Neura Health's very own Dr. Thomas Berk and Cannon Hodge were recently featured on Spotlight on Migraine, a podcast by the Association of Migraine Disorders. In this insightful episode, they discuss the complexities of hemiplegic migraine and migraine with unilateral motor symptoms (MUMS), shedding light on these often-misunderstood conditions. Dr. Berk provides expert commentary, while Cannon shares their personal experiences living with MUMS. Tune in to learn more about these rare migraine subtypes and gain valuable perspectives from both a medical and patient standpoint.

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_{This video and transcript were originally shared by Association of Migraine Disorders.}

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Voice-over: Welcome to Spotlight on Migraine hosted by the Association of Migraine Disorders. In this episode of Spotlight on Migraine, Dr. Thomas Berk tells us about hemiplegic migraine and migraine with unilateral motor symptoms, also known as MUMS. Cannon Hodge talks about what it’s like to live with MUMS and the challenges it presents.

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Molly O’Brien: Hello, and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. Today we’re going to get a better understanding of hemiplegic migraine and migraine with unilateral motor symptoms, also known as MUMS. To help us learn more, we’ll be speaking with Dr. Thomas Berk, a neurologist and headache specialist. We’ll also hear from Cannon Hodge, who lives with MUMS. Thank you both for joining us.

First off, we’re going to talk with Dr. Berk. Dr. Berk is a neurologist and headache specialist. He’s also the medical director of Neura Health, a virtual neurology clinic offering specialized migraine and headache care among other neurological conditions. Dr. Berk, a pleasure to speak with you.

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Thomas Berk, MD: Thank you so much for having me.

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O’Brien: Let’s go ahead and get started. Some people out there might have heard of hemiplegic migraine, but others have not. Can you tell us what it is?

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Berk: Absolutely. I would say most people are familiar, first of all, with the concept of migraine and then migraine with aura. And when we talk about aura, these are symptoms that are associated with migraine – typically preceding but not 100% of the time preceding – the actual painful attack. And depending on the kind of aura that you might be experiencing, we might give that kind of migraine with aura a subtype or a different name. We talk about hemiplegic migraine when you have migraine with aura where the aura is some kind of motor weakness. Typically, as the name implies, the weakness is on one-half of the body, and it doesn’t necessarily mean the entire half. Doesn’t have to be the arm and the leg.

Basically, it is – and this is based on the International Classification of Headache Disorders Criteria – it has to be reversible motor weakness. And you can also have reversible sensory, speech, language symptoms, so it’s not like just, you know, motor weakness, you know, by itself. You can have other aura symptoms together with it. The motor weakness can happen over the face and a limb, you know, just an arm, just a leg. And technically, the term plegic means complete paralysis. So yes, technically this term is not 100% accurate. The better term would be hemiparesis migraine, but this is the term that we’ve kind of fallen to. And, you know, paresis would really imply some kind of motor weakness.

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O’Brien: So now that we have a better understanding of hemiplegic migraine, can you tell us a little bit more about what MUMS is also, also known as migraine with unilateral motor symptoms. Let’s differentiate the two.

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Berk: Absolutely. In general, when we think about hemiplegic migraine, people can have it familially based on genetic, specific genetic markers, or sporadically where they don’t have those, you know, markers. MUMS is a little different. It was a term first coined by a mentor of mine, Dr. William Young of the Jefferson Headache Center, in 2007. And he basically compared people who had different kinds of aura, and one thing that he noticed is there were many people that really didn’t experience even full reversible motor weakness, as they normally would, when an aura happens. There were some motor symptoms, and they varied significantly.

Sometimes we generally think of aura as something that, like I mentioned, precedes the attack, lasts somewhere between, you know, maybe 5 to 45 minutes, maybe up to an hour before the attack itself. And oftentimes people with this other motor, you know, issue associated with migraine could have it completely separate from their migraine attacks oftentimes lasting much longer and oftentimes waxing and waning even during the attack and during a preceding aura stage of the attack. So not always completely consistent symptoms. Sometimes it wasn’t even so much a weakness as much as it was a, you know, a sensory heaviness.

