A National Migraine Centre Heads Up Podcast transcript
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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.
00:00:36 Dr Katy Munro
Hi everybody and welcome to this episode of our Heads Up podcast and today I’m talking about the most fascinating subject with Doctor Helen Read, who is a specialist in this area. So in our clinic at the National Migraine Centre, we see many patients who also have a diagnosis of ADHD and we’ll talk about what ADHD is and what it stands for. But in my understanding it’s called attention deficit hyperactivity disorder. But there are some things that we need to discuss that clarify exactly what that is.
Now there are known to be links between migraine and ADHD, and so we’re going to be talking about why that is and how that can impact on people’s lives. So thank you very much, Helen, for coming on the podcast as my guest today. And would you like to introduce yourself, a little bit of your background on how you got interested in this area?
00:01:30 Dr Helen Read
Absolutely. Well, Katy, thank you so much for asking me on to the podcast. And it really is a pleasure and an honour to be here. So my background, well, I’m a consultant psychiatrist. And before ADHD, I had a long-standing special interest in psychotherapy and women’s mental health. And I worked for the NHS for thirty years before leaving in 2020 to focus on my private ADHD practice, which is called ADHD Consultancy. And it’s kept me very busy ever since.
And my interest in ADHD and neurodivergence generally actually started when my eldest son was diagnosed with autism in 2000. At that time he was three. Then that was, of course, devastating. But, spoiler alert, he is now twenty-six and an exceptionally fine young man, OK, he’s now twenty-six and an exceptionally fine young man who works as a lawyer.
Along the way while immersing myself in autism and neurodivergence, I realised that while we all love the NHS, of course there were many things my son needed which were not available easily, and a lot they just didn’t know. The single most important thing that I did for my son was to insist on a co-morbid ADHD diagnosis when he was eleven, and this enabled him to access stimulant medication and that meant that he could listen and process in the classroom. That one little pill made more difference to him and his life prospects than all the social skills groups, school gate schmoozing, extra classes, the whole shebang, all of it put together by a large margin.
00:03:16 Dr Katy Munro
Yeah.
00:03:17 Dr Helen Read
The effect on auditory processing is quite unknown, I think really. And yet it’s huge.
00:03:23 Dr Katy Munro
Yeah, yeah. And these two things. Autism, autistic spectrum disorder, and ADHD are all part of that kind of general term that we use, neurodiversity. And I think there’s more and more being recognised and we certainly see a lot of people who have either a spectrum disorder, you know, autistic spectrum disorder diagnosis, or ADHD, or both, and who also have migraine attacks.
00:03:46 Dr Helen Read
Yeah.
00:03:53 Dr Katy Munro
So can you just explain what your understanding of ADHD — or is it ADD because I’ve had conflicting, you know, opinions about which one is the more appropriate to use.
00:04:04 Dr Helen Read
Yeah, well, they’re both appropriate is the answer. I think it’s perhaps more our American colleagues who might say ADDD — rather, sorry, that’s too many Ds – ADD. While we might more say ADHD, which is either inattentive or it might be hyperactive, or it might be combined types. So I think both of them are right and there’s no issue really with it.
And the thing about it is I think is that some people say there are three types of ADHD. They say that we have inattentive ADHD or we could have hyperactive only ADHD and we could have combined ADHD which is both of them. And I personally am not in full agreement with that. Firstly, I have personally never seen anybody with only hyperactive ADHD. I’ve certainly seen people who think they have hyperactive only ADHD, but I have always found in those cases that those people are just so hyperactive that they’re missing a lot of stuff and they don’t even realise they’re missing it, so my view of ADHD is that the core of it is inattentiveness. You know, and all of us with ADHD and then I should say I do have ADHD myself and I now have three boys and they all have ADHD and ASD as well. And I’d say I’m somewhere on the autistic spectrum, but not enough for a diagnosis. You know, now that’s the case, a lot of my patients are the same.
But I think that inattentiveness is the big and main thing of ADHD and the difficulty with what we call executive functioning, which is basically the buffer function of your brain. Like the thing that if you don’t have ADHD reminds you, oh, this is what we’re doing today. Let’s pack our bag, let’s iron our uniform, let’s kind of look up the train timetable and leave the house on time. All these things seem so easy to people that don’t have ADHD. And yet it can be a real struggle for people that do have ADHD, and it’s quite difficult to understand because one of the really fundamental things about the ADHD brain, and I think this applies to all neurodivergent brains actually, is that it has two settings.
So we call — it’s a terrible name. ADHD is a terrible, terrible name because actually people with ADHD generally can focus extremely well, but it’s just going to always be on the wrong thing until the last minute when classically an ADHD brain will spring to life and suddenly will magically be able to focus on all these things. And this is the reason why ADHD people pull all-nighters before exams and before deadlines and things of that kind. You know it isn’t generally because they don’t want to be sensible like everyone else and get on with it and have it done in good time. They do. They’re tormented, but they just can’t start, so they can’t start until they get that last-minute, panic-based hyperfocus which shoots their brain into the place where their processing works, and they have plenty of dopamine, and now we can do it. It’s like it’s unlocked. Before that we can hyperfocus very well, but it will always be on the wrong thing which is procrastination. Yeah. So that’s a very poor thing of ADHD, which a lot of people don’t understand.
00:07:31 Dr Katy Munro
So that would imply then that people with ADHD would often be very much kind of deadline-focused people very much, possibly missing deadlines, late to things.
00:07:54 Dr Helen Read
Oh gosh, yes.
00:07:55 Dr Katy Munro
And the implications of that are huge. If you’re at school or even as an adult in a workplace, that really must impact on people’s lives.
00:07:53 Dr Helen Read
It’s huge. I mean, a) it’s very stressful because I think I have over a thousand people in my clinic now. So that’s a lot of data, right? And I don’t think any of those people don’t care that they’re late. You know, it isn’t, you know, and of course people often say to us, don’t they? “Well, if you cared, you’d make that small adjustment, wouldn’t you? You’d be early.” And you know, it totally looks like that, doesn’t it? But it isn’t that because we do care. There may be someone out there who doesn’t care, but on the whole we actually do care, but it’s in a way, in a very paradoxical way, the more we care, the harder it is to get there on time and the more pressure we feel, the more we’re going to just lose fifteen minutes or suddenly spring into hyperfocus but tidy up the hall instead of leaving the house and catching the train. These things are an everyday life to people with ADHD and when you’re treated, when you understand the ADHD, you can ride the wave of joy and say, well, isn’t it great that I can tidy my hall now and actually that’s fine. And I’ve still got quite enough time to run for the train or whatever. But when you are overwhelmed, exhausted and totally not understanding why your brain does these things then obviously it adds to the stress of life. So yeah, we feel bad. They feel bad, we lose our jobs. Everyone thinks we have a bad attitude. And the whole thing becomes a vicious cycle.
00:09:17 Dr Katy Munro
And relationships I guess are impacted, if people are thinking right, you’re never on time, you don’t care about me or you don’t care about your standard of work because you’re leaving it to the very last minute. And I asked you to give it to me last week or whatever.
00:09:32 Dr Helen Read
100% absolutely.
00:09:35 Dr Katy Munro
It sounds exhausting, Helen.
00:09:36 Dr Helen Read
Yes, it’s absolutely shattering. As I always say to my patients in my clinic, I don’t chuck someone out for not being what I call high-functioning, but perhaps it’s to do with the fact that it’s a private clinic. The people that come and see me are all high-functioning and when I say high-functioning, I know some people don’t like that term, but all I mean by it is we have a bright person who knows how to use strategies like we know how to write a list, you know, don’t see us for CBT and say, have you thought of writing a list?
Because you should get a punch in the face really for that, because that is literally all we’ve thought about for our entire life is writing a list, but we’re too overwhelmed to do it, you know? So people in my clinic, they know what they should do. They’ve read the Internet on procrastination. They’ve bought the supplements, they’ve had the therapy, they’ve tried possibly even the cold water swimming and blah, blah, blah. You know, they’ve tried it all and it doesn’t take away from the fact that yeah, we can use stuff. We can buy the new productivity aid and the new notebook and the new this and the new that. It’s going to work. It’s going to work for a day or a week or two weeks, but then we’ll get overwhelmed and we’re going to stop doing it. That’s ADHD without treatment. The hamster wheel is just too big, of our life.
00:10:48 Dr Katy Munro
Does it impact — with this kind of busyness and overwhelm, does it impact on people’s sleep?
00:10:55 Dr Helen Read
I mean, sleep difficulties are in my view a very core feature of ADHD. I think with ADHD, the problems that we have are threefold really.
