S4 E11: Festive Special

Festive Special

Series 4, episode 11

Heads Up is the award-winning podcast series on all things headache, brought to you by the National Migraine Centre.  Produced by leading headache doctors, it’s the trusted source of information and support for all those affected by migraine and headache.

You can find our episode transcript below. Want to listen to the podcast? Just head over to our Heads Up section here for hours of episodes that can help you manage migraine and control your headaches.

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Transcript:

Dr. Rebecca Walker [00:00:00] Hello. My name’s Rebecca Walker and I’m a headache specialist doctor here at the National Migraine Centre. Today our clinic has more people needing appointments than ever before, and we want so much to help everyone who needs us. But we face the biggest crisis in our 41 year history. And without your help, everything that we do could be at risk. This year the COVID pandemic has left us with devastating financial losses. Our income has collapsed and our future is in doubt. Everything we do from providing effective, accessible migraine treatment to our education work like this podcast could be at risk. We hope that we’ve been able to help you in the past. Now we urgently need your help. We receive no government or NHS funding. We rely on those people like you who understand that migraine is so much more than just a headache. At this time of giving can you spare just one more gift to protect the National Migraine Centre and guarantee a better future for people affected by migraine? Please, if you can, don’t delay. Don’t wait until later. Act now. Make a gift through our website. Just search for National Migraine Centre or just head over to the link in the blurb for this podcast for a quick and easy way to donate. Please, we need your help. Do something amazing today. Your kindness could protect our vital work for those people who depend on us. Thank you.

 

[00:01:24] Welcome to the Heads Up podcast brought to you by the National Migraine Centre. The only UK charity treating migraine and headache.

 

Dr. Katy Munro [00:01:36] Welcome to this final episode of our series for Heads Up, and this one is particularly festive, so we’re doing something different today. I’m really delighted to have four guests with me today who are going to talk about their experience of migraine and what’s been helpful and various other topics that we’ll get onto as we chat. So welcome to all of you. Lily, Amy, Abi and Jess. And I’d love you to just tell our listeners a little bit about yourselves, starting with Lily.

 

Lily [00:02:09] Yeah. Thanks so much for having me. So I’m Lily. I got my first migraine at 19. I was initially told it was a tension headache and referred to physio. And then at about 26, they kind of came back and got worse and worse and worse until I was diagnosed with chronic migraine at the age of 28. And then I spent most of 2019 and 2020 in bed. The pandemic didn’t change my lifestyle very much, unfortunately, but I’m making some roads towards being able to do a bit more with my life and get them a bit more under control now.

 

Dr. Katy Munro [00:02:49] And Amy, welcome.

 

Amy [00:02:52] Hi. Thanks, Katy. My name is Amy. I run the_migraine_life Instagram page and I didn’t have migraine growing up at all. I think I had my first migraine attack when I was 20 and didn’t have any others until the start of 2015, when I woke up with head pain one day that just sadly never went away. And so I pretty much became chronic overnight. And thankfully I was diagnosed pretty quickly and basically spent the last, hate to even say it out loud how many years, but almost seven years and learning to live as best I can with this condition and trying so many numerous treatments and therapies along the way, which I’m sure we’ll discuss later. But I’m pleased to say I’m very much- I feel like I’m finally in the stages of recovery. And over the last few years I’ve made huge progress and I’m starting to finally get my life back on track, which feels pretty good. So yeah, thanks for having me.

 

Dr. Katy Munro [00:03:55] So it’s been a long journey for you, Amy.

 

Amy [00:03:58] A long long journey for sure. Still not anywhere near at the end of it, I don’t think. But in the right direction, which is the main thing, I think. Yeah.

 

Dr. Katy Munro [00:04:07] Yeah, That’s really good to hear. Abi, what about you? Tell us a bit about you.

 

Abi [00:04:13] Hi, everyone. I’m Abi Stevens. I’m an illustrator and product designer. I make a lot of pins and products that are designed at empowering other people with disabilities. One of- the first one that I made was a migraine warrior pin. I started getting migraines in puberty when I was about 13 and over the years they sort of gradually increased in number. And when I was at university, I had start taking preventatives. And then over the few years after university, they kept getting worse and worse and worse, until I had a very dramatic increase in severity in 2018 and had to be signed off work. And like Lily, I spent most of two years in bed. So yeah, I kind of was just starting to be able to leave the house again when lockdown hit. So I still feel like I’m trying to figure out where my limits are, what I can do and what I can’t do. Tried lots of different medications, still trying to find something that works really well for me. But yeah, it’s good to kind of look back at where I was in 2018 and think, well, you know, I’m not still stuck in bed all day, every day. So, you know, making some progress.

 

Dr. Katy Munro [00:05:38] That’s also very good to hear that things are a bit better, although not quite where you want to be yet, Abi. And just for our listeners, Abi is the really talented illustrator who did the lovely image for our Heads Up podcast, which we’ve been delighted to have to show everybody the way when they’re looking for our podcast. And then Jess. Tell us about you.

 

Jess [00:06:07] I’m Jess. I’m a musician and artist. I’m currently studying- well, I’m meant to be studying at the Royal Academy of Music. I’ve just started, so I’m in my first year. And I’ve sort of had migraines all my life, and they’ve just got gradually worse and worse and worse. So like, for all of sixth form, like, I barely could go to any of my classes or anything. And when I had all of my auditions to go to Conservatoire, I couldn’t even practice and I remember, I was just like, sight reading pieces in my auditions, which is so bad. I mean, I’m very lucky and, like, thankful that I go into places and stuff like that, but it’s really hindered me as a musician, having a migraine. And then, maybe like the last year, it’s just been awful. And these last three/four months I’ve just been in bed, like, the whole time, just in constant pain. So, yeah, hopefully it will get better. But at the moment, it’s pretty migrainey.

 

Dr. Katy Munro [00:07:11] The impact on you, Jess, is huge at the moment, isn’t it?

 

Jess [00:07:17] Yeah. I’ve had quite a lot of talks about deferring this year, so, I mean, hopefully I won’t have to. But I’ve been told by so many people, ‘oh, you know, like it’s not possible to sustain a career as a musician like this’ because I just- you know, it’s just so unreliable having migraines. Like I can often power through rehearsals and stuff, you know, I’ll be like, ‘I’ve got a migraine but I can do this rehearsal’ and then I’ll get half way through and I’ll be like, ‘look, I can’t read the music now, like my vision is gone. I’m really sorry. Like, I can’t even coordinate’. I play trombone and I can’t even coordinate to play it. So, you know, I’ll have to leave. And I’ve been- like, recently, I’ve been kicked out of the orchestra because they were like, ‘well, you know, like you’re unreliable’. Which, you know, is fair enough. Like, they need to have consistent players, But at the same it’s just so frustrating how much migraine impacts everything.

