A National Migraine Centre Heads Up Podcast transcript
[00:00:06] Welcome to the Heads Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr Jessica Briscoe [00:00:20] Hello, welcome to our special festive edition of the Heads Up podcast. I’m Dr. Jessica Briscoe and I’m here with Dr. Katy Munro.
Dr Katy Munro [00:00:30] Oh, yes.
Dr Jessica Briscoe [00:00:30] We’re in a slightly festive mood today.
Dr Katy Munro [00:00:32] We are actually, yes.
Dr Jessica Briscoe [00:00:34] So we’re actually starting off our special edition talking about some of the myths and questions that you have sent in to us via our social media pages. I’ll let you start with the first one, Katy.
Dr Katy Munro [00:00:45] Well, we asked about what myths you’d come across and there were loads of them. So we just wanted to kind of highlight a few of them that we found quite entertaining.
Dr Jessica Briscoe [00:00:57] And interesting.
Dr Katy Munro [00:00:59] And interesting. Isabella was told that the cause of her migraine was that she had very, very long hair and that she should have it cut. That isn’t a recognised treatment, as far as I’m aware, Jessica.
Dr Jessica Briscoe [00:01:11] No, I’ve never heard of that before. I mean, I’ve heard of people having ponytail headaches. So the tight ponytail. It’s sort of a mechanical-.
Dr Katy Munro [00:01:22] Pulling on the scalp a bit.
Dr Jessica Briscoe [00:01:24] Yeah, can actually make migraines worse. I’ve never heard of long hair being a trigger. I mean, I have quite long hair.
Dr Katy Munro [00:01:29] That’s true. And also, she pointed out her father suffered with migraine, but he always had short hair. So moving swiftly on, Marc told us that he had been recommended to use a special bubble bath and that was meant to help him. But again, not really sure that’s true.
Dr Jessica Briscoe [00:01:46] No, no. We had a lot, actually, about the fact that people were told that they’d grow out of it. So Debbie said that she was told she’d grow out of it. She’s had them since she was 10. She’s 54 now. Maybe she’ll stop having them when she’s 90?
Dr Katy Munro [00:02:02] Yeah. The trouble is with this theory, about growing out of it, is that you don’t grow out of your genetic background. And we know that migraines are a hereditary neurological condition. You have the genes and you never get rid of them. But your likelihood is that your migraine will improve as you get older. But unfortunately, that isn’t something we can guarantee.
Dr Jessica Briscoe [00:02:25] No, and actually, interestingly, someone said that they thought it was quite interesting that some people didn’t seem to know that migraine was hereditary.
Dr Katy Munro [00:02:31] Yes, that’s true. I thought everybody knew it was hereditary now.
Dr Jessica Briscoe [00:02:34] So, I mean, that’s quite an important fact as opposed to a myth, so I’m glad that you pointed that out. There was a really interesting one about putting your hands and feet- no just feet in a sink of hot water with a cold- something cold on your head over the back of your neck, the back of your neck or head. That was from Jasmine.
Dr Katy Munro [00:02:54] Oh, yeah. And Erika had been told that if she sat on the draining board with her feet and hands in icy water, then that would cure the migraine. So we are hearing a lot of things, I think it sort of illustrates really how people would try almost anything.
Dr Jessica Briscoe [00:03:10] Yeah. And I guess I know- I can hear where that’s come from. It’s the biofeedback thing. I mean, people use sort of ice, a lot of ice packs or heat pads as well. But it’s not going to cure your migraine, is it?
Dr Katy Munro [00:03:24] No, and you certainly don’t need to sit on the draining board. That just sounds a little bit more uncomfortable. But, yes, I agree with you. Ice can be really helpful because in some people, ice just seems to block the pain pathways. But funnily enough, other people prefer heat pads. So it just is an individual thing in a lot of cases.
Dr Jessica Briscoe [00:03:43] There are a lot of food related ones as well. So someone was told that almonds would cure their migraines.
Dr Katy Munro [00:03:50] Yeah, and a lot of people have been discussing whether food or caffeine is a trigger. And there’s some evidence that actually the cravings that people get for foods and then they get a migraine is a prodromal thing. I think we discussed that earlier in the series, didn’t we, Jess. We’re not really aware of any definite evidence that specific foods are triggers. But when you talk to people, individuals can be quite convinced.
Dr Jessica Briscoe [00:04:20] Yeah, absolutely. Caffeine has a funny- there’s a funny relationship with caffeine and migraine, isn’t there? Because some people are absolutely fine with caffeine. But in some people, if they have it too much over an extended period of time, it can cause a sort of caffeine overuse type picture. So I think the key- but I mean, we also use it to treat migraines don’t we? A lot of people use it.
Dr Katy Munro [00:04:41] It can be helpful.
Dr Jessica Briscoe [00:04:42] Yeah. People can find that their pain goes away. I mean, it’s this age old, there is no one size fits all with migraine, everyone’s individual, somebody might find that they’re quite sensitive to caffeine. You’ll only know by cutting it out. So, for some people, it can be a trigger. For some people it’s not.
Dr Katy Munro [00:04:58] Yeah, the other thing is about hydration, so I don’t know about you, but people always saying to me, oh, you just need to drink more water, drink more water. But actually I’ve tried drinking loads and loads of water and so had Georgia and she drinks only water and she gets a bit fed up with people saying, oh, you’re dehydrated. I think the message from that is that it isn’t- it’s more complicated than just one factor, isn’t it? We know that there’s a number of different things that contribute to irritating the brain, and it’s usually a change in routine, a change in the internal or the external environment that adds together and irritates the brain into a migraine attack.
