Ashley Hattle: the torture of cluster headaches

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Posted Sat, Mar 24, 2018

Ashley Hattle holds the first copy of her book, “Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man” which was published on Sep. 8, 2017. [Photo: Courtesy of Ashley Hattle]

The road of a journalist is often filled with excitement and adventure, given the ability to travel and listen to the stories of many people from all walks of life. Ashley Hattle said it best, “We have a responsibility to share the truth and that, in itself, is moving.”

Hattle graduated from MSU Denver in 2014 with a Bachelor of Arts degree in journalism. She enjoyed some firsthand experience while traveling to Steamboat, Colorado, Washington, D.C., and Santa Fe, New Mexico, for her social documentary courses.

“Soak up all of the information you can,” Hattle said. “And stay in contact with your professors and the journalism department. These connections will help you more than you know. Journalism isn’t a career choice, but something within that drives you to share stories with the world.”

Hattle is now a Michigan-based medical writer specializing in cluster headaches and writes for plastic surgeons, orthodontists, ophthalmologists and personal injury lawyers. She is also affiliated with Clusterbusters, Inc., a nonprofit organization dedicated to finding effective treatment for CH through research and education. This came after she was plagued with her own nightmare of episodic CH starting in 2007.

Front cover of Ashley Hattle’s book, “Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man.” [Photo: Courtesy of Ashley Hattle]

Cluster headaches are not migraines. According to Hattle, they’re a form of Trigeminal Autonomic Cephalalgia that is closer to non-convulsive epilepsy than a headache. These attacks affect one side of the head and comes on quickly, reaching their peak at an average of 8.9 minutes.

“It feels like the pronged side of the hammer is stabbing your temple repeatedly for anywhere from 15 minutes to three hours,” Hattle said. “They come with one-sided autonomic symptoms which looks like a stroke: a drooping eyelid or ptosis, runny or stuffy nostril, tearing eye or lacrimation, facial flushing/sweating, pupil constriction and eye redness.”

Deeper Look at CH

Hattle described CH as a neurological disorder which affects one in a thousand people, often misdiagnosed as migraines even though the symptoms and behaviors are different. A migraine patient typically prefers a dark, quiet room whereas a cluster patient can’t sit still.

Hattle said, “As Bob Wold, president of Clusterbusters, puts it, ‘It’s like when you slam your finger in the car door, you have to shake your hand to distract from the pain. Patients pace, hit their head, scream, cry, rock back-and-forth and would prefer a loud rock concert to a quiet room.’”

Ashley Hattle using high-flow oxygen, which she believes is the most effective method to control her cluster headache. [Photo: Courtesy of Ashley Hattle]

Hattle said CH attacks typically occur at the same time each day, especially at night. The cause of the condition is unknown, but the hypothalamus, sphenopalatine ganglion and trigeminal nerve are activated during an attack. The hypothalamus regulates circadian rhythms such as seasons of the year, times of day and sleep.

Hattle’s CH starts about every six months, an onslaught of attacks lasting about two weeks around 6 a.m. or 1 p.m., depending on the cycle. In May of 2012, Hattle was sick for 35 days, and this number only increased in November. This occurred when she was looking forward to studying abroad in Costa Rica with hopes to graduate by 2013. Instead, CH had other plans.

“Somewhere in there, I found a doctor who finally prescribed me oxygen to treat the attacks,” Hattle said. “Bless his heart, he recognized that he didn’t know everything, which is very hard for doctors to do and researched cluster headaches. However, he didn’t prescribe it correctly. Cluster headaches are best treated with high-flow oxygen of 12-15 lpm or up to 25 lpm, so I continued to struggle and canceled Costa Rica, not once but twice.”

In January of 2014, Hattle finally got a referral to a neurologist who confirmed her diagnosis and sent her to Dr. Judy Lane in Denver. At that point, fed up with getting the runaround and wanting to understand more about her condition, Hattle bought three books off Amazon, only to discover that “two mentioned CH in just one paragraph, and the other was so poorly thrown together that I realized I and others like me deserved better.”

