A National Migraine Centre Heads Up Podcast transcript
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[00:00:00] Did you know children as young as 18 months old can suffer from migraine, an early diagnosis always helps? Welcome to the Heads Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr Jessica Briscoe [00:00:24] Hello, I’m Dr. Jessica Briscoe and I’m here with Dr. Katy Munro.
Dr Katy Munro [00:00:28] Hello.
Dr Jessica Briscoe [00:00:28] And today we’re talking about migraine in children and adolescents. So this is actually a topic that’s really close to your heart, isn’t it, Katy?
Dr Katy Munro [00:00:36] Oh, I love to see and help children with migraine. And I think we need to spread the word that children get migraine much more commonly than is recognised.
Dr Jessica Briscoe [00:00:45] Absolutely. I mean, we actually- we do see quite a lot of children. And I think sometimes doctors can get a bit scared, actually, about managing migraine in children. But when you get it right, it’s probably the most satisfying age group to be treating because migraine is something that, we all know, you do have to live with for most of your life. So it’s really important to get it right as early as possible.
Dr Katy Munro [00:01:08] Yeah, I mean, it’s quite common in children. It can occur in about probably between 4 and 10% of children. And very often there’s a family history because as we’ve said before, it is an inherited condition. And if one of your parents has migraine, then you have a much higher risk of suffering from migraine. But if both parents suffer from migraine, well, then you really are likely to get the symptoms. So I’m always saying to people, think about who you’ve inherited migraine from, but also who you may have passed it on to.
Dr Jessica Briscoe [00:01:37] Yeah, and actually, the interesting thing is that migraine in children doesn’t always start with a headache, does it?
Dr Katy Munro [00:01:44] That’s where the confusion can sometimes arise. And sometimes if you don’t have your little radar out to be thinking about migraine and the diagnosis can be missed. So we know that it can be a cause of abdominal pain in children. And there are some studies that show that children with abdominal pain type migraine may undergo a lot of unnecessary investigations and even have surgery because people have been trying to chase the abdominal pain but haven’t really thought round it.
Dr Jessica Briscoe [00:02:14] Yeah, and it can actually be linked with some other diseases of childhood, I don’t know if disease is the right word, conditions of childhood. So things like infantile colic, cyclical vomiting. I see a lot of adults actually you’ll talk back and actually they did have cyclical vomiting syndrome as a child and then went on to get migraine.
Dr Katy Munro [00:02:32] So that’s where children are having vomiting on a regular basis and then they settle down and then they have another attack of vomiting and everybody puts it down to a kind of tummy bug or something like that. But actually, it can be a precursor of migraine.
Dr Jessica Briscoe [00:02:46] Interestingly I had that, I realised a few months ago.
Dr Katy Munro [00:02:50] There are other things which are linked as well. So travel sickness in childhood is quite commonly associated with migraine at a later age. The one about infantile colic, I think is really interesting because we know there’s a really strong gut brain connection in migraine. We hear this from adults who get vomiting or even just bloatedness or tummy pains, but that gut brain connection in babies can give them these sort of spasmodic, really quite nasty, colicky pain. And then they may grow up to have migraine at a later stage.
Dr Jessica Briscoe [00:03:26] What kind of age does it tend to start?
Dr Katy Munro [00:03:28] Well, the youngest patient I’ve seen at the centre started getting his migraine with aura when he was 3 and a half. But I read a study that said that at Great Ormond Street, they’d had a child of 18 months who was diagnosed with migraine. So, yeah, we quite often see children in the sort of late primary school or early secondary school times. And I think the incidence in children is the same in boys and girls up until about puberty. And then, of course, females have hormones kicking in and cycles. And that sort of change in girls means that they tend to then have more migraine than boys after puberty. And we see that later in life with, of course, seeing more women with migraine than men. But yeah, it can affect any age. And like everything in migraine, it can change. So it can change from attack to attack or it can change throughout the ages as children grow and develop. Sometimes it settles down for a long time. Periods, I think, of great stress or change in a child’s life are very commonly associated with migraine getting worse. And of course, you know, when you think of teenagers, they’ve got a lot to contend with and a lot of changes.
Dr Jessica Briscoe [00:04:38] Absolutely. I always think of growth spurts as being quite common trigger as well. So people will often say, oh, yes, they had a- I think, young 7 to 10 year olds or even a bit older. They’ll have said, yeah, they had a bout of attacks a few months ago. And I’ll say, well, did they have a growth spurt? Oh, actually, yes, it did coincide with that. As you said, it’s just a period of great change.
Dr Katy Munro [00:04:58] Yeah. And when children go up to secondary school, of course, the routine changes, stress changes. Sometimes they have a need for more sleep than they’re able to get. So sleep patterns may be changing from weekdays to weekends. They often are doing more vigorous sporting things, and so we often find exercise can trigger migraines. What sort of advice would you give a child who’s getting them, say, after football training or before their netball match?
