As the Summit continues, I find more and more that my observation from the first two days – that many professionals studying migraine are tending to be more inclined to be more cross disciplinary in their observations – continues to hold up.

For Day 3, I felt as if many of those being interviewed were actually captivated by migraine and invigorated by the research potential. This however, came with a bit of a downside. Although I’m learning some new things, I feel mostly talked about and that migraine is a thing to research and share about, and less like the information does anything for the actual treatment of migraine. And this could very logically be explained as “we’re slowly learning more about migraine and there are decades to go before these things we learn have a clinical application” which, sucks.

Interview with Richard Lipton – Part 2: Preventing and Reverting Chronic Migraine

The moment we have probably all been waiting for! How to revert your chronic migraine. The secret is!

oh dear I hope the answer wasn’t in one of the extended paywalled interviews, but probably not secrets out the reversal of chronic migraine is mostly a hypothetical idea.

Or as Dr. Lipton says, reversing chronic migraine is literally “what headache specialists do.” I guess I am unique in that the delightful headache specialist’s I’ve worked with think I’m a damn delight, but that doesn’t really stopping them from throwing their hands up and saying we’ve reached the end of their arsenal and how can they support me as we await new treatments… they say I am not the problem, but I sure feel like the problem.

Of note, is that some research into patients who are successfully moving from chronic to episodic, seem to go back through a bit of rewiring of the brain that likely works to desensitize the pathways that allow migraine to remain so active and so regularly triggered. In these patients, a year or longer of successful treatment (so for example you start taking Qulipta and experience success, you will want to keep at it for 1+ year) there are notable changes in the brain that demonstrate patients are less sensitized. So successful treatment in effect reduces our amount of migraines while simultaneously addressing the pathways, increasing the migraine threshold so that those patients don’t end up reverting to chronic migraine.

It was not clarified if patients in these studies would have to continue the aggressive approaches that got them back to episodic, or if after this successful rewiring one could taper off medications.

Before we jump into some advice for the chronic patients, the interview did pick up where it left off in the preventative conversation. At this point in time, there is no research and no evidence based treatments that actually prevent the chronification of migraine disease. However, Dr. Lipton believes that knowing about the 4 risk factor categories can help doctors make informed treatment decisions to cut back where they can on adding to the risk. For example, in patients who take triptans or acute medications that can contribute to medication overuse, switching those patients to treatments like gepants as they approach those “overuse” amount of medication days, may provide more successful results while simultaneously reducing the risk of chronifying. I think this goes back to the conversation on day 1 regarding the consensus statement that advocates for the CGRP medications to be first line treatments, that we as a whole should be moving towards more safer and more effective treatments as a starting point.

For chronic patients however, Dr. Lipton recommends if therapy isn’t working and you feel like you’re at a standstill you should consider seeing a headache specialist. You may want to layer your treatment approach. You could also look at the potential for misdiagnosis, or incomplete diagnosis. And then re-evaluate the triggers, to see if something was overlooked. Finally, looking at psychosocial factors may provide additional avenues for layered treatments and lifestyle changes.

A mentioned misdiagnosis is hemicrania continua, which is a headache disorder that responds to different medications than migraine. Similarly, New Daily Persistent Headache comes up with the only note being “that’s very hard to treat” which… yeah.

Unfortunately, this interview wraps up on the note that kind of ignores more difficult patients and ignores the realities that migraine is a complex disorder that we simply don’t have well rounded treatment for that will address all patients and places a bit of the burden on finding the right doctor who will pull out all the stops.

Interview with Vince Martin – How Sinuses, Allergies, and Weather Affect Migraine

I was totally not super interested in this interview, because gosh gee how much can we dig into weather, but luckily for me this interview had a better focus and evaluation of both sinuses and allergies which made it well worth while.

The first topic focuses on sinus headache – which is more technically defined as pain related to an infection, or in some cases sinusitis – but for the vast majority of people with migraine, sinus headache is a slightly different headache presentation that we often associate with sinus symptoms. Dr. Martin describes sinus headache as being a complex, interrelated condition rather than brushing it off as a misdiagnosis of migraine.

I found this to be helpful because like other comorbid conditions, people may be experiencing sinus issues and migraine simultaneously and those may have a worsening affect on one another, while the doctors in the respective fields may provide independent diagnosis.

This transitioned seamlessly into the subject of allergies, which frequently create sinus irritation. One study regarding rhinitis (both allergic rhinitis and non allergic rhinitis) correlate with an increased risk of migraine. Even further during an allergic reaction MAST cells react, and these MAST cells are heavily populated around the trigeminal nerve and brain lining. Additional research suggests that people who have certain percent of allergy tests (so 5/20 or 10/20 swatches producing a reaction) that more positive allergy tests directly correlate with more severe migraine.