Dr Jessica Briscoe [00:05:38] I think the other thing that people found quite frustrating and Azaria pointed this out, the myth that migraine is just a headache.
Dr Katy Munro [00:05:46] Oh, that’s a common one, isn’t it. Such a myth.
Dr Jessica Briscoe [00:05:50] Really irritating for people. Most people find that the headache is just one of the many symptoms that they get for migraine. And it’s often not the most debilitating. And it’s really quite irritating to be told, oh, it’s just a headache, you know, take some tablets and you’ll feel better.
Dr Katy Munro [00:06:07] Yes. So there are also a number of people that have been told, oh, do this or do that and it will cure you. And we never promise that to people. But improving migraine is definitely something that we’re good at here and something that we can help people with if they come along to the clinic.
Dr Jessica Briscoe [00:06:26] Absolutely. So I think if you’d like to hear more of our podcasts, then please visit our donation page, because we’re really trying to make sure we get more of these tips out to people trying to actually quash a lot of these myths and get good quality information out there to people.
Dr Katy Munro [00:06:46] Yes. So any donation, large or small, would be great. Or if in the next year, you know that your company is sponsoring a charity, please put us forward that would be brilliant. And our Virgin Giving Page for Heads Up podcast is the way that you can easily make a donation, large or small.
Dr Jessica Briscoe [00:07:06] Yeah, that’s in our blurb, if you need to find out more.
Dr Katy Munro [00:07:10] So next, we had a chat with our colleague Sara Miller to look at some of the questions people have been sending in over the course of recording this series. And so have a listen to that next.
Dr Jessica Briscoe [00:07:24] So now Katy and I are joined by our colleague, Dr. Sara Miller, who’s wearing a lovely festive Christmas jumper, and I have to say I particularly like the lights.
Dr Sara Miller [00:07:32] Thank you.
Dr Katy Munro [00:07:33] We’re going to ask Sara some of the questions that you’ve been sending in on our Facebook page and Twitter and see if we can get her expertise to help us out with this. So the first one is about the use of drugs which are being used for other conditions which might potentially trigger migraines. So, Sara, what do you think about those. What drugs particularly can give you a risk of having more migraines?
Dr Sara Miller [00:07:55] So if you read the big list of side effects that comes with every drug, you would think that every drug can do it. But actually, it’s relatively uncommon. The main ones I can think about are there are some blood pressure drugs. Nifedipine is one of these that quite often can make migraineurs worse. Champix, which is a drug that is used to help people stop smoking, can quite often make migraines worse. And some of the hormone treatments for breast cancer I’ve seen some patients worsen with. But the issue is about how serious the condition they are treating is and whether the risk of stopping those drugs or being on a different drug outweighs the risk of having the headaches. So I think very much what I would counsel patients to do is they have to discuss that with the doctor prescribing those or with their GP before stopping it.
Dr Jessica Briscoe [00:08:46] I guess also it depends whether there are any alternatives. So I think, as you said, with blood pressure medications, I think most people, when they’re choosing medications for people, would avoid ones that are going to exacerbate any other conditions. But if there’s no other choice and someone has very high blood pressure, you’d rather that they had migraine than a stroke, for example?
Dr Sara Miller [00:09:05] Yes.
Dr Katy Munro [00:09:05] Yeah, I think it’s always worth pointing out to your doctor in a gentle way that you have migraines because often it’s slightly forgotten, it’s underestimated as something that can potentially have a significant impact. And doctors who are choosing medications need to know the whole scenario that they’re putting a new medication into.
Dr Sara Miller [00:09:24] The other thing I’d put in is that putting my good headache doctor hat on is medication overuse can result if you’re using painkillers for other pain conditions. So if you have a musculoskeletal problem or you end up with another chronic pain condition and you are prescribed codeine to treat that, if you are using that regularly, even though it’s not for your headaches, you can get medication overuse and wind up with your headaches for that. So another reason to, again, be warning people of your migraine and being aware of that, because quite often doctors aren’t aware that that happens.
Dr Katy Munro [00:09:58] Because it’s not just codeine for your headaches. It could be codeine for your broken leg or your post op. And we’ve talked about that a bit in another episode. So if you want to hear a bit more about medication overuse, just check that one out.
Dr Jessica Briscoe [00:10:11] So, yes, I think we’ll move on to another question. Actually, we were asked, I think, quite a useful question. Do you think that there is a preventative out there for everyone?
Dr Sara Miller [00:10:20] Short and sweet? No, I don’t. If there was, then I’d be out of a job. And I always say, I’d quite like to be out of a job. I’d probably be working in a florists, I’d like to think or a cake shop. One of the two. Florist’s probably safer for me. But there isn’t a drug that’s out there for everybody. There’s no way that when I’ve got a patient sat in front of me, I can decide just by looking at somebody what drug is going to work for them or what side effects they’re going to get. It’s very much a suck it and see issue, it’s trial and error. And although that’s frustrating, if we had any better choice, if we had an ideal choice for everybody, if we had a test, we could do, a blood test that showed us which drug you were going to use. We’d be using it and we just don’t have it. So I think my quote is I say about 30 percent but you’re saying about 25 percent in your figures for things?
Dr Jessica Briscoe [00:11:07] I usually say one in four.
Dr Sara Miller [00:11:07] We’ll say 25-30 percent of patients are going to respond to any one oral drug that’s out there. There’s not a lot of evidence out there that if you failed one drug or two drugs, you’re going to fail everything else. But then the studies haven’t been done. And I think there is work going on to try and see that. But I think we just have to choose the best preventative for the patient that is sat in front of us.
