S2 E3: Cluster Headache

Cluster Headache

Series 2, episode 3

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Transcript:

Speaker 1 [00:00:00] Did you know cluster headaches are one of the most painful conditions a person can get? Treatment can be lifesaving. 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 [00:00:22] Hello and welcome back to Head’s Up Podcast. I’m Dr. Katy Munro, and I’m with Dr. Jessica Briscoe.

 

Dr Jessica Briscoe [00:00:28] Hello.

 

Dr Katy Munro [00:00:29] And Professor Paul Booton.

 

Prof Paul Booton [00:00:30] Hello.

 

Dr Katy Munro [00:00:31] And we’re going to be talking about cluster headache. This is a different type of headache from migraine, which is what we’ve talked about mainly in the episodes up to now. And there’s an awful lot of things which people ask us and people are confused about which we want to cover in this episode. So first of all, I’m going to ask Jessica to talk about who gets it.

 

Dr Jessica Briscoe [00:00:53] So cluster headache is something we see quite commonly, but it is a much rarer form of headache than migraine, which is very, very common. Cluster headache is about seven times more common in men than it is in women, which is very different to migraine. But actually, essentially, I think the average age of onset for cluster headache is 30. But we’ve seen people younger. I mean, I’ve seen children, we’ve seen adolescents with it. And we can see people who are older as well. As I said, it is a fairly rare headache. It’s very distinctly different to migraine. So it feels different, has different characteristics. And I think we’re going to get Paul to talk a little bit more about that. So tell us a little bit about what cluster headache is.

 

Prof Paul Booton [00:01:36] Well cluster headache is a very, very nasty headache. If you’ve got migraine, you’ll know how nasty it is. People with cluster headache think the migraine people are lucky. Cluster headache, one of the features about it, it is always one sided. Now, migraine is often one sided, but it’s often both sides. There’s lots more variety with it. Cluster headache is always on one side. It’s relatively short lived compared to migraine. Most attacks are around 40 minutes, although they can be anything from about 15 minutes to 3 hours. You can also get several attacks of it in one day. And between those attacks, you’re fine again.

 

Dr Katy Munro [00:02:15] Yeah. I had somebody the other day who was telling me that they were getting eight attacks in one day. And very often the attacks are occurring, starting in the middle of the night. So it used to be called the alarm clock headache.

 

Dr Jessica Briscoe [00:02:28] Yeah. And it’s also- the interesting thing I always find about cluster headache is that people tend to get them- they know when they’re going to get it. They say they’ll get it at this time, often at night. But I’ve seen people who will get it first thing in the morning as well, and then they’ll get it a few hours later and then a few hours after that. But there is that sense of, ‘I know if I’ve started a bout’, which is what we call the cluster headache period of time. When they’ve started a bout, they will know that they’re going to get three that day and often they actually seem to get better as the day goes on I find. They’re shorter or a little bit less severe.

 

Dr Katy Munro [00:03:03] So we talk about episodic and chronic cluster headaches. So episodes of cluster can come on and last for a number of weeks and then go away. And the person can be fine for anything from weeks to months to even- I’ve seen a couple of people who didn’t have them again for a couple of years. But chronic cluster headache is more relentless, isn’t it, coming on a daily basis for months.

 

Dr Jessica Briscoe [00:03:27] And I think the other thing that makes it distinctly different to migraine, I can’t remember whether you did say this or not, but the fact that typically when people get the symptoms, so that one sided symptom, they get an episode of agitation with it as well. So people with migraine tend to want to be very still and people with cluster tend to- I mean, agitation is probably quite a mild way of putting it, but they tend to sort of pace about. I mean, you’ve seen people- we’ve all seen people who’ve been banging their head against a wall. You had someone recently who was pulling parts of their body out.

 

Dr Katy Munro [00:04:01] Yes. They wanted a different pain so he was trying to make a different pain, different area, so that you wouldn’t feel the cluster headache. I don’t think it worked particularly well, but yes, pacing around and being agitated. There’s some good videos aren’t there, on YouTube.

 

Prof Paul Booton [00:04:16] Yeah, if you don’t believe us, look at the videos on YouTube and it’s quite dramatic the way people behave. And if you’re a migraine sufferer, you can see at once how different, what cluster headache people do from what migraine people do because they want to sit as still and quiet as possible. And cluster headaches don’t do that.

 

Dr Katy Munro [00:04:34] I think as a GP in surgery it’s one of the most useful questions to ask people to differentiate between the two. When you get your headaches, do you want to stay still or do you feel that you can’t stay still and you’re pacing up and down?

 

Prof Paul Booton [00:04:49] I was reading an article earlier today about cluster headaches in children, and children also get this restlessness and irritability with it. And in fact several of the people in the study I was reading had been expelled from school because they were being a nuisance, as the school saw it.

 

Dr Jessica Briscoe [00:05:05] I’ve definitely seen that actually with an adolescent who had been misdiagnosed as migraine, which commonly happens I find in adolescence, and he was seen as being troublesome during his cluster bouts because they’d happened in the middle of school and he’d need to get out of that room. They just thought he was a troublemaker.

 

Dr Katy Munro [00:05:24] The other thing, of course, that goes along with the cluster headache attack, which is very useful to ask about, people describe that they get this redness of their eye on the same side as the pain. A watering eye, maybe a stuffy nose. And we call these the autonomic symptoms.

 

Dr Jessica Briscoe [00:05:42] I mean, they can occur in other headaches, but they are kind of a key feature for cluster headache, I find. You can also get aura in cluster headache, but you’re much less likely to as well. I think the key thing to also note, is that you can have cluster headache and migraine. They can coexist. I’ve definitely seen that before.

 

Dr Katy Munro [00:06:02] I’ve certainly had a number of patients who’ve come in seeing me about migraine and then developed cluster headache as well. Because migraine is very common and so sadly, some of the people who get migraine also get cluster headache, but you can have it without having migraine. And you can have a family history, I think of cluster headache.

 

Dr Jessica Briscoe [00:06:21] They say it’s a different genetic link. I mean, this actually kind of brings us nicely onto what we know about cluster headache. So what causes it? And again, Paul, as our professor, might be a good place for you to tell us, you know, what we know about the causes of cluster headache?

 

Prof Paul Booton [00:06:40] Well, we know that it’s because of processes going on in the brain. If you use an ordinary brain scan for people with cluster headaches, as indeed with migraine, you won’t see anything at all wrong with it. There’s nothing physical to see. But if you use these sophisticated scans that we can now do, which look at how chemicals pass through the brain, how the neurotransmitters are activated in the brain, you can see different areas of the brain which light up during a migraine attack or during a cluster attack, and the areas of the brain which light up a different in those two. So it’s yet more evidence that these are two separate conditions. They’re different arms of the same sort of thing, but they are actually, in important respects very different.

 

Dr Katy Munro [00:07:26] That’s quite a lot of research going on into cluster headaches and especially this sort of periodicity of it. So not only are we seeing patients who say ‘ oh, I always get it in the night or I get it at certain times of the day on a regular basis’. But also it seems to be more common on this sort of seasonal periodicity. So people might get more attacks in the spring and in the autumn around the equinoxes.

