Headache Management in POTS with Dr. Karissa Arca

[00:00:00] Jill Brook: Hello, fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, and today I'm honored to speak with Dr. Karissa Arca, Mayo Clinic trained autonomic and headache neurologist, now on the faculty and staff at the one and only Mayo Clinic, Scottsdale, Arizona. She specializes in the intersection of Dysautonomia and Headache Migraine, which I know is relevant for so many of you out there. I found Dr. Arca because some of you dear listeners kept telling me how amazing she was, and how smart, kind, compassionate, and knowledgeable she was, how she thought outside the box, and is also a patient advocate. So I looked her up, reached out, and she was kind enough to join us today. Dr. Arca, thank you so much for being here on the POTScast. [00:00:53] Dr. Karissa Arca: Oh my gosh, that was probably the kindest and most thoughtful introduction I've ever had. So thank you so much, and thank you to my patients for putting my name out there. I love, love, love doing these types of things so that we can, you know, reach to a greater audience and get people's questions answered. So thank you so much for having me. [00:01:12] Jill Brook: We are so glad to have your brainpower in this space. May we ask how you came to specialize in dysautonomia and headaches? [00:01:20] Dr. Karissa Arca: Yeah. Yeah. Great question. And actually really exciting news. There's going to be a couple more people kind of coming into this field already. So there, there are others. So just wait. But I'm kind of like that classic story of, you know, my my vision for my career and everything just kind of changing as I went, you know, I had this, this perfect plan of what I was going to do in the next 5 years, 10 years, and all that kind of continuously shifting and changing. It's kind of laughable, the people that know me now that I was 100% sure that I was going to be a stroke neurologist. Like, no doubt in my mind, I was going to treat people with stroke. And then as I got into my neurology training, I, I really fell in love with the outpatient side of neurology and, and getting to know people on a clinic visit and really getting to follow them over time. So that was kind of that first switch. And then. Also, when I entered my training, I had no idea that I could even sub specialize in headache or sub specialize in autonomic disorders. So those were completely new concepts to me, even getting into my residency training. And I first fell in love with with headache and, and really just, you know, headache was what I wanted to, to read more about after a long day in clinic or a long day in the hospital and I really, really enjoyed treating these patients and, and getting to see them get better. And the more and more headache patients I saw, the more and more I realized that they also had symptoms of autonomic dysfunction. And, how often that was getting overlooked. And it was really basically the, the inspiration of wanting to be a better headache doctor that got me into the field of, of autonomics. And I was really fortunate that I was able to do additional subspecialty training in, in autonomics. And actually now my, my primary neurology practice is autonomics. [00:03:12] Jill Brook: I was hoping to talk about the intersection of headache, migraine, and dysautonomia, but first do you mind talking about the difference between headache and migraine? [00:03:22] Dr. Karissa Arca: Yeah, absolutely. So I think me and probably most headache specialists out there, we kind of consider headache, any type of pain or discomfort, kind of from the shoulders up. Now, does that necessarily capture everything? Probably not. There's some caveats to that, but that's kind of our general definition of, of headache. And then when we're talking about migraine, migraine is a specific headache diagnosis. And migraine itself is something that we would call a primary headache disorder, meaning that it's actually coming from dysfunctional cells in the brain. It's not something else that's causing the headache. It's not like a brain tumor or something like that. It's the actual neurons in the brain that are dysfunctional and are triggering the head pain. And Migraine in itself is actually a genetic disease. There's not one specific gene that causes it, but it's a lot of different genes, and that's why you will tend to see migraine kind of run in families. And then migraine in itself you know, anyone that's ever had a migraine attack can, can probably speak to this. It is so much more than just a headache. Even as part of our diagnostic criteria to diagnose migraine, it includes other symptoms besides headache. That includes things like flight sensitivity, sound sensitivity nausea, vomiting. Sometimes the, the conglomeration of all of those symptoms can just make any type of activity, physical or mental difficult. And so oftentimes people will be in bed and resting. So, so that's the, that's the main difference there is, is headache is a very general term, and then migraine is a very specific diagnosis. [00:05:07] Jill Brook: Great. So how does a