A National Migraine Centre Heads Up Podcast transcript
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[00:00:00] Did you know that migraine is more prevalent than diabetes, epilepsy and asthma combined? It’s much more common than people think. Welcome to the Heads Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr Katy Munro [00:00:24] Hello and welcome to this episode of our Heads Up podcast. I’m Dr. Katy Munro and I’m with Dr Jessica Briscoe.
Dr Jessica Briscoe [00:00:32] Hi.
Dr Katy Munro [00:00:32] So today we’re going to be talking a bit more about preventing your migraine attacks. And there are lots of types of preventers, in particular medications, devices and some injection therapies. But today we’re going to concentrate on medication that can be used to stop those migraine attacks coming so frequently. So Jess, do you want to sort of say why do we use preventers?
Dr Jessica Briscoe [00:00:56] Yeah. So there are different reasons to use them but in essence, we’re trying to reduce the impact of migraine on your life. So we often use it if people are getting migraines too frequently or if they’re having very severe migraines and it’s to try and reduce that irritability of the brain. Let the threshold that can mean you’re more likely to have migraine raise up so that you’re less likely to have frequent severe attacks. So it can also be used to prevent you from developing something called medication overuse, which we’ll discuss in another episode later on. But it’s just trying to reduce that risk of having severe debilitating attacks.
Dr Katy Munro [00:01:31] Yes. So we use them really probably not often enough. I think a lot of people are taking a lot of acute medication when they would do better taking something on a daily basis. So I try and think about introducing them if the migraine are coming more frequently or if the acute treatment is stopping working so well, which sometimes happens. And the other time is if people have persistent aura symptoms that are going on and on or if, of course, they have side effects with the acute treatments.
Dr Jessica Briscoe [00:02:02] Yeah, I sometimes use them as well if people have- even if they’re not having migraine as frequently as is in the guidance actually to use them, if they’re having really severe ones that are laying them out. So even if they’re having one or two attacks a month, but ones that are stopping them from actually sort of living their normal lives, so particularly sort of hemiplegic migraine or severe aura, I might think about using a preventative in both those cases.
Dr Katy Munro [00:02:24] Yeah. Or vestibular migraine that has a huge impact on people, doesn’t it? Where they’re very dizzy during their attacks. So as a guide, I kind of count up the number of attacks that people are having and if they’re having more than about five or six attacks per month, that doesn’t necessarily mean days, an attack may go over two or three days. But that’s my kind of rule of thumb. Would you agree?
Dr Jessica Briscoe [00:02:48] Yeah, definitely. I mean, that’s again, why it’s really important to try and keep a diary or keep a track of it, because I think it’s very easy to forget how many attacks you’re getting or sort of sum them up. But if you can see how much of an impact it’s having on the month then you often can tell more if you need a preventative.
Dr Katy Munro [00:03:06] Yeah, the monthly diary is downloadable from our website. And if you get a diary filled out a month at a page, then it’s really quickly easy to count up and see how many attacks people are having and whether or not they are edging towards that boundary where we would start thinking about introducing preventer’s.
Dr Jessica Briscoe [00:03:26] Yeah. So what are the different preventers, Katy?
Dr Katy Munro [00:03:30] The thing that’s happened recently is that we’ve had a new injectable and specific migraine treatment, but the medications that we are using have all been previously used for other things first and found to help reduce migraine attacks. So those might be under the heading of beta blockers, anti-depressants, anticonvulsants, angiotensin base, that’s a new blood pressure treatment candesartan and serotonin antagonists. So there are all fancy names basically for drugs that are used in other conditions and we have kind of stolen them over to try them for migraine. The trouble is that they all have side effects.
Dr Jessica Briscoe [00:04:10] Yeah. And I mean, I think we tend to be aware that people with migraine can be more susceptible to side effects, they can be a bit more sensitive. But not everybody is going to get the side effects. We don’t know who will tolerate each type of medication before we start them. So it’s not a given that just because a medication has all these side effects that you will get them.
Dr Katy Munro [00:04:29] That’s true. I mean, people sometimes really panic when they read the long list of side effects. And I do say it’s not compulsory to get those. You can’t have a crystal ball and look at people and know which is their favourite thing or which will suit them best.
