Migraine with aura, hemiplegic migraine, and MUMS (Migraine with Unilateral Motor Symptoms) are often misunderstood, misdiagnosed, and underdiagnosed conditions that can present with a range of neurological symptoms beyond headache pain. In this insightful conversation, Dr. Thomas Berk, MD, FAHS, Medical Director at Neura Health, sits down with Dr. Courtney Seebadri-White, a headache specialist at Jefferson University, to discuss the complexities of these migraine subtypes. They explore how motor symptoms can mimic other neurological conditions, the role of genetics in hemiplegic migraine, and how MUMS remains largely unrecognized in clinical practice.

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The discussion delves into the nuances of aura symptoms, the importance of distinguishing between motor weakness and sensory dysfunction, and evolving treatment strategies—including the role of CGRP inhibitors, calcium channel blockers, and patient-centered care. They also highlight the future of migraine research, the need for better diagnostic criteria, and the significance of advocacy in securing more funding for migraine studies.

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Join us for this compelling exchange between two leading experts as they shed light on some of the most challenging and fascinating aspects of migraine neurology.

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Transcript

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Dr. Thomas Berk: Hello, everyone, and welcome, Dr. Courtney White. It’s good to see you.

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Dr. Courtney White: Good to see you, Tom.

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Dr. Thomas Berk: It’s always a pleasure running into you at conferences or around Jefferson. It’s great to have this live discussion with you now so we can talk about something we’re both really interested in: migraine with aura, sometimes with headache, and many other kinds of manifestations, including motor manifestations of all kinds. Thanks so much for joining us and being part of this great talk.

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Dr. Courtney White: Thank you for having me.

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Dr. Thomas Berk: My first question for you, Courtney: What are some of the better ways you try to establish the etiology of someone’s motor symptoms if they have aura? When do you think, “Maybe this is related to migraine,” and when do you think, “We need to dig a little deeper and consider something totally different?”

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Dr. Courtney White: It comes down to, as every neurologist says, a very good history and physical exam, trying to figure out where the story fits. As headache specialists, we have the International Classification of Headache Disorders (ICHD-3), which provides criteria for different conditions to guide us. Of course, not every patient is textbook, but if there’s ever something that makes me think it could be something else, I’ll investigate. If they fit the typical pattern, I’ll lean more toward a migraine diagnosis. And if I’m wrong, we’ll know eventually. We can always reassess and figure it out from there.

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Dr. Thomas Berk: Absolutely. Sometimes, we listen to people describe headaches all day long, and there are subtle things someone will say, a pattern you’ve come to recognize, that seems more like X rather than Y. When people describe their non-pain symptoms of migraine, are there things patients describe that you think are classically or more textbook-like? Perhaps it has to do with the time pattern and how you can fit it into a phase. Sometimes it isn’t super obvious, but you still see some of that.

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Dr. Courtney White: In my clinical work now, I’m in a general neurology clinic. People come in with all sorts of neurological symptoms, and sometimes they don’t even realize it’s migraine. That’s part of my detective work. Certain symptoms people bring up — cognitive fog, paresthesia or numbness and tingling, speech difficulties that come and go — anything that comes and goes rather than is consistent, I’m always asking about a headache or migraine history and going deep into that because often it is migraine, which is so common, and many people don’t realize many of the non-classic visual aura symptoms are actually quite prevalent.

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Dr. Thomas Berk: They are very prevalent and underreported. As a general neurologist, I wouldn’t be surprised if you see more undiagnosed people who really have this or some other migraine-plus syndrome, and it’s never occurred to anyone — not the patients, not the doctors — to actually consider migraine part of what’s going on.