A lot of times people think about aura, especially sensory aura, as numbness and tingling, but sometimes it can be this kind of heaviness where it really feels like you can’t move, you know, that limb or that area. And in fact, you can do it, but there’s this thing that feels like it’s pulling or is heavy on the limb. So that’s the significant difference between hemiplegic migraine and MUMS. MUMS is currently not listed as a diagnosis in the International Classification of Headache Diagnoses. Oftentimes things can, you know, specific diagnosis can wait a, you know, a few iterations of the, you know, diagnostic criteria before fully being included, and then it’ll be in the appendix. And once the formal diagnostic criteria is ironed out, then it’ll be fully included.

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O’Brien: Let’s talk a little bit more about hemiplegic migraine, and then we can provide some more contrast with MUMS. So is anyone more likely to experience hemiplegic migraine?

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Berk: Certainly people who have a family history of hemiplegic migraine. The likelihood is – and they should be tested for – specific genes, and there are these, you know, gene tests that are available to order, you know, commercially. Sometimes insurance covers it sometimes. Not and sometimes you have to actually go to a geneticist to actually get them tested. But there are basically, 3 different subtypes based on 4 different genes that will lead to familial hemiplegic migraine. So, they have different names. One is called CACNA1A, ATP1A2, SCN1A and PRRT2.

All these different things, you know, they just sound like random letters and numbers, but they are specific genes that actually if you think that you may have it familially it would be important to recognize because these specific, you know, diagnosis – this familial hemiplegic migraine, especially these subtypes of it – are autosomal dominant. So 50% of your progeny will experience familial hemiplegic migraine. We’ll talk a little bit about also when to be worried and when not to with regards to symptoms if you that this is what you have, and you can even, you know, show it on genetic testing, then the question of do I need to go to an emergency room when something like this happens or not can be very, very different.

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O’Brien: Okay, let’s talk a little bit about a little bit more about what symptoms look like. If you have hemiplegic migraine, what are some of the symptoms when we get this aura, and what might an attack look like to some folks?

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Berk: Absolutely. Oftentimes much more prominent than the pain is actually the sensory and motor weakness, sensory change and motor weakness. Oftentimes it’s something that is gradual, it’s something that just like when there’s a prodrome, you kind of can feel migrainey hours or sometimes even a day plus before the attack happens. You can have some kind of almost prodromey symptom that isn’t even pain. It’s, you know, very much related to the motor weakness. Oftentimes that motor weakness can be so severe that it can really look like a stroke, and you cannot move that area at all.

But like I mentioned before, it doesn’t have to be that plegia where it’s complete paralysis. It’s that, at least subjectively, you feel like you can’t move it as much that, you know, sometimes heaviness. And even when examined, oftentimes there is some kind of weakness. We’ll talk about the different kinds of weakness that people who have more hemiplegic migraine versus MUMS might have on an exam. That weakness oftentimes will lead to the painful attack associated with what we would consider, you know, migrainous symptoms – so the nausea, sensitivity to lights and sounds, and the rest of the migraine attack.

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O’Brien: So now that we have a little bit better understanding of what hemiplegic migraine looks like, what might happen before and then during an attack, let’s go over to the MUMS category, again migraine with unilateral motor symptoms. What are some of these symptoms like? What might an attack look like? And I have heard it called super migraine – is that fair and why?

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Berk: I would say it’s definitely fair, a colloquial term. You know, certainly I would say nobody’s going to have their doctor say I think your diagnosis is super migraine. But it’s something that we definitely refer to – either patients themselves or sometimes even, you know, specialists – when, you know, referring and describing these kinds of symptoms. Oftentimes the reason why that is is because you don’t always particularly see the beginning, middle, or end of a MUMS attack. Like I’d mentioned, oftentimes these will happen without headache pain at all. Although, you know, it can look very much like that hemiplegic migraine that we talked about before.

Oftentimes people with MUMS will have some of the other migraine-associated symptoms that will worsen together with their, you know, relative weakness also. When examined – this is what I was mentioning before – the kind of weakness that a neurologist might find is something more called give-away weakness. That’s actually been described in that seminal paper that Dr. Young published and subsequently also, it isn’t, I would say, something that we use diagnostically. If somebody has give-away weakness, they have MUMS. But it’s classic in MUMS. What that means is I’m sure most of us are going to be familiar with undergoing some kind of neurologic exam.