Dr Katy Munro [00:11:27] Yes. And taking into consideration what we were mentioning earlier about their other illnesses, their other medications and also what they’re planning to do in their life, what the next- what the needs are, whether they’re working, whether they’re looking after kids or what they’re trying to do.
Dr Sara Miller [00:11:44] And I think the answer is there are some patients that don’t want a preventative as well. So quite often I’ll have somebody that just says, look, actually I’m not in a great place, but I want to have time off, I don’t want to take this. And, you know, I respect that. That’s somebody else’s head. They decide which route they want to go down with but sometimes there are people that would prefer not to be on any treatment. I think that’s a respectful decision.
Dr Katy Munro [00:12:05] We have to make the decision in conjunction with the patients don’t we? With the discussions about all the risks and benefits. So the next question is about CBD oil and Botox and NIS, which is a neurological, sort of, we’re not really sure. I think it’s some sort of system which is said to help all sorts of conditions.
Dr Sara Miller [00:12:29] I think they’re saying it’s a way of being able to identify the underlying cause of numerous medical problems. And the question really about these issues about CBD oil, Botox, these other kind of more holistic or kind of alternative methods? And if there is work and research into them and how people can access them. I think the first thing I’d say is that I am an evidence based practitioner. So the only treatments I’m going to recommend or discuss in detail with my patients are those that have a solid evidence base or as solid as it gets.
Dr Katy Munro [00:13:00] So Botox would come under that. We’re all happy to use Botox.
Dr Sara Miller [00:13:02] Yes, Botox is not an alternative treatment. Yes, it’s an injection rather than a tablet. But that doesn’t, in my mind, make that an alternative treatment. For me, alternative treatments are things that are not in the kind of first line or in the kind of evidence based kind of box.
Dr Katy Munro [00:13:19] Or haven’t had proper studies where people are trying them and some people are trying the sort of equivalent. So with tablets, that would be some people are on inactive medications and others are on active medications, but they don’t know who’s on which.
Dr Sara Miller [00:13:34] Yes. So what’s called a placebo controlled trial. Some patients will be on an active drug. Some people are on an inactive drug. They don’t know which is which. And that allows you to say, is there a clear difference between a drug and nothing? Because the placebo response is such that psychologically humans will have a positive benefit to any medication, even if it is not at a dose that is active and sugar pills can still have a positive response. People can get better by them.
Dr Jessica Briscoe [00:14:05] It’s quite high actually.
Dr Sara Miller [00:14:05] About 30 percent in migraine or in chronic pain of patients will respond if they’re on placebo. And similarly, you get the other way round. So patients on placebo who are on sugar tablets can complain about side effects.
Dr Katy Munro [00:14:15] Yes, it’s fascinating. Placebo effect and the nocebo affect, I don’t know if that’s how you pronounce it. But I think there’s been quite a lot of research on placebo itself recently. And I kind of feel if something’s placebo it’s doing no harm, then that’s one thing but people need to not be conned into thinking that something is active when actually it’s probably just relying on that placebo effect.
Dr Jessica Briscoe [00:14:40] Or something which is- the thing that upsets me is things that are- people feel that if something’s herbal it does no harm. And actually, there are lots of different herbal medications that are quite toxic.
Dr Sara Miller [00:14:51] Oh, no, I think we know in terms of there are some- it’s butterbur, isn’t it, that causes liver damage.
Dr Katy Munro [00:14:56] Yes.
Dr Sara Miller [00:14:56] There are some, for example, St. John’s Wort interferes with a lot of drugs. So it can be potentially dangerous if you’re want antiepileptic drugs, on antidepressant drugs. And also a lot of herbal medications, kind of traditional medications have huge doses of steroids in them. And that’s why people improve, because actually, if you monitor them for skin conditions or for headaches, massive dose of steroids, that you wouldn’t get over the counter in some things. So I think it’s just to do these things with an element of care. I have a saying to patients, it’s that there’s a pile I would have of my ‘it’s unlikely to work, but it’s not going to do any harm’ box. And I think as long as people, as you said, aren’t being sold something in a kind of snake oil, I keep saying, it’s a bit kind of like the Wild West. There’s a lot of people out there that will promise our patients the world. And when you’re desperate, no matter how crazy the idea you will take it. And quite often that comes with a big price tag and it comes with a very positive sell. So people are promising you a cure. You come and see us. We’re not promising you a cure. We’re saying there’s a 30 percent chance, 25 percent chance you’ll get better on our medication. If somebody else says, I’ve got an 80 percent chance you’re going to get cured by taking this or by doing this process, there’s no evidence to it, I can’t show you any studies to back it up, and it’s going to cost you a lot of money to do this. You know, that doesn’t sit comfortably with me, but I can understand why patients do that out of desperation to get it. I just have an issue that sometimes you can end up spending a lot of money.
Dr Katy Munro [00:16:09] Yeah, I think social media has a big role to play in this, don’t you? I mean, you can read on social media about people who’ve had amazing results from all sorts of things. CBD oil is one of them. And just because it’s on Facebook or on Instagram or on Twitter doesn’t necessarily mean A. that that thing works, or B. that even that person is genuine sufferer.
Dr Jessica Briscoe [00:16:30] Isn’t that also part of the reason that we did this podcast? Because we wanted to be able to provide good quality evidence based information? In a different way.
Dr Katy Munro [00:16:39] Yeah.
