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Directors interviewWomen 75% of sufferers, leading to 'hysterical' diagnoses

For world’s 1 billion migraine sufferers, COVID a major headache, new film shows

Now streaming, documentary ‘Out of My Head’ on debilitating neurological disease coincides with worsening of condition for many during past year’s pandemic lockdowns

Renee Ghert-Zand is a reporter and feature writer for The Times of Israel.

  • Still from 'Out of My Head': Emma retreats to her darkened room as a migraine descends. (Maya Edelman)
    Still from 'Out of My Head': Emma retreats to her darkened room as a migraine descends. (Maya Edelman)
  • 'Out of My Head' Producer Jacki Ochs (left) and writer/director Susanna Styron (Teri Slotkin)
    'Out of My Head' Producer Jacki Ochs (left) and writer/director Susanna Styron (Teri Slotkin)
  • Still from 'Out of My Head': The filmmaker attempts to comfort her daughter during a migraine. (Maya Edelman)
    Still from 'Out of My Head': The filmmaker attempts to comfort her daughter during a migraine. (Maya Edelman)
  • Illustrative. Headache. (via iStock)
    Illustrative. Headache. (via iStock)

The COVID-19 pandemic has been a huge pain for everyone, and migraine sufferers are no exception. In fact, many have reported more attacks than usual in 2020 of this widespread yet little understood neurological disorder.

Therefore, timing couldn’t be better for the release (by streaming on platforms including Amazon Prime, iTunes, and Google Play, and on DVD) of “Out of My Head,” a documentary film that sets out to educate viewers that migraine is not just a headache.

People with regular migraines have unusually sensitive brains and nervous systems, and generally do best when sticking to regular sleep, eating, exercise and work patterns, say doctors. With fear of the rapid spread of the novel coronavirus SARS-CoV-2 leading to repeated quarantines and lockdowns, life in 2020 has been anything but regular. Such change and stress are common triggers for migraines.

Further complicating things, severe headaches are a common symptom of COVID-19, often making it difficult for migraine sufferers to know whether they have contracted the disease or are just having a migraine. The confusion adds to stress levels, as does the knowledge that infections of any kind can trigger excruciating and prolonged migraines.

“It’s a neurological disease. The perception is that is is just a bad headache syndrome, but it is more than that. It is not life threatening, but people don’t understand how devastating it can be,” Jacki Ochs, the film’s producer, recently told The Times of Israel.

Ochs, 69, teamed up with writer, director and longtime friend Susanna Styron after Styron decided to share her experiences as mother to her daughter Emma, who began suffering from migraines at age 14. Emma’s story, presented mainly through animation, serves as the narrative backbone of the documentary.

“Out of My Head” shows how in addition to severe head pain, migraine involves an array of debilitating and frightening (though mainly transient) neurological symptoms such as aphasia, paralysis and loss of sight . Furthermore, researchers are still not completely certain as to the underlying cause of the disease in the brain.

Still from ‘Out of My Head’: The filmmaker attempts to comfort her daughter during a migraine. (Maya Edelman)

Beyond the science, the affecting film explores migraine from a range of fascinating angles: Personal, social, political, historical, and creative. Viewers learn that for migraine suffers (75% of them female) and their families, the condition is life altering — often for the worse, but sometimes surprisingly for the better.

For example, NYU professor and jazz vocalist and composer Lisa Sokolov developed a vocal improvisation method called Embodied VoiceWork. Originally a means for Sokolov, 66, to use the power of breath to cope with her migraines, she now teaches it in a myriad of settings worldwide, including in Israel.

“I learned to separate the neurological event from the anxiety it causes. I created the required calm through breathing and sounding so that my migraines resolve in minutes, not days,” Sokolov told The Times of Israel.

NYU professor and musician Lisa Sokolov (William Ellis)

After his chronic migraines knocked him out for nearly half a year straight in 2006, Butler University English professor Andrew Levy began exploring the creativity that stems from migraine for some sufferers. Many of the world’s greatest thinkers, writers, and artists, including Thomas Jefferson, Sigmund Freud, Friedrich Nietzsche and Virginia Woolf, were plagued by migraines. In between attacks, their woe often turned to the elevation that led to great works.

Many of the world’s greatest thinkers, writers, and artists, including Thomas Jefferson, Sigmund Freud, Friedrich Nietzsche and Virginia Woolf, were plagued by migraines

Levy, 58, tells their stories, as well as his own, in “A Brain Wider Than the Sky: A Migraine Diary.” In the 2009 book, Levy details how English writer Lewis Carroll is believed to have used his own migraine experiences to fuel the fantastical world in his iconic children’s classic, “Alice in Wonderland.” Many of the bizarre descriptions in the book mirror several of the neurological symptoms caused by migraine. Indeed, for many migraine sufferers, the onset of an attack feels much like falling down a rabbit hole.

