As the Summit comes to a close, I find myself very much in the same place I’ve been in year’s past. Although a substantial number of interviews highlight the shortcomings of medicine, and focus on the future research potentials that may better serve migraine as a disease, I feel disappointed that I am alive.

The migraine world summit reinforces so heavily that it is a disappointment that I am alive.

On Day 7, I was too sick to watch any of the interviews and so I am playing a bit of catch up which not only costs me the entire day today, but will make me slowly wind into feeling pretty awful much sooner. The Summit is a strain on me physically and mentally, but when I see y’all reading and benefiting, I have to acknowledge that I am doing something beneficial to the broader community and so the temporary flare will eventually subside.

Interview with Alan Gordon – Can Pain Reprocessing Therapy Offer Migraine Relief?

This interview takes a more technical and scientific approach to the common idea that we can rewire our brains if only we try hard enough and move ourselves out of the chronic pain cycle. Research shows that in patients who develop from acute to chronic pain, the actual location of the pain in our brain shifts. Much of this supports the idea of the concept of “neuroplasticity” that is commonly discussed as a potential pathway for retraining our brain.

Mr. Gordon discusses something called “neuroplastic pain” which is the idea that the brain is misinterpreting signals and giving us pain because it’s trying to communicate danger. When perhaps there is no danger. This plays in to the idea that migraine is not actually a dangerous disease, isn’t causing physical harm within our body during an attack, and thus the pain signals are warning of us a danger that isn’t there.

Anything from fear to other active negative emotions like frustration can work to keep our brain in the “pain-fear” cycle – and this is primarily what Pain Reprocessing Therapy is working to address. This therapy wants to provide our brain with the message that we are safe, that we are not in any danger, and eventually work to lower the threshold for which our brain becomes activated and causes a migraine. This process uses something called somatic tracking, a process in which we mindfully pause and evaluate our pain and the sensations occurring. We must do so in a way that doesn’t ascribe positive or negative emotions, but simply observes without an ulterior motive. In this process we then attempt to tell ourselves that we are safe.

It’s noted that for people in higher pain, this process may have more negative outcomes and so instead if we find ourselves in higher pain we should instead work to utilize avoidance behavior paired with the messaging of safety. He gives examples of going for a gentle walk, sitting in a jacuzzi, or engaging in something distracting. Once the pain has been reduced, then one is more suited to begin engaging in the somatic tracking, and in theory over time the pain will simply go away.

There’s notes like reactions similar to “I want to get rid of the pain” all serve to be negative reinforcements that keep our brain in the pain-fear cycle.

I find this interview interesting but frustrating. There are certainly overlaps with patients who perhaps have anxiety and may end up in loops with their pain. There’s overlaps in the concept of reducing the migraine threshold, and rewiring the brain to not be so sensitized by various triggers to essentially move out of chronic pain. But as other interviews in this year’s Summit have suggested, the actual underlying mechanisms to do so aren’t well known or understood and the ability for people to revert from chronic pain is not clear or done at high success rate.

Finally, this interview suggests that regulating our systems to respond better to stress, to not be worrying about our next attacks, and to simply be a more even kilter person that engages in routine and consistent mindfulness, who lets go of the emotional side of migraine, the blame and so on… simply doesn’t work for me. I’ve done all that work as have many other people, so why aren’t we better?

What I find the most frustrating is that this interview references the Boulder Back Pain Study in which a majority of patients found pain freedom. Later on it’s indicated that the people who wouldn’t benefit from this are those with structural based pain, thus placing migraine patients more likely in a neuroplastic based pain category. I think that if Pain Reprocessing Therapy truly was so groundbreaking and that migraine was neuroplastic in origin, our treatments would be absolutely revolutionized and we would all get better.

I am sure that this kind of therapy has it’s benefits, but using words like curing pain in a setting like the Summit is disrespectful of all the other work being done to uncover the mechanisms by which migraine works.