neurologist think about headaches and migraine? What are the important aspects of them? [00:05:15] Dr. Karissa Arca: For me, everything everything about it. And so that's why anytime, even if one of my patients kind of casually, you know, just on the side mentions headache, I kind of have to say. Hold on a second. I'm about to ask you a lot more questions about this so that I can better understand what's going on. And and so absolutely, you're right, the intensity, the frequency, severity, all those things we want to know about. But one of the, any time that I'm thinking about... Any type of headache. The, the things that are in the back of my mind are figuring out, is this a primary headache disorder or a secondary headache disorder? And, and again, primary headache disorder being something that's coming from the, the neurons in the brain, the cells in the brain itself. Usually they're kind of this, this hyper excitable cells that, that trigger a headache. Or is it a secondary headache disorder? Something else is causing that. That could still be something in the brain, like a brain tumor, like blood in the brain. It could be blood outside of the brain. It could be arthritis from the neck. It could be a spinal fluid leak. So many, so many different causes of secondary headache disorders. And, and with the reason why I said, you know, I want to know everything. I want to know all the details is because as neurologists and headache specialists, we do a really thorough history asking you so many questions that, that oftentimes, you know, patients don't know all the answers to when we're asking them for the first time because, you know, they're like, well, I never thought of that. But we take a super detailed history, do a detailed neurologic exam to help narrow down that differential to say, you know, this seems like very classic migraine or, you know, actually there's a couple of things you mentioned that. that raised my level of concern, you know, maybe I want to get some further diagnostics. That might be a brain MRI, spinal MRIs, maybe an autonomic reflex screen to see if maybe there's an underlying autonomic disorder that might be contributing to the headache. So, so that's really any time that I'm discussing headache with a patient. I'm trying to classify in my mind, does this sound more like a primary headache disorder, or does it sound more like a secondary headache disorder, and what else do I need to do to better understand these symptoms? [00:07:36] Jill Brook: Do we know what causes headaches or migraine? Like, do we know what's actually going on in the brain during migraine attacks, for example? [00:07:45] Dr. Karissa Arca: Well, It depends on what we ultimately end up as, as the diagnosis. So, so we do know what, what causes migraine. There, there is still even more that we want to know about it. But, but we think that migraine actually really kind of starts in the part of the brain called the hypothalamus. And basically when that hypothalamus kind of gets triggered or activated to start sending these extra signals, It basically sends a cascade of, of activation of different parts of the brain. And some of those different parts of the brain actually include autonomic centers in the brainstem, as well as tons of other parts in the brain. And that's why migraine, and it's Self is so much more than just a headache because so many other parts of the, the brain are getting activated. That can lead to more of the nausea, more of the light sensitivity, appetite changes, changes in the gut, which I, I think we're gonna talk a little bit about later too. But, but we, we actually do have a really good idea of what's going on in the brain during migraine, but we're still always learning a lot more. [00:08:56] Jill Brook: Oh, wow, that's fascinating. And so, and so I mean, I guess it just sounds like maybe one reason people have so many issues up there is just that there's so many important parts up there and as soon as one thing gets going wrong and it drags everything else into it, it's just, it sounds like a big mess. [00:09:15] Dr. Karissa Arca: I think that that's a really good way of describing a migraine attack. It can absolutely feel like a big mess and like your body is just not doing what it's supposed to be doing. I mean, sometimes I think it's really important to highlight that. The head pain might not even be the most bothersome symptom. It might be the nausea or the fatigue or the brain fog. I mean, similar, just like when we're talking about autonomic disorders like POTS, it might not be the high heart rate that that's, that's that bothersome. It might be all of these other things. And again, that's just because it's so complex. [00:09:48] Jill Brook: So how common are headaches and migraine in the general population versus in dysautonomia? Do we know why they're so much more common in dysautonomia? [00:10:08] Dr. Karissa Arca: Yeah, so in the general population, migraine itself affects about one in five women about one in 10 or 11 children, and one in 15 or 16 men. And so, so it is actually quite common and just like some of our