A National Migraine Centre Heads Up Podcast transcript
Heads Up is the award-winning podcast series on all things headache, brought to you by the National Migraine Centre. Produced by leading headache doctors, it’s the trusted source of information and support for all those affected by migraine and headache.
You can find our episode transcript below. Want to listen to the podcast? Just head over to our Heads Up section here for hours of episodes that can help you manage migraine and control your headaches.
Need personalised treatment and advice? We can help! Book a not-for-profit consultation today with a world class headache doctor through the National Migraine Centre, the leading UK migraine clinic.
[00:00:00] Did you know there’s no such thing as a normal headache, headaches need a diagnosis, our doctors can help. 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 [00:00:23] Hello, I’m Dr. Katy Munro and I’m with Dr Jessica Briscoe.
Dr Jessica Briscoe [00:00:27] Hi there.
Dr Katy Munro [00:00:28] Today we’re going to be talking about vestibular migraine. This is a form of migraine, which is actually probably a lot more common than people realise. Often there’s a big delay in diagnosing it, but it causes huge impact.
Dr Jessica Briscoe [00:00:42] Yes. So I think we’ll start off by talking about what vestibular migraine is. Essentially. I mean, there are diagnostic criteria which are mainly helpful for a study point of view, but they can act as a guideline. So vestibular migraine is relating to those symptoms of vertigo that some people get during a migraine attack. So it has to be vestibular symptoms, which tends to be vertigo lasting between 5 minutes and 72 hours. And at least half of the episodes have to have been associated with some form of migrainous feature. So most people should have had a history of migraine or have some symptoms of migraine as well. So that can be the headache, which is a typical migraine headache, the sensitivity to surroundings, so light or sound sensitivity or visual aura as well.
Dr Katy Munro [00:01:27] Yeah, I think dizziness, we often hear that dizziness is a feature of an awful lot of people who are having migraine attacks. But in people who are diagnosed with vestibular migraine, the dizziness is very much a predominant symptom and can be incredibly disabling. So although the diagnostic criteria talk about anything lasting between 5 minutes and 72 hours, in some people, it can go on for days and days and be relentless. A bit like persistent aura, it sometimes just doesn’t go away and their lives are dominated by dizziness.
Dr Jessica Briscoe [00:01:59] Yeah. And I mean, I think we’ve sometimes seen it can be up to seven days can’t it?
Dr Katy Munro [00:02:03] Yeah. Yeah.
Dr Jessica Briscoe [00:02:04] And also I think the interesting thing about vestibular migraine is a lot of people don’t actually have a headache with it. And I think that can make it quite confusing and that can sometimes delay the diagnosis because we all know that most people think of migraine as a headache. But actually the predominant feature in vestibular migraine does tend to be that room spinning dizziness, the vertigo.
Dr Katy Munro [00:02:26] If you count up how much vertigo there is in the general population and look at the different types of conditions which are causing vertigo. There are a lot of studies that show that vestibular migraine is probably about one percent. But actually, I think that’s an underestimate. And there’s been some recent studies that show that in specialist clinics for dizziness, probably vestibular migraine is underdiagnosed and it may account for as much as 40 percent of people with that kind of presentation of dizziness.
Dr Jessica Briscoe [00:02:56] Now, that’s actually quite a lot.
Dr Katy Munro [00:02:58] It’s huge, isn’t it?
Dr Jessica Briscoe [00:02:58] I think we do see it quite a lot. I always think the interesting thing about vestibular migraine is how long it takes people to become diagnosed. So the thing I think everybody worries about when someone has a new episode of persistent vertigo is cerebella strokes or brainstem strokes. And I often see people who might have had that ruled out or had other causes of- so other sort of acute or sudden onset causes of vertigo ruled out. And then they haven’t necessarily responded well to treatment. And people can be left for a long time with the persistent vertigo, other quite disabling symptoms as well and not really know where they are. So it can take quite a few months for them to even have that label of vestibular migraine given to them.
Dr Katy Munro [00:03:43] So there is one particular other common condition which can cause dizziness that may cause confusion as well. And that’s a thing called benign paroxysmal positional vertigo. And that’s a very common thing as well. But it causes transient dizziness when people are either moving their head into different positions or very classically when they’re turning over in bed. That one is much more easily treated by a simple manoeuvre, which most GPS should be able to do. But it doesn’t have the same typical features that we see with vestibular migraine, which is that sort of sound and light sensitivity, sometimes getting headaches and those other migrainous features. So BPPV, as it’s called, is also something to be considered if you’re suffering from dizziness and getting your doctor to check it out. But vestibular migraine is really right up there and should be thought about more often.
Dr Jessica Briscoe [00:04:37] I tend to find that the thing that people have with vestibular migraine more than with BPPV is that brain fog as well.