Dr Jessica Briscoe [00:05:26] So often I would say that they need to- it’s the change in blood sugar level and that expenditure of energy that tends to trigger attacks. So making sure they’re well hydrated before and during exercise, sometimes thinking about having sort of a glucose tablet or a drink around exercise, as well is really important. The tips about eating little and often are particularly important, too. So I often advise them to have a snack- often a high protein snack actually, an hour or so before they exercise. Not so soon before that they’re going to be sick when they exercise, but also enough that they’ll actually have that energy reserve too.
Dr Katy Munro [00:06:03] The other time I commonly stress having extra food is around bedtime, actually, because a lot of kids have quite an early dinner or tea and they then may not eat anything else. And then sometimes they skip breakfast, they rush about getting ready for school in the morning and don’t eat very much. So from the time they have their dinner in the evening to the time they have a proper meal the next day might be quite a long time. And so I’ve had really good results actually, with a couple of kids who’ve been putting in a bedtime snack of something, as you said, either protein or fat, something slow release energy. And it just seems to quieten down that brain irritability and help. I had one who dropped from 15 headache days in a month down to 1, and his mum had simply put in a bedtime snack. That’s pretty impressive. If only that worked for everybody.
Dr Jessica Briscoe [00:06:48] So how does it- apart from the fact that children tend to get abdominal pain initially. Are there any other differences, particularly with diagnosing migraine in children?
Dr Katy Munro [00:06:57] So the pattern of pain tends to be different. Abdominal pain may be the only feature and headache is absent. But sometimes if you question, you will find that the history is of sometimes getting headaches and sometimes getting tummy pains. The headache in adults tends to be more towards the side or the back of the head. But in kids, it’s more towards the front or the temporal areas so either side around the ear areas. The vomiting can be quite prominent. Often children go a bit pale or lethargic, and some of them notice that, like we’ve mentioned before in our episode on phases, the prodromal phase, you can begin to pick up clues. So you may find that children get yawning or irritability or they’re suddenly really exhausted and then the headache comes on the next day. So I think it’s again, it’s always about taking a really good history and listening for the clues and having it in the back of your mind thinking could this be a migraine?
Dr Jessica Briscoe [00:07:55] I find children are very good at describing aura, actually. Not describing so much, but drawing it out and it does often have that sort of kaleidoscope type appearance. I think one thing we wanted to say about aura as well is it’s always important to know with the way the fact that adolescents can be on the pill at a young age. It’s really important to stress that girls who have aura should not be on the combined contraceptive pill.
Dr Katy Munro [00:08:18] Yes, it’s the oestrogen, isn’t it, that causes the problem because there is a theoretical risk, a raised risk of stroke if people get aura. If you don’t get aura it’s not a problem. Let’s just have a pause, because we would like all of you who are listening if you’re enjoying the podcast, to think about giving us a donation so that we can carry on doing it. We’ve loved doing series one, but we really, really want to be able to do series two in the New Year.
Dr Jessica Briscoe [00:08:44] And also we want to be able to get some better recording equipment and also be able to get some more great expert guests to talk to you and give you some more information.
Dr Katy Munro [00:08:53] So if you go on to our Virgin Giving website and just put in Heads Up podcast, you can give a donation. It can be a pound or it can be £100, anywhere in between is lovely.
Dr Jessica Briscoe [00:09:04] Perfect. Thinking about what we can do to help migraine in children and adolescents. So I think the first thing to say is managing- we’ve talked a bit about lifestyle, so obviously being aware of times that would be more likely to trigger attacks so times of stress. You can’t really to do much about growth spurts, and also adding in those sort of lifestyle things that we’ve spoken about. But actually managing the symptoms with medication is important, too. So the first thing to think about is treating the sickness symptom. So usually with something like ginger, which works very well for a lot of children or adults, and also a prokinetic anti sickness, something like Domperidone works quite well.
Dr Katy Munro [00:09:45] Yes, some people use those acupressure bands as well that you can get for travel sickness.
Dr Jessica Briscoe [00:09:49] C bands I think they’re called.
Dr Katy Munro [00:09:50] C bands. Yeah, you can just find those in the pharmacy.
Dr Jessica Briscoe [00:09:52] Yeah. And then thinking about painkillers. So it’s really important not to use aspirin in under 16s, because, you know, it can cause a very rare syndrome, but other types of painkillers can be helpful.
Dr Katy Munro [00:10:05] Yeah. Simple things like ibuprofen can be really helpful for kids. They tend to respond quite quickly to a simple painkiller and resting in a dark, quiet place, so kids’ attacks are often shorter than adults and just need some simple interventions to help them get over it. But rest is really useful. And then, of course, there are triptans available for children. And the two that seem to be most commonly used are sumatriptan tablets or zomig- zolmitriptan nasal sprays. I’ve had quite a few children who use those and quite like them. They do taste a bit revolting. So yeah, but and there are other triptan that have been used for children in different countries and they’ve been studying. They seem to be quite safe. But obviously you’d need to get advice from either a headache specialist doctor or from your GP as to which one your child should try.