#1 we feel a bit crap all the time.
#2. We really find it hard to get things done.
And #3 our sleep architecture is poor and often our actual sleeping habits as well are very poor.
And none of this is intentional. So yeah, all of those things are very much affected. And even if you’re me, who is one of the few people with ADHD who actually sleeps. Before I was on treatment, I used to sleep too much and you know. And I’m only saying this to you, Katy, but I don’t normally say it to colleagues, but actually through medical school, I was famous for sleeping through all of my lectures. That was clearly the fact that I’m here today tells you that I did have to go away and do the work in another way, which I did.
00:11:48 Dr Katy Munro
Yeah.
00:11:49 Dr Helen Read
But it wasn’t intentional. And when I qualified and I was a junior doctor and sort of started rising up the management career and everything, at the point when you’re often in meetings with the chief executive, it was a nightmare because I would literally sit down and doze off.
00:11:50 Dr Katy Munro
Yeah.
00:12:04 Dr Helen Read
Not on purpose. So at that point someone had a little word with me about, you know, would you think of going to the sleep clinic, which is where I went and it’s another fascinating comorbidity of ADHD. I slept there with the electrodes and the next morning they said to me, well, you haven’t got a narcolepsy, here’s the good news. But you have got idiopathic hypersomnia.
00:12:27 Dr Katy Munro
Oh, interesting.
00:12:27 Dr Helen Read
Kind of the silliest diagnosis I would personally say. Apologies to any sleep people that may be listening, but I mean it’s Greek for we don’t know why you fall asleep so much, right?
00:12:35 Dr Katy Munro
We don’t know why you fall asleep a lot.
00:12:38 Dr Helen Read
You know.
00:12:41 Dr Helen Read
But it was a wonderful day of my life because they gave me Modafinil, which while it’s not supposed to have anti-ADHD activity. It certainly is a wakefulness promoter and I find now in my clinic interestingly, there is a certain cohort of people who, like me, tend to drop off who tended to drop off during the day. And often feel sleepy and a bit too tired to get on with their lives. And those people do very well on stimulants underpinned with Modafinil. Yeah, and it’s quite a remarkable combination for those people. So it’s not most people, it’s just some people.
Yeah, I mean that was my story, but even then I wasn’t diagnosed with ADHD. And in fact, it took some years longer for me to work out that, yeah, you know. Of course, you’re on the slope somewhere, but actually, no, you really do have enough problems to get a diagnosis.
00:13:32 Dr Katy Munro
Bring on to diagnosis. Let’s just kind of talk generally about diagnosis because I’ve come across friends and family members who’ve wondered about having ADHD, and they end up often filling in questionnaires and things. Is that the mainstay of diagnosis, there’s no test. It’s a bit like migraine and the fact that, you know, for migraine, we’re all about listening to the history. Tell us your symptoms. When did they start? How did they progress? Did you have a family history? All of that is so important. And the tests are really not so helpful with migraine. Is it the same with ADHD?
00:14:06 Dr Helen Read
Absolutely, and pretty much the same with ADHD. I mean, there is a thing called the QB test. It’s not a brain scan. It’s not a blood test, but it is a sort of test that you can do on a computer which measures your reaction time and things like that. So sometimes children have a QB test. I personally don’t use it as part of my diagnostic thing. But you know it has some validity of course. This can be said for anything with ADHD. If you get the kind of person who is very focused on passing tests or not being diagnosed with anything. Hello, every child and adolescent that ever gets tested for anything. You know, they can try really hard. And of course then they will have that hyperfocus, have that attention and not score, so it can give false negatives.
00:14:52 Dr Katy Munro
OK.
00:14:53 Dr Helen Read
But it’s of some interest if you want to do it and it’s handy for children, especially when the schools haven’t picked up that they’ve got an issue because with children, we really do need a history from another setting and not just what the parents tell us. So sometimes I tell parents to go off and get that for their child if we’re not getting anywhere with the school.
But as a general thing, how we diagnose it. Well, you need three things for a diagnosis of ADHD and let’s be real here. Every diagnosis in the world, I think, and even including gender, everything is on the spectrum, right. And ADHD is no different. It’s on the spectrum. So yes, we have all got a bit of ADHD like those very annoying people like to say. But the thing is, just like depression, you know, just like chronic migraine, just like so many things you need a certain threshold of severity to get the diagnosis. And with ADHD, that threshold is set to include about the top 4% of the population.
00:15:44 Dr Katy Munro
Yeah, ok.
00:15:52 Dr Helen Read
And what we need for that, of course, we need to have the symptoms. I mean that gets you through the door, but it doesn’t get you a diagnosis. So we need symptoms. Second thing we need is a neurodevelopmental pathway. So we need to look at your whole life and we need to see, you may have overcome these symptoms, but you had them in school, there was a problem. You know, in uni there was a problem. In your life, there’s a problem. And we should be able to track this through your life to where you are now and see so that’s our neurodevelopmental history, and even with those two things, it’s not enough. You could have all the symptoms, you could have a barn-door clear neurodevelopmental history. But if you say yeah. But you know what? I’m absolutely fine. There are no issues whatsoever. You still don’t get the diagnosis because the third thing we need is impairment criteria. They have got to be holding you back, causing you problems, making you work harder than other people, making you stay in the office till midnight so you can get a bit of peace and quiet and get things done. You know, somewhere we’ve got to see the strain. And that’s what gets you the diagnosis.
So combine that, which is a lot of information, and when I started my private clinic, this is no lie, my assessments used to take me four hours.
00:17:06 Dr Katy Munro
Wow.
00:17:07 Dr Helen Read
Four hours and everybody was on the floor at the end of that time. Bearing in mind we’ve got a population of people, I mean, pretty much by definition, they’ve come for an ADHD assessment. If they’ve got ADHD, they’re probably not medicated. If they’re not medicated with ADHD, they have approximately two hours in which even in hyperfocus they can actually process what they’re hearing. After that, they’re interested, but their brains are pretty much checking out.
00:17:34 Dr Katy Munro
Yeah.
00:17:35 Dr Helen Read
So it’s actually not possible to do all the things that are required for diagnosis within that two hours. But even if that’s actually a great use of the doctor’s time, which arguably it isn’t, if you’ve got a better way of doing it. So my assessments, they are two hours, but of course within that two hours we not only want to establish the diagnosis, we also want to spend a better amount of time talking about treatment and explaining certain things about ADHD, which we need to know in order to make the treatment work. And we need to do it before your brain goes bust.
So we’re on a stop clock. So what I personally do is yes, there are forms and people have to fill them out. And amazingly, people do fill them out. You know, I rarely have to cancel an appointment because someone hasn’t filled out the form. But I have a long form called the early life form and that is exactly what it sounds like. What about your birth? What about your early life? What about primary school? What about second, blah, blah, blah all the way through. And that’s a brilliant form. And my clients rise to the challenge as I get forms that almost make me cry sometimes because they’re just… the pain and the absolute pain of living a life and working so hard and never getting where you need to get and always feeling so ashamed and so terrible about yourself and people telling you, just the whole thing is just heartbreaking, really.
And so and you know, yeah, people. There’s no question that doing it, having that on a form rather than me face to face talking to them, it doesn’t lose anything. In fact it gains a lot because a) I get beautiful forms that are sometimes extremely long, but always very helpful. And also you know, people find them cathartic sometimes. It’s quite painful, but sometimes people have said, you know what? This is the first time I’ve really, really understood that this actually was there all my life. And I’ve been able to put together the pieces that show me what this has done to me, what it’s cost me.
And it’s going to be very emotional for people, which is another thing which is quite nice to have that before the session because people can get very overwhelmed and very tearful. And of course, you know, that’s not going to help them to process what we need to say and make the most of the session.
00:19:57 Dr Katy Munro
So I’m guessing that they when they’re doing those forms, they can also do a bit and then stop and you know, have a breather and then go back and do the form again and then do it in their own time a bit, but also I would imagine having the chance to kind of reflect on their journey up until they see you is a bit of lightbulb moments of oh, what they’re asking about that. Oh, I remember that. And that definitely happened to me.
00:20:14 Dr Helen Read
Absolutely, totally, totally.
00:20:28 Dr Katy Munro
And the guilt and shame. Do you find it? Because I think again, this is an overlap with migraine. You know, many people who have chronic migraine have a lot of guilt and shame about the burden they are, about why they can’t do the things they want to do. And it’s the same with people with ADHD that are failing to achieve their potential and feeling very guilty about it, or have been discriminated against.
00:20:39 Dr Helen Read
Certainly. Totally.