Dr Katy Munro [00:04:43] Yes.
Dr Jessica Briscoe [00:04:44] And I think that’s something that- I think clinicians are sometimes bad at asking about it and people don’t know how to describe it so don’t necessarily volunteer the information.
Dr Katy Munro [00:04:54] Yes, that’s sort of cloudy headed, fuzzy thinking. And sometimes with vestibular migraine, people also get a sensation of fullness in their ear or sensation of pressure that can sometimes be diagnosed with another condition that causes dizziness, and that’s Meniere’s disease. So Meniere’s disease comes on in sudden attacks of dizziness, but it’s also linked with deafness.
Dr Jessica Briscoe [00:05:18] Yeah, so typically that deafness, I mean, it’s a triad, isn’t it? It’s the dizziness, room spinning dizziness, fullness in the ears and deafness. So I think if a lot of people hear about fullness in the ear, they will sort of- an alarm bell will go off in the doctor’s head and they’ll think Meniere’s, that’s probably overdiagnosed, isn’t it?
Dr Katy Munro [00:05:36] I think it probably is. We were listening to a consultant who specialises in this, speaking the other day, and he was feeling very much that we should be thinking much more about vestibular migraine and raising awareness of that. And that we’re probably over diagnosing Meniere’s, which is a very important thing to get the diagnosis of that right as well, obviously. But if we are having a diagnosis of vestibular migraine, then what do you normally try and advise people in terms of treatments?
Dr Jessica Briscoe [00:06:07] So I think the key is to try and manage all of the symptoms so you can try and acutely manage the symptoms. So the symptoms of dizziness, pain, if people have it. But also I very strongly feel that if someone’s having recurrent episodes or persistent episodes of this, we should be trying to treat it as we do with frequent migraine. So the difficulty is vertigo doesn’t tend to respond to triptans, which is our go to for most migraine symptoms.
Dr Katy Munro [00:06:36] They’re much better for the pain, aren’t they?
Dr Jessica Briscoe [00:06:38] Yeah, sometimes I find people do respond to aspirin, but that can be transient. Do you ever use prochlorperazine or stemetil?
Dr Katy Munro [00:06:45] I think a lot of people have been given that because not only is it one that GPs are used to prescribing, but you can also buy over-the-counter. Sometimes people will get stuck on it for a long period of time. And I think one message that I would say is that people should only be trying it for a two or three day short period of time. It doesn’t work very well in this kind of dizziness. It’s good for nausea and it can be good for other kinds of dizziness sometimes, but for vestibular migraine it isn’t really very effective.
Dr Jessica Briscoe [00:07:17] And I think we also want to talk about which preventatives we tend to use. Are there any ones that you specifically used for vestibular migraine?
Dr Katy Munro [00:07:24] Probably normally start off with the usual ones that we try and for any kind of migrainous process. So the amitriptyline, propranolol type things and then going on to some of the others. I mean, I think some of our patients have done quite well on flunarizine. You know, the whole range of treatments that we use for migraine in general can be helpful in vestibular migraine and even things like greater occipital nerve blocks. They may be helpful too.
Dr Jessica Briscoe [00:07:52] I found occipital nerve blocks quite useful, particularly if people are having persistent frequent attacks. Again, as you would do in other types of migraine, trying to sort of break that bout can be quite useful whilst you’re waiting for the preventative to take effect.
Dr Katy Munro [00:08:08] I suppose we also always need to emphasise to anybody with migraine that it is about reducing that background irritability of the brain and so eating regularly, eating low carb, high fat, high protein diets can be helpful, making sure you’re getting good quality sleep and regular hours of going to bed and waking in the morning. All those general things that we would usually advise can also be helpful in vestibular migraine.
Dr Jessica Briscoe [00:08:32] Absolutely. What about vestibular rehabilitation? There are a lot of people- it’s a specific type of sort of physiotherapy and I think we’re probably going be talking to someone a bit more about that later.
Dr Katy Munro [00:08:41] Yes, we have a special guest later,
Dr Jessica Briscoe [00:08:43] Sometimes I’ll see people who are in a bout of vestibular migraine and they’ll actually find that vestibular rehab hasn’t been particularly useful for that. Now, there was actually- we were enlightened about that. The lecture we went to the other week. Where actually the consultant was saying that it’s better to save vestibular rehab for when the bout has settled because if you actually do rehabilitation during a bout it can bring on symptoms.
Dr Katy Munro [00:09:10] Yeah. One of the messages about vertigo is that migraine can give people dizziness and vertigo, but also the other way round, if people are having tests to diagnose why they’ve got vertigo, sometimes that can trigger a migraine. So people have caloric tests where they have something flushed into their ear.