 

Dr. Katy Munro [00:08:03] Jess, I was going to ask you about  your instrument. I know you play the trombone as your first instrument. Do you have a second instrument? Are you a multi instrument player?

 

Jess [00:08:21] Not really. I play piano, but not very well. I used to play classical guitar when I was younger, and I can double on euphonium, which is like a small tuba.

 

Dr. Katy Munro [00:08:31] I can’t imagine trying to blow into a horn whilst having a migraine.

 

Amy [00:08:34] I was just thinking the same. Nevermind the noise and everything else.

 

Abi [00:08:36] I can’t even blow my nose, let alone the trombone.

 

Jess [00:08:43] Yeah, because I went to a specialist music school for sixth form. So it was basically just trying to get through rehearsals, wearing my green wrap around sunglasses, just being like, ‘oh my God, I’m so noise sensitive and here I am like, you know, with tympani behind me and stuff’. Just yeah, not good.

 

Dr. Katy Munro [00:09:03] So the noise sensitivity is one way that it impacts on you. Anybody else? Is there anything else that’s particularly impacted on you from the point of view of symptoms?

 

Abi [00:09:14] Light sensitivity is a really big one for me. I pretty much live in sunglasses. I really struggled- before I went freelance, I was working in a school and the bright LED lights overhead and then the noise as well. I just couldn’t be there. Yeah and now, like, as a freelancer, I want to be able to go to events to sell, you know, markets and conventions, that kind of thing. And I keep running into hurdles when I realise that I’m trying to go into a space where it’s going to be really noisy, really bright, really hot, full of people, like probably quite stressful. And I’m supposed to be there for like, you know, from 9 a.m. to 6 p.m., three days in a row. And I’m just like, I can’t do that. I definitely can’t do it without help. So yeah, like it’s just the sound and light sensitivity alone throw up a lot of hurdles in people’s work.

 

Dr. Katy Munro [00:10:13]  Do you wear sunglasses all the time?

 

Abi [00:10:16]  I try not to. I don’t so much at home because I’ve got dimmable lights but I’m visiting at the moment and the lights here are really bright, so I’m wearing them even indoors.

 

Lily [00:10:29] Yeah. It’s such a thing to have to factor into your day. I really sympathise with the photosensitivity. And I live in London and the light on public transport and in so many of the shops is just dreadful. Like if I have to go and do a food shop, I know that’s going to be the only thing I get done that day with the combination of the lighting on the bus and the lighting in the shop. It will just completely throw me out. Or if I have to go on the tube with like the change in temperatures and stuff, I know that’s going to be the only thing I get done with my day because it will just floor me.

 

Jess [00:11:06] I just find the tube like the hardest thing. The tube is awful. And I have my sunglasses on and I have my- because as a musician I have like, moulded hearing protection and I have like, the strongest filters in so I can barely hear anything. And it’s just awful. I’ll be, you know, I’d be like, ‘Oh, I’m doing really good. Like maybe an eight of ten’ if 10 is a clear head and I get to Conservatoire after getting on the tube and I’m like, ‘oh my God, I’m a four now, like, I just have to go back’. I’ve spent so much money on taxis since being in London because oftentimes it’s like the only thing I can do. If I’m just about to break down because I’m in so much pain I’m like, I’ve just got to get a taxi. The tube, even just for four minutes it just destroys me.

 

Abi [00:11:44] I think it’s deceptive as well because I forget how much other environments affect me because I’ve been stuck at home for like three or four years with dimmable lights and all the blinds down and like sunglasses and ice packs and all this kind of stuff. And now we can actually go out of the house again. I keep going out and just being surprised by how difficult I find it to just be there.

 

Amy [00:12:04] It’s so hard when you’re outside of your own environment, isn’t it? We get so used to, I think having- you almost realise this when you go somewhere else and like, ‘oh, people have got overhead lights on, why have they not got their lamps on’ and ‘why is the radio playing in the background?’ And so many things that I guess we take for granted in our own homes.

 

Abi [00:12:21] I end up getting taxis a lot more than I used to as well. I think it’s one of the biggest things about planning trips and stuff is what happens if I get a migraine when I’m there? Am I going to be able to drive home if take a car? Am I going to be able to take public transport? You have to have contingency plans and contingency plans for everything you do, which is tiring.

 

Amy [00:12:43] I found in the first few years of having migraine and because I was so new to it, I didn’t even know noise sensitivity was a thing. All I thought people talk about was light sensitivity. And my noise sensitivity got so bad to the point that not only would I eat on my own because I couldn’t cope with the noise of anyone else eating, I would eat with earplugs in, on my own, in a quiet room.

 

Lily [00:13:07] Oh, what a genius idea.

 

Amy [00:13:09] It got so bad that I thought, I need to somehow disrupt this cycle.

 

Lily [00:13:14] That’s fantastic.

 

Amy [00:13:14] Because it gets worse and worse and similarly, I think, unfortunately with the sunglasses and the dark glasses that kind of sometimes escalates the problem, even though you feel like there’s no other option. And eventually I did- I have, I think partly just from improving management of the migraine in some ways has helped reduce the noise sensitivity. But actually gradually exposing myself to noise over time has really helped. And I think a lot of the advice I was given initially was to block out the sound, the sound is a trigger. For noise sensitivity, specifically actually slowly exposing has helped me the most. And now, you know, I can actually eat in a cafe, which I never thought I would with other people, you know, if there’s not loud background noise on and not need earplugs and things, so. I kind of just want to put that out because I know, you know, I hope for anyone else who’s listening, who just is sat in the dark in sunglasses and earplugs, like it doesn’t have to be that way forever.

 

Dr. Katy Munro [00:14:18]  I suppose- we see a lot of patients with vestibular migraine, with dizziness, and the brain actually does manage to suppress some of those dizziness symptoms gradually. So I guess that’s partly what you’re saying, Amy, is that, you know, if you’re avoiding it altogether, your brain doesn’t have a chance to suppress it. But it’s about being in an environment I guess, that you can control, isn’t it? Do it in a gentle way that’s not suddenly triggering. Have you- I don’t know if anybody has downloaded the SoundPrint app. So there’s an app called SoundPrint where you go, if you’re in a cafe or in a restaurant or museum or wherever you are, you can take a decibel reading and then ping it off and they put it on a map and it tells other people who have that app whether that’s a loud place or a quiet place.

 

Abi [00:15:14] That’s amazing, I need that.

