(NEW YORK) — When KatieRose Hamilton has a headache, she can’t just take an aspirin and lie down. Instead her headaches, which are related to a condition called trigeminal neuralgia, leave her incapacitated, unable to do anything but lie down in a darkened room, barely able to move.
KatieRose’s mother, Megan Hamilton, said when her daughter is suffering from these intense headaches, there is nothing they can do for her.
“When she has attacks, it is sobbing, kicking her feet, moaning, begging God to make it stop,” Hamilton told ABC News. “It’s awful. As her parent, I would lay there and sob beside her.”
KatieRose suffers from a disorder called trigeminal neuralgia (TN), which affects the cranial nerve called the trigeminal and leads to intense, sometimes burning, or stabbing pain. The trigeminal nerve is one of the most widely distributed nerves in the head and these painful episodes can last for hours, according to the National Institute of Neurological Disorders and Stroke.
Usually the pain is caused by some kind of artery or vein compressing the nerve as it pulses. Eventually the pulsing can damage the nerve leading to intense pain.
Trigeminal neuralgia can be so painful for patients that it has been nicknamed the “suicide disease” for driving people to suicide in search of relief. The disease usually affects people over 50 and usually women.
“You know those thick kitchen knives? It feels like someone is stabbing that in the side of my head for like two to three hours and there’s nothing you can do,” KatieRose told ABC News affiliate KABC-TV.
According to the National Institute of Neurological Disorders and Stroke, the disorder strikes 12 per 100,000 people per year.
To find relief, the Hamiltons have tried everything from medication to brain surgery.
While some anti-seizure medications have helped keep the worst of the pain at bay, they have left KatieRose with “brain fog,” unable to sometimes do simple math problems or read a sentence.
Additionally, doctors say they won’t help her permanently, since her body would become accustomed to them and they would need to increase her dosage.
On Tuesday, KatieRose underwent brain surgery to help relieve the pain at the medical center at the University of California Irvine. It’s her second brain surgery in two years.
A previous procedure at the Johns Hopkins Medical Center helped to relieve her pain, but only for eight months.
“It came back and hit her like a freight train,” said Hamilton. “The attacks were up to three hours long. We were absolutely crushed because we thought we beat it.”
This time Hamilton said her daughter is more cautious about her recovery.
Hamilton recalled that the day after her surgery her daughter told her surgeon, “Thank you very much for doing my surgery. If it won’t work, I won’t hold it against you.”
Hamilton said that KatieRose’s doctors have theorized that the veins compressing her nerves have always been there. However, they believe it took years for the pulsing veins to wear away the myelin coating on the outside of the nerve.
“It’s like an un-insulated wire and it starts firing when it shouldn’t be,” said Hamilton of the cranial nerve.
Hamilton said that during the latest surgery the surgeon found at least 10 compressions — both veins and one artery — on her cranial nerves, any one of which could be causing her intense episodes of pain.
Before KatieRose was medicated, Hamilton said that her daughter had an episode every 12 to 48 hours.
Hamilton said she is more hopeful about her daughter’s condition after the surgery, but that there is no guarantee how long the surgery will keep the headaches away.
The surgery is considered successful if it stops the pain for six to 10 years. Hamilton said she knows someone who has been without pain for 23 years and others who had pain come back after just a few months or years.
“We will wind up waiting to see for the rest of her life what’s going to happen,” said Hamilton. “What we hope is that the surgery keeps her pain-free and medication-free for a long time and in the meantime they can find a cure.”
Copyright 2014 ABC News Radio
Dana Ford, CNN Newswire
Jennifer Graham, Deseret News