Dr Jessica Briscoe [00:10:59] We do also sometimes use preventative treatments in children. So if they’re becoming very severe and debilitating and all of the other things aren’t helping, you can use preventatives too
Dr Katy Munro [00:11:09] The one preventative that I’ve found that people have been given because it’s in the book, really. There’s a few teenagers we’ve come across who’ve been given topiramate just before they’ve been taking exams. So it would just be careful with that one, because although it is recognised and can be useful in preventing migraines, it does also give sometimes a side effect of cognitive dysfunction, which means that children really struggle to think straight, really struggle to study. So it’s about having that conversation with the doctor who’s looking after your child with their migraine before you decide which one they’re going to have.
Dr Jessica Briscoe [00:11:46] And what about schools? What can they do to help?
Dr Katy Munro [00:11:48] Oh schools are really important. I always say to people who have got children with migraine have a chat to school, because the more we educate schools about being sympathetic and understanding of children with migraine, then the more we can reduce the impact on their school attendance. So if the school is aware that a child has migraine, they can make allowances so that they can leave the classroom if they feel a migraine coming on. They can go off and sit in a quiet, dark place, take some simple medication. Very often they’ll recover reasonably quickly and be able to go back into their lessons without having to be sent home. I mean, it depends on the severity of the attack, obviously. But if migraines are coming really quite frequently and having a major impact on the child, then it does count as a disabling condition.
Dr Jessica Briscoe [00:12:35] Yeah, and in that sort of situation, it is actually the duty of the school to make reasonable adjustments as it is for the workplace in adults? And this is under the Equality Act 2010 and the school should be devising a health care plan with the parent and the student to try and make sure that there are reasonable adjustments made to improve the situation. We’ve got quite a lot about that on our factsheet actually.
Dr Katy Munro [00:12:58] We have, yes. We’ve got a list of the reasonable adjustments, including things like an opportunity to drink, having breaks and being aware, I think, of surroundings like glaring lights or computer screens, because that obviously can irritate as well. But yes, have a look on our website for the fact sheet on migraine in children and adolescents. And you can see some more information there.
Dr Jessica Briscoe [00:13:21] Perfect. So what about psychological therapies? Is there any?
Dr Katy Munro [00:13:26] Yeah. Don’t you find that migraine sufferers of any age can get very anxious about getting another attack? And I think kids have enough to deal with which causes them anxiety these days. So psychological therapies for anxiety and for migraine can be quite helpful in helping them reframe and think about their migraine in a different way and maybe find themselves better able to control the attacks. So some schools have counsellors that can be helpful or it may need, you know, a child psychologist or somebody like that if the impact of the migraine is really very severe.
Dr Jessica Briscoe [00:14:05] So I think, in summary, migraine is very common in children. It doesn’t always present as a headache. So sometimes if you’re thinking that your child’s having lots of abdominal pain or lots of vomiting that’s not really being explained. And there’s a strong family history of migraine. It’s worth thinking about.
Dr Katy Munro [00:14:23] Definitely. Definitely thinking about abdominal pain may be coming from the head. So simple measures, rest in a quiet, dark place, making sure that they’re eating and drinking regularly and just some simple painkillers can be all that’s needed. But it’s basically about recognising and making the diagnosis. I think that’s the message we wanted to put across today.
Dr Jessica Briscoe [00:14:47] So Katy spoke to Dr Heather Angus-Leppan, who wrote an article in the BMJ in August 2018 about children and their migraine.
Dr Katy Munro [00:14:59] This morning I’m talking to Dr Heather Angus-Leppan, who is a consultant neurologist and we’re going to be talking about abdominal migraine in children, but also in adults. So thank you very much, Heather, for coming on the podcast.
Dr Heather Angus-Leppan [00:15:13] Pleasure. Thank you, Katy.
Dr Katy Munro [00:15:15] So how did you first get interested in abdominal migraine?
Dr Heather Angus-Leppan [00:15:18] Really because I was interested in the scientific basis for migraine, which clearly leads me to see that, you know, it’s not just a headache. That pain can be in other parts of the body. And, of course, the other symptoms are very much involved, the whole of the nervous system. So from that, looking at referred pain and seeing that some adults can have pain in limbs or in the abdomen during a migraine headache, this led me to read much more about it in children, too. And to see this whole spectrum that we see from babyhood, starting with infantile colic, all of the different manifestations of migraine and how they change over time. I think it’s important.
Dr Katy Munro [00:16:00] So tell me a little bit about infantile colic, because I think a lot of people have never put that together with migraine.