And one part of it is the doctor’s going to say push against me, pull me, you know, this way or that way in, you know, various muscle groups. And if there’s initially some, you know, power that the examiner is feeling and then only afterwards it seems like it gives way – in other words, you’re only able to maintain that amount of strength for a very brief period of time – we call that give-away weakness. And that would be something quite different than what we would see if we were to exam somebody in the midst of a hemiplegic migraine attack where, like we were saying, sometimes it can be almost completely plegic, you know, although it doesn’t have to be. You really wouldn’t feel much at all in that initial part of the confrontation motor exam.

Another reason why people would call it super migraine is – although I would say epidemiologically it isn’t always this way – oftentimes it’s associated with higher frequency migraine symptoms of migraine attacks. More likely than not, people who have MUMS have chronic migraine. So, they’ll have all of the other chronic migraine symptoms, and sometimes superimposed on top of that will be these motor symptoms too.

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O’Brien: Is it fair to say that in people who have MUMS, their symptoms of the muscle weakness can last longer as well?

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Berk: I would say that’s typically the case. In general, with most of, you know, with hemiplegic migraine as a whole. Even though we say aura shouldn’t last more than hour, and if it does, go and seek medical attention, motor aura, as a whole, seems to last a little bit longer. But it’ll definitely last longer if you have MUMS relative to even familial hemiplegic migraine.

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O’Brien: Okay. So, there are differences – they’re not the same – and there are differences, but there are symptoms that are very similar. So is getting a proper diagnosis crucial, and can that be challenging to do, especially since MUMS isn’t in ICHD-3?

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Berk: No question. And not only that, not only do most, I would say, like most primary care doctors who are arguably the people who are taking of migraine most all around the country because there just, you know, aren’t that many, first of all, neurologists and secondarily headache specialists around, most physicians are not familiar with hemiplegic migraine or MUMS. But even most neurologists, you know, most of them are not familiar with, you know, the kind of back catalog of the headache literature where, you know, in 2007 – and a handful of, you know, other times – people have, you know, described and published about patients who have this unique, you know, unilateral motor, you know, issue.

So, getting a proper diagnosis is absolutely essential. And I would say that that can mean in an appropriate situation, ordering genetic testing. And if not, at least having a good sense of what to do if this happens. Are there better approaches and when to seek emergency room care because there are going to be situations where you might actually be experiencing stroke-like symptoms, and it isn’t migraine.

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O’Brien: Yeah, which I do want to get to that momentarily because some of the symptoms are eerily similar to stroke. So we do want to talk about that. Let’s talk about treatment, though, first before we get there. Because it’s my understanding that the treatment can be different if you have hemiplegic migraine versus MUMS. What treatment options are available for people who have either these types or presentations of migraine?

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Berk: When it comes to familial hemiplegic migraine, there really isn’t anything that’s going to change that genetic predisposition that, you know, most people have. But, you know, depending on the frequency and severity, we would generally think about treating it more like either episodic or chronic migraine. When it comes to MUMS, oftentimes we think about other kinds of treatments, things that are almost in the category of treatments for other longer lasting, you know, or chronic migraine subtypes. Oftentimes if somebody has vestibular migraine, for instance, we would think about verapamil out of all of the antihypertensive medications. We would sometimes even think of lamotrigine (Lamictal) out of all of the antiepileptic type medications.

And those medications do seem to be very helpful, for whatever reason, for the ongoing migraine-associated symptoms that, you know, may be improving a lot slower than the painful attacks. I would argue that both of those medications are much more helpful for non-pain symptoms of migraine rather than migraine-associated pain. Acutely when it comes to MUMS, there is some literature that talks about injectable medications being a little bit more effective. I would say in the case of MUMS, many times I’ll definitely say that my mentor, Dr. Young, will prescribe the same kinds of medications that he would to somebody who doesn’t have MUMS but the injectable formulation of it.

So it might be metoclopramide, like Reglan, but the injectable formulation, an injectable anti-inflammatory-type medication. The nonoral type medications anecdotally do seem to be a little bit more helpful. The one caveat I would say, going back to the hemiplegic migraine, is there’s definitely going to be controversy around if somebody has familial hemiplegic migraine and whether it would be safe for them to take triptan-type medications. There is some thought that many of these specific genetic mutations can be associated with a more vascular cause to the hemiplegic symptoms. And for that reason, I would definitely say the majority of headache specialists will avoid triptan medications, which are vasoconstrictive, but not everyone.

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O’Brien: And let’s continue down that road of stroke. Some of these symptoms sound, again, quite similar to stroke. So how can someone know the difference if the live with migraine? Or maybe they don’t even know that they have migraine how can someone tell the difference between a migraine attack and perhaps a stroke? Because, of course, people with migraine can also have stroke.

