Hi, I’m Molly O’Brien and this is Spotlight on Migraine. Migraine prevention is a big topic. So in this two-part series, Dr. Jessica Ailani is joining us to help break it all down. In part one, we’ll discuss what migraine prevention actually means, when it’s time to consider, and how to measure success. 

I’d like to introduce Dr. Jessica Ailani. She’s a neurologist and headache specialist. She’s Director of MedStar Georgetown Headache Center and Professor of Clinical Neurology at MedStar Georgetown University Hospital. Dr. Ailani is on the Board of the American Headache Society and an advisor to the National Headache Foundation. 

Thanks so much for being here today.

Jessica Ailani, MD: Oh, it’s my absolute pleasure.

O’Brien: What do we mean when we’re talking about migraine prevention?

Ailani: Prevention doesn’t mean we’re going to completely get rid of this disease. Unfortunately, right now, that’s not what prevention is about. Prevention is more the idea of using well-studied therapies to reduce the frequency of migraine attacks. And by reducing the frequency of attacks, the therapy should really help improve your quality of life.

So, if you think about it as, this disease is making it really hard for me to do the things I want to do, to get ahead in life, to spend time with friends and family, to not feel so isolated, prevention is probably the way to go.

It’s exciting because there’s different types of things. We have medications, vitamin supplements, behavioral therapies, like biofeedback and acupuncture, and neuromodulation devices. It’s not just medication.

O’Brien: I want to get into that just a little bit more, another follow-up here. What should our goals be with migraine prevention when we’re out there talking to our provider?

Ailani: I think this is a great question. Sometimes we think of goals as, like, oh, it’s a new year, I’m going to come up with goals and ideas of what I should do. But really in a disease state, how often are we thinking about goals, except for things like weight loss, right? There’s always goals for weight loss. I want to lose this much weight. I want to be this much more functional, active. I really encourage our listeners to think about migraine in the same way. You have to have some goals, otherwise you’re going to get very frustrated.

We have done a lot of research looking at what patients want, what providers want, what should really be the setup based on what we have available. Some of the basic goals for migraine prevention, first and foremost, improve quality of life. I really think that it encompasses so many things. If we put you on a medication, for example, and your migraine frequency comes down, but the quality of life is terrible because you’re having all these side effects, then we haven’t met the goal. We have not improved your quality of life, and so I really encourage people to think of quality of life as first and foremost. 

What are things you’re not doing now that you want to be able to do? Thinking about activities they want to get back into, things they want to do, not being anxious about an attack taking over, not being able to plan. 

So being reliable, I hear this a lot from my patients. I want to be a reliable friend, I want to be a reliable family member. I want to make dinner plans and know that I’m going to show up. And so this is a really tangible goal that we can work on when we’re looking at prevention. And if we know that maybe you’re partly there, but not all the way there, then I know, hey, I still have work to do on my side, and maybe you still have work to do as well.

The other thing that’s important is many times, by the time a person comes to see a health care provider for migraine, they are really struggling. They’ve been to the emergency room a few times. They’ve gone to urgent care. Their as-needed treatments aren’t working. So a big goal is that you can take care of this on your own. You don’t need to call me. You don’t need to go to urgent care. You don’t need to go to the emergency room. So we’re looking at that you’re reducing the use of health care. That actually sounds really funny, but it’s really important.

I always tell my patients, do you really want to have to rely on me forever? No, the point is to gain that independence back. And a good preventive, or several options if you’re on medication, and we put in other therapies on there, you should be independent. You should not need to rely on me to figure out what to do. So that’s another important goal, gaining independence back and not having to use emergency room and urgent care settings. So overall, we just want our patients feeling better, being more functional, not needing us as much, and not needing as many acute treatments.

O’Brien: Dr. Ailani, I think that might be one of my favorite answers I’ve ever heard doing this. Not joking, just reframing. Because I think a lot of times, especially when you’ve progressed so far into this disease state, and not everybody listening is there. But to reframe how we look at what these goals should be, it’s not necessarily you’re coming down from 20 attacks per month to 15. It’s not necessarily that. It’s getting back to being reliable. It’s getting back to having a decent quality of life. And it’s so great that you pointed out is your quality of life great if you have all these side effects? 