Dr Heather Angus-Leppan [00:16:08] Yes. So this is still speculative. It’s not proven. But there is some good evidence that babies who have infantile colic go on to have other forms of, first of all, periodic syndromes. I mean, abdominal migraine and other manifestations in childhood and then get migraine headaches as adults and that there’s a very high incidence in their parents. So this seems to be a link that maybe a form of migraine.
Dr Katy Munro [00:16:36] OK, and you mentioned some cyclical syndromes and periodic syndromes. Can you say a bit more about what those are?
Dr Heather Angus-Leppan [00:16:43] Yes. So the periodic syndromes are a whole collection of different ways that migraine can present in childhood. And it does seem to be quite age specific. So it tends to be that you get this infantile colic, obviously, when babies are very little. Then they may go on to have abdominal migraine, you know, in their in their 7s, 8s, 9s, 10s. And they tend to grow out of that but about 40% will get an adult form of migraine, usually a headache or an aura, like a visual aura or something else.
Dr Katy Munro [00:17:16] So the children who are in their sort of primary school ages, who are getting abdominal migraine, do you think many of those go unrecognised?
Dr Heather Angus-Leppan [00:17:26] Yeah, I think they’re often misdiagnosed. And that also became quite a passion for me, that these children may be misdiagnosed as having psychological issues. Of course, if you get recurrent pain, you often then get, you know, get upset about it. But they may be thought to have school refusal or something else. And the basis of this is that you don’t see any abnormalities on tests. And we’re all quite hung up on having a test that shows, you know, like something that you can see. And all of migraine is not about that. It’s about what happens to the person and about what’s in the history. So if you are misdiagnosed as having a psychological problem, you don’t get the right treatment. And also, there are about 4-5% of people or children who have appendicectomies, where in fact, the diagnosis is abdominal migraine. So it’s really important. There’s a lack of awareness. And often when I see adults, they will look back and we’ll discuss, did you ever have tummy pains as a child? And when it’s all put together, it’s a real relief. And having the right diagnosis is a huge part of the treatment, because if you know what you’re dealing with, it’s easier to cope with it.
Dr Katy Munro [00:18:45] Yes. And the management of abdominal migraine is really kind of the basic things that we would do for migraine that you see more typically in adults, isn’t it? About lifestyle, eating regularly, sleeping regularly, the routines and things like that. I was recognising what you say about school refusal, I had a patient a little while ago who had had abdominal migraine and headaches from the age of 9 and actually had been punished and sat in the corner, you know, outside the headmistress’ office and then obviously got very anxious and stopped wanting to go to school. And I think that is a common thing. It is the not recognising it that gives such a problem to these children.
Dr Heather Angus-Leppan [00:19:32] Yes. Having pain and then having all of those other elements of feeling punished. I’ve seen that quite, you know, quite frequently and, you know, seeing children who are sent to some very smelly room to to sit there until they decide to come out. And so I think that for parents and teachers to recognise the key features, which are that children are usually very pale when they get it. They may have dark rings under their eyes. They become usually quiet and stop wanting to do their activities. And the pain is usually in the centre of the tummy. And it can last- it said to last, you know, four hours or more, but in some children it’s much shorter than that. And they may find that bright light worries them. All of the usual features that we get with migraine headaches. And they may also have a headache with it, too. So I think just if we can increase awareness of it, we can we can save a lot of suffering for these children.
Dr Katy Munro [00:20:33] How severe do you think the pain is? I mean, can it be the whole range from mild, moderate to really, really very severe?
Dr Heather Angus-Leppan [00:20:40] It’s usually moderate to severe. And then some of the other periodic syndromes also can have very severe forms. The one that is probably the most dramatic is the cyclical vomiting where the person may, you know, really be vomiting dozens of times. And they need to go to hospital. They need to have fluids. And that’s really serious and incredibly unpleasant and just comes out of the blue.
Dr Katy Munro [00:21:03] And are those kind of cyclical vomiting attacks, do they tend to come in a specific pattern or can they be quite random?
Dr Heather Angus-Leppan [00:21:09] They can be quite random. Exactly as for all people with migraine, you’re more likely to get these episodes if you have a change in your routine. I guess we’re always emphasising for people with migraine trying to have a regular routine, getting the same amount of sleep each night, eating regularly, trying to remain hydrated and do regular exercise. So as often as there’s a change that will trigger it. Sometimes it’s not always a stress. Sometimes it’s the opposite. Sometimes going on holidays can trigger it.
Dr Katy Munro [00:21:41] Excitement.
Dr Heather Angus-Leppan [00:21:42] Yes.
Dr Katy Munro [00:21:42] We’re always saying it’s a change in either direction. Stress increasing or stress decreasing can sometimes trigger it.
Dr Heather Angus-Leppan [00:21:49] Yes, absolutely. I think actually for migraine, I see more where it’s actually a decrease in stress. It’s a relaxation after stress that can trigger the symptoms.