 

Dr Jessica Briscoe [00:07:52] Yeah, and again, I think that sort of helps with- we all think it starts in the hypothalamus, the sort of mid-part of the brain, and that whole periodicity to it, this sort of annual rhythm to it kind of highlights that. Well, it kind of puts a bit of validity to that theory because they also think there’s a link with melatonin levels as well.

 

Dr Katy Munro [00:08:14] Yeah. And there are some chemicals in the hypothalamus that induce sleep, aren’t there. Very much involved in sleep. And I know there’s a lot of studies going on into looking at the mysteries of sleep. How we can use that in therapies maybe in the future.

 

Prof Paul Booton [00:08:31] Let me put in an advert at this point for keeping a diary. Now diaries are fantastically useful in diagnosing various headache conditions, but in cluster, one of the things we rely on a lot in making our diagnosis and remember this is a clinical diagnosis, there are no fancy tests. We can’t thread people into a scanner, we can’t do blood tests to prove it. We rely on the good old fashioned medicine of listening to what the patient tells us and coming to a conclusion from that. And so keeping a diary is a very good way of very accurately spotting what the patterns are with the headache. And what we’re looking for with cluster headache are this very regular periodicity of getting attack at 3:00 in the night, 9:00 in the morning, 2:00 in the afternoon, and then that going on for maybe six weeks or something like that, and then fading away again. And that’s incredibly useful for us. So if you want to do one thing before you come to see the doctor with what you think might be cluster headaches, keep a diary.

 

Dr Katy Munro [00:09:30] I would also say get somebody to video you during an attack because everybody’s got cameras on their phones now. And going back to diaries, of course, we’ve got downloadable diaries on our website, National Migraine Centre website, but also there are various apps that people use. And just to have that combination, I really agree with Paul, that is so useful.

 

Dr Jessica Briscoe [00:09:52] Yeah. And actually, I mean, I know we talk about diaries a lot for migraine to identify triggers. Are there particularly any triggers that can cause a cluster headache bout.

 

Prof Paul Booton [00:10:01] I think really the big one that people have noticed is alcohol. Now, alcohol is a trigger with migraine as well, and many people with migraine will have noticed that. But it’s much more immediate with cluster headache. You have a drink and the headache starts within an hour, something like that. With migraine, if it is going to trigger an attack, it’s more likely to be the next day. So again, it’s quite a useful pointer for us when we’re sitting here in the clinic that we’re looking at cluster rather than migraine.

 

Dr Katy Munro [00:10:30] And if you’re not in a cluster bout you can have alcohol and it doesn’t trigger a bout to start. That’s what I understand about that.

 

Prof Paul Booton [00:10:39] That’s what I understand.

 

Dr Katy Munro [00:10:40] So once you’re in a bout alcohol is a really powerful trigger. Other triggers, Jess?

 

Dr Jessica Briscoe [00:10:47] So there’s been a lot of work about whether histamine is something that triggers it. So histamines that allergy- I can’t remember if we’ve talked about in previous podcasts because we do tend to talk about histamine quite a lot, but histamine, it’s the allergy component. So people who get things like allergic rhinitis or asthma can have high circulating histamine levels and there is thought to be a link between histamine and cluster headache. Then the other one is nitroglycerine, which I think we use- I mean, that seems to trigger all headaches, to be honest. And they often use it in studies to try and induce bouts of any type of headache.

 

Dr Katy Munro [00:11:19] And it’s used as a medication for angina.

 

Prof Paul Booton [00:11:22] I was going to say just in case everyone’s worrying, we’re not talking about is use as a high explosive, which probably does trigger headaches.

 

Dr Jessica Briscoe [00:11:28] Thank you for clarifying.

 

Dr Jessica Briscoe [00:11:29] It’s used as a little pill to treat things like angina.

 

Dr Katy Munro [00:11:34] One of the things I always ask about is smoking history, because we do know that if you are a smoker, you’re more likely to get cluster headache. But sadly, if you are a cluster headache sufferer who smokes and then you give up, it doesn’t actually make a huge difference to the cluster headache, but at least it does improve your general health almost immediately, as soon as you throw away the dreaded fags. It’s always a good idea to give up.

 

Dr Jessica Briscoe [00:11:58] Absolutely.

 

Dr Katy Munro [00:11:59] The best thing you can do for your health.

 

Dr Jessica Briscoe [00:12:01] So we’ve sort of talked about the diagnosis, the typical clinical features of it. Actually, the thing that I always find staggering about cluster headache is how long it takes people to get diagnosed. And one thing that I think is really clear, I mean the length of time for people to become diagnosed has definitely gone down over the years. I think it was about 20 years in the sixties or something like that. It’s gone down to 7 years now, which is still quite a long time to be dealing with this.

 

Prof Paul Booton [00:12:27] Yeah, it’s a long time not to be getting effective treatment.

 

Dr Jessica Briscoe [00:12:30] Absolutely.

 

Dr Katy Munro [00:12:32] But also the diagnosis is sometimes people are hedging their bets. I mean doctors I’ve seen people who’ve come in and said ‘well they think it might be cluster headache and they told me it was cluster migraine’. So I’d like to very firmly say there is no such diagnosis as cluster migraine. You can have migraine and you can have it frequently, but that’s called high frequency or chronic migraine, not cluster. And cluster headache is a completely separate thing. So if you’ve been told you’ve got cluster migraine, please come and see us and we’ll help sort out what you’ve actually got.

 

Prof Paul Booton [00:13:05] I mean, some people get migraine and with their migraine, they get a bunch of attacks which come close together. Well, that’s just one of the things you get with migraine, but that doesn’t make it a cluster. A cluster is a very technical term in this sense.

 

Dr Katy Munro [00:13:18] We tend to use words like flurry or group or non-technical terms when we’re saying that, not to confuse people.

 

Dr Jessica Briscoe [00:13:27] Absolutely. So once people have been diagnosed, there’s this whole debate. Are there any investigations? I mean, you’ve already said, Paul, that it is a clinical diagnosis. Is there anything that needs to be done to look into this further?

 

Dr Jessica Briscoe [00:13:41] Well, the only thing that it is important to do is to do a brain scan at some stage. And that’s not for the diagnosis of the headache at all. It’s just that a small percentage of people are found to have pituitary tumours. Now, the word tumour is terrifying, but pituitary tumours are in a rather different category in that they’re tiny and they can produce hormones and so they can be a nuisance for various reasons and they can be taken out or treated with drugs which cures them. So they’re not a problem, but it is important to know they’re there. So getting a scan, it doesn’t have to be a scan quickly, getting a scan within a few months of having a cluster diagnosed is important just to rule out that possibility.