Dr Jessica Briscoe [00:16:39] I was going to say one thing about Botox, actually. It’s always interesting that people- I’ve had this question asked by a few people before where they sort of thought they were asking about a crazy alternative thing. Because Botox is known as an aesthetic treatment. It’s used for a lot of different medical conditions.
Dr Sara Miller [00:16:53] For neurology, we use it quite a lot. So it’s used for a lot of muscle spasms. So writer’s cramp, you can use it for. It’s used for dystonia and muscle cramp in the neck. It’s used for bladder problems. It’s used for stomach problems, neuropathic pain so some people with pain in their feet and their legs get it from that. So it’s used probably for more non aesthetic issues, plastic surgery, cosmetic issues than it is for the cosmetic issues. It’s just not known for that.
Dr Katy Munro [00:17:17] Yeah, but what bugs me is when people say, oh, I’ve had some Botox, I went to a cosmetic person, and they did my forehead and they said it would help my migraines and they’ve had a partial treatment.
Dr Jessica Briscoe [00:17:31] It makes you really cross.
Dr Sara Miller [00:17:32] And that is we why we have Botox is because people who were getting it for cosmetic reasons started to report their migraines are a bit better. But it’s important to understand that there is a set of evidence based programme of how we inject in terms of the doses, in terms of where we inject, which has been worked on and which has been found to be effective. Whereas if you just inject willy nilly, you’re potentially, again, paying money for something that isn’t going to work or is less likely to work. And when there’s an alternative out there, that doesn’t seem right. I’ve also seen a lot of patients who have been told they’ve had Botox for migraine and they haven’t had it injected properly.
Dr Katy Munro [00:18:06] Yes, I agree.
Dr Sara Miller [00:18:08] And I will be thinking- I’ve said oh, your Botox didn’t work. And it’s not until I make a comment and someone says, oh, I didn’t get 30 injections, I only got five or- and I went, what? Or they didn’t inject me here. They’ve no idea what the proper protocol is. And so I think it’s, you know, being kind of aware that there are people out there that aren’t injecting as per what we call the PRE-EMPT protocol, which is the study that proved that Botox was effective. There are people out there that aren’t doing that study. And so it’s worthwhile, again, if you’re paying for the Botox, or are finding someone. You do try and find somebody that’s seemingly knowledgeable about it, is able to chat about it.
Dr Katy Munro [00:18:42] And who knows all the options of other treatments and isn’t just promoting Botox. Should we talk about another question? So somebody asked us about probiotics. And I know there was a little study recently by a company that makes probiotics. So that’s interesting but I think we have to be cautious if it’s sponsored by the company that makes them.
Dr Sara Miller [00:19:02] It was a very small study. So I think it was less than about 20 patients.
Dr Katy Munro [00:19:07] I think it was about 50,
Dr Jessica Briscoe [00:19:10] I thought it was 35.
Dr Sara Miller [00:19:11] But it’s still small. It was carried out by the company that makes it. And as a physician, there is always an element of caution that if somebody is doing a study to look into their own product and it’s funded by that company, there is always an issue about how- oh what’s the word?
Dr Jessica Briscoe [00:19:24] Unbiased?
Dr Sara Miller [00:19:25] That’s the word. How fair, how unbiased that study is going to be. I’m not saying that, you know, the results aren’t valid, but it would be nice to have a much larger study carried out and for it to be over many centres, which aren’t associated with those people. Saying that, there appears to be a lot of general interest in the moment about probiotics, about gut health linking to brain health and the rest of the body. So I think it’s going to be a watch this space element.
Dr Katy Munro [00:19:50] I went on a course about depression. And one of the topics they were talking about was about probiotics. But speaking to their researchers, they were saying that they were probably more interested in prebiotics in foods which enhance the gut flora. So, yes, very fascinating topic. And I think a lot of research in lots of different areas going on.
Dr Jessica Briscoe [00:20:11] And that was interesting because it was more about not taking a supplement as such, but natural ways.
Dr Sara Miller [00:20:15] Changing your diet and getting things in. And I think it’s going to be a different way of looking at diet, not in that diet is being used as it is now in the kind of ketotic diet or kind of cutting out sugar, but actually putting things in that can aid your general health and the way your body works. But I think it’s definitely a work in progress at the moment.
Dr Jessica Briscoe [00:20:32] I’ve got a question about the use of infusions and how effective they are. So they were specifically asking about IV valproate and haloperidol for intractable attack intervention. I think the person who asked- well, they’ve asked a very specific question, but what are the options? Are there options for infusions to manage migraine?
Dr Sara Miller [00:20:49] So there are options for infusions. It depends on where you’re going to be using them. Much like the other things we’ve got about acute or preventative medications. You’re going to have infusions which have different roles in different places. So we have some infusions that we would use as a crisis management, but also potentially you could use on a regular basis. It’s a bit like nerve blocks. So one of those is a drip treatment, somethnig called DHE, which is dihydroergotamine. It’s an old fashioned migraine treatment and it’s given as a drip over three to five days in most places. It’s not a cure, but it can be something that can reduce the severity of migraine attacks while people are on the drip, but often for days to weeks after it. So again, a bit like nerve blocks. It’s not given very commonly. So it’s not something your GP can give, it is not going to be something that your local neurology department is going to give. It tends to be in specialist units only.
Dr Katy Munro [00:21:38] And we certainly wouldn’t be giving that here in the centre.
Dr Sara Miller [00:21:42] In the private sector it’s not issued. You have to be in hospital. It’s having to be done with cardiac monitoring, has to be done in units that are used to dealing with these things. Again, it’s not a cure. It tends to be used in people who are kind of- you’ve run out of other options.
