S5 E11: Migraine and ADHD, part two

Migraine and ADHD, part two

Series 5, episode 11

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Transcript

00:00:00 Welcome to the Heads Up podcast, brought to you by the National Migraine Centre, the only UK charity treating headache and migraine. Visit our website to book your appointment with a world-class headache doctor, wherever you are in the UK. There is no need for a referral. You can refer yourself. Our headache specialist doctors are looking forward to helping you soon.
00:00:33 Dr Katy Munro
Hi everybody and welcome to this part of the Heads Up podcast and we’re talking today about migraine and ADD or ADHD and we’ll talk a little bit about the difference with Doctor Gilly Kahn, who is a psychologist in the States. And Gilly contacted me because she has quite an interest in ADD and I’ll let her tell you more about it. So do you want to introduce yourself, Gilly?
00:01:01 Dr Gilly Kahn
Yeah, of course. Oh, my God. I’m so excited to be participating in your podcast, Katy. And I just remember, like initially I started with this really intense interest in ADHD and actually pretty soon into doing my research, I was just struck by the realisation that migraine and ADHD go hand in hand so often. Just through the reading that I was doing and just my own research, because no one really taught that to me, including healthcare professionals that I went to for my own ADHD and migraine.
00:01:47 Dr Katy Munro
Yeah. So I think as often happens that those of us that specialise in certain areas have an interest because of our own personal experience. So tell me about your ADD/ADHD diagnosis, but also about your migraine history, because I think you’ve also had migraine yourself, is that right?
00:02:12 Dr Gilly Kahn
Yes. Yeah. So right now it’s all very complicated because with both conditions, I mean, there’s just so much overlap and we’ll get into that. But females have just flown under the radar in a very similar way, but I think with ADHDD now it’s becoming more apparent as to what the symptoms really look like in girls and women, so more women in their thirties plus are getting diagnosed now, and they’re referred to as like a lost generation. And I’m one of that crew who had ADHD when I was younger, but it just wasn’t detected because the way ADHD has been understood until now was very kind of narrow and male-focused, which is very similar to my brain.
But my migraines were my—Migraine. Right? I need to change the way that I speak too. My history of migraine was a lot more, I guess, obvious. You know, there’s, like, physical pounding pain. It’s kind of hard to ignore, but I have a genetic, like a family history. And they started when I was eighteen. And I remember, throughout college and they just continued for, you know, until today and because they were just so debilitating I was really, really depressed. And I mean, sometimes when I think about it, I just start tearing up at how much pain it really was. I didn’t go to treat my migraines for a very, very, very long time because I would just tell myself, like, oh, it’s OK or people are able to treat this with Excedrin or Aleve. I should be able to do that too. Or I was just very busy, you know, with school. And so it took me a very long time. I think I went maybe mid-twenties to a neurologist for the first time.
00:04:30 Dr Katy Munro
That’s really interesting. So we hear this a lot that people say, well, I never really asked until it got really bad. You know, I didn’t seek any help and I didn’t recognise the need. And even when they have a family history of migraine, then they still kind of don’t necessarily realise how much we can do to help these days.
So was it helpful to go and see that neurologist? Did you get good advice?
00:04:56 Dr Gilly Kahn
Yes and no. So I think it’s also just the tendency of women to just deal with things. We’ll just say, I’ll just deal with it, or it’s not a big deal, and when you have a combo of ADHD and migraine, you put everything off.
00:05:18 Dr Katy Munro
Yeah, yeah.
00:05:19 Dr Gilly Kahn
That’s what ADHD is, it’s disorganised, you know? And you put your all into one thing. So for me it was school. You know, it’s like I don’t have time for doctor’s appointments. I will just power through it. And yeah, in terms of was it helpful looking back? Not so much. And it’s a very, I think, maddening and disappointing topic because I was prescribed triptan off of that, which is typical. And I was also prescribed propranolol, which is a beta blocker to prevent migraines. Propenol did nothing for me. I know that in psychology we prescribe it sometimes for performance anxiety, so I’ve seen teens who take it and they say, Oh yeah, it helps me with my anxiety, never understood how. Like maybe it’s just like the specific, you know, subtype or, you know, the way that my migraine attacks are characterised, but just, he kept increasing the dose and it did nothing. Nothing. Nothing.
But triptans, it was like to me, I was thinking, oh, my God, my life is completely changed. Suddenly I can be migraine-free.
00:06:37 Dr Katy Munro
Uh-huh.
