Headache Journal

A New Study Exposes the Gaps in Menstrual Migraine and Care

American Headache Society The Journal of Head and Face Pain Highlight

A new study in Headache: The Journal of Head and Face PainUnder Diagnosis and Impact of Menstrual Migraine in Real-World Clinical Practice: A Real-World Survey, led by Dr. Jessica Ailani, explores how menstrual migraine remains underrecognized and undertreated, despite being one of the most common and disabling migraine subtypes. The findings highlight significant gaps in diagnosis and preventive treatment, pointing to the need for greater physician awareness and proactive tracking strategies.

As Dr. Ailani emphasized in the interview, “We know menstrual migraine is a really large problem… women tend not to proactively bring it up. And so if you don't ask them about their menstrual cycle and migraine… they often won't discuss it.” This reinforces the study’s conclusion that clinicians must take an active role in history-taking and cycle tracking, ensuring that symptoms are identified early and patients receive timely, effective care.

Watch the full interview with Dr. Ailani, MD:

 

 

Headache publishes original clinical and basic research on head and face pain, aiming to advance understanding and care of headache medicine. This study adds real-world insight into how menstrual migraine is identified and often under-recognized by providers and patients alike.

In this cross-sectional study derived from the Adelphi Real-World Migraine Disease Specific Program, women aged 18–55 were surveyed alongside their physicians. Physicians estimated 39% of their patients experienced menstrual migraine, yet only 32% had received an official diagnosis. An additional 14% of women reported symptoms they believed were menstrual-related, but hadn’t met formal diagnostic criteria.

Menstrual migraine attacks were consistently rated more severe than non-menstrual attacks by both patients and clinicians, with noise identified as a significantly bothersome symptom. Despite this, preventive treatments were underutilized, and most patients relied on acute options like triptans and NSAIDs. Moreover, only about 4% received their diagnosis from a gynecologist, while primary care and headache specialists accounted for the bulk of diagnoses.

This study reveals a significant gap in the diagnosis and management of menstrual migraine, highlighting how both physicians and patients recognize the severity of menstrual migraine attacks, but preventive treatments remain underutilized. As Dr. Ailani emphasized, “Taking the time to just go through a history really thoroughly…and tracking cycles… the data is really important… understanding the disease process is probably more important than making a person feel bad…” This underscores the need for clinicians to engage in careful history-taking and cycle tracking, which can directly improve patient outcomes and close the gap in care.

The findings point to an urgent need for improved clinical awareness and better diagnostic practices, especially in primary care, where most patients are first seen. This research also underscores the unmet need for more preventive treatment options tailored to menstrual migraine, as well as the potential benefit of standardized headache and menstrual cycle calendars to aid patient-clinician communication.

Looking ahead, increased education and targeted research into menstrual migraine treatment will be critical for advancing care. As Dr. Ailani noted, ongoing clinical trials and future studies promise to deepen understanding and improve outcomes for this underserved patient population.

This study highlights the need for structured menstrual headache screening in routine care. The use of standardized headache–menstrual calendars could improve diagnosis and inform treatment planning. Collaborative approaches involving primary care, headache specialists, and gynecology may address underdiagnosis and regional care variations.

Dr. Ailani’s study underscores a critical, underserved area in headache medicine: menstrual migraine. Her work calls for greater provider awareness, improved tracking tools, and proactive dialogue, laying the foundation for better detection and more effective management strategies.

Read the Interview Transcript:

Dr. Rashmi Halker Singh

I am Rashmi Halker Singh. I'm the Deputy Editor of Headache. It's my pleasure to be joined today by Dr. Jessica Alani, who's one of the authors of the recent publication entitled Underdiagnosis and Impact of Menstrual Migraine in Real-World Clinical Practice: A Real World Survey. Welcome, Dr. Ailani. This is a really interesting survey. I'm so excited to talk to you about it.

Dr. Jessica Ailani, MD

Thank you so much. I'm so glad that you chose this. Well, you and Headache chose this to discuss today.

Dr. Rashmi Halker Singh

So first of all, can you just give us a quick overview of what led you and your colleagues to actually do this work?

Dr. Jessica Ailani, MD

Yeah, so menstrual migraine is the core of what this study is really about. Taking a look at the prevalence of menstrual migraine and how clinicians and patients really think about the disease process. We know menstrual migraine is a really large problem and I feel as a female headache specialist — I'm not putting down any of our male colleagues or anyone in the field that doesn't spend a lot of time thinking about this — but I feel like as someone who went into the field really just thinking about episodic and chronic migraine, I've come to realize that menstrual migraine is one of the under-discussed serious issues within our field and is something that women tend not to proactively bring up. And so if you don't ask them about their menstrual cycle and migraine and what the correlation is, they often won't discuss it.

