16 Aug 2021

Hope for headache sufferers

From Afternoons, 3:10 pm on 16 August 2021

When your head is pounding it can be hard to appreciate but there's never been a better time in history to have a headache, argues digital science writer Tom Zeller.

Finally, people are putting money and time into figuring out why a billion people worldwide suffer from regular headaches, he wrote in the New York Times recently.

Zeller, who is the editor of the digital science magazine Undark, suffers from what's known as 'cluster headaches'.

headache man boy

Photo: Rendy Novantino / Unsplash

Migraines and cluster headaches are neurobiological disorders, which even the World Health Organisation has recognised to be "as disabling as dementia or being quadriplegic", Zeller tells Jesse Mulligan.

Although it's not the brain itself experiencing pain, he explains.

"You can look at someone having a severe migraine or cluster attack and they don't have a stake being driven through their head, although the brain is telling the person that that is very similar to what they're feeling.

"So why that's happening is a bit of a mystery and we do tend to believe that it's happening within the meninges, which is the layer of tissue between the brain and the skull.

"But we don't know what sets off that cycle of pain signalling."

Throughout the first century of modern medicine, headaches were not taken seriously, largely because women, who suffered from them more frequently, were misdiagnosed or had their concerns brushed off, Zeller says.

"It was to all of our detriment."

There is a "total disconnect" between funding for research into this area and the number of people suffering from migraines, at least in the US, he says.

"There are a lot of people who will argue that that's still a function of stigma.

"Even setting aside the gender issues, it's an invisible disease ... So I think a lot of that stigma trickles all the way up to funding levels for our basic science."

The American opioid epidemic has also likely made it harder for those suffering chronic pain to get emergency treatment, he says.

"A lot of migraine suffers, because they do get inadequate treatment, are forced to go to the emergency room for help.

"The pain has just become absolutely intolerable, nothing that they've been prescribed works, and so they'll get an infusion of morphine or something to stop that headache so that they can function.

"They do often get treated as drug-seeking individuals, and sometimes are refused medication because of that, and so in that setting, I do think that the opioid crisis may be influencing how emergency rooms respond to headache sufferers."

Reactions to Zeller's article There Has Never Been a Better Time to Have a Headache have been both "heartening and depressing", he says.

"There was a true outpouring ... I really was sort of taken aback by the upswell and the outpouring of personal stories.

"And not just from patients, although there were quite a lot of those, also people emailing me directly to share their personal experience or the experience of a loved one, to share ways that they've in ad hoc ways tried to manage these headaches."

Zeller wants to give fellow headache sufferers some hope by highlighting the research and potential treatments being trialled now.

"It's a result of that research that has unfolded over four decades that we've arrived at several new classes of drugs that target neurotransmitters in the brain that are involved in pain signalling and try to interrupt that.

"These are entirely new classes of drugs and the first ever [approved] in the United States [that target the prevention of migraines].

"So all up until 2018, believe it or not, there was not a single drug on the market that had been designed to treat a migraine headache ... that's what I mean when I say it's probably never been a better time to have a headache."

Some of these drugs have been life-changing for people whose whole day can be wiped out by a chronic headache, Zeller says.

However, he admits they don't work for everyone.

"There are side effects that aren't ideal and we really just haven't gotten to a solution from one of these most disabling afflictions known to humankind.

"But they seem to have given hope and also injected some enthusiasm in the pharmaceutical industry to continue researching this area.

"There is some work now being done to try to identify which patients are likely to respond to these therapies. But we're still far away from anything that's even remotely universal or finding some fundamental trigger that's common to everyone."

A clinical trial at Yale University is also testing psilocybin to treat cluster headaches. There are other therapies people explore as well such as vagus nerve stimulators or Cefaly devices.

To people who suffer from chronic headaches but feel unheard by their doctor, Zeller recommends connecting with an online advocacy community that can help you learn to negotiate.

"I would also say just don't lose hope. You are definitely not alone."