 

Lily [00:15:16] Clever! That’s so clever.

 

Dr. Katy Munro [00:15:16] So yeah, free app. Download it, girls.

 

Amy [00:15:21] The other thing that I always think is so misunderstood by people who don’t have migraine about the noise sensitivity is often people assume it’s just to do with volumes. They’re like, oh if the radio is on loud. And actually the thing that I find the hardest is if I’m in a room, if there’s any background music and there’s a conversation and anything else, it’s almost my brain can’t filter out all the different things. So people sometimes will turn the radio down. And actually that doesn’t necessarily help. It’s just there’s so much going on our brains can’t cope with it.

 

Abi [00:15:55] It’s like a combination of the brain fog and the noise sensitivity is that you can’t distinguish the sounds. I have ADHD as well as as well as migraines, and that also leads to problems with like separating noises in loud spaces and focus and stuff and they really are a bit of a double whammy. So, yeah, I agree.

 

Jess [00:16:20] I got told the other day by my- I’ve got a new neurologist now. He’s really good. And he was saying migraines are actually like, yeah, it’s obviously a pain thing, but it’s also a sensory disorder. So it just, it made so much sense so the thing you were saying like if there’s background noise, but there’s a conversation and, I don’t know, cars in the distance, that’s too many sensory inputs, I can’t deal with that and he was saying, you know, smell like that’s a massive thing for me anyway. And like light and hearing, touch, that’s also like a sense as well. And also like dizziness and everything like that, I can’t remember the word for it, but he was saying, where you feel in relation to other things, it’s like another sense which is also really impacted by migraines. So I thought thinking of it in terms of a sensory thing makes quite a lot of sense.

 

Lily [00:17:05] That’s a really helpful way of thinking about it. I find that depth perception thing really debilitating. I think it’s often called like Alice in Wonderland syndrome because it’s like when you’ve shrunk- apparently it’s where Lewis Carroll got his inspiration for the Eat Me? Drink Me? Stuff, when she changes size. And I have to like bum shuffle down the stairs or crawl on the floor because I just can’t tell where I am in space. And it’s like if I try and go down the stairs, it’s actually really dangerous. And I find that really terrifying. Like, Abi with what you were saying about, you know, having to make contingency plans and stuff when you just can’t trust your senses and you’re, you know, 2 hours away from home or whatever on your own. Like, it’s a really terrifying situation to be in sometimes.

 

Abi [00:17:45] Yeah. Not being able to predict and like, know what your body is going to do is difficult. And I actually stopped cycling for similar reasons because the depth perception. And it’s like drinking and driving. You can’t tell how impaired you are. I get on a bike thinking that I’m not that bad and then I crash because I was closer to a post than I thought I was or something.

 

Amy [00:18:09]  I was going to say it just shows how varied migraine is as well, because that’s something it’s really interesting to hear about. It sounds incredibly debilitating, but I’ve not experienced that myself. But the thought of, you know, not being able to get down the stairs easy. I mean, I’ve struggled to walk and stuff, of course, down the stairs with pain. But it’s so complex and it debilitates in so many different ways that people don’t necessarily think of.

 

Lily [00:18:35] It’s so funny how you learn things now as an adult. And now I can like reflect on things like you say, clumsiness, and that’s just like a total light bulb moment. Like I am often covered in bruises from bumping into things and stuff. And, it’s just, you know, I’m quite limby, I’m quite long like, I just kind of assumed that, you know, I was just was clumsy. When you were saying about smells making it really hard to concentrate. I remember as a teenager having a teacher that, I mean, she probably didn’t smell but like I could smell- like it was the room or something, I don’t know what it was, and I can remember these lessons so vividly because I just could not concentrate. It was so overpowering. So it’s kind of interesting when you learn these things to be able to look back and be like, ‘Oh, that makes sense’.

 

Dr. Katy Munro [00:19:19] I had a little girl in clinic a while ago and she was describing that when she was getting her migraine coming on, that it felt as if everything around her was going either in slow motion or in speeded up, which was a quite an unusual thing as well. So it’s very interesting all these different ways that the brain is affected. I was talking to somebody the other day about brain fog and she was saying that that is often also linked not just with not being able to think, not being able to find the words, but also with clumsiness. So that would go in, I think with what you’re all saying. Yeah. It’s those multiple effects, isn’t it? And sometimes those sensory things are there all the time, not just when you’re in the middle of an attack, that’s the annoying thing isn’t it. I was out with- I get migraine attacks and I was out with a friend who gets them as well and some other friends this morning having a walk and, of course, the sun is really low in the sky at the moment. And we went into a cafe for coffee and we had to move tables three times because the sun was beaming in and the two of us were like, ‘Nope, can’t sit here’. The poor lady was going round and doing her COVID table wiping, going, ‘I’m having to clean all these tables and you’ve sat there for 2 minutes’.

 

Amy [00:20:37] Do you find, Katy, when you’re out in situations like that having someone else, almost like another migraine ally, do you find it easier to ask for that accommodation to suggest moving table or do you feel confident and comfortable enough now that you would have done that without her?

 

Dr. Katy Munro [00:20:53] Well, she initiated it and I felt that she was really happy when I joined in and said, ‘Yes, that’s me too’, because she was apologising, you know. And I think we sometimes don’t want to be a bother. ‘I’m really sorry’. You know, trying to try and make people not feel that you’re being fussy or whatever. So yeah, I think that’s right, having somebody with you who understands because they also get it is really helpful. Have you all tried lots of different sort of light-blocking glasses. I can see, Amy, you’re wearing your Avulux glasses.

 

Amy [00:21:27] Yeah, I tried. I’ve tried loads of different ones, actually. I’ve tried the classic really red FL-41s. I’ve tried ones that look more like clear that are blue light glasses. I’ve lived in sunglasses for months. I’ve done it all. And I really was so sceptical about Avulux. I felt like all I’ve done the last week is bang on about Avulux. But they really have- like the fact that I’m sat looking at a laptop and I’ve got a bright phone, you know, it’s just, yeah, it’s completely changed the game for me, for what I’ve been able to do. And yeah, I just want everyone to try them because I think they look so like all the other glasses out there but for me anyway they work so much better and they also don’t make everything look pink or green or they don’t seem to change the colour too much, which is quite a nice bonus. I mean, most of us with migraine would probably put up with things looking a bit pink or green or things but it means if you’re watching a film or looking at you guys on Zoom, you all look like the colour you’re meant to be, which is quite nice.

