S5 E5: Migraine voices

Migraine voices

Series 5, episode 5

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.

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Transcript

00:00:00 It’s Migraine Awareness Week and we’re marking the occasion with a Heads Up special, sharing some of your inspirational migraine experiences. We’ll be hearing from three remarkable women who each have a powerful story to tell about their migraine journey. And while every journey is unique, we’re sure you’ll recognise many of the challenges they’ve faced. We hope you’ll also take away some inspiration and ideas from the strategies they employed to take back control of their lives. Let’s get started and dive into the stories of these incredible women.
00:00:48 Asaria Cooper
Hiya I’m Asaria Cooper. I’m a 30 year old scientist living in Malvern and I live with chronic migraine. I grew up in Rhondda Valley. I went to university in Southampton and now I’m very much enjoying living in a much quieter place in Malvern as audio sensitivity is a big part of my migraine journey.
And that kind of all started around the age of nine. I started experiencing symptoms such as frequent head pain, dizziness, nausea, scintillating scotoma, which is kind of like a crystally effect across your vision, and things like that. So I didn’t really understand what was going on at that time. None of us really had much information on migraine. We didn’t quite understand that was even where the diagnosis could lead. So we kind of went back and forth to the doctors for a while and eventually when I was around fourteen, I was diagnosed with chronic migraine. And so that then was fifteen days or more a month where I had a migraine. And those came in all shapes and sizes, really. But the vast majority would mean that I would have to lie down in a dark room, make sure that I couldn’t hear much and having lots and lots of various heat distribution things to help me through, so things like the Kool ‘n Soothe head strips and stuff like that were really my sort of saviours in my teenage years and kind of still are, to be honest.
But getting that diagnosis was massively important to me because it helped me understand that what I was going through: a) had a name, and b) wasn’t unique to me, which sounds silly, but I didn’t know anybody else living with migraine at that point. And for the most part during my teenage years, it would mean that I’d find it more difficult to go out and be in groups of people. I was very, very dedicated to school, so you know, it was very difficult when I had to take sick days and things like that. But it wasn’t so bad. It was manageable. I’ve tried a bunch of different medications for it and some were better, some were worse, but generally it was under control.
But as I started getting older, my migraines have evolved. So both the symptoms and the severity and the frequency. And actually, for the last eight years, they’ve been daily. So I’ve been living in a place where I’ve had migraines every single day. And that’s really affected every single facet of my life.
I started out getting these right at the start of my PhD — great timing, I’m sure. And I started getting hemiplegic migraines as well as part of that, and that is a migraine that presents like a stroke. Which meant I was hospitalised with that quite often, particularly whenever I travel anywhere, because the strain of travel on my migraines with the light, the sound, the busyness — mostly travelling for conferences and things like that. So the mental intensity of it all really, really overloaded me with my migraines and I ended up in quite a lot of hospitals all around the UK. It was very, very difficult time for me. I joined as a patient to the National Migraine Centre, I think that was in 2016 and they really, really helped. They helped me understand what potential treatments there could be. And through them, I’ve been able to access a few different options, kind of through the NHS as well, such as Botox and a big capacitor thing called a gammaCore neuromodulator and stuff like that. So I’ve been able to try a huge variety of fun and unusual treatments. Unfortunately, none of it has helped that much, which you know.
When I first got daily migraine my depression was so bad that I kind of decided that I wouldn’t be able to live past 1000 days in a row. And obviously that is incredibly difficult to cope with. My symptoms and my severity of symptoms, my mobility, my ability to interact with people. It was all taken away from me. And I struggled with that for so long. And things haven’t really changed much in terms of the frequency and the severity of my migraines over the last eight years. Obviously I have them every day to a varying degree. I am getting fewer hemiplegic migraines, which is nice. But it means that I’m missing huge things — I’ve had to miss friends’ weddings. Literally today I’m missing a musical that I was supposed to be going to see with my mother for her fiftieth birthday. I have had to be in a situation where I’m taking an extraordinary amount of sick leave. At the moment I think I’m practically working less than half-time. I’ve been extremely lucky that my work has supported me wholeheartedly through that and I don’t have any complaints or anything in that department, that’s really helped, but I’m quite dedicated to my science and it is difficult emotionally to have to step back from things, to not be able to output what you want.
But generally I’m now in a lot better place with myself. And I credit that to two things. First thing I think is even though I was diagnosed with chronic migraine, I didn’t really know that that was a disability as such, which sounds silly because it has impacted me for years and it does affect my day-to-day ability to carry out everyday tasks and that is essentially the definition of a disability. But it wasn’t really until it became very obvious that, you know, I was losing mobility, and I was very dizzy and it was so constant that I really considered the possibility of saying I’m disabled.