The connection here with allergies and MAST cells provide an interesting bridge back to the gut health interview, where we discuss the MAST cells in the stomach. So allergies (and food intolerances in the gut) along with allergies in the sinus area all engage MAST cells, and have a direct correlation with more severe migraines.

The general advice here, as with other interviews, follows the idea that getting something like allergies under control can be a critical part of keeping migraine in check. Allergies in this case can serve as a direct trigger, but also prolonged exposure to things like pollen (or other environmental irritants like smoke or pollution) can work to lower one’s migraine threshold and the risk of attacks may increase in these circumstances.

Finally, the weather notes were pretty boring as I expected. Some new research that has been conducted show a correlation between temperature rise (by 10 degrees) and an increase in the start of new headaches (by 6%). Broadly however, the complex nature of weather and the variety of factor’s that shift make it so the specific factor that may impact one individual’s migraines is incredibly variable.

I greatly appreciate the focus here on sinuses and allergies, as I have both (so do you I know I know). But I’ve gone through plenty of ENT work ups, and have spent lots of time asking questions about smoke exposure and how that may influence migraine – and if different treatment options may be viable, and seemingly the answer is not really. Although those answers aren’t great, many of us do have the opportunity to take an exposure based approach and either treat our allergies, or reduce when we go outside, or add various air purification systems to our home to provide cleaner air.

Interview with Lauren Natbony – How Poor Sleep Worsens Migraine: What You Need To Know

Oftentimes sleep hygiene is touted as the cure all for everything, and I appreciate that this interview didn’t focus all that much on it, and rather dived into some sleep disorders and what Dr. Natbony looks for when evaluating migraine patients.

Sleep as we know is a restorative process for our bodies, and when sleep disorders are present, this can disrupt processes in our body and at times worsen our migraines. However, Dr. Natbony acknowledges that the relationship between sleep and migraine is a bit of the “chicken and the egg problem” where these two factors are so heavily influencing and interfering with each other, the actual causal part is impossible to identify. She does however start out by trying to identify sleep disorders in patients, as people with headache disorders are 17x more likely to have a sleep disorder.

A variety of sleep disorders were touched on, but the primary mode for addressing them is CBT – and not the kind of talk therapy many associate with CBT, but a targeted and effective therapy that focuses on insomnia and can retrain the brain to allow our bodies to realign with a properly functioning circadian rhythm.

And as she notes, that properly functioning sleep cycle is totally dependent on you – and isn’t dictated by societies suggested normal wake up and sleep times. When you sleep doesn’t actually matter, so long as you are getting restorative and restful sleep on a consistent basis.

A very interesting topic of discussion for me dug into Melatonin. People with migraine actually tend to have lower levels of melatonin production, which naturally disrupts our sleep cycle. This is fascinating to me as before I was being more aggressively treated for migraine, my doctor’s suggested my melatonin production was hindered and we have been supplementing it ever since.

Now, the way melatonin works has also been a bit misunderstood – by me as well – and this interview does a really great job highlighting that it isn’t a supplement that puts you, but rather a treatment over time that helps to realign your natural sleep cycle.

We talk about not having phones and bright lights (like tv) before bed as a part of sleep hygiene, but Dr. Natbony points out that melatonin is a hormone that begins to be released once it gets dark outside. So if we take our melatonin supplement and then go sit in front of a phone or tv, we are essentially inactivating it by exposing it to light.

One thing that was said in this interview, was that possibly the best way to reduce sleep problems is to reduce migraines. Which is a hilarious thing to say during a migraine summit, rather than a sleep summit. But the premise is that our brain’s are attempting to relax and regulate and with all the pain signals continuing to fire, naturally migraine ends up being disruptive to the restorative aspect of our sleep.

Another interesting part that I find inconsistent in my own experience, was the commentary on the morning migraines – and what happens when you wake up with an attack. From a sleep perspective, if the disruptions are occurring in the wee hours of the morning, she suggests that our migraine treatments may be less effective taken when we wake up because that migraine has already been brewing for hours. This fits well with the advice of taking our meds at the onset of an attack. I do find that this is sometimes true, that certain migraines that I wake up with are totally untreatable.

However, sometimes when I wake up – often a little earlier than when I actually intend to get up – being able to take my medication and go right back to sleep for the last 2-3 hours of my “night” resolves the migraine far better than in other circumstances. What this really means, I am not sure!