Dr Jessica Briscoe [00:21:56] Are there side effects?
Dr Sara Miller [00:21:57] So the main side effects of it tend to be stomach cramps, diarrhoea and nausea and vomiting. So it needs to be given with a lot of anti sickness agents. And also it can’t be given in people who have heart disease because it causes the blood vessels to squeeze tight shut. So if you’ve already got heart disease, it can cause you to have angina. It can cause some people to have a shutting down of the blood vessels in their fingers and toes if they’re prone to it. And also because you need to have drips in, it’s not the nicest thing to be going into veins, so quite often you’ll get people that need lots and lots of cannulas put in, and if you’re having it regularly, you end up with some people having to have lines put in their neck, to you have it regularly. It’s there as a rescue. I use it in kind of NHS practise to sometimes get people who are having a very tricky detox to cover that, we’ll get some people who are going through quite a bad phase that that can be useful. But obviously, by the time you get somebody into hospital with a better will in the world, it’s difficult in the NHS to get somebody in an emergency, especially when it’s quite a difficult to get hold of treatment. But we do get people in to try and get them through bad phases of that. And that’s probably in this country is one of the most recognised IV infusion therapies.
Dr Katy Munro [00:22:59] What about intravenous magnesium?
Dr Jessica Briscoe [00:23:01] I was going to ask about that!
Dr Sara Miller [00:23:04] Okay, so it’s not used very much in the UK. It’s used more in the States. It should be given probably with cardiac monitoring to it. So again, that can be a difficult issue to do. It’s where I have seen people using it in the UK has been as a preventative. So being used every few weeks or what have you, I don’t know what their protocols are, but being used every few weeks as a preventative drug. But I’ve not got any experience myself of using it. Again, from an evidence based point of view, there’s not a hell of a lot. It’s not using the NHS as an infusion treatment.
Dr Jessica Briscoe [00:23:37] No, no. I mean, because obviously I know a little bit I know about oral magnesium and I’ve done lots of reading on that. And I couldn’t see much about IV so whilst you’re here I thought we’d ask you.
Dr Sara Miller [00:23:45] No, I know there are some people who are giving it. I have colleagues that have used it and say they’ve got some patients that do very well from it. But evidence based, it’s difficult.
Dr Katy Munro [00:23:53] Not generally.
Dr Sara Miller [00:23:54] IV Valproate, again, in the UK is not very common thing. It has been used in the states. So valproate is sodium valproate or epilim. So again, it’s a drug that we would be used to using orally for some migraine treatments.
Dr Katy Munro [00:24:06] And using less frequently particularly in women.
Dr Sara Miller [00:24:08] Yes, in women, it’s not a great drug to be on, but there is some limited evidence that it can be used to treat status migrainosus. So patients who are having a prolonged severe migraine attack. But again, in the UK, it’s not used very much. And so you’re not going to find many places that can give it or have a protocol for giving it because again, it’s not been studied enough. Haloperidol has no evidence base, as far as I know, to be used as an acute treatment. Haloperidol is an antipsychotic drug, a very sedative antipsychotic drug. I can imagine that some places may use it to calm people when they have bad headaches. There are some other similar drugs, slightly newer than that, that we do use if people are in hospital and are going through detox’s in a very bad way. There are certain antipsychotic drugs which also have anti sickness issues and are quite sedative that we use to help people come off opioids with things. But again, under a very specialist and very small number of people who are going to be doing it. Steroids. So in the States, there are some kind of acute physicians and headache specialists that would recommend IV steroids or IM, intramuscular injections of steroids, which can help. Again, we don’t tend to do it in this country. There are a lot of problems with using IV steroids. Erm, it’s not just an issue that you give them and people get better and there are problems in terms of kind of blood pressure, diabetes, bone health, sleep, weight, mental health of having a lot of these issues. So they’re not- they’re not without risk.
Dr Katy Munro [00:25:28] They’re not a panacea.
Dr Sara Miller [00:25:29] In terms of if somebody has an intractable headache that’s been going on for days or weeks, the current options that we would have to offer are to say that it’s worth still trying to treat it as you treat any other migraine attack. So trying to control vomiting, trying to get fluids into people. If they haven’t taken triptans, still taking them. If they are vomiting to think about injections of triptans or again, about getting injections of anti inflammatory drugs from GP’s, that can help. If people are bad and are vomiting, then hospital admissions for IV fluids and things like that may be an option. It’s not great, but at some point, potentially controlling vomiting and getting fluids in can be enough to get people through. But there is unfortunately not a lot of evidence about these issues. If somebody has had an attack that they’re saying is going on for two or three months, I don’t think there’s a single migraine attack. I think that’s going to be a flare up in general. And I would be treating that as I would treat episodic or chronic migraine flare ups by saying, do we need to do a nerve block for that kind of issue? Do we need to be changing painkillers around? Preventative needs to be started?
Dr Jessica Briscoe [00:26:26] Yeah.
Dr Sara Miller [00:26:26] The other option that may become possible in the future. Currently while not be well explored is the use of CGRP antagonists. So these new monthly injection treatments as a bridging treatment. So currently we would use nerve blocks as something that would work quickly, potentially get people out of a sticky situation, but not last very long. But the CGRP drugs seem to have evidence that in a lot of people, if they’re going to work, they will work well within the first few weeks. So there is an option that if you’ve got somebody who is having a tricky situation with their migraine or has flare ups that tend to last for a few months at a time, not long enough to get an oral preventative in but too long for a nerve block, then it may well be in the future we could use these CGRP drugs because we use them, they’ll have a monthly injection, they may get better within the first few weeks and then you can continue that monthly for three months. Six months, get them out of that tricky situation and be able to stop it. It’s not being done, it’s not kind of on an issue of saying you’re going to see a lot of experience with at the moment, but it’s a potential use of those drugs, given the speed at which they act and the fact that they are still a preventative drug. So I think they may well have a role in the future as well.
