Transcript: Migraine and Mental Health [Beyond Migraine: Series 1, Episode 1]
Host and Guests
Debbie Hutchinson (Host)
Aoife Gallagher (Guest)
Jane Whelan (Guest)
Dr Sabina Brennan (Guest)
Introduction
You are listening to Beyond Migraine, a six-part podcast series created for people living with migraine in Ireland. Brought to you by the Migraine Association of Ireland and Teva Pharmaceuticals Ireland.
The views, information or opinions expressed during the Beyond Migraine podcast series are solely those of the individuals involved and do not represent those of the Migraine Association of Ireland or Teva Pharmaceuticals Ireland. The primary purpose of this podcast series is to educate and inform and is not a substitute for professional diagnosis or treatment. This podcast is supported by funding from Teva Pharmaceuticals Ireland.
Please note any comments posted are not being monitored by Teva Pharmaceuticals Ireland.
Reporting of suspected adverse reactions is important. It allows continued monitoring of the benefit/risk balance of the medicinal product. To ensure correct adverse event reporting, healthcare professionals and patients are encouraged to use their National Competent Authority reporting scheme, or you can also report via: www.tevapharm.com/contact-us/
If you have been affected by any of the topics or themes discussed in this episode, please visit yourmentalhealth.ie. You can contact AWARE on Freephone: 1800 80 48 48 or the Samaritans on 116 123.
Migraine and Your Mental Health
Debbie: Today, I am delighted to be joined by three guests, all with very different experiences, to further understand the relationship between migraine and mental health. We have Aoife Gallagher, who lives with migraine following a viral infection a number of years ago. Aoife discusses her condition on her blog, My Headache Life.
Debbie [Cont.]: Aoife, you’re very welcome to the programme.
Aoife: Thank you, Debbie.
Debbie: I am also joined by Jane Whelan, a Migraine Association patient ambassador. She herself has suffered from chronic migraine for more than 30 years. You’re very welcome to the show, Jane.
Jane: Thank you, Debbie.
Debbie: And Jane also teaches yoga, and teaches yoga classes specifically tailored for people who are suffering from migraine and other chronic pain conditions.
Debbie [Cont.]: We're also joined by Dr Sabina Brennan, who is an Irish neuroscientist. She is a current adjunct assistant Professor at Trinity College Dublin.
Debbie [Cont.]: Sabina has her own podcast on brain health and how to transform your everyday brain. She's also an author of the best-selling book, A Hundred Days to a Better Brain, and her most recent book, Beating Brain Fog. And Sabina herself is a migraine sufferer, so she has a very unique perspective on the condition.
Debbie [Cont.]: You're very welcome, Sabina.
Sabina: Thank you very much.
Debbie: So, Aoife, I just wanted really to go to you first and to talk to you about your story.
Debbie [Cont.]: So, throughout this podcast series, we're trying to talk to people to demonstrate the real impact that migraine can have on their personal lives. And your story, particularly, really shows the very real everyday impact that migraine has on your life.
Debbie [Cont.]: Tell us a little bit about when you started getting migraine?
Aoife: My pain literally started overnight. I wouldn't... I would never have had a history of migraine or anything like that, so I literally woke up one day with a really severe headache. But over the following few days, it got worse and worse and worse until, eventually, I went to the doctor. I was rushed into hospital because they weren't sure what was going on. Initially, it was thought it was meningitis or viral meningitis. But it turns out it was just a viral infection, a severe viral infection that we don't know the cause of.
Aoife [Cont.]: That was almost six years ago. It was 1st April 2015, and I've had a headache since. It has never left. It has never gone, and it's at varying degrees in severity on a day-to-day basis. Some days it's very manageable, and other days I'm literally passing out with pain. So, it's ... that's literally been the journey for the past six years.
Debbie: So, you're suffering from migraine and new daily persistent headaches. You've got two conditions, really, do you?
Aoife: Yeah. So, basically, it's... I'm in the lucky position because I get to have a headache all the time.
Debbie: Right, so you're waking up every day with a headache. And in terms of the mental health impact of that, I just can't imagine waking up with a headache. How do you cope with that reality?
Aoife: In the beginning, it was very difficult, I won't lie. It was an endless round of, every day, hoping that that was the day the pain was going to be gone. And, every day, going to bed realising, okay, that's another day gone, and I'm still not any better. And then eventually, over time... it's amazing your body actually gets used to having pain. So, I can function pretty good when the pain is not too bad and then on the days that the pain is awful, I've just... I've learned to adapt to it.
