A National Migraine Centre Heads Up Podcast transcript
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[00:00:00] Did you know some people’s migraine makes them temporarily unable to walk or use their arm? It’s definitely not just a headache. Welcome to the Head’s Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr Jessica Briscoe [00:00:23] Hello and welcome to Series 3 of the Head’s Up podcast, I’m Dr. Jessica Briscoe and I’m here with Dr. Katy Munro.
Dr Katy Munro [00:00:31] Hello. And it seems ages since we did this. So I hope all of our listeners are still there and have enjoyed some of the early summer.
Dr Jessica Briscoe [00:00:40] Yes. Hopefully it gave everyone a chance to catch up with our previous episodes because we’ve got two full series now available to listen to.
Dr Katy Munro [00:00:49] We have. It’s been over a year now. We had a birthday celebration the other day, didn’t we, Jess.
Dr Jessica Briscoe [00:00:53] We did! It was World Brain Day and that coincided with our first ever episode. So today we’re going to have a chat about some of the rarer forms of migraine: hemiplegic migraine and retinal migraine. Now, these are two areas where I actually feel that there’s not huge amounts of good quality information out there. So we thought it was really important to try and sift through the facts and give people some good, good quality advice about how to recognise these, when to seek further help and the dos and don’ts essentially. Get rid of some of those myths.
Dr Katy Munro [00:01:30] There’s quite a lot of confusion, isn’t there, around these. People sometimes over diagnosing hemiplegic migraine certainly. We did a little video on our social media the other day, Prof Booton did that, which was really helpful I think. We’ll go into a bit more detail today.
Dr Jessica Briscoe [00:01:49] Absolutely. So maybe if we start off by talking about, well, we’ll start with hemiplegic migraine, I think, and then we’ll talk about – we’ll do them separately because they are two separate forms of migraine. So maybe we start off by talking about hemiplegic migraine. So it’s actually a very rare form of migraine. Essentially, the hemiplegic aspect is a form of aura. We’ve defined aura before, but aura is what we call a positive, although it doesn’t always feel positive when you have it, but a positive neurological feature, that means an additional feature which occurs before the headache phase. Now, this is commonly thought to be only visual – so dots in the field of vision, zigzag lines, blurring, but actually aura can affect any modality so smell, taste, balance and motor power. So for in hemiplegic migraine, it’s where the motor aspect is affected and you get loss of power or paralysis on one side of the body. Essentially it can affect any part of the body so it can be the upper or lower limb or the face or a combination of all three.
Dr Katy Munro [00:02:54] Yeah. So hemiplegic comes from the word ‘Hemi’, meaning half, and ‘Plegia’, meaning weakness and that’s the key thing really with this kind of migraine, isn’t it, because it’s actually motor weakness, which means you can’t move your muscles.
Dr Jessica Briscoe [00:03:10] Yes.
Dr Katy Munro [00:03:10] Now this is where the confusion comes I think is because some people get a sensory aura which is a feeling of numbness or heaviness on one side of the body but they could actually move their arm or leg or whatever. So with true hemiplegic aura and hemiplegic migraine, it’s actually weakness of the muscles. They can’t move that side. It may droop down or the arm or leg may actually physically not be able to be moved.
Dr Jessica Briscoe [00:03:42] Yeah, absolutely. Yeah. We often say- people often come in and say, I’ve been diagnosed with hemiplegic migraine and we have to really drill down, don’t we, to find out whether that is actually that pins and needles sensational or paresis that you can get as either part of an aura or part of a migraine without aura as well during a migraine. And sometimes, as you said, that can feel like you can’t move part of your arm when you’ve got it but actually, as you said, you can.
Dr Katy Munro [00:04:11] You can move it, yeah. But of course, with the hemiplegic features, you often people also get visual aura and they can also get speech disturbances and confusion, sometimes even a loss of consciousness or, even really extreme cases, they can lapse into unconsciousness.
Dr Jessica Briscoe [00:04:33] Absolutely.
Dr Katy Munro [00:04:34] And they might get mood changes. So it’s not just the hemiplegia. It’s all the other symptoms that we get with aura as well. And then with aura and by definition, it usually comes and goes within 60 minutes and then the headache follows. But I actually have read a couple of reports that say that sometimes a headache starts first so that’s even more confusing.
Dr Jessica Briscoe [00:04:59] It is slightly confusing. I’ve read a couple of those reports. I think everybody that I’ve seen with this has either had, well sometimes you have no headache, as with lots of types of migraine, or not a significant headache, or they’ll have a headache maybe starting very shortly after or a fair bit after their, sort of, paralysis. But no, it can be quite confusing.