00:06:40 Dr Gilly Kahn
But with, you know, the caveat of having to feel loopy. And the first time I listened to a book, an audible book on migraine, it was Maria Konnikova’s short audio book called Migraine. And in it she uses that exact word, loopy. And I think. And she starts describing exactly, like, just bizarre symptoms that I knew I felt. But I just thought, no, this can’t be like a common thing like language, expressive language difficulties. And I was like, oh. That’s a thing that is definitely true for me, but also it’s associated with ADHD.
00:07:33 Dr Katy Munro
Ah ,that’s interesting. So at that stage, were you having those loopy feelings because of the migraine or because of the medication for the migraine?
00:07:42 Dr Gilly Kahn
It was the triptan. All the way. Triptans. Yeah. I mean, I think it was like a catch 22 because I could either have a migraine. And I remember I was working in a school for autistic kids and a lot of them would burst out of the classroom. And I was so afraid that I was not going to be in the right mind, either on a triptan or with a migraine, to catch them because my processing speed was so slow.
00:08:12 Dr Katy Munro
Yeah.
00:08:13 Dr Gilly Kahn
And also it was hard for me to explain too. I would tell my neurologist that I was like, I think it affects my mood. Like it made me very depressed and groggy. So it was just, it was. Yeah. Not good. But then I listened to Doctor Holland’s talk on your podcast. And he referenced an article that said that triptans kind of have different effects in men versus women. So I looked it up and I found the article and in lieu for the article, this was just crazy, I mean like mind-blowing to me.
00:08:56
Yeah.
00:08:57 Dr Gilly Kahn
In looking for the article I was searching “triptan sex differences” or “triptan gender differences”, “triptans women”. And I was just like, why is this so hard? And so then I found the actual article and I have the numbers here and I just have to share them because they’re just, oh, my God.
OK, so it was a review that came out in 2021, and they found that out of 1188 publications on clinical trials with triptans, 244 included just sex-related search terms like 244 out of… I don’t know if you’ve seen this article, but wait. So that’s just sex-related search terms. And then if you’re looking for medical trials that look for sex differences between males and females, 19.
00:09:58 Dr Katy Munro
Right.
00:10:00 Dr Gilly Kahn
Like, 19.
00:10:02 Dr Katy Munro
That’s such a big issue, I think, isn’t it? The research around all sorts of topics seems to be very based around males and what happens to men and not enough looking at is there a difference between men and women? I think we’re recognising that more and more. That doesn’t mean that there’s more research into both those areas, but I think people are more conscious of that now, aren’t they?
And am I right in thinking, there are sort of subsets. Some people have ADHD, as in a very much more with the H, the hyperactivity and the jumping about and the running up and down. But an awful lot of people don’t necessarily exhibit those sort of behaviours. They tend to be more lack of focus, lack of concentration or hyperfocus. And other things like emotional dysregulation, where they don’t deal very well with upsets in their lives or whichever. Can you say a bit more about that?
00:10:59 Dr Gilly Kahn
Yeah. So just like with migraine and ADHD, I think we are growing and learning more and more about how to categorise different, I guess, lumps of symptoms. I’m trying to think about how to best describe it because there’s right now the way that ADHD is diagnosed is you can be diagnosed with one of three different presentations. And I say presentations because it used to be considered types. Like subtypes, but it’s not anymore. Now it’s presentations and the difference in vernacular basically is that presentations can change over time. So if you’re diagnosed with a certain presentation of ADHD it doesn’t mean that you have that for the rest of your life. It could change into a different presentation as you get older. One day you could have this, the next day you can have that. It gives it a lot more flexibility.
00:12:01 Dr Katy Munro
Right.
00:12:12 Dr Gilly Kahn
And so then the question is, first of all, is it misleading to include these little different categories, would it be better conceptualised on a continuum?
00:12:27 Dr Katy Munro
Yeah. And do you think that makes a difference to how quickly people get diagnosed? Because if they’re presenting in one way and then they maybe change as they get older and other life events happen, do you think then that sometimes it becomes more obvious? We can see now that you’re getting symptoms of ADHD or is it just that we need to have our radar a bit more highly tuned into anybody that presents with difficulties in their lives?
00:13:02 Dr Gilly Kahn
Yeah, I think that’s a really good question and it all goes back to sex differences. And the reason for that is because the criteria in the Diagnostic and Statistical Manual, the Fifth Edition today, that this version came out in 2013. But they are based on mostly boys. Mostly samples of boys and they include observable criteria, so the items on the list if you read them, they are clearly for children. I mean, there’s some clarifications like in parentheses that specifies here’s what it would look like in an adult, but it’s not based on any data which is just like you know, it included — Russ Barkley. Doctor Russell Barkley explains this also on his YouTube channel. I just love listening to his lectures and literature reviews. So because they were based on boys and because this is just a theme throughout, like healthcare research, you know, with animals, with humans, within any area. It’s hard to extrapolate, to say, oh, well, girls are more inattentive, because girls were not included to an adequate degree in the original sample size, in the original sample, so that’s why it makes it complicated for me.