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Berk: No question. And technically, migraine – especially migraine with aura – can be a statistically significant risk factor for vascular events like stroke. That doesn’t necessarily mean that everyone with migraine is going to, you know, get a heart attack or a stroke or a blood clot, but there is something statistically that increases the risk. I think that the best rule of thumb to use is if there is a sudden change, it’s much more likely to be vascular. And if it’s something gradual, it’s much less likely to be vascular. In general, if you’ve never experienced anything like this before, this is the first attack that you’ve ever had, you really need to be evaluated. And evaluated urgently because there’s a possibility that it could be some kind of vascular event.

Time is brain. And oftentimes, especially in otherwise healthy people who don’t have other risk factors, that would let’s say make the treatment of stroke with one of the big clot-busting drugs, risky. It’s worth erring, honestly, on the side of getting something like tPA, one of those big clot-busting medications, because there’s only so much that you can tell very early on in a stroke. And if it means lifelong weakness versus, you know, being able to reverse all of these symptoms within an hour or two, I would definitely take the risk of that, you know, clot-busting drug.

The other thing that I would say is if it seems like there’s something different about the kind of aura that you’re having – even if you’re somebody who has hemiplegic migraine and it’s affecting a different limb, a different part of your body – I would say that that’s a red flag. Another important red flag is if the symptoms are lasting a lot longer than they typically do. Now you might be somebody who has MUMS, and you’re always experiencing some degree of weakness or sensory heaviness or always something on one side, and you’ve been evaluated, and, you know, if it’s a little worse or a little bit better constantly, that may actually be the current baseline that you have.

But if your current baseline is full function, full range of motion, full strength, and sometimes you have these episodes – and this is episode is lasting more than a few hours, more than even a day or so – you definitely want to reach out to, at a minimum, your doctor. And say hey, I know that I have this sometimes, this is a little longer than what I typically experience. I wouldn’t necessarily say that that’s a glaring red flag but maybe a yellow flag.

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O’Brien: Okay. And it’s good to be aware of that. I know even in my experience, you know, migraine can change and progress through a person’s life. So when I have new symptoms – and I have chronic migraine, not hemiplegic or MUMS – but if I have a new symptom, I call my doctor because it could mean something else. So is that fair advice for everyone living with migraine?

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Berk: Absolutely, absolutely. If you’re ever not sure, you probably should.

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O’Brien: Okay, that’s helpful. I want to go back. Can you give an example of – because we do want to kind of double down on this point with stroke – an example of something happening if it comes on rapid? Do you mean like if you all of a sudden have a super severe headache or all of a sudden your arm goes weak, can you just give an example maybe?

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Berk: Absolutely. Both of those are red flags for different reasons. Both of those imply different things. In general, something vascular in the brain would be an immediate change, something that would change over the course of seconds. So for instance, when we talk about a thunderclap headache, right, a very sudden severe headache, that’s you know, a little different than, you know, what we would necessarily, you know, think about with hemiplegic migraine, but you know, it theoretically could be possible that somebody could experience a very sudden headache and, you know, unilateral symptoms, you know, and weakness. That might imply something more along the lines of hemorrhage or bleed in their brain.

When we think – when most people think – about stroke, they’re talking about ischemic, you know, type of stroke, and that would be where they wouldn’t necessarily develop the pain immediately, but they would develop the hemisensory or hemi or motor symptoms immediately. So they were able to use their arm perfectly well. Just a second ago, you were typing, you were writing, you know, maybe you were speaking very well, and now you just can’t, and it was very sudden. As opposed to something that, over the course of minutes to an hour, slowly, slowly seems to be, you know, increasing in severity and maybe fluctuating a little bit.

And maybe when you move yourself away from a specific kind of trigger like maybe lights or perfume or, you know, maybe you were exerting yourself and you just, you know, even just took a drink of water, you were able to do some deep breathing, then you started to feel a little bit better and your symptoms improved, that – to me – is like the biggest dichotomy. But absolutely anytime there’s severe pain, that’s always – even if it’s not with hemiplegic, you know, symptoms – any sudden severe headache is something or the thunderclap headache is a red flag no matter what. And if you’re experiencing, you know, the motor symptoms very suddenly, that’s a red flag too.