Aoife [Cont.]: I've learned to get used to living with the pain, and there were some days over the past six years, there's been like days where it was really, really tough. It was a huge struggle, and my mental health definitely took a battering, to say the least. But I think, over time, I just... I had to adapt to living with the pain.
Aoife [Cont.]: And rather than having the pain control me all the time, by learning to live with it, I suppose I have better control over my own life, and I can live it better, and I can manage the pain better, and I can cope with it better.
Debbie: I think that's a really important message there within that. Because I think, for some of us that have migraine - maybe even not as severe as yours Aoife - is that we're always looking for a cure. And there's a grief in there about the life before migraine. And in some ways, we have to just... not to accept it... to look for better outcomes. But to accept that we have a condition and that we're not trying to constantly cure it. Is that part of your thought process as well?
Aoife: Yeah. For a long time, I felt that if I accepted the pain, then I was giving in to it and giving up hope of anything.
Aoife [Cont.]: But then, over time... I realised that if I accepted the pain but didn't feel bound by it, it had given me a freedom that I could say:
Aoife [Cont.]: "Okay, right, I'm going to have this pain. It's chronic; it's likely I'm going to have it, you know, off into the distance. But I can do more. There's more to me than just headaches. There's more to me than just this constant pain. That the person I was before is still there, just slightly different."
Aoife [Cont.]: And that gave me the freedom to just not always be looking on the negative side. I started looking at, "Okay, I can't do this, and I can't do that, but I can do these other things." And I've started looking at the positives that are within it.
Aoife [Cont.]: And, even if my pain was to disappear today, I couldn't go back to the life I had before because I'm a very different person now. And that's because of the pain I've had over the last few years. I suppose what I'm trying to say is: You learn to live with the pain, but you start to see beyond it.
Debbie: Yeah. And Jane, you've suffered from migraine since you were... I suppose since you were young, even though you may not have realised it was migraine.
Debbie [Cont.]: So, what Aoife speaks about - that kind of impact and acceptance - does that speak to you in terms of your own experience of migraine?
Jane: Yeah. It's a little different, though, because I've never known life without migraine. Now, I didn't really have migraine as a child. I probably did, if I look back now, the signs are probably there, but it was in my teens it really became a thing.
Jane [Cont.]: I'm the typical person who transformed from being the episodic, having-a-migraine-maybe-once-a-month-as-a-teenager, and then in my 20's, growing, growing growing, and by my late 20s becoming chronic. But that acceptance... I know exactly what you're talking about... but, for me, it's just been part and parcel of my life.
Jane [Cont.]: I didn't have to change from not having it to changing to a life with it; it's just part and parcel of my life. But there's definitely the whole accepting and coping and living with it... that has been... it's taken a very long time. I think... because when I was younger, there was a little bit of denial because it was only episodic, so I didn't think about it in between attacks.
Jane [Cont.]: I didn't want to think about it, and it was only when it became chronic, and still there was probably a bit of a denial, you know: I'm going to do everything everybody else can, this is not going to stop me from doing things. And I paid the price for that in a lot of cases.
Jane [Cont.]: And I persisted in a career that probably was a terrible career for somebody with bad migraine because I was travelling constantly. I think it's really only in my forties that I've sort of got a handle of... I've given up on the… It's never going to go away, or it's unlikely to go away. It's probably just going to be always there.
Jane [Cont.]: So, it is just learning to adapt, as you say, and live with it and doing what you can to manage it the best you can. So, there's a certain acceptance there in just helping you cope.
Debbie: And Jane, you adapted it to the extent. You've mentioned it briefly there. Maybe you could tell us a little bit more about that. I mean, you had a career organising medical conferences, and it would have involved a lot of travel and high pressure. But you actually made the decision to change your career, didn't you, because of the effect it was having on your health?
Jane: Yeah. I did that job for almost 12 years. It just wasn't a very healthy lifestyle for anyone, really, but particularly for anybody who has any issue with the brain. I was also living with endometriosis - they're the two conditions. Really, living a life like that was just not good.
Jane [Cont.]: So, I was doing a lot of getting up at 4 o'clock in the morning, taking early morning flights, which meant by 3 o'clock that afternoon, I had a migraine. Time zones, erratic eating and, then, obviously working in events are incredibly stressful - just a lot of instability. So, I reached a point where I went, “What am I doing? This is not any way to be living, and this is not helping my migraine.”
Jane [Cont.]: And that was a really big decision, and I think a lot of people thought I would still work in events but maybe cut out the travel, but I just went, "No. I actually don't think that this is a healthy lifestyle - for me to be living with the irregular hours and the instability."
Jane [Cont.]: There's always change in events. I needed something with a bit more routine and I now work in a job where it's very much nine to half five, Monday to Friday. There's no extra work, it's office-based, and if you told me that fifteen years ago, I would have gone, "That's very boring, I wouldn't like that at all."