 

Lily [00:22:30] Oh, that’s interesting. Yeah, I love my Avulux glasses. They’ve been a complete game changer for me, when I have a migraine and also kind of like helping prevent one because light is such a huge trigger for me. I think I was always living in sunglasses. I had these massive ones that make me look like Willy Wonka, which I was living in beforehand. And I don’t think it was until I came to the National Migraine Centre, which meant that I’d been seeing a neurologist for about six years, often wearing my sunglasses and no one had ever told me about dark adjustment before. And so, I know lots of friends who kind of wear prescription sunglasses for migraines and their opticians are like, ‘Oh, yeah, it’s fine. Just wear prescription sunglasses. You don’t need to, you know, buy the other ones’. And it’s like in the long term though, you’re just making the problem worse through that. So I love my Avulux glasses, but I wear them often with a cap, especially at the moment with that low sun, it does come in through the side. So I wear them with one of those caps with the rounded peaks really far down. So it kind of covers all the bases.

 

Jess [00:23:40] With the glasses, do you not find that- because I had- I guess because I wear glasses, I had to get like prescription stuff. But I found like with standard sunlight- same kind of lenses as these, I still get so much light coming in from the side. So, I wear wrap around sunglasses. So like, everything is sunglasses, do you know what I mean? Whereas with those, like, do you not find it painful on the sides or underneath or anything?

 

Amy [00:24:03] I guess if there was like a lamp here to the side of me, I would find that bothersome, like I’d still move things around and outside when it’s bright, I’m still a bit of a cling to my sunglasses, although I know lots of people, I must be brave and try them. I’m a bit with Katy at the moment with this low sun I’m like clinging to my sunglasses. But no, most of the time I find them fine actually. There’s quite a lot of different- they’ve just brought out some different styles of frames that are slightly more capped at the sides, actually, because a friend of mine made the same point about them not fitting her face correctly.

 

Dr. Katy Munro [00:24:41] What about things that you can do on screens and phones? Are there any tricks that you wanted to share about those, any of you?

 

Amy [00:24:48] So I have my phone permanently on, is it called Night Mode? Not night mode. Not the dark one. The one where it makes everything slightly orange. Night shift mode. So my phone is permanently on that. I also have and I’ve actually shared a video of this on my page where you can set like a quick, I don’t know what you call it, just press the side button twice quickly and it makes the whole phone go into like a red filter, which I find I don’t need in the day anymore, especially if I’ve got Avulux on, but if at night if you ever need to look at your phone, for example. Not that I tend to, but if you need to look at your phone in the middle of the night and it’s dark, it makes everything red and it’s not like, ‘Oh, this is so bright’, but night shift mode on most things and turn down very low. Like I can see fine, thank you, this is perfect. I do find sometimes when friends or family members want to show me something on their phone, though, especially I actually have to say, my poor dad, I noticed the other day, I was like, ‘This is like a torch. How is this not hurting your head?’ Yeah, but no, I mean, we’re so lucky now that we have all these tools and, you know, laptops can be turned down. And even actually, the TV is a big one. I learnt far too late that you can turn down the brightness, you can turn down the backlight, you can do lots of clever things, but it is hard when you’re not in your own home for sure, to have these accommodations.

 

Abi [00:26:19] I struggle with it at home as well because of my work, because I make a lot of quite brightly coloured artwork. And if I have weird colour filters and things on the screen, then I can’t pick the colours correctly. I also found that if I am really light sensitive and I make myself work anyway, I’ll come back the next day and realise I’ve chosen much duller colours than normal.

 

Dr. Katy Munro [00:26:42] Well that’s interesting, Abi, yeah, of course it’s a real problem for you with choosing designs and making art, isn’t it? You mentioned ice packs, so that really interests me because I have some patients who say, ‘when I get a migraine, I put ice packs on my head’ and I’m the same. I use an ice pack if I’ve got- I’ve get a very hot head sometimes when I’ve got an attack and then I have other people who say, ‘Oh, I have to put a heat pad on my neck and shoulders’. And I’m thinking, ‘How could you bear that?’ But it’s a very individual thing, isn’t it? Have you found this? Have you tried ice or heat, Jessica?

 

Jess [00:27:26] I mean, I used to- I didn’t even realise til- so I first had Botox when I was in I think year 12. And I didn’t realise until then that I just basically had, sort of, a mild to moderate migraine the entire time. So when I found Botox, I was like, Oh my God, I’ve been like insanely hungover my whole life. That’s what it felt like. And then when I was reflecting on stuff, I was like, Oh my God, actually all throughout year nine, ten, eleven, like maybe seven/eight times a day, probably more, I used tiger balm on my temples all the time to the extent that I had like permanent red marks here. And I just thought like, oh, that was just normal. I remember people commenting  being like, ‘that’s so weird. Like what are these marks?’ And I was like, ‘Oh, you know, I just love tiger balm’. Not thinking, because I never realised, Oh, it’s not normal for it to hurt every time I walk up the stairs or to be in so much pain every time I move my eyes. So I was like that for years and I just didn’t realise. So even now, like I will use like Tiger Balm. I bought like this 4head thing the other day, which I think is a massive gimmick. I don’t know if it’s got any proof or anything, but I think sometimes just doing stuff makes you feel a bit better. Like if I’m out and I’m like, ‘Right, well I’ve done all I can do, I’ve put on 4head, done tiger balm, put on some essential oils, I’ve got my sunglasses on,’ you know, I can go, right? Well, I’ve done what I can do, do you know what I mean? So I don’t know if they actually work, but I have used them extensively.

 

Dr. Katy Munro [00:28:51] I have one of those things called Migra-Cap, you put it in the freezer and you put it on, but it covers your eyes, so you can’t wear it round Tesco or other supermarkets, but it gives you about 45 minutes and sometimes that’s just really soothing I’ve found.

 

Abi [00:29:04] I’ve got one called Ice Kap. Kap with a K. You can turn it round to cover your eyes if you want to but it leaves your eyes free but covers like the back of your head and the top of your head with multiple ice packs and that’s been my saviour on many occasions. I can actually- I used to be able to use heat as an indicator that I was getting an attack. I would look in the mirror and see that one of my ears was bright red, and I was like, ‘Ah, I’m getting a migraine’ because my head is just getting hotter and hotter.

 

Dr. Katy Munro [00:29:35] There is a thing called red ear syndrome and it is linked with migraine interestingly. Somebody was asking me about it the other day because her son was getting it. And my son used to get- my son doesn’t get migraine, but he used to get red ear syndrome, which is a very peculiar thing. But yeah, nothing to worry about if you do get a red ear anybody who’s listening. What about the forehead sticks and the menthol things? Again, that’s something that you think, you know, with the smell sensitivity, that might be something that would be quite triggering and yet, other people have told me, yeah, those little sticky gel pads they put on their heads. What do you think about those? Anybody used them?