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O’Brien: So because women are more likely to have hemiplegic migraine than men, it seems important to talk about birth control options. Are there safe contraception options for people with MUMS and with hemiplegic migraine?

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Berk: Absolutely. The real question is anytime somebody has migraine with aura, what, you know, what the best recommendations are with regards to safety, with regards to effectiveness also. And the important thing to realize is that it’s very controversial. And you can ask 3 different kinds of doctors, and they will give you 3 different answers with regards to safety. In general, the way to conceptualize this entire controversy is migraine with aura, like we mentioned, is a statistically significant risk factor for vascular events – for heart attacks, strokes, and blood clots. Adding additional estrogen – and specifically the estrogen that’s found in birth control, which is called ethinyl estradiol – that estrogen is prothrombotic.

So it has the tendency to make your blood clot more than it normally would. Going even one step further, if you’re somebody who has a history of high cholesterol, if you’re somebody who has a history of high blood pressure/diabetes, if you’re somebody who, you know, has had, you know, either bleeding or clotting issues either for yourself of your family, that implies an even further, you know, potential risk, and smoking does too. Even technically the age, being age 35 or greater technically increases the risk for some of these vascular issues too. So we’re always weighing the potential risks and benefits.

When it comes to migraine with aura, we try – as much as we can – to avoid estrogen. If you were to ask the American College of Obstetrics and Gynecology, basically all hormonal birth control options their statement are not safe in anyone who has migraine. That’s the most extreme stance. The American Academy of Neurology/American Headache Society have kind of an interim stance where they say we try to limit it to the least amount of estrogen possible with a caveat, which is we will not use estrogen if it has provoked or changed your aura. And we won’t use high-dose estrogen, which is like 20 mcg of the ethinyl estradiol or more, even if it does nothing to your aura.

And, you know, other and the International Headache Society I would say that they’re probably the most liberal in allowing the most potential options. And they say that is really depends on the other risk factors that you have. And if you have additional risk factors, then we would want to avoid estrogen; otherwise, it’s okay. Let’s say you can’t take estrogen. So, generally IUDs are considered safe. Generally, progesterone only options are considered safe. And, you know, anything that is, you know, otherwise a barrier method, even sometimes the injectable progesterone options or progesterone implants can be safe also. So progesterone is not a problem. And estrogen is super controversial.

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O’Brien: It’s never easy in the world of migraine, is it?

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Berk: Never, never.

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O’Brien: Never, never. Dr. Berk, thanks so much for talking with us today. We have a couple of minutes left. Is there anything else that you want to share with our audience about hemiplegic migraine or MUMS?

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Berk: I think the most important thing is make sure the, you know, if you think that you are experiencing hemiplegic migraine or MUMS, that the doctor that you are seeing is familiar with these diagnoses, has treated patients with these diagnoses before, and is able to answer your questions adequately and appropriately. Oftentimes, these are diagnoses that are complicated enough that you really do need subspecialty care even beyond going to a neurologist. Oftentimes you need to see a headache specialist.

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O’Brien: Absolutely, that’s great advice. We really appreciate you being with us today, Dr. Berk. It’s always a pleasure to talk to you.

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Berk: Thank you, same here.

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O’Brien: All right, now we’re going to shift our conversation and hear what it is like for one person who lives with MUMS. I’d like to introduce our guest, Cannon Hodge. Cannon, thanks for being with us.

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Cannon Hodge: Hi, I am Cannon Tekstar Hodge, and I am the director of content, community, and influencer at Neura Health, and I also am a migraine patient advocate on the side. I was diagnosed with chronic migraine in 2015. And I did not receive my MUMS diagnosis until about a year ago.

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O’Brien: Can you tell us about some of the symptoms that you experience with MUMS?

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Hodge: With a MUMS attack, it comes on like an avalanche or a tsunami and it’s just like whoosh coming on. And all of these symptoms are happening in rapid succession. And I didn’t understand, until much later, that with most people with their auras, they have an aura, and it will last anywhere between 5 minutes to 20 minutes to an hour, and it’s that aura only. With MUMS, depending on the attack, my symptoms can last anywhere between a few minutes to several months. And three months, I want to say, was the longest for some of my symptoms. And every attack is a little different, so they rarely ever have like a full formula where it’s like every time I have an attack, it starts with visual aura, and the visual aura lasts for 20 minutes, and then I know to expect this. It’s very scattered and very different, and it’s kind of like jazz music.