Jane [Cont.]: I love the thrill of travelling, going to different places, and meeting different people. But I have to say that the routine has been really good for me and good for my brain.
Debbie: And that's very hard when you're younger, as well, because it's that thing... You don't want to be missing out, and you shouldn't miss out to a certain extent.
Jane: No. And I think I was very much in denial about how stressful it was and how I was quite anxious about things. And I just didn't even recognise it in myself. And I look back now and go, "What was I doing?" I always thought flying triggered migraines, or it was the stress of meetings and stuff.
Jane [Cont.]: And it was only when I started getting migraines on the way to the airport that I went, "Oh, it's not the aeroplane and the flying that's giving me the migraine. It's the whole build-up and the anxiety. Have I got everything ready for this meeting that I'm going to? I haven't slept properly..."
Jane [Cont.]: That was a real wake-up call to me to go. Anxiety is a big part of this, and I've got to get a handle on that.
Debbie: Now. Teva conducted a survey in 2020 - the Beyond Migraine survey. And in that survey, 51% of people with migraine are frustrated, 53% are exhausted, and 30% feel depressed and sad.
Debbie [Cont.]: And Sabina, I just really wanted to go to you to talk about those comorbidities of anxiety and depression that are recurring with people with migraine. What is that impact? Why are so many people suffering from anxiety, depression, and migraine?
Sabina: That's a very interesting question, and I don't think science has the full answer yet. There are a number of possibilities.
Sabina [Cont.]: Two of the key possibilities are - as you mentioned there when you were talking to Aoife - it's the burden of the constant pain. And, you know, who wouldn't feel depressed? And Jane also mentioned - you know - the anxiety linked in with her migraine.
Sabina [Cont.]: So possibly, maybe are people with migraine more prone. Is it sort of chicken and egg, in that regard?
Sabina [Cont.]: The other possibility is that migraine, depression, and anxiety share a common pathophysiology, so that there's something in the way the brain operates that is shared between anxiety, migraine and/or depression. So, that's a possibility. But I don't think that there are full answers. But I think what is important is that we can learn from those things that there are... they can point us towards solutions. And Jane found her own solutions - and I mean for anybody, even for people who don't have migraine - regularity is critical to the functioning of your brain.
Sabina [Cont.]: Your brain literally looks after absolutely everything that you do. It manages your emotions. It controls and regulates your hormones, and then your hormones, in turn, regulate your behaviour. It keeps you alive. As Aoife said there, she got a very severe viral infection. And we're seeing now with long COVID that a lot of people who have had COVID - sometimes mild, milder COVID - are now developing migraines, and that's kind of not surprising in some regard in that they're seeing some sort of assault on the brain through the infection.
Sabina [Cont.]: So, they're pointing towards how we can deal with it. Stress is classified as a common trigger of migraine, and stress itself can gradually develop into actual, you know, a medical diagnosis of anxiety or a generalised anxiety disorder. And then, if you're constantly stressed, and in pain, you can understand where the depression might come in.
Sabina [Cont.]: So, I think it's absolutely critical for people - for anyone, but particularly for those of us who live with migraine, to manage our stress. And that's very, very possible to do. And one of the ways that you've both spoken about managing stress is acceptance. Sometimes our stress comes from constantly trying to change things: "Why can't I have it this way, why can't it be that way, what can I do?"
Sabina [Cont.]: And I used to if a door closed on me, metaphorically speaking, I would bang and bang and bang on that bloody door. And as a result, it's with wisdom and with age that I've realised actually if I just turned around, the draft from that door banging has opened two other brilliant doors and opportunities.
Sabina [Cont.]: So, I have chronic daily migraine, and I've had it since I was a child. I haven't got my diagnosis since I was a child, but I do very much recall my mother bringing me to the doctor when I was 9 to find out why I had headaches every day. And interestingly, he said, "Oh, she's trying too hard, Mum, to please."
Sabina [Cont.]: But I suspect that there's probably some truth in that because I think many migraineurs tend towards perfectionism or are very hard working. I think it sort of speaks to the fact that a lot of people with migraine don't talk about their migraine.
Sabina [Cont.]: I actually never told anyone I had migraine. And it was when I was actually working on a global committee about migraine and brain health, and I was brought on it as an expert in brain health. And they were discussing how we could improve migraine in the workplace or whatever and some suggestions, and I said, "Well, I know that bloody wouldn't work for me." And someone said, "You have migraine?"