And so our prevalence information is really scattered. The data shows that it's anywhere from 20 to 70% of women with migraine who have menstrual-related migraine. That's a really huge discrepancy, and why can't we get this confirmed? Why don't we have an exact number? I find that to be really interesting. Also, when you talk to patients in clinical practice, you'll notice that there are times that menses are a big trigger and there are times that it's not. So in order to make this diagnosis, you have to have two out of three menstrual cycles related to migraine. And I think that sometimes it's easy to do if a person's keeping a headache journal and tracking all of this very well, but in patients who don't do that, it can really be hard to pin that diagnosis down. And with fluctuations in hormones, especially as women get into their 40s and their cycles become really irregular, they might notice that sometimes they're more prone to having more severe attacks around their cycles and sometimes not so much.

And so they're really confused about what that association is and when they should be aggressive on treating it or not. And should the treatments be different? I think this is a huge area of unmet need. There are a lot of questions that we can answer, and I'm lucky that my co-authors all agreed with this, and there are a number of people who've really been doing some great work in this area. 

So this was exciting for me to get involved with. I was very appreciative that we were able to utilize the survey data information that exists. And this was a study taking a look at the Adelphi Real-World Migraine Disease Specific Program and it's basically a program where physicians and their patients have answered questions. So it's a retrospective look at cross-sectional survey data that was done in real time. So a patient might've seen their physician and the physician asked if they'd fill out survey information and the same patient is asked to fill out similar questions. I thought that was really cool, very unique and I didn't know this database existed, but I think that's such a cool way to collect data. 

And so for this specific survey, they were looking at survey responders who were women between 18 and 55 who did not mark off that they had stopped menstruating. So it seems a little backwards, but in the way the survey was conducted, it wasn't specific for menses so that it was just one way they could gather the data to find out were these women, probably still menstruating. And some of the questions that were asked about were, the physician was asked, do you think your patients have menstrual migraine? And then the patient was asked, have you been diagnosed by a physician with menstrual migraine? 

And then comparing what the data showed, looking at the rates and they were trying to look at primarily what portion of patients and physicians report menstrual migraine. Are the treatments given satisfying to the patients and satisfactory to the clinicians? Were there certain disease aspects that were different about menstrual migraine compared to regular migraine attacks? Because again, these women have menstrual-related migraine but also have other migraine attacks. So you could even see within the same individual how they were being treated and if they were satisfied with their different treatment options. And so that's really the background of the study itself.

Dr. Rashmi Halker Singh

I think that's really fascinating. I've been in clinic all day, so much of what you said I can resonate with from my own patient interactions just even today. This is such a common scenario, so much of what you just said and I agree with you, it's really an unmet area of patient care and also educations, we think about training the next generation of headache clinicians as well, and how do we approach those in terms of taking care of our patients. So tell me, what did you find, and did anything surprise you about all this data, too?

Dr. Jessica Ailani, MD

Yeah, so what we saw, first of all, in the physicians surveyed, they felt about 39% of the patients they were seeing had menstrual migraine, except their same patients that were surveyed only had the diagnosis rate at about 32%. So physicians were actually, this was surprising to me, overestimating the number of patients in their clinical practice that had menstrual migraine of interest, even though only 32% of the patients had received a diagnosis of menstrual migraine. An additional 14% of patients said that they felt that they had migraine associated with some of their menstrual cycles. So again, not meeting official diagnostic criteria, but they noted that there was an association and that just wasn't kind of picked up or caught. So that was one very fascinating point. 

The other was that patients and physicians both rated menstrual migraine attacks as being more severe. Both physicians and patients said they were very severe, but the patients’ rating of severity was higher than the clinicians. They also both felt that they were getting treatment, but there were a lot more acute treatment options that were cycled through and not as many patients cycled through preventive treatment for a disease process that both the physician and the patients rate as very severe and not well managed. 

It's interesting that preventive options were not necessarily offered as often and not as many preventive option choices were given to patients with menstrual migraine, even though compared to their cohort of non-menstrual migraine patients, they were around the same population type. These were patients that were surveyed in both Europe and the United States. They were mostly white women in that age range, those with menstrual migraine in this study, they did mix pure menstrual and menstrual related migraine together to get a larger cohort. So the patient population for menstrual migraine tended to run a little bit younger and that might be why we weren't seeing as many of them being offered or being on preventive treatment.

Another interesting factor, patients were rating that noise was one of their bothersome symptoms along with, of course, pain. Whereas in other studies we've seen nausea be the more associated severe symptom of menstrual migraine. So again, this survey just shows us a lot of information we don't know. There are probably a variety of symptoms that bother these patients and that it's probably very patient dependent and survey dependent who you're surveying. But again, just showing us that there's some difference that they feel between these attacks and their other attacks as well. 