The topic of melatonin and light exposure brings up a major question for me that was not touched on in this interview: do our migraine cave habits – you know how we run away from light, shut the curtains, and hide away in the dark during a bad attack – have a negative impact on our bodies even though it feels better on our eyes?

Interview with Peter McAllister – Migraine’s Comorbidities: A Look At Associated Conditions

This interview surprised me a bit, as instead of the typical deep dive into some common comorbid conditions, Dr. McAllister provided incredibly beneficial insights into how understanding what conditions commonly co-exist plus using patients other health issues provide an individualized approach to treating them as whole people with interconnected health problems.

I think the most valuable part of this topic was the fundamental break down of what “comorbid” is. For me, I’d always been under the impression that we as individuals all had a list of co-occurring conditions and these were our comorbidities. This however is false, and using co-occurring interchangeably isn’t quite right.

Instead, comorbid means a condition that is often co-occurring that has some kind of link with the condition. Often the comorbid condition has influence on (for example) migraine, and sometimes they influence each other. Other times, these comorbid conditions share genetic similarities. This understanding of “comorbidities” actually provides very insightful research paths that work to identify both what patients of one disease may want to look for as another condition they have, but also to better understand how conditions work.

My favorite part of what Dr. McAllister highlighted in the understanding of the comorbid conditions, was in evaluating how that changes his treatment approach. It takes into consideration what might make one condition worse, or what might treat both. It also prioritizes getting a handle on other conditions as a method to reduce migraine. An example he used was to address anxiety – as many people may overwhelmingly fear their next migraine attack and end up in a loop where that anxiety heightens the likelihood of having the attack. Addressing the anxiety can in turn reduce the chance of bringing on an attack that’s rooted in the anxiety – or in a more likely scenario going back to the idea of migraine thresholds, help to push that threshold higher so that a simple trigger may not fill up the “trigger bucket” enough to reach the threshold that causes the attack.

In my own experience, I’ve seen this with getting arthritis induced cervicogenic headaches under control through things like physical therapy and allowing muscle strain injuries to heal, then reducing the then worse migraine + cervicogenic headache attacks.

Dr. McAllister asked a lot of interesting questions – like considering patients who have migraine and then a laundry list of other health problems and taking the time to ask about past trauma, allowing for space for the patient to include treatment of trauma which is known to worsen pain, to be a part of a whole person centered approach for treating migraine.

Finally, this interview touched on COVID and notes that indeed a COVID infection has a worsening effect on migraine in migraine patients. He did also note that in these cases, migraine disease tends to return to it’s baseline, albeit sometimes very slowly. A complicated thing to consider when we live in an ongoing pandemic where re-infection is common, we must consider what longer term impacts may occur within migraine disease in that scenario. Of course, that was not discussed.

Day 3 Thoughts

My major takeaway from Day 3 focuses on the comorbidities conversation – one major area of overlap that I didn’t see touched on was the connection between CGRP medication side effects and the activation of autoimmune disorder symptoms for migraine patients who live with migraine and an autoimmune disorder like arthritis or fibromyalgia. This is something I am seeing frequently in my own migraine community circles and know of at least one doctor in the Midwest who has written on the topic to explore it, so I have to wonder when our clinical experiences will begin to push towards research into it.

The day as a whole however was very well done and did deep dives into areas that felt less explored. I found that many of the professionals being interviewed all share common thoughts that push us to consider the whole body and the way different parts of our health are intricately linked. Every once in awhile someone says that Migraine is a whole body disease, but these interviews really drive that idea home and can perhaps give patients a new approach to creating more interwoven networks of care and prioritizing collaboration with their different care teams to then find more personalized insights.

On Day 4 you’ll notice my coverage is a bit lacking, sorry guys but I am pretty foggy and the Summit is exhausting. I did not cover the Cannabis interview because, well I am allergic and there isn’t much I can discern from the information to better help you understand as a result. I also am not interested in discussion guides for our loved ones, I have discussed and written so extensively over the years that I have my own resources on this topic. To sit through it is a bit frustrating and there isn’t a one size fits all approach.

Interview with Shivang Joshi – Exploring Lidocaine, Ketamine and More for Refractory Migraine

So here I thought we were going to get an in depth break down of how lidocaine and ketamine work and have uses for migraine. I thought we would get insights into clinical experiences.