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Dr. Courtney White: I think some of the big ones are people with cognitive fog, dysphasic auras and motor weakness as their auras. I have many people who come in with paresthesia or tingling on their face, and their first question is, “Am I having a stroke?” Part of my job is to sift through the history, the time course. Based on what they’re telling me, I can figure out, “This is more likely a stroke,” “This is more likely migraine,” or “This might be something else.” I think a big challenge in figuring out the diagnosis is that you have migraine, which can cause many neurological symptoms that don’t always fit neatly into a package. I also see many people with functional neurologic disorder who present this way, and I have an interest in both conditions because they both involve me listening to what you’re experiencing and figuring out how it all connects, even though it’s not a nice, straightforward “this part of the brain’s affected, this is what it is.” It’s a little more vague.

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Dr. Thomas Berk: Absolutely. I remember as a fellow, one of our mentors, Dr. Bill Young, used to say — this was when people had been describing and discussing functional neurological disorders, but not as they are now — that migraine is one of the greatest examples of a functional neurological disorder in that there’s clearly something happening, but it isn’t something we can objectively test and prove so often. As neurologists, we are so focused on specific, objective things that we miss the fact that the brain humbles us. When it comes to things like functional neurological disorders, there is so much of the brain we understand, but so much that is still absolutely mysterious that we can’t really test very well, that you can’t study in a clinical way. We’re only scratching the surface, even over the last 20 years, of understanding the inflammatory nature of migraine, understanding the pathophysiology of migraine much better than before. I remember in my own brief talk of migraine when I was in medical school, the professor still talked about the vascular theory of migraine as if it was fact. This was not very long ago.

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Dr. Courtney White: Exactly. It wasn’t long ago at all.

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Dr. Thomas Berk: Exactly. Thankfully, people subsequently have come to recognize that this was a very outdated lecture, and we’ve been able to add true evidence-based migraine information to the neurology curricula.

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Dr. Courtney White: It’s very true. Even in the past five years, there’s been a huge increase in knowledge and understanding, which has been fantastic. But I agree that medical education has not caught up with it, especially because we’re mostly focusing on migraine with aura. Something medical students are still taught is that having migraine with aura is a complete contraindication to estrogen-based birth control, which we now know is false. That’s something we’re working on changing in the medical school I’m at. It’s just because everything’s moving so quickly with what we know about migraine. It’d be great to see other conditions as well, like functional neurologic disorder. I agree with you. I always say migraine is a dysfunction of the nervous system. It’s a functional neurologic disorder that we know a little bit better. So I have some specific treatments and pathophysiology. There are many other neurological conditions we just don’t have the tests or the understanding for yet. With patients who come in, trying to figure out which is which, sometimes I say, “I don’t know if this is migraine or FND, but let’s try some migraine preventives. You also have headache, and we can see if this helps you. If not, we’ll go more of an FND route and do those kinds of therapies.” So it keeps it interesting.

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Dr. Thomas Berk: Diseases don’t meet textbooks. There is often an overlap between many of these disorders. Migraine itself is extremely common, and it’s going to present with common and uncommon medical conditions. Functional neurological disorders are, as you said, poorly understood. But the more we understand, the more we recognize, the more we see that there are thousands, if not hundreds of thousands, of people who, over the years, have been discounted, their symptoms have been discounted, they’ve been told all kinds of things by doctors. Now we see that there clearly can be correlations to centers that may not necessarily line up with an MRI, but may line up with some new treatment protocols.

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Dr. Courtney White: Exactly. The spectrum of migraine is so vast. I fully anticipate in the future things will be more subcategorized. We already subcategorize — we have vestibular migraine, hemiplegic migraine with aura — but I can see it becoming even more categorized as we find different pathways. It’ll make treatment a little more streamlined as we learn more.

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Dr. Thomas Berk: No question. Talking a little more about the different motor migraine syndromes, people often talk about seeing giveaway weakness on a neurological exam. I wanted to hear your comments on that, whether you thought that was diagnostic or more likely just something that’s more consistently seen. What’s your take on that?

