As the Summit continues that creeping feeling of not being a good enough patient has entered the room, and you know I think some of these doctor’s who are featured year after year may be really smart but dear fucking lord are they out of touch (dare I say assholes) when it comes to talking about and talking to the patient population.

That is perhaps one reason my write ups may provide continued value long after each interview is hidden behind a paywall – you don’t have to feel bad about yourself and I am here to offer a bit of encouragement for the sickest of us all. Or at least, I hope I am successful in adding back in some of that balance.

Day 5 offers us some looks at both old migraine therapies and their current relevance for use and looks at newer applications of still mostly illegal psychedelics and how the cluster migraine patient population has really driven change and made large strides towards improving research in this area.

Interview with Patricia Pozo-Rosich – Triptans Today: Their Role In Contemporary Migraine Treatment

Although a worthwhile discussion, these conversations center around a very dismissive view of patients and are really far more valuable for the episodic grouping of migraine patients.

Triptans are a long used medication for the acute treatment of migraine, and Dr. Pozo-Rosich highlights their ability to be slightly tailored to individual patients and their needs by understanding how each triptan functions. For options like eletriptan or rizatriptan, they provide faster relief but with more side effects. While naratriptan has demonstrated slower effectiveness but offers a more prolonged efficacy. Picking up a later part of the discussion, subcutaneous sumatriptan may offer a more ideal solution for cluster headaches as the attacks may be shorter in duration and need more rapid relief – so the faster absorption can be beneficial.

Much of this interview highlighted that need to stack therapies – to use different kinds of triptans throughout the course of a migraine attack, or combine triptans with other acute therapies or NSAIDs to optimize their efficacy. Ironically, she suggests 1-2 triptans a day and say an attack lasts 3 days, one may take 6 triptans. As I mentioned, this is a narrowly applicable approach for people with limited episodes of migraine attacks.

I also think this advice falls incredibly short of the discussions other doctors are having in which they advise finding better acute therapy that actually stops the attack. Taking 6 triptans over 3 days does not scream to me “effective migraine management” in the slightest.

Taking triptans for more than 10 days in a month can contribute to chronification.

Some things I found frustrating with this interview was the evaluation of if triptans are working for a patient including the ability for a patient to treat a migraine in the “therapeutic window” which is defined as a singular hour when a migraine increases to mild pain. Dr. Pozo-Rosich believes most failed treatment is due to not successfully getting this window correct. Which is pretty wild and perhaps suggests that a treatment that only works so narrowly isn’t a good treatment option for most people, especially for individuals who may wake up with an attack, may be driving during an attack, or have other limitations that prevent them from taking their meds. It also completely ignores patients who are always in pain and lack clear distinctions in their attacks. When can they take their medication?

Dr. Pozo-Rosich also firmly stands her ground insisting the risk of Serotonin Syndrome associated with triptans is not a thing a patient should worry about. I AM BEGGING YOU TO WORRY ABOUT IT HOLY FUCKING HELL

Okay, so off script but anyone taking multiple serotonin related medications – so your triptans, your anti-depressants, anti anxiety, and even some nausea meds (hey Zofran), and Benadryl – all contribute to the levels of serotonin in your body! For us nauseated migraine patients, us depressed migraine patients, us anxious migraine patients, us mast cell migraine patients… literally any migraine patient with an off use prescription for amitriptyline are at an increased risk of experiencing Serotonin Syndrome. It is the number one thing listed on your prescription print out for a reason. But this doctor has never seen it (I would not want to be this lady’s patient good grief).

I will now direct you to my own experience with Serotonin Syndrome if you’re interested in learning about your real risk factors.

The final part of this interview I found interesting is that in a recent study, triptans are still found to be more effective than CGRP medications for the acute treatment of migraine. All in all, I think this reinforces that even with new state of the art therapies, we shouldn’t take old treatments that work for many people out of our arsenals.

Interview with Joanna Kempner – Are Psychedelics a Legitimate Treatment for Cluster Headache?

Psychedelics are frequently brought up within the patient community and from condescending friends who think they’ve got the cure all for you with their illegal magic mushrooms. However, a group called Cluster Busters has been spearheading advocacy efforts into the research of these drugs in the application of cluster headaches – the severe headache disorder often deemed the “suicide headache” due to it’s extreme levels of pain.

Psychedelics present an interesting challenge due to their “Schedule 1” drug status, making it a jailable offense for possession, and for research purposes. In 1962 the FDA began the practice of having randomized controls for drug trials, paving the way for needing a placebo to be included in research. The nature of psychedelics however, make’s it near impossible to create a placebo as both the patient receiving the placebo and the researcher would be able to clearly define who is in which group.