Dr Katy Munro [00:05:23] The other thing about the hemiplegia is -because normally we would think that the aura would disappear within 60 minutes, but with hemiplegic migraine, it can go on for a number of days. And I’ve certainly seen some patients who, once they get that weakness down the right side of their -or the left side of their body, it really does impact on them because they can’t function again properly in the way they’re moving for two or three days.
Dr Jessica Briscoe [00:05:48] Yes, I’ve definitely seen that. But we’ll talk about- we will talk a little bit more about when to seek help because we mentioned when with aura, when it persists, visual aura, when it persists for a long time. Similarly with hemiplegic migraine, we often have quite specific- well, we often have quite specific guidance on when people should seek help about it, because, you know, it can be quite scary, especially the first time you have this sort of episode, if you’re losing power on one side of your body, there are lots of things that we worry it could be.
Dr Katy Munro [00:06:20] Absolutely.
Dr Jessica Briscoe [00:06:21] Just one more thing about the definition of hemiplegic migraine. The thing that we often get asked about is whether it’s, we know that migraine’s hereditary, but whether it’s a genetic form of hemiplegic migraine. And there are actually two types. There’s familial hemiplegic migraine, which is inherited and gene related and sporadic hemiplegic migraine. Now, the genes that are involved, I can never remember exactly which letters is it, Katy, can you?
Dr Katy Munro [00:06:51] Well, I’ve cheated by writing them down. We know definitely there are three genes and possibly more. And it’s a bit like alphabet soup so they’re called CACNA1A, ATP1A2, SCN1A and I’m not even going to go into the other ones. So I think it’s basically a gene mutation that causes over excitability of the nerves. But it does seem to be a very specific gene that gives you this kind of familial hemiplegic pattern. And the other thing about familial hemiplegic migraine is it -usually has to be in two or more members of the family to be counted as that. So it’s really, really worth asking about family history of migraine, which we tend to do anyway, don’t we?
Dr Jessica Briscoe [00:07:42] Absolutely, yeah. As we said, migraine is generally, we know that all migraines gene related. It’s just the hemiplegic migraine. We have been able to actually identify some of the genes.
Dr Katy Munro [00:07:53] Yeah. And another interesting fact, it’s an autosomal dominant for all of you genetics lovers who are listening to the podcast. Sporadic hemiplegic migraine seems to be just a mutation that occurs in one person. So it hasn’t occurred in previous members of the family. And that is certainly something that we see as well. But just because it is a genetic condition doesn’t necessarily mean that people need to go and have gene testing. The times that we tend to do gene testing is when people are studying, you know, research purposes and looking into it and trying to find out a little bit more, because, of course, by studying genes, we can sometimes find new pathways for treatments. So that’s a major use for that.
Dr Jessica Briscoe [00:08:39] As you said, we don’t actually differently treat each type of- you know, we don’t treat familial hemiplegic migraine differently to sporadic hemiplegic migraine. But it’s more for informing us in our research about, you know, how the genes develop and if there are any changes in that essentially. Perfect. Should we go on to symptoms next, Katy?
Dr Katy Munro [00:08:59] Yeah.
Dr Jessica Briscoe [00:09:01] So we have talked a little bit about it. So the, as we said, the symptoms tend to be weakness, motor weakness or paralysis of the arm, leg, face or both, but can be confused with people having other forms of aura where they get that pins and needles, or some people sometimes describe as numbness, where people feel that they can’t lift up their arm or leg or hand or if they get it in their face, too. So generally speaking, I mean, this is something that we said, as we said, lots of over eager trainee medical trainees tend to sort of say ‘it’s hemiplegic migraine’ and a senior will come along and say, ‘no, they’ve got a normal examination’. So it is quite an important distinction. But as Katy said, the other aura symptoms can be present like visual aura, speech disturbances. The pins and needles can be there as well as the weakness and confusion and also mood changes.
Dr Katy Munro [00:09:57] Makes it even harder then doesn’t it really if you’ve got this whole combination.
Dr Jessica Briscoe [00:10:02] Absolutely.
Dr Katy Munro [00:10:03] But of course, the other thing, which is very alarming, is if people think they’re having a stroke, because that’s what you were touching on earlier, isn’t it? And that’s one of the main things that we would say if you’ve never had this kind of symptom collection before and you’re really feeling that you can’t move either your arm, leg or your face feels that it isn’t working properly, then you do need to get medical help really quickly.