Sabina [Cont.]: I actually realised at that moment that that was the first time that I said it sort of publicly. And I really don't think I'm alone in that. And I think that's another way that you could actually manage and control your migraine, and why it's critical for us to make people realise that migraine is not just a headache. It is a neurological condition.
Debbie: And, Jane, for someone like yourself who has always lived with migraine... You had spoken before about your family and how they just accepted that you would miss things because you'd be lying down after getting a migraine. That must have affected you as an adult?
Jane: Well, there are a few family members who have migraines. It was just part and parcel of life. It was nothing out of the ordinary, and I have to say, my family are amazing. They're so supportive and so good, I don't want to make it sound like they're not. And, likewise, I've friends who are fantastic as well.
Jane [Cont.]: But yeah, there is always that little sense where they go, "Oh, where is she? Oh, she's gone for a lie-down. She has a migraine."
Jane [Cont.]: And they're not making a fuss of you. You don't want a fuss. That's fine, but you do feel like you're always the person who's not around or letting down.
Jane [Cont.]: And I realised I'm very bad at committing to doing things and saying - volunteering and saying - "Oh, I'll do that. I'll cook the dinner. Everyone, come to me this weekend for dinner." Because I'm always afraid of, "What if I can't do it, and I have a migraine, and I have to let everyone down?"
Debbie: Yeah. That is a real impact, definitely. There's another aspect of migraine.
Debbie [Cont.]: If you have chronic migraine and you have a migraine every day, or you're going through a particularly chronic period, we're told constantly (and it is right) that lifestyle changes, dietary changes, mild exercise, they can help you. But it's also... it's hard when you're in that vicious circle that you feel so bad every day. How do you get the wherewithal to go out?
Debbie [Cont.]: Aoife, I know that you yourself have started walking during lockdown, and you've seen some benefit from that. Do you have any advice for people that are maybe in that situation that you're in? Is it a little bit every day, just a little bit every day of exercise?
Aoife: Yeah, I was frightened because I would also - from the viral infection - I would have developed chronic fatigue syndrome.
Aoife [Cont.]: So, not alone is it the fatigue of dealing with the pain all the time; it's also if I push my body too far, I pay the price. And literally, I'd have a flare-up, and there is absolutely nothing I can do. I am too tired to do anything. I'm fatigued.
Aoife [Cont.]: I suppose the background to it was that, for a spell, I was using a wheelchair and a walking frame because I just was too weak to do anything else. And then, with a lot of hard work with my local physio, I gradually built up the strength back into my legs and my arms. And then, to keep that up, I had to start walking, just something to do every day.
Aoife [Cont.]: It was also getting me out of the house because I don't leave the house if I don't have to. So, getting out for a walk every day was like that headspace for a while. My walking comes in fits and starts. Sometimes, I can walk for kilometres. Like, last year, I did the women's virtual mini-marathon. I did the 10K. But then, roll on a couple of months later, and I wouldn't have been able to walk 10 metres, never mind 10 kilometres.
Aoife [Cont.]: So, I have to listen to my body when it's tired. So, I will walk, and I try to walk every day or most days. Say, like yesterday morning, I went out for a walk with the wind and things like that, and I noticed that my head was starting to get very sore. So, I just said, "Right, that's okay." After 2 kilometres, I said, "You'll have to go home."
Aoife [Cont.]: And I did that, and I had a full-blown headache for a while. Other days I can go out, and I can do the 5K, and that doesn't take a flinch out of me. But it's about listening to your body and paying attention because, for me, I find if I push through that barrier, I will pay the price. And I will be down in a heap for days after it.
Aoife [Cont.]: So, if I listen to the body when it's telling me to stop, then I'm better able to go out again the next day. So, it's like bit by bit. Then I can add a kilometre on every... if I start at 2 kilometres this week, in two weeks' time, I'll do 3 kilometres, and two weeks after that I'll do 4 kilometres. And if I have to knock it back to 2 kilometres per week, that's okay. I don't put any pressure on myself anymore.
Debbie: There's an acceptance within that again, isn't there? You're just accepting that one week might be worse. One week might be better, but that just to do a little bit every day.
Jane: I think you're right. People think I spend my time doing all these crazy things, and actually, I don't.
Jane [Cont.]: People think I do yoga, and they say, "You do yoga every day?!" And I say, "Not physical yoga every day," because there are days where the fatigue is just too much. Or, if I have a lot of pain, I can have the pain right down one side of the body, and I just cannot do things.
Jane [Cont.]: But I came to yoga maybe about 15 years ago. I started doing a bit more yoga practice, and it was actually when I thought... You know how a lot of people with migraine get a lot of neck stiffness?