Dr Katy Munro [00:27:41] So new things to watch out for.
Dr Jessica Briscoe [00:27:43] OK, talking about preventatives, we’ve touched on this a little bit already, but someone was saying that they wanted to know about NHS preventatives and they feel that from the comments that they’ve read on UK Migraine Facebook page that none of the NHS preventatives seem to work for anybody and wanted to know why they’re still prescribed?
Dr Sara Miller [00:27:59] NHS preventatives are the same as private preventatives.
Dr Jessica Briscoe [00:28:03] Completely.
Dr Sara Miller [00:28:03] So the drugs that we use are evidence based, they are the same drugs that are used in the NHS, in the private sector by GPs and pretty much across the world, the same drugs. It is not an issue that the NHS is getting them kind of inferior drugs from somewhere else or is providing inferior treatment. If anything, the NHS has to work with stricter guidelines as to what is going to work in terms of NICE guidance or the BASH, the British Association of Society of Headache guidance, which is probably more likely to make sure people are using drugs, most likely to work at doses most likely to work. And I think that’s the issue is it’s not the quality of the preventative, it’s the quality of the prescriber.
Dr Jessica Briscoe [00:28:46] Absolutely.
Dr Katy Munro [00:28:46] The advice that they’re giving.
Dr Jessica Briscoe [00:28:46] I see a lot of people- and we’ve talked about this before, about being put on the right preventative at an insufficient dose for the insufficient amount of time. Partly to do with I mean, now there are guidance- there’s guidance our there now for non headache specialists. But historically, there hasn’t always been.
Dr Sara Miller [00:29:01] I think there’s been a huge lack of education and training from neurologists, from headache specialists to GPs to non specialists. We are trying to get better on that. But yeah, hands up. We’ve not been great at doing it in the past. The other thing I think is there’s still a lot of myths and theory out there about migraine. So I had a patient today whose GP just every time she came back, said go and keep a food diary for another month. And so she’s not been eating loads of stuff ages because this is her treatment is to avoid these things. And when I say that’s nonsense, don’t worry about that. She said, oh, no but, you know, I’ve been reading in books that this is all on there.
Dr Katy Munro [00:29:35] Yes, There are lots of books about migraine and diet.
Dr Sara Miller [00:29:37] Lots of books about migraine and diet and triggers and things. And about mentioning preventatives, but not necessarily up to date theories on them. In general, it’s the right drug, but it’s the right dose. And what we tend to say, is the starting dose is not the therapeutic dose.
Dr Jessica Briscoe [00:29:51] Absolutely.
Dr Sara Miller [00:29:52] You start on a small dose. That dose should be worked up usually over six to eight weeks to get onto a treatment dose. That treatment dose continues for three months in the absence of medication overuse. And if it hasn’t worked after three months, something else is tried. If painkillers aren’t addressed. So somebody is using painkillers more than- I go for 10 days a month, some people may go for 12. But if you’re overusing painkillers, then that’s another reason why preventative drugs might not work. That’s not the drug itself. It’s the fact that you’re trying to fill a bath with the plug out. There’s something stopping that drug from working. So it’s about how the drugs are used, not the drug itself that I would say maybe is an issue.
Dr Katy Munro [00:30:30] They are still prescribed because actually they do work for lots of people. So that’s why it is just getting that advice right at the beginning as to how to increase the dose and how long to take it for. I think that’s why sometimes people are really struggling.
Dr Sara Miller [00:30:44] I think as we’ve moved- because I mentioned before there isn’t one drug that works for everybody. So it’s going to be a suck it and see issue, if your first drug doesn’t work. It doesn’t mean that nothing else will. It’s easy to become disheartened after you’ve taken two or three drugs, especially if they’ve not done been done properly. I see people that have waited six years to get to see a headache specialist and they come and all I say is you need to take a bigger dose of that drug.
Dr Jessica Briscoe [00:31:05] Yes.
Dr Katy Munro [00:31:06] Yeah, it can be frustrating for people.
Dr Sara Miller [00:31:09] But the issue is sometimes they come back after three months of being on a decent dose and things have got better and they’ll be delighted. I’m angry because I say that’s great you’re better but it’s taken six years for someone to give you the proper dose. But it’s quite often that people come to me and say, you know, none of these drugs work, I’ve given up on all of it. But it’s about trying to re-engage people, about trying- I’m very much one for saying that the patient should be in charge of what they’re taking. So it’s giving them the information about what dose they need to be on, how they get there, leave it up to them to do it. Because if you leave it to GPs- GPs are pressed. Medical doctors are pressed. So if we say, you know, this needs to go up, this is how it needs to be used. Patients are trying to get into their GP every week, two weeks to get a dose up. That’s not going to happen. So if you say to a patient, this is how you need to do it, here is your regime for going up, every week this is your plan for going up. They can be in charge of it. And if they’re in charge of their own health, it is far more likely they’re going to understand it. They’re going to be more optimistic about what they’re taking. They’re going to be more in charge of what they’re doing, making sensible decisions for things.