Dr Katy Munro [00:21:59] We certainly hear that from adults saying, oh, I always seem to get them at the weekend. So, it’s the same in kids as well, I guess. So any other things that are linked with migraine in children that people wouldn’t necessarily recognise as being linked? I’ve certainly heard that travel sickness can be a part of it.
Dr Heather Angus-Leppan [00:22:18] Absolutely. Travel sickness is a real key question and feature. The other ones that are very common are migraine limb pain. So what we often refer to is growing pains, where there’ll be episodes of moderate or severe pain. And they often occur at night. They can be in the arms or legs and they can move to different parts. That’s a common link, again, with all of the usual features of migraine associated with not liking bright light, wanting to lie in a dark room, looking pale. So, you know, really all the features and the strong family history. So almost always- I don’t ever think I’ve seen anyone who there’s not a family history of migraine. And of course, not everyone who has migraine recognises it. So it’s not always the lie in a dark room, vomiting sort of migraine. It may be headaches that are not quite as intense as that. But, you know, it’s really important to look at that history.
Dr Katy Munro [00:23:16] Yeah, yeah. The limb pain that you were mentioning. So is it likely that that will come on more at a time that children are growing faster? Is puberty a high risk time?
Dr Heather Angus-Leppan [00:23:27] It’s usually a bit before that. It’s not really related to growing. We call them growing pains.
Dr Katy Munro [00:23:33] But that’s a misnomer.
Dr Heather Angus-Leppan [00:23:35] I think that’s a misnomer. Yeah.
Dr Katy Munro [00:23:36] Oh, that’s really interesting. And do you think adults get that periodic limb pain as well?
Dr Heather Angus-Leppan [00:23:40] Yeah, they do. Yes, they do. We’ve looked at that in series and about one to two percent of adults with migraine will have limb pain. You have to really ask the question specifically. Because they may not, you know, be thinking about it and they may not recognise its association. It’s really important to take a thorough history, as you know. That’s your passion.
Dr Katy Munro [00:24:02] Yes, it certainly is.
Dr Heather Angus-Leppan [00:24:04] And the other ones- some of the other forms are much less common. But you can get episodes of vertigo in children. They’re just suddenly get really dizzy. They look so sick, pale and unsteady and quite dramatic. And that can also be a manifestation.
Dr Katy Munro [00:24:21] And it’s that migraine or do they get the benign positional vertigo that we see in adults as well? Or is that a separate thing?
Dr Heather Angus-Leppan [00:24:30] It’s a separate thing. Again, you know, people with migraine in adulthood are often getting dizziness. So this is like a childhood version of that.
Dr Katy Munro [00:24:40] So we’ve done an episode on vestibular migraine in the podcast, and I’m certainly aware that that is often quite poorly diagnosed or we’re a bit slow to pick it up in adults. So we need to be asking questions about dizziness in children as well.
Dr Heather Angus-Leppan [00:24:56] Yeah. And I think if you can take the family history, the other adults, parents and brothers and sisters may have had other manifestations that they hadn’t, you know, because they were in the past. They weren’t thinking about them now.
Dr Katy Munro [00:25:08] Yes. I always say to patients when I’m asking about family history. Think about your ancestors and your descendants. Just because you’ll usually find somebody with some sort of symptoms lurking in your genealogy. That’s excellent. Thank you. Any guidance about how parents should manage it if they think that their children have got abdominal migraine, maybe with very little in terms of headache? So I certainly have parents who are very worried that this might be coeliac disease or IBS or something like that. And they go off and they get lots of investigations and, you know, but they haven’t had very much advice on how to actually manage the attacks. So what guidance would you give them?
Dr Heather Angus-Leppan [00:25:52] I think it is important to get a very clear diagnosis. And you need an expert, a GP or a neurologist or paediatrician to really make a very definite diagnosis. If all of the features are there, you don’t need any investigations. But some people will have investigations. If they’re going to be done, then do all of them get them out of the way, be content that’s the right diagnosis. And then in terms of management of the attacks, it’s really important to, first of all, reassure and explain to the to the child. Then usually lying in a dark room quietly, maybe with a hot water bottle is helpful and paracetamol or ibuprofen can be very, very useful. If people are going through a stage where they’re getting lots of episodes, they go on to a preventive treatment. Things like pizotifin or propranolol can be used very effectively for a short period. But, you know, a lot of the people who have this won’t have many attacks and they can be treated simply.
Dr Katy Munro [00:26:55] Just the acute attack. What about the vomiting? What would you advise in children with vomiting in terms of medication?
Dr Heather Angus-Leppan [00:27:04] I think if there’s a lot of vomiting, often they may need to go to hospital if there’s a lot of it. If they’ve got one of these cyclical vomiting, definitely. And if it’s with the abdominal migraine, usually that will settle as the pain settles.
Dr Katy Munro [00:27:18] As the migraine settles. Yes. We sometimes advise Domperidone or something like that. And I have come across children being given ondansetron, if they know that they get severe vomiting, trying to get in very early in the attack.