 

Dr Jessica Briscoe [00:14:23] Yeah. And also I think, the other thing for any sort of medics who are listening, if anyone has any features that aren’t particularly typical of cluster headache, so things like personality changes, seizures, if the onset- cluster headache can come on very quickly. But if it is that, what we worry about, the thunderclap headache where it comes on within seconds or if they’re just not well with it just generally as some of the systemic features that you were talking about that can come alongside having that hormone produced. And if people are generally over 50 at the start of them having cluster headaches, that’s when we’d also probably advise to get a scan in case it’s not cluster headache at all.

 

Dr Katy Munro [00:15:03] What we’ve sometimes found is that people have gone onto the Internet and found out some information and think they might have cluster headache, go to their GP, get referred. But by the time the referral comes through, the cluster bout finished. And so they think, well, I’m fine now it’s going away. So that can sometimes delay getting a proper diagnosis. But there are some clinics in the NHS that have a fast access and certainly here at the centre, we try and make sure that if we think somebody has cluster headache they get booked into see a doctor very quickly.

 

Dr Jessica Briscoe [00:15:38] Because I think the thing is, although there is an element of, you have the pattern, they might come every year. I’ve seen people get them every 18 months, every two years, sometimes twice a year with the changing of seasons. When you’re just starting out in cluster headache, you don’t know what your pattern is. It’s really important to be able to have your medication that will help you get through your bout as quickly as possible. And I think getting the diagnosis and having a good treatment plan is really important for that.

 

Dr Katy Munro [00:16:07] So going onto treatments. There are kind of two things that we look at. One is the treatment of the acute episode and the other is preventing the episode from going on, trying to shorten it. And there’s also a sort of bridging therapy that we talking about. So Paul, do you want to just speak a bit about acute episodes and what we would advise?

 

Dr Jessica Briscoe [00:16:30] Yeah, so this is a terrible, terrible headache. So we want to get on top of it quickly and there are various ways we can do that. And one thing peculiarly, we don’t know why it works, but which does work, is breathing oxygen. High concentration oxygen can quickly stop an attack from continuing. And if you say ‘I’ve got this’ and  have ended up in casualty, they may well have shoved on an oxygen mask and it’s done that. Although at the same time, just because someone’s put on an oxygen mask and it hasn’t got better, don’t rely on that because it has got to be a very high concentration of oxygen, which unless you’re specifically prescribed that you may well not have been given. So that’s oxygen. That’s useful. The two things we probably most commonly do in the first place are either to start somebody on steroid drugs, corticosteroids, and they will very quickly bring an attack under control. Now, steroids are brilliant drugs, but they have big, big side effects so you don’t want to continue for too long on those, but for using them for a few weeks whilst things are coming under control, whilst other things are being put in place, they’re absolutely fine. Another thing which we can use, and you can only get this in specialist centres like the National Migraine Centre here, are injections in the back of the head called greater occipital nerve blocks.

 

Dr Katy Munro [00:17:53] Yeah, greater occipital nerve blocks are something that we do offer here and we can do it within a consultation. So yeah, talking about greater occipital nerve blocks, we’re also very aware that suddenly the rain is pelting down. So if you can hear any funny interference noises in the background, it’s just the weather trying to introduce another dimension to this episode. So greater occipital nerve blocks are done either side in the back of the head. We use them in migraine too. They are very safe. They’re an anaesthetic and a steroid and it’s like a depo injection and they can last anything up to about 12 weeks in their effect, which if you’re cluster bout is only six weeks then that should see you through to the end of it quite nicely. But the other form of injection that people mainly use are the sumatriptan injections.

 

Prof Paul Booton [00:18:47] Yeah. Now sumatriptan as an injection is very, very effective in cluster. A lot of people we find get given tablets and they simply don’t work. They’re simply not- you don’t get a high enough concentration in the blood to work, it’s only the injection which works.

 

Dr Jessica Briscoe [00:19:02] And they just don’t work quickly enough. I mean, it can take up to 2 hours for the peak amount of the tablet form to get into your system, and that’s just not quick enough. Most people’s cluster headache is gone by that point.

 

Prof Paul Booton [00:19:14] There’s a sort of halfway house with them where you can get them in the form of a nasal spray which are reasonably effective. Although less good than the injection.

 

Dr Katy Munro [00:19:23] I’ve been referring patients and their GP’s to the NICE guidelines and there it quite clearly says that we should be prescribing enough injections for the patient to use two a day throughout the whole of their cluster bout. So that has caused a bit of difficulty for some patients because they’re expensive.

 

Dr Jessica Briscoe [00:19:45] Yeah. And they come in twos as well.

 

Dr Katy Munro [00:19:47] They come in packets of two and so say you are getting a prescription for a months supply, you would need to have 56 injections and some GP’s who, let’s face it, don’t see cluster headache very frequently. It’s quite a rare disease. Once you’ve seen it, you never forget it I think. But they are not aware that these are the guidelines. So sumatriptan is such a good drug for cluster headache and is the gold standard really. So we refer to the NICE guidelines to help with that.

 

Dr Jessica Briscoe [00:20:19] And also some people use a combination of oxygen and the injections. Some people will find that they’ll- particularly if you’re having multiple bouts, multiple attacks in a day it is okay to use both as well.

 

Dr Katy Munro [00:20:31] It’s very safe to use both and there’s no risk of medication overuse headache with sumatriptan that’s the other thing. Where of course with migraine we advise people not to use a triptan on more than about eight days in a month, but there doesn’t seem to be any problem.

 

Dr Jessica Briscoe [00:20:46] Yeah, I agree with that.

 

Prof Paul Booton [00:20:48] Well, apart from anything, that’s because for most people with cluster headache, the attacks are not going to last very long. So by the time you’re over the attack and you don’t need it anymore, you can stop it. And so your system gets cleared out of the drug and you don’t get the problem developing.

 

Dr Katy Munro [00:21:04] I sometimes say to people to get the nasal sprays for a convenient way of using sumatriptan. So if they are going on a train journey and they’re in bout, it’s not so easy to inject yourself with the sumatriptan injection if you’re going on a journey and a nasal spray may be better, but the nasal sprays are very much the second way of using it rather than the injections and shouldn’t be the primary way.

 

Dr Jessica Briscoe [00:21:28] So moving on to sort of preventative, so we’ve mentioned that we use oral steroids as a sort of bridging area sometimes. So when we’ve diagnosed that they’ve got a bout and we’re thinking, okay, you’re bout will be going on for a while we need to think of a way of stopping it. We use abortive medications which we call prophylaxis or preventatives. So I think the first one that’s most commonly used is verapamil, which is- we like to borrow medications from other areas of medicine for headache management, verapamil can be very effective. Usually people start at a certain dose and then they work their way up until the bout stops. The important thing with verapamil is that it needs to be prescribed by somebody who can monitor your heart rhythm with an ECG, with every dose change. And that’s just because it can cause rhythm abnormalities essentially in the heart. It doesn’t happen with everybody, but it’s a high enough risk that everybody should, if anyone’s being prescribed verapamil on any time that they’re being given it, they need to be having ECG monitoring. The next one that we sometimes see. So we mentioned melatonin. We know that that’s a hormone that is naturally occurring in your body and governs your sleep cycle. Some people find that taking melatonin can also, on a regular basis during their usual bouts, can also abort a bout. And then there are the slightly more unusual things. So we don’t particularly prescribe it here but lithium, which is a medication that’s used in psychiatry as a mood stabiliser, can also be very helpful in aborting cluster bouts as well.