Dr Jessica Briscoe [00:10:30] Absolutely. Even if you have another form of migraine. So I’ve certainly had patients who’ve had migraine with aura who’ve developed hemiplegic migraine later. And, you know, they may have gone to hospital and people have said, ‘oh, this is hemiplegic migraine’. They still- people still need to have the full set of investigations. So this is actually one of the few times where I say, you know, we did our ‘When should we do a scan? Do I need a brain scan?’ episode. People need a brain scan and they need to be seen by the stroke team just to make sure that this isn’t a mini stroke or a stroke, essentially.
Dr Katy Munro [00:11:05] Yeah. So important to make sure that we know exactly what we’re dealing with when we’re trying to manage people with this sort of condition and not miss something else.
Dr Jessica Briscoe [00:11:16] Absolutely.
Dr Katy Munro [00:11:17] Well, other the other symptoms I’ve read about, but I haven’t come across. One of them is fever. Have you come across that?
Dr Jessica Briscoe [00:11:24] No, I’ve read about that too. But I have to say again if one of my patients had told me- came to me and said that they’re having their hemiplegic migraine and they have a fever. I personally be saying to go to A&E as well or getting them assessed because I tend to associate fever with things like meningitis, which is obviously another really concerning thing. So, it possibly is an associated symptom, but if it’s the first time it happens alongside some of these symptoms I’d probably get that checked out too. Do you agree?
Dr Katy Munro [00:11:59] Yeah, I really do. Yes. I think if you are getting fever, I’d really want to be sure that other things have been excluded. I wouldn’t be wanting people to stay at home going, oh, it’s just my migraine. The other one is, as I mentioned before, impaired consciousness, sometimes even leading to coma. Well, of course, if somebody collapses and it is a hemiplegic migraine that leads to coma, I would still want them to be in hospital. I don’t want people to be hanging around at home with major disruption and impact on their health like that. So if in doubt, get it checked out is our message really, isn’t it?
Dr Jessica Briscoe [00:12:37] I like that it’s a bit of a poem there, Katy.
Dr Katy Munro [00:12:41] You know me, always poetic. So coming on to management and so obviously, because this is a type of migraine and we tend to say all the same things that we would say for anybody with migraines. So first of all, make sure you’re eating regularly. Don’t leave long periods of time between meals. Make sure you have a nice even blood sugar level. Get to sleep at the same time, wake up at the same time, routine, routine, routine, all of those kind of things. And then the normal kind of treatments that we use, like the nonsteroidals or aspirin or the anti vomiting tablets that we’ve talked about in previous episodes. But then usually for an acute migraine, we would say try a triptan. And we’ve done a whole episode on triptans. But there’s been a bit of controversy about triptans, hasn’t there, Jess?
Dr Jessica Briscoe [00:13:32] Absolutely. And I think it’s a question that we’re always debating amongst ourselves. Every time I see headache specialists, someone asks about hemiplegic migraine and triptans. I mean, I’ve rarely been to a meeting where that doesn’t happen. And it’s because of that historical feeling about what happened in aura and particularly in hemiplegia wasn’t it. That there was a lot of- that all aura was caused by vasoconstriction. So constriction or tightening of those blood vessels in the brain.
Dr Katy Munro [00:14:05] Yeah.
Dr Jessica Briscoe [00:14:05] Which would obviously cause an increased risk of stroke. And there was a worry that triptans could also increase the blood pressure or increase that risk of stroke even further. And that’s why it was thought not to be- that it shouldn’t be used in hemiplegic migraine. Now, that’s largely been debunked as a theory as the cause of hemiplegia. We know that actually, I think we’ve talked about this before, but aura is caused by a changing of the charge across the nerve cells, the neurones, across the cortex, that big bit, that big bulky bit at the front of the brain and with hemiplegic migraine that the cortex, the part of the cortex that is affected is the motor cortex. And that’s not to do with the vessels. So generally speaking, the consensus is that triptans can be used, but they actually don’t help the aura. And we’ve said this before, so they don’t help the weakness. So if people are having a significant headache, a lot of people with aura some say ‘actually the headache isn’t my big problem, it’s the aura part’. My main advice is that if the headaches bad enough, the benefits of using it outweigh that supposed risk. But actually, if you’re not having a particular headache, then I wouldn’t necessarily jump to a triptan, would you agree?