And I found that actually really powerful to be able to say yes, this is a disability and I need additional help. And that’s allowed me to both take ownership of what I need and start seeking out disability aids, things like that. I’ve been using a walking cane for about five years now, pretty much full time. The dizziness is extreme and the limb mobility is pretty weak, so having that helps me at least be partially independent. But I’ve also since been able to get a blue badge because I can’t drive because of my visual aura. I have blindness in some part of my vision pretty much constantly. Driving is not really an option for me, even though I’ve got a licence. But I’ve been able to get a blue badge so my partner and I can still go out to restaurants or things like that, when I’m able to. And I’ve also been granted personal independence payments. Thankfully. And I think a lot adds to my understanding of myself as a disabled person and my understanding of just how much more awareness is needed around chronic migraine.
There’s a lot of people in my life that didn’t really take my migraine seriously at the start until they saw it in person, saw the effect it was having on me, in a number of cases with friends literally having to physically carry me out of a room, into an ambulance and stuff like that, so I think being able to share my experience and reassure other migraine sufferers and migraineurs — you’re not alone. And even if, as in my case, it hasn’t gotten better per se in terms of the physical symptoms, there are things that you can do to learn to live with it. The pain doesn’t subside, but you learn to grow around the pain. I say this having had just over two years of acceptance-based cognitive behavioural therapy, which has been extraordinary. That’s been so helpful because it has helped me adjust my expectations for myself. And not to judge myself. Or put pressure on myself when I’m unable to do things. And learning to adjust my life, both in terms of what I enjoy a lot — of my hobbies now are things like cross stitch embroidery, all of that lovely stuff that I can do most of the time — and things like I wear a hat pretty much constantly to shield from the light coming above, and that helps. I’ve got special lenses so that I have less fatigue with the screen. And I’ve just learned to adjust myself around it and be compassionate to myself. And I think that’s a core thing that we need as migraineurs is we need compassion for ourselves and we need those around us to have compassion for us.
And I urge you to reach out for help. In whatever capacity you can because it does exist. And you’re not alone.
And thank you to the National Migraine Centre, both for letting me share my story and for being so wonderful to me as a patient of the clinic. Thank you.
00:13:28 Linnea
Hello, my name is Linnea and I’m a 39-year-old mum of two. I had my first migraine, I remember, when I was pregnant with my second child. It was quite an experience because the first thought that I had was something was wrong with my baby. I remember having a headache for two days that would not go away. And my eyes became very sensitive to light. I was feeling very nauseous at the time, but I just assumed it was because of the pregnancy. But after two days of the headache not going away, I decided to go to the hospital to have it checked out. I stayed in hospital overnight because I wanted them to make sure that the baby was OK. I was totally convinced that, you know, it was because of the baby.
After that I had another episode of a headache while I was still pregnant a couple of months later. That also lasted a couple of days. And I thought after the baby was born that things would just get better and it will all go away. For those first few years after the pregnancy, my headaches were quite sporadic. I would have one episode every three or four months. And I just thought it was something that would just take care of itself, however as time went by, I started to get more and more headaches. That’s when I had my first appointment with my GP to let them know what was going on. At first, the GP thought that it was probably tension headaches or it was maybe because of my job because I sit in front of a computer all day. So they suggested that I get an eye test to make sure that I’m not straining my eyes too much and also they gave me painkillers that I could take whenever I got the headache. It obviously didn’t help very much because the headache still continues to get worse and worse. They then said that it was likely that I was suffering from migraine because of the symptoms that I had, especially the nausea and the sensitivity to light, because I would always have that with every headache. So they decided to refer me to a neurologist, which would have taken quite a few months to actually get an appointment. So in the meantime, my GP suggested that I self-refer to the national Migraine Centre. I was lucky to get an appointment there and the doctor asked me to keep a migraine diary where I could record all the stuff that I was eating, my sleeping patterns, to try and figure out if there was anything in particular that was triggering the migraines. At the same time, they prescribed a list of medications that my GP could give me a prescription for, to help with migraine prevention.