So I have lots of ongoing and acute paresthesia primarily on the right side, but I also can get paraesthesia in my left hand. And that can be, like I said, it’s ongoing, so I always have paresthesia going on in the right side of my body, but it becomes more profound during attacks, and then it will creep into my face during attacks, and I get it in my left hand. And then I do have right-side weakness in my right arm. And it’s my understanding that it’s related to proprioception. So, when I try to lift my arm, it feels like someone’s pushing down on it. So I can lift this arm just fine, and it feels just like a regular arm. But when I lift this arm, it feels like someone is pushing down. And I can lift it; it’s really, really difficult for me to do that.

And if I’m having an attack or a flare of frequent attacks, it becomes more and more difficult for me to lift my arm. So right now, I can kind of lift it up to here, but most of the time I wouldn’t be able to do that. So, the weakness it really depends on where I am in an attack. Last year when I had the 3-month long attack, I wasn’t able to reach for my medicine in my medicine cabinet with my right arm. And then this weakness can extend to other parts of my body, so I get weakness in my neck during attacks, so my head will drop to the side. And my legs also will become weak. I also get dysphagia because of the weakness, so I get to where I can’t swallow. And then I had facial paralysis and facial droop, and this only takes place during my attacks. And it’s so that I can’t move this bottom right side of my face, and then the left side of my mouth drops, and I can feel it. And it just feels like someone’s tugging down.

If the attack becomes more severe, I can’t open my mouth. And it’s real funny because like I can smile from this side, but like this won’t even lift. And then, like I said, if the attack becomes more and more severe, I won’t be able to open my mouth at all, I won’t be able to speak to say a word or anything. And then, I won’t be able to swallow. But most of the time, when it comes to speech, I have dysarthria and other speech difficulties like a stutter and, you know, aphasia and all of that. And then I have ataxia and general clumsiness, paralysis in other parts of my body other than my face. So, sometimes it’s like my whole body gets so overwhelmed, and it gets where I can’t move my body. And it’s happened before where my entire body becomes paralyzed, and I only can move my left hand. This has happened a couple of times.

And fortunately, my left hand has persevered through all of my attacks. So when this has happened, I still can like text people and stuff. It’s very difficult to, but I can, but I won’t even be able to sit up and support myself. Like my torso has no strength or anything. And so that’s a bummer. And then I get vertigo and dizziness and blurred vision. And then I get temporary visual phenomena like seeing fairy lights or like a faint visual snow. I don’t get a traditional visual aura like most people get. And then I have ongoing tinnitus, nausea and vomiting, which can be really inconvenient when, you know, paralysis is happening. And then, I have very consistent allodynia. Allodynia is a really big hallmark symptom of MUMS. And like I said, these symptoms are wrapped in a rapid succession like this tidal wave. So it’s rare that one symptom is happening alone.

And so it’s like my hands will go numb, and 10 seconds later my speech begins to slur. And then 10 seconds later, I can’t hold up my head. And 10 seconds after that, my face begins to freeze, and I feel my lip tugging down, and it’s like all of that’s happening within about 30 seconds. And then it’s occurring to me that this is like okay, here we go again, here’s an attack. And then I’m like okay, let me try to lift my arm, and I can’t. And I realize okay, I should probably take some medicine. And that’s how it kind of begins. And then the symptoms depending on how severe the attack is, like I said, they can last from anywhere from a few minutes to several months.

One of the other hallmark symptoms of MUMS is that the symptoms are not fully reversible. And so a lot of people will have ongoing weakness between their attacks or, like me, ongoing paresthesia. And so it’s not a traditional aura like people think. And so, it’s just a lot more chaos than other types of migraine with aura.

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O’Brien: We really appreciate you explaining to us what it is that you go through. Some of these symptoms sound so extremely challenging. Can you tell us how MUMS impacts your life?

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Hodge: It’s impacted pretty much every part of my life. At first, I don’t think about it impacts my life, but then I’m like whoa. Well I used to have this big job in fashion, and I used to go out all the time. And I used to be super independent. And now so much of my life has changed, and it’s really, really humbling. Because my MUMS treatment has to be so aggressive, and because I have to take so many meds, and I’m using so many neuromodulation devices and everything, I have to work a fulltime job to maintain the type of insurance that will cover the level of treatments that I need to function. If I didn’t have, you know, Botox and all of my other meds, I wouldn’t be able to walk or talk, pretty much.