Dr Katy Munro [00:15:28] Yeah, I think that’s right. And I think, you know, we use this phrase, what is your most bothersome symptom? Increasingly don’t we? and I think that’s part of our bigger message, which is that migraine is not just a headache. And of course, if you’re getting a severe hemiplegic problem: you can’t walk properly. Some people even fall to the ground because it’s it’s so intense. And then you go on and have a headache. To be honest, the headache is the least of the impact on your life, isn’t it? So it is frustrating that the triptans, they’re wonderful for many people for the headache, but they aren’t really that useful in aura. So I guess we probably go back to those sort of preventative strategies. So that might be all the lifestyle things that we’ve mentioned. It could be some of the supplements, sometimes magnesium or riboflavin or coenzyme q10 have helped some people prevent their migraine attacks. And there’s an episode of the podcast earlier that we talk about those a bit more. And then all the normal preventer’s.
Dr Jessica Briscoe [00:16:33] Now I tend to have a bit of a lower threshold for starting preventer’s in hemiplegic migraine. Do you?
Dr Katy Munro [00:16:38] Yes, I think I would.
Dr Jessica Briscoe [00:16:39] I do. Well, this is what I’ve always said. So when we did our episode on preventative treatments as well, we talked about the fact that the guidance actually says if you’re having- typically they talk about attacks, not headache days, which isn’t always that helpful. But they say if you had more than four attacks per month, but actually they do also say or your attacks are particularly disabling. Now, this is one of those things which counts as a particularly disabling attack. And I do the same with other types of migraine. If someone’s having one attack, which knocks them out for a lot of the month or a whole week at a time. And it’s really a problem. I will give the preventative. And it’s exactly the same with hemiplegic migraine. If you’re having a few days where you can’t- you’re confused or can’t move part of your body. You know that, to me, warrants a preventative.
Dr Katy Munro [00:17:31] I quite agree. Absolutely. Yeah. So medication to prevent these kind of attacks is most of the usual things. But one particular one flunarizine seems to have been shown to be helpful. But the problem is getting that, isn’t it? So GPs struggle to get that because it’s not licenced in this country. But I have heard of people getting it through their consultant neurologists in secondary care. It’s a bit easier for hospitals to get it.
Dr Jessica Briscoe [00:17:58] And also in our ‘migraine around the world’ episode. David, one of the Davids was talking about-.
Dr Katy Munro [00:18:06] David Watson, in Scotland.
Dr Jessica Briscoe [00:18:08] Talking about how in Scotland they’ve actually got a special arrangement with their trust about how to get it. So there are areas of the country that you can get flunarizine. It also it’s one of the ones because I don’t know if we did mention it, but children can also get hemiplegic migraine.
Dr Katy Munro [00:18:25] Yes, definitely.
Dr Jessica Briscoe [00:18:26] I remember reading a- watching a presentation on how to manage it, and flunarizine is actually very helpful. It’s first line for children as well. And but again, I think you’d certainly- that’s not something that most GPs would be happy just initiating. It’s one that you’d really need to see a consultant for.
Dr Katy Munro [00:18:43] It needs a specialist, really, doesn’t it? I think any migraine can start at any age, really, can’t it? And so I’ve definitely in our centre seen a couple of quite young children who’ve had hemiplegic migraine and one of them had no family history that I remember. But yeah, it’s definitely something can occur at any age.
Dr Jessica Briscoe [00:19:10] There was a claim as well about whether- we were saying that all the different preventatives can be used. But there was a little and again, I think this might be a historical thing about propranolol as well, or beta blockers generally.
Dr Katy Munro [00:19:24] Yes.
Dr Jessica Briscoe [00:19:25] Now it’s again, because of the- I think it was because of that constriction of the blood vessels again, they said that- I’ve read a few papers where they said propranolol can’t be used. Now, I hadn’t actually come across this when- I have to say I don’t- and I think we’ve talked about this before, but I don’t use propranolol a lot because we tend to see people that have already tried it. And so but I don’t know whether you’ve heard about that, Katy?
Dr Katy Munro [00:19:50] I hadn’t until researching for this episode, really. And it’s popped up in the retinal migraine research that i did as well. So I think I would probably say just make sure that you talk to a specialist and obviously anybody with asthma, we wouldn’t be using a beta blocker like propranolol or any of that in the same group. So it probably wouldn’t be my first line. But I wonder whether that’s also that, you know, harking back to this idea that migraine was due to vasoconstriction, narrowing of the blood vessels, whereas actually we know it’s more cortical spreading depression that rolls out over the surface of the brain. So I think, you know, with a lot of these things doctors can have different opinions. So it’s checking on what’s the up to date information and research is always going on into these things all the time. So it may be that that would be able to be used in the right place in the right time. I think you can also use the usual things like Botox or the CGRP medications, not specifically- they haven’t specifically looked at hemiplegic migraine, but it’s a variant of migraine. So it certainly would be something to think about as a preventer. And I did have a patient who responded very well to acupuncture during an attack. It was really transformative. She didn’t do it on herself. She worked with somebody who was able to help her. But I’m not aware of any studies on acupuncture and hemiplegic migraine specifically.