Dr Jessica Briscoe [00:09:32] It sounds quite unpleasant
Dr Katy Munro [00:09:34] It does sound quite dramatic. But they did find that sometimes a couple of days later, people would have a migraine as a result of having the test. So I think the answer is that there’s a lot of overlap with these symptoms and conditions. But we have to have a really low threshold for thinking about vestibular migraine and wondering whether this is the diagnosis when patients present with dizziness.
Dr Jessica Briscoe [00:09:56] Just wondering if this is a good point to talk about the ongoing, how we sort of carry on funding the podcast actually before we carry on with our next part of the discussion. So we wanted to say thank you to everyone who’s donated so far because we are a charity. Without your help, we wouldn’t be able to be doing these podcasts, we wouldn’t be able to have our lovely special guests in as well, and we wouldn’t be able to get a slightly better sound equipment.
Dr Katy Munro [00:10:22] Yes, hopefully. So if you would like to give us a donation, large or small, just go onto our page on Virgin Giving, and that would be lovely. Thank you very much to everybody who’s already done that.
Dr Jessica Briscoe [00:10:37] So there are a couple of other things we wanted to talk about with vestibular migraine. I often get asked. So some people say that they’ve been diagnosed with brainstem aura migraines instead. And does it matter what you call it? Is there a difference between vestibular migraine and brainstem aura?
Dr Katy Munro [00:10:51] I think you can get a little bit bogged down in the minutiae of what symptom is predominant. And I think the main message is really to think about it as being a migrainous process and to be getting to grips with that. Don’t you agree?
Dr Jessica Briscoe [00:11:05] I completely agree. I mean, again, from a diagnostic- if you’re looking at our guidelines about what exactly each diagnosis consists of, there is a lot of overlap anyway. With vestibular migraine can have tinnitus, visual aura, some of the numbness and tingling, word finding difficulties as well. And actually they might have attacks where that doesn’t happen.
Dr Katy Munro [00:11:28] Yeah but it’s all migraine.
Dr Jessica Briscoe [00:11:29] Yeah, it’s all migraine. It’s about focussing on the symptoms, trying to manage them as best as possible. I think it is useful for people to know that they have vestibular migraine. I think people feel happier knowing that they have that diagnosis, but actually, you’re right. Let’s treat migraine as migraine and try and tailor our treatments to their symptoms.
Dr Katy Munro [00:11:50] And each individual, yeah. There is another condition- sometimes people who have had a traumatic brain injury, for example, in a road traffic accident or something like that, can develop dizziness afterwards. And sometimes this can lead to vestibular migraine symptoms. But apparently in some studies, they found that those kind of people had similar symptoms to migraine, sometimes before the injury. So that’s also interesting, isn’t it, that maybe their brain was a little bit vulnerable and the brain injury led them on to get more specifically dizziness symptoms as part of their migraine picture?
Dr Jessica Briscoe [00:12:28] Yeah, it’s very interesting. So in summary, I think what we’re saying today is vestibular migraine is probably far more common than is currently being diagnosed as. Sometimes the things that it’s important to rule out are cerebellar strokes. Treating vestibular migraine is important, but we’ve got to try and treat the symptoms and treat it as we do other migraines in the sense that if it’s frequent and recurrent, start preventatives nice and early to try and help. And also don’t forget your lifestyle triggers to try and dampen down that overactivity.
Dr Katy Munro [00:13:03] Let all of that settle to.
Dr Jessica Briscoe [00:13:05] So Katy had a chat with Lisa Burrows, who is a specialist, vestibular physiotherapist who has expertise in vestibular migraine about the role of physiotherapy in the treatment of this.
Dr Katy Munro [00:13:18] I’m here today talking to Lisa Burrows, who is a physiotherapist who is especially interested in vestibular migraine. Welcome.
Lisa Burrows [00:13:26] Thank you.
Dr Katy Munro [00:13:28] Nice to meet you, Lisa. So what we would like to do, really, is hear what you think is the key points for people with vestibular migraine, and how physiotherapists can get involved and help.
Lisa Burrows [00:13:39] OK, so my particular role is quite unique in the physiotherapy world. I’m a consultant physiotherapist in dizziness and balance and I work within an ENT outpatients. So we see patients that have dizziness associated, usually with ENT problems. We are seeing an increasing number of vestibular migraines and they are equal in prevalence to BPPV in our clinics. So about 25 to 30 percent of our patients are vestibular migrainous in nature, which I think is different to say if you were in a normal neurology clinic where it’s about 10 percent of headaches in neurology clinics are vestibular migraine.
Dr Katy Munro [00:14:26] So who’s making the diagnosis of vestibular migraine? Is it you?
Lisa Burrows [00:14:31] Me. Yes.
Dr Katy Munro [00:14:31] So when people get to you, you realise that actually it’s vestibular migraine. That’s why they’re feeling so dizzy. So just for our listeners, BPPV is benign paroxysmal positional vertigo, which is also a very common thing, but very different from migraine.