00:14:39 Dr Katy Munro
Yeah.
00:14:47 Dr Gilly Kahn
And I think a lot of ADHD specialists like in females to paint the picture of like a prototypical girl with ADHD because we’ve hit a point where we probably need to go back to the drawing board and just, you know — and people are doing this — and just ask girls and women about their symptoms because in females, just like with migraine, there’s a lot of masking and trying to push through and there’s social expectations. And so it’s a lot more complicated and nuanced, and the criteria right now are just very limiting for a lot of reasons.
00:15:29 Dr Katy Munro
I was looking into the studies about the link between ADD/ADHD and migraine and there are quite a lot of overlapping features, aren’t there, that people have highlighted so both of them are genetic, have a genetic link. And with both it seems to be something to do with dopamine, the neurochemical in the brain.
00:15:49 Dr Gilly Kahn
Oh yeah.
00:15:50 Dr Katy Munro
Very much to do with that.
00:15:53 Dr Gilly Kahn
Right.
00:15:53 Dr Katy Munro
Both of them impact hugely on people’s lives, work lives, school lives and social lives. So I think it is something. Certainly in our clinic at the National Migraine Centre, we are very aware that we see a lot of people who say, oh yes, and I have been diagnosed with ADHD. And I think having that knowledge that they’re so linked is very helpful when you’re talking to people about the difficulties they’re facing.
00:16:21 Dr Gilly Kahn
Yeah, yeah, no, it is really helpful. And also that’s why I think, you know, doing stuff like this, like having a podcast episode like this or contributing to, you know, an article or something is just so important because I feel like no one knows. Like any time I mention this to anyone who’s not a specialist, or even people who are specialists, like they don’t even know there’s a connection and there’s such a high overlap. I think it’s like 35%.
00:16:55 Dr Katy Munro
Yeah, there are some studies that looked at quite large numbers of people. I think there’s a Danish study, I don’t know if you’ve seen that one and it looked at about nearly two-thousand people. And found there was definitely a link between ADD and ADHD and migraine, trying to find the figures as I’m scrolling, but interestingly, they found that it was more those two things that are carrying together was more common in the sort of fortieth decade and from age fifty-two to fifty-three, rather than the younger age group. So the seventeen to twenty-nine year old age group didn’t seem to have as much linking as older people, but I was also interested to see that they found that it was more common in people who are getting migraine with visual disturbances, so migraine with aura, are more likely to also have a comorbidity of ADD/ADHD. So yeah, I think what I find in talking to experts and people like yourself on this podcast is we always end up going, well, we need more research, we need more research. And of course in both these areas there isn’t enough funding of research to look at those links I think. Would you say that that’s the case in the States as well?
00:18:23 Dr Gilly Kahn
Oh yeah, 100%. But I also think it’s a matter of where is the money going? I think that other areas are very important to study, but for example, I mean there is a significant amount of funding going toward depression research, which is so important. But then you know ADHD in females is really like I remember there was a drastic difference in in the funding. So with the stimulant shortage happening here and then with just concerns about stimulants maybe becoming like the opioid crisis, which they are not. I strongly come from the camp of like, no, and I feel like it’s not even a camp. It’s just facts. Like, it’s not even comparable. But you know the media likes to just, I don’t know, glorify any or twist any finding to make it seem like stimulants could be dangerous, and they aren’t if they’re used as prescribed. If anything, having ADHD and not taking the stimulant is dangerous. You know, on average people with ADHD who are not treated live thirteen years less than people who don’t have ADHD. And that’s because you’re impulsive, you’re going to get into a car accidents. Your health is bad. They have sleep issues. I mean, migraines. And so, so many other challenges that really slow them down and just affect their lives.
00:20:19 Dr Katy Munro
Yeah. I think that shortage of stimulants is a global problem, isn’t it? We’re certainly experiencing that here in the UK. You know, we’re hearing on the news only the other day of people saying, you know, I’m about to do my university final exams and I am so worried, I’m having to ration myself on my ADHD treatments. But I think that’s another thing that migraine and ADHD have in common is the stigma. You know, the stigma of migraine really is a barrier to good care, partly from people not wanting to say that they’ve got migraine, partly from people not understanding when they do tell employers or colleagues or friends even that they have migraine then then it’s not very well understood.