Dr Jessica Briscoe [00:32:10] Well, I think we’ve always, all the way through this, we’ve kind of- we have always been very much about empowering patients. It’s actually part of the reason why we’re doing the podcast is to make sure that you have the right information to be able to help your doctors in some cases.
Dr Katy Munro [00:32:22] So interesting question on the same lines is people are often concerned, if they are taking preventer’s for a long time, whether they’re going to cause any damage to the body. So long term preventatives, what do you think about the risk of them actually having damage to their body from these medications?
Dr Sara Miller [00:32:39] So the one thing I say is a lot of these drugs are used for other things that people can’t stop them for. So a lot of the drugs we use in terms of the anti epilepsy drugs, people can’t stop them.
Dr Katy Munro [00:32:48] And blood pressure.
Dr Sara Miller [00:32:48] And blood pressure ones, people are on them life long and there’s no evidence that they seem to be kind of worse off for it. But again, it’s a risk-benefit balance. Antidepressants, again, there are lots of people that have to be on them long term or lifelong. And it’s balancing out pros and cons. We were discussing earlier, there’s an issue about whether or not some of these antidepressant drugs may have a link to Alzheimer’s or dementia, but it’s really difficult to ascertain cause and effect with issues. So there’s a concern that people who are on drugs like amitriptyline are more likely to develop Alzheimer’s or dementia. But the issue is about with those patients, what were they put on the drug for? If they were taking the amitriptyline because they had mood disturbance, if they were taking because they had sleep problems, potentially, they were early signs of dementia. And therefore, it’s not the drug that’s potentially caused it, but the fact they had to- being on that drug is a marker that you’ve developed problems that can be associated with dementia. So it’s really hard to get cause and effect.
Dr Katy Munro [00:33:43] So we really don’t know, do we, with that? Because I think that’s one of the things that really frightens people, is they think they might be taking something that is going to lead them onto having dementia. And I think the answer is at the moment, we really don’t know.
Dr Jessica Briscoe [00:33:56] I think the other issue, as well, is this issue about long term preventatives, which I feel very strongly that doctors are terrible at- well we’re great at starting medication, I think we’re quite bad at taking people off medication.
Dr Sara Miller [00:34:09] Good at starting them are not particularly good at increasing them up. So I agree, I spend a lot of my time stopping drugs and in fact not just migraine drugs, I spend a lot of my time stopping lots of other drugs to say to people, well, if you don’t have blood pressure problems, do you need to be on this? If you don’t have this, do you need to be on this? And people change. Bodies change over time. And in terms of migraine prevention, your natural history goes up and down. We’re not using drugs to cure headaches. We’re not going to take them away forever. So we’re using them to be able to rewire the pain system, to turn the volume down towards a normal frequency or severity. Once you’ve achieved that and once you’ve been good for a few months on medications, it’s unlikely it’s the drug that’s still doing that. It’s going to be your new set, your new baseline level. So I agree with you. I don’t think patients should be on preventative medications without at least an attempt to stop them, after I’d usually say six to nine, six or 12 months after they’ve been good. To try and wean it down because a majority of people, especially with episodic migraine, can come off those drugs and can then be drug free for another two, three, four years. It’s going to come back at some point because that’s what migraine does. But then you’ve got something you can go back and use again, and you’re not subjecting to taking a medication all the time with potential side effects. But what often happens is that it’s started by a specialist and so nobody else wants to touch it. Because that’s a specialist drug, I’m not going to use it. Or it’s the worry of, well you’re better, that has to be the preventative that’s making you better so you have to stay on it forever. I had a woman who had been on a drug for 20 years, hadn’t had a migraine for 18, but nobody would stop her drugs. And all she came to me to do was to say, yes, you can stop that. Happiest patient of the day. So I think, again, this is something I discuss with patients when I’m having the chat about do you need a preventative and do you want to take it? Because, again, it usually can also swing some people’s mind about taking them, because lots of people come thinking, if I start this drug, this is a lifelong commitment I’m making. Whereas I’m saying to people, it’s not. Having migraine is a lifelong commitment but the treatment, you are looking at 9 to 12 months, hopefully maximum, and then you should be able to be off it. So I think it’s important that issue of saying potentially if you’re worried about the use of long term drugs, it’s important to define what long term is going to be because for me, migraine patients, majority of them aren’t going to need to be on lifelong medications. They’re all going to be some that do. And then it’s about minimising risk and again, choosing the best drug for the best patient.
Dr Katy Munro [00:36:30] We talked a bit about Botox, and our final question is about whether you can reduce the frequency of Botox. I know our protocol here is to do it every 12 weeks because we follow the PRE-EMPT protocol. And one of our patients has said that she was suggested that she should go down to every 6 months. What do you think about that?
Dr Sara Miller [00:36:46] So the evidence base is that it’s going to be every 3 months. There are some patients who will get better with Botox and will be able to have injections more spaced out. But that’s going to be very individual on the patient. So I know there are some patients who can have 4 months, who could go to 6 months, but not every patient can. There is an issue of saying that if you are too good with Botox, it has to stop. So on the NHS, there’s a Goldilocks rule. You are eligible to have Botox in the NHS if you have headaches on 15 days of the month, at least 8 of which are moderate to severe, you’re not using painkillers too often and you’ve tried at least 3 preventative drugs. If you get Botox and you stop having chronic migraine, so you go to having less than 15 headache days for 3 months in a row. You can no longer get Botox because you don’t meet the criteria.
Dr Katy Munro [00:37:33] Which seems harsh.
