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When I came to see you, it was debilitating, vomiting, not able to move, and I thought
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I was having a stroke.
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But I also think what you've done has made me aware of myself, which is almost more important.
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Welcome to Migraine Heroes, a podcast for people living with chronic migraines with
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years of pain, misunderstanding, and lack of answers.
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I'm Diane Ducarme.
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I've helped more than a thousand people reduce the burden of migraines and feel more in control.
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My mission in life?
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To help a million people.
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Each episode brings you grounded insight into what your body might be asking for and what
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Just to keep you fully supported, this podcast is educational.
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For diagnosis or medication, always work with your doctor.
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Now take a breath and let's dive in.
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Thank you very much, Samantha, for joining me today.
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It's nice to be here.
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Okay, so let's just go right in.
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So when did migraines start for you?
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I was going to say puberty, but it was before puberty.
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I think 11, 12, something like that.
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And in my family, we called them headaches.
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My mom had headaches, but not the kind that in my head I associated later on with migraines.
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You know, she wouldn't be in bed in a dark room.
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She'd just say, I have a headache today.
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So when I was growing up at school, I'd be in the nurse's office getting paracetamol
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So how does that work?
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Well, you just go to the nurse and say, I've got a headache,
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and the nurse gives you some paracetamol.
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And then after a while, it sort of, when I was about 14, my parents were like, hang
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on, they're getting more insistent and more frequent.
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So I went to see a neurologist and I went and had an MRI,
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The GP put me on migraine tablets, didn't work,
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and the consensus was, it's not a migraine, it's a headache.
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So what is the difference then?
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One is less intense than the other?
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Because I wasn't having to go and lie down.
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There was no aura.
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There was no floating things.
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It was impacting my life, but it wasn't impacting my life.
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Yeah, a little bit.
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You know, I wasn't stopping myself doing things.
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I was still going to school.
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And we also thought possibly it was because I was vegetarian, didn't like drinking a lot.
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When I was in my 20s, I was in quite a high pressure job, and I remember going and seeing
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another neurologist, and that neurologist said to me, do you exercise?
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That was his take.
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And I said, no, because I'm too busy working.
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Oh, well, you know, you should bring some exercise into your life.
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There's nothing wrong with you.
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That's what will do it.
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But probably I felt better all around.
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So can you describe a day when you have a headache, like you wake up, you were waking
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Would they differ?
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Would they always be in the same location?
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Usually in the same location, often around my eyes, right to left.
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And then when I was, I remember, because I can remember the places I was working at,
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one magazine, I had a girlfriend who would always say to me, I can tell you've got a
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headache because your eyes kind of go like that.
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Like, did she have migraines herself?
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No, she just looked at me and she'd go, you've got a headache, haven't you?
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I'd be like, yeah.
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So actually, in my head, when you talk about it, I remember you, no, I went to see a neurologist
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over here as well because, so I realized as I think about it, this has been escalating.
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So in my 20s, late 20s, I went to see somebody, then I went to see a nutritionist who said
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honestly, all you've got to do is drink water.
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So I had all these different ideas.
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I'm not, I'm a vegetarian, but I'm not a clever vegetarian.
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I'm not eating all the pulses and beans.
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I just don't like meat and fish and, you know, I should be drinking more water. I should
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be exercising, which is fair enough.
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You know, that's, that's usually a good call, exercise more, drink more water, but still nothing
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Nothing was cracking it.
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And then how, would it be every day or would it be?
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I'd say four or five days out of the week, but again, yeah, but it's not the kind of,
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it wasn't debilitating.
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I wasn't on the floor, you know, when I came to see you, it was debilitating.
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I was in bed for a week, vomiting, not able to move because I had what they called vestibular
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So then I had the aura
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up until then, about two years ago, I started getting vestibular migraines.
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Let's stay a little bit backwards.
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So like you're, wow, you're like, as a child, like you have headaches and there's sort of
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no explanation for it, but sort of, yeah, it's your fault.
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You know, that's what you get.
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Some people get headaches.
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Some people have blue eyes.
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But were you satisfied with that answer?
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Yeah. You have to be.
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If you can't, if, um, you know, you can take some pills and that'll probably help.
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If I take Nurofen, I'll be okay,
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So in the end, it's not the end of the world.
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It's not great. You're having to take them.
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And, you know, I was very aware that you shouldn't have them on an empty tummy and that kind
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of thing, you know.
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As you grew up, were you drinking a lot or were you having quite a healthy lifestyle
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I said, you know, maybe early twenties, I did some drinking, but not crazy.