But I can’t work at the same level of demand as my old careers. So my career and salary have stagnated, which is how it’s the most humbling. Other people who I’ve worked with for a really long time, they are now SVPs of major companies, and I am not. I love what I do for a living, but I never thought that I would be in my forties receiving financial support from my mom. But that’s just the reality of my life, and I’m super thankful that she can help me, but I also hate it. Just because I was independent for so long. And I still maintain a lot of independence in that I live alone, and I live in New York, and most of my family is in Texas. But just the fact that my mom is having to help me still it’s a hard thing to swallow sometime.

Also, kind of romantic relationships are really difficult because my symptoms scare off a lot of people. And as my disease has progressed, like potential partners have backed out mainly because my symptoms overwhelm them. And it’s really silly, if I’m going to be totally honest, because I never ask anyone to do anything for me. But they’ll say, you know, I just don’t think I can handle this, and I’m like what, you’ve never even seen this happen, you’ve just heard me mention it once. But it’s very stressful. So nobody really wants to get in a relationship with someone who has stroke-like symptoms as frequently as I do.

My social life is a lot quieter than how it was prior to having MUMS. I don’t really let MUMS dictate when I do and don’t make plans. So, it could be that my social life is quieter because I’m in my forties and I don’t work in fashion anymore. And then, the other thing is I have like a bewildering number of doctors’ appointments due to both migraine and then all of my other comorbidities for medical appointments. And usually I have at least one medical appointment a week. Oftentimes it’s two to three whether or not I’m in physical therapy or some other kind of rehab. I just finished doing a clinical trial with NYU. And so that can be really disruptive and just physically exhausting, and it can be really costly.

And a lot of times when I have my Jefferson appointments, you know, I’m having to travel to Philadelphia, so it can be a lot. And I think those are kind of the biggest ways that it’s impacted my life and changed things. And I’d just say it’s a lot quieter, and it’s probably not as flashy as my life once was.

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O’Brien: We have a couple of minutes left. Is there anything else that you want to share with our audience?

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Hodge: I think the first thing is to learn as much as you can about MUMS. And I understand there’s not a lot of information out there. I’m glad that MUMS is getting more attention now. But just to learn as much about the condition as you can. Read every single paper, listen to every single podcast about it, so that you can understand the symptoms because that makes the symptoms less scary. And really, try to understand what medications – like when you’re researching – what medications would be most effective for MUMS because MUMS does need a more aggressive acute treatment, and it needs to be kind of just…it’s a different approach, I would say, to other types of migraine. Because it’s like you’ve just got to jump on it.

When I say I try to understand it, it’s like one time I even asked Dr. Young why does my body do this? Because I just want to understand what’s going on. Because once you kind of peel back the layers, it’s not going to be as scary. So when it’s happening to you, you’re not going to panic, and that will kind of turn down that sense of fight or flight. Other things are, like I said, I really try to maintain as much independence as I can. So I keep notes on my phone, and it’s like bulleted out messages that will say can you take me to a seat? Can you help me get on the bus? Can you do this? I have them all written out at the top. It says I’m having a migraine attack; you don’t need to call an ambulance. And I just point to whatever it is that I need to say, and then the person can read it. And that, I’ve found, is incredibly helpful.

I don’t have a medical alert bracelet. The team, at Jefferson, has encouraged that I get something that’s like a medical alert bracelet, but it’s a button. And when you push the button, it can all EMS. Because when I get some of these really bad attacks, I do get this full-body paralysis where I cannot speak, and I can’t swallow. So when that happens, I just need to be checked out. And getting help is a little complicated. I think that breathwork and kind of doing any kind of breathwork or progressive muscle relaxation also help with the kind of calming your body down. When you’re having these incredibly overwhelming symptoms where you lose agency over your body. Because at least if you can’t move your body, you can at least control the way you breathe, and that gives you a better sense of control when so much is spinning out of control.

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O’Brien: Cannon, thank you for being so open and honest and really sharing your migraine story, journey, and experiences with us. We’re wrapping up this episode of Spotlight on Migraine. Again, I’d like to thank both of our guests, Dr. Thomas Berk and Cannon Hodge. We appreciate you both.

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And that’s all for this episode of Spotlight on Migraine. I’m Molly O’Brien, and we will see you next time.

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