Migraine World Summit Days 5 – 8 Takeaways

Blue background with text says “days 5-8 summit takeaways”

Over the second half of the Summit I found myself rather ill from pushing to watch these videos and my limited coverage reflects that. I’ve decided to publish the last of my takeaways separate from an overall response to the Migraine World Summit.

In the final days, many of the videos were redundant and did not offer new information – you can navigate to my MWS Navigation Panel to locate topics not covered from this years interviews as they have been covered by me in year’s past.

If you missed my notes on the first half of the Summit you can find them here, whereas my collaborative piece discussing the Summit’s racial inequalities talk can be found here.

This post highlights discussions of Medication Overuse Headache, Access Barriers from a rural perspective, and a fascinating talk digging deeper on the sleep and gut impact of migraine.

Medications That Make Migraine Worse – Stewart Tepper MD

Surely I must be honest that this talk didn’t cover what I thought it would, though I guess in full transparency I’m not sure what I thought. I certainly didn’t expect a talk on Medication Overuse Headache. And I almost turned this one off until Dr. Tepper said something I didn’t know: Fioriciet – the drug partially responsible for my own medication overuse headache – can cause MOH with only one pill a week.

One pill. My script is literally for two so I have to laugh.

MOH is something I disagree with regarding verbiage within the community, because by all means one pill a week could cause the condition, but the way the community writes off anyone who was an addict is insulting. I was taking upwards of 6 pills in a day on some instances, and that experience can’t be erased. And one day I’ll have a more in depth, thoughtful conversation on the subject.

This talk discussed a lot regarding what to do to move away from MOH, which was heavily centered on the use of the new monoclonal antibodies as a miracle treatment. These drugs are really great and this doctor was really excited about them, so I will try and hold that same excitement for the community of migraine patients who also has had success with them.

I think the underlying intent of this video was to reach an audience that may have given up on new treatments five or ten years ago, and encourage them to come back. To set up those appointments and say hey, I’ve heard there’s new medications, let’s try them. This is for the folks who haven’t been actively trying new things, because we all know that after decades of managing this disease, sometimes stepping away from the constant poking and prodding is our best choice. Until new research comes out, and for many people they still may not have been exposed to the new drugs that have come out over the last few years.

But for those of us who haven’t had success even with the new CGRP drugs? We are once again reduced to needing to be really loud and demanding advocates insisting that we stop using outdated treatments that were never indicated for the treatment of chronic migraine and simply insist our care matches our needs.

I’m tired. I’m extremely disabled. Maybe the more enthused “these drugs worked for me folks” can take one for the team and be loud on our behalf because we are now halfway through this educational summit and all I’ve been offered is a way to channel my frustrations into the same advocacy that isn’t advocating for those of us with the highest disease burden. I’m going to pass.

In conclusion, basically everything contributes to MOH and you should simply get better so that you have less migraine and headache days and therefore need to treat your pain so much less that you are no longer a risk for MOH.

Upon further reflection, when I read “medications that make migraine worse” I was anticipating a discussion of comorbid conditions, and perhaps dated medications that have side effects of headache and migraine. We got this on some level with analyzing abortive drugs that taken too often can cause MOH or a rebound effect, but what we missed here was a critical analysis of our preventative drugs, our everyday allergy meds, and common drugs used for common diseases we have alongside migraine that all list headache, migraine, and nausea as possible side effects.

This is a conversation I think is perhaps more important than the one we got. The Autoimmune talk did make some reference to this trade off with the biologic treatments so often increasing our migraines as a trade off, so it wasn’t fully absent from the Summit. So many of us have to choose. I know I do. Do I treat the arthritis? I have personally opted away from treating with NSAIDs because of the conflict with migraine, where does that leave mine and likely millions of other’s treatment plans?

Even further, we’re constantly discussing triggers and our “threshold” for developing a migraine attack, with these very common comorbid conditions (I believe its 80% of migraine havers) are already living at our threshold because of the other disease or because of what we need to manage that disease… how do we as migraine patients go to our doctor seeking better treatment? Where can we find that whole body approach and understand that these other medications are in fact making the migraines worse? Why don’t we center that conversation.

Managing Migraine with Little or No Insurance – David Watson MD

Last year, y’all will recall that I was highly critical of the discussion of access barriers beginning with insurance and navigating that when so many folks can’t even get that far. Whether this came about from the critique, I don’t know, but I am very happy this interview was included. I will note, after the criticism of the racial inequalities interview, this interview was one more opportunity to discuss race and those barriers and they took a different direction.

Dr. Watson highlights another underserved population: rural West Virginia. This draws attention to pockets of our population that have mostly been forgotten. They are poor, may lack technological resources or know how, they do not have resources close to them – such as fancy grocery stores – and they have been the communities hit the hardest with rural hospital closures. As Dr. Watson points out, most of this population relies on Medicaid. As it relates to headache and migraine, prevalence is highest in those with an income less than $35K, and in those under age 65 who are on Medicaid. This indicates a strong correlation between migraine increasing disability and limiting income, but an inverse of poverty being a risk factor for migraine.