Interview With Jessica Ailani – What We Know About the Biology of Migraine

In an appropriate rebuttal to the first interview I watched, Dr. Ailani breaks down the nerve pathways and gives us a biological approach to understanding migraine. To me, this interview deeply supports the idea that migraine is a structural disease and our nervous system is a structure.

The highly technical breakdown explains that there are 12 main nerve systems in our body, and the Trigeminal Nerve is the one that is most involved in migraine. This is a nerve with three primary branches that reach across our forehead (1), cheek and nose and sinus regions (2), and into the chin and jaw (3). For many migraine patients these regions are very specifically represented in our own individual pain presentations.

The theory is that migraine causes an activation of the trigeminal nerve, which then begins to turn on various parts of the brain – regions responsible for vision, appetite, and temperature regulation that may match up with our highly specific non-pain migraine symptoms – and in this process chemicals are released thus starting the migraine. This provides a useful research pathway, as studying the chemicals that are released is what has allowed us to find proteins like CGRP and PACAP.

For a clinical understanding, typically the 1st and 2nd branches of the trigeminal nerve are where migraine patients tend to present with pain. When patients report jaw pain, it may be beneficial to explore additional causes, like TMJ. Similarly, these locations can be used to help with the treating – some of the neuromodulation devices use a tens like unit on a specific branch of nerves. So if you have pain in the forehead, between the eyebrows, the Cefaly device may be more useful, whereas an unclear pain presentation may benefit from the armband neuromodulation device.

There is also something called referred pain, which can explain the sensation where you may have a very tight muscle in your shoulder/neck region and when the doctor presses on it, the sharp pain in your migraine in the facial region experiences a spike in pain. Although not as discusses, I think these locations of referred pain may account for why some patients benefit from things like massage therapy and acupuncture, aiding in some of that tension release that may be at minimum worsening our pain.

The subject of activation vs. sensitization comes up early in the interview. Activation is what is believed to be the process by which the trigeminal nerve is activated and then a migraine begins, whereas sensitization is an activation with either no clear cause, or no ending to that activation. This can cause peripheral sensitization, which many of us may be familiar with when we think of the way our head and face can sometimes feel bruised, like we got punched. This is because those nerve endings have remained activated, with no signal to shut down, causing that over sensitive feeling. This occurrence of sensitization is more common when you have chronic migraine. A clinical response to peripheral sensitization can be using Botox, as it can more directly address those activated nerves across one’s face.

One interesting observation when discussing the brain and different sensitizations was that our brain is perhaps expressing “unhappiness” and that is why we experience sensitivities like light and sound. This comes up in response to “can the brain feel pain” – which going back to the previous interview, the idea was that our brain was misfiring and giving us pain sensations, when based on the biology, it appears the pain is being derived from how our nerves may remain active. To me that “unhappiness” reads as there being something wrong happening, not a negative emotion.

Building off of this, Dr. Ailani points out that our brains can learn from our behaviors – when we are light sensitive we will tend to stay in the dark – and this makes our brain hypersensitive to then being exposed to brighter light. Her advice was to simply be mindful, and perhaps not always have on the darkest sun glasses and avoid all light, or utilize light sources like green light therapy. I appreciate her response as it shows a deep understanding of how many migraine patients simply cannot tolerate bright light, and she isn’t forcing folks to sit in the pain to avoid causing the hypersensitivity.

Day 7 Thoughts

Wrapping up Day 7 and although I wasn’t able to catch all the interviews I wanted, I am very glad I got to watch the Biology one. This felt like a very in depth explanation about migraine, that although I knew a lot of how the nerves work, I didn’t fully understand where the proteins like CGRP play a role.

I also find the relationship between migraine location and potential application with neuromodulation to be a lot more specific and clear which may help patients choose which device they want to try. These devices remain very cost prohibitive and I frankly hadn’t seen that sort of clinical experience to help guide people. I’d previously just seen doctor’s pushing patients to try the next one. I personally tend to have severe allodynia which I’ve found prohibits my ability to use the devices therapeutically.