00:20:39 Dr Katy Munro
And labelled as naughty or, you know, wild or whatever. And sometimes they’re.
00:20:45 Dr Helen Read
Awkward, provocative, passive aggressive.
00:20:47 Dr Katy Munro
Angry.
00:20:50 Dr Helen Read
The whole of shebang, absolutely. This is definitely true, and in fact, you know, I still advise my patients generally or always not ever to declare ADHD on an application form. And I say, you know, you blame me if you want. I’m perfectly happy to step up and say there’s a lot of stigma in society. You know, if you put this down, the chances are people will visualise some hyperactive person smashing the place up and you won’t get the job, you know? And I don’t have anyone like that in my clinic. But that’s what everyone thinks like.
We don’t have a duty to, you know, to discriminate against ourselves. I think society can do that quite effectively anyway. So I tend to say to people, well, tell them once you’ve got the job and you’ve got your feet under the table. They see what a great person you are. Of course there is nobody better than a person with ADHD in the first days, weeks, possibly a month or two of their job because they’re riding high on a wave of dopamine because we get dopamine from starting something new. Plus, they’re so happy because here they are and they’re finally, finally, everything seems to be working well. But of course, if they’re not on treatment, it’s temporary, sadly, because, you know, we’re always got a bigger hamster wheel with ADHD every single day. But on this day, when we’re hyper-focused at work and we’re taking on all the extra jobs and doing long hours and having the time of our lives, we’ve got a much bigger hamster wheel even than that, and it isn’t sustainable for a person to have that big of a hamster wheel and to do it so. And of course the job can only be new and so dopaminergic for a certain amount of time, so we tend to find after a while we’re going to decompensate. We don’t want to, but we are always going to get exhausted, overwhelmed. And then the strategies go. So that’s why we forget to set the alarm clock or, you know, forget the meeting or that e-mail or that report or, you know.
My personal view is it can be quite a strain not to tell the boss why their new idea is crap. Sort of realise that we shouldn’t say that, but it doesn’t go well when you do and it takes dopamine to stop yourself from doing those things or telling stupid jokes, you know, thinking it’s going to lighten the meeting up and these are all not good things to do, but they’re all dopaminergic, we’ll do them.
00:23:06 Dr Katy Munro
Sort of impulsivity, which can be verbal or even physical, I think.
00:23:12 Dr Helen Read
Oh yes, absolutely. Totally. I mean, we have a lot of people that have had a lot of accidents in the clinic, you know, which is physical impulsivity, urge to skateboard off a high thing, you know.
In retrospect, I didn’t do this by the way, I’ve never skateboarded, but I have got people in the clinic that have totally done this, and broken loads of bones in their body. And you know, people that have no sense of danger, like they do, but they just don’t think about it at the time. And the reason they don’t is because their brain is craving that dopamine. So we don’t do that when we get treatment.
00:23:44 Dr Katy Munro
So they don’t see the consequences of their action as well. So they just impulsively do something and then–
00:23:50 Dr Helen Read
They just do it–
00:23:50 Dr Katy Munro
They don’t think, what would happen if…?
00:23:53 Dr Helen Read
Yeah, I mean it’s like you, isn’t it? If you’ve been walking through a desert for three days in the blazing heat and you were practically dead with dehydration and you saw a puddle, you would drink it without thinking, oh my goodness. Is this purified water? Like, am I going to get, you know, your needs for that would supersede everything else? And that’s what it’s like afterwards, you might think, oh, my God, why did I drink that water out of that puddle, how long until I get malaria and diphtheria and all the rest of it. But in that moment, your need would just drive your actions and that’s what it’s like with ADHD. Or, you know, you go out clubbing on a Wednesday night even though you know you should be — again, I don’t think this was me, although I can’t promise that, it may have been me many years ago, but it’s many people in the clinic — you know, we have to start work at eight o’clock. We’ve got a big meeting. Oh, my God, it’s 7am and here I am out clubbing still, you know. What the hell am I doing? And it’s not that we don’t care about losing our jobs. Just in that moment, we haven’t put two and two together.
00:24:50 Dr Katy Munro
Yeah. Now just to briefly touch on the various strategies for medication as well as other things. So what are people in my migraine clinic who are fed up of taking medication, and they’ll sort of come and they’ll say, well, I’ve tried this, tried that, tried the other. Is there anything else I can do to help myself? So we tend to talk to people about the lifestyle changes they can make, maybe some supplements they can take. And then we talk about medication. But from our pre-chat yesterday, I know that you feel that medication kind of underpins all of that, and until you get that medication right, it is quite difficult to make the lifestyle changes.
00:25:28 Dr Helen Read
I mean absolutely, I mean there are three things that help with ADHD, but I do find that the people who come and see me in my clinic, they do know all about the first two things, yeah? Thing one, exercise. Moving your body gives you a bit of dopamine. Anything that gives you dopamine will help your ADHD. So we have a lot of total exercise junkies in the clinic, so people know about that one. And thing two, strategies, then lists, reminders, mum kicking you out of bed. You know, whatever it takes to help you with your things. We tend to be made of strategies if we are functioning, we’ve got so many of them, we don’t even know which is me and which is the strategy because we’ve had it for so long. But nonetheless, neither of those things reduce the size of the hamster wheel, which enable you to cope when the hamster wheel is very big.
And some people get to my clinic, they’re exhausted and overwhelmed. So if there was a little trick that they could do, they would have done it, right. And even if I could tell them an amazing strategy they don’t know, they’re too overwhelmed to do it by definition.
00:26:22 Dr Katy Munro
Yeah.
00:26:29 Dr Helen Read
So in ADHD, the central importance is to reduce the size of the hamster wheel. And the only way we can do that is to give somebody dopamine in the form of medication. And when that happens, everything is so much easier. Yeah. Now we can remember to set the alarm, now we can go to the gym on the way to work, if that’s what we want to do, we can remember to buy bananas and put them in our bags so we don’t binge out on the coffee trolley. You know, these little things that we know, but we just will not ever be able to do. We can remember to write up our notes after seeing the patient instead of leaving them all till the end of the day when we’ve forgotten which patient was which, you know.
So do you see what I mean? It’s not about not knowing things. And the same with eating. I mean, we haven’t come yet, have we, to the significant overlap of ADHD and migraine. But I think you know, one of the things about it and we do often see that ADHD medication really helps with migraines and I think in the future I think you might have said that you’ve noticed that as well in your clinic.
00:27:30 Dr Katy Munro
Yeah, yeah, yeah, I think we’ll talk a bit about the overlap because both of these are genetic conditions with environmental impact as well affecting the way you behave and what you do. Both of them are stigmatised hugely. Both of them are pretty common. I mean, migraine, one in seven people have migraine and I suppose–
00:27:50 Dr Helen Read
ADHD as well, we’re one in twenty if you’re taking the 4% definition, probably more like one in ten of kids.
00:27:56 Dr Katy Munro
Yeah. And they both present at any age. So we see anybody. My youngest patient was three, was having recurrent migraine attacks. And right, you know, until the seventies, not usually into the eighties and nineties but they are lifelong conditions that people have to manage. And some of the strategies that we talk about for managing migraine are about regularising their lifestyle choices and their diet.
00:28:38 Dr Helen Read
Totally.
00:28:38 Dr Katy Munro
And one of the worst things you can do with if you’re somebody with migraines to skip meals. And of course with ADHD, that disorganisation, that slightly chaotic world, will make migraine and migraine tendency turn into migraines.
00:28:38 Dr Helen Read
Definitely, and the need to hold on to hyperfocus you know, because you can’t rely on it, you get it. And I mean time after time people say, I can’t stop to eat. I can’t even stop to go to the toilet because I’m so worried that if I leave it for one second, it will never come back and I’ll never get that thing done, and so of course, with medication, we know that we can show up every day now and do it. We’re not limited to that. And it’s then much easier to remember those things.
And yeah, eating, I mean, migraine is one thing, but also a lot of our patients especially our hypermobile patients have very chronic gastro issues, IBS-type things, constipation, and those things can improve a lot on ADHD medication as well. I think there is something about actually calming down a troubled tract as well, but also certainly eating regularly, remembering that anytime I eat potatoes, you know I end up on the toilet for the next three hours. It’s easy to forget that kind of thing if you’re totally overwhelmed and busy, and the same with migraine, I mean, people call it, well, allostatic response of the brain, don’t they, whereby it’s the brain basically telling you right now, you have to stop, otherwise something bad is going to happen.