autonomic disorders, like POTS tends to affect women more than men. And as far as the, the frequency or, or prevalence of migraine and other headache disorders in patients with dysautonomia, the, the epidemiologic data is not great. At this point we don't have the best sense of how common a lot of these specific headache disorders are. We do know that headache is incredibly prevalent in autonomous. disorders, POTS in particular. And there was a recent attempt at a, a systematic review to really look at all of the studies that had reported the frequency of, of headaches and to see if we could specifically pinpoint, well, how frequent is migraine? How frequent is a spinal fluid leak? These types of things. And unfortunately, because of just the, the differences in all these studies across the board. It was kind of comparing apples to oranges a lot of the time. So that's again what I'm saying. We don't have great data, but what I will tell you, even what's reported in the literature and what I see in my clinical practice, is I think that the frequency of headache and even migraine in particular is much higher in those with autonomic disorders particularly POTS. That's, that's really what I'm seeing in my practice. All the time. And kind of looping back to what we were talking about earlier, I mean, migraine in itself involves some of these central autonomic networks in the brain. So it's really not all of that surprising to me that, that we see this overlap. But definitely what I would like to see happen in the next 10 years, hopefully even sooner, is better understanding of this specific connection between the two. Do the headaches in your dysautonomia population look very different from the headaches you see in the general population? I'd say that when, when it comes down to the, the ultimate diagnosis of whatever headache disorder someone with dysautonomia has, like, If they, if they meet criteria for migraine, overall, the migraine disease looks relatively similar to someone without dysautonomia, mostly because, you know, there's certain boxes that need to be checked to make that diagnosis in the first place but, I mean, Even if we're, we're looking at migraine as a disease in general, one person's migraine journey is going to look completely different from, from the next. And, and same with, you know, one's POTS journey compared to someone else's, you know, you know, they're going to look completely different. What I would say though, is if I'm specifically kind of thinking about my, my patients with POTS that also have migraine, I would say that a lot of the time the migraine component might be more refractory to treatment, a little bit more difficult to treat than potentially someone without an autonomic disorder. This is, this is not to say that that's a blanket statement for, for, you know, everyone with, with POTS and migraine, but just something that I kind of tend to observe. And the other thing that I see pretty frequently in my my POTS population that also has a migraine is I do see a lot of what's called postural headache. And so, I When I describe a postural headache, I'm usually referring to a headache that is either brought on by change in position from flat to upright or significantly worsened in that change in position and then better with flat or resolved when flat. And that can also go the opposite way when we're referring to orthostatic headaches. It could be worse in the flat position. Oh, that's interesting. That can go either way. Yeah, yeah, and so I always like to specify that I'm talking about orthostatic, worse in the upright position and And then that, that leads me to a lot more diagnostic testing in these, this patient population to make sure that I'm not also missing something like a spinal fluid leak or, or these other causes of orthostatic headache. And so, so this is a, a big area of interest for me is better understanding orthostatic headache in general, because we, we have this entire, handbook or manual of all the diagnostic criteria for all the headache disorders, but we still don't have a specific headache disorder that's associated with POTS. And will there be one? I don't know. You know, I, we just need to, to better characterize the headaches in our patients with POTS as well as other autonomic disorders. to see if there are certain characteristics that are you know, definitively seen in this patient population. So that's, that's a big interest of mine to to better understand in these patients. [00:15:13] Jill Brook: So I'm getting the idea that the world of headache is just as complex as the world of dysautonomia where all the patients are different and nothing's simple and it's not like, oh, you can just treat it or that, like, do you even, do we even have any clue? Like, does it seem like they just co occur, headache and dysautonomia? Or does it seem like one causes the other or vice versa? Or could it go either way or just completely unrelated? Do we know any of these things? [00:15:43] Dr. Karissa Arca: Right, I mean, you're very right in that, that the world of headache is, is very complex, just like