The research being done and the effectiveness that has been studied looks at a dose somewhere above a micro-dose but still considered low, and patients who have success often report that their dose provides a prolonged, sometimes years long relief from cluster headaches. Although one version of LSD is currently in phase 1 drug trials, a lot of current research is focused on evaluating harms of psychedelics – researcher Joanna Kempner highlights that until recently no one wanted to risk discussing downsides.

Some notable risks include psychological implications, especially in patients who have or may be at risk for schizophrenia or bipolar disorder.

It’s also noted that for patients who are curious about these new therapies, for the vast majority, they would prefer being able to try them in a controlled environment under a doctor’s observation.

Joanna Kempner is authored a book entitled Psychedelic Outlaw that looks into the experiences of pain and using psychedelics as a home based therapy for relief. Many of her focuses are around members of the Cluster Buster’s community, and I wanted to include this book as potential further reading for people who are interested in patient anecdotes.

Overall this interview was really interesting and really highlights the potential alongside the barriers for psychedelics. I had only really heard of Cluster Busters in some patient circles, but I definitely have a newfound appreciation for the high level of advocacy work that they’ve done, especially for a disease that represents a much smaller cohort of patients that don’t necessarily represent a financially incentivizing area of research. This gives me hope for the broader collective power migraine patients may have if we can organize as Cluster Buster’s has in a way that prioritizes the patients, not the bottom line $$ and the doctor’s of the disease.

Interview with Mark Burish and Alan Kaplan – NDPH: Blending Patient and Provider Perspectives

New Daily Persistent Headache is a type of headache disorder that is characterized by a clear and sudden onset of a migraine/headache/or even tension like headache that lasts for 24 hours and continues longer than 3 months. These headaches lack a secondary explanation for the onset of the headache. Some patients look for triggering events like an infectious illness, psychological stressors, or emotional trauma as the starting point for the disease, but oftentimes it is unclear what causes it to begin.

Treatment of NDPH is considered pretty damn near impossible and frustrates headache doctors and patients alike. This interview highlights both Dr. Burish and NDPH patient and advocate Alan Kaplan, digging in to some research and experiences of the disease.

Together they conducted a large scale patient survey to get a look into the actual patient experience, to better understand NDPH and what works for patients. The most effective treatment for acute therapies include hydrocodone, DHE, oxycodone, prochlorperazine, and morphine – all with only some effect measured around 50%. The CGRP preventative therapies show similar “some” effectiveness when measuring prevention – or as we know in the migraine community, looking at factors like intensity, duration, and frequency.

Overall this interview highlights how little is known about this particular subtype, and brings about questions of if the subtype should be further divided to better provide care for patients. It’s also noted that it’s possible for patients to have both NDPH and another headache disorder, which from my perspective could make it very difficult to parse out patients who may be chronic or intractable from those with NDPH, especially when considering how often those of us on the severe chronic side also have similar effective treatment rates and are considered annoyingly difficult to treat.

At this time, there are no approved treatments specifically for NDPH and patients are excluded from clinical trials, which as Alan puts it, they’re getting leftover scraps from migraine treatment. Which sucks!

This interview wasn’t quite what I expected, but I appreciate seeing a patient and provider working so closely together to improve the education around NDPH and giving that recognition to other patients that this disease isn’t well understood and the frustrations patients may have in not making progress is valid. If you’re interested in the advocacy set up by Alan, you can check out his organization NDPH Aware.

Day 5 Thoughts

My thoughts are that year after year we are so dramatically under served and that so many top doctor’s really don’t care about us as people.

That’s how I feel today.

Not covered in Day 5 or Day 6 were the interviews centered on at home remedies and nondrug treatments. With as many interviews that have been rather “list off” style, these lists exist all over the internet and our commonly discussed among patients so I don’t feel like I’m doing a disservice in not including them.

Day 6 has a strong focus on accessibility and finding the kind of treatments that can work together, giving us a bit more care and attention for the chronic side of migraine than we’ve got thus far.

Interview with Matthew Robbins – When One Treatment Isn’t Enough: Layering Therapies in Migraine Management

From a conceptual side, most of us with migraine have likely tried therapies together on numerous occasions. It is a strategy my own Neurologist employed early on in my migraine journey to attempt to optimize the effectiveness of my migraine treatment.

This talk focuses a lot on preventative treatment – where the goal of a preventative therapy is to reduce the frequency, duration, and intensity of migraine. But also to prevent episodic patients from transitioning to chronic, and to potentially aid chronic patients in avoiding disability or transitioning back to episodic.

In layering treatments, Dr. Robbins highlights the potential of a synergistic affect between to drugs with different mechanisms of action coming together to create an even more powerful outcome. This layering can be done in a way that is mindful of side effects – perhaps combining a medication that increases blood pressure with one that decreases blood pressure – and so on, in order to avoid more severe risk of worsening side effects. Meds like preventative CGRP therapies and Botox are commonly used in a layered approach as they seem to play well with the older classes of medications.