My biggest takeaway is that Dr. Ailani really has an understanding of the biology in a way that melds perfectly with the real lived experience of patients. The way she is able to describe these pathways in a way that many migraine patients have symptoms that perfectly align with it just feels good. So much science communication remains in the scientific language, and I leave this interview feeling more versed in my understanding of migraine.

Although the Pain Reprocessing Therapy interview was pretty dismissive, I do think in pairing it with the biological framework we may be able to place Pain Reprocessing in a sort of secondary toolbox, like Cognitive Behavioral Therapy focused on Insomnia, or Behavioral Therapy addressing anxiety in that there is a psychological aspect to how our bodies work but I do not think migraine is a psychological based disease.

As we wrap up coverage, I did not choose to cover the Faces of Migraine interview – I am thrilled that they’re highlighting some case studies that touch on different ages and genders along with concerns like treatments interacting with age and pregnancy, but as a person living with migraine writing this for other people with migraine, we are all unique individuals who could be case studies ourselves. I say that to say that the interview would be more valuable for clinicians looking to expand their views of patients. I also have not covered the age related interview discussing migraine in older populations.

Interview with Jérôme Mawet – Building a Migraine Management Plan That Works

I do not know what I expected out of this interview, but this was essentially a brief overview of the role that doctor’s and patients play in treating migraine and the different aspects of therapeutic approaches.

This doctor is based out of Paris and in France the available therapeutics lag behind what we have here in the US. However, the answers to the questions also indicates that perhaps France is a magical place where doctors are never dismissive of patient experiences and where patients will simply never face a doctor who doesn’t listen or have an interest in both drug – and non drug treatments.

The gist of this interview was that as a patient you have the responsibility to know your migraine disease, communicate with your doctor how it presents and what your goals are. Then the doctor’s responsibility is to listen to the patient and their goals and provide pathways through both medication and lifestyle changes to reach those goals.

This interview then discusses using a migraine diary as an aid to monitor your condition, and then using acute and preventative treatment.

The major noteworthy takeaway is that there’s research that shows that there are late and super-late responders to preventative therapies, which could be a consideration for those of us who have failed certain medications to revisit. I say this not based on the interview, but as an aside – perhaps treatments which didn’t cause us material harm with bad side effects, deserve a secondary longer trial. I can’t really think of a treatment like that, as I’m a reaction heavy person, but maybe that opens up a new avenue for you.

Interview with Amynah Pradhan – From Research To Relief: New Migraine Treatments in the Pipeline

This right here is the interview I was most looking forward to in the entire Summit – I wanted to hear what is being looked at that is not CGRP – and Dr. Pradhan delivered on this extensively.

She first summed up the process of research to treatment, noting that this can be a decades long period from discovery of a process and then development into viable treatment that can then go through clinical trials to be approved for treatment. This process involves a substantial amount of funding and many things may get shelved as they await money to continue the research.

Once a target is identified and developed as a potential treatment, there are three drug phases. Phase 1 is tested on a healthy population, designed to evaluate the initial safety and viability. Phase 2 is tested on a small cohort of say migraine patients to see if the therapy has a therapeutic benefit in the targeted group. Then phase 3 evaluates a much larger group of migraine patients to test how broadly the therapeutic benefit can be applied, evaluate safety and side effects, and test out dosing levels. This all occurs before a drug can be approved by the FDA.

Some mentioned areas of research include:

• PPAR – alpha
• PACAP – a promising treatment for migraine that just finished phase 2 trials. This is an ancient peptide that we share with animals like fish. It also has been shown in people who are infused with PACAP that those individuals have a 75% chance of developing a migraine. PACAP is one of the chemical proteins released when the trigeminal nerve is activated.
• oxytocin – preclinical trials suggest there’s some involvement with migraine
• delta opioid receptors – different than mu opioid receptors which are associated with current opioid medications that treat pain but come with high euphoric + abuse risks. The delta receptors show no euphoric properties while still showing promise for pain relief.