Lisa Burrows [00:14:47] Yes, it is. So the key characteristics of BPPV are that you would get 30 seconds of dizziness on head movements, particularly. You would notice it on looking up, looking down, rolling over in bed.
Dr Katy Munro [00:15:01] Yeah, it’s common in rolling over in bed. I’ve certainly seen that a lot.
Lisa Burrows [00:15:05] Yeah, that’s the key question actually. If you have dizziness rolling over in bed, then that’s an indication for me to use a Hallpike Dix test.
Dr Katy Munro [00:15:15] And then that can be treated and really cured almost immediately in some people by an epley’s manoeuvre,
Lisa Burrows [00:15:23] By an epley manoeuvre or a gufoni if it’s in the lateral canals.
Dr Katy Munro [00:15:27] So that’s very different from migraine. What gives you the clues that this is somebody with vestibular migraine rather than BPPV?
Lisa Burrows [00:15:36] OK, so it’s usually in the symptoms that they present with. In migraine patients, they’ll have dizziness that varies in time length. So 30 percent of them will have dizziness for 5 minutes – 10 minutes. Another 30 percent will have dizziness for up to 6 hours, and then another 30 percent will have the main migraine symptoms for up to 72 hours. The 10 percent around that are involved with people that have dizziness for seconds and weeks at the other end of the scale.
Dr Katy Munro [00:16:12] So a real variability in the effect and then, of course, in the impact on the patients, because 10 minutes of dizziness is one thing, but 72 hours of dizziness or even chronic dizziness, it never really goes away. People are really struggling
Lisa Burrows [00:16:27] And they have that refractory period where, you know, the main bulk of the symptoms might only last 72 hours. But the recovery from that can last weeks, weeks and weeks. And typically, we’re looking for associated symptoms to diagnose that. Have they had a history of migraine? They have a history of aura? Do they feel sick with it? Are they having any ringing, fullness in their ears, tinnitus? And they don’t have to have these symptoms at the same time, but they can experience them at different times. They don’t follow a normal migraine with aura pattern they can happen independent of each other.
Dr Katy Munro [00:17:03] And migraine, we know, generally it can change from attack to attack and can change throughout a person’s life. And so sometimes we see people with visual aura, with no headache, with other neurological symptoms, and the headaches can change in position. So, yeah, I think it’s really about listening carefully to the history and finding out these clues. And of course, family history of migraine is another thing we commonly find with that. Do you find that many of your patients with vestibular migraine have only dizziness and no headaches, or is there almost invariably a history of headaches?
Lisa Burrows [00:17:43] Invariably there’s a history of migraine symptoms and migraine with visual, or some kind of, aura. But they do change over people’s lives. And we find that at big hormonal changes, particularly in women. So we see women that are menopausal and they’ve had visual aura migraines and they’ve morphed into this dizzy type of migraine and they don’t know what it is. But as soon as you say migraine to them, something clicks. They go, oh yes! Funny you should say that I have a headache or, you know, it’s around the time that I have my period or…
Dr Katy Munro [00:18:22] or a bit of brain fog?
Lisa Burrows [00:18:24] Yeah a bit of brain fog, I can’t concentrate. I feel fuzzy in my head. Not always a headache. About 40 percent of patients with vestibular migraine do not have a headache.
Dr Katy Munro [00:18:33] Yeah, and that makes it so difficult to diagnose. And I think that’s why people get a long delay in diagnosis and sometimes sent all around different pathways before they get a definitive claim.
Lisa Burrows [00:18:48] Quite commonly they’ll have a neck pain and shoulder pain. So we talk about this headache sinking and they’ll associate with that quite a lot.
Dr Katy Munro [00:18:59] Right. That’s an interesting way of looking at it. Yeah. Neck and shoulder pain. I think definitely link together.
Lisa Burrows [00:19:05] And they’ll describe ear pain and they’ll say, I’ve got this earache around the back of my ear, forgetting that the ear is on the head.
Dr Katy Munro [00:19:16] Yes, it almost doesn’t count.
Lisa Burrows [00:19:19] Yes, it’s not dissociated from it. It’s actually on your head. But it’s just been presented in a different way.
Dr Katy Munro [00:19:26] When you’ve made the diagnosis of vestibular migraine and had a conversation about it and explained it a bit, what happens next?
Lisa Burrows [00:19:35] They usually have lots of questions about whether this is really a migraine because, you know, I’m not having a headache with it. Or are you sure this is not Meniere’s disease?
Dr Katy Munro [00:19:44] Yes.
Lisa Burrows [00:19:44] Because people Google. They do use the Internet.
Dr Katy Munro [00:19:49] Dr Google.
