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Disability Narratives

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Video clip: Susannah explains that the process of finding the right treatment can take a long time and involve a degree of trial and error.

I've been on preventative medication since, probably since I was in my early twenties. I'm limited in the preventative medication that I can take, because the one that's most effective for most people, isn't appropriate for people who also have asthma. Which is really unfortunate. I've had quite a few doctors say "Oh, it's such a shame you have asthma, because this drug would almost certainly work for you." And it's like, that's not really helping [laughing]. So there's like some anti-epileptics, and some anti-hypertensives, and it's like - you know - pick one from a variety of classes. So you end up - And most of them aren't - A lot of them aren't licensed for migraine. So increasingly some of them are, but a lot of them aren't. So you have to go through kind of a bit of a palaver to, because it's not, you know, it's not always in the, in the manuals to say - you know - how much you should have. So the doctors kind of have to look through research and things to really see how much they should be giving you.

And I’ve kind of - Over the last few years I've kind of gone through probably about eight or nine different drugs, trying out to see which ones would work. And a lot of them, they're not very nice drugs. They're kind of, they're - they have quite unpleasant side effects. So probably about half of the ones I tried just plain didn't work. And the other half either didn't work and had really unpleasant side effects, or maybe worked a bit or worked quite well but also had unpleasant side effects [laugh]. And it, it took a long time to find something that actually worked for me, and was safe for me to take long term. And was actually possible for me to take long term. So typically the side effects tend to be things like making you very drowsy. And obviously you can't work when you're completely - you know - knocked out. There's one drug that makes you lose a lot of weight. I don't have a lot of weight to lose [laugh]. So it's, it's a real balancing act.

It's a lot of - it's a lot of trial and error, and balancing. And each - and because, because of the type of drugs that they tend to be, you can't just - often you can't just start them like that, or stop them. You've got to - you know - taper them up over, you know, three or four weeks, and you'll be told "Oh well the effect won't kick in until like week eight, maybe, or week twelve." And so each time you start a new drug, it might be three months before you even know whether it's working. And that's a long time to not even know whether this is even going to work. And, and just be putting up with, with how things are.