Dr Jessica Briscoe [00:21:23] I think it’s difficult. This harks back to the fact that research in migraine, there isn’t a huge amounts. And also this also means- we talked about this in our vestibular migraine episode. When you’re getting to these really specific groups of migraine, the numbers are a lot smaller. So they find it hard to recruit. So it’s sometimes difficult to get a good quality study on these types of treatment. And obviously, we also discussed it in cluster headache where it’s a real problem, too. So I think they do try to get some data on this, but it can just practically be difficult.
Dr Katy Munro [00:21:59] We need more funding for research for migraine as well, for such a debilitating and common condition. It’s really under funded from a research point of view, isn’t it?
Dr Jessica Briscoe [00:22:09] Yes. And I also wonder if actually if there were more good quality headache- sort more headache specialists actually in the country, if we had more people being diagnosed with it appropriately and treated better, you’d probably be able to recruit a lot more as well. So you’re right it’s all down to money. We need more money for migraine.
Dr Katy Munro [00:22:28] Well, that’s a very good point. I thought having gone on to money, I might just do our little intermission of begging because we’re back with the podcast. As a charity, we are managing to keep going throughout the COVID lockdown and beyond. And we are very busy seeing lots of patients who haven’t managed to go and see their NHS neurologists. We’re delighted that people have found us, but we do need your help to stay functioning as a charity. So anything that you could donate to the podcast and the links will be at the end in the blurb. So please, please do give as generously- give us some money generously so that we can keep going. Should we go on to retinal migraine now then, Jess?
Dr Jessica Briscoe [00:23:14] Yes please, absolutely. So this one is another slightly confusing one. I often find that people- people will use terms retinal, ocular and well, not so much aura, I think I tend to use aura more, but people who use the terms retinal and ocular interchangeably. And it can be I think when I first started doing headache medicine, I used to get ever so confused about the difference between the two. And it’s something that I think we talk to the people that we’re training a lot about as well. But essentially, ocular migraine is a very old fashioned term that I don’t really like. I prefer to talk about migraine with visual aura. Ocular migraine is essentially visual aura, and people tend to describe it, but not exclusively, when it occurs without the headache. But actually I tend to find ophthalmologists use it quite a lot because people do tend to get sent to the ophthalmologists and they’ll say ‘it’s ocular migraine’ and we’ll sort of spend a lot of time explaining that that’s visual aura. But retinal migraines is actually different, isn’t it, Katy?
Dr Katy Munro [00:24:20] Yes, it is. It’s rare, pretty rare, but it’s a specific- it causes a specific difficulty with vision, but it’s only in one eye. And that’s the key distinguishing factor between retinal migraine and migraine with visual aura. So visual aura, if you alternate your eyes while you’re having the aura and shut one and then shut the other one, you will still see the aura in both eyes. Whereas in retinal migraine, the visual symptoms should only be present when you’re looking through one eye. So if you look through one eye and close the other one, you see the visual disturbances and then when you close that and open the other one, you don’t. So it’s very specifically a mono ocular change.
Dr Jessica Briscoe [00:25:09] But I think that can be quite difficult to determine as someone who gets aura. I was just thinking about that. Poor Katy was watching me closing one eye then the other then.
Dr Katy Munro [00:25:19] Yes, She’s been winking at me.
[00:25:21] This is the problem with doing the podcasts virtually, you forget that someone’s actually looking at you. I actually think in the middle of a migraine, if you’re having aura, I think that would be quite difficult to ascertain whether it’s in one eye or two when you’re also probably feeling a bit sick, a bit disorientated and confused. And I can imagine that that’s possibly one way it’s very difficult to identify.
Dr Katy Munro [00:25:43] Yeah. And also the migraine with visual aura, the aura, the visual aura maybe more predominant in one eye than the other. But if there’s any evidence in both eyes, then it’s visual aura. If there’s completely nothing, when you shut one eye and the other one is completely unaffected, then it’s retinal migraine. So I think that’s quite interesting, actually. And I had a journalist phone me a while ago and ask me all about it, and he thought that he had retinal migraine, but in fact, he had visual aura. So that was useful. OK, it is quite important, though, to distinguish between the two. And that is again coming back to what we were saying about those particular medications that have had controversy with hemiplegic migraine. And the same ones are- there’s a bit of a question mark over them with retinal migraine, and that’s triptans, ergotamine and beta blockers. And again, this is because we are not 100 percent sure whether the symptoms are coming from some sort of vascular disturbance in the retina or whether it’s cortical spreading depression, but only affecting one eye. And I think the jury’s out on that. I couldn’t find a definitive decision about that. And again, I think because- so retinal migraine bouts tend to last from five to 20 minutes and then go away again. And they may or may not have headache, but they’re quite transient, even though they might be quite frequent throughout the day. So if they’re coming and going quite quickly, again a triptan isn’t going to be that much help.