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I've never smoked.
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And now I, you know, and then I went off drink.
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I don't, I don't really drink much.
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Yeah. I count the times I drink.
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you know, it's not debilitating, but you've also not pushed the envelope,
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So you had something lingering, but it never escalated also because you were good to yourself
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Maybe 10 years ago, I started really working out crazy.
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And I really got into boxing after it.
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And I really loved it.
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I would have not picked that up.
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I used to punch my trainer and then say, sorry.
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I wasn't being natural.
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She wasn't hysterical.
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And then one day I had a coffee. I went to train. I came back and I thought I was having
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I had the most cracking headache I've ever had in my life.
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And I was on the floor saying to my husband, you've got to call the ambulance.
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I'm having a stroke.
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And I was saying, you know, can you see, am I raising my hands?
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You know, all the things you're going to do.
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He's like, yeah, you're fine.
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And he was busy Googling. And he said, it's because of the coffee and the exercise.
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Yeah. I understand your body
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from within, which for you would have been, uh,
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you know, a bad combination, but it's not an unusual combination for most people.
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and exercise. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. Yeah. It's not an unusual combination for most people. Yeah. Coffee and exercise. And then, but so I kind of realized, okay, if I don't look after myself when I'm exercising,
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something crazy is going to happen because that's like, that wasn't a headache.
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That was, uh, an intense situation. You know, it's really, I thought, Oh my, and I don't, I'm
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I've never been an ill person.
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You know, I see I had a headache, but I've never been sick.
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And so what happened to you then?
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So you're on the floor, he's Googling, and then,
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and then I went to the doctor,
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I said, listen, this has happened.
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I just want to double check that
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he said, no, no, it's classical.
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You know, you've exercised too much and then you've got a migraine.
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And I spoke to my brother and my brother said, Oh yeah, that's what I get when I, if I have
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chocolate before I work out really hard, one of my brothers works out very strongly.
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So, so there was that exercise one.
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And then when I got here and I had, I had some, maybe I had two cases of the exercise
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induced migraine where I realized, okay, I've got to be a bit cautious here.
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There's something going on more than a headache.
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And then I forgot about it. We
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moved over here to New Zealand.
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and then an intense period of stress for various reasons.
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And that suddenly brought on vestibular migraine, which was the most physical expression of
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a headache I've ever felt in my life.
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I didn't understand it was a headache at first.
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I thought, what's going on again?
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You know, I had the headache, but more impressive was dizziness.
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I couldn't move without feeling I was going to vomit.
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And if I did move, I would vomit.
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So if you were moving, you'd vomit?
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Not only was I stressed because of what was going on around me, but I was also physically
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I was sort of making it even worse because I was having to sit like this because if I
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knew if I moved, I'd be sick.
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And then I went to see the doctor.
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I remember going to the doctor and being sick in the car and I'm sick and I'm having a because,
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you know, it was just that constant feeling.
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And they did the something maneuver,
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now I've forgotten the name, you know, when you're twisted to try and fix it.
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And they did lots of hearing tests, again, more MRI.
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And I was sent to a neurologist and
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he said, classic case of vestibular migraine.
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Have you got migraine in your family?
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And he said, think again.
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Have you got migraine?
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Well, yeah, my brother gets it when he's, but only when he's worked out.
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And he said he had headaches.
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And then my dad, there was a couple of times when my dad said he had things floating.
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And you didn't think of yourself?
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I didn't think of it because I don't think of myself having a migraine. I think of having
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Oh, that's incredible.
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And so he puts that name on vestibular migraine so that he had a sense.
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And potentially something to do with menopause, maybe something to do with hormonal fluctuations,
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something to do with stress.
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And says, okay, so I would suggest you take amitriptyline, which is an old fashioned antidepressant,
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so this isn't because I think you're depressed. It's because it's been shown to work very
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well at stress relief.
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So I thought, yeah.
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And he said that it has the added benefit of allowing you to sleep. So you will sleep
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So I don't love taking medication.
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I feel like I've had enough of my neurofen and paracetamol doses over the years.
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So he's told me to take such and such amounts that my instinct was to do half and it worked
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But also I became very reliant.
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Oh my gosh, what if I don't take it? Something's going to happen.
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And I went back home to the UK and I remember thinking I've got to take lots of it just
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in case because if I'm stuck, I don't know, I imagine myself mid-flight suddenly having
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a tarn and being sick, it would just be a nightmare.
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So it made me more panicking in a way.
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So you had the stress-induced migraines, but migraines were also inducing stress.