Dr Sara Miller [00:37:33] Scotland don’t have that because they were granted the licence for Botox after England. So they don’t have this Goldilocks rule on them, but different units are going to handle that in different ways. So some places will just say, well, actually, let’s go down to 4 months, and see if you can do it. Let’s go down to 5 months or 6 months. Some places may say, well, let’s just skip 3 months and if it all comes back, then it proves you need it. We keep monitoring it. Some people will say there is no more Botox. Get back on the list when it becomes chronic.
Dr Katy Munro [00:37:58] It’s another one of these variabilities across the country isn’t it? What patients are coming up against.
Dr Sara Miller [00:38:03] There is no set rule for doing it. And again, sometimes in the private sector, because of the cost, you will get patients that will say, well, I can’t pay every three months so I will eke it out for four months, six months. But the evidence base lies at three months and quite often it’s difficult in the NHS service to get outside of that. So, again, if you’re going to be going four months, five months, it’s really hard to fit you into a clinic.
Dr Jessica Briscoe [00:38:25] Hard enough to get people in every 3 months.
Dr Sara Miller [00:38:27] In the first place so to try then have people that are going to pop up less often, it’s difficult or you lose issues.
Dr Katy Munro [00:38:32] Resources are not there.
Dr Sara Miller [00:38:33] It would be lovely if we could have patients that were good not getting the Botox. But my idea at some point is saying that if it’s difficult, then it’s better to give it every three months to some patients that may not be needing it than to have patients that suffer by trying to push them longer.
Dr Katy Munro [00:38:47] Because as I understand it, the wind up of the brain, if you leave it for a long time. So when you’re initially having Botox, if you don’t have it every 12 weeks, you’re very unlikely that’s going to have its optimal effect-
Dr Sara Miller [00:39:00] I think they definitely- for the first two they should definitely be done as per protocol three months apart. And if I have any patients that haven’t had them done three months apart, I redo it and I wouldn’t take that as an adequate trial.
Dr Jessica Briscoe [00:39:14] I feel the same if people haven’t had 2 initially. If people have had 1.
Dr Katy Munro [00:39:18] Yes.
Dr Sara Miller [00:39:19] I wouldn’t count as a trial. I redo it. There is some evidence that there are some patients that can stop Botox. So they get better. But like we were saying with the preventatives, that they’ve been good for, you know, a year and they would be able to stop. But also, you know, in my experience with it, a lot of people need to have it long term. So it doesn’t seem to be a disease altering drug. So if you stop it, everything comes back.
Dr Katy Munro [00:39:42] Yeah.
Dr Sara Miller [00:39:43] It’s just a matter of time as to whether or not that’s going to be in a few weeks or in a few months, in a few years. There is also a lot of patients with Botox have a wearing off phenomenon. So they have the injections. It takes a few weeks to kick in. The middle of the month, month and a half, they’re very good. And then the few weeks before the injections due to the headache start to get bad again. And those sorts of patients, you say, well, potentially you’re not going to leave them for extra months because they’re already showing that they need it. I think those kind of six months I would only be considering about if you’ve got kind of super respond to patients so patients that are doing really well with the injections. And potentially don’t fit the criteria. But if the headaches come back, then they need to go back to the three month issues with those.
Dr Katy Munro [00:40:21] I’ve certainly had patients who did really, really well on two or three sets of Botox, but really didn’t enjoy the experience of having the Botox. And so we have left it longer from their personal choice. But sometimes they can get away with only having it every six months and that still works quite nicely, as you say.
Dr Jessica Briscoe [00:40:41] I’ve definitely had people where it’s been stretched out. I’ve had a few stop. Who’ve had it for years and years and years but I think that’s probably because having the initial Botox has probably made them sort some of their other triggers out rather than the Botox itself.
Dr Katy Munro [00:40:55] So that’s all of our questions for today. Thank you for sending them in. And if you think of any more, feel free to send them to info@NationalMigraineCentre.org.uk
Dr Jessica Briscoe [00:41:05] Or contact us on Twitter or via our Facebook page.
Dr Katy Munro [00:41:09] And don’t forget to keep listening to the podcast. Leave us a review. Share, share, share.
Dr Jessica Briscoe [00:41:14] Yes, please leave us a review on any of the podcast providers that you have.
Dr Katy Munro [00:41:19] And we would love it if you could give us a festive donation, which is twice the normal amount that you would normally give us.
Dr Jessica Briscoe [00:41:25] Via our Virgin Money Giving page and that’s available on our website and in the blurb underneath your podcast.
Dr Sara Miller [00:41:31] If you give lots of money, then I might put up a photo of me wearing my Christmas jumper, if you’re lucky. It’s very special.
Dr Katy Munro [00:41:39] Let’s have those donations pouring in. Thanks very much to Dr Sara Miller and Jessica and I will be back for the next series.
Dr Sara Miller [00:41:46] Thank you very much.
Dr Katy Munro [00:41:50] So we hope you’ve enjoyed our festive edition of this podcast, I’m here with Swati and Jessica and Charlotte, and we’d all, as a team, like to say thank you so much for joining us in this first series of Heads Up.
Dr Jessica Briscoe [00:42:03] Yeah, we’ve really enjoyed doing the podcast and we’ve really loved having all of your feedback and your lovely messages and suggestions to help contribute to our first series.
Swati [00:42:15] So please keep sending us your questions and any topics you want us to cover in Series two, which is going to come next year.
Charlotte [00:42:21] Yes. And we also want to thank all of our patients for sharing their experiences with us. It’s been wonderful hearing everything that you had to say and catch us in the New Year for Series two of the Heads Up podcast.
NMC team [00:42:31] Merry Christmas.
[00:42:41] 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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