Dr Jessica Briscoe [00:27:17] And also it doesn’t- it doesn’t tend to help those additional extra symptoms that you get with migraine. It tends to be better for the sickness and the headache for those potential peripheral sensitisation type symptoms, not the sort of extra ones caused by that sort of- Caused by the migraines. And also, as you said, if triptans lasting four hours and you get one after five hours, it’s not going to particularly help.
Dr Katy Munro [00:27:46] Yes. Yeah, I found a study with some interesting figures and it was saying that 50 percent of retinal migraine sufferers had complete loss of vision in one eye. So obviously that is really quite concerning. And we would advise anybody who was getting that sort of symptoms to make sure they are getting checked out by an ophthalmology specialist.
Dr Jessica Briscoe [00:28:12] Well, yes, it’s also important to try and rule out other kind of concerning stroke like symptoms, isn’t it, or causes of blindness.
Dr Katy Munro [00:28:19] Yeah, and there’s a thing called Amaurosis Fugax, which is a beautiful name, I think. But it basically refers to something which is almost called a stroke of the eye, which is where micro clots can go through the back of the eye and give transient loss of vision. That’s really important to get that checked out. And there are- there’s a whole list of other things to exclude: increased pressure in the- intracranial pressure and obviously, giant cell arteritis, which can cause inflammation and sometimes pain around the temples athat’s very important because with all of these other conditions, there is a possibility of them causing permanent visual loss. So it’s very important to get that checked out. And there are various other ones, inflammation of the optic nerve and things like that, which can aggravate. 12 percent, going back to my study figures, 12 percent of people reported that they didn’t have complete loss of vision and 20 percent said it was just blurring. And then 13 percent had little blind spots or scotoma, as we call it. But about 75 percent of patients or more had a headache on the same side as the visual disturbance within an hour. So it is quite common to get the headache with it. And but not everybody gets that. So there was a family history of migraine in 50 percent. And this goes back to what we were saying before. Migraine is a genetic neurological condition. So we’re never surprised when we hear that there’s a family history, are we?
Dr Jessica Briscoe [00:29:59] We mentioned about treating it. How do you treat retinal migraine because it’s quite difficult, there are things that we’re not allowed to use that we use for migraine with aura. So well we said, not the triptans, but are we okay with things like aspirin and ibuprofen and things like that?
Dr Katy Munro [00:30:17] Yeah, yes. I think the normal things, again, similar to hemiplegic migraine, really. So we basically encourage people to do this healthy lifestyle things, and particularly with retinal migraine and I mean, I’m always urging people to give up smoking anyway. But giving up smoking is really important. There aren’t any specific guidelines of anything different that we really do for retinal migraine. But I think some people have considered giving a daily dose of aspirin, and this is something that people have tried. The other thing that there’s a bit of a question mark is about oral contraceptives. And of course, we would be very careful with combined contraceptive pills, with oestrogen in them in anybody that was getting any kind of aura, we wouldn’t be using those, would we?
Dr Jessica Briscoe [00:31:07] No not at all.
Dr Katy Munro [00:31:07] But I think that’s really the main thing. So the triptans, the ergotamine infusions, which is widely used in some parts of the world, I think in New Zealand. And we were speaking to Dr. Pyari Bose about that. And they use it quite a lot over there. And I’ve certainly had a couple of patients here told me that they’ve had it and that would be not indicated in retinal migraine. But other than that, largely the same in terms of abortive therapy or preventative therapy. Yeah, so two interesting variants of migraine and they all come under the main heading of migraine. But they have their distinctive features, don’t they?
Dr Jessica Briscoe [00:31:49] They do.
Dr Katy Munro [00:31:49] Do you think that somebody could start with one type of migraine and then that would change as they go through their life? Do you find that’s a thing?