Dr Heather Angus-Leppan [00:27:32] Yes. That’s a good thing to have.
Dr Katy Munro [00:27:37] Very helpful. Yeah. What about the use of triptans in children? Do you use that?
Dr Heather Angus-Leppan [00:27:43] Well they can be used. There’s some, as you know, the trials of using it for migraine headache in children, they can be effective.
Dr Katy Munro [00:27:52] Yes. So a lot of the common things that we use for migraine can be used in children, obviously adjusting doses for ages and stages. But it’s thinking about treating the migraine rather than I’ve occasionally seen children who’ve been given codeine for the tummy pain and that’s in our book would be a big no, no. Do you agree?
Dr Heather Angus-Leppan [00:28:12] Absolutely. Yes. Firstly, really opioids aren’t good for migraine overall, but then to give them to a child, you know, they’ve got a lot of side effects and also they’re going to make them constipated, which might cause then a different sort of tummy pain.
Dr Katy Munro [00:28:27] And they sometimes make the vomiting worse as well, don’t they?
Dr Heather Angus-Leppan [00:28:30] Yes.
Dr Katy Munro [00:28:30] I just strongly warn people all the time. It’s a bit of a mantra. Don’t use codeine for migraine ever. Or for anything else, if you’ve got migraine really. Well, that’s been really helpful. Thank you so much, Heather, for talking to us today. And we will be on the lookout for children with abdominal migraine and hopefully pick them up before they’ve struggled for too long.
Dr Jessica Briscoe [00:28:54] We see quite a lot of children here at the National Migrant Centre, and now we’re joined by some who are going to explain their experiences with migraine.
Swati [00:29:05] Hi, Isla thank you for joining us on our podcast today. We understand that you’ve been getting migraines. When was your first migraine?
Isla [00:29:12] My first migraine was June 2018, I think.
Swati [00:29:19] Okay. How old were you when you got one?
Isla [00:29:21] I was 9.
Swati [00:29:23] OK. And was it like a typical headache, sort of migraine?
Isla [00:29:28] Well, it was technically because I was in a car crash. One of the cars was pulled to the side of the road and it just got all messy. And we went to the GP. And it all started with whiplash. And then until January, I had small headaches. And I didn’t tell my parents about it because it wasn’t bothering me that much.
Swati [00:29:57] And did you tell anybody? Did you tell anybody in the school?
Isla [00:29:59] No.
Swati [00:30:01] So what kind of headache? Would you be able to explain that?
Isla [00:30:05] Well, the first bit was stomach ache, and then it slowly formed into headaches as we went into February. And then I had a really, really big one. They still didn’t know what it was. And my mum had to call an ambulance because she was just in so much shock that she didn’t know what was going on.
Swati [00:30:26] Was that in school when you got your headache?
Isla [00:30:30] No, that was in half term.
Swati [00:30:31] And how often do you get these headaches?
Isla [00:30:35] I have had them for over a year, non-stop pain. I have chronic migraines.
Swati [00:30:43] Like every day?
Isla [00:30:42] Every day. I haven’t had a break for a year and a couple of months.
Swati [00:30:48] We’ve got Isla’s mum as well on the podcast.
Sophie [00:30:50] Hi I’m Sophie, Isla’s mum. When we went to see the- we could see that Isla wasn’t herself. She looked grey and she just wasn’t herself. And from the summer last year after the initial accident, I was going to the GP every couple of months saying she’s just not right and had run tests and they’d say, I can’t see anything wrong.
Swati [00:31:08] Was it because she was getting those stomach pains?
Sophie [00:31:10] Yes. And they were looking at all different things.
Isla [00:31:12] They had not a clue what was going on.
Sophie [00:31:12] Not a clue what it was. No one could figure it out. I said she’s fading- I could see that she just wasn’t- her concentration was going it was affecting her schoolwork. Isla’s very studious. Just wasn’t herself.
Isla [00:31:25] My maths grade dropped. I was at the top and I went to down to the bottom.
Sophie [00:31:32] Then you pulled it back again.
Isla [00:31:32] Yeah.
Sophie [00:31:35] For us it was going to the GP, the GP not knowing. And then this massive headache came and then very soon after you had back to back very, very big headaches and we ended up being admitted to a children’s hospital.
Isla [00:31:48] We were there for about three weeks.
Sophie [00:31:51] Three weeks, almost.
Isla [00:31:53] And we were about to go home when- we weren’t discharged. We were allowed to go home and then come in the next day for the rounds for the doctors. And then we were about to go home and my mum and a nurse were chatting and I suddenly fell to the ground in so much pain. It was just so much. It was so much. My body couldn’t handle it and I lost the ability to walk.
Swati [00:32:21] Oh my gosh, that sounds awful. Sorry to hear that.