 

Dr Katy Munro [00:23:03] And topiramate is sometimes used, particularly if people can’t tolerate verapamil and there’s a number of second line things. But verapamil is often a very good answer to preventing. But the key to having one of these preventors because if you have episodic cluster, you’re absolutely fine in between bouts. So you need to get prepared, have the ECG, have a prescription ready, and then the minute your cluster bout starts, you start on the basic starting dose of verapamil, which is usually 80 milligrams three times a day. And then with your GP supervising or your neurologist, you increase the dose until you get to an effective dose for you.

 

Prof Paul Booton [00:23:44] Again, GPs are often quite nervous doing this because the doses of verapamil are much, much higher than you’d normally use for the heart conditions for which it’s normally used for. And so people won’t be familiar with that at all. And so doctors as well as patients, need their hands held often to bring up the dose to an effective level and keep an eye on the ECG changes.

 

Dr Katy Munro [00:24:07] Yeah. I think it’s really useful to have a specialist headache doctor involved when you have cluster headache.

 

Dr Jessica Briscoe [00:24:15] I mean, I strongly believe that anyone who has ever been diagnosed with cluster headache should have seen a headache specialist at some time because it is rare and the ways of treating are slightly more unusual, I guess, than other types of headache.

 

Prof Paul Booton [00:24:29] And I think while we’re talking about that, ideally it should be a doctor interested in headache, a headache specialist rather than a neurologist who’s main interest may be in other things. Because we’re getting into quite a technical area here and having people who really know what it’s about is important.

 

Dr Jessica Briscoe [00:24:46] Very much so, yeah.

 

Dr Katy Munro [00:24:48] So there is quite a lot of research going on into cluster headache and some new things are coming through. One of the most recent developments was in one of the Neuromodulation devices, which is called GammaCore. And this is a little machine, really, that you hold up against the side of your neck around where your carotid pulse is. If you’ve ever found your pulse in your neck, that’s where you put it. And it puts an electrical impulse and has been seen, if you use it regularly in the way that’s directed, to help some people with cluster headache. And it is licenced for that use in this country.

 

Dr Jessica Briscoe [00:25:26] Yeah. And then I think the other thing that everybody’s very excited about in headache medicine are the CGRP antagonist, the monoclonal antibodies. So there’s been a bit of research into this and there has been one that’s licenced, emgality or galcanezumab. I can never say those words.

 

Dr Katy Munro [00:25:44] They make them nice and long to keep us on our toes.

 

Dr Jessica Briscoe [00:25:46] Which has been licenced in America for use for episodic cluster headache. I think they’re still going through the regulatory processes in Europe before it can be licenced here, but it can be used off licence here because there was good evidence for it. Again, that’s not available in the NHS yet, but usually that starting dose is 300 milligrams at the start of a bout which is three injections and then you take it monthly until the bout has finished.

 

Dr Katy Munro [00:26:15] So that’s a higher starting dose than we would use for emgality for migraine, isn’t it?

 

Dr Jessica Briscoe [00:26:21] Yeah, it is. Yeah. And then for people who’ve found that the preventatives haven’t worked. If they’re getting chronic cluster headache and the preventatives haven’t worked, people can actually have surgery, can’t they, for cluster headache? I don’t know if you want to tell us a little bit more about that.

 

Prof Paul Booton [00:26:40] Well, I mean, this is very, very technical stuff. And so there’s only a few centres in the countries in London that would be Queen’s Square and I’m not sure if anyone else…

 

Dr Katy Munro [00:26:50] I think St Thomas’.

 

Dr Jessica Briscoe [00:26:51] I think St Thomas’ do it.

 

Prof Paul Booton [00:26:52] St Thomas’s will have a go at anything. But what they can put are probes deep inside the brain into the centres which we now know control these headaches. And then by running an electrical current into the probe that can keep a cluster headache under control. Now they work very effectively, but obviously it means you’re having a piece of wire placed in the middle of your brain, which personally I wouldn’t particularly fancy. And of course the expense of doing that. It’s a very, very high tech neurosurgical procedure. So there’s only a few people- it’s only the few most severe people who that is used for.

 

Dr Katy Munro [00:27:32] That would be more for people with chronic cluster headache, not for episodic cluster headache.

 

Dr Jessica Briscoe [00:27:38] And then there’s been a bit recently on diets actually.

 

Dr Katy Munro [00:27:42] There’s a lot of interest in the keto diet in a lot of different medical conditions and not surprisingly, it’s come up in cluster headache as well.

 

Dr Jessica Briscoe [00:27:51] I actually heard an Italian doctor talking about it at the OUCH- we’ll talk about OUCH a little bit later- at the OUCH conference on cluster headache last year. He was showing that there is actually evidence for the use of the keto diet in preventing cluster headache. There have definitely been a few cases who have found that they’ve actually managed to abort their sort of chronic cluster headache because of it. And so for anyone who hasn’t heard to talk about the keto diet before, there are different types of keto diet, but in essence it’s where you try and minimise the amount of carbohydrate you’re having and you have more protein and fat based diet so that you’re changing the fuel that the brain uses. So you switch from using glucose to something using ketone bodies. And that’s supposed to have I think they believe it has an anti-inflammatory effect. We don’t know why it would work for cluster headache, but I think that’s partly because we don’t fully understand the process of it. But it’s certainly something that’s worth trying if you’re struggling.

 

Dr Katy Munro [00:28:53] It’s a tricky diet. It’s the changing over your body to using a different fuel that is the tricky bit and readjusting and I’ve found that several people have found that they get a thing called Keto flu in the first couple of weeks and they need to make sure that their electrolytes are right by having a bit more salt and making sure they’re drinking plenty of water. But there’s a lot of books, information out there about keto diets. I think that’s something you need to get advice on if you’re thinking of doing that rather than just going for it alone.

 

Dr Jessica Briscoe [00:29:23] Absolutely. Yeah. Definitely agree with that.

 

Dr Katy Munro [00:29:26] We’re going to hopefully talk a bit more about OUCH. But just as Jessica’s mentioned it, we would highly recommend anybody with cluster headache to sign up and become a member or certainly look at the OUCH website. So OUCH stands for the Organisation for the Understanding of Cluster Headache and they do remarkable work.

 

Prof Paul Booton [00:29:47] I didn’t know that.

 

Dr Katy Munro [00:29:49] Yes, it’s a very good acronym. And they are advocates for cluster headache and trying to raise awareness and they have a very good website with a lot of resources.