00:29:54 Dr Katy Munro
Yes. I do sense that feeling of sensory overload with people with migraine, you know, people with migraine are often saying to us, oh, I’m very sensitive to medications or I’m very sensitive to the light or I’m sensitive to sound or I’m sensitive, you know, I can’t possibly skip a meal because otherwise I’m into a migraine attack. And I get that feeling with people who’ve got ADHD as well. It’s that highly sensitive. Your brain is sensitive to things, isn’t it?
00:30:21 Dr Helen Read
Very sensitive. Yeah. I mean, half of our clinic population with ADHD will be that kind of highly sensitive profile. And of course that very much affects how we start medication. And I think it’s a big part of the reason why a lot of people don’t have a good time with ADHD medication because as they’re half of our clinic population, if they take the whole tablet of anything.
00:30:42 Dr Katy Munro
Yeah.
00:30:43 Dr Helen Read
They’re going to get side effects and of course there is this thing I mentioned yesterday which feels a bit heretical to say, but is undoubtedly true, and I certainly tell everyone in my clinic this, we have a lot of physical anxiety. We know what that feels like. If we’re a highly sensitive person, we’ll get that when we have a coffee or maybe even a tea, and it’s going to stop us sleeping and we’re going to be palpitating and sweating.
Sadly, those physical symptoms of anxiety are identical to the first half of the side effects leaflet. So you combine that with a person who is very anxious about taking meds, which interestingly all of our patients are as well.
00:31:16 Dr Katy Munro
Yeah.
00:31:18 Dr Helen Read
And you’ve got someone who says, oh, you know, I’ve taken the whole tablet, I’m feeling a little bit jittery. Well, not surprising because it’s probably a bit like having several cups of coffee. I’m reading the side effect leaflet, I’m super panicky now, and as I read on I see heart attacks and death and now I’m having a full on panic attack, you know, and none of that is necessary if that person understands that they are sensitive to medication. It’s not really a concept in mainstream medicine yet, but it really does need to be, doesn’t it? Because there are so many people that have this problem and I do send my patients a list of the physical symptoms. I do actually tell them what I’ve just said to you and it helps them a lot to kind of start the meds at their own pace.
00:32:02 Dr Katy Munro
So many people with migraine have a really bad anxiety as well because partly they are anxious about having another migraine attack and the impact that that’s going to give them on their work or social engagements or their family commitments and then so anxiety is nine times more common in the patients we see with migraine. And I just recognised also the real importance of other people around them understanding their condition, because if people understand what migraine is, which is why we’re constantly banging on trying to educate every aspect of society about migraine and I’m guessing that again is the same way with ADHD.
00:32:46 Dr Helen Read
There is some research actually, which very sadly shows that ADHD families are way more likely to take rather punitive views about ADHD than non-ADHD families. So quite a lot of people that we see and I think we can explain that because obviously it’s a genetic thing. It runs in the family. You know, I personally am of the view that if we have ADHD, then all of our biological relatives will be touched one way or the other. Doesn’t mean they can all get a diagnosis.
But I think it’s about being a slightly different kind of human in a way rather than actually having something wrong with you, and if you are this kind of human, you’re going to function more in an ADHD way than a non-ADHD way. So I think because up until recently it hasn’t really been possible for people like you or me to think, oh, maybe my problems could be ADHD because it just isn’t known about. Then all we can do is punitively drive ourself forward with discipline and shame and habits, and da, da, da. And of course, we’re going to want to impose those on our children because, for us they might be exhausting, but they’re the only thing that helps us to function. And so it’s very important. And anyone that’s had children will know that, seeing your children having exactly the same thoughts that you do, really makes you want to reach out and crush them a little bit because not in a bad way, but in a way, you really can’t do this because it’s going to cost you.
00:34:11 Dr Katy Munro
Because you know what impact it’s had on your life?
00:34:12 Dr Helen Read
If you know what it’s done. How hard the fight has been, yeah.
00:34:15 Dr Katy Munro
You mentioned that people have strategies and sometimes they don’t realise and I’m aware recently that there’s a bit of a gender bias as well. So a lot of women don’t seem to be diagnosed with ADHD until later in life. And sometimes I think that’s the influence of hormonal changes in the run up to the perimenopause and the menopause with the oestrogen is such an important thing and we see that in the perimenopause with migraine attacks either starting or worsening and that. So women are also, I think, quite good at putting in those strategies and having to keep it all together because they’re often so multitasking. What is it, you think, about women that has historically made it so difficult for them to get a diagnosis?
00:35:10 Dr Helen Read
Well, I do think that certainly every neurodivergent diagnosis has been written for, you know, little white boys basically. So the further you are from being a little white boy, the less the criteria might apply to you, so women are often — not always, but often — more predominantly inattentive. And so in the classroom, they’ll be the ones that are staring at the teacher, probably completely zoned out, probably thinking about something else and not hearing a word anyone says.
But the teacher won’t know that because if they’re clever, they can work out what to do, and they can pass. And I think that women tend to, as you say, well — and all of this is a generalisation of course, it’s not all women, it’s not all men, we do know this — but you know, women will have more social pressure to behave and be seen to be normal, whereas boys get away with a bit more weirdness and a bit more bouncing around. That behaviour that somehow fits into the male trope of what we’re meant to be like.
00:36:15 Dr Katy Munro
Yeah, yeah.
00:36:21 Dr Helen Read
And you know you can see on romcoms, don’t you, that the charmingly, actually very annoying kind of romantic hero is bouncing around and not paying attention and being super impulsive and rude and whatnot. But that’s charming. And it’s OK because it’s a man. If it was a woman, it wouldn’t be so charming and they wouldn’t be the hero.
But yes, I mean I think that applies to life, doesn’t it? And of course, women do have this choice, which is very mandated by society of marrying, staying at home and having children. And while that doesn’t lessen ADHD, it lessens the visibility of it. You know, one thing you can do about ADHD is make your life smaller. If you don’t get medication. And I’m not saying it’s actually a smaller life, but I’m saying that people can’t see what you’re doing because you’re inside the house.
00:36:55 Dr Katy Munro
Yeah.
00:37:07 Dr Helen Read
And you can sort of pass on a lot of the things, being ditzy, you know, being a bit cluttery, being a bit kind of disorganised, these are kind of female-associated virtues, aren’t they, as it were so.
00:37:21 Dr Katy Munro
If you then are going through that perimenopausal change and you add in not only that you have ADHD, but you also may have migraine aggravated by fluctuations in oestrogen and add in a bit of sleep disturbance because we know that hot flushes disturb sleep, ADHD disturbs sleep, migraine disturbs sleep and then you add in a bit of brain fog. I mean it’s a lot.
00:37:45 Dr Helen Read
Yeah, it totally does. Exactly. The biggest, probably the single biggest group in my clinic is menopausal women, either peri or post or whatever. But there is this, you know, we cope, we cope with our strategies, we cope with working hard and we cope with looking after everyone, we cope by camouflage, finding environments where we don’t show up too much.
But then it’s like the Titanic and the iceberg. You know, the level sinks and suddenly this massive thing is there, like it’s always been there, but it was submerged before and now it’s there visible for all to see. And ADHD is a very emotional disorder. So even more than a non-ADHD brain, we get dopamine from feeling successful, good, you know, valued, appreciated, validated, good at our job, blah blah blah, et cetera. We get the opposite, shame, rejection sensitive dysphoria, all kinds of emotional dysregulation are massive in ADHD. And of course, that’s another thing. Women are kind of expected to be a bit mental and a bit neurotic and a bit emotional. And so it’s going to be easily written off, as you know, it’s depression or it’s anxiety or it’s going to have a lot of therapy.
And speaking of therapy, I think as a therapist myself by the way, I think inadvertently, the therapy kind of explanation of everything which is in society. If anything bad has ever happened to you in your childhood, that is the total explanation for why you’re not functioning. That doesn’t help somebody with ADHD because, yes, we can have a bad childhood. I personally had a terrible childhood, and for years that was my explanation for why I was having trouble and I had years of therapy. But I was still having trouble, you know. Because of course, therapy is great for what it is, but it’s certainly not a treatment for ADHD. So I think for women because of the way our ADHD presents and what society expects of us, and the kind of roles that women have and maybe even the way that it’s kind of OK for women to be not that successful because actually we’ve still got a bit of patriarchy there. And in fact, it’s not a bad thing, is it, if we take ourselves out of the running, I don’t think anyone’s going to complain too much about that.
So it’s only really when we start to be very troublesome at menopause, when we can’t hold it in and be the hostess with the most-ess and start to get a bit kind of messy and a bit awkward that people think it’s a problem.