It’s noted that at this point research has showed you can combine an acute CGRP medication with one of the CGRP preventives, but the safety of doubling up on CGRP preventives is not known.

One thing Dr. Robbins says really stands out to me, as we learn more about Medication Overuse Headache theories around it have changed, and he likes to take the approach that it’s quite possible MOH might just be a migraine that is out of control, rather than a distinct “overuse” feature that blames patients.

A question in this interview that cut to the absolute core insinuating their being compliance issues with patients and the layering of treatments. Dr. Robbins didn’t quite give the question full standing and acknowledged some hardships patients face in the upkeep of managing multiple therapies. Just before this question was asked, the discussion was centering around just how many patients fail treatment – sometimes dozens – and these new therapies have been real game changers. Which had me in the back of my mind wondering why we speak so positively of patients who failed meds but responded to the CGRP meds, but not those who then failed CGRP. Dr. Robbins pleasantly surprised me in his continued advocacy of us difficult patients, but acknowledging how disappointing it is when patients do fail these CGRP and then noting the hopes for the new drugs in the pipeline.

There is a lot of blame hanging out in the questions of this interview that suggests a lot of difficulties patients face is because they’re doing something wrong, so I deeply appreciate how much Dr. Robbins steered his answers in a way that took that blame away from us.

Overall, this interview gave a promising look at the safety of combining therapies and may be an encouraging new option for folks who have failed or discontinued meds that weren’t effective enough, to perhaps revisit them in combination with something that could enhance the positive effect.

Interview with Fred Cohen – Effective, Affordable, and Accessible Migraine Preventative Medications

I love it when a man – I mean doctor! – acknowledges accessibility and is able to take honest looks at the systems they are in and point out the shortfalls that prevent patients from getting adequate migraine care. The focus of this interview highlights the continued effectiveness of older migraine medications, what can be more cost effective, and ways to address some of the barriers to care.

Dr. Cohen points out that in the US a major barrier is the sheer lack of Headache Specialists, leaving most patients to work with their primary care doctors. In the discussion, it’s noted that many other doctors simply lack the understanding of how severe and burdensome migraine is. The suggestion here when working with a primary care doctor, is to make an effort to communicate the actual impact of burden – whether it be in your work life, social life, being stuck in bed for days, not being able to do regular household chores, and so on, that conversation can work towards getting more attention paid to the condition.

Similarly, being familiar with the non-new migraine drugs – like topiramate, beta blockers, and anti-depressants – patients may find overlaps with what PCP’s commonly prescribe to other patients, and thus are more comfortable with in order to get a start on treating migraine with drugs that are effective and do have decades of supporting evidence for the prevention of migraine. Sometimes a doctor’s awareness of the CGRP’s can push them to feel like it’s a drug a specialist should handle, which can end up leaving patients without care.

This directly correlates to the other major burden of cost – whether it’s high deductibles, cost of prescriptions, cost to get to appointments, and on and on – Dr. Cohen acknowledges the severe limitations placed on the migraine patient population due to the way our healthcare system in America is structured placing financial burdens back onto patients.

Specialist visits can be more expensive as can specialized new targeted migraine therapy. Dr. Cohen really strives to emphasize that even though we’ve got the new CGRP drugs, the older medications aren’t bad! And many of them are more affordable because they have generics available. Some differences in generics were pointed out in that while active ingredients may be the same, fillers may differ. For most people this is inconsequential. From my experience, the overlap of patients with Mast Cell Activation Disorder may require very specific versions of drugs – which may be the brand name – to ensure the fillers aren’t causing reactions.

To reduce drug costs, doctor’s have methods to attempt to get around denials of coverage, but there may also be available samples, specialty pharmacies that offer drugs at discounted rates, and coupon programs for those with commercial insurance. Dr. Cohen finally is the first doctor I’ve encountered to point out that he has a terrible time with his Medicare patients and the affordability (and coverage) of the new drugs, and often this means relying on secondary insurance to pick up the cost or using alternative medications under Medicare coverage improves.

I want to jump off the interview for a moment and highlight Medicare/Social Securities Extra Help plan which provides additional discounts – as low as $0 for Medicare Part D drug plans for eligible people. You can read my article discussing that here. This program has income and asset limits, but many people are eligible and do not know.

I really appreciated this interview, even though it really wasn’t teaching me anything new there’s a lot of value in being able to listen to doctor’s who do offer that affirmative understanding that there are factors well beyond patients control that keep up from always accessing medications and even doctors, and that this is a critical contributing factor to migraine and the worsening of migraine disease over our lifetimes.

Day 6 Thoughts

I felt a bit more represented in these interviews that I watched today. I think most of my thoughts are summarized with each interview, but I am walking away from the Summit today far less irritated than I was yesterday.

I hope you’re finding my continued coverage to be helpful as we approach the final set of days.

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.

A.