that of autonomic disorders. I, I think that maybe we're, we're a little bit more ahead in some of our, our headache driven research and things to be able to have more specific treatments for our patients with headache and more FDA approved treatments you know, where we're still trying to move the needle for that with, with POTS and other autonomic disorders. But I would say, I mean, I definitely think that these things are, are interrelated. I, I, it's very hard for me to, to separate them. Now, do I want to separate them in my patients? You know, let's try this specifically for headaches. See if it works for headache. Yeah, we do need to make that separation when we're, when we're talking about treatment plans and, and things like that. But I do think that these things are, are so interrelated. And sometimes if we use a medication for POTS or one of its, its associated comorbidities, maybe that's mast cell or these other types of things. I have seen the headache part get better too. Sometimes we just, you know, we just don't know. And so again... That's why we just need to better understand all of these things together. [00:16:52] Jill Brook: Oh, that's fascinating. Can you talk more about treatments and especially like what patients can expect from the process of trying to treat it? [00:17:01] Dr. Karissa Arca: Yeah, absolutely. So, there is actually some overlap in treatments for for migraine and POTS specifically, and, and I'll talk about that in a second. The, the two ways that you'll hear us talk about treatment of, of migraine is we'll separate things into what are called abortive treatments. So those are really the as needed treatments for when someone is having an acute migraine attack. And in the ideal situation, someone takes their acute or rescue medication, and within a couple of hours, hopefully they feel significantly better, or maybe even the migraine attack is resolved. That's the goal with any acute or abortive treatment. And then you'll hear us talk about treatments that are preventive in nature, and this is to reduce the frequency and severity of migraine attacks over time. And so, the overlap between migraine treatments and POTS is really seen more in this preventive aspect of things. Interestingly there are several beta blockers that are FDA approved for prevention of migraine which is interesting considering that we don't have that for POTS and that's, you know, one of our main medication classes that we use all the time for POTS. Now the doses that were studied for the prevention of, of migraine are much higher than we typically use for, for POTS, so there is that caveat but what I can say just from personal experience is a lot of times even at the lower doses of beta blockers that we'll use for, for treatment of POTS, I have seen improvement in migraine. Is that the case for everybody? No, of course not but I wouldn't rule it out as a possibility that even these low doses can help from a migraine prevention standpoint. And then some for me in my clinical practice, some of the other overlap between migraine treatments and POTS that that I personally use is some of these other medications that were originally developed to treat seizures. So our anti convulsant or anti seizure medications that are very commonly used for migraine prevention, but I actually find that some of these medications can even kind of have a calming effect for this this overactive nervous system that we oftentimes see in our patients with autonomic disorders. And so sometimes I'll borrow those medications as well and see if they can help from both a headache standpoint as well as just that kind of overactive, you know, fight or flight nervous system responses that we see in autonomic dysfunction. So, so that's kind of some of the overlap that we see in, in medications that we might want to choose for treatment of both conditions, something like POTS and migraine. But then it's also really important for me as, as a specialist in both headache and autonomic dysfunction to think of which medications that I might want to use for migraine that could worsen the underlying autonomic dysfunction. And, and again, this is one of those situations that we never quite know, someone might tolerate these, these things just perfectly fine, but it's definitely something I keep in mind, especially with some of our newer medications like the CGRP monoclonal antibodies that are migraine specific preventive treatments. We know that some of them can slow down the gut a little, so if someone already has an underlying GI Motility Disorder, I may not feel super strongly about using those medications right off the bat. We, you know, with a shared decision making and discussion with the patient, we might elect to do that to go ahead and use it and give it a try but it might not be my kind of initial inclination or, or go to. Similarly focusing on the gut a little bit more, if someone does have gastroparesis, or again, some of these other motility disorders, they may not absorb the oral medications that well, so I might be leaning towards more non oral medication options. So