 

Dr Jessica Briscoe [00:29:59] And a lot of support as well for people who suffer with cluster headache and also their relatives. I think also it’s probably a good idea to mention some of the other- so cluster headache actually sits in a group of headache types called TACs, the trigeminal autonomic cephalalgias. I managed to get that one out.

 

Dr Katy Munro [00:30:16] Well done, that’s a good one to get your teeth in for.

 

Dr Jessica Briscoe [00:30:20] Yeah. So given that cluster headache is incredibly rare. The other TACs are even rarer, but sometimes it can be really hard to distinguish between them. So there’s another one called paroxysmal hemicrania, which tends to be shorter attacks, very similar to cluster headache in nature, but very frequent. So I think you can get between 8 and 30, I think is the quoted number of attacks per day, which sounds horrendous.

 

Prof Paul Booton [00:30:49] I was going to say the unusual thing about that one is it goes away with a drug called indomethacin and indomethacin is a strong version of one of the ibuprofen family drugs. And in fact, it’s part of the diagnostic criteria for it. If it goes away with indomethacin, then that’s one of the things that proves the diagnosis.

 

Dr Jessica Briscoe [00:31:09] Yeah. So a lot of headache specialists will routinely, if they see somebody who’s got quite frequent attacks of cluster headache, they will say, well, we’ll do a trial of indomethacin to see whether it’s paroxysmal hemicrania.

 

Dr Katy Munro [00:31:24] It’s probably worth repeating that these are all one sided headaches and very strictly one sided headaches. And also, I think to emphasise that the pain in these kind of headaches is excruciating. People say it goes from 0 to 100 in seconds being really fast onset excruciating pain. Where migraine pain tends to come on a little bit more slowly over the course of maybe half an hour or an hour, although it can be excruciating as well, the pattern is slightly different.

 

Prof Paul Booton [00:31:57] Can I tell my paroxysmal hemicrania story?

 

Dr Jessica Briscoe [00:32:00] Please do.

 

Dr Katy Munro [00:32:00] We love a story!

 

Prof Paul Booton [00:32:02] So I had a patient who was coming to me with chronic migraine in other words, migraine which was happening most of the time. I thought the problem was that they were overusing painkillers. And as we usually do in that situation, I stopped them taking the painkillers and put them on naproxen, which is another of these drugs in the indomethacin ibuprofen family. And that usually just enables people to get over the hill of stopping their painkillers. And then once it’s settled down, we can work on other things. And they came back and I said, ‘well, you know, how’s it going?’ They said ‘Its great, Doc. My headaches have gone away. They’ve just gone’. I thought, oh, that’s funny. It’s just too good that. Now the reason it’s too good is either you’re bonkers or it’s because it’s something else going on. Now, this bloke very clearly wasn’t bonkers. And so I thought, well, I wonder if this is hemicrania which can be treated- the test is indomethacin, but the other drugs in the same family might do it. So we put him back on the naproxen and again he got better again. And so that’s how we made the diagnosis of that condition. And ever since then, I’ve been telling people what you want to do is look for people who get particularly better when you put them on Naproxen. And I’ve never seen another one.

 

Dr Katy Munro [00:33:23] So indomethacin is definitely sort of the gold standard for that test.

 

Dr Jessica Briscoe [00:33:28] Yeah. There are reasons behind it but we’ll talk about that later. So actually hemicrania continua, essentially it’s a continuous headache on one side all the time.

 

Dr Katy Munro [00:33:37] All the time. Yeah, relentlessly.

 

Dr Jessica Briscoe [00:33:39] And then the other thing I think we wanted to talk about was the fact that people often- it can be difficult to distinguish between cluster headache, because it’s a one sided headache, and trigeminal neuralgia, which is technically a facial pain, but it’s actually along the same nerve roots actually, it just affects a different division of those nerve roots.

 

Prof Paul Booton [00:34:02] Branch.

 

Dr Jessica Briscoe [00:34:02]  Yeah. Branch is the better way of putting it.

 

Dr Katy Munro [00:34:03] Very commonly one of the main differentiating things with trigeminal neuralgia is the occurrence of trigger points. And chewing can trigger it. And touching the face in a certain place when you’re having a bout of trigeminal neuralgia. But I think we’ll do probably another episode on trigeminal neuralgia and facial pain later in our series.

 

Dr Jessica Briscoe [00:34:27] Great. So to summarise, I guess. Cluster headache is a much rarer form of headache than migraine. It’s distinctly different to migraine. It’s got quite key features in the fact that it’s always one sided, excruciating headache, which tends to be much more short lived, so tends to last between 30 minutes and an hour, with associated agitation and these autonomic symptoms. I think it’s also important to make sure that people are diagnosed appropriately and have the right treatment available.

 

Dr Katy Munro [00:34:59] Absolutely.

 

Prof Paul Booton [00:35:00] I think it’s important if you’ve been listening to this and you’re a migraine sufferer, but you think actually what I’m hearing sounds much more like cluster headache. You may well be right.

 

Dr Jessica Briscoe [00:35:10] Yeah.

 

Prof Paul Booton [00:35:10] I think the last two patients I had with cluster headache in the clinic here had both diagnosed themselves and the last one spectacularly so she said, ‘the doctor said, I’ve got this, but it isn’t this because of X, Y and Z. I think it’s cluster headache because of A, B and C. And the other doctor said it was sinusitis, but sinusitis gives you P, Q and R’- running out of letters. And it was like listening to a very good doctor explaining the diagnosis and it was absolutely brilliant. And she was 100% right. And I think increasingly we’re seeing people who’ve worked it out for themselves. So if you think that might be you, go and see a GP in the first case. If your GP is not sure, you should certainly get referred. This is a diagnosis which really pretty much needs a referral to a specialist, a headache specialist, unless your GP has got expertise in that area, which some of them of course do have.

 

Dr Katy Munro [00:36:05] I would agree with that. So the patient I saw recently came in and it was like listening to a textbook on audio because they just talked about every single thing that we’ve mentioned today in terms of symptoms and had also diagnosed themselves and then have been in contact with OUCH who had said why don’t you go and see them at the National Migraine Centre so that was good.

 

Dr Jessica Briscoe [00:36:29] Yeah. So that’s always an option if your GP is not keen to refer you, if they’re not sure, you can always self-refer to us.

 

Dr Katy Munro [00:36:35] Because we see it a lot more often here.

 

Dr Jessica Briscoe [00:36:37] Yeah. We also deal with other headaches even though our name suggests we just deal with migraine.

 

Dr Katy Munro [00:36:43] So thank you to Paul and Jessica. And we hope you’ve enjoyed this episode, which has gone a little bit away from migraine. But in the next episode, we’re going to be coming back to migraine and tackling such topics as prevention with other things that we haven’t mentioned yet, like the CGRP drugs and also we’ll be tackling what do you do when you get migraine when you’re pregnant or breastfeeding? So keep listening. Thank you for being with us.

 

Dr Jessica Briscoe [00:37:15] We hope you’re enjoying listening to our Cluster Headache podcast. If you are enjoying it, please do donate some money via our Virgin Money Giving page. The information for that is in the blurb we’re now going to speak to OUCH about the ways that they can support people with cluster headache.