Dr Katy Munro [00:04:42] Absolutely. I mean, we tend to start with I mean, I don’t know which your favourite preventative is? Mine tends to be actually in the antidepressant family, not because I think it has an effect on people’s moods, which I know people get a bit nervous that people are secretly treating them for being depressed because obviously your migraine must be because you’re stressed or anxious, which we know isn’t always the case. But actually, the antidepressant I tend to use is amitriptyline or nortriptyline. Which at the doses we use, doesn’t tend to have much of an effect on your mood. When it was used as an antidepressant we’d use it at about 10 times the dose that we tend to prescribe it now for pain of a migraine. And the reason I quite like it is because it’s generally very well tolerated and the side effects can be quite helpful.
Dr Katy Munro [00:05:29] Yes, if people are not sleeping very well, it can be quite helpful. On the other hand, they can get daytime drowsiness so we often advise people to take it earlier in the evening, don’t we?
Dr Jessica Briscoe [00:05:40] Usually about two to four hours before bedtime. And generally speaking, with amitriptyline and nortriptyline persisting with it for at least two weeks, most of the side effects should go away in that time if you can get through those two weeks. Obviously, if the daytime tiredness is too much and you can’t get on with your normal job, that’s going to be a different story. The other side effects for that tend to be, I think the thing that most people complain about is weight gain.
Dr Katy Munro [00:06:06] Yeah, that can really be quite annoying for people if their appetite increases. But not everybody gets that. It suits some people really well, and works very well in some people. The other thing I think to say with all the medications that we’re going to talk about now is two mantras. One is start low and increase slow. And the other one is you need patience. You have to stay on that maximum tolerated dose for at least three months. So I’ve had several people lately say, well, I got up to this dose and I took it for three days and it didn’t really help. So I gave up. And it really needs you to hang on in there to be patient, which is frustrating a bit.
Dr Jessica Briscoe [00:06:44] And conversely, I’ve also had a lot of people say that they were started on a low dose of a preventative and it was never increased, it tends to be a beta blocker where they’ll be on 20 milligrams of propranolol for six months or so and nothing’s happened. It’s not been increased. And that’s not going to work either.
Dr Katy Munro [00:07:04] No, that’s true. It does need to be an effective dose. So it’s something to discuss with your doctor or with us here at the centre about what is the way to start those and increase them. And nortriptyline is sort of in the same family as amitriptyline and sometimes nortriptyline has fewer side effects in some people, but it’s a little bit more of an expensive drug so often we try amitriptyline first.
Dr Jessica Briscoe [00:07:28] Yeah. So there are other sort of anti-depressants, but I tend to reserve those for people who actually have quite marked anxiety or depression as well. So sometimes we do try to co-treat different conditions, don’t we, with the preventatives? And that’s how you can sometimes choose which ones to use.
Dr Katy Munro [00:07:45] Yeah. So if somebody has got high blood pressure and migraine, then it makes sense to use something that can help with both. So beta blockers or candesartan are both types of drugs that can be quite helpful for blood pressure. On the other hand, if you’ve got very low blood pressure and you go on a high dose of a blood pressure treatment, that can give you side effects quite easily. So I think it’s really important to discuss with the doctor and think about all the other things that are going on in your life and in your body, before you choose the one that you’re going to try next.
Dr Jessica Briscoe [00:08:15] Absolutely. I think the other one that often has the best evidence actually tends to be one of the anticonvulsants, topiramate. That was a bit of a Marmite medication, I think. So it actually works very well if it’s tolerated and there are lots of people who don’t get any side effects and go on it, stay on it and are very successful on it. Other people seem to get all of the side effects on a really low dose. Main ones people think about are the effects on the brain, so it can slow down brain function and people can find it very difficult to concentrate or think. They can have changes in mood as well so people can feel quite depressed or anxious. Numbness and tingling and then the one that people tend to quite like is weight loss as well with that one.
Dr Katy Munro [00:08:59] Yeah, that can be helpful. Or I have seen some people who’ve started off on topiramate and lost a huge amount of weight and got rather worryingly thin. So it’s very much an individual decision. I’ve also come across some teenagers about to do their GCSEs who’ve been started on topiramate because it is in the guidelines that we can use this one in children. But if you are about to do your exams and you have a medication that gives you a bit of brain fog, worse than the migraine, it’s not very helpful.
Dr Jessica Briscoe [00:09:30] Absolutely.
Dr Katy Munro [00:09:31] So care needs to be taken in those situations. What about pizotifen? That’s the one that’s been around for years hasn’t it.