So these were some of the findings I thought were very interesting. Patients and physicians weren't necessarily very satisfied with the treatment options they had and triptans were commonly prescribed for all patients, and NSAIDs were commonly combined with triptans more often for these patients with menstrual migraine. And so again, you're seeing that the physician is trying to come up with some way to treat this disease that's a little bit more aggressive in some ways, but really not meeting the needs that exist.

Another interesting fact, something that we see commonly, I think with all studies related to migraine, is that most of these patients are being seen in primary care practice and that's where the diagnosis is being made. About 50% of patients risk being seen by primary care. But what I found was interesting is when they were seeing a neurologist, a majority of them were actually seeing a headache specialist. And this was true regardless of menstrual or non-menstrual migraine, more of the menstrual migraine patients were being seen by a headache specialist than a general neurologist, but the rates of seeing a headache specialist were somewhere in the 20%, 23% range, so much more than general neurology, which was running around 12%. Again, this was a study not just in the U.S.. So I think that's important to realize that factors on who somebody is going to see might vary from country to country, but I found that to be very interesting and it really helps to understand where to target education in that primary care level.

Only about 4% of patients were getting this diagnosis from gynecology. And I think again, very important because where I practice in my region, a lot of my patients are coming in after being told they might have this trouble by their gynecologists. So I think it's region-specific. I think it's education-specific and it also might be personal interest. I have a lot of gynecologists that have migraines, so I think they're more interested in this and that just is the region that we're seeing and I think it's important to notice that studies are studies, but what we see locally might be very varied.

Dr. Rashmi Halker Singh

Wow, that's a lot. I mean, I think the story was able to bring a lot of valuable information to this, to the headache medicine literature, and really add to this conversation where we really don't have a whole lot of information. As you think about this work, which I think is so valuable, what do you hope is the impact?

Dr. Jessica Ailani, MD

Well, I hope that someone reading this thinks a little bit more about how they're making this diagnosis in clinical practice and how often they're talking to their patients about it. I will say as a practicing clinician, I wish I could tell you I'm 100% awesome, that every time I see a patient I ask them about how their migraine is related to their menstrual cycle. But truthfully, we tend to do this most at that initial visit. And then sometimes it might come up proactively if a patient says something's changed — I'm noticing more attacks. They tend to come in a cluster and that's when I might re-ask about correlation with their cycles. I think this is part of a variety of things that have occurred over the last several months that have really made me think, well, all my colleagues that really tell me that headache calendars are super important for patients to keep and my patients who tell me it's really hard to do that and depressing.

I'm starting to realize that the calendars are more and more important if we really want patients to understand their disease process. Our first author on this study, Gisela Terwindt, who's from France, has this amazing headache calendar that's given to every patient that comes into our headache clinic. And so she's got a wealth of data about migraine and about menstrual migraine. And anytime I speak to her, it just is a great reminder of, I can harp on how it's important for patients to feel comfortable and calendar when they feel like it and not feel bad about their disease, but the data is really important and understanding the disease process is probably more important than making a person feel bad if they're having too frequent attacks. And I think something this has just brought to light again, that calendaring and tracking in some way is important and that includes tracking cycles, menstrual cycles, ovulation cycles.

I've had many people tell me before that they feel there's a link with ovulation, but we just don't have enough data there, probably because we're not tracking this and life events. These kinds of things should be put on your calendar because when you come to see your clinician three, four months later, had a major life event two months ago and there was a blip in your headache frequency, it's really important we have that discussion. And we know that major life events can cause stress and changes in the brain and then can trigger more attacks. And I think dialoguing about that is important as well. So this just has made me come to terms a little bit more with trying to make my patients keep calendars and maybe part of what we want to do in the future is create a standardized calendar for our patients and clinic that we start to hand out for free because I think her idea is really fantastic and if you give them a calendar that they can link to their phone, maybe they will use it more often and that will help with future research.

Dr. Rashmi Halker Singh

Well, I think you're pretty awesome and I think that's a great idea as well.

Dr. Jessica Ailani, MD

Thank you.

Dr. Rashmi Halker Singh

Anything else that you want to add?

Dr. Jessica Ailani, MD

I think that this is an underserved area. This is just one study. We're hopeful that we can have other information in the future and we've looked at other databases. I really would like to have a better understanding and a more concrete pin on what is that frequency of menstrual migraine. If we're at 20 to 70 and this study shows about 38 to 40%, we're getting closer to having an understanding. I'd also love to see more studies being done looking at treatment for menstrual migraine. And I know that, if you look on clinicaltrials.gov, you'll see that they're starting to be a pileup of studies there and so I’m really excited to see that work being done. I think for our patients who've been struggling with this for a long time without a great answer, it's really an exciting time for them.

Dr. Rashmi Halker Singh

Awesome. Well, thank you so much for this work and thanks for talking with me today.

Dr. Jessica Ailani, MD

Thank you so much.