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Dr. Courtney White: For everyone listening, giveaway weakness is a type of weakness different from what we call motor weakness. Some people call it “true weakness.” I don’t particularly like that term because it’s all true to the person. I usually say giveaway weakness versus motor weakness. Motor weakness is when I’m, let’s say, pushing on the arm. If you have motor weakness, you’re having trouble pushing back. With giveaway weakness, as I’m pushing, sometimes you’ll have little bursts of strength to push back, but not entirely. Many different things can cause that. A very common one is pain-related weakness. Just having pain makes it harder for you to stay strong. I see many people with more of a proprioceptive or sensory deficit, which leads to it feeling weak because you don’t really know where your hand actually is. When I see giveaway weakness and there’s no pain involved, I’ll check proprioception. It might be off a little bit. That’s the pattern I see. Now, when I talk about giveaway weakness, I usually differentiate it as sensory weakness versus motor weakness.

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Dr. Thomas Berk: I think that’s a great way of making that distinction. It’s very helpful to frame it specifically with, “What you’re experiencing is real.” But it tells us different things based on the different patterns we see. When we’re examining patients, we’re taking in all this information and trying to see which patterns seem most consistent. When you talk about proprioception, what are some great ways of actually testing for it? Neurologists often tell the patient to close their eyes and move their toe up and down, but are there any other fast and true ways of looking at it?

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Dr. Courtney White: One test I do looks at many different things, and if it’s abnormal, then I’ll go into the finger testing. I have someone hold their hands out and close their eyes. If your eyes are closed, you don’t have the visual stimulus to know where your hands are. Someone with a proprioceptive problem might not realize their hand is slowly rising. I’ll also have them try to touch their nose. They have to know where their nose and where their finger are. It’s not a perfect test because people with ataxia or clumsiness have trouble. But I’ve had some people who say other people said they have ataxia, and when I tested other forms, it was fine. But then I tested their proprioception, and it was off. So even though they couldn’t quite touch their nose, it wasn’t because their coordination was off, but rather they just didn’t know where their nose was. That’s what I love about the neurologic exam: you do different things to really fine-tune. People with any kind of neurological deficit will compensate for it, not on purpose, but it’s just how we function. We have to make do with our deficits. Sometimes they won’t realize what they’re doing. So it’s fun to tease out those little nuances.

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Dr. Thomas Berk: Especially if your eyes are closed, you have no idea what you’re doing. When you’re putting all this information together, are there things that point you more in the direction of hemiplegic migraine, either sporadic or familial, and MUMS (Migraine with Unilateral Motor Symptoms)?

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Dr. Courtney White: Many in the headache community would disagree with me, but I think MUMS is much more common than we realize; it’s just underdiagnosed. The majority of people diagnosed with hemiplegic migraine actually have MUMS. Hemiplegic migraine, I feel, is more when we have clear genes we know are related to it, whether it comes from the family or sporadic, happens on its own. Even just the way the aura presents, it’s a little more ordered, closer to a seizure, an epileptic seizure, where you can map on the brain exactly where it’s happening. That’s one of the things: based on how the aura presents and how it kind of marches across their body. Does it fit a nice little “I can map it out on the brain,” or is it just everything’s going on at once? People with hemiplegic migraine tend to have more of the motor weakness, whereas people with MUMS have more of a sensory or the giveaway weakness we were discussing. Hearing the story, the aura — is it this clear line based on what we know in the brain, or is it a pathway we can’t quite follow — will lead me more toward the MUMS category.

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Dr. Thomas Berk: I totally agree. I also completely agree that it’s extremely undiagnosed. One very sensitive question to ask people to figure out if something is more motor versus sensory can be to what extent they really cannot move the affected limb. Some people experience a sensory heaviness that feels like they can’t move the limb, or it’s much more difficult, like moving it through Jell-O. Again, a slight distinction, as opposed to motor weakness, which could also be more related to MUMS. Sometimes it’s worth documenting and knowing the kinds of aura people experience so that if someone starts experiencing something very different, we can say, “Maybe this is OK,” or “We need to investigate things further.” What you’ve experienced is a bit of a red flag if it’s so different from your prior headaches.