Lisa Burrows [00:19:49] And so we have a discussion about observing progressive hearing loss for a differential diagnosis with Meniere’s disease. And potentially there’s an overlap of those two syndromes, about 40 to 50 percent of patients differentially diagnosing BPPV. About 5 percent of patients will have BPPV and vestibular migraines triggered by that. And then we consider other things, other ocular motor triggers to it. We do ocular motor screening examinations. We look at sensitivity to motion and then we can use exercises to desensitise that, but we go very low and slow in the dosage. We also discuss diet and lifestyle, cutting out caffeine. We look at medication. Are they on Tramadol, codeine?
Dr Katy Munro [00:20:41] Yes, we are campaigning against those kind of things.
Lisa Burrows [00:20:44] Yeah, even regular paracetamol. You know, people will say I’m not taking regular paracetamol and you dive a little bit further they’re taking it three, four or five times a week. So identifying these medication use headaches is really important.
Dr Katy Munro [00:21:00] So detoxing the brain from some of the overly used, even simple painkillers that you can buy over the counter can just really help the dizziness as well.
Lisa Burrows [00:21:08] Yeah. Yeah.
Dr Katy Munro [00:21:09] That’s so important.
Lisa Burrows [00:21:10] And, you know, I think the NICE guidelines suggest an abrupt withdrawal. And we have really good success with that. But I have to warn them about that. Their biggest concern is are all of their other pains going to get much worse? And in my experience, they don’t.
Dr Katy Munro [00:21:27] OK, that’s reassuring. Because we talking to patients about medication overuse and the detox, if it’s for headaches, we do sometimes get a worsening of the headaches when they come off. So we again, as you said, we have to have a long conversation about explaining what’s going to happen.
Lisa Burrows [00:21:42] Yeah withdrawal headache. And we have a conversation about withdrawal headache with caffeine as well, because we asked them to abruptly withdraw that. That accounts for about 40 percent of migrainous symptoms in this patient group, so.
Dr Katy Munro [00:21:56] Excellent. So, what kind of exercises would you be recommending? Is that something you can describe on a podcast or would we need a video for that?
Lisa Burrows [00:22:05] We can have a go at describing them. We use something called- well, it depends on essentially what the patient has problems with. So we try and be task specific and we tailor it to the patient. We do some vestibular ocular reflex retraining, which involves looking at a target and then moving your head, whilst you’re looking at the target and keeping that firmly in focus.
Dr Katy Munro [00:22:30] So the target’s still, but you’re moving.
Lisa Burrows [00:22:32] Your eyes are still on the target and you’re moving your head from side to side, within a small range. But that movement has to be about 2 a second. And if you start to lose the focus of the target, you need to slow it down a little. If it’s not hard to do, you need to speed it up. We know that if we do them at a high dose, then these exercises can actually trigger migraines. If we do them at a low dose, they don’t help improve them. Yeah, so the dosage. Exercise is like drugs. You have to get the right prescription for the patient.
Dr Katy Munro [00:23:09] People are very sensitive and too much too fast, we do find people sometimes go crazy doing the exercises and that makes things worse.
Lisa Burrows [00:23:18] I always stress their favourite word over the rehab period is going to be moderation, and that’s what we stress. And we also do sensory balance exercises. So getting them to tune into their balance organs in terms of movement and activity without the visual cues. And then they’ve got some kind of idea of how their body is moving without the the complication of visual information going in.
Dr Katy Munro [00:23:45] So they’re doing it with their eyes shut.
Lisa Burrows [00:23:47] Yeah. So they do sit to stand with their eyes shut. They do balancing two feet together or one foot in front of the other. We add in head movements. We add in arm movements, we add in trunk rotations. All specific to what that person needs to achieve in their daily life.
Dr Katy Munro [00:24:02] That sounds amazing. So what kind of success rate would you be looking to? Are you hoping that the dizziness will go? Are you hoping to improve it by, say, 50 percent? What’s your measures of outcome?
Lisa Burrows [00:24:16] So when I see a patient, I have a guesstimate of how I feel they might improve over the next six weeks, depending on the severity, whether they’re episodic vestibular migraine or chronic vestibular migraine. If they’re chronic, we might be looking at a 20 to 30 percent. If it’s medication use, I might be looking at 80 percent improvement in their symptoms. If it’s linked to caffeine, again, I might be looking at a big improvement relatively quickly. But if they’ve got ocular motor involvement and they’re sensitive to ocular motor eye movements, then we might be looking at a little bit longer. If their episodes are frequent and severe, then again, we’re going to be looking at a much longer period of time, maybe three to six months.
Dr Katy Munro [00:25:08] I would say, from our point of view at the National Migraine Centre, suggesting things that people can try and improve their migraine, we always say, you know, you have to be a bit patient. The brain doesn’t change that quickly. And with medications and supplements and things, certainly you need to hang on in there for at least three months. And how often would they be doing the sort of exercises that you were describing? Would that be every day?