 

Charlotte Burr [00:37:34] Hello Val, thanks so much for joining our Heads Up podcast today.

 

Val [00:37:38] Hello, Charlotte. Good to speak to you this morning.

 

Charlotte Burr [00:37:40] Yeah, you too. So first I just wanted you to tell us a little bit about your story and sort of what it’s like living with cluster headache.

 

Val [00:37:48] Yeah, sure. I’m now in my mid-sixties and I’ve been a cluster headache sufferer since the age of ten. But I wasn’t diagnosed until I was 50.

 

Charlotte Burr [00:38:06] That’s a long time.

 

Val [00:38:07] Yeah, and by that time, I had become a chronic sufferer. As you may or may not know, there are two types of cluster headache. One is episodic, where you get attacks over a period of weeks or months and they’ll go away as suddenly as they started but they will come back and the gap between can be weeks, months, years sometimes. That’s the more common form of cluster headache. And chronic cluster headache is where you have attacks anything from 1 to 6 times a day, 365 days of the year. And get little, well, you get little or no respite. Any respite is less than 4 weeks in any 12 month period. So by the time I was diagnosed, I was a chronic sufferer. It’s at that time, which is what about 18 years ago now, it wasn’t particularly well known and I was told that it was severe migraine, go away and learn to live with it. A more enlightened consultant said, I think you’ve got cluster headache. I contacted Migraine Action and they even put me in touch with both the National Migraine Centre and also OUCH UK. I spoke to the advice line there and through them I got an appointment to be seen at the National Neurological Hospital in London. I was then diagnosed as a chronic cluster headache sufferer.

 

Charlotte Burr [00:39:45] Was it kind of a relief getting a proper diagnosis or?

 

Val [00:39:49] Yes, it was. And I’ll be very honest with you. I burst into tears because, you know, a lot of chronic sufferers that are undiagnosed or even episodic who are undiagnosed. The relief of knowing what it is, you begin to think that I must have a brain tumour, and then you start thinking, well, am I bringing this on myself? Is it me? Is it psychosomatic? You know, am I doing something to make myself have these headaches and you start going down a horrible road where you think it’s your fault and it’s not? So to me, it was a huge relief to have a name. And also I then heard, you know what I could possibly treat it with and I went on from there. At the moment, coming forward 18 years, during that time up until 2008 I was having, sort of, half a dozen attacks a day lasting anything from 15 minutes, half an hour, up to 2 or 3 hours. I think the worst I ever had one day was 9 hours.

 

Charlotte Burr [00:40:54] And what does it really feel like for someone that, you know, maybe isn’t a sufferer?

 

Val [00:40:58] Oh, yeah.

 

Charlotte Burr [00:41:01] I can’t even imagine.

 

Val [00:41:01] Well, the pain is centred around the eye usually, around that area on one side, it’s generally speaking, it’s unilateral, but it can change sides and you can have it in some rare cases, both sides. But the pain is excruciating. I mean, it’s not a case of don’t lie down, you can’t lie down. Your extremely restless. The pain is excruciating centred around the eye. Your eye will water, it can redden, your nose can become blocked or runny. You can get further pain down your jaw line and the neck and shoulder. But it is literally, the way I describe it, is like someone trying to drive a knitting needle through my ear while at the same time they’re trying to claw out my eye,.

 

Charlotte Burr [00:41:52] Oh my gosh.

 

Val [00:41:54] And there was a case where a gentleman removed his eye. This is going to sound awful, but it’s true. He removed his eye with a spoon because he thought that would relieve the pain. That is the extreme that this pain can drive you to. And I have myself, I’ve literally banged my head on walls, doors, anything to try and shift the pain. And I will quite frequently hit my head with the heel of my hand. And it’s just a mechanism to distract to try and get rid of the pain. It’s quite primaeval actually your reaction.

 

Charlotte Burr [00:42:32]  The word cluster headache doesn’t really give you a good idea.

 

Val [00:42:38] No, it is said by neurologists that it is the most painful condition known to mankind, whatever the correct PC is. And we know of war veterans who’ve been injured by gunshot or whatever and they said it’s worse than being shot. And the top of all is female sufferers who have had children will say that- and I’ve said it myself, this is worse than childbirth. You imagine going through childbirth 1 to 4 times a day with nothing to treat it with, you know, because you’re not yet diagnosed. But it was very hard at first to try and come to terms with it. You know, you’ve been battered several times a day by this pain. If you’re undiagnosed and you haven’t seen a headache neurologist, some people can go through weeks, sometimes months, even years of hell before they get a diagnosis. But I treat my cluster headaches with high flow oxygen and injections of a drug called sumatriptan. The brand name for it is imigran. But you’re limited. You only have two of those in a day. So I use oxygen as a backup and if I can get to it quick enough during the day, I can get rid of attacks with just high flow oxygen.

 

Charlotte Burr [00:44:11] So it’s really important, getting the right diagnosis and getting the right treatment.

 

Dr Jessica Briscoe [00:44:13] Yes, that’s the difficulty that a lot of people have because GP’s very often don’t know about it. So they may say oh I’ll refer you to a neurologist, but what they don’t appreciate is that you really need to be referred to a headache neurologist. There’s a good few in the UK now. And calling OUCH was how I found a headache neurologist at the National Neurological Hospital in London. Once you’ve got a diagnosis from a headache neurologist, they then write to your GP confirming the diagnosis and with treatment recommendations. So if you’ve got a headache neurologist who’s saying that, the GP will be more confident in prescribing. But if they’re reluctant to diagnose you correctly, and quite rightly, they will send you to the nearest neurologist who may or may not be conscious. You know, it’s a bit of roulette, you know.

 

Charlotte Burr [00:45:13] And I guess it’s sort of quite a rare condition. So a lot of GPs won’t have seen it.

 

Val [00:45:20] Yeah, we don’t have a precise figure, but there could be one in a thousand sufferers. You know, some GP’s may never see a case at all in their professional life and at most they probably have one or two in the practise. But there could be anywhere between 68,000 and 100,000 sufferers in the UK. Many, many of those are either undiagnosed or mis-diagnosed frequently.

 

Charlotte Burr [00:45:54] And that’s the thing we need to raise awareness about.

 

Val [00:45:59] So, you know, the key is to hopefully, you know, you find a GP that will refer you to a headache neurologist and will also prescribe appropriately. They may well be prepared to prescribe what is suggested, but they do so in penny pinching amounts. And that’s not criticism because injections are expensive, but where cluster headache is concerned, the injections. You’re limited to two a day. So if you’re having you know, you’re using those two a day, you can get rid of 14 injections in a week. If it’s prescribed for migraine, a migraine sufferer is not expected to have that many attacks in that timeframe. And they expect us to have the same usage as a migraine sufferer. And it isn’t. It’s completely different. But talking to the prescribing adviser, a clinical commissioning group, you know, each area in the UK has a clinical commissioning group and the GP practises in that area could talk to them and the patients can to find out, you know, what the prescribing guidelines are for cluster headache.