Dr Jessica Briscoe [00:09:40] Well interestingly I used to think that pizotifen was only useful in children, because it seems to work very well in children and adolescents and I wondered if that’s actually because I never tried it in adults. I’ve been using it more and more frequently recently. If it’s tolerated, so again, weight gain and drowsiness tend to be the main side effect. If people tolerate it, because you can use higher doses in adults than you can use in children, it can be useful. But again, it’s that sort of old adage, go low, go slow, try and persist if you can, and there is no one size fits all policy with migraine, as I say, every couple of weeks, I think.
Dr Katy Munro [00:10:18] Yes, I think we say the same things quite frequently. There’s an interesting one called flunarizine, which is widely used on the continent, but it’s not licenced here in the UK. So it’s got quite good evidence, well tolerated, but it’s quite difficult to get hold of in the UK, although I do think that GPs can prescribe it.
Dr Jessica Briscoe [00:10:38] Yeah, I mean, I’ve definitely suggested it and I’ve had patients who’ve been on it. Some have got on, as with all of them, some have got on well with it and some haven’t. The thing with flunarizine is there’s only two doses of it, really. So you can figure out quite quickly whether or not it’s going to work relative to the others where you have to build up the doses. And I think the main thing people have to be worried about is something called extrapyramidal side effect. So you can- some people can develop Parkinson’s type effects on it. Not very common at all. But as with everything, you have to look out for that. But generally, it seems to have been well tolerated when I’ve used it.
Dr Katy Munro [00:11:15] The problem is, if we are importing things which are not licenced in this country, then they can prove to be really quite expensive and so it’s just tricky to get hold of. Now, one of the ones we used to use, which has a really quite gone out of favour now, is sodium valproate. And that’s because of concerns about women taking it who may inadvertently get pregnant. And this occurs with topiramate as well, that it’s really not safe to be taken in pregnancy. So that’s one that we would very rarely use now, I think Jess, wouldn’t we?
Dr Jessica Briscoe [00:11:49] Yeah, I don’t think I’ve prescribed sodium valproate for quite some time, particularly because also it does affect the way that the pill works as well, same with topiramate at high doses. So there’s a few things that you have to be, as you said, looking at what other medications people are on, their individual circumstances as well. And then there are two that we used to use, a fair amount called gabapentin, pregabalin, which are also antiepileptic medications. Now, we don’t use them very much anymore. And generally people I’ve seen who’ve tried them didn’t have much success with them. And that’s because actually they’ve been found that there’s no evidence for their use in migraine and we should not be suggesting them for migraine prevention anymore. I think the other thing we need to talk about is stopping criteria.
Dr Katy Munro [00:12:35] Yes. So often we see people who’ve stopped having migraine but carried on taking their migraine preventative medications for years and years. So once their brain has settled down and the migraines are under control, we recommend staying on that dose for about, what, 6 to 12 months?
Dr Jessica Briscoe [00:12:53] Yeah.
Dr Katy Munro [00:12:54] And then trying to gently wean down and come off them. So I had a friend who had been on some migraine prevention medication for 15 years and had no migraines. So she just had never discussed with her doctor whether she still need to be taking it or not. She came off it and she was fine.
Dr Jessica Briscoe [00:13:11] Yeah. I mean, the thought process is that it should have reduced the excitability or irritability of the brain, and that persists beyond the need to take the tablets. So that effect should carry on. There’s not necessarily a danger to taking the medications for longer, but do you really want to take a medication that you don’t need for the entire time? And should your migraine attacks become more frequent or severe in the future, you want the option of going back on that medication if possible?
Dr Katy Munro [00:13:38] Yes, that’s true, because if it’s worked before, if your migraines recur, then it will probably be useful again. So, yeah, I think we need to talk about the plan for stopping right at the beginning when we’re starting things so that people aren’t sort of left on repeat prescriptions that go on and on for ages.
Dr Jessica Briscoe [00:13:57] Perfect. So I think I mean, we’ve obviously talked a lot about the medications today and we’re planning to talk about other types of preventatives, including the injections, CGRP medications, Botox, nerve blocks and devices.
Dr Katy Munro [00:14:11] And the other thing which people sometimes ask us about is HRT and the pill and what kind of pills can help to reduce migraines. So that’s really a topic for a much longer future episode. I think because there’s a lot to say about that. Hopefully that’s summarised a bit about prevention with medication and we will speak a bit more about these topics next time.
