Migraine World Summit Takeaways Day 3

Sunset over a darken treeline text says "The Summit: Day 3"

Day Three of the Migraine World Summit focuses in on migraine types. Specifically, doctors and nurses from around the world share information on risks for chronification, identifying how pain works in the brain, connecting hormones to migraines, and focusing in on harder to treat status migraines.

Common Traps of Chronic Migraine – Interview with Deborah Friedmen MD

I was exhilarated that right off the bat for Day 3, the focus was specifically on chronic migraine. However, that enthusiasm went away almost instantly as I began watching the interview. Although Deborah is an incredible physician and world renowned for her work, she missed a critical aspect regarding chronic migraine: our doctors and physicians that many of us see are simply not good at addressing migraine.

Dr. Friedmen was quick to elaborate on what she felt were “traps” pushing people towards chronification of migraine, and every trap was patient focused. She clearly stated how patients simply aren’t communicating with doctor’s well enough to get the right diagnosis. Or that patients aren’t focusing on all of the headache history and just bad attacks. And then that patients are taking too much medication. She failed to acknowledge the thousands of doctors who fall short and fail the vast majority of us, aside from the brief mention of having the wrong diagnosis.

It is not on the patient for not knowing the right things to talk about. Doctors must ask better questions and have defined guidelines for getting a better history from the patient. Doctors must be informed and take the extra steps to educate us about use of medications.

It wasn’t until 4 months before I applied for disability that after years and years of trying to treat migraine, I had a doctor explain the dangers of medication overuse and how migraine drugs specifically cause different problems than other pain management. That isn’t a failing on my part.

There’s also a very strong assumption that we take too many acute medications before we are on a preventative medication, and I know for my case this is incredibly false. I took only a preventative, then a combination of preventatives and acute, and then a preventative with minimal acute options. It is the responsibility of the doctor, not the patient, to advocate for preventative treatment as a first response.

There’s a lot of things we do need to do as patients, including increasing our advocacy efforts – however, the few and far between physicians need to also work with us. Just earlier this month I was denied an appointment with the Mayo Clinic. I’m fighting for my life to have access to the top care and innovative approaches, but am being denied, and I am not the only one. These physicians need to remember that we don’t all have access to them and feel alienated when they speak of us like we do or that we only exist in theory.

How Pain Works in the Migraine Brain – Interview with Patricia Pozo Rosich MD, PhD

In stark contrast to the previous interview, Dr. Pozo Rosich based out of Spain, makes me want to pack up my things and fly directly to her for the continuation of my care. Although the interview itself focuses on pain and how it manifests and changes the brain, she focuses in on the importance of patient education through these processes. To me, doctor’s acknowledging the vast amount of patient education involved in understanding migraine, pain, and treatment is a step in the right direction that I wish would be more widely embraced by doctors everywhere.

One main area of focus that really stood out to me was the concept of how migraine attacks cycle, and how this becomes our brain’s new normal. Pain, when it becomes chronic, in theory stops working to send our body warning signals that something is wrong, and instead the pain becomes a new baseline that it actively returns to. Patricia compares the migraine brain to “phantom limb syndrome” in that our brain still believes we are in pain, even after an attack subsides.

Now, in some instances I can see how this could be interpreted wrong. We’re often faced with the idea that “it’s all in your head” in regards to our pain, but in understanding how our brain is rewired to manage pain, it only makes sense that some of the pain is more muscle memory than an actual migraine attack. Perhaps it’s easiest to think of it in terms of medication overuse headache or rebound where we’re getting head pain as a signal to take more medication because our brain perceives the lack of those chemicals as something wrong.

I also think the most enlightening thing Dr. Pozo Rosich said was that we should “make friends with your pain, don’t fight [it].” I appreciate this sentiment as it includes those of us who haven’t found that perfect treatment yet and are still living with tremendous amounts of pain. It also helps with the messaging that migraine is a chronic condition, it won’t simply go away, even if we do manage it well. Constantly fighting against it or beating ourselves up for each attack we experience, isn’t healthy.