 

Charlotte Burr [00:47:11] Yeah.

 

Val [00:47:12] Well the guidelines, NICE, The National Institute for Health Care and Clinical Excellence, back in 2016, they brought out guidelines specifically written for GPs, on all of the headache conditions, not just cluster headache, but all of them. And it does state in there, you know, prescribe high flow oxygen, sufficient doses for, you know, a cluster headache sufferer. Referral to a headache neurologist. You know, they’re quite clear, quite specific on it. So there are guidelines there for the GP and of course the, you know, the GPs prescribing Bible, the British National Formulary, the good old BNF, if a GP looks up cluster headache in there they’ll see much the same thing, sumatriptan injections or nasal sprays, high flow oxygen and the standard prevent medication is verapamil, which is a calcium channel blocker. But it can work quite well in keeping down cluster headache. And of course NICE also emphasises the referral to a headache neurologist and that can make all the difference to people. Personally and I’ve spoken to a lot of other sufferers in the UK, knowing what you’re dealing with is half the battle. If you’ve got a confirmed diagnosis. When you don’t know what it is, you’re in a complete muddle and you don’t know which way to go, who to talk to. But getting that confirmed diagnosis, has a great bearing on how you’re able to deal with your particular headache condition, whatever it is.

 

Charlotte Burr [00:48:57] So you’re a trustee of OUCH now?

 

Val [00:49:01] That’s right, yes.

 

Charlotte Burr [00:49:02] So for our listeners who don’t know about OUCH, could you let them know a little bit about what it is and what services OUCH provides?

 

Val [00:49:10] Right. Well, OUCH, the Organisation for the Understanding of Cluster Headaches.

 

Charlotte Burr [00:49:14] Great name.

 

Val [00:49:15] Yeah, I know, it’s great, isn’t it. And it’s a UK wide organisation. The whole of the UK, but we do have some members from all over the world and at present we are the largest cluster headache support organisation in the world online. It was formed in July 2002 and we operate a helpline or advice line, I should say. Our aims are to support sufferers of cluster headache and their families and supporters too because it affects the whole family. To liaise with the medical professionals. To encourage our members to assist with research projects, and they do and to produce information on cluster headache. We have a website which we maintain which has information on cluster headache, what it is, how it’s treated, what to ask for, who to ask for it. All the information is there. But our advice line, I would say, is probably the single most important service that we offer. And it is staffed by- everybody who does the advice line, they’re all volunteers. It’s run on an entirely voluntary basis. But everybody who is on the helpline is a sufferer.

 

Charlotte Burr [00:50:42] So they know how it feels.

 

Val [00:50:47]  It’s important. You know, if we were rich enough, we could have a bank of phones and people answering it and a sheet with information. But it’s never the same as talking to somebody who suffers with what you’ve got. There’s that immediate understanding, that immediate empathy, and you find that people will relax a bit then. They will talk more openly to you because they know that you understand where they can be a little more reticent with someone who’s got no idea really what it is, you know? It can be quite emotional.

 

Charlotte Burr [00:51:23] I can imagine.

 

Val [00:51:24] They’re just so relieved that somebody knows what they’re talking about. But we of course, we have to emphasise we’re not health professionals. We can’t diagnose or prescribe. But what we can do is point them in the right direction, make suggestions for what they can ask their GP for. Give some guidance on how to get a referral to a headache neurologist. And I think that is the thing that we, perhaps- I think we do best and it’s as far as I’m aware, it’s the only cluster headache advice line available in the world. You know, we might be a small nation, but we’re doing well in one area. We rather wish it was a different one but we are leading the world and we, you know, everybody gives their time freely, as I say. We also organise meetings throughout the UK. We try to move them around so that once every couple of years there should be a meeting somewhere near you. And if members want to organise a little get together themselves, say in a cafe or something like that, we will encourage them. We’ll try and send someone along who can facilitate discussion or, you know, answer questions there. We will support them. And we have a wonderful army of people who fundraise for us and do the most hair raising things. There’s one of those aerial slides. You know, it’s quite a hair raising one in North Wales. They’ve done that. People have climbed mountains. One gentleman sailed around the UK for us, people have had hair cuts. They’ve done extraordinary things and I never cease to be amazed at their ingenuity. We also have had teams in the London 10K and I’ve done the London 10K myself four times for OUCH.

 

Charlotte Burr [00:53:19] It just shows how much, you know, an organisation like that means to people.

 

Val [00:53:23] Yeah, it does. And I was glad to do it. It got me fit and perhaps helped a bit. But I had to carry my portable oxygen with me because I never know when I’m going to get an attack. So, you know, I got some funny looks from the crowd, but I didn’t care. I didn’t care. I was enjoying myself. There’s nothing like London on a lovely summer day, you know? But anyway, there are many people who’ve done wonderful, wonderful things for OUCH. And that’s how we keep going by membership subscriptions and voluntary donations.

 

Charlotte Burr [00:54:02] And what do the members get, you know, if you become a member of OUCH?

 

Val [00:54:07] Yeah, if you become a member of OUCH, you get a membership pack which will include full information on cluster headache, you’ll get a little information card which gives the OUCH contact details on the front and on the back it’s a brief description of cluster headache and what’s happening to you. Because, early on, there were a lot of people who pulled to the side of the road perhaps to deal with an attack or were taken ill in the street. And of course, when you’re in the throws of such pain, you can’t talk, you can’t think, you know, can’t do anything. But if you hand them this card on the back, it tells them what is happening to you, that you don’t need an ambulance, that you have got your medication with you and you will be alright in a short time. And that was received- you know, people are buying them from our website five at a time, you know, but you get one free when you join. And people were actually being breathalysed by the police because they weren’t able to talk. And you can imagine the groaning and they could appear to be under the influence of something. And that has been very useful to save people a lot of trouble with the police when they’ve been stopped, you know? We’ve been asked for them in foreign languages, so, hopefully what we will do is to be able to put them on our website and people can download the translation that they need, if you see what I mean. We couldn’t produce a dozen in different languages. It would be hugely expensive. But if somebody can download it, that might be a help to them. You also get a discount on tickets for our events and you also get first refusal on tickets. You get notified first about any OUCH events. You also get notified first about any research trials that are coming up and you get priority to apply to take part. Of course, there’s our website as well and we have a members forum on the website. We do have a Facebook group. We’ve produced an online magazine which members have access to. You know, they log in to the website and they can read the magazine with what we’ve been up to, who’s done what to raise funds for us, what’s going on in the medical world, news about things going on in the media and so forth. So we try to keep our members as up to date as possible.

 

Charlotte Burr [00:56:48] And if a sufferer is having any issues with sort of employment, do you sort of help with that kind of thing as well?