Ailani: Then you’re not really doing it. I think that is why we look a lot at patient-reported outcomes in clinical trials nowadays, really looking at what’s important to the patient, designing trials around that, but also taking that then to clinical practice.

If I know in a clinical trial I’m looking at satisfaction from a treatment, side effects, adverse events, then why shouldn’t I be doing that in practice as well? Because sure, I can get your frequency down, but if I make you unable to function, how is that doing anything for you? Sure, you don’t have a migraine, but you’re still in bed because you’re not walking well, or you’re not thinking properly, you’re not feeling good. It can be really tough sometimes when you find the right treatment, and it’s the one treatment that works, but it causes a lot of problems.

But I think when we even as clinicians reframe and realize, well, then that just isn’t the right treatment, that just doesn’t work, it doesn’t meet the goals. And I think that’s why it’s a lot more important to think of it that way than the number of days, the things insurance makes us fill out, which I don’t think matter as much. Because this is a fluctuating disease, and month to month your days are going to change. Things happen. Life happens. Frequency will go up. It will come down. And I don’t think that’s a great way to really follow the disease.

O’Brien: Let’s talk about who might be eligible for prevention options. And with that, there’s the eligibility criteria, but also who’s a good candidate. When might someone want to start thinking about prevention?

Ailani: Yeah, I think it’s really important you point out these two points. It’s who’s eligible, but who really can start treatment? And I think there’s differences there. Really, we look at eligibility for prevention. Anyone who has migraine who’s facing some sort of disability is a good, eligible candidate. Now, what does that disability mean? Does that mean I can’t go to work? No, it just means that for whatever reason, when you have a migraine attack, it makes you not function the way you want to function. So you’re having some disability.

That could mean you have a good acute treatment, but when you take the treatment, it makes you sleep all day. So you just lost a whole day of your life. It could mean that no acute treatment is working well for you. It could mean that even you have good acute treatment, but the attacks are happening so often that you’re now running out of medication or you’re worried about taking it too often. These are all examples of when it’s a good idea to start prevention. So you might be eligible, but you might be hesitant. But really start to think about starting prevention when you are getting nervous about how much as-needed medication you’re using or it’s not working well.

The average number of days a month, this generally happens, is around six days a month. Again, we have a lot of literature that backs that up. That’s somewhere between five to six attacks per month that a person is starting to face greater disability, missing more work days, using more healthcare resources like going to their doctors, and over-the-counter treatments aren’t working. And so that magic number is between five to six days a month. That doesn’t mean if you have two days a month, but every time you have an attack, your treatment doesn’t work, that prevention’s not right for you.

So again, focusing back on what am I not doing I want to be doing? Am I not achieving my goal? Then, that might be a good time to talk to your provider about starting prevention.

O’Brien: Can we talk a little bit about, overall, why prevention can be a really important aspect of migraine care? You know, oftentimes, we think about, again, just treating the attack as it happens, but prevention is another aspect to fit into that puzzle. Can you talk about why it matters?

Ailani: Yeah, I think this is another good point because a lot of times patients say, well, my as-needed treatment is working really well. Do I really need to do anything else? And my answer to that is, well, it really depends on how you feel. We know in the literature, again, looking at populations and following people over time, that about 40% of people are going to, at some point, have enough disability that starting a prevention is a good idea. But we also know in actual practice that most people are not on prevention. We’re really somewhere around 16 to 18% of people being on treatment.

We often like to say and push, oh, prevention is important because you’re going to change the way the disease works, and it won’t become as bad. But the truth is, what we are starting to understand about disease progression and prevention, we can’t really say that prevention will stop your disease. We don’t have a cure right now for migraine. What we can say is it’s very possible that good prevention can stop the progression of the disease. And a portion of patients who have two or three attacks per month will transform to becoming what we call chronic migraine, where they’re having headache most days with at least eight severe attacks per month.