Jane [Cont.]: And I had it all backwards, thinking, "If I could just stretch out my neck and shoulders, I would not get these headaches anymore." And I thought, "If I just did more yoga, surely this will all go away, and I'll feel so much better," and that's kind of what got me doing yoga. And of course, now I know the migraine starts in the brain. The neck stiffness is a symptom; it's not the cause.
Jane [Cont.]: But, through the yoga, I have learned so much. And, actually, what I find now: Yes, the stretching and all that gentle kind of movement are great, particularly after a bad attack when you have all the tightness and tension. I find that it's quite nice to undo everything.
Debbie: So, Sabina, just to go to you... just about that whole issue of stress reduction, exercise and brain health. I mean, what's the evidence out there in terms of what can people do to improve their brain health?
Sabina: Yeah. There's very strong evidence there in terms of generally improving your brain health. And I think like when you have any sort of disease or disorder, if your general health is good, you can see how that will benefit you. And I think the same really applies with the brain. And particularly as migraine is a neurological condition.
Sabina [Cont.]: You know, and just listening there for years, Jane, I thought the same about my neck and shoulders. And it was only very recently that my migraine... I never even said it to my neurologist. And it was only when he said to me, "But surely that's all that - all that actually comes from your head rather than the other way around," and I had it the other way around.
Sabina [Cont.]: I have it at the moment. I actually have quite a bad headache at the moment as we speak, and my neck is like I have iron bars down it and across the shoulders.
Sabina [Cont.]: I also have fibromyalgia which I think is probably really just... I think that's a name that's put on it. I think it's probably related to the migraine. You can touch, barely put a finger there, and it would feel like it's burning at times if I'm bad.
Sabina [Cont.]: And I do think migraine can be related to other issues as well. I have an autoimmune condition too. But I think the key is, physical exercise is actually really very good for your brain, and listening to Aoife self-manage there...
Sabina [Cont.]: I have some days when I am really, really bad. But I think it's really important because I think there's a real danger line... there's a fine balance there, when you have migraine or any other chronic condition, to rest up all the time.
Sabina [Cont.]: And actually, if you just take the analogy with a broken ankle or a twisted ankle, there is a period in which you have to rest up. To allow the inflammation to go down, and to allow the acute phase to go through and run its course.
Sabina [Cont.]: However, there comes the point where you have to use that ankle again, or you will lose function. And it is painful, even with a twisted ankle, to start using it again, and you actually start maybe not to use it properly. And you actually have to go, "No, I actually have to put my foot fully down. It is going to hurt, but I have to go through it."
Sabina [Cont.]: And the same applies - you know - when it comes to exercise. It's good for us for so many reasons. We're talking here about mental health. Physical exercise is really good for your mental health. Getting outside, particularly if you go walking and doing that. But it's also really good for your brain - and this is important too - because migraine can be related to vascular issues.
Sabina [Cont.]: And the thing is that your brain depends on your cardiovascular system for the oxygen and nutrients that it needs to function. It's a really, really high energy organ. It only weighs 2% of your body, but it consumes 25% of the nutrients circulating at any point in time.
Sabina [Cont.]: Now, if you don't have a healthy cardiovascular system - if that's compromised in any way through diet, lack of exercise, being overweight or obese - your brain is not going to get the oxygen and nutrients that it needs in a regular way.
Sabina [Cont.]: So, anything you can do to look after your cardiovascular health and heart health will benefit your brain. I mean, anybody - I think most people with migraine - will know that if you're in a stuffy room, you'll get a migraine. You're really just not getting the oxygen that your brain needs. And most people actually will begin to feel headachy in that context.
Sabina [Cont.]: So, physical exercise is critical.
Debbie: And what about parenting because I think that's one of the things.
Debbie [Cont.]: I know you say take a nap and get some sleep. And I think in the Teva survey, 57% of people - which is a huge amount of people- felt that their children's life was really impacted by migraine. And in terms of mental health, that's a huge worry and stress, and it's something you can - to a certain extent - manage your own life.
Debbie [Cont.]: But trying to manage your children's life and toddlers who don't sleep, and your baby that keeps you up at night... that's a tough one. And I know you yourself had that experience.
Sabina: Yeah. I did. I did, and it's a tough one. And on top of that, when I would have those headaches, I'd be pretty damn irritable and wouldn't be the nicest mum in the world. And, on many, many occasions, I had to apologise to my kids, and sort of say to them, "When mummy's like this, it's really important that you just stay and play quietly."
Sabina [Cont.]: The slightest noise you see is just so irritating if you're in that kind of context, and kids just don't understand that. I would say that it really is important that if you have young kids and kids like that, you've got to look after yourself. It's not being selfish. It's being sensible. And perhaps consider factoring that into a routine that actually if you really do need a nap to sort of actually train your kids to have a nap at the same time as you.