00:40:17 Dr Katy Munro
Can I just talk a bit about what we think is going on in the brain? I don’t really completely have the understanding of this yet, but I’ve read something about in prenatal issues affecting the brain. So if their mother is very stressed and their high levels of cortisol and things like that, then that can have an effect on the developing brain of the foetus. And then you mentioned adverse childhood events and that’s certainly something that I know a lot of people are looking at at the moment as to how that affects the developing brain. So is there a sort of overview of what is happening in the brain, is it all to do with dopamine? Is it something that is just a genetic predisposition that life activates, or what do you think?
00:41:07 Dr Helen Read
That is a very interesting question, and I suspect this reveals another parallel with migraine, right. Not a migraine neurology expert, so do slap me down if I get this wrong. But I do believe that we don’t totally understand why migraine happens. We kind of know that the meninges are probably set off and we know there’s something going on with the trigeminal nucleus. But the why and how and whatever. And I think ADHD is the same. There are many theories around general headings of mothers doing something terrible, or some sort of aspect of poverty, with lead and things of that kind. Or let’s look at five ADHD brains and decide that the prefrontal cortex is a bit smaller but none of these things have reached any level of statistical significance. And I personally think that the evidence really points to it being genetic.
00:42:02 Dr Katy Munro
Mm-hmm. Yeah.
00:42:02 Dr Helen Read
As you know, it runs in families. There’s no question it runs in families, I have whole families. My whole family has ADHD, and many whole families come in one after the other, and they all have ADHD. And yet they were born in different wombs. But of course, you know. This is where these things are subject to our own cognitive kind of either need to explain everything if we’re doctors or need to understand everything because it feels good to understand everything. It feels difficult to say actually maybe we don’t understand everything, but I think you can say, well, clearly if ADHD runs in the family. My dear mother has now passed on. But I’ll tell you, she was one of the most neurotic people you could ever meet. Like there’s literally no question that, it has to be that when I was in the womb, if she was as mental as she was the rest of her life, then she was very mental indeed. But on the other hand she clearly had ADHD coming out of the gills, you know, which was never diagnosed, so I would personally say to me it seems way more credible. And I was not that neurotic when I was pregnant with my children. And one of my children was actually born by double donor IVF. Still had ADHD which, you know, that one is just weird, but.
00:43:18 Dr Katy Munro
Yeah.
00:43:19 Dr Helen Read
It may be something to do with people with ADHD being slightly more altruistic and wanting to kind of do things for other people and maybe the kind of person who becomes a gamete donor is somebody who’s more like, I don’t know, that’s purely in the realms of hypothetical hypothesis, but he fits in beautifully into our little ADHD family anyway, so it was, all for the best.
00:43:39 Dr Katy Munro
Yeah.
00:43:44 Dr Helen Read
And undoubtedly I mean a very interesting thing around language processing because one thing I see in my clinic is that almost everybody has quite significant issues with their language processing. Now, I don’t particularly and I don’t really know, because I’ve been on meds for so long, I don’t know whether perhaps it was worse before. And it’s better now.
00:44:04 Dr Katy Munro
When you say language processing. What particular aspect of language processing?
00:44:08 Dr Helen Read
Well, your auditory processing is often affected. They have a little screener for people. And of course, with the two-setting ADHD brain, what we get is, fortunately for my assessments is that if you’re interested and you’re in a quiet place and you’re by yourself and you want to be there, that’s when somebody can process very nicely, but after two hours an untreated ADHD brain will be quite tired, whereas when I take my stimulants I can go on all day. So we’re both hyper-focusing but my brain is a lot less tired.
I mean most of our brains are not in hyperfocus a lot of the time. So if it’s a group like a classroom for example. If it’s a bit noisy, if there’s chit-chit-chitting going on all around, then in any of those situations, but additionally with ADHD, if I’m a bit intimidated by you or if I think you’re going to tell me off, or if you’re my boss and you’re going to give me a hard time, or if you’re my partner and you’re going to tell me that I forgot empty the bins again. You know, any of those or if I just don’t think you’re a nice person or I don’t like your politics or, you know, so many things. But if we feel a bit emotional, a bit criticised, a bit got at or whatever, then also we’re actually not really going to process what people are saying, which is quite significant when you’re thinking about feedback and stuff like that.
00:45:24 Dr Katy Munro
That has implications for memory as well, I’m guessing.
00:45:26 Dr Helen Read
Yeah, if you don’t process it, you can’t remember it because you haven’t heard it in the first place.
00:45:30 Dr Katy Munro
So you’re zoned out and maybe you’re sort of hyper-alert in case somebody’s going to be critical of you or that’s taking up your brain energy rather than what they’re actually saying.
00:45:40 Dr Helen Read
Yeah, well, you are. So this is the second time when people weep in my assessments when we talk about this because of course if you don’t really hear what people are saying a lot of the time and my patients are very good at the listening face and the nodding and the smiling and cleverly working out what people probably did say, but they know they’re missing a lot and in a world of language, this adds up to, well, I must be secretly stupid and let me just kind of really make sure that nobody ever finds that out. So people know this, but they’ll never tell you. And it’s a really big sign. It also means, though, that nearly 10% of our kids can’t actually take in what’s going on in the classroom.
00:46:19 Dr Katy Munro
Yeah.
00:46:20 Dr Helen Read
Which is quite significant for the education system, isn’t it?
00:46:22 Dr Katy Munro
It can easily get them labelled, can’t it, easily get them labelled either as disruptive or–?
00:46:25 Dr Helen Read
If you’re hyperactive, rushing around and start moving around. If you’re inattentive, you just zone out, but you don’t know what the lesson was. There’s possibly quite a familiar debate between parents and school. He wasn’t told what the homework was. Yes, he was. But he doesn’t know. Well. Yeah, he doesn’t know because he totally zoned out and a lot of this was unmasked in the pandemic, by the way, with online schooling, because people are clever at copying their classmates’ work or whatever. Suddenly there are no classmates. Suddenly parents can see that their child is not taking in a frigging word of what’s going on. And so we’ve got a lot of referrals and new referrals in lockdown partly for that reason.
00:47:04 Dr Katy Munro
Can I ask you about diet? Because I read somewhere that you know, if you have ADHD and you’re concentrating on a task, you need to keep fuelling yourself with sort of carbohydrates. And I know certainly I know a couple of people who tell me that really they have to have chocolate or they have to have quite sugary foods or something like that.
00:47:28 Dr Helen Read
It’s more sugars and fats, I would say, yeah, it’s more sugars and fats. It’s this huge ADHD-binge eating connection because if you understand that your brain can only really process language when you’re hyper-focused, but you can never be hyper-focused on things that you have to do, then a lot of the time you’re going to be under a lot of pressure. And if it’s a written task, especially, that really is difficult. So students have a lot of trouble with this, trying to write their essays and things.
And there’s only really two things you can do with an ADHD brain if you don’t know you have ADHD and if you don’t have treatment, they’re both super bad for you but you’ve got no choice. So #1 is this very negative inner voice that we all have. You know, you’re rubbish. You’re pathetic. You should be ashamed. You’re letting yourself down. I think that gives us a little bit of dopamine. I think that’s why we all do it so much, doesn’t give us hyperfocus, but it gives us the ability to grind out some sort of productivity, which is really all we can do before the last minute when that hyperfocus comes along. So that’s a big thing. And the second big thing is that we can eat unhealthy food stuffs and salad is not going to do it, but biscuits, you know fatty foods, whatever it might be, it has to be that. And so often people can be quite significantly overweight because of that, and because of associated emotional eating and inattentive eating, and again going on treatment really helps with that because you don’t have to stuff down the biscuits to get the work done, but without treatment it’s biscuits or work.
00:48:55 Dr Katy Munro
Yes, yeah, yeah.
00:48:56 Dr Helen Read
You know, and that’s not a good choice, is it really?
00:48:59 Dr Katy Munro
Let’s talk a bit about the link condition. So we know that migraine is a link condition and we see a lot of it, but also in our migraine clinics, we see a lot of people with hypermobility, with histamine issues, with MAST activation syndrome, postural orthostatic–
00:49:13 Dr Helen Read
Snap. Yay.
00:49:17 Dr Katy Munro
We tick all the same boxes, don’t we. And I mean, I see a lot of patients who have either have or have a family history of celiac disease, gut disorders you mentioned, while malabsorption yesterday was a new one. I hadn’t come across that one from an ADHD point of view, I’m not sure that we see that in migraine, but there’s such an overlap, and I think the trouble is with the way that we deal with people these days in the health services is we put them in one box.