 

Amy [00:30:12] I used to- I’ve tried the Kool N Soothe ones on the head and I’ve tried the sticks and for years I was like, ‘oh, I’m not really that bothered by these’, you know, it’s a nice, cool, tingling sensation for a few minutes. But I found in the last year or so actually the 4head one on my- I get a lot of occipital pain here and it’s probably the only thing I can use that ever seems to touch or give me any kind of relief. And like, it’s short lived, it’s not really fixing the problem, but sometimes you really need it. Other than probably a big ice pack. I love it for if I’m out and about and actually don’t have access to a freezer with an ice pack or I just, you know, sometimes you don’t want to be seen with a huge ice pack on like in Tesco. And actually, I don’t know if it’s more of a distraction thing or what it is, I find for that nerve pain, it actually yeah, I find it really helpful.

 

Dr. Katy Munro [00:31:09] I have had some patients who find the 4head stick really, really helpful actually. I think it maybe something genetic about- I dunno or just the individual variety of migraine in different people. But yeah, I think there is certainly a number of people. It’s what my mantra is really. Nothing works for everybody and you just have to keep trying. If only we just had something that works for everybody, we could just say, ‘Oh have this, it will be fine’. But it’s sounding from what you’re all saying as if it is quite hard work, just coping on a day to day basis with all of this and exhausting. Is the fatigue something that you’re finding is troublesome? Is it wearing you out? Is it making you poor sleep? Any tips about sleep?

 

Jess [00:32:01] So I didn’t realise but I actually got told like the other week I’ve got medication overuse headache, so I now basically can’t use any medication. So one of the things that I’ve had to do at the moment to kind of just like not be dying from pain is to be like, ‘right, I’m just going to go to sleep’, but obviously that really messes up my sleep later on in the day if I’m like sleeping like 1 p.m until 5 p.m. and then I need go to sleep and then that doesn’t help with my head at all. It’s just at the moment it’s like one of the only short term- that and Cefaly is the only thing I can do at the moment, you know? So I don’t know. I find it very hard managing sleep when I’m in so much pain.

 

Amy [00:32:44] And as awful as it sounds, when you’re asleep, you’re not aware of being in pain. So it’s like the ultimate escape, isn’t it?

 

Jess [00:32:56] Yeah, exactly. Though I do have, like, the worst dreams when I have a migraine, you know. I’ll wake up in a panic and so it’s not nice sleep. But at least I’m not aware, like, ‘Oh my god, there is an actual drill in my head. Like, I can’t move’, at least you’re not aware of that.

 

Lily [00:33:13] But what is really helpful, I have found that not only in keeping the routine because migraine brain’s like routine but also in, like, my body knowing that it’s sleep time. So even if I can’t sleep, I’ll try and stay in bed and listen to a podcast or something. But I have quite strict boundaries. So even like recently I haven’t been terribly well, so I’ve had to spend a lot of time in bed or on the sofa or something, but I will change out of my pyjamas into like daytime pyjamas and, you know, move from the bed to the sofa and, you know, eat something and then I will have a nap most days at about 2 p.m and I guess maybe because I have it early enough.

 

Abi [00:33:56]  I find that if I get up and try to work in the mornings then in the afternoons I will be completely wiped out and I will have to take a nap. And if you keep taking naps like that, it does mess up your sleep pattern, which in turn can make the migraines worse. It’s kind of a cycle. It feeds into itself.

 

Dr. Katy Munro [00:34:18] I have a tip about naps which I gleaned from my guest. I recorded an episode for next series and she is a lovely lady called Sabina Brennan and she was giving me a tip about naps, which is if you want to have a nap, have it before 3:00 and either have it for 10 minutes or for 90 minutes because your sleep is in 90 minute cycles. So if you go to sleep and you wake up in the middle of that 90 minute cycle, you will feel really groggy. But if you just go for like a little cat nap for 10 minutes, that actually has been found to be really beneficial. And we were probably designed to have little naps, but it’s the timing and not reducing your sleep pressure too much so it doesn’t muck up the getting off to sleep later. Sleep is so so important and so I’m always banging on about you know, have caffeine in the morning and don’t have too much of it. Anybody got any other sleep tips?

 

Amy [00:35:18] I find best just being really consistent. It’s one of the hardest things to do, especially actually I found since being better because I’m doing more in the day, it’s almost easier if your days look more similar, I guess. And if you’re already spending a lot of time in bed can be very tricky to then get into good sleep. But if I try and wind down at the same sort of time and try and again, like at the weekends and things and different times- Christmas is going to be a classic example of this when we all do things at different times, but trying- I feel like I bang on about this as well, but trying to do things at the same time I know my brain likes it. If I have a long nap and then go to bed late and then sleep in my head does not like it. But it is really- I was going to say before, acutely in that moment, that used to be the thing that would end in attack for me. I’d take a sumatriptan, it would kind of knock me out. I’d sleep for 2 hours and I’d wake up, attack free. Ugh, man, I miss those days. But I knew that wasn’t really a good- it’s not a good long term thing but in that moment. It does seem to help for a lot of people still, doesn’t it, that they take their meds or they do whatever they need to do, they sleep and they wake up better. But as a long term preventative lifestyle, I think trying to be consistent, waking up and going to sleep at the same time is really helpful. Even thought it might feel really boring to do.

 

Lily [00:36:50] Exactly. I always have it at the same- My dog loves it. We have a nap together and yeah, so I kind of have that routine and then quite strict, I guess do they call it like, sleep hygiene. Where you kind of have a really strict routine to like wind your body down and tell it that it’s bedtime and it has been practising that rather than just kind of like flopping into bed because I’m feeling awful or something. Like just trying to keep myself going that little bit longer so I can do some meditation or some stretching or whatever it might be that’s helping my body wind down in order to go to sleep. It means that I’m staring at the ceiling for slightly less time.

 

Amy [00:37:29] I think that distinction is so important. I used to find when I was at my most poorly and was spending months and months and months in bed, I found that really hard because I’m like, ‘Oh, is it time to get into my new clean pyjamas?’.

 

Lily [00:37:42] It’s really hard. It is.

 

Amy [00:37:43] You know, like it’s awful. You’re in bed all day. You’re not even sometimes well enough to get up to go and be on the sofa. And I think that’s really- it sounds so easy, doesn’t it? It’s like, ‘oh, have a nice wind down routine’. If you’re in bed and you’re spending weeks, months, whatever, stuck with a migraine attack, I feel like that must sound really irritating to hear because it’s so hard to have that. Yeah, and I guess with the light and dark as well, that’s really hard because I used to spend so long with my blinds down and in a dark room. And again, what that does for your circadian rhythm and everything, it’s really hard.