Dr Jessica Briscoe [00:14:36] We hope you’re enjoying today’s podcast and you’re getting lots of useful information and learning lots about how to manage and prevent your migraines. If you’d like to continue listening to our podcast, we’d really appreciate some donations from you as we are a charity and we need these to keep going. If you’d like to donate to us, please visit our Virgin Money Web page, which is available via the blurb. And now, Swati’s going to speak to someone about their experience.
Swati [00:15:07] Hi, Karen, thank you for joining us on our podcast today. In terms of your migraine and what kind of medications have you tried?
Karen [00:15:13] Yes, I’ve had propranolol, amitriptyline, maxalt.
Swati [00:15:18] So is there any particular medication that works for you now?
Karen [00:15:22] Now, this is one that I’m taking, but nothing before has worked.
Swati [00:15:26] So that would be topiramate?
Karen [00:15:27] Yes.
Swati [00:15:28] OK, and what sort of dosage are you on for topiramate?
Karen [00:15:29] Dr Briscoe did put me on up to 100 milligrams, but I’ve found when I got up to the 100 milligrams a day, I was getting a few side effects.
Swati [00:15:41] OK, what sort of side effects?
Karen [00:15:43] I couldn’t eat. It really suppressed my appetite. So I lost weight, which wasn’t a bad thing. I needed to lose a bit of weight, that wasn’t a bad thing, but I couldn’t eat. I just really couldn’t eat anything. My appetite was really squashed. I wasn’t sleeping and I felt a bit depressed. Finding that I wasn’t very motivated, didn’t want to do anything, didn’t want to go anywhere. So I took it upon myself to cut back and I cut it back to 50, so I was taking 25 in the morning and 25 at night and that was fine.
Swati [00:16:17] So before starting on topiramate, how many migraine days would you typically have in a month?
Karen [00:16:23] Well, over the years, I could have two, three, four a week. I’d had eight months of everyday, till I came to see Dr Briscoe in January.
Swati [00:16:34] So you actually had been suffering from chronic migraine?
Karen [00:16:38] Yes, I started on the 28th July last year. I know because it was my husband’s birthday and I had it until I came in January and saw Dr Briscoe.
Swati [00:16:49] So how much has it reduced in terms of the frequency of migraine?
Karen [00:16:53] I haven’t had one.
Swati [00:16:54] You’ve not had a migraine at all?
Karen [00:16:56] No.
Swati [00:16:56] Wow! That’s really, really good.
Karen [00:17:01] I’ve had a couple of headaches. What I’d call headaches.
Swati [00:17:04] How would you differentiate between a headache and a migraine?
Karen [00:17:06] Just sort of fuzzy head, you know, when think I’ve got a bit of a headache. But not when you think, oh my God, I can’t take the pain and you feel sick and you feel horrible. Not like that.
Swati [00:17:18] In terms of side effects that you mentioned, have those gone off by reducing the dose and doing it like that?
Karen [00:17:24] Yeah, I still get some nights when I don’t sleep very well and my appetite is not what it was. But I don’t mind that.
Swati [00:17:32] Because, you’re not getting the migraines.
Karen [00:17:34] Yeah, but I am eating now. I am eating. Whereas when I was on the 100 milligrams I just couldn’t eat anything. I didn’t fancy food at all. It really suppressed my appetite.
Swati [00:17:49] Thank you so much for joining us today.
Karen [00:17:52] Thank you.
Charlotte [00:17:55] So that was Karen sharing her experiences with topiramate. That was really interesting, Swati, to hear how preventative medication really has worked for her.
Swati [00:18:03] Yes and sounds more like a miracle.
Charlotte [00:18:05] I know. It really does.
Swati [00:18:07] We recently did a poll on our social media about preventatives and we asked migraineurs if they’ve tried preventatives and almost 83 percent said yes. We had some really fascinating comments, didn’t we?
Charlotte [00:18:19] Yeah, we really did. We thought we’d go through some with you all so you can see how preventatives do work and don’t work in some cases. So I think that we had one from Kimberly. She said that, yes, amytriptyline has hugely helped her vestibular migraines, but she said I still get them, but not as frequent as before I started the medication three years ago. So she’s been on it for a long time, but obviously it has helped in her case.
Swati [00:18:43] Then Tim sort of said that he’s found it helpful, having bad sleep definitely increases my migraine frequencies so it seems like amitriptyline helps him sleep.