And I think that the same is a bit with ADHD, although the attitude is slightly different, maybe, that I’m certainly aware that there’s some school of thought that says, oh gosh, you know, it’s just a trendy diagnosis. Everybody’s getting these days. And I think it’s really hard when stigma is so embedded in society.
00:21:27 Dr Gilly Kahn
Yes. Yep. And honestly, there’s no worse feeling to I think, no, deep down you’re really struggling with something and then someone tells you it’s trendy.
00:21:40 Dr Katy Munro
Yeah. Yes, it’s awful.
00:21:45 Dr Gilly Kahn
It’s like having a migraine attack is honestly… like actually, I woke up with one this morning and the truth is that so I take agipant—agepant? I don’t even know whether.
00:21:45 Dr Katy Munro
Atogepant. Yeah, yeah, we have it now.
00:22:00 Dr Gilly Kahn
Yeah, I take it.
00:22:01 Dr Katy Munro
We have it. Since last week.
00:22:04 Dr Gilly Kahn
Oh, you do? OK, good. I’m very happy. I’m very happy for you guys because it 100% has changed my life. This is the medication that has helped me and that’s why I went down the rabbit hole of looking up CGRP. Because I was like, why is this helping me? Whereas the triptan, I had all of these side effects and sex differences. I think that is the reason because this review that I mentioned before basically found, sorry, I feel like I do loopity loops.
00:22:36 Dr Katy Munro
That’s fine.
00:22:38 Dr Gilly Kahn
But the review basically found that females had so many more side effects than males. So triptans are much better for males. And then what makes it worse I think in my opinion is that females needed more of the medication, so they took more pills, which I definitely found myself doing because I was like, OK, I took it, twenty-four hours later migraine is still here, here’s another one. But then if you take too many then you get rebound headaches.
00:23:13 Dr Katy Munro
Yeah, that’s a big problem.
00:23:13 Dr Gilly Kahn
Yeah. And just you need more drugs and if you’re worried about people taking drugs, then maybe look into right, like, migraine medication because women need to take more and more.
00:23:25 Dr Katy Munro
Yeah.
00:23:30 Dr Gilly Kahn
In order for their migraine attacks to be relieved, especially if it’s hormonal.
00:23:33 Dr Katy Munro
Yeah. So I was just going to say to you. Shall we talk about women and hormones and ADHD and migraine because again, there’s such an overlap of all of these things. So we know that migraine in perimenopause can really kick off. And when there’s fluctuations of oestrogen, we know that oestrogen and ADHD, there’s some sort of implication. You recently wrote an article for ADDitude magazine. Did I say it right? ADDitude. Yeah. So do you want to say a bit about that as well? Because I think that’s such a common age group that that we see, anybody in their forties and fifties who’s female going through this real time of turmoil, internal turmoil, but also sometimes life turmoil because you know you can be changing relationships, changing jobs, with elderly parents or with teenage kids, and it can all kick off, can’t it?
00:24:35 Dr Gilly Kahn
Yeah. So we were talking about the ADHD criteria before, you know. So it’s like, oh, funny you should ask. So for a lot of the criteria in the DSM, there’s a cut-off age where you say, oh well, the person must have been this age or younger than this age when the symptoms started. Especially when it’s a neurodevelopmental disorder. Or the person must be at least ten years of age or whatever to be diagnosed. And so for ADHD, it’s twelve and it used to be younger than that. And the reason they brought it up is because of girls. They were trying to generalise the criteria more to girls. But the problem with that is that a lot of girls get their periods at around twelve. So before that, their symptoms, if they have ADHD, may not be so obvious, because ADHD symptoms actually get worse when your oestrogen levels decrease. And right before your first period then your oestrogen levels start to plummet, and your hormones start to go on their fun little rollercoaster rides and that’s when symptoms become more obvious. So, requiring symptoms to be apparent before age twelve may not be so helpful in detecting ADHD and females.
00:26:09 Dr Katy Munro
Yeah.
00:26:10 Dr Gilly Kahn
And what’s so, so fascinating to me too. Because I was like, OK, there’s a connection between migraine and ADHD. But really, what is the connection? What is the neurological connection between the two? And it turns out that CGRP, like the neuropeptide that is targeted by gepants, that it tends to like, I don’t know how to explain it, but like, hang out in dopamine receptor sites. Yeah, like it’s very much. Is that true or am I explaining that well?
00:26:55 Dr Katy Munro
I mean, I haven’t heard put like that quite the same way. It’s just like every time we talk about separate conditions, I have to kind of remind myself and sometimes the people I’m talking to that the brain is not sectioned up into small areas. “That’s a depression bit and that’s the anxiety bit and that’s the ADHD bit and that’s the oestrogen hormone-related bit. And that’s the migraine bit.” Because it’s all these interconnected neuro chemicals that interact with each other in quite a complex way.