Sabina [Cont.]: Or else you sleep when your kids sleep and damn the housework. Or actually, you know what, if you have... this would have been like I did at one point... Rather than spend money on a night out, I actually get someone in to help clean the house. And then I could focus when I was good on being with my children rather than going around and cleaning the house.
Sabina [Cont.]: And for me, I wasn't loaded. I didn't have a lot of money, but most people have enough money to go out at night or whatever, and probably drink alcohol and eat to excess. So for me, that made much more sense. The whole quality of my life could improve by using the money for that instead of that.
Debbie: Yeah, it's a matter of coping and getting through it. And, Aoife, just to go back to you a little bit there... so this has had a huge impact on your own life, in terms of you were housebound for many parts of the year, the last year. So what kind of impact has it had on your own family relationships?
Aoife: My kids... When I got sick, my youngest was five, and now because I'm six years into this, he actually only knows me as having headaches. He doesn't remember the time before that. And that's tough because you know he sees his other friends out and about - pre-COVID probably - out and about with their mums at the local football games, and I was usually missing. I wasn't the mum that was there. I wasn't the mum that was able to help out over at the school or anything like that. I was the missing mum.
Aoife [Cont.]: My older kids, while they have a great understanding of what was going on, they had to grow up a little bit faster than other kids the same age. They had to take up more slack with chores around the house, and they became really good at doing the shopping. They're much better at doing the grocery shopping now than I am.
Aoife [Cont.]: And my husband, he was working every day. And because especially in the beginning when I was so bad, he had to be mum and dad. He had to try and keep the house going, and he was out working all day, every day. He had to try and do all the things with the kids that I would have been doing before that.
Aoife [Cont.]: So, it was like a major shift, and part of that for me was... I struggled with that shift in that I went from being the mum that cared for everybody. I knew where everything was. I looked after everything. I did everything. To suddenly... I was the one that had to be cared for.
Aoife [Cont.]: And it was like a major shift in mindset. The whole family dynamic changed, and I started to feel very helpless and that whole feeling of being a burden... and all those different things and everything that comes with that. I know it wasn't my fault. I wasn't to blame for what happened. But neither was it my children's.
Debbie: And would you say communication is key there? Because sometimes parents can be afraid to talk to kids about conditions. But explaining to them what's happening - is that an important point in the relationship?
Aoife: Yeah, especially because mine came so suddenly, unlike Sabina and Jane. Mine came so suddenly; we all had this hope that it was going to go away.
Aoife [Cont.]: And the day that I went, that I was firstly diagnosed, the neurologist said, "You've daily persistent headaches, and it's chronic daily migraine."
Aoife [Cont.]: And my husband's first words were, "Well, what do we do to get rid of it?"
Aoife [Cont.]: And the neurologist said, "There is no cure. That's the bottom line. There is no cure; it's about finding a treatment that is going to help you manage."
Aoife [Cont.]: So, I had to come home and have that conversation and try and get a grasp on it myself first. And then I had to explain to the kids that this is something Mammy's going to have. But I always tried to turn it around: "Yeah, ok, this is a headache that Mammy's going to have, but we need to find a way to deal with it."
Aoife [Cont.]: So, on the days that I'm good, I try to do more with the kids. On the days that I'm bad... they all have their jobs, and on the days that I'm really bad - where I actually pass out with the pain - they're like a wee army. They all just slot in, and they all have their wee jobs that they do. They know exactly what will happen. They know to get out the ice pack. They know to get out, you know... everybody knows what's happening. They're like a finely tuned army.
Debbie: And how have you been coping in the pandemic like in lockdown? Has it been better or worse for you?
Aoife: A bit of both. I was so used to having the peace and quiet every day because, for me, noise - it's one of my biggest triggers. Especially the hum of people talking.
Aoife [Cont.]: So, having everybody at home in the house at the one time was yeah... I would often disappear out to the kitchen or out to one of the quiet rooms. There are times I just have to say, "Can you all just be quiet? Five minutes. Just give me five minutes, so this can settle."
Aoife [Cont.]: They're so used to me now. They actually know to look at me what level my pain is at. So, everybody just... I suppose it's just from living with it and looking at me all the time. They know exactly what's happening.
Debbie: And Jane, what about you? Has the pandemic been good or bad for you? You're working from home, obviously, and you think of migraine in the workplace being a triggering environment often for people. So is it better that you're at home working?
Jane: It's been a complete mix, a complete mix. And actually, my office is very close to where I live, and I have had to go in a few times with something I can't do at home. But I've been on my own in there, and I've gotten very used to being in the office on my own in the quiet.