Additionally, researchers acknowledge the post – approval studies that can look at patients who either have great success with CGRP and can perhaps find consistencies among more specifics in the patient population to determine who is responding well. They also indicate that some people don’t respond, or only respond partially and there are still headache days where CGRP therapy isn’t effective, pointing to questions on what else may be involved in migraine that research still needs to account for.

Research into genetics was also touched on, indicating that there are genes that travel in families that make you predisposed to migraine, but the actual genetic markers are incredibly rare. They are now looking for genetic groupings to explain the pre-disposition, but acknowledge that those grouping may be incredibly vast so although genetics play a role, the clarity isn’t as clear cut as some make it out to be.

Day 8 Thoughts and Beyond – Wrapping up The Whole Summit

With the final day of the Summit, I am appreciative that we ended on a note that tells us what is in the pipeline for future therapies.

Beyond that, living in the United States I feel a sense of despair hearing about all that is being researched. Today alone I’ve seen news of thousands of health department job cuts, and yesterday many research grants were cut that target research on subjects like Long COVID. I do not feel confident that the aggressive funding cuts that support much of our US economy in terms of scientific research will not have an impact on funding for migraine research.

I do not really leave the Summit feeling like a more informed migraine patient than where I sat two weeks ago. I do not really have any more positive feelings towards the Summit as a whole.

Frankly, my biggest takeaway is that a small section of doctors who cater to the migraine populace are just as fed up as we are and have been forced to diversify their approach to Headache Medicine as we await more treatments. This to me as led to whole body approach that considers comorbid health conditions, and how their treatments both impact and can limit migraine disease. It has also led to identifying behavioral and mental health therapies to address what many of consider “quality of life” concerns.

There are so many barriers though that remain unaddressed.

When we talk about getting our anxiety or depression treated, where is the conversation on better training therapists to allow therapy to be a real path forward for migraine patients? So many therapists have no idea how to manage a complex, chronically ill, patient who may be in on disability. So many times we are left to blame as the person for not doing the work, for giving up, for not being good enough when we really need therapy to address mental health concerns or areas like trauma that very well could be contributing the worsening of our health diseases. How do we get that care when the therapist can’t get over themselves?

How do we as patients across the world, who have to wait years if we can even access care to begin with, address other complex comorbid conditions that some doctors still consider fake diseases? How do we discuss fibromyalgia when doctor’s don’t believe it’s real? How do we get our autoimmune conditions under control when we live in places that have a revolving door of doctor’s who aren’t interested in taking on the last doctor’s problems and thus get told to simply go live our lives?

The answer to all of these things? They aren’t in the Migraine World Summit and they probably never will be. These are all within the blogs and tweets and skeets of people living with migraine, who often at their own expense share their personal information with strangers in hopes the strategy or doctor they had success with (defining success here as “not a condescending jerk”) may provide the same experience for someone looking for help.

So to close this coverage, I offer you the support of the community I’ve found and leaned on. I won’t endorse an org, no I don’t really like them much.

But rather, I invite you to come find our MigraineChat community – hosted on Bluesky by the one and only Beth Morton and on Instagram @migrainechat. We use the #MigraineChat tag to connect and ask questions and meet on the first Monday of most months to chat.

There’s a discord if you’re looking for a chat group too!

Community is out there, and within community comes friendship and comradery. Commiseration, cat pictures, at least one very good Husky, and a whole lot of people with a whole lot of different lived experiences who can help you with mundane questions, weird questions about oddly specific overlapping health conditions, first hand drug experiences, vitamins, and so so much more.

And hey, we don’t have a paywall.

Thank you for following along on my coverage and I hope you have found the information I’ve been able to synthesize useful in one way or another.

A.