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I feel like it was a bit of a cycle.
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And how long did you take that for or how long did that last?
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So I came off them with you,
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a year and a half.
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A year and a half?
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I remember you not liking to take them, which made me relieved because-
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No, I didn't. I don't love the idea of taking any kind of medication.
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There's always longer term consequences.
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So initially it may bring a relief longer term.
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It adds toxicity on your liver and inside of your large intestine, which in itself creates
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So I quite liked when you said, I'm taking it and I'm like, we're not going to remove
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you are going to decide to remove it when you are ready with your doctor.
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And that was a really good approach because I'm not kidding.
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I would have just probably dug my heels in if you said the other at that point, because
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even though I knew I didn't want to, I was feeling like this was keeping me safe.
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You need to stay safe.
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You need to feel like I've got this.
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I can afford a few hits because I've been so good for a while that I actually trust
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No, absolutely you can't.
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These are really substances with real effects and if they relieve you, like I probably told
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you your job is to manage your migraines.
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My job is to remove your migraines.
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But when you have it, the way you manage it, it's really yours.
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So you have now vestibular migraines.
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They've been diagnosed.
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You have the amitriptyline.
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And then, and then what happens?
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And then it's funny because it took two different people to tell me, I have to come to you.
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And eventually I thought, okay, I've got to try it.
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And then I would like to say you've cured me because I feel you have.
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But I also think what you've done is made me aware of myself, which is almost more important
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than someone else waving a magic wand over you.
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It's giving someone the power to understand what they do will have an impact and how to
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And I think the way I look at it legally, I am personally not allowed to use the term
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cure. I'm not allowed to use the
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term also given its genetic, you know, like I'm not changing your genes, but I think
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what I am doing is I'm teaching you how to use them.
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And I do think they're really useful because at the end of the day, I deep down in my brain,
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my heart, I really think that your brain has a much longer longevity now.
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I think all of these years is just a warning sign of, Hey, don't abuse, don't do coffee
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Please give me this.
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And then once you do, your brain says, Hey, we're good to go.
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We're good to age.
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And I look forward to aging together,
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but before it sends you these warning signals.
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So for me, it's the migraines, but it's also other stuff.
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I think the brain is trying to warn against.
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I think maybe as you get older and you realize, but I mean, it's a bit annoying if you're
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in your twenties and you've got a migraine, but as you get older, you do tend to realize
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that everything, well, perhaps you realize that everything is connected, you know, but
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I think maybe the most important thing that doing your program has taught me is to be
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aware of myself and stop as soon as I feel a headache coming on, not just go, Oh, let's
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It's just a headache.
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It's going to be fine.
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It's a bit of pain.
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And I remember even when we were doing that exit interview and so I always ask, you know,
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before getting on a call, especially on a zoom call with someone for an hour, which
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has, you know, blue light.
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So it's like, are you comfortable?
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And he said, well, I haven't had an infusion this morning.
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I'm like, well, then stop and have it.
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There's no point in me tiring you.
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It's just, it's those reminders, isn't it?
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And, uh, but if you can do that earlier rather than when you hit my age, even better, that
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would be quite nice to have gone, gone through life, but then, you know, sometimes things
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happen for a reason when they happen and that's life.
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Can you talk about some of your other symptoms or things that you're like, Oh, and that's
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I would have never connected this and that.
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When I get tense, my shoulders, like just sitting here talking to you. I know I'm behaving, I'm
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the best behaviorist,
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I'm trying to sit properly.
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So if I'm feeling that at home, which I, I'm now a bit more tuned in, I'm feeling that
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I'll roll around on the floor a bit,
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I've become very intuitive because it's just a nice way of approaching things.
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We're going to do that right after.
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You're going to miss that part.
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We're going to do that right after the. I like, I like it and it's part of, and I do daily meditation
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and I started that.
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I mean, I've done that for 30 years, but I've done it quite intensively in the last two
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Well, I just want to say a massive thank you.
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Thank you for all of these women who are in that journey, on that journey where things
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are not understood and it's what you are because you have blue eyes or I've heard all sorts
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of things because you're a woman, you have migraines because you're a woman and you just
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have to accept it and accept, accept, accept, medicate, medicate, medicate.
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I think we talk a lot about medication cocktails now, you know, where you take a couple on
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top of each other because all of that toxicity, which is going to give me long-term more migraines.
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And so we look at things very short term. And
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so thank you for these women.
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Anything that can help.
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But I also think what you've done is made me aware of myself, which is almost more important.