Butler University Prof. Andy Levy (Randy Johnson)

“We ourselves went down the rabbit hole — no pun intended — when we discovered the whole world of migraine and creativity. We were fascinated by the whole ‘Alice in Wonderland’ thing, and our research and interviews led us to Klaus Podoll, a senior physician at the Department of Psychiatry and Psychotherapy of the University Hospital Aachen at RWTH Aachen University in Germany, who studies the connection between art and migraine,” Styron said.

For some, a migraine is akin to a religious or metaphysical experience.

“It’s like God just punched you in the side of your face,” Levy says in the film, referring to the physical pain of a migraine, as well as the wake up call it creates, especially for chronic sufferers.

“You rethink everything. You realize how much control you do or don’t have over your life, and it’s an opportunity to rethink how you want to live and what it important,” Levy told The Times of Israel.

Ochs and Styron, 65, discovered that many — including some doctors — don’t take migraines seriously enough, as the suffering of those afflicted is not usually visible to the eye.

“It’s relies on your description and your experience, unlike cancer which is definable and not challenged,” Levy said.

‘Out of My Head’ Producer Jacki Ochs (left) and writer/director Susanna Styron (Teri Slotkin)

It took the filmmakers eight years to complete “Out of My Head,” mainly due to the fact that the film community didn’t find the subject matter “sexy enough,” as Ochs put it.

She and Styron eventually raised cash through a successful Kickstarter campaign, and managed to convince relevant foundations and organizations that had no previous experience funding documentaries that a film could make a major difference in positively shifting the public’s perception of the disease.

According to the filmmakers, the reaction of migraine sufferers to the film has been excellent. More importantly, those with no personal or family connection to the disease have been receptive.

“We even had a neurologist, who is a certified headache specialist, who told us this was the first time she really understood what her patients were going through,” Styron said.

Prof. Rami Burstein (Courtesy)

In recent decades, migraine research is getting more respect in academia. According to Israeli-born migraine specialist Dr. Rami Burstein, this was not the case when he first arrived at Harvard University 25 years ago. Now the John Hedley-Whyte Professor of Anaesthesia and Neuroscience at Harvard Medical School, and the Vice Chairman of Neuroscience in the Department of Anaesthesia, Critical Care and Pain Medicine at Beth Israel Deaconess Medical Center, Burstein recalled a particular lecture he attended.

“I will never forget the lecturer saying that migraine was a psychological disorder associated with hysterical women and that it did not deserve a professorship at Harvard,” Burstein told The Times of Israel.

“I am glad that the social stigma has gone away, at least in the Western world, and that it is recognized as a neurological disorder caused by an abnormally sensitive brain. Fortunately, people — especially women — are more comfortable seeking help so they don’t have to be miserable,” he said.

I will never forget the lecturer saying that migraine was a psychological disorder associated with hysterical women

Migraine manifests differently from one person to the next and can morph in its presentation over time, which is why Burstein calls it a “moving target” and acknowledged the many challenges that remain in helping patients.

Only recently, for the first time in over two decades, a new class of drugs aimed specifically at treating migraine was approved by the FDA. These are calcitonin gene-related peptide (CGRP) inhibitors, which block the effect of a small protein involved in the transmission of pain in a migraine attack. In early 2020, Israel-based Teva Pharmaceutical Industries Ltd. released Ajovy, its version of this preventative treatment.

Still from ‘Out of My Head’: Emma retreats to her darkened room as a migraine descends. (Maya Edelman)

This is good news for those who respond well to this medication, but a considerable percentage of patients have not benefitted. And as Levy points out in the film, for most, the suffering brought on by migraines does not lead to spiritual epiphanies or great artistic inspiration.

As researchers continue to search for a magic bullet, it is interesting to note that remedies recommended by ancient Jewish sages may still be worth a try.

According to Levy’s book, Moses Maimonides, the twelfth-century Jewish philosopher and physician, suggested “‘bread or toast in undiluted wine’ in some cases, a bath ‘in comfortably-warm sweet water’ in others.”

And the Rabbis of the Talmud were fully aware that migraine suffers just want to be left alone in a dark room. The Rabbis “considered social matters and wisely prohibited non-sufferers from visiting or talking to a migraining man or woman,” Levy wrote.

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