Sophie [00:32:27] We would watch Isla and they thought she’d had a stroke because she couldn’t really move her arms or her legs and her face was drooping on one side. But actually she quite quickly got her face back and her arms back. But she’d lost the ability to be able to move her legs. She could feel but she couldn’t move them. That led to lots of scans.
Swati [00:32:42] So that must have been really scary.
Isla [00:32:45] It was. I just didn’t know when it was going to stop. It was still scary, the migraines, and I didn’t think it could get any worse. Now, I’ve learnt there’s a lot out there. There’s a lot that the world can throw at you, but it did get better. I mean, after a month, it got a lot better. I eventually started using crutches and then I started walking, running and it was so much better. And they still didn’t- the doctors knew that it was migraines, but they didn’t really specialise in migraines that much.
Sophie [00:33:24] They were just a bit confused. And then that made us all anxious. And then we found here, the National Migraine Centre.
Isla [00:33:31] And that’s made such a big difference.
Sophie [00:33:33] The first appointment where we ever met someone, a medic, who just went, yeah, I’ve seen this before. And it was the first time in weeks we had a professional who wasn’t thrown by what we were describing and actually understood what was going on. Actually, had a plan and explained to us how the migraines work, why they would have got worse with some of the changes, the lifestyle changes that we’d put into place over the previous six months and why they would be getting better. And just to have the answers for us in a way that we didn’t have before, and I think that that created a real bounce that allowed us to start the medication, put things into place, and that really helped your legs to come back into action again.
Isla [00:34:18] Yeah.
Swati [00:34:18] What were those? If you don’t mind me asking, what were those lifestyle changes that you think you’ve done from your end and that Dr. Munro probably highlighted?
Isla [00:34:28] Knowing that it’s going to get better.
Swati [00:34:34] Being positive about things getting better.
Sophie [00:34:36] What do you also have to do? You have to eat regularly?
Isla [00:34:38] Yeah.
Swati [00:34:39] No skipping meals, making sure you’re having loads and loads of water. Hydration.
Sophie [00:34:45] For us, one of the changes we’d made was a much more flexible bedtime previously for Isla and actually that turned out to be making it worse. And so by putting a regular bedtime back into place, it really helped you in terms of your energy levels and helped everything to your body knew when it was going to get sleep, and it helped everything to just calm down because they had- the reason she lost the function in her legs was a thing called a functional neurological disorder, which is basically an irritated brain. So the messages can get through, but they get muddled. And so we had a lot of getting it all settled. You also went..?
Isla [00:35:21] To an osteopath.
Swati [00:35:23] Oh, OK. How did that go?
Isla [00:35:24] So they did cranial osteopathy and it really helped because at first I was really tense and she kind of made it a lot better in a way. And the thing that really helped push through was knowing that it’s going to get better. And then my mum found a website and it talked about tons of people with chronic pain. And it just helped so much. It made such a difference knowing that you’re not alone. There are other people out there, they know what you’re going through. I’m one of those people that know what other people out there are going through.
Swati [00:36:07] You’re really strong. You know that, right? You’re really, really strong. And I would say hold on to that. That’s the most important thing, because that just keeps that confidence and that motivation alive. And that’s what a lot of people tend to need, that hope. Yes things are going to get better. And I think the fact that you’ve understood this so young, things will get much better because you’ll be able to manage it much better.
Isla [00:36:36] Yeah.
Swati [00:36:36] How have your migraines impacted, you know, going out with friends and going to school? How has it impacted that side of your life?
Isla [00:36:46] Well, when I was in hospital, I received a card from my class and it was really sweet. But the thing is, inside, they had their own individual messages and my best friend put tons of love into her message. And it just made such a difference knowing that she hadn’t moved on, she still noticed that I was gone. And it just made such a different. Friends were was still there. Just because you’re not there doesn’t mean they don’t think about it.
Sophie [00:37:23] What do you have to remember every day? You don’t have any choice. You have to remember your medication, don’t you?
Isla [00:37:27] I have to remember my medication otherwise I get into big pain. And in a way, it’s a bit embarrassing. But, if you think it’s embarrassing, I get you. You’re not alone, but then I’ve learnt to handle it.
Swati [00:37:42] OK, what would you say to somebody who’s your age out there struggling and just trying to sort of cope with it? What would you say to them?
Isla [00:37:51] I did that for about six months and it doesn’t get you anywhere. First, if I told my parents the first time I got it, it wouldn’t be this bad because if you don’t tell, it’s only going to get worse. Then there are doctors like at the National Migraine Centre here in London that are there, that have experienced it. They’ve seen lots of patients that are just like us.
Sophie [00:38:19] They understand. They see the person. I know- when she was in hospital, Isla when she sees the doctor, she doesn’t want to be seen as a puzzle to try and work out. You wanted to be seen as the person and to try and link everything together to try and understand it. Because when everyone looks confused, when they’re trying to work it out, it just makes you more anxious. So the important thing for us was to- being in contact with other people with migraines and hearing from them. That’s been really important. What was the book that you read that really helped you? There was a book that we found. What was it called?