these are all the things that I'm keeping in the back of my mind when I'm treating patients with both autonomic dysfunction and migraine. [00:21:11] Jill Brook: Have you seen good results with vagus nerve stimulation for headache or migraine, or have you seen any scary side effects associated with it? [00:21:20] Dr. Karissa Arca: Yeah so we have one FDA cleared device for use in migraine and it's called the GammaCore device, which is a non invasive vagus nerve stimulator it's approved for several other headache disorders as well, including cluster headache and more recently potentially for use in, in hemicrania continua. And the, what I like about the non invasive vagus nerve stimulation, and as well as a lot of our other neuromodulation devices, is that it can be used both preventively for migraine, as well as for abortive treatment. So it offers both of those options. And... One, what I would say is, has been the biggest limiting factor for me using not only the GammaCore device, but also really any other neuromodulation devices in my practice is the fact that they're not covered by insurance. And so this has significantly limited the, the use of these devices in my personal practice. I, I like to, to discuss them with a lot of my patients, but ultimately the, oftentimes, the decision is to not try it because of the out of pocket expenses. So that being said, in my own clinical practice, I don't have a whole lot of patients using non invasive vagus nerve stimulation for treatment of migraine. I'd say of the patients that I do have using the device, most of them have cluster headache, and that's because we have even less treatments available for cluster headache. So I think a little bit more patients are willing to to give it a try. I also did a very small study. I, I believe it only included three patients. It was a case series looking at the use of non invasive vagus nerve stimulation for something called visual snow which is something that we frequently see in people with migraine. Although visual snow although visual snow in itself is much more rare. And I did actually follow these patients, I think, over about 10 weeks and, and so I was able to follow this very small cohort of patients pretty closely and really didn't see any, you know, big, bad, or scary types of side effects that we were able to attribute to the device. So I really haven't seen a whole lot negatively from from the use of this device. What I will say is that we really just don't know how patients will do if they have significant heart rate or blood pressure libility and, and that's even listed on the, the Gamma Core website itself, is that, you know, it just really hasn't been studied in, in that type of patient population. But you're right. There is a... Tons of talk about vagus nerve stimulation for use in people with autonomic disorders. It was a big topic at the last American Autonomic Society meeting and it got me really excited. And there's a lot of talk about use of other types of devices, things that are going to go in the ear and stimulate branches of the vagus nerve in the ear. So I'm really excited to see what these, there are several studies that are looking at it, specifically for patients with autonomic disorders. So I'm really excited to see what these studies are going to show. [00:24:34] Jill Brook: So you have written some fascinating articles about potential links between headaches and the gut. Can you talk about that? [00:24:43] Dr. Karissa Arca: Yeah, most recently I wrote a review paper with some of my colleagues in the GI department here at Mayo so I'm very thankful for, for their expertise. And ability to to weigh in on some of this topic as well. But I would say one of the the biggest things to to know about the connection between migraine and the gut is that there have been studies that actually show that there is slowing of the gut, specifically of the stomach, so gastroparesis, during acute migraine attacks, as well as even in people with migraine outside of an acute attack, that there might be more just persistent slowing of the gut. And again, not super surprising given everything that we know about all these different connections with the autonomic centers in the brain, you know, we were just talking about vagus nerve stimulation. So we know that the vagus nerve, which is a huge pathway to the gut is very involved in migraine. And this kind of loops back to what I was saying earlier about treatment options is kind of knowing and understanding that that gut dysmotility may be a component of migraine, we need to keep that in mind when we're choosing what treatment options we want to use for our patients. So when someone that we do know has gastroparesis or maybe has very significant GI symptoms with their migraine attacks, potentially avoiding the oral medications and maybe doing something like a nasal spray or an injection. Or maybe a neuromodulation device may be preferable so that that medication can actually get absorbed in their system and actually has a chance to work. And then that actually brings me back to our, our just recent discussion