 

Dr. Katy Munro [00:38:22] Getting out into daylight in the morning is really helpful for your circadian rhythm as long as you’re not too light sensitive and the glare of the sun isn’t sending you back to bed. I had a guest on the podcast a while ago now who was in a state of chronic migraine for a long time and she decided to try cold water swimming. So I don’t know if you’ve seen the film 100 Days of Vitamin Sea, her name is Beth. And she and her husband diligently went and in the very coldest sea up in North Wales and went swimming every day. Have any of you ever tried cold water swimming?

 

Amy [00:39:03] I have a little bit. I’m by the beach in Cornwall. I love it for my neck. It just feels incredible when I’m in. But it’s still quite- it’s a lot physically to get in and get out and showered. And it’s just- it’s quite a lot.

 

Lily [00:39:18] It is a lot. I sometimes go swimming in the Serpentine in London, which is very different and probably a lot grimier than the sea in Cornwall. I’m very jealous. But it’s great and it’s the only time I’m not in pain. Or like my in-laws live down by the sea and again, it’s the only time I haven’t been in pain for the last three years now. But it is exhausting to the extent that sometimes I come home from the Serpentine, kind of all wrapped up in my thousands of layers and I’ve just fallen asleep on the sofa, still in my coat. I’ll just sit down and be like, I’ll just have a little sit down and then I’ll make myself some tea or whatever. And I wake up 2 hours later because I’m just so exhausted from it. So it’s kind of a bit of a trade off sometimes.

 

Dr. Katy Munro [00:39:58] Have you tried cold water showering, Lily?

 

Lily [00:40:02] My thermostat on my shower is currently stuck at one temperature. I sometimes have cool baths. But yeah, I used to use the cold showers, but I can’t at the moment cause it’s broken.

 

Dr. Katy Munro [00:40:17] Did you say you do, Abi?

 

Abi [00:40:19] Yeah, I kind of switch between cold and hot showers, depending on what the most prominent symptom is. But I’ll do a cold shower to help with the headache and then a hot shower to help with all the muscle tension. I get really bad muscle tension in my neck and shoulders from my migraine. Sometimes I sit there with the ice pack on my head and the heated blanket on my shoulders.

 

Dr. Katy Munro [00:40:39] Yes. There’s quite a trend, I think, for people to try cold water swimming but of course, you need to do it very safely and carefully and not for too long either, because if you stay in for too long, then you get chilled and then you get a stress response, which isn’t helpful. So you don’t have to do it for more than 5 minutes. I quite like a dip in the Cornish sea when I’m down there as well, Amy. And Jess, you mentioned the Cefaly Neuromodulation device, and there are a couple of others. There’s the sTMS mini which is a magnetic one and there’s a couple coming, the Nerivio, which you stick on your arm, and then there’s another thing called the Relivion, which is going to go round your whole head which is coming out in the spring. How do you find the Cefaly? You like it? I never know whether to call it Sef-aly or Kef-aly.

 

Jess [00:41:31] Yeah. I never know how to pronounce it. I mean, I didn’t realise I had never actually been taught how you’re actually meant to use it, so what I used to do is I put it on, put it up to the full setting and just be there like, ‘oh my god. This is so intense’. And then my new neurologist was like, ‘No, what you need to do, you need to build it up till before it’s painful. If it’s painful, it’s just going to give you a headache.’

 

Amy [00:41:55] Everyone does this. Everyone just whacks it on and does it on full and they’re like, ‘it’s really painful’, and yeah, because you’re not using it right.

 

Jess [00:42:04] But there was like no instructions, like it says in the instruction manual, like just build up the pain. Like it doesn’t say anywhere. So now it’s been like this last month or something, maybe like three weeks that I’ve actually been using it properly and it’s been really good. So yeah, I think, I dunno- it’s quite expensive, but I think it’s definitely worth it and my neurologist, he has migraines and he was like, ‘I use it every day religiously, the 20 minute preventative’. And he said it makes such a massive difference so…

 

Dr. Katy Munro [00:42:34] I have got an increasing number of patients who are trying it. And I say to them, don’t go in hard and fast. I’ve learnt from patients coming back and saying, ‘Oh I can’t stand it’

 

Jess [00:42:46] That’s what I did.

 

Dr. Katy Munro [00:42:47] You know, go gently. With everything with migraine I think that’s a good mantra is go gently. Start low. On low dose medication, go in with changes slowly and gently. Your brain doesn’t like change. But I’ve got, you know, from teenagers right through to people in their sixties and seventies who like it. And I’ve, you know, had a colleague who’s just such a big fan. So, yeah, it’s nice to have something that’s not medication as well, isn’t it?

 

Amy [00:43:13] Yeah. I was going to say it’s good if you’re struggling with medication overuse or.

 

Jess [00:43:16] Yeah, definitely.

 

Amy [00:43:17] I just think to anyone, if your painkiller days or triptan days are slowly creeping up, the Cefaly or one of the other Neuromodulation devices is such a great thing if you’re able to try it.

 

Lily [00:43:27] And I love the fact that you can use it preventatively and in an acute setting. I don’t use it preventatively very often, but I do love it when I’m having an attack because it does- I don’t know if you guys find this, but it just makes my forehead go numb. Like where it’s dealing with the, you know, the sensation from the device. And on the price point, it is expensive. There is one on Amazon. And if you type Cefaly into Amazon, it comes up. I can’t remember what it’s called. It’s called something like a head term and it’s a disposable one that’s about 20 quid and it lasts…

 

Amy [00:44:05] I have to say I’ve done quite a lot of research into this because I’ve done some work- full disclosure, I’ve done some work with Cefaly and the technology isn’t the same.

 

Lily [00:44:14]  Is it not? Because I tried it. It’s not as powerful. I noticed a serious difference between the two, but I found it helpful to give me confidence in putting the money into a Cefaly, knowing that I’d seen a bit of response with that.

 

Amy [00:44:27] Yeah, I think it still stimulates your trigeminal nerve. I can’t remember what- it’s something to do with the electrode because people often muck around with the electrodes, you know, try and improve the stickiness or move it around or put different things on. And it’s very kind of finely tuned how that is with the magnetic on the electrode and I think it’s to do with that. The cheaper one on Amazon does not replicate that in the same way.

 

Lily [00:44:54] Yeah, there definitely was a serious difference but for me, it gave me the confidence to kind of put the money into the Cefaly. Exactly.