I think that’s why it’s so difficult when we are discussing with patients about the right way forward to help them manage their migraine or their ADHD or even their depression or their hormones. There’s not one easy answer. We can’t say we’ll just have this because this might not work for that person and that person be perfect for this other person over here. So it is frustrating, I think, for people who have this comorbidities, overlapping conditions of trying to find the right one. But I think we’re beginning to learn a lot more about the neurochemistry in the brain and I was at King’s College in London last week looking around and listening to the researchers there, and they’re talking about the kind of neurochemicals that they’re exploring that aren’t CGRP, that are things like PACAP, which is, don’t ask me what PACAP stands for because I can’t remember.
00:28:25 Dr Gilly Kahn
Yeah.
00:28:29 Dr Katy Munro
These are the things that they’re finding out can be implicated in some of the pathways and some of them overlap with sleep disorders as well.
00:28:37 Dr Gilly Kahn
Well, yes, the hypothalamus, yeah.
00:28:47 Dr Katy Munro
Absolutely. Yeah. So I think it is an area. So I think what the message from us, it always is at the National Migraine Centre is, don’t give up trying to find a solution for you because there are a lot of new drugs coming through. There are a lot of other non-medication strategies that you can use and that might be something like stress management, things with meditation or breath work or it might be neuromodulation devices. I think you have a lot more neuromodulation devices in the States than we have over here. So yeah, we’re a bit jealous of all the things that you get before us. But it’s such a changing world, I think for both ADHD and for migraine that’s quite exciting and hopeful. But yeah, we need to get women in there in the research, definitely.
00:29:36 Dr Gilly Kahn
Yeah, I guess the bottom line is that there is just a lot of physiological overlap between the two. And I think the physiological overlap has a lot to do with just basic homeostasis.
00:29:51 Dr Katy Munro
Yeah. Are there any sort of top tips that you’d like to give? I always hate it when people ask me this but I’m going to ask you anyway, Gilly. So, if somebody’s listening to the podcast and they think, hang on a minute, I need to find out more about this. I might have — I know I have migraine, but I’ve never even thought about whether or not I might have ADHD. How would you advise them to go about learning more about it?
00:30:21 Dr Gilly Kahn
OK, so my first recommendation is going to seem biased, because I blog for them, but I only blog for them because initially I learned information through them, but I would look up ADDitude magazine.
00:30:35 Dr Katy Munro
Yeah.
00:30:36 Dr Gilly Kahn
Because they just have boatloads of resources, including specialists that you can find and narrow down by area, they have everything. So, and it’s very, very easy to understand. So, they have, you know, information that they explain and articles just summarising the latest research and treatment options and then they have more academic resources. They have a podcast. So if you want to listen to an episode about something specific, they have one on there about ADHD and migraine, and that’s one of the ways that I learned about the link. And yes, so I would start with that.
The other book that I found really helpful is ADHD 2.0. by John Ratey and Ned Hallowell. It’s a recent explanation of ADHD. And then the other two psychologists who specialise in ADHD in females who I think have amazing work are Doctor Ellen Littman and Doctor Kathleen Nadeau. So they’ve appeared on several podcast episodes. They co-authored the book Understanding Girls with ADHD.
00:32:20 Dr Katy Munro
Perfect. I’ll get you to send me those names to spell them correctly and we’ll put them in the blurb of the podcast. I think it’s really useful. We know people want to have a deeper dive into this subject that they are directed to some useful resources, so thank you for that.
00:32:36 Dr Gilly Kahn
Yeah, absolutely.
00:32:37 Dr Katy Munro
Now I think that’s all been fine. You know, the treatments for ADHD are very much needing somebody to have an individual plan on them with a specialist in ADHD. So I don’t think we can go into that here in detail on the podcast. And that would be something for people to seek out advice. Of course, things are a little bit different in the US than they are in the UK. We have a very different system over here and it’s rather limping along at the moment, in particular with any neurological condition and also with ADHD diagnosis and management, because of waiting list times. But if people go and have a chat with their GP in the UK, they can learn about what pathways there are to getting better health. And if they have migraine and they’re in the UK, they can refer themselves to us at the National Migraine Centre without needing to go through their GP, which I always like to say because sometimes people say, well, I’ve never heard of you and we’ve been around for forty years now as a charity, so we do like to fly the flag and make sure that people know that we’re there.
Well, thank you so much, Gilly, by taking your time out of your busy afternoon and my evening, we did find the times confusing, but we made it and that’s really great. All right. Thank you so much.