A light breeze or cold air on my face can instantly trigger an attack.

Everyday tasks — talking, brushing my teeth, eating — can set off unbearable pain.

I now also experience seizures, and I am admitted to hospital multiple times every week because of the severity of these attacks.

I have tried every medication available in the UK, including all first-line and alternative treatments. I am unresponsive to them all.

Why I Am Asking for Help

I attended neurosurgery expecting to discuss a surgical plan, but due to my new diagnosis, I am no longer being considered for surgery in the UK. My only proposed option here is lifelong medication — medications that I have already tried and failed.

I have effectively been told that there is nothing more they can offer me.

The Mayo Clinic in Rochester, Minnesota and the Cleveland Clinic in Cleveland, Ohio are two of the only hospitals in the world specialising in complex facial pain surgery and advanced treatment for these conditions. They have the surgeons, technology, and experience that I simply cannot access here. This surgery is my only real chance of reclaiming my life — to be a mother again, to leave the house without agony, to exist without constant fear of the next attack.

Costs

The estimated cost of surgery alone is around £40,000.

However, the total cost will be higher once you include:

• Flights to the USA

• Accommodation (Airbnb or short-term rental for 1+ month)

• Living expenses while abroad

• Transport to and from the hospital for appointments

• Follow-up care

• Potential complications or extended hospital stay

A rough estimate for 1 month in the USA (flights + Airbnb + basic living costs) is £2,000–3,000, depending on your location, travel, and lifestyle.

I do not expect anyone to fund everything for me.

I will find a way to raise the full amount over time.

But anything you can help with — no matter how small — is immensely appreciated.

I didn’t want to have to ask for help.

I didn’t want to have to start a fundraiser.

But I am now at a point where I can’t continue living like this.

Please consider sharing this, being kind, and helping me take one step closer to getting my life back.

Thank you for reading, supporting, and caring.

Love always, Gab