about the GammaCore device is there are several small studies that have shown. that that specific GammaCore device for non invasive vagus nerve stimulation has actually improved some symptoms of gastroparesis. So that's just a very exciting connection and so I'm, I'm really looking forward to again seeing the results of some of these upcoming studies that are looking at vagus nerve stimulation for autonomic disorders. [00:27:01] Jill Brook: When should someone seek medical advice for their headaches? [00:27:04] Dr. Karissa Arca: So I would say that anyone who has headache that is disruptive to their day to day functioning should seek medical advice and potential treatment for their headache disorder. That particularly includes things like tension type headache and migraine and these types of things. And unfortunately what I would say is that just like autonomic disorders, migraine and a lot of these headache disorders can also be highly stigmatized. And so that can make getting an accurate diagnosis and treatment and, and as you mentioned, kind of in my intro, I'm very passionate about advocacy. And so this is very much something that I am actively trying to, to reduce in, in both the headache community and the, the autonomic community. And I think one of the big ways is through education. But just because you might have had a, a negative experience trying to get treatment or, or help for your headache or autonomic disorder does not mean that you should give up. There, there are plenty of us out there that want to listen to you and, and help you. I know we're few and far between but please don't let that discourage you from, from seeking another opinion. [00:28:28] Jill Brook: Is there anything that your patients can do to make it easier for you to help them? [00:28:34] Dr. Karissa Arca: Yeah, so anytime I'm meeting a new patient, I really like to understand the timeline of their symptoms and understanding that for some patients this, whatever their symptoms are, whether it's headache or autonomic related symptoms, this might be lifelong. Others remember a specific day where their life just kind of got turned upside down. But kind of having this general framework of what symptoms started when is just really helpful for me to get the overarching picture and can really help me kind of hone in on what I think might be going on. And also having a list of any medications that have been tried. For any of the symptoms, again, whether it's headache or autonomic related symptoms, what doses you got to, why that treatment was discontinued, maybe it was due to side effects, maybe it was because that medication was ineffective having that information up front is also really helpful because then I, I know what you've tried and we don't have to, you know, kind of revisit the drawing board with that. And then the last thing I would say is, especially kind of from an autonomic standpoint, we of course know that the autonomic nervous system controls basically everything in our body, and because of that, symptoms can be so widespread. But really kind of, if you're able to identify your maybe one to two most bothersome symptoms, what gets in the way of your functioning the most on a day to day basis, I think that that can also be helpful for me to try to create a better treatment plan for you by addressing some of those top concerns first, and then we'll see how things go and kind of whittle away at things as we go, understanding that this is going to be a long term relationship and we'll, we'll have to kind of keep addressing symptoms as we go. [00:30:27] Jill Brook: Is there anything else you'd like patients to know about headaches, migraine, or dysautonomia? [00:30:33] Dr. Karissa Arca: I would say number one, kind of like I already mentioned before, is you don't need to suffer alone. You know, there are headache and autonomic specialists out there. We want to listen to you. We want to help you. I know we're few and far between but don't give up. And then the, the other thing I would say is probably a lot of people that listen to this podcast are familiar with things like Dysautonomia International, which is a fantastic advocacy group for, for education, support groups, all of these types of things. But these groups exist in the headache and the migraine world as well. I would specifically recommend Miles for Migraine. But then there's other advocacy organizations, things like Clusterbusters and CHAMP as well so I would definitely take a look at these organizations that also have great educational materials and can even help you prepare for your visits with, with a headache specialist with some of the tips I mentioned previously. [00:31:30] Jill Brook: Dr. Arca, thank you so much for sharing all this great information with us today. We are so thrilled to have your brain power and research and compassion on board to help this community. Much gratitude from all of us here at the POTScast. Okay listeners, that's all for now. We'll catch you again next week, but in the meantime, thank you for listening, remember you're not alone, and please join us again soon.