 

Amy [00:45:03] It’s a nice thing probably to try. If you can test the sensation. Although Cefaly do- you can try it I think for 30 days or 60 days to see if you like the sensation. Because it is a lot, the sensation, to get used to.

 

Dr. Katy Munro [00:45:20] It takes a least a fortnight I would say with most people I’ve spoken to. They’ve said, ‘well I didn’t really like it for the first couple of weeks but I carried on gently doing it and now I’ve got used to it.’ Yeah. So what I would like to talk about now is Christmas and the festive holidays of every different type that there are coming up. Any tips for people with migraine in surviving and getting through with minimum impact.

 

Amy [00:45:53] Ask beforehand. That would be my piece of advice. Because so often we go to family or friends and then we might be still a bit uncomfortable when we’re there to ask for things. I always think if you’ve got really clear things that can help you be there and be there longer and enjoy yourself as best you can in pain is ask for accommodations before you’re there because it’s easier- well, I find it easier anyway to ask beforehand. And also it then allows wherever you’re going to kind of maybe prepare a room for you or just know that flashing tree lights might not be ideal for you or loud music on and things like that. I always think if you can ask before to ask before you go somewhere.

 

Dr. Katy Munro [00:46:34] So a little area of sanctuary wherever you are, kind of find it out as you go in the door and say, ‘Right, where’s my quiet space?’

 

Abi [00:46:43] The absolute key thing for me is always having a designated quiet place that you can go to for recovery time, because if you’ve got a room full of family, noisy, everyone’s having fun. It’s great, but it’s a really triggering environment and you need somewhere to retreat to. I think, unfortunately, sometimes with family like you might have to spend time with someone who doesn’t really understand. I think the important thing there is to make sure that you have boundaries in place. So if you know you’re going to visit a family member who doesn’t understand or tolerate your needs to make sure that you limit the amount of time that you’re spending there and that you do really put your foot down about the things that you know are going to set you off.

 

Jess [00:47:32] I find it quite a lot when I, for example, like if I’m meeting with a group of friends and they’re like, oh- I don’t drink because of migraines so they’re like, ‘oh, let’s meet out drinking and just chill at mine at like six’. And I have to say, ‘okay, but what am I going to do about food?’ You know, And I have to- just making people aware about- because if I miss a meal, if I eat like slightly later, like it just triggers a migraine straight away. So I think making people aware. This is the food I can eat, like I do have to eat and I used to find it really uncomfortable saying to people, ‘look, I need to eat’ and stuff like this. But now, all my friends are so like, ‘right, don’t worry, we’re going to do this at six, but, we’re going to have dinner ready for you seven and, we’ve got you some…’, you know, but I think not being uncomfortable about that and like, making it really aware. So even like my family. They’re like, ‘Oh, we’ll just do this and, let’s have lunch at three’. And like, me and my mum- because my mum also gets migraines, we’re both like, no.

 

Amy [00:48:23] And I think one of the things as well is we all assume that because everyone has heard of migraine, that people understand what chronic migraine is or how migraine impacts us. And I’ve found a big thing that’s helped me with even close friends and family is if I’d had a really bad week of migraine instead of just saying, ‘well, you know, I’ve been in bed all week I’ve had a migraine attack’, is explaining how it’s impacted my life and how that week it meant I wasn’t able to do X, Y and Z and even to strangers actually. If I tell strangers, ‘oh, I’ve got chronic migraine’, most people look at me like ‘oh dear, that means a lot of migraines’ and they don’t understand what that means or how that might impact my life. And I find, yeah, explaining that to people really helps with asking for accommodations as well and them not looking at me strangely for turning down the radio or turning off the lights.

 

Lily [00:49:18] Yeah, and I think similar to that, like for me, the kind of holiday season really throws into very sharp relief how different my life is from kind of all of my peers who don’t have chronic migraine. And so I find that actually it’s a time where I really need to prioritise my mental health as well as my physical health and looking after my condition, because actually I don’t want to answer 100 questions about what my doctors are doing. And actually I’m not like smashing it with my career like I thought I would be by now- or my career looks very different to how I thought it would be. And so like kind of when you’re, you know, meeting up with old friends in the pub or same with family members and siblings telling them about what you’re doing. And it’s like, ‘Cool. I spent this week in bed. Great’. So I kind of find that I need to have that place to retreat, not only to look after my physical health and stop me from getting an attack, but also to like, do some internal work to make sure that I’m not also getting really emotionally stressed as well.

 

Jess [00:50:25] Yeah, I think it is quite interesting actually. I found since being so ill, a lot of people that I think were like my really good friends just aren’t and they’re like, ‘oh you’re ill? Have they found the cause?’ Or like, ‘Oh, are you better yet?’ And it’s like you haven’t taken the time to, like, actually find out anything about migraine. So a lot of my friends that are really caring and as I’ve been gradually getting iller and iller, have actually been like, ‘Oh, tell me about this and stuff’. If I say I need to eat, they are sort of like, ‘Yeah, of course that’s fine’. And like, they really understand that. And I think it’s such a distinction between people. So even though now I feel like I’ve so many less friends than I had like a year ago, but all the friends I have are like proper genuine friends that actually care. So I think if I say to people, I dunno, like maybe if I’m with a big group and like some of the people I am less close to or whatever, they’ll often be like, ‘oh, why do you want me to turn down the lights and oh that’s so annoying’ and then you’ve got to try to explain. But I think, you know, when people do actually care like family and stuff there are actually very considerate.

 

Amy [00:51:23] I think do what you can and know that- well this is what I want to say to all you, ladies but also to anyone listening, know what you’re doing is enough. Like, migraine is so hard as it is, never mind over the holidays. We put so much pressure on ourselves. I just think you’re all doing great. You really are, though. You’re smashing it.

 

Dr. Katy Munro [00:51:44] Keep going. Keep going in small steps as well, I think. Isn’t it really? Do you find that people are sometimes giving you tips? You know that when you say, ‘oh, I’ve got chronic migraine’, they say, ‘oh, maybe drink more water?’

 

Abi [00:52:03] I once got that from someone, I’d only met them that day. I was drinking a glass of water and they asked me if I’d tried drinking more water.

 

Dr. Katy Munro [00:52:11] It is a common one, isn’t it?

 

Lily [00:52:12] It’s the worst!

 

Dr. Katy Munro [00:52:12] And the other one I used to get is, ‘Oh it’s probably because you’ve got a stressful job’. It’s much, much more complicated.