Lisa Burrows [00:25:35] Yeah, and we start with gently once a day, sometimes for 10 seconds, sometimes for 30 seconds, maybe two or three times in the day, the next week. And then up to- within about six weeks, I would expect them to be able to do each of the exercises for a minute for up to five times a day. But again, I give them the opportunity to tailor that up or down and not to do it during an attack.
Dr Katy Munro [00:26:01] Uh huh. Yeah. And then if you find that the vestibular migraine is really improving and settles down, I expect that you’re finding, as we do, that sometimes migraine settles. You can have quite a prolonged period of time where you’re not really bothered and then it comes back again. So is that something you’ve come accross?
Lisa Burrows [00:26:19] Yeah, we see that quite commonly. And I would say we see a number of patients that come back every few years, maybe because they’ve had an exacerbation in their symptoms and they’ve not settled down. And we always talk about having a set back plan on our first appointment so that they have a baseline of what their management strategy is and what their acute attack, so a prevention strategy and acute attack strategy is. And I always encourage them to write this down and keep it as a setback plan. When they come back to me, they invariably say, oh, no, I’ve lost the set back plan, what was it? And we go right back to basics and the symptoms disappear again. And I always describe it as a three month programme or detox. It’s not a life sentence. And there are ways of reintroducing things into the diet and lifestyle. There are ways of increasing their exercise capacity quite gently so that they can cope with that. But again, not to see it as a kind of a life sentence.
Dr Katy Munro [00:27:32] There’s lots of hope.
Lisa Burrows [00:27:33] Yeah! And then have a set back plan. A significant amount of our patients improve. There’s very- in fact, we have only about a 3 percent onward referral to neurology. So, you know, I’m an independent prescriber and I’m able to prescribe medications. We have some great guidelines in the BASH guidelines, British Association for the Study of Headache.
Dr Katy Munro [00:27:58] Newly updated.
Lisa Burrows [00:27:59] Yeah! Newly updated and some NICE guidelines. And within our trust, we have a document about prescribing in dizziness and balance. So this really does help us progress patients through.
Dr Katy Munro [00:28:13] And in the UK, are there lots of vestibular migraine physios like you? Or are all my patients going to have to come to you for this?
Lisa Burrows [00:28:22] So I’m pretty unique as a consultant physio working in this role, as an independent prescriber. I’m the only one in the country. We have a handful of physiotherapy led balance clinics. Most of these balance clinics lie in the domain of audiology, but that is moving, that is transitioning. As a physio group, we have almost 500 members of our specialist interest group, which is ACPIVR, the Association of Chartered Physiotherapists interested in vestibular rehab. But most of those are working in other specialisms, so neurology or musculoskeletal and that means that they’re not seeing them all the time. I see thousands of patients like this. So I’m quite familiar with dizziness and I’m not scared by it. Whereas for a normal postgrad physio, it’s not taught at all on our degree.
Dr Katy Munro [00:29:26] Like migraine in general, I think there’s a lack of education and understanding in all sorts of areas of medical professionals, healthcare professionals.
Lisa Burrows [00:29:34] There’s a big role for physiotherapists with headache management. You know, we look at cervical spine relationships, we look at muscle activation, we look at ocular motor screening. We look at vestibular balance organs. We look at strength, balance and conditioning. And we can do the cognitive behavioural stuff, the motivational stuff, just tailoring it to that patient package. So I’d love more physios to be involved in this. I know they’ve got, is it Anne-Marie Logan?
Dr Katy Munro [00:30:09] Oh, yes. Anne-Marie, Yes.
Lisa Burrows [00:30:10] So we’ve got Anne-Marie Logan, who’s flying the flag. But I think across the country we’re very, very short of it. And I do think we need to push into those areas.
Dr Katy Munro [00:30:19] So we need to campaign together, I think, to raise awareness. And just a final question about age. What age do people get vestibular migraine in your experience? Do you see children with it or is it just more elderly patients?
Lisa Burrows [00:30:34] No, there’s no- on the diagnostic criteria for vestibular migraine, there’s no age limitation on it. The majority of migraineurs will experience their first onset between the ages of 18 and 55. Outside of that, I tend to investigate people that develop migraines over the age of 55 or under the age of of 18. And I think that’s fundamentally important to get the differential diagnosis correct. And even now, I think people often confuse vestibular migraine with migraine with brainstem auras. You’ve got to listen to the patient. You’ve got to listen. Do they have speech and swallowing problems at the same time? Do they follow traditional migraine patterns? But I think the biggest onset is in women and it’s between those age groups.