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Dr. Courtney White: Exactly. Probably because MUMS isn’t in the ICHD, other headache specialists say it’s not directly in these criteria. So it doesn’t come up, but it fits better with hemiplegic migraine. I’m not involved in how they make those criteria. But you think about…

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Dr. Thomas Berk: Old people sitting in a room…

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Dr. Courtney White: I think once it gets recognized as a legitimate condition, more and more people will learn about it. You look at vestibular migraine; it’s technically not in the ICHD-3, but we know it’s a real disease. I just think more people need to learn about MUMS. While clinically, on your day-to-day basis, it can look really similar, it’s important to distinguish because, one, if it is hemiplegic and it’s familial, you might want to know for family planning. But two, more importantly, we don’t want to restrict possible great treatment options. People with hemiplegic migraine are not recommended to use triptans or DHE. People with MUMS, it’s fine. We don’t want to prevent them from having access to these treatments.

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Dr. Thomas Berk: Absolutely. Bringing up treatment, I know it’s very important to make that specific distinction: Does the patient have hemiplegic migraine or not? I would go a step further and say, let’s say someone does have hemiplegic migraine. Are there specific treatments you find more or less effective? There isn’t a ton based on guidelines, high levels of evidence, randomized, double-blind, placebo-controlled trials. What are some go-tos you typically have when it truly is hemiplegic migraine?

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Dr. Courtney White: I’ll be honest, I’ve treated many people with migraine, and I haven’t yet diagnosed hemiplegic migraine. Because that is an area where we know the exact receptors and channels involved, we know the genes involved, we can do more direct treatment. This would be a patient I would probably lean more toward verapamil, a calcium channel blocker, because it’s more of a direct pathway. I think that’s going to be the future of headache medicine: We’ll have the gene, and then we’ll know that gene is related to that receptor, and so we target that instead of this kind of trial and error. Verapamil is something I normally don’t use unless… but it would probably be one of my first choices in someone with hemiplegic migraine.

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Dr. Thomas Berk: Totally agree. I’ve even seen one of our mentors, Dr. Silverstein, recommend low-dose calcium channel blocker medications acutely as a low dose for some of these situations, based on his own personal experience. I remember as a fellow, there was a patient who came in from San Diego — a high-level naval officer sent to Jefferson. He never experienced pain associated with his headache, but very significant, repetitive hemiplegic symptoms. Our recommendation was to try — and I remember seeing him a few months later at follow-up, and it seemed to be effective — an early, low-dose calcium channel blocker, and if that was ineffective, then a higher-potency anti-inflammatory medication like naproxen or nabumetone. A first-line and a second-line. It wasn’t very common, frequent, or something he really needed preventive treatment for. It would only happen every few months, but it was extremely disabling. This isn’t necessarily a medical recommendation, but it’s an off-the-beaten-path, somewhat unorthodox type of treatment. These calcium channel blockers are mostly used preventively, but they are definitely things we sometimes can use on an as-needed basis.

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Dr. Courtney White: That’s what I love about our job: you can go a little bit off-book and try something different because we don’t know everything, coming up with creative ways to use the tools we have, especially prior to five years ago when we didn’t have as many treatments.

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Dr. Thomas Berk: Another question I have: Many times, people will be experiencing many different kinds of aura. Maybe you would even diagnose someone with MUMS and vestibular migraine; they actually run fairly frequently together. Would that change your treatment options, or what you would choose as a first- or second-line medication? Would you say, “Because they have MUMS on top of that, I would try this instead of that,” or would you say, “We’re going to look at this as migraine with aura, a little more complicated aura, but let’s go through the standard kinds of treatment”? How much does that influence you?