Jane [Cont.]: I've gotten much better at saying no. And I've got to really maintain that now because I've realised doing less is better for me in managing my migraine.
Jane [Cont.]: Now, on the other side, to flip that around completely... what I have found just in recent months, my migraine has gotten so bad, and it's a combination of... I think the weather was so terrible in February, I wasn't out doing my walking and exercise, and I wasn't getting as much fresh air. That windy turbulent weather is really bad for my head as well.
Jane [Cont.]: I was doing a lot less, and I think not having the usual distractions in my life has made me have to face up to some other - kind of, I suppose - life events. I've had various things happen over the last seven years, and this has been a little bit confronting.
Jane [Cont.]: There are things there that I thought I was okay with that I've now gone, "You know what, now that I've had a little bit of headspace to think about these things, that's brought up some other stuff and some anxieties there," that I'm going, "Yeah, I need to look at that." The pandemic has been really interesting. I've learnt a lot from it, so plusses and minuses.
Debbie: And one of the things that struck me. We talk about people that are kind of locked in this circle where they have a condition, and it's hard to get out, and it's hard to manage it.
Debbie [Cont.]: So, it occurs to me that people who have loved ones or know people who might be listening to this podcast because they want to help somebody. So, Sabina, what advice would you give to people listening in? How to best support and help people?
Sabina: That's a very good question.
Sabina [Cont.]: I think it is funny. There's a really fine line between self-awareness to benefit you and blame. I think, really, if you know your loved one's triggers, a little bit of sacrifice in that regard can make a huge difference.
Sabina [Cont.]: I mean, I'm like Aoife. Noise. And I also always feel there's just so much noise going on in my head anyway, and it's me self-talking! I mean, I don't have tinnitus.
Sabina [Cont.]: But I cannot bear extraneous noise, and I will notice noises that none of my other family members would notice. I'd say, "What's that?!" And I really can't listen to other people eating. It sounds awful, but it really just sets my brain off.
Sabina [Cont.]: And my husband is quite the reverse. He loves constant noise. He loves... and I have one son, he has dyslexia, but sort of linked with that is a door banging. You know, banging things down and not realising. He can't quite judge the distances.
Sabina [Cont.]: And so, you're on edge with this pain. My husband very kindly... he would constantly - when we were married first - he'd always have a radio on. And he'd be singing music around the house, and he'd have the TV on nearly in every room.
Sabina [Cont.]: You know we just had a conversation, and I just said, "Look, this drives me insane. It really sort of makes life unbearable."
Sabina [Cont.]: So, we don't have a radio in the house anymore, and he will go to another room. And he will sort of say, "Do you mind if I watch this and which room do you want?" because I might be reading, and we manage it that way.
Sabina [Cont.]: So, I think that would be helpful. It does mean that the other person is compromising. But, for the person with migraine, it can really make a huge difference.
Sabina [Cont.]: And I say that as well about the brain fog. With brain fog, you can be an awful lot slower at processing information. And you get frustrated with yourself, and other people get frustrated with you, perhaps.
Sabina [Cont.]: But the thing is, if you have an injury to your hip, or you're on a stick, or you're are recovering from an operation, people will just wait up for you. And they'll adjust their pace to walk with you because they can see it. And we just need to raise awareness that if I'm struggling to find a word, or it's taking me a bit longer, don't make fun of me.
Sabina [Cont.]: It's fine if I make fun of myself because that's a way to cope. But, just give me the time.
Debbie: And brain fog is such a big one for migraine sufferers. How do you cope with that, Jane?
Jane: I'm not getting it as badly as I was, but I think I had it for years, and I didn't even know that was what it was. I just thought every woman was a victim of that. And that it took everybody two hours in the morning to kick into action.
Jane [Cont.]: I also thought... I grew up in a household where, like, getting up early was a good thing. Whereas it took me forever to get out of bed and get going. I had the sense then that it was laziness and that there was something wrong with me, and I was a bad person. And it's taken me years to kind of shift that. Now it's just the way my brain is. Whereas at 11 o'clock at night, I'm sharp and I'm awake.
Jane [Cont.]: My best hours for work are actually around 5 P.M., which is the opposite of most people. It's no use asking me to do something at 8 o'clock in the morning. But ask me to do it at about 5 o'clock, and I'll happily stay working for a couple of hours, no problem!
Jane [Cont.]: Definitely, I would have had a lot of brain fog between attacks. It's lessened a little bit, probably because I'm doing some things to help. When I'm going through a good phase of migraine - where I'm only getting a couple of attacks a month- in between the attacks, it's all that extra stuff like the brain fog. Or I might have these random pains that are not quite migraine, but I know it's all related to my migraine.