00:49:49 Dr Helen Read
We’re so siloed, aren’t we? Yeah, we are.
00:49:52 Dr Katy Munro
And actually, there’s a huge overlap between many of these different conditions–
00:49:57 Dr Helen Read
Absolutely, absolutely.
00:49:57 Dr Katy Munro
That might be put in, you know. Cardiovascular symptoms, fainting. MAST cells, maybe getting rashes or food intolerance.
00:50:05 Dr Helen Read
Yeah, exactly. And medicine sensitivity and constipation, and if you’re a woman, of course you’re going to come across as a bit emotional. And that’s not, you know, that makes you mental. So you’re going to be discounted. There’s a huge population of women that are just written off as mad and can’t go to their GPs even though they’re suffering a lot. Because there is no box for them.
I think that’s what’s really — that is why I said to you earlier that I’ve really come to think that with ADHD, we’re just a slightly different kind of human. Not like the Neanderthals, but in the same way that we still have Neanderthal DNA in our genome. You know, even though actual Neanderthals are dead, they live on in a in a very tiny percentage of our genome. And some of our genes. And I think with ADHD, there’s a very interesting hypothesis called the hunter-gatherer hypothesis, which is basically saying that in the past we had hunter-gatherers and they did hunting and gathering. And we had farmers who took a more patient, crop-based approach to the lands and the farmers will win over time in a war because you get more food out of the land if you use it for crops than if you do for hunting and gathering. So now we have a farmers’ world where we very much prize kind of doing the same thing every day, and group dynamics and all these kinds of patience and attention to detail. But of course the hunter-gatherer DNA, which this bit is true, is definitely still there in our genome. Then so could it be that those of us in the top percentage of these traits are the people with the most hunter-gatherer DNA?
And if you know, I think there’s — obviously one can never know about something that happened a very long time ago, but there certainly is some evidence for it. So it depends what you want to do with that evidence, but it makes sense on an intuitive level if you imagine someone who is a hunter-gatherer. Yeah, they’re going to have trouble sitting still in the classroom and listening, but they may not be the kind of person who wants to do large group chittering kind of social small talk, you know, which again, a lot of our people find difficult and they don’t see the point of it really.
But there is a point. The point is social grooming, isn’t it? But I don’t think that’s something that neurodivergent people do. I think it’s a slightly different trait. And so, you know, if that were to be the case, why wouldn’t it be the case that these people who are slightly different have a slightly different set of bodily conditions and there’s a slightly different medicine is required and their immune system is, so, you know.
So that makes sense to me. I’m not hypermobile having said that and I don’t have all the orthostatic intolerance, but I am the one of the only people in my clinic who doesn’t. I spend significant time every day telling people to drink water and salt and explaining about bendy blood vessels and flight socks and things like that, you know?
00:52:46 Dr Katy Munro
Yes, right. Yes. Yeah.
00:52:49 Dr Helen Read
So much of it. I saw diet, right? You know, our lot need a high-salt diet.
00:52:54 Dr Katy Munro
Yeah. Yeah. But I guess also we’re going back to what we were saying about genetics and it’s the same with migraine. You know, you’ll get one person in a family who has a real impact from migraine and, you know, it’s really dominating their whole life. And they say, oh, yes, my sister also gets occasional migraine, but nothing like me. And I suppose in the same way, from the genetic background with ADHD, you’ll get some people in a family who clearly have a high impact from it and other people who have some traits but we haven’t really got enough to add together to put them into that dynamic.
00:53:27 Dr Helen Read
Totally, yeah. Yeah, and we totally shouldn’t — of course, we don’t know what would happen if we put that other person on medication with their life, you know, where is actually the threshold where stimulants will improve function or not, because I think it’s probably quite a lot more than the top 5% of people, but that’s another discussion. Yeah. I mean, absolutely. And I think with all of these things, you know, my father was one of the people who worked on the Human Genome Project back in the day. And there was so much excitement about that, wasn’t there? We’re going to finally understand why all these things were. And of course, it’s been a massive plopping disappointment, hasn’t it really? Because we find that everything has these mildly associated genes that, you know have some small association, and there are an awful lot of them, and we can’t really say anything. ADHD is the same. You know, there are. I’m interested in this area myself. But you know you can’t see ADHD in someone’s genetic screen.
00:54:19 Dr Katy Munro
No, no.
00:54:19 Dr Helen Read
Although interestingly, the service I use has, like it does with migraines, there’s a group of genetic things that it points out, which are sometimes positive, but obviously one doesn’t test the general population. I don’t think that’s really got predicted value. It’s interesting for me if one of my clinic patients sends me their raw genetic data and I put it through my thing and I think, ooh well, you’ve got some ADHD genes. But you know it’s not really telling us anything. We already know they’ve got ADHD. The same with migraine, right.
00:54:45 Dr Katy Munro
Yeah. The same with migraine. And our mantra is more research is needed. You know, I think we still need to find out so much more about all these kind of conditions as to why, we certainly have patients who respond like super-responders to some of the newer medications which are blocking CGRP neuropeptides and other people who say, well, it didn’t do anything for me. And I’m guessing that’s the same with the ADHD medications that you’ll find that some people respond very well to one, and you have to find ways of working out which particular medication will do for the right person.
00:55:27 Dr Helen Read
You do, you do. You do have to do that. I mean, it’s not too hard with ADHD because there are only two kinds of stimulants. So it’s more art than science to really I think at this point to sort of work out which one you’re going to try first. But ultimately they can’t try both, right. So you know, that’s not too hard.
But one thing that’s very big in the clinic, and I’m guessing it might be big in your clinic as well, we have a lot of people that put way too much pressure on themselves and part of it is saying, look, if you’re going into this with a great big list of jobs that you think you’re going to be able to do, that is actually going to make treatment fail. But paradoxically, you have got to relax when you start treatment, you’ve got to separate any idea of “when my treatment works I’m going to do this” because it I think sets up a failure mechanism whereby part of the brain I think doesn’t see this as good news because it’s very hard work the life that we’ve had so far so part of what I do is kind of educating people that when we have our treatment and when our hamster wheel is smaller, we’re going to have to stop with the old picky parent and the old pressure and the old shame.
And it’s going to be more about, we don’t have to get dopamine that way. We can now relax a little bit and we can understand that none of this is to make anybody into a robot clone. And there’s also a big issue, again, with co-dependency and looking after people and doing too much and having no boundaries. You know, that’s another thing we talk a lot about in the clinic.
00:57:00 Dr Katy Munro
Yeah.
00:57:01 Dr Helen Read
Because if you’re trying to get better so that you can do something which is really bad for you, interestingly enough, treatment generally won’t work.
00:57:09 Dr Katy Munro
Yes, yes, yes.
00:57:10 Dr Helen Read
You know, and so that I find that to be a bigger factor than which type of medication it is personally because if you’ve got that person who’s got those kinds of very unrealistic ideas, well, sometimes you get somebody like a young autistic man who’s, you know, left school and very miserable and sat in their bedroom for eight years, but wants to become a published author. But that is too big of a goal, like we can’t expect that from a tablet.
00:57:30 Dr Katy Munro
Mm hmm.
00:57:36 Dr Helen Read
And there’s a bit of the old, OK, let’s break our goals down a bit. How about we try going out of the house, before we think about being a published author. So there’s stuff like that which I think is very much part of where the treatment works or not. Do you find that in your clinic though?
00:57:52 Dr Katy Munro
I think people are migraine warriors. I mean, we call them migraine warriors because although there’s a misperception that people with migraine are actually just making a big fuss and they’re swinging the lead, actually, the vast majority of people that we see are often pushing through and doing things they shouldn’t be doing because they don’t want to let people down and they don’t want to fail or they simply have to because they have to keep their job or they have to look after either their children or their elderly parents or whatever. So yeah, I think very much so. They tend to be people who are trying really hard to keep going.
00:58:30 Dr Helen Read
Yeah.
00:58:30 Dr Katy Munro
And it’s about sort of giving them permission to say, right, let’s just take a step back and look at an overview of what you’re doing and make some space in your life so you can actually eat properly or do some stress management things you know. I mean, it’s very hard for some people.
00:58:49 Dr Helen Read
It’s a prerequisite I guess for treatment working, isn’t it, because the brain is telling you I’ve had too much?
00:58:55 Dr Katy Munro
I mean, it’s all those contributory factors. I think that we know at the National Migraine Centre. And talking about getting into the system for help. I mean, when we see patients, they’ve referred themselves. So they can just fill out an online booking form and refer themselves to us and we will do a full assessment. We have a bit of a waiting list at the moment because like you, there’s so many people who want help with this. But I’m aware that if you go to your GP and you say, I think I might have ADHD, then it’s a huge mountain to climb to then get to the next step, which is, you know, private clinics.