Informative Book on CH

Hattle took matters into her own hands and wrote the book herself. In September 2014, Hattle traveled to Nashville to interview patients and their family at the 9th Annual Clusterbusters Conference. Her book “Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man” was published on Sept. 8, 2017.

Bob Wold, president and founder of Clusterbusters, presents Ashley Hattle with the 2017 award for “Exceptional Education in Cluster Headache.” [Photo: Courtesy of Ashley Hattle]

“My book is technically a textbook, but it’s a new take on it,” Hattle said. “It uses actual quotes from patients, their families and neurologists to form a complete view of what it’s like to live with cluster headaches. The fact that patients can read the words of others just like them is what makes it such a powerful resource.”

Hattle’s book has a chapter for every aspect of the condition from what an attack feels like to the pathophysiology of CH, and how they differ from other headache disorders. Hattle said there’s a chapter on overcoming PTSD and suicidal thoughts, how to support a loved one with cluster headaches and the available treatments that are both preventive and abortive.

Several of the people Hattle interviewed brought her to tears. When she held a book signing at Chicago’s Clusterbusters Conference in 2017, she met a woman who had lost her daughter to CH. Hattle said this neurological disorder is nicknamed “suicide headaches,” because the condition is considered one of the most insidious pain a human being can experience.

“The risk of suicide, it’s real,” cinematographer Tyler Mann said. “And it happens in our community way more than in the general population.”

Mann is the director of a documentary called “Clusterheads” and is someone who knows CH all too well. Hattle met Mann at a Clusterbusters conference about three years ago, having in common the nightmare of CH. Mann described his as, “Pure unadulterated agony. If a normal headache is like stubbing your pinky toe on your coffee table, then a cluster headache is like sawing your leg off at the knee with a rusty saw with no anesthesia.”

Ashley Hattle with her mother, Linda McGrath (left), receiving her Bachelor of Arts in journalism at MSU Denver in 2014. [Photo: Courtesy of Ashley Hattle]

There are two types of CH, episodic and chronic. Mann said episodics don’t get them all the time, occuring only certain times of the year for a few weeks or months at a time. However, chronic sufferers rarely get any relief and usually have them daily. Both Mann and Hattle have episodic CH. Mann gets them three months out of the year, usually during the spring, but it can happen in the fall as well.

Solutions

High-flow oxygen is Hattle’s favorite method for relief, as it’s believed to have a vasoconstrictive effect, or it dampens down on the parasympathetic activation that causes the tearing eye.

Hattle said, “Using one of two breathing techniques through a non-rebreather oxygen mask can abort an attack within 15 minutes, and knocking the liter flow down to 5 lpm and using a nasal cannula for 20 minutes after that can prolong the length between the attacks.”

Other than high-flow oxygen, Hattle discussed the benefits psilocybin mushroom and lysergic acid diethylamide can have, both containing compounds with the ability to prevent attacks even in the most intractable patients. She explained there’s currently a study going on at Yale, and Harvard did one about 10 years ago, in which they found out that psilocybin and LSD work on the same receptors as medications such as sumatriptan. Hattle hopes these compounds will be legalized for medical purposes soon.

Mann agrees. “Oxygen works to stop or abate a headache for most people, but it doesn’t stop the headaches from happening in the first place. The only treatment I know that can prevent them from ever starting is psychedelic triptans. They are my treatment of choice, and I’ve been 99 percent pain-free for almost three years.”

More importantly, Hattle overcame CH when she decided it wouldn’t rule her life. Despite her struggles, Hattle succeeded through college and starting a new career. Her degree and continued communication with professors helped her obtain the necessary tools to write her book, landing her first full-time writing job.

“You can only allow yourself to be a victim for so long,” she said. “I found validation and support in other patients. Research for the book helped me identify what’s going on in my brain during an attack.”

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Kavann Tok

About Kavann Tok

Kavann Tok is a freelance Denver-area journalist. Website: https://issuu.com/kavanntok

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