Dr Katy Munro [00:31:33] Yeah, I agree. This is what we see in the clinic week after week. But of course there is a wider age range. But yes, I agree with you. You need to be on the safe side and just have excluded other things if it’s not a typical history.
Lisa Burrows [00:31:47] And interestingly, this week I’ve seen a patient who is male and has a testosterone hormone replacement, and when his injections die off, he gets vestibular migraine.
Dr Katy Munro [00:32:05] So change in hormone levels in a man rather than a woman, which is what we typically see, with estrogen fluctuations.
Lisa Burrows [00:32:10] So we’re getting endocrinology to look in more detail about maintaining his testosterone levels. And so, you know, it’s interesting and it’s developing all the time.
Dr Katy Munro [00:32:23] It’s a fascinating topic. Thank you so much for that, I know that our listeners are going to be absolutely fascinated by that talk. So thank you very much.
Lisa Burrows [00:32:33] My pleasure.
Dr Katy Munro [00:32:39] Swati had a chat with one of our patients, and this is what they have to say about this.
Swati [00:32:47] Hi Schelay, thank you for joining us on our podcast. Since you mentioned about the doctors saying that it was a complex migraine. What was it that was a differentiating sort of symptoms from normal migraine symptoms? What was the differentiating symptoms that made you feel that it wasn’t just a migraine, it was something different from that?
Schelay [00:33:06] I think it was also having the nauseous and feeling really dizzy. So for me, I didn’t really ask any questions to be honest, I just got that diagnosis and took it with me. And obviously, in my last year at uni, I was diagnosed with having anxiety as well. So maybe they crossed related, but I wasn’t told anything particularly why they were complex. They just said it was complex.
Swati [00:33:34] And did you see any change in symptoms since then? So have your symptoms changed?
Schelay [00:33:39] Oh, yeah. They’ve gotten worse, for sure.
Swati [00:33:41] Coudl you tell us a bit more about your symptoms?
Schelay [00:33:43] Yeah. Should I tell you from when I realised they changed?
Swati [00:33:46] Yeah.
Schelay [00:33:47] So in December I had an ear infection. So prior to all of this, when I finished uni, my headaches, they pretty much went. I would get the odd headache here and there, but it wasn’t anything in particular. So I thought great, I don’t have migraines anymore. And then December 2018, I got an ear infection, never had an ear infection in my life. And that was just really weird to have. I got antibiotics and thought that it would clear up within a week. And then that was December. And in January I went on like a weekend away, came back. And just this headache that I had was just awful, like I’d never experienced a painful headache like that. And I was getting weird symptoms as well with it. So I was feeling really nauseous and really dizzy, but it was quite severe. It was that things were just spinning like nothing was making sense. It was almost like I was not with it. So I was like, right, let me go to A&E. Went to A&E and the doctor there was just like, oh so the headaches that you’ve got because you’re suffering with like a cold or flu, that’s just one of the symptoms that you’ll have with the flu and the dizziness and the nausea, that’s the vertigo. You have vertigo and that’s from your ear infection. Just see how you go over the next couple- but it should clear up, you’ll be fine. So I was like, OK, no problem. The doctor saying that I should be all right. And then from February, it just got worse, literally. Like my headaches were mainly on the left side and I was getting a lot of pressure behind my eye, sensitive to light, more of my weight balance was going to the left hand side and I felt like I was walking to the left and it got to the point where I was actually asking people to like video me when I’m walking. Asking me, like, you know, does it look like I’m walking funny? And I went to the doctor’s and yeah, I wasn’t really getting much feedback from them.
Swati [00:35:43] It must have felt really scary.
Schelay [00:35:44] It was because it was just like- it felt like, am I making this up? It got to a point where I was like, am I going mad because I’m experiencing these physical symptoms yet no one’s giving me an answer? And I was taking painkillers and that wasn’t doing anything. It maybe subsided the headache a little bit, but then it wasn’t explaining all these other neurological pains that I was going through or symptoms. And I finally got another referral to a neurologist. She didn’t really do an examination of me. She just kind of basically agreed with the doctors, when I saw them back in 2015/16, and said you’ve got complex migraines. And again, I was like, OK.
Swati [00:36:22] But they didn’t factor in the fact that you were having different symptoms from what you were having before?
Schelay [00:36:27] No, I didn’t have any examination. She just said, you sound like you’ve got a combination of tension headaches. I can’t pronounce the- your sinuses and migraines with aura. And she said, let’s try you on magnesium. I already had blood tests to say that I was vitamin D deficient. So take those and see how you get on and if you need us- basically if you need us, contact us. Wasn’t really seeing much of a difference and from after that, my symptoms were getting worse. I was getting all these internal tremors like I was literally just- it was so weird. Like I’ve never had it before, but I just felt like I was always vibrating and my head was moving. And if I had something in my hand, my hand was moving and I was like, this has to be some sort of serious chronic disease that people are missing here. It was just awful. Absolutely awful.