Dr Jessica Briscoe [00:31:58] I do, absolutely. And I often warn people, especially if I see them when they’re young. Well, I warn everybody that migraine can change it is very variable because I think that’s one of the big myths that migraine stays the same- when you get migraine, you always have the same one. I do see people who’ve never had aura who develop aura later on in life. I see people who’ve had aura who suddenly don’t have aura. You know, it does change. And I have certainly seen people in their thirties quite a lot recently, but a lot of people in their 30s who suddenly get hemiplegia and, you know, having had different types of aura before. And I think the key is that if it’s anything new and worrying, always seek medical advice. Because I remember one of my parents, my mum, once told me that migraine is the great mimcker. It essentially mimics usually stroke symptoms, which can be really worrying. And actually, if in doubt, you are better to seek medical advice and make sure that it isn’t because you’d rather be- you know, it’s better off having migraine and then having something that’s non reversible and potentially life limiting or life threatening, as disabling as migraine can be. We’d rather it was that than something that will kill somebody and has been missed. So.
Dr Katy Munro [00:33:15] Absolutely.
Dr Jessica Briscoe [00:33:16] Please, please. If it changes, speak to your doctor or head to A&E to get it checked out.
Dr Katy Munro [00:33:22] Yeah, I completely agree with that. And thanks for listening.
Swati [00:33:31] Hi, today we have Claire joining us on our Heads Up podcast. Claire, good morning. Thank you for joining us today.
Claire [00:33:37] Hello, thank you for having me.
Swati [00:33:39] Claire, we understand that you have been diagnosed with hemiplegic migraine. When did this all start?
Claire [00:33:46] It’s been just over a year since it started. And it was a bit of a shock, to be honest. I’ve never had anything like it before. I had just broken my leg while I was biking with my children to school. And that’d it happened a week earlier and it followed. It was a week later. I was on crutches and it all started from there really.
Swati [00:34:11] So did you have migraines before that? Did you have any headaches before?
Claire [00:34:15] Really no. Very rarely had headaches and I hadn’t really had anything kind of in my previous history or as a child or even really in many family members having any headaches. And even when I had my- the start of my migraines, I didn’t have headaches and I still rarely have headaches, which makes it a bit tricky to explain sometimes.
Swati [00:34:37] Yeah, no, absolutely. And so you got diagnosed with hemiplegic migraine. What are the symptoms or what’s a typical hemiplegic migraine attack, if you could tell us- our listeners about that?
Claire [00:34:49] Well, for me, my first attack, I suddenly felt absolutely exhausted, like I could fall asleep that second. I was standing up and making some dinner for my children and I thought I might pass out, which again, is not something I’ve had before, but it felt like a wave. So I had to get down onto the floor with my crutches and lie down. And I lost my speech, stopped working so I could still kind of think of the words to a certain extent. But my mouth stopped working. It all- I could feel the muscles all drop, my leg went weak, which was part of the reason I was getting down onto the floor because it was my good side. So it was the one leg I had usable at that time and my arm went numb and I couldn’t lift it or move my fingers. So we thought it looked like a stroke. And having had no experience of anything like it, we were both my my husband was there. He came downstairs and he was really worried and I was really worried. So he called for an ambulance and my children, we got a friend to come and collect them because the ambulance took about 50 minutes to come. By the time the ambulance came, I was able to move my hands again and I was still lying on the floor. But I was violently shaking, freezing cold, violently shaking my husband had but duvets and things over me. And the ambulance team said they didn’t think it was a stroke, but they took me into the hospital to get checked over. And I got better so it was about- it was about 40 minutes, probably the first time that I’d lost feeling for in my left hand side.
Swati [00:36:50] That must have been really scary, considering you’ve never had anything like you’ve never had any sort of you know, people tend to sometimes have numbness, maybe not like a full blown attack, but sometimes they have slight numbness. And you’ve never had any of those symptoms ever?
Claire [00:37:07] I’ve never had any of those symptoms. And it felt like I was completely out of control with my body. And it felt really, really wrong. Like I felt like something was really, really wrong with me. And having gone to A&E. When they looked me over, they thought it might be a TIA, which I hadn’t really heard of before either. But I believe it’s like a stroke in that you have a clot pass through the brain. But it can- it passes through and it’s you know, the effects are temporary. I’m not sure, that was my understanding. So they sent me back home again and said they would request for me to go to a TIA clinic to get more- to look into it more. But I actually got home. So that was about two in the morning we drove back home. We collected the children from the friends at seven, got those in school apart from the youngest. And my husband came with me to take her to playgroup because I was feeling really vulnerable and I was obviously still on crutches. And it happened again the next morning at 11am so it was really tricky just trying to get used to that. This- the fear of it, really.
Swati [00:38:23] No, absolutely. It does. It does sound quite scary. So do you still- do you still get similar attacks, when you get a hemiplegic migraine attack, is it still similar?