Charlotte [00:18:52] Yeah, and I guess that makes sense then, because you have a better sleep, then you’re much more likely to get less migraines so that’s a good. And we had Tracy, she said that it worked absolutely brilliant for her in the 30s for about 70 years, it changed her life, then stopped working and ended up worse than before, so came off it. And now I’ve got chronic migraine been like it for around eight years so tried it again, going on amytriptyline, but it doesn’t work. Still on it now because it helps me sleep.
Swati [00:19:18] It’s really interesting. Yeah, I remember the doctors actually mentioned this thing that once you weaned off it, you can actually stop taking the medication. You don’t have to just continue taking it. Possibly if you weaned off the medication, you stop it. And when you start getting your migraines again later in life, you can sort of start the medication again if it’s worked for you and then it might work.
Charlotte [00:19:39] Rather than staying on it forever and, you know, then it stops working.
Swati [00:19:43] The effect sort of stops, isn’t it? Then we had Alisha, who said, no, it’s not worked for her. I took it in varying doses over many months and I don’t believe it made any difference currently taking Candesartan 60 milligrams per night, not got rid of them but the closest thing to making the difference so far. It’s interesting how different preventatives sort of work for different people. It’s such a personal thing with migraine always, isn’t it?
Charlotte [00:20:09] And that’s why you’ve got to try everything, don’t you? So you don’t get sort of put off if one thing doesn’t work, you’ve got to keep going through the list.
Swati [00:20:15] Yeah, absolutely.
Charlotte [00:20:16] So we also had Catherine, she said it makes me sleep, my worst migraine trigger is lack of sleep, so helps in the long run, put weight on and have a dry mouth.
Swati [00:20:25] So that’s something we’ve kind of seen all through the comments haven’t we? Sleep and the major side effects probably putting on weight.
Charlotte [00:20:33] And it’s kind of weighing out is this good enough- helping the migraines well enough so you don’t mind the side effects or are the side effects too bad that you actually just can’t take it?
Swati [00:20:42] But I can tell you putting on weight kind of side effect is kind of off putting, isn’t it?
Charlotte [00:20:46] But then I guess if you’re in constant pain, maybe a bit of weight, you know?
Swati [00:20:52] That’s true. And we did have some comments on Twitter as well. So we had someone saying yes, but eventually it stopped being effective. I now take verapamil and topamax, which have worked wonders. Again, different preventers working for different people.
Charlotte [00:21:07] Yeah, we had Rosie on Twitter. She said, I tried but didn’t get on with them at all. Constant dry mouth was unpleasant and I missed waking up feeling alert. They made me drowsy in the mornings, not enough positive impact on migraine frequency or intensity to make it worthwhile. Exactly what you’re talking about with the side effects isn’t it?
Swati [00:21:24] I think it’s always worth sort of once you start on a preventer, it’s worth going back to your doctor after three months time, speaking to them about it if you are having any side effects, telling them exactly what it is, because there’s so much out there that you can try within the preventers. And it’s always sort of worth having the discussion with either your GP or a headache specialist. So please, if you do feel there any side effects, don’t stop them yourself. Go and speak to your GP, speak to a specialist and see because they can give you better alternatives and they can help you sort of wean off it as well. And the last one I think I’m going to talk about is Lou, who said on Twitter that she did find I’m amitriptyline helpful. She said I did, but I have come off it now. I’ve had such a positive lifestyle change that I have weaned off it. It was the only thing that made even attempting to finish my nursing degree ok, I couldn’t have got as far as I did without it, I have graduated. So it’s really, really helped her.
Charlotte [00:22:16] That’s really nice to hear. So, yes. Well, congratulations. You have graduated. That’s brilliant. And that if something like that does help, then it’s definitely worth trying, I think. Very interesting. Mixed reviews, very mixed reviews.
Swati [00:22:29] Like all migraine medications.
Charlotte [00:22:32] You’ve got to try it and then see how it goes really. Thanks.
Swati [00:22:36] Thanks.
Dr Jessica Briscoe [00:22:40] Thank you for listening to our podcast about preventative medications. On our next podcast, we’re going to be talking about how to treat your migraines with acute medications and how to prevent and look out for medication overuse headache.
[00:22:55] You’ve been listening to the heads up podcast, if you want more information or have any comments email us on info@NationalMigraineCentre.org.uk. Till next time.
This transcript is based on a past episode of the Heads Up podcast and reflects information available at the time of broadcast – some facts may have changed or new treatments become available since.
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