I had been on a weight loss diet before and I would always fall off the wagon as it is after a week or two. But this time around, because I was doing it to try and get rid of the pain I stuck with it for about four to five months. I was on a keto diet. Unfortunately, it did not really help things. I also moved on to being dairy-free for a while. I even tried a gluten-free diet because I’ve heard a lot of people talk about how different types of food trigger their migraine attacks. Then maybe that was the case with me. Unfortunately, that did not change anything. The headaches got worse and worse. I ended up having to take time off work, three to four times per week, which obviously was not very ideal. I work within a team and every time that you don’t turn up for work you feel like you’re letting other people down because they then have to cover for you. I’ve missed birthdays. I’ve missed so many different special days for my kids at school. I’ve also even missed my own birthday and had to postpone celebrating it because of migraine. And it’s difficult to explain to other people that don’t understand it because when you get a migraine, you don’t just have the headache, you have all these other symptoms, and by the time the headache actually goes away your whole body is so tired. It’s like you’ve run a marathon because until the next day you still feel so fatigued and so exhausted that you just want to lie down and recover. And for me, because I was getting the migraines three to four times a week, by the time I actually feel like I’ve recovered enough and I’ve gotten out of bed, maybe on the second or third day after the migraine, unfortunately for me the next episode of migraine is already starting, which will force me to go back to bed, so I would then end up being in bed five-six days in the week. And that is pretty much every day.
It started to take a huge toll on my life. I would be keeping my headache diary while I’m counting the days to when the next headache is going to be and because of that I wasn’t just not cancelling plans anymore. I stopped making any. I would be asleep even on the days when I didn’t have any headache because I will be so worried that if I go outside or if I do anything, it might end up triggering the headache. It is so difficult living with two children, who every morning before they actually do anything, the first thing they have to do is check to see if Mum is OK so that they know whether they can start talking, I’m not even going to say loudly, just in a normal voice. And it sets the tone for everyone’s day, depending on how I’m feeling. So it’s started to not only control my life, but the lives of my children and my parents, who I’m actually grateful for because living with them means that my children have somebody to take care of them when I’m not feeling very well.
To make things even more complicated, I was diagnosed with mouth cancer in 2021. And it was very difficult for me to go through the cancer treatment. But I can say this. The cancer surgeries that I had, which were three in total, were absolutely nothing compared to how migraine has affected my life. Because I was having surgery in my mouth, I had to go through periods of time where I couldn’t speak or eat properly. And that was nothing compared to the headache pain that I was still having at the time. I remember I had to feed through a tube which meant even my medication was supposed to go through a tube. There were times where I would prefer to crush my anti-migraine tablets first before my painkillers. Because it was just so much better to make sure that I didn’t have a headache than it was to worry about all the post-surgery pain.
I’m happy to say that I am now cancer-free. And hopefully I will also be migraine-free very soon. I’ve been very lucky to have a very supportive family and they all make sure that my children are taken care of and I’m taken care of.
I started having talking therapy at some point because I was always stressed out and obsessing over the headaches and the therapy actually helped. I was actually making plans and trying to do things outside of the house. I stopped spending time in my darkened room, which had become pretty much where I spent most of my time in and started to go outside and enjoy time with my children whenever I didn’t actually have a headache. I’ve since been referred to another neurologist who has started me on the Aimovig injection. And I’ve only been on it for two months now and things do seem promising and I’m keeping my fingers crossed that they will get better.
The only advice I can give to anybody that is going through something like this at the moment is that if one treatment doesn’t work, there’s always another avenue that you can try. And try and live your life to the fullest, especially on the non-headache days. Because we can’t let the headaches control the rest of our lives.
I am still off work at the moment. I’m lucky to have a very supportive employer, who has seen me through this journey and continued to give me support even during my time off. I hope that I would be talking about my headaches in the past tense like I do with the cancer.
00:24:50 Adrienne
Hi there. My name’s Adrienne and this is my migraine journey. When I was about thirty-two, I was doing a lot of sport and I started to get a headache at the end of the day following the sport and I just thought it was a normal headache, dehydration or whatever and just took some water. But one day I went into work and I remember distinctly having this headache, but it was on the right-hand side of my head. That was all it was. So it felt very different and very weird.
Then over time it turned into a headache that lasted three days, and it would always last three days. Whenever it came on, I knew that was it, I was in for three whole days of this right-hand sided pain that just wouldn’t go. And I tolerated it for quite a while and it used to come after sport very specifically. Any sport, yoga, swimming, running, any type of sport would trigger it and then it started to work its way into my life a bit more. So any stress, any time that my body was out of sync at all would trigger it, which was quite stressful, knowing that I was going to get a three-day headache on the back of anything. You know, hangovers were going to be a thing of the past because that would trigger them. Stress from work would trigger them. Basically, anything, a change in the weather. It just got very, very sensitive and always three days long. After a while as well as it being this searing right-sided headache, the nausea kicked in and in some ways that was far worse because it’s absolutely impossible to operate when you feel completely nauseous.