Claire [00:38:34] It is similar. I don’t always have the full blown attacks where I get complete sensation loss in my face and my arm. But I think the last one I had like that was probably in March. And it’s still just as terrifying to be honest. It’s only been a year that I’ve had this. And the other aura related things are probably the things that inhibit my life most at the moment. But the- it still feels really shocking. The last one I had in March, again, it was my full left side went and then it came back after 20 minutes and then my right side went, which is again, just bizarre. And I have no control over it. And yeah, it feels really scary.
Swati [00:39:21] Are there any specific things that you feel like that might be triggering it? Is there something I know that- I mean, I get migraines and I know that a lot of times I’ve no idea what triggered it. Like you probably- you probably have the most perfect day without doing anything at all that could trigger a migraine. And that’s probably the days when I get a migraine so I can never sort of find out what a trigger is. But is there anything you particularly feel that might that might be triggering it?
Claire [00:39:53] I spent nine months with pen and paper and writing down lists of foods and times of day and, you know, carbohydrate filled meals and all these things. And it was driving me mad because I was filling out all these lists. And you find online and doctors talk to you, even GPs can talk to you about lists of trigger foods and things to avoid, but the lists are endless. So I found that red wine I can’t drink at all and caffeine I can’t have. But actually, other than that, I couldn’t pinpoint anything. So talking to Dr. Briscoe at the National Migraine Centre was amazing. She talked to me about the pattern and the curve of migraines and how you, you know, you really crave something salty or you’re really craving food. But actually the migraines already started. That’s because of the the vagus nerve and the stomach emptying system has stopped working. And as soon as she talked to me about this, I could absolutely see it. So I can now tell I’m getting a migraine. I feel starving, hungry. And I know that’s because my blood sugars dropped, but that’s because I know it’s coming anyway. It’s already started. So even if I have carbohydrate filled meal or citrus or something, I know it’s not that, the migraines already started. So for me, the only things that I, I can, I know impact it on my hormone levels, which is a bit frustrating to try and do anything about, and red wine and coffee, which obviously I can avoid. But the hormone level, I’ve tracked my periods now using an app called Flow and I can see around ovulation. So a day or two before ovulation I get really a risk of migraines. And a couple of days before my period and through my period, I’m really at risk of migraines. And sometimes when there’s some medication that’s working, I don’t really- they don’t really culminate in migraines. I can feel like I’m vulnerable to them, but they don’t really- I don’t get a huge amount of symptoms, but then when the medication’s not working. Then I have two out of every three weeks that are just full of migraines.
Swati [00:42:06] So these symptoms that you mentioned, do you get a headache along with it? Because I know that there are some people who would get these symptoms but might not actually get a headache. Do you get a headache and the symptoms?
Claire [00:42:17] I generally don’t get a headache, which I’m really grateful for. And I know people have a lot of difficulty with pain management, so I don’t have that. I get nausea, I get quite bad nausea. But it’s the thing that I really struggle with is my cognitive skills. So I can tell when I’m- I was having a music lesson, for instance, and as soon as the migraine was starting, I couldn’t read music anymore. And so it was just, you know, an instant signifier or there are times where I can’t tell the difference between left and right or I mean, I’m very careful about driving now. If I feel like I’m getting a migraine, for instance, I could tell I was trying to read the satnav and find my way and I couldn’t compute the directions at all. So I ended up getting totally lost on routes I know really, really well. But there’s something that impairs the cognitive abilities there. And I’m studying for a Masters at the moment and it makes it very, very hard, if not impossible.
Swati [00:43:24] Lastly, just to ask you. What’s your current management like, what are you doing currently to manage this condition medically?
Claire [00:43:36] Medically I’m taking magnesium and I’m currently taking noratriptyline. So I’m just upping the doses to trial this and see whether this will be effective for me, because it hasn’t- it’s not currently doing a great job at the moment. But there are lots of different things that I’ve spoken to Dr. Briscoe about, including the, I can’t remember the name of it, the machine that’s like a is it Cefaly.
Swati [00:44:08] The Cefaly device? Yes.
Claire [00:44:09] Yes. So I’m looking forward to trying that. Um, and yeah, the next step is candesartan and some of the other medications, but not beta blockers for me, because I feel my- the migraines lower my heart rate. So I’m just trying different, different paths. So I’m ever optimistic, hoping to find something soon.
Swati [00:44:34] Thank you so much, Claire. Thank you for sharing your story with us.
Claire [00:44:37] Thank you. Thanks so much for having me.
Dr Katy Munro [00:44:42] So next time we will be talking to a couple of sleep specialists about the relationship with sleep and migraine. So tune in to that episode in a couple of weeks. Thanks for listening.
[00:44:59] 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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