00:59:35 Dr Helen Read
I don’t even believe in private healthcare, but you know it’s difficult to be ADHD-aware and function in the NHS at the moment which is a little unfortunate. But yes, it is very hard.
00:59:49 Dr Katy Munro
Two things about that. First of all, I have heard in the news, and I’m sure you’ve come across this, that there’s a huge global shortage of ADHD medication. So they kind of think, well, even if I get diagnosed, I’m not going to be able to get any treatment. But you said to me yesterday that that’s resolving.
01:00:06 Dr Helen Read
That is largely resolving. I mean, obviously there are a lot of different medications. So at the moment I’m aware of problems with certain doses of methylphenidate. But we generally can get what we need to get, but last year we had a big problem with lisdexamfetamine, which is one of our most effective ADHD medications and it just was not available at any strengths for a while. So that was causing huge consternation, not least because I mean although short-acting dexamfetamine was available, these are controlled drugs. So if you are out there and you’ve been getting that treatment from your GP, your GP’s not really allowed to give you dexamfetamine even if that’s the only thing that’s available.
And the wonderful — you know, I mean, it was a terrible time, but one of the really great things about it which I would never have believed possible is that we were emailing our GPs that work with our patients and saying look, could you give this person dexamfetamine? They’re not really supposed to. So many of them did. They stepped up because they realised how important it was because they could see the difference, not all of them did, a few of them are in the naughty corner. But they were only following the rules so it’s not really the naughty corner, but it caused immense suffering for the patients because not all of them can afford to come back for a consultation, and even if they can, these medications are quite expensive and I might be able to give you a free consultation here and there, but I won’t be able to do anything about the fact that the meds are expensive. So yes, it was more about the fact that these medications are controlled, I think, and therefore it wasn’t easy for people to access alternatives. There’s still a huge issue in America, by the way, in the US with these things, I believe. But in the UK, we’re fine now, factories are opened and it’s all right.
01:01:50 Dr Katy Munro
The other thing is, of course, we hear about this all the time about NHS waiting lists and you know if you get referred to a specialist in ADHD in the NHS system then you can be waiting a couple of years.
01:02:04 Dr Helen Read
Couple of years? Four years, seven years. Close the waiting list because we can’t take any more. People haven’t got a service, you know? I’m actually a co-author on — UKAAN is the United Kingdom and ADHD Network, which is a group of clinicians who are looking at doing research. And they did a paper, this was in 2021 and it hasn’t got better since then about the absolute impossibility of getting any sort of timely access to NHS.
And I think the other thing people don’t talk about, loving the NHS as we do, when I left my NHS job in 2020, I was running the Three Borough ADHD service and I was doing it on half a day a week, by the way. But when I left none of the consultants had ADHD. You know, it’s not something we learn about in medical school. It’s not something a lot of doctors have a lot of information about generally, unless they have it themselves or have a family member with it, they’re going to know no more than the general population does.
01:03:04 Dr Katy Munro
Mm-hmm.
01:03:04 Dr Helen Read
Which is a bit, you know, it’s a real gap. So yeah, they had to basically draw straws to run the service. And the one who got the short-straw couldn’t even see a patient at all until she had waited three months to go on a -two-day introduction to ADHD course. And this is the person that’s running a Three Borough — so bless their hearts and they do their best, but they’re not often specialists. And if you are a specialist the knowledge that you have about ADHD can actually make it quite difficult for you to function within the NHS climate because of the general lack of understanding about what’s needed.
01:03:41 Dr Katy Munro
Like with migraine, I think that there’s very little thinking about migraine and very many clinicians in hospital, you know, neurologists aren’t specialists in migraine but they may be fantastic at Parkinsons.
01:03:43 Dr Helen Read
Yeah.
01:03:53 Dr Katy Munro
And they might have a little bit of knowledge. You know, the basic knowledge of migraine, but the incidence of this condition, the impact it has on lives.
01:04:05 Dr Helen Read
Well, absolutely. And my neurologist friend was saying was saying exactly that to me actually. But she was also saying that by the time people get to her clinic they’ve got chronic migraine and by the time they’ve got chronic migraine, everything has gone wrong for years and years. So it’s become quite a complex thing in fact. You know, it’s not just, oh well, you know. At least with ADHD you can give somebody a pill, as long as you’ve chosen it right and talk to them right, you can make a very significant improvement, including in migraine, for a lot of people as well. But it’s not that easy coming from the other end, is it, from the migraine end? It’s not. Yeah, probably it’s going to take a bit of work.
01:04:41 Dr Katy Munro
Well, once it’s developed from episodic to chronic migraine and the thresholds are having attacks is so low that everything just triggers an attack. So it’s a bit different in that way I think, but let’s talk about what sort of resources are available to help people with ADHD to get through the system. So I know there’s a thing called Right to Choose, isn’t there?
01:05:12 Dr Helen Read
There is Right to Choose, it’s a marvellous thing. So Right to Choose is the general NHS policy that kind of says that you have got the right to choose which hospital, which place you’re going to be referred to. It doesn’t mean you can choose to go anywhere. I mean, you can’t choose to come to my clinic for example, because you can only choose to come to a clinic that has more than one NHS contract. So you know, but there are some providers that do it. I mean, the main one is Psychiatry UK, which isn’t, you know, people criticise Psychiatry UK and they say it’s all very basic and everything. I think they are brilliant. They do a one-hour assessment so it’s no-frills but if you’re talking about the size of the population that needs this, let’s have a one-hour assessment rather than no assessment, right? Let’s not criticise the one-hour assessment because that’s pretty good, because it’s private as well, it’s certainly not part of the NHS, but they do have contracts, so therefore they come within the Right to Choose. You’re likely to get a proper diagnosis if you go there, whereas unfortunately if you go to the NHS it’s a real lottery and unless you are a madly hyperactive person covered in tattoos and doing everything it says in the book, you could still meet someone who tells you, well no, sorry, you haven’t got ADHD, which you know. And after four years’ wait, that is a little sad, right? So it’s devastating for people because there’s nothing else they can do. Like, if it’s not ADHD, you’re doomed because you’ve tried everything else and there is nothing.
So if you go to Psychiatry UK, you are much more likely to get an accurate diagnosis. And there is a treatment stream and your GP should accept it. I’ve certainly heard of GPs who refuse to make referrals to Psychiatry UK. And of course, that’s the first step to getting Right to Choose, so. Sometimes it’s easy, other times it isn’t. They still have a waiting list. Last time I checked, it was nine months, and then of course after that you’d get your diagnosis, but then you have to wait again to see the nurse practitioners to give you the treatment. But it’s a hell of a lot better than nothing, and it’s massively better than the NHS, so absolutely all power to them, right? So Right to Choose is a marvellous thing and there’s a couple of other providers now that also offer Right to Choose which you know you can look up if you Google “Right to Choose ADHD”, you’ll see the people that do it and you can look yourself at the reviews and work out which one is the best and then you take a letter to your GP. And I know Psychiatry UK has a letter on their website that you can print out and take it to your doctor, asking your doctor to refer you to Psychiatry UK. So that is a jolly good thing to do for anybody who doesn’t have the money to go private.
But you know, it is much, much better and at least OK, you may be waiting for nine months, however long it may be, but you will know how long you’re waiting and you can phone up and say, well, I’m on the waiting list. Very often with the NHS it’s going into a void. And I mean, I think I’m still on my local NHS waiting list as a matter of fact, you know, six years later, I’ve just left myself there just to see if anything happens and so far it’s not happened, but also will it ever happen? I have no idea. If I were genuinely waiting for a diagnosis, that would be six years of my life gone that I won’t get back. So yeah.
01:08:17 Dr Katy Munro
The other thing was, I’m aware of it, which I think many people don’t necessarily know about is the Access to Work support. So this is on the Gov.UK website. If you type in “access to work”, you can see all the details. And it’s not just for people with ADHD, is it? It’s for people with any physical or mental condition that might impair their access to work. They have to be in a job, as I understand it. And then you can apply, filling out a fairly straightforward form about what kind of support they need.