Hormonal Migraine Seasons in a Woman’s Life – Interview with Jessica Ailani MD

One of the most stigmatized area of migraine falls in line with the topic of this interview: women are most subjected to migraine and we cannot handle pain or are hysteric. Jessica Ailani does an excellent job explaining the research being done around the hormone Estrogen and how it relates to migraine.

For 60% of women with migraine, hormonal migraines are common and something we deal with in addition to regular migraine. Dr. Ailani describes them as “mensies” and explains how often in women who have regular migraine and mensies, the mensies tend to be more disabling, last longer, and are harder to treat.

In comparing women and men and hormones, the question of testosterone comes up as a possibility to ward off migraine. Theories suggest that men with lower testosterone perhaps have more migraines. Research however is hard to come by, as the risks of cancer with increasing testosterone is too high for clinical studies to be conducted.

My key takeaway from this interview was advice for women who feel there is a hormonal connection to their migraine attacks and how to address that with their doctor. We tend to journal and track our migraine attacks, but Dr. Ailani suggests also tracking hormone cycles and symptoms associated so you can present both areas to your doctor to find the best course of treatment.

Status Migraine: When Pain Doesn’t Stop – Interview with Christina Treppendahl FNP

Status migraine. Intractable migraine. Refractory migraine. All terms that have come and gone over the years to describe a migraine that doesn’t respond to treatment. It is a difficult differentiation that Christina really helped decipher in this interview. When you’re looking at if a migraine is chronic or status, chronic patients tend to experience zero or low grade pain that they consider to be pain freedom.

This is something very relative to me – my “no pain” days are anything below a pain level of a 4, where I often don’t have any additional symptoms. This would put me in the chronic category not status. Status migraine would best be described in my own history as the days and weeks that left me bedbound with no relief.

This interview also gets into some of the difficulty in diagnosing low pressure headaches, one area of interest for me was the emphasis that they can’t simply be diagnosed by feeling better when you lay down. Rather, a deep patient history is often required for patients who do not respond to any of the standard migraine treatments, to find the low pressure headache diagnosis.

Christina spent some time going deeper into how she treats her patients at the Mississippi Headache Clinic. She emphasized arming her patients with many at home options, specifically combination acute treatments similar to what we’d receive in the ER. Taking NSAIDs and triptans and anti-nausea medications in combination better attacks the migraine from multiple angles. She also provides at home injections for patients who don’t mind administering emergency protocols themselves. This method helps reduce the need for severe migraine patients to go to urgent care or an emergency room to receive adequate care.


Overall, Day Three turned around and provided me with a wealth of information that I wasn’t sure I’d receive based on the first interview. The focus this year is a lot more centered on harder to treat migraines, which is something I appreciate tremendously.

Personally, just on day three alone I am left with a few more options to talk to my doctor about. Much of the conversations surrounding low pressure headaches have interested me in the past, but the idea that it may not be diagnosed just by positional changes makes me want to push harder to find a doctor willing to dig through my history. The idea that low pressure headaches may actually be the background, low grade pain I experience all of the time is huge. It is also an interesting opposing perspective to Dr. Pozo Rosich’s idea that we’re experiencing phantom pain.

In addition to diagnosis, the concept of combining not just preventatives but abortives in order to maximize effectiveness is something I haven’t explored with any doctor. Aside from a brief combo-preventative that proved ineffective, I think either increasing my existing preventative dosage or adding in another medication while also re-exploring triptans in combo with an NSAID could finally give me an acute treatment that is effective.

A.

If you’re interested in accessing the Summit interviews they are available for free the weekend of March 28th, and then can be purchased with an access pass on the migraineworldsummit.com.


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Cover page of my life my migraine patreon where "Alex's Migraine Journey is creating awareness for migraine, chronic illness, and disability"

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