Jane [Cont.]: And, sometimes, that is actually more debilitating than the attacks. At least when you have an attack, you kind of go, "Right, I have my medication, and I'll do XY and Z. I have my ice packs, I can get a lie-down, I can do all the things I can do."
Jane [Cont.]: But it's the in-between when your kind of half functioning. You're functioning at 75%, and, like that, you're trying to say to somebody, "I need to dim the lights a little bit." I would be very photosensitive, even in between attacks. So, I'm constantly going around dimming lights in the house, turning down radios a little bit.
Jane [Cont.]: But I could be in a restaurant or café, and I'll say to a friend, "Do you mind if we swap places where we're sitting," because maybe there's a reflection of light in a mirror. Or, I'm very sensitive to movement. If somebody... even in a busy café, where a lot of people are walking and moving around, it can really upset my brain and make me feel quite unwell or a little bit dizzy.
Jane [Cont.]: You're always having to ask for these little accommodations and stuff, and you're right, people don't... you don't want to sound like you're being fussy and a bit of a pain in the neck. But you're trying to get people to understand. And you're absolutely right because there are people who have maybe never had a headache in their life.
Jane [Cont.]: They just have no clue or some people who have had a few, and they are quite empathetic about it. But sometimes there is a bit of that, "Oh, here we go again."
Debbie: That brain fog for me actually really affects my work. That's where I find it most impactful. It's that if you don't have... you have to stay at work because you don't have a migraine, so you can't say to people, "I have a migraine, and I have to go home."
Debbie [Cont.]: But if you're at work or you're giving a presentation, and like you're looking for a word. And no matter how many times you think of that word, that word is not going to come.
Debbie [Cont.]: I've looked at a kettle and said to my husband, "I know what that is; I know it's called a kettle." But I can't think of the word 'kettle', and then, about an hour later, I might have a migraine attack.
Debbie [Cont.]: And Aoife, you must be dealing with this. Is this an everyday occurrence for you, that kind of brain fog?
Aoife: Yeah. Like Jane said, sometimes I find it's worse than other times.
Aoife [Cont.]: Like that, I can be in the middle of a conversation with someone, and it's just like my mind just totally blanks. And it's like I have no idea what I was saying. And then people try to help you out, and I have to say to them, "It doesn't matter how many reminders you give me, it's gone. I have no clue what I was even speaking about."
Aoife [Cont.]: They'll go, "Oh, you were saying..."
Aoife [Cont.]: And I say, "Yeah, but no, it's totally gone."
Aoife [Cont.]: Or, you'll say, "Get me that thing over there," or be pointing at stuff. And, the kids are like, "What you want?"
Aoife [Cont.]: And I say, "...That thing."
Aoife [Cont.]: There's an example of one day, we were away in the car with the kids, and I was trying to ask them did they want to go for McDonald's. And all I kept doing was the 'M' sign because I couldn't think of the word.
Aoife [Cont.]: And I kept saying, "You know... the thing," and I was doing the 'M' sign all the time. And eventually, when I copped down, it was like a game of charades. Things like that, yeah.
Aoife [Cont.]: Sometimes, if I'm in the middle of company, I'll be saying something when it goes, and I'll just be like, "Yeah, tune in next week."
Aoife [Cont.]: As you were saying, you make a joke of it yourself. Some days it's good and not too bad. And then other days, I'm right off.
Sabina: Do you mind if I just kind of pop in on that?
Sabina [Cont.]: So, what you described there, in terms of not being able to find the words, that's a language issue. It's not a memory issue.
Sabina [Cont.]: Do you know what I mean? And similarly like decision-making. A lot of people don't realise that. I mean, if I have bad brain fog, I can't even decide what to wear. And that would hit me... I used to travel a lot (pre-pandemic) as well, and sometimes it would take me hours to pack because I could not figure out what I should put in my case. And I would be looking, "What's the temperature like over there? Do I need to pack this?"
Sabina [Cont.]: And I mean that's the level. I've spoken to people with brain fog who can't even prepare a dinner they've been preparing for years because they can't get it together to figure out what order things go in or what ingredients they need.
Sabina [Cont.]: So, I think it's on us at the moment to actually empower ourselves. Here's what's wrong. This is what's wrong. This is what it's doing to my life. Can you help me?
Conclusion
You’ve been listening to beyond migraine. A six-part podcast series created for people living with migraine in Ireland and brought to you by the Migraine Association Ireland and Teva Pharmaceuticals Ireland.
NPS-IE-NP-00376 February 2022