This interview was a pharmacological list of some “rescue” medications – so your emergency line of therapies a step above acute treatments, that you and your headache specialist may utilize for more complex cases. The list is as follows:

• IV Lidocaine – unclear use, also a component of nerve blocks
• Mexiletine – an oral form of lidocaine that can be used at home to prolong the effects of lidocaine infusions
• Ketamine
• Diamox
• DHE
• Ketorolac (Toradol) – you may be familiar if you’ve ever gotten a migraine cocktail
• Psilocybin – mushrooms, currently being studied
• Memantine – off use for an Alzheimer’s medication
• Methergine – an older medication, not super available
• Magnesium sulfate – given as an IV for an acute attack

That was all folks!

But, don’t fret if some of them are of interest to you I have written about my own experience. With DHE infusions, which I didn’t do well with, you can learn more about them here. For Memantine, a drug occasionally combined with migraine treatment to offer a reduction in some of the sensory related migraine symptoms you can read my experience here.

Interview with Elizabeth Seng – Brain Fog: Understanding the Cognitive Impacts of Migraine

Many of us with migraine also experience “brain fog” which Dr. Seng breaks down more clearly for us. She uses the term cognitive impairment, which in migraine is a self evaluated comparison between our normal cognition and the lowered ability we have during or surrounding migraine attacks.

Some research highlights the types of cognitive impairments that commonly occur in different times of the migraine phases, with the pain phase often being reported as experiencing more difficulty paying attention, remaining focused, and the speed at which we’re able to process things be greatly reduced. The prodrome and postdrome phases of the migraine attack are often where the more broader “foggy” term comes into play. And in those times between migraine attacks, roughly 30% of patients report continued cognitive impairment characterized by a difficulty remembering things.

The research being done, particularly by Dr. Seng focuses on the question of if cognitive impairments are narrowly impacted by the shorter duration of the migraine attack, or if the migraine brain over time and with cumulating attacks continues to cause cognitive decline. Her research suggests more cognitive impacts support the first theory, and thus the focus on reducing brain fog and symptoms relies on effectively treating each migraine attack.

The question of links to Alzheimer’s often comes up, and this interview does briefly touch on some of the research complexities that question whether patients are experiencing migraine prodrome related affects or if they may be in early stages of developing dementia. Migraine is of course considered to be an indicator for some of the risk of developing dementia later in life.

Another topic of research includes the concept of “cogniphobia” which is the fear that thinking too hard may cause a migraine attack. This fear links back to previous interviews where Anxiety is a common comorbid condition, and there’s a school of thought that patients with anxiety can stoke themselves into migraine attacks by being so worried about the next one.

Overall, this was an interesting interview that describes some of the way brain fog occurs on a technical aspect during migraine attacks, while exploring some of the research related questions brain fog elicits.

Day 4 Thoughts

Overall I thought Day 4 was pretty unremarkable.

I am very disappointed in the potential conversations that could have been had surrounding ketamine and lidocaine. I have never seen lidocaine (aside from it’s use in nerve blocks) as a potential infusion for retractable migraine patients, nor has a headache specialist ever suggested it. I don’t understand how it would work as lidocaine is a numbing agent. The process of infusing it doesn’t seem very intuitive and wouldn’t we be numbing all bodily systems?

I also think Ketamine continues to be a hot topic in the broader chronic pain world, and even if the information being provided is repeated from previous years – most people are not paying for Access to the summit, so repeating it year after year still has benefit to the majority of patients whom do not have clinicians with any experience of their own to offer.

It was frankly a bizarre choice to use one of the interviews to simply list off the treatment options without providing more detailed use information.

Overall, I think these interviews missed the mark on acknowledging the actual people who have migraine. Brain fog for example, is a continuous and debilitating symptom with migraine that for many patients can provide more negative impacts on their quality of life than the actual pain of migraine. This sort of discussion is critical when we talk about migraine and disability, and can actually help to inform how patients approach applying for various supports available in their country that may take quality of life into account when giving a “disability” determination.

Although plenty of doctor’s and clinicians may view these videos, many of us are indeed people and patients, and it surprises me that the hosts who have on occasion touched on their own migraine experiences, don’t at least take a little time to steer conversation towards being patient centric.

As always you can check out coverage from past year’s summits over at my navigation panel.

If you feel so inclined and are interested in supporting my efforts in covering the summit, you can join my Patreon which primarily pays to keep My Life My Migraine an ad free experience for the thousands of readers who access the resources provided here each year. As a bonus, patrons get behind the scenes looks into my life – which currently look like a lot of century home upgrades and fixes. You can also read many previous posts which include a disabled focused guide on purchasing a century home, video essays on house plant care, and lots of medical musing from over the years.

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