 

Val [00:56:54] Yes, we can. Yeah. If we don’t know the answers ourselves, we can certainly point people in the right direction. But we can assist with general advice on employment rights and also on benefits, because cluster headache is a disability. And as such, there are certain things that employers need to abide by if they have a disabled employee. And for instance, one of those things is that any absence for anything other than cluster headache must be recorded separately. They can’t lump it all together saying, You’ve been off X number of weeks, we’re going to fire you or whatever. It has to be so many weeks for cluster headache and so many weeks for whatever other illnesses. And employers would be asked to make reasonable adjustments, maybe allow flexible hours, that sort of thing, you know, a comfortable working environment, you know, well ventilated, a screen cover if they’re affected by strong lights, etc., you know. So it is worth making enquiries about what your rights are as a cluster headache sufferer and therefore a disabled person. So both of those we can provide advice and guidance on. If we don’t know, we’ll try and find the person who does.

 

Charlotte Burr [00:58:20] And that’s what’s needed, you know. That’s brilliant. So how would someone contact OUCH?

 

Val [00:58:26] There’s a variety of ways they can contact us. First of all, our website which is www.OUCHUK.org and you’ll find a wealth of information on there. There’s also a questionnaire do I have cluster headaches so you can work out hopefully what type of headache you might have? We do stress might because we’re not doctors. We have an advice line which is 01646651979. You can email us on info@OUCHUK.org And for advice on your employment rights and benefits you can email on rights@OUCHUK.org. There’s plenty of ways you can contact us. So if you don’t like using social media, if you haven’t got a computer, you can ring us, you know. We try to keep all of those options available because we’re aware that not everybody has all the modern bits and pieces, mobile phones, you know, laptops, computers, Kindles, whatever. We have to be there for everybody because our youngest sufferer we’ve come across was one year old.

 

Charlotte Burr [00:59:52] Gosh. That’s so young.

 

Val [00:59:53] And the oldest, he passed away a couple of years ago. But he was 91.

 

Charlotte Burr [01:00:00] It just affects everyone.

 

Val [01:00:02] Yeah, it’s no respecter of age. Generally speaking, first attacks I’m generalising here, but usually in 20s/30s, something like that. I have to emphasise that I was the rare exception with these starting at the age of ten. I did know one other sufferer whose experience was very similar to mine. But that’s unusual. You do get some child sufferers, it can be quite intense in their teens, but as they get older, it seems to ease a bit. But my personal experience is that age didn’t make any difference because I was over 50 when I became chronic. But since then, I’ve had an operation and there’s a newer version of this that’s going to be available soon. But the one that I’ve got is something called an occipital nerve stimulator implant, ONSI, basically it’s a small battery that’s implanted either in the abdomen or the shoulder. It’s about the size of a pacemaker. So half the size of the palm of your hand. From that battery, the wires go up through your body under the collar bone to the back of the head. And at the back of the head, you’ve got two large nerves and if you imagine spreading your fingers of each hand on the back of your head, they’re called the occipital nerves. And they exit the skull under the skin at the back of the head. And the surgeon puts contacts on each of the branches of those nerves, and the battery emits a pulse, which you can feel a gentle tingling at the back of your neck as the pulse is going through. I find it quite soothing, actually. And it cuts down the incidence and the severity of the attacks. My device is rechargeable, so I put on a fancy elastic belt. I look like something out of Star Trek. I put on this fancy elastic belt and it recharges the internal battery. So once every week or ten days, in fact, I’ve got to do it this afternoon. Once every week or ten days, I recharge my battery. My family teased me when I had it done because they said I was Wales’s first bionic woman.

 

Charlotte Burr [01:02:29] But you found it helpful?

 

Val [01:02:33] Yes. Oh, my goodness. Yes. I went from 1 to 6 attacks a day, sometimes more to 2 or 3 a week.

 

Charlotte Burr [01:02:41] Oh, wow. Yeah. And I guess that must make such a difference to you.

 

Val [01:02:45] It made a huge difference. I’m still chronic because I’ve never gone longer than ten days without an attack. I am still a chronic sufferer. I still never know when I’m going to have an attack. I get a few minutes warning. I can feel the back of my neck stiffens and I’ll start yawning a lot. And sometimes my husband picks up on that more quickly than I do, and he’ll say, ‘Val, come on, go and get on your oxygen’. And I’ll realise then what I’m doing and as soon as I get to it the better, you know. So I still have that, how can I put this. If you’ve got cluster headache you lose the freedom that non sufferers don’t think about it, you don’t think about it until you’ve got something that prevents you, you know, doing this particular thing. And for us, you know, we can’t just say, Oh yeah, we’ll go to so-and-so next week, we’ll go to the pictures or London for a weekend or whatever. We never know when we’re going to have an attack. So we have to think in advance. We have to make sure we’ve got our medication, make sure we get our oxygen, make sure we got our information cards just in case, you never know. And you have to think in advance all the time and try, well, you know, even in the UK you would have to arrange oxygen with a supplier in the area that you’re going to. That can all be done over the phone with your own oxygen supplier. They’re pretty good for setting up liasons in the regions in the UK that supply it. And even going out for dinner, you know, two or three times, I’ve had to leave a restaurant with a bright red face because I know I’ve got an attack coming. I have to go deal with an attack, you know, and my husband goes up and pays the bill. Supermarket trolleys, you know, I’ve abandoned those before now because I’ve had to go rush back out to my car to have an injection and have some oxygen and just sit for half an hour until I’m clear and ready to go again. It’s only a small thing but you have to think in advance a lot of the time, some people have ended up having to change their jobs. They have lost their homes. They have lost their families even, sometimes. Close families find it very difficult to understand what you’re going through. And it does change people’s lives totally.

 

Charlotte Burr [01:05:29] That’s why it’s great that an organisation like OUCH exists that can offer the support that people need.

 

Val [01:05:37] Yes. And I would say that our meetings which we have two or three times a year, the single biggest benefit because we survey our members afterwards to find out what they thought, suggestions for content, for future meetings, that sort of thing. We also ask what they found was of most benefit to them and most of the time I would say about 75% of them would say that being able to talk to another sufferer was the biggest benefit to them because it’s very often the first time they have met another sufferer.

 

Charlotte Burr [01:06:11] Of course.

 

Val [01:06:11] And again, it’s like with the advice line, it’s being able to talk to somebody who understands what you’re going through, knows what it’s like, understands the pain. You don’t have to explain anything. You can talk on a level playing field. And that’s what means the most. And it’s quite common to see people, you know, quietly blowing their noses and sniffing into a hanky because they’re just so relieved, you know, might sound odd, but we’re pleased that we’re able to, you know, facilitate that. It’s given them some benefit immediately they arrive, you know?

 

Charlotte Burr [01:06:50] Well, that’s wonderful. Thank you so much. I really think our listeners are going to benefit so much from all of that.

 

Val [01:06:55] I hope so.

 

Charlotte Burr [01:06:57] No, they really will. So thank you so much for joining us today.

 

Val [01:07:00] Pleasure.

 

Charlotte Burr [01:07:04] Thank you for listening to this episode of our Heads Up podcast. Our next episode will be on Migraine Preventatives, where Dr. Munro and