What we really want to do with prevention, besides improve your quality of life, reduce the burden, not have to think about do I have my treatment on me or not because I am doing poorly quite often, is we’re trying to stop that progression from episodic to chronic migraine. We know that with chronic migraine, disability is higher, burden is higher, treatment takes longer to work, everything is more difficult. And so if we can stop people going from episodic to chronic, it’s very possible we’re stopping that disease progression.

What we’re starting to try to understand more in children is if we treat the disease really early, is it possible that some portion of kids treated young might not develop or really stop having migraine earlier? We don’t know this yet. Just putting out there is a very early idea. But it really goes to what’s happening in the brain when you’re having attacks? It is just creating a lot of garbage. And if we have less garbage, maybe you’ll have less attacks, and we won’t progress the disease.

O’Brien: There are loads of treatment options, both medication-wise, drug-free-wise, there’s strategies and interventions. Can you just give us kind of a high level – I almost kind of gave a summary there – but kind of a high level of what different prevention strategies look like?

Ailani: Prevention always starts with lifestyle modifications, and we’ll get more into that in a little bit. But we start with lifestyle modifications, and then we add to that. There’s behavioral strategies I mentioned before – biofeedback, relaxation therapy, cognitive behavioral therapy, and acupuncture. They kind of all fall under the behavioral biological strategies that can be employed. There’s neuromodulation devices that are not implanted, but they’re handheld devices you can use that can help reduce migraine frequency. There’s vitamin supplements that have some suggestive evidence that they can be effective in reducing migraine frequency.

And then, of course, we have several types of medication options. We have our more traditional options that are now what we call generic. They’re very inexpensive, easy to use, but they’re not so migraine specific. They’re a little bit broader in how they work and what they’re doing in the brain to make these changes. And sometimes they come with side effects. 

And then we have our very migraine-specific treatment options. These have come out in the last several years. They’re a lot more targeted in what is happening when you’re using them, and a lot more targeted to what’s happening in the disease process. So they come with very few to minimal side effects for most people, and they seem to be better tolerated, and patients tend to stay on them longer. Because, of course, if I can tolerate a treatment that’s specific to my disease and it works well, of course, I’ll stay on the treatment versus something that gives me a lot of side effects, and then you’re not meeting those goals that we talked about.

O’Brien: When we’re talking about prevention, is it a forever commitment? If I say I’m going on prevention, can I ever come off of it? Can I change them? Does it just depend on the person?

Ailani: I think it’s an important thing to consider going in. Do I need to be on this treatment forever? I will tell you first and foremost, we don’t have a lot of data about this question. And so a lot of it is based on how the patient is doing and what their questions and concerns are. 

The other big important factor when you’re trying for pregnancy, we will probably take you off a majority, if not all, of your treatment options. Neuromodulation, certain vitamin supplements, some people feel comfortable doing onabotulinumtoxin, which is Botox injections for chronic migraine while you’re trying for pregnancy and through pregnancy. But for the most part, these treatment options will stop during that time period. Another note on pregnancy, many women get better during pregnancy, usually by the second trimester. And for many women, if they are lactating after, there is a shift in their migraine frequency.

So don’t be concerned that I can’t have children because I’m going to be miserable the whole time. There’s actually a good chance you’ll feel better for quite a long period of time. And then we just start or readjust treatment after because things are going to change. Hormonally, you’re different. Your migraine frequency might change. They might feel different. And so kind of a reassessment of how things need to be at that time is important.

When it comes to someone who has episodes of migraines, we’re looking at anywhere from one attack a month or every few months to maybe eight attacks a month, give or take. These patients, I would say, that if they don’t want to be on treatment forever, that is a strong possibility that sometimes you’re going through a difficult time, and the frequency is upped a little bit, you don’t have a good acute treatment, and you need to be on prevention to kind of reverse things. You do well for a period of time. Usually, we say about six months based on the very limited information we have about how long it takes to kind of reverse the steps of migraine. If you’re doing really well and you’re having less than four attacks per month, we could stop the treatment for a period of time and see how you do.