01:08:47 Dr Helen Read
Yeah. I mean, I get Access to Work is a very good thing. And yes, it does give you a package of things. Personally I would say to my patients, it’s definitely available for ADHD, but the process of application is bureaucratic and it involves delays and waits and emails and times and appointments. And, you know, all sorts of things. It’s not very ADHD-friendly, but there are services that help you to apply. And I’ve always recommend that my patients use one of them, not because I’m being paid by the service, but because it’s a genuinely good thing. I don’t accept payment from anybody to recommend anything, because I think it’s a bit suspect and fortunately I don’t have to, so that’s good. So yes, there’s an organisation called Headstuff ADHD Therapy that have an Access to Work application arm and they also know what you can get because yes, it’s easy. But actually how do you know what could be available to you? And there’s a range of things available from things to assist with reading and writing, that software support. ADHD people on the whole have a lot of trouble putting written documents together so you can get visually-based programmes that assist with that going from idea to actual presentation which is fantastic for people. But you can also get it if you’re self-employed or have your own business as well. I think there’s some kind of earnings threshold, not sure of the details, but it’s all on the page as you say, and some people can get PA support, which is obviously very helpful. I’ve heard a whisper that that’s becoming a bit less available, but you know, it’s always worth trying, isn’t it, to get it because that can make the difference between succeeding or failing.
And it really is, you know, we can criticise the government, but actually this is a really excellent idea and really, really helpful. So very well worth applying for. Yeah, absolutely.
What else is out there? Well, I mean, of course, the Disability Discrimination Act applies in the workplace, you know, and it gives you the ability to ask for reasonable adjustments. And you know, again we have a thing about that with our diagnosis, the kind of things that help ADHD are obviously any things that you get from Access to Work, by the way, including a rise-able standing desk can be very good for someone who’s very hyperactive so they can stand up or sit down or move around and you can get desks that have bicycles in them and things like that. You know, I don’t know if you get them on Access to Work or not, but they do exist. Or treadmills, you know. I don’t have one, I’d love to have one. Sounds like a great idea, doesn’t it? But I haven’t got one. Or desks that have whiteboards on, and again I don’t have one. But what a great idea just to jot down something that you don’t want to forget and then be able to wipe it off. Things that record meetings and then give you a transcript. Marvellous.
01:11:43 Dr Katy Munro
Or AI
01:11:44 Dr Helen Read
Say what?
01:11:46 Dr Katy Munro
Using AI will be very handy.
01:11:47 Dr Helen Read
AI is marvellous, because the whole thing of having trouble putting a document together. ChatGPT as we know is still not quite brilliant yet, not as brilliant as it will be. But it really goes to the heart of one of the things that’s very difficult in ADHD so I’m very, very excited about it.
You know, satnav also, an older development, we’re not excited about this anymore, but it has actually changed a lot of ADHD people’s lives. Including mine. And I remember the days when I used to have to laboriously plan out my route across pages of the A-Z and then stop every like two roads because I was lost, because I sort of lack a sense of direction. Weirdly, years of ADHD treatment has made that a lot better, which is one of the many other things people don’t know about ADHD treatment, it also improved my performance in my Saturday morning street dance class. Still rubbish, but a lot better than I was. I find it much easier with the sequences of movements and stuff. So yes, it’s remarkable stuff. Really. Yeah.
01:12:42 Dr Katy Munro
I get sometimes, you know how when you’re using your phone for anything you then get targeted adverts. So I’ve been following people on Instagram who have ADHD just to sort of hear what people are struggling with and so now I get ADHD apps targeting me saying, are you struggling with this and that and the other, use this app and it will change your life. And now, I don’t use the apps because I don’t think I have ADHD. And are there any apps out there, do you think it’s worth looking at apps or is that something that you think –?
01:13:17 Dr Helen Read
Well, yeah. I mean I operate a collaborative approach with all of my patients and I always say to them if you find something out there that you think is particularly brilliant send it in and let me know and I’ll put it down. So occasionally I get a recommendation. I have an e-mail for what’s it called, Twobird? There is a service that helps you organise your emails which I don’t use because I have a PA who does my emails for me, but it sounds good because it’s colour-coded and helps you to prioritise and I think it’s called Twobirds. I’ll fish out the e-mail afterwards. There’s two different ones.
01:13:49 Dr Katy Munro
We’ll put it in the note.
01:13:55 Dr Helen Read
I’ll forward it to you so you can put it in your resources. That is recommended, not tried it myself, but it sounds good because so many people say to me, I’ve got 100,000 emails in my inbox. You know, it’s quite normal. And so that one. Sometimes people have those apps and I couldn’t recommend one or other for you because I again don’t use them myself, which stop you from accessing Instagram and these things that we use for procrastination and turns them off for a certain amount of time. I advocate a technique with medication where people use a modified Pomodoro thing, but also appreciate that the forces of procrastination are trying very hard to stop you doing your admin and take it back.
01:14:36 Dr Katy Munro
I know what you mean, but describe for our listeners, what’s a Pomodoro technique?
01:14:42 Dr Helen Read
So the Pomodoro technique is a very well-known technique whereby you allocate periods of time for particular things, short periods of time, not long ones. And you maybe use a timer, which obviously makes it more fun. And you say I’m going to do this for a certain amount of time and then I’m going to do the other thing,and it’s quite a good technique. But I think if you are halfway up the spectrum for ADHD, no doubt the Pomodoro method will be very good for you if you need something. If you have full-blown ADHD or whatever, you can actually be diagnosed, and you bothered to get a diagnosis, that implies that you’re a bit too overwhelmed and exhausted for that to really make a massive difference to you all the time. So I think all these things work a lot better with medication than without. Yeah, yeah, yeah.
And you know, I think in the clinic we recognise that admin is the absolute bane of people with ADHD and that’s the thing. And we have to understand, bizarre as it sounds, that your ADHD brain will literally do anything to stop you doing your admin and it’s as bad as that. And I think once — it sounds ridiculous, but it is actually true. So I think once people conceptualise it like that I encourage them to think about the Greek god Proteus in their heads. He can take any shape whatsoever in order to get away from you, and he has access to everything in your head and he will throw it at you when you start doing your admin, either to stop you starting it because we’ll just do that little thing before we get started. If we do that, we’ve fall into a hyperfocus hole which is non-linear by definition. So that’s how we spend three hours having breakfast before we start our, you know. You can predict these things if you know about ADHD and therefore if you predict them, you can design techniques to stop them. But if you’ve actually got ADHD, they really do need to have a stimulant in to make them work.
01:16:33 Dr Katy Munro
All right.
01:16:33 Dr Helen Read
You know, so, but yeah, they’re all variations of the same technique, and I think with ADHD the battle is with admin.
01:16:43 Dr Katy Munro
I hear that from patients who have found that to be a real major bugbear.
01:16:49 Dr Helen Read
Absolutely.
01:16:51 Dr Katy Munro
Helen, I think we’ve covered all the things in my notes, but was there anything else? Is there any kind of one message or maybe two messages you want to say to the listeners because I think we’re probably coming to the end of this episode now.
01:17:03 Dr Helen Read
Yeah, I do. I just really, really want to say to people that if you take one thing from this episode, just remember that hyperactive little boys are not the last word in ADHD. We have far more trouble with inattentiveness. And so if you have someone in your life or you are that person who just knows that it’s harder for you to remember what people said, to keep in mind things, to be organised, to get to places, you know just consider for yourself that if you are working yourself flat out and making yourself very miserable, that is not a choice.
If it was a choice and you wouldn’t choose it, ask yourself whether it could be better explained by ADHD and overwhelm and things like that, because that will save so much pain and destruction. And ADHD is the most treatable condition on the planet. It’s so phenomenally treatable and we have success rates of approximately 100% in my clinic, which is a damn good success rate, but with the psychological strategies included so that we’re not trying to become, you know, the model 1950s housewife, because that’s not going to work. Because we don’t want to be the model 1950s housework. Not really.
01:18:15 Dr Katy Munro
No, no.
01:18:16 Dr Helen Read
So yeah, it’s so treatable. It’s so easy to treat. And the number of people that say, God, if only I discovered this when I was younger. You know, it’s yeah. So yes, open your mind to ADHD. It really is a thing.
01:18:33 Dr Katy Munro
Yeah. Well, I think that’s a brilliant message of hope to end on. And so again, thank you so much, Helen. It’s been absolutely fascinating. I think I’m going to share with all of my migraine colleagues, the need to think about ADHD and if you have ADHD patients who have migraine, that we’re very happy to see them in the National Migraine Centre, so.
01:18:55 Dr Helen Read
Absolutely. Well, thank you. That’s really good to know. And it’s been a pleasure. Thank you so much and I will no doubt see you soon.
01:19:01 Dr Katy Munro
That’s lovely. Thank you.
This transcript is based on a past episode of the Heads Up podcast and reflects information available at the time of broadcast – some facts may have changed or new treatments become available since.
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