Isla [00:38:55] Zoe the migraine hero. It shows what everyday life looks like and it shows it can get better.
Swati [00:39:04] Interesting.
Sophie [00:39:05] It’s a schoolchild and it’s one of those sort of cartoon strip books. It has her going to school on a good day, what she calls a so-so day. And then she has the bummer days, doesn’t she, where she knows that it’s going to write the days off. And for you, that was the first time you’d seen another child depicted as having a migraine. And that for her was a real turning point.
Isla [00:39:29] And also, the author had migraines. Not showing that she was trying to picture what migraine looked like. She knew what it looked like. She did experience it.
Swati [00:39:41] Yeah, that’s probably the reason why she did the book.
Sophie [00:39:45] Yeah, I think it’s the hidden nature of it, because when Isla wasn’t walking, it was very visible that there was something wrong. And now she is walking, it’s much more hidden and they say, well, you can’t still have a headache or how can you have a headache even now because you’re doing your work. And if she didn’t work and go to school when she had a headache, she wouldn’t be going to school at all. So she needed to find a way of distracting herself and to get on with it. And it frustrates you sometimes because it stops you from doing the things you want to do. Sometimes you have to- she went away on a residential and we had to give them a huge list of things that she could do. But we also have to accept that on the residential, she wasn’t going to be able to stick to everything and that was going to be a fall out. And that weekend she had the fallout that we were expecting because we couldn’t stick to it. And it’s swings and roundabouts. You have to do the balance between the two.
Swati [00:40:36] Thank you so much to both of you for joining us on our podcast.
Isla [00:40:40] You’re welcome.
Swati [00:40:44] Hi. Today, we’ve been joined here by Sebastian. We’ll be talking to him about his migraines. How old were you when you started getting your migraines?
Sebastian [00:40:52] Around eight and a half to nine years old.
Swati [00:40:55] OK, and do you remember your first migraine attack?
Sebastian [00:40:59] Oh, yeah, um, I do, actually. I was really confused to what it was because I felt pain in my head and eyes. I didn’t know what it was. And my mum got pain in her head as well so I asked her what it was and she said it’s probably a headache. So then she gave me medicine and it went away.
Swati [00:41:18] And how would you describe your typical attack? When you get a migraine, what happens?
Sebastian [00:41:24] So around 20 minutes- 15-20 minutes before I get the migraine, I know I’m going to get the migraine, so I try to treat it then before I do it once I properly have it. So yeah. And halfway through the migraine, I usually start getting pain in my stomach.
Swati [00:41:45] Oh OK. And do you feel that you feel sensitivity to light or sound or smell, things like that?
Sebastian [00:41:53] Very, very strong smells, yes. And yes, sounds and light. Especially light. Yeah.
Swati [00:42:00] Have you ever had an attack when you have been in school?
Sebastian [00:42:02] Oh yeah. Loads of times.
Swati [00:42:04] And have the school been really helpful with that?
Sebastian [00:42:06] Um apart from ibuprofen, no.
Swati [00:42:09] OK, so do you have a space in the school where you could just sort of lie down when you have an attack?
Sebastian [00:42:13] Yeah, yeah.
Swati [00:42:14] OK, and a typical attack if you have it in school, how does that interfere with your school life?
Sebastian [00:42:20] Um, I mean, it doesn’t interfere too much apart from I might miss, like maybe half an hour to 40 minutes of the lesson, but…
Swati [00:42:31] And have you ever had an attack while you’re playing or you were out with friends?
Sebastian [00:42:39] Yeah a lot in Games when I’m doing my own lessons in sports. Yeah. I just take it because during my lesson I don’t want to miss any of it because it’s a sports lesson. And then once I get up there, I mean I’m going to have to stay there for a while then I’ll miss everything like, I’ll have to get unchanged during the most important time of the day where I have, basically homework at school, which is prep. And if I miss that i’m getting a detention the next day, so. I mean, that’s not good.
Swati [00:43:10] And have you ever felt like your migraines stop you from doing something?
Sebastian [00:43:18] Yeah, a lot of the time.
Swati [00:43:19] What kind of things would you say that they stop you doing?
Sebastian [00:43:21] Going outside, doing some sport sometimes and cross country because of the light and the noise.
Swati [00:43:29] Thank you so much for joining us today.
Sebastian [00:43:31] You’re welcome.
Dr Jessica Briscoe [00:43:34] Thank you for listening to this Heads Up podcast episode, our next podcast is going to be our final for the series, and it’s our special Christmas episode. So please join us in talking about some of your myths that you would like us to dispel and for answering some of your questions with our headache consultant, Dr Sara Miller.
[00:43:58] You’ve been listening to the heads up podcast, if you want more information or have any comments. E-mail us on info@NationalMigraineCentre.org.uk. Til next time.
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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