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Dr. Courtney White: What influences me more is which part of the migraine attack is the most disabling. I know many people with MUMS or vestibular migraine for whom the dizziness, weakness, and difficulties are much worse than the pain. The pain is OK, it’s there, but not something that would stop them. Others with migraine, the pain keeps them in bed and they can’t function. That’s how I approach someone with a more

complex aura. The same way I approach anyone with migraine: What is the most bothersome symptom? Let’s target that first. If it’s more of the vestibular, I’m going to be looking more into some of the first-line vestibular migraine treatments, like propranolol. But if it’s more of an abnormal sensory aura or dysphasic, I might go more toward a motor neuron as an option, because even though that doesn’t help with the head pain as much, if that’s not as big of an issue, then that’s what I’ll focus on.

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Dr. Thomas Berk: Totally agree. I would say things are trending almost a little bit more that way. I know when the CGRP acute medicines came out — the gepants: erenumab, fremanezumab, and now eptinezumab — one of the things that was most exciting for them wasn’t so much how quickly they treated pain. If anything, if you look at the pain data, at about two hours, depending on the gepant medication, they’re somewhere between 20 and 30 percent headache freedom at two hours, which isn’t very robust. When you look at most bothersome symptom, that’s actually where these things really shine. They seem to be much more effective over longer periods of time. They do have much longer half-lives. The likelihood to need to take something afterward is a lot less when you’re taking these. They can also help those other symptoms — maybe it’s nausea, maybe it’s the photophobia you’re experiencing — and that’s much better. Maybe the pain, to a lesser extent, is better, and over time, will also improve over the course of that attack. But the most bothersome symptom, for many people, actually is…

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Dr. Courtney White: Not pain. I’m glad that studies nowadays are focusing on that. Because it used to be just pain freedom after two hours. It’s…

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Dr. Thomas Berk: Yeah, the gold standard. That’s it.

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Dr. Courtney White: And for me, someone who has a very… what actually is most disabling for me with my migraine disease is my prodrome. I’m really excited that there’s talk about taking gepants during your prodrome. The fatigue I get up to a day before my attack, despite how well I slept, how much tea I drank, it’s just this disabling fatigue. To know that might be something we’re focusing on, because for me, the head pain is there, but it’s not… it’s manageable. But the fatigue is sometimes just unbearable.

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Dr. Thomas Berk: Absolutely.

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Dr. Courtney White: Always important to focus on that most bothersome symptom, both in studies and also when we treat patients.

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Dr. Thomas Berk: For sure. For sure. Specifically, what you’re referring to was a study that was presented at the American Headache Society conference in Austin that looked at erenumab for the prevention of migraine. It seemed to be very effective. One question someone asked that I thought was a great question at the presentation was, “Did they also follow up with how likely — in other words, they looked at taking it early in the onset with prodrome — and that prodrome itself had improved? How often within the next 24 hours did somebody still experience migraine? In other words, did migraine still occur, or not?” They said that wasn’t part of their study, but that definitely would be a helpful thing to look at long-term. In other words, if you’re treating prodrome, does that mean you don’t have the migraine?

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Dr. Courtney White: Exactly. Exactly. Listen, even only helping the prodrome, that’s not a terrible thing. But sometimes it’s great. I have a migraine…

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Dr. Thomas Berk: Right? No, I agree. And definitely for patients who do have a clear prodrome, I try to focus on that. Even though right now, it’s whether or not you treat it, it’s like, “OK, this is a morning.” Let me make sure I have my rescue handy. I need to make some adjustments. I’ll do that. It just makes when the attack does come, you’re like, “OK, here it is.” And you can take your triptan as soon as possible. Because it’s like, “Oh, I feel that little inkling of pain. Let’s do it.” So it helps you have more control over your disease. I really like to focus on that in people who can find their prodrome. That’s not everyone, but many people can.