Swati [00:37:23] So how did you kind of understand that it was vestibular migraine?
Schelay [00:37:29] I found it by accident. So with my anxiety, I’m a serial google-er. So I just started to Google my symptoms because I know this is probably not the best answer, but at least I’ll have some sort of like something- someone must be going through this. And obviously Google gives you the scary stuff. You’ve got Parkinson’s, you’ve got essential tremors, you’ve got MS and then I went on to YouTube and I typed in internal tremors because those were the things that was bothering me the most and obviously had the internal essential tremors and stuff. And then I clicked on this video by accident and it was a supplement for internal vibrations. And I clicked on it very by accident. And it was this girl. And she was basically saying that these are one of the symptoms that she was having with her vestibular migraines. And I was like, what is this vestibular migraine?
Swati [00:38:19] Very few people know about it.
Schelay [00:38:22] And when I heard her story, I literally burst into tears because I was like, finally, I have found someone who is going through what I’m going through. And then I just found a whole massive community of people that have vestibular migraines. And it was just it was upsetting to know that they were going through it. But it was also a breakthrough for me because it was just like I finally can get some sort of treatment plan to get back onto who I was before going through all of this stuff.
Swati [00:38:50] Also, I feel like that community part that you just said sometimes knowing the fact that you’re not alone. Not saying in the sense that you want more people to suffer, but knowing that somebody else understands what you are going through kind of helps with your own anxiety issues. I feel like when you read all this stuff and you read all this things on Google, the anxiery sort of builds and more and more. And once you sort of know that there are other people out there who get the same symptoms, you’ve got the same problem. You kind of get that hope.
Schelay [00:39:22] Yeah. That was literally it. It gave me hope because it was like, OK, when I can go to see you guys, I can actually talk about it and actually be confident that potentially this is what I’m going through rather than coming from not knowing anything and still thinking I’ve got MS or something like that. And it’s definitely eased my anxiety. I just feel happy to be honest and actually feel so much better because I feel like I can see a road to recovery.
Swati [00:39:46] Perfect. Today when you had a conversation with the doctor, I think you spoke to Dr. Munro. So is it now, finally- because you self diagnosed it to be vestibular migraines, has now been confirmed?
Schelay [00:40:00] And she said that she believes that it is chronic migraines with vestibular symptoms. So that was really great to actually get a confirmation. And she’s given me a preventative plan that I can start using today to look at ways on how to reduce my symptoms, like my dizziness and things like that, and to calm my nerves and stuff. So, yeah, I’m just excited to get this stuff so I can feel better. I know that I may not be 100 percent, but if I could just feel like 60-70 percent, I’ll be happy.
Swati [00:40:36] Well, thank you for sharing a story with us.
Schelay [00:40:41] You’re welcome! Thank you.
Swati [00:40:42] Thank you for joining us.
Dr Katy Munro [00:40:46] Thank you for listening to this episode about vestibular migraine. Our next episode will be concentrating more on children and migraine. There are some things which are similar and some things which are quite different. And we’ve got a couple of kids telling us about their own experiences of migraine. So join us next time for the next episode.
[00:41:12] You’ve been listening to the Heads Up podcast, if you want more information or have any comments, e-mail 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.
Our factsheets provide general information only. They are not intended to amount to medical advice on which you should rely or to advocate or recommend the purchase of any product or endorse or guarantee the credentials or appropriateness of any health care provider. No material within our factsheets is intended to be a substitute for medical advice, diagnosis or treatment. You must obtain professional or specialist advice before taking, or refraining from, any action on the basis of the content on our factsheets. Do not begin a new medical regimen, or ignore the advice of a medical professional, as a result of information contained within these factsheets, our website or from any of the websites to which we may link. Although we make reasonable efforts to update the information on our factsheets, we make no representations, warranties or guarantees, whether express or implied that the content on our factsheets and website is accurate, complete or up to date. Any hyperlinks or references are provided for your convenience & information only. We have no control over third party websites and accept no legal responsibility for any content, material or information contained in them. The information provided in this factsheet does not constitute any form of legal advice and should not be treated as a substitute for specific legal advice. It is not intended to be relied upon by you in making (or refraining from making) any specific decisions. We strongly recommend that you obtain professional legal advice from a qualified solicitor before taking or refraining from taking any action. You may print off, and download extracts, of any page(s) from our website for your personal use and you may draw the attention of others within your organisation to content posted on our site. You must not modify the paper or digital copies of any materials you have printed off or downloaded in any way, and you must not use any illustrations, photographs, video or audio sequences or any graphics separately from any accompanying text. You may not, except with our express written permission, distribute or commercially exploit the content.