So I work in entertainment theatre as a freelancer and I have very irregular hours all of the time. Shift patterns change from week to week. Some weeks I can be on the nine to five and then the next week I’ll be on like a ten to ten for four or five days running. As you can imagine, these irregular hours really screw you up if you’ve got migraines.
Also, when you’re in the theatre, you get fairly dehydrated, so you have to be really careful to watch all of that, but having good sleep wasn’t really on the cards, so everything that feeds into a migraine, so we’re told, was a problem. It basically meant that lots of people that are successful in my industry go from job to job to job, but that’s actually not that possible when you’re a migraine sufferer like me and I met other people in the theatre that equally struggled because you just cannot keep up weird shifts from ten to ten constantly. So every time I come back off a job, I have to have a bit of a break.
So that’s quite restricting for an overall career trajectory. Another really big issue for me is that I really love sport and all of my socialising and my friends revolve around sport. And so the idea that it makes me sick every time I do it without fail is really difficult. For instance, I do Park Run every Saturday, that’s fine, but I know that’s going to then trigger a migraine. If we go and do a big run and then we want to celebrate, I know that I can’t really drink afterwards and then that’s not crucial for everyone, obviously. But it’s nice to have a drink occasionally, if that’s what you do. Also, having to manage my work and everything else I do revolving around the maximum medication per month that I could take is really stressful. So can I actually do that run on Saturday? And for me, doing sport and exercise is really important for health and I really benefit that way in being outside when my job’s inside in the dark quite a lot of the time. So it really affected my life ’cause, I have to constantly be thinking about can I do sport today? Have I got enough migraine medication for the rest of the week? Or do I need to go to work this morning? For instance, I was unable to get up, do sport, and go to work. That’s completely off the cards because I’m just going to be sick the rest of the day depending on whether the medication kicks in or not, on how severe the migraine is. So all of this has a massive impact of the constant having to manage how many migraines I can stave off with the medication on a day by day basis.
So having migraines on this scale has required an awful lot of management and it has taken a massive emotional toll. There have been moments where it’s just beyond difficult, constantly having to manage the medication, constantly having to think about what I can do today to manage work, to manage sport, to manage my life, can I go out tonight? Can I lose sleep tonight? Can I drink? Can I join in with everyone else?
And the other problem is it’s a hidden disease. It’s a hidden disability and I think it’s also to do with the attitude of people don’t understand what migraines are. They just think it’s a headache when, as I said, the nausea is far worse, actually, because you just can’t get off the floor. And the fact it lasts for three days and you have to just keep going. You have to just keep battling it. And you have no choice but to keep battling it. That’s the thing. So you just do it. And actually, my journey has been really fortunate because I’ve actually started the CGRP blockers. And so far, that’s an absolute miracle for me. But even telling this story is quite triggering because I’ve had people tell me, oh, have you tried a cold flannel? People send me articles all the time. I think for me on my migraine journey, one of the most important things really has had to be taking control of myself and really paying attention to what’s happening and trying to know my own body because a lot of the help you get is very generic and you have to be really strong and really push for what you think will work for you, because unfortunately people haven’t got enough time to really look into what your specific issues and needs are. So as far as borrowed medications go and things like that, I’ve tried some but none of them really worked and I really, you know, like I’m sure a lot of people feel, want to try the medication that’s actually been developed for migraine, and I decided that was what I was going to try and do and I really pushed for that and the Migraine Centre were absolutely instrumental in helping me get that. And I would say to anybody, go and see the migraine centre, get yourself on that list and also get yourself on all the NHS lists, get yourself referred to headache clinics and just do everything you possibly can. The Migraine Centre are amazing because they have a bit of time to listen.
I mean, the consultants are fierce, I won’t deny that they really, you know, they gave me a tough time over the triptans, you know overuse of triptans and all of that. But ultimately they actually listened. And they’re best placed and enthusiastic about helping you and telling you what your options are. One thing I do wish is that the mental health impact of having migraine and managing it could be acknowledged a bit more. The upshot of being at the Migraine Centre was that I was really lucky and I was able to get the CGRPs which I wanted to try and for me right now they’ve worked like magic, I’ve literally got my life back and I feel really emotional even talking about it. And what was great was just how happy the consultants are when you tell them that it’s working, it’s such a pleasure and I hope that other people get that opportunity as well.
00:32:27 Thank you for listening to the Heads Up podcast. Visit our website to book your appointment with a world-class headache doctor, wherever you are in the UK. There is no need for a referral. You can refer yourself. Our headache specialist doctors are looking forward to helping you soon.