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Dr. Thomas Berk: Absolutely. And the last couple of minutes, I just wanted to go through some questions that people asked. One is actually from a team member of ours who asked, “Do we think there’s going to be more research over the next five to 10 years looking at these conditions, specifically looking at the genetics of migraine? You mentioned the trajectory of where migraine treatment is going. So I’ll let you take that one. Do you think we’re going to learn more about migraine over the next five to 10 years?”

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Dr. Courtney White: I agree that over the future, we will. I don’t think it’s going to be five to 10 years, unfortunately. That’s because we have such limited funding and support for research in migraine and other headache disorders. If we really focused on the funding and focused on such a common condition, we probably would be moving a lot faster. I think that’s the big limitation. So I think it will happen. I don’t think it’s going to happen in the next five to 10 years unless there’s a big change in the global importance of…

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Dr. Thomas Berk: Completely agree. I would say advocacy is going to play a huge role with regards to how much we’re going to learn over the next five to 10 years, specifically because it, to some extent, depends on… some of the best and most vocal and most compelling advocates for this disease process. Just telling people what we’re going to say. So many times, people say, “Oh, I have headaches too. Isn’t migraine just a headache?” People just don’t understand. Even sometimes when we do things like Heading on the Hill, people are surprised to hear the stories of the patients, the patient advocates, the doctors, and what we’ve seen, what we experience on a daily basis. Let’s definitely be out there, let’s tell our story, and that’s what will allow the federal funding. That’s what will also get more investigators interested in finding the reasons behind and finding more subtleties with the pathophysiology, more targets for treatment, and other ways of treating some of these subtypes.

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Dr. Courtney White: Yeah, I definitely would love a more targeted approach. The broad-spectrum anti-migraine medications are fantastic, but the side effect profiles of those are just… so having more targeted therapy that’s more tolerated, I think, is the future we need to look toward.

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Dr. Thomas Berk: Absolutely. Another question we got from Thrive with Chronic Migraine is, “Is there a relationship between seizures and hemiplegic migraines, or are they basically totally different things?”

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Dr. Courtney White: They are different things, but there is a higher chance of them being comorbid, which means if you have migraine in general and epilepsy, it’s more likely you’re going to get them together. For a time, we thought that’s what migraine was, that it was some sort of seizure disorder. That’s where some of the anti-seizure medications come in for how we treat migraine. We now know that we were wrong, but that’s OK. It’s still… it’s still the brain not doing the stuff it’s supposed to do, for lack of a better word. It would be nice to see more about how those things connect in the future. But it is, we do know that they exist together, but they are separate, separate…

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Dr. Thomas Berk: Conditions. Yeah. A lot of times when people talk, when people hear the words “depolarizing spread of electrical activity,” it sounds like a seizure. Sometimes we can even make a distinction between electrical activity that’s moving on the surface of the brain versus deeper areas of the brain. That being said, famously, probably one of the top 100 most famous neurological studies documented in the last 100 years — probably top 5 — is, and Dr. Young also loves to talk about this right in the beginning of his lectures and curricula for the fellows, is Liao, the famous Brazilian physiologist, who actually was able to prove the slow-spreading depolarizing activity in his own migraine aura.

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Dr. Thomas Berk: Very exciting thing and something very reproducible. We also see, we talk about chronic migraine syndromes, sometimes a hyper-excitable electrical activity on an EEG, which can be nonspecific, which is basically a medical term that means it can mean a lot of different things. But it is something we sometimes see in people who have chronic migraine. It isn’t exactly, like you said, it really isn't exactly, like you said, it really is a different process. It’s not a seizure, but there are some shared mechanisms.

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Dr. Courtney White: Yeah. And I think it’s important for patients to know that if they do have both, it doesn’t mean something is wrong. It just means you have two conditions that can happen together.

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Dr. Thomas Berk: Absolutely. Well, Dr. White, thank you so much for your time. This has been a fantastic discussion. I really appreciate you being here.

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Dr. Courtney White: Thank you for having me. It was fun.

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Dr. Thomas Berk: Great. And thank you, everybody, for listening.

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