The Mindful Migraine

In another instalment from the Migraine World Summit, (which is still accessible if you want to watch), Dr Walter Koroshetz, director of neurology disorders (NINDS) in the United Sates, was asked about the future of migraine research.  The interview stretched my pain-brain a tad, and there was a lot of names of American companies and organizations that lost me a bit, but below is the best summary I can make of the half hour interview – hope it helps.

In terms of funding for migraine research, there are two approaches.  Top down, where Congress (the American government) mandates what should be researched.  Currently, dementia for example, is a mandated research subject and funded accordingly.  The other approach is bottom up.  In this instance, curious researchers with a strong hunch (or the highly motivated parents of children with disorders), push for research into specific areas.  They seek out funding from various organisations, and those with the most compelling research strategies achieve grants.  The rest sit on the shelf waiting for funding.  The more curious and motivated people there are out there submitting ‘worthy’ migraine proposals, the greater the chances that funding will be allocated.

Dr Koroshetz suggested (I think I got this right) that in America in 2022, $54 million dollars was allocated to migraine research (top and bottom models combined).  He acknowledged that this level of funding was NOT commensurate with the number of people affected, or the economic burden that the migraine disease places on individuals and workplaces.  Migraines, he suggested, had one of the worst research dollars -to- people effected rates.

Moreover, that funding then gets divided up again in terms of the nature of the research.  Some of the research is focused on short term gains – how can we help people with migraines today?  Whilst some of the research is focused on long-term objectives – what can we learn about the brain that might allow us to create solutions for our children and grandchildren?  Obviously, both approaches have merit, but it effectively halves the available funding if you were hoping that a new medication was about to go on the market.

On the upside, advancements in migraine research ARE being made all the time, and there is a greater awareness about including people with ‘lived experience’ (i.e. migraineurs) in strategic decision making about that research.

Dr Koroshetz spoke of when he was just out of university, practicing as a neurologist – there was NOTHING he could do to help patients.  They just weren’t sure what was causing migraines (blood vessels, muscles, brain signals etc.) or how to help. 

[When my mother was getting migraines when I was a child, all she could originally take was over the counter pain meds.  If you compare the progress that has been made in the 40 years since then, it’s incredible.  So, imagining where we might be in another 40 years is pretty exciting.]

Dr Koroshetz was “pretty confident” that within another 20-30 years there will be more solutions, even a ‘smorgasbord’ of options to choose from.  He said that each time we ‘get our foot in the door’ with one medical advancement, we’re opening the door wider for more solutions to present themselves.  However, he also acknowledged we are still close to the baseline of what we know about migraines. 

[In my mind, I imagined a ladder, where my mother’s pain killers were ‘bottom rung’.  Today, preventatives, triptans and Botox get me a rung or two higher up.  It’s better, but still a ‘low level’ solution, as it were.  The only way forward is up, I suppose.]

Migraines still remain a mystery to science.  Researchers know that migraines are a “brain circuit problem”, he said, like other neurological conditions such as epilepsy, Parkinson’s and depression.  If they were to look at our migraine-brains, the brain itself would be intact and the brain tissue undamaged.  Something else however is happening.  What that ‘something’ is remains a complex mystery.  At this stage they recognise that the signals could be crossed-wires (my words) originating from abnormal blood circulation, breathing, digestion, the autonomic nervous system, and/or external stressors. 

The problem is, as I’ve mentioned before ‘your pain = your brain’; we’re all different and so are our migraines. 

He laughed when he remembered two doctors talking about a ‘common’ headache who then went on to list 57 causes and symptoms.  He laughed harder when he remembered another doctor talking about a ‘typical’ headache and a senior doctor made a surprised face and replied, “oh you’re lucky, in all my years of medicine I’m yet to see a typical headache!”

Dr Koroshetz suggested that if they could isolate where a migraine was coming from then they could target their research.  At the moment, they have several ‘culprits’ but no ‘single lead’.  They know that a migraine is the result of abnormal circuits, but they don’t know where that abnormality starts.  They’re also dumbfounded about how patients can have such different symptoms up to 24 hours before pain starts, from light sensitivity, nausea, bowel changes, dizziness – why, what for?  Why your stomach reacts at all has them confused, he said.

That said, a neurologist today has a lot more options available in terms of an ever-increasing list of medications and interventions, as well as a growing understanding about how lifestyle changes can assist in healing.  Research is still ongoing in terms of CGRPs, Neuropeptides and vagal nerve stimulation (I’ll do more research on these and get back to you with details).  The focus for many researchers is on the patients that are ‘refractory’, that is they resist all forms of treatment.  If they can get through to some of those patients, it will help patient populations in general.

In terms of a “cure”, Dr Koroshetz replied “it’s not impossible” – which is not a no, so that’s good.

The only downside of the whole interview was a naivety-busting moment when the doctor spoke about animal research into pain thresholds.  He mentioned that researchers could now ‘switch off’ pain receptors in animals by packaging a gene in a virus and then infecting the animal.  He also recounted that several advancements were being made with children with extreme neurological disabilities whose quality of life was such that anything was better than nothing, and as such, experimental treatments were ethically excused. 

The upshot is that when you take a tablet, it was tested on several animals and people before it arrived in the palm of your hand.  I suppose I always knew this, but I’ve never realised it with such a thudding, gut-churning force.

Rather than ending on that challenging thought provocation, let’s circle back to the fact that we’ve come a long way in 40 years, and research is underway in several areas by lots of intelligent and motivated people.  Things are going to keep on getting better people.

Good luck researchers,

from Linda and all of Team Migraine!