The evidence we have about how people do when they stop prevention exists for topiramate, which is one of our older drug options for migraine prevention and exists for the CGRP monoclonal antibodies. And those are things like, erenumab, which is Aimovig; fremanezumab, which is Ajovy; and then galcanezumab, which is Emgality. There’s very little information on eptinezumab or Vyepti because not as many patients are on it. What we see is when you stop treatment for a three-to-six-month time period, you can actually continue to do well.

But then for some patients, migraine frequency starts to come back or increase. Now, if I tell a patient this, some people will be like, that’s fine, I’d love a six month to one year break, and some people are like, yeah, no thanks, I’m doing so well, I want to continue on my treatment and not take that chance. So I will say it’s a very individual conversation and approach, and something that should be discussed. And I’ll tell a patient, I’ll bring it up again, but if you tell me you don’t want to talk about this again until never, that’s fine. I’m putting that in your chart, and we will never talk about it again.

But my point here is, don’t feel discouraged talking to your healthcare provider about this. Don’t feel like you’re marked forever, you have to start this, and I don’t like it, I don’t want to be on it. Think back to those goals. If you’re meeting those goals, and you’re feeling really good on treatment, and you don’t want to stop it, right now there’s nothing to suggest that you have to stop it. But if you do want to take a break and see how you do, that’s absolutely fine as well.

O’Brien: And it kind of leads into our next question of, well, maybe people are hesitant to start in the first place. Going back to different treatment methods, maybe not necessarily the lifestyle strategies, but there are a host of reasons people might be hesitant. Cost, we’re looking at side effects, we’re looking at insurance coverage. Is something covered? Is it not covered? Do you have to go through step therapy to get to what you really want to do? Maybe people just don’t want to use medication. So when you’re having these conversations and patients are hesitant maybe to start prevention, what do you tell them?

Ailani: I think, first of all, the conversation when we’re talking about prevention, a lot of it is me listening to the patient, and that’s what it should be. You should be listening to what they’re saying to you, and if you as a patient don’t feel like your clinician is listening, then, unfortunately, as long as it takes to find someone, you might need to find someone else. But the listening part involves a lot of their stories. You know, what brought them in? Why’d they wait? Why did they decide to make the step to see a headache specialist? And all the time, it’s about missing out.

So if someone’s hesitant on prevention, which is about 90% of my patients, I rarely get someone who comes in and says, I want to take a medicine every day. I’m happy to try some side effects there. You know, it’s hard because they feel like there’s some magical thing we can do that is just going to fix everything without taking or trying, or we have the right fit. I tell you, I was told in medical school that day would come. I’m still holding on. I think we’re close with AI and data generating and large language models. I mean, there’s so much going into can we figure this out without putting people through trial and error? 

But until that day is here, I just tell my patients, I heard that you told me that you’re not making it at work, you’re worried about losing your job, you’re running out of acute treatment, you’re whatever it is they’re saying, missing their kids’ games, matches, not being present as a partner. There’s so many stories I hear. And there’s so many words that are important. And I tell them, this is what you just said to me. If I could offer you something to maybe make it better, would you like to try? And if they say not yet, that’s okay.

Arming them with information is the second most important part of my job. So, giving them information about the treatment options, telling them what a formulary is, and investigating what is their formulary, which I think most of us don’t know. And then, encouraging them to think about it. Come back next time, and we’ll talk some more. And I will tell you the one thing I hear over and over again, when a person does make the decision to start prevention, and it does work, is why did I wait so long?

O’Brien: Dr. Ailani, thank you so much for sharing all of your knowledge with me and our audience today. What a great conversation, help us understand the basics, and then some about migraine prevention.

Ailani: Well, thank you so much. It’s been my pleasure to be with you all today.

O’Brien: And that wraps up this episode of Spotlight on Migraine.

To our followers, thank you for listening. This podcast is made possible by supporters like you. You can make a tax-deductible donation today at migrainedisorders.org. 

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As a reminder, this is just part one of a two-part series on migraine prevention. In our next episode, we’ll take a deeper look into migraine prevention options available and talk about the importance of individualized preventive treatment.

I’m Molly O’Brien. We’ll see you next time.

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. AMD and the speaker do not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.