This comes together to create a lot of barriers. Folks have to drive sometimes hundreds of miles to see a neurologist or headache specialist. These same people often struggle to afford the hotel accommodations and travel costs related to simply seeing their doctor. And then they are additionally burdened by having limited pharmaceutical and lifestyle options based on cost. Medicaid is an important thing to highlight here as well because only commercial insurances qualify to use copay cards or similar assistance programs, not Medicaid, Medicare or military insurance like Tricare.

For Dr. Watson, this means a large portion of these cost saving programs are simply not an option for his patients. He did mention that one way to work with this is to prescribe more affordable medications first and to have people on staff who can navigate any scholarship programs offered and simply not advertised. He also highlights trying to incorporate no cost treatments including getting better sleep and getting exercise.

I think the critical aspect of this interview comes at the end, when considering underserved populations it isn’t just access to healthcare. These populations have what Watson calls a “nasty soup of problems” and he hints at the need for broader social programs to address these communities on multiple levels which will only improve health outcomes.

How Your Gut and Sleep Affect Migraine – Stasha Gominak MD

This talk I was particularly interested in. Over the last few months I’ve been heavily interested in the gut-brain connection and research that relates, which has mostly originated as it relates to IBS. This interview however digs really deep into the specifics of our brain and how it operates during sleep.

Dr. Gominak’s theory is that when our sleep is taken away from us, naturally whatever underlying – often rooted in genetics – condition plagues us, will begin to manifest. This theory came about due to sleep studies she began conducting on her migraine and headache patients who weren’t having luck with their treatments or had luck briefly but would return within a few years with the medicines having become ineffective. One consistent factor was that patients weren’t getting any or enough deep sleep – so even though we may assume we’re getting enough sleep the quality of it may not reach a level where are brain is doing restorative work. It’s been noted that in the last three generations, we consistently don’t wake up rested.

Personally, I relate heavily to this. I sleep well, typically 9 hours in a night. My bedroom is a screen free zone. I have an evening routine that helps promote better sleep. I do wake up occasionally to pee, but I don’t usually view that has much harm as I fall right back asleep. BUT I rarely wake up feeling refreshed or rested with loads of energy.

What this tells me is that I’m likely a good candidate to at least try the methods proposed by Dr. Gominak to improve my sleep and in turn improve my migraines.

This is where it connects to our gut – in the research she did, it was noted that vitamin D had to reach an ideal blood level to begin to make sleep better. And this worked for a few years, but didn’t address other areas of concern such as improving weight or helping with IBS. From my own knowledge of sleep and gut connections, restorative sleep is one of the best management techniques for IBS – this points to her study perhaps not going far enough with sleep.

What happened was that in this time, everyone was developing a B vitamin deficiency causing progress to backtrack. It’s the culminative effect of improving vitamin D in our bodies and restoring our individual microbiome in our gut with the use of B50 vitamin that address the entire issue.

This is of course a mere summary and Dr. Gominak has laid out all of this for us on her site to read in depth. She also has a workbook for how to do this over the course of a year – which has me interested. You can find all of that here.

Overall, this interview was maybe the only one this year that I found to be of extreme value. Dr. Gominak wasn’t just speaking about people who are unresponsive to treatment but she was speaking with and to us. She has no problem saying what we’re all thinking, and that’s that nothing is working and that our meds honest to god suck. She acknowledges that most of the time we are blamed for our conditions or not getting enough sleep and how that simply isn’t right, nor is it a productive approach for patients who are actively trying to do everything right. Which is where many of us who sit watching these year after year sit.

And for that, I appreciate her presence at an otherwise unrewarding and dismissive to chronic patient’s event.

Day 5-8 Closing Notes

It amazes me just how different my experience was this year compared to the first time attending the Summit in 2019. I intend to fully expand in another post and address the numerous issues me and much of the chronic migraine community have with this event.

But the truth is, it’s pretty uninspiring if you’ve already seen it all already. It’s also kind of traumatizing and retraumatizing and my emotional and physical health has taken quite the downswing attempting to cover it this year – especially in not paying for it. The inaccessibility aspect is huge.

I guess, all I have to say here is that if this kind of advocacy makes you feel bad. If it makes you feel forgotten. Worthless. Undervalued. Dismissed. If it makes you question why on earth you even bother with these communities in the first place. If it makes you call up your therapist or a supportive friend. And most importantly, if it makes you long for something better.

I see you.

I see you and I want to do something. Something to not only hold this kind of advocacy accountable and to a higher standard. But something that centers you and your experience and makes you feel valued and accepted as you are, where ever you are.

You deserve to see yourself as a worthwhile part of this community, extremely disabled, moving forward, and not necessarily on a path to be an advocate. You matter simply because you are here, not because of what someone wants you to bring to the community for the sake of others. You matter for the sake of you.

A.

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