 

Abi [00:52:22] But I found something recently that doesn’t stop people from making these suggestions but it makes it a little bit easier for me to understand why they’re doing it. But I was talking to my sister, who’s also chronically ill, and she was saying that perhaps people making these suggestions is less about you and what they think about you and more about the fact that they can’t accept that somebody could get ill and not get better and they don’t want to accept that this could happen to them at any time. So it’s more about reassuring themselves that, ‘oh, you’re just not doing the right things to make it better’. It’s more about them than it is about you.

 

Lily [00:52:59] Yeah, totally. I think that, you know, and also when we have turns of phrase in language, it reflects that. Like when we say, ‘oh, you know, everything happens for a reason’ or ‘ you’ll never be given more than you can handle’ or, you know, horrible phrases.

 

Abi [00:53:13] You’re like, ‘try me’. Yeah.

 

Lily [00:53:15]  And it’s kind of like, I think it just really reflects on the other person’s struggle with being uncomfortable because they’re being confronted with something that they don’t really understand and is really horrible and is really uncomfortable. So that’s kind of this like false positivity that’s just thrown in. It’s like, ‘Oh yeah, no sure, I’ve been lying in bed for three years because I haven’t drunk enough water, thanks for that’

 

Amy [00:53:36] I don’t know if you do this too, but I find if ever I’ve told anyone, like a stranger or someone, what’s wrong with me, I end up trying to make them feel better. They’ll be like, ‘oh, that’s awful’ and I’ll be like, ‘don’t worry things are looking up’.

 

Lily [00:53:51] Totally, yes.

 

Amy [00:53:52] Then i’m like, why am I doing this to you to make you comfortable in the situation? It’s very bizarre. I do think though, and this has taken me a long time to get to this point because- and I still do find things people say infuriating, but I do try to remind myself that- I do think this is true, most people genuinely mean really well. Most people are terrible at articulating kind words. Or asking about your health for sure. But I do think most people do it from a good place and aren’t really- they want to try and offer something, even though it’s just really unhelpful and not what you need to hear but I try and keep that in the back of my mind as well. See this glass of water?

 

Jess [00:54:43] I hate- Sorry I was just gonna say, I hate how when you meet people and they just assume, like, they know so much more about your migraine than you, and I’m like, ‘No, I am a person that lives with this. I know more-‘ if I tell you I need this accommodation, like, please just don’t question me on it. Like, I’m not just saying it for fun. Like, I’m not just a little bit stressed, Like, it’s so frustrating and it’s when people are like, ‘This is what I think’. And like, I don’t know, like ‘if you eat an apple, then you’ll be fine’. It’s like, Oh my God. You just don’t get it. It’s so frustrating.

 

Dr. Katy Munro [00:55:13] Rather than punch them on the nose, is there some way going forward? I mean, I’m, as you know, very passionate about raising awareness of migraine. That’s why we started doing the podcast in the first place. Are there any other ways that you would like us to be going forward or you yourselves go forward? I know, Amy, you do the Migraine Life Instagram, and that’s got a big community. I think having a community, knowing other people who have migraine is really helpful. But how do we get the message out there to people who don’t have migraine to really make them understand? Any thoughts?

 

Amy [00:55:49] I think slightly touching on what I said earlier about if someone- a few years into making my page realised I’m talking so openly about migraine on the internet and talking to people with migraine, about migraine, all the time that in my ‘real life’ when I meet people, I’m shutting conversations down. I’m saying I’ve got chronic migraine and leaving it at that. And trying to stop that and explain what that means and how migraine impacts me and why. There are so many other people- I always think people who weren’t, kind of I guess like me, who weren’t able to talk openly, they’re not- they’re hidden, if you like, from the outside world and speak up for them. That’s really how we’re going to change things, because most people still hear migraine and think of that one attack someone gets that knocks them out for a few hours, rather than this can be a chronic and debilitating and completely life-altering disease.

 

Abi [00:56:54] I think, there’s not one big action we can take that will make everyone who doesn’t have migraine understand. I think it’s like Amy said, it’s about the one to ones. It’s about the little conversations that you have with people. And, you know, I’ve started to try and do a bit of that through my own work and I follow Amy’s page as well. Yeah, just every little conversation you have that will dispel some of the illusions people have about what migraine is and what it means.

 

Dr. Katy Munro [00:57:23] Just not being frightened about talking about it, isn’t it? I had a patient a while ago and she said, she started one of the new anti-CGRP drugs, and it really worked for her, thankfully. And she said, you know, ‘for 30 years I’ve been keeping this a secret. My friends didn’t know. I didn’t tell people how unwell I was. But now I’m telling them how unwell I was and they go, Oh, that’s why you were like that’.

 

Amy [00:57:50] That’s such a huge burden for people to carry. And it is because it’s so stigmatised but even like you moving in the cafe to a different seat and the waiter’s like, ‘why are you moving around’. Telling that person why, I just think it helps people think, ‘oh, they must be really light sensitive they’re making such a fuss in the cafe’- you’re not making a fuss, but you know what I mean. Those little things and kind of owning it, even if you feel embarrassed or silly. It’s not silly. We know it’s not silly. We know it’s real and debilitating. But I think if we hide it and play it down, that doesn’t help anything in the long run, does it?

 

Abi [00:58:28]  I used to be really apologetic about having to make adjustments and things would be like, ‘Oh, I’m sorry, I can’t go to cinema today’, that kind of thing. But yeah, it’s like, if we don’t bring it up, then people won’t learn and people won’t understand. And not everybody is as comfortable as like me and Amy and Lily and Jess are about talking about our experiences, you know, in public like this. So I think is important for those of us who are comfortable with it to keep doing what we’re doing because we’re standing up for the people that aren’t comfortable doing that.

 

Dr. Katy Munro [00:59:00] Probably a very good place to end. Thank you all very much for all of the contributions today. It’s been absolutely brilliant. A festive wish? Any of you got anything top of your Christmas list not connected with migraine, you want to share with us or any thoughts for 2022? I’ll tell you what mine is, let’s get rid of this flippin’ virus.

 

Lily [00:59:24] Yeah! If we all wish for it, will it make it happen?

 

Dr. Katy Munro [00:59:33] Hopefully.

 

Amy [00:59:33] If we cross our fingers.

 

Dr. Katy Munro [00:59:36] The magic of video consultations, if we all hold hands remotely then I’m pretty sure we’re on for a good Christmas and a virus-free New Year, but we shall have to see. That’s absolutely wonderful. Thank you so much and have a lovely festive period and hopefully feeling much better as we go forwards and onwards into 2022.

 

[01:00:02] You’ve been listening to the Heads Up podcast. If you want more information or have any comments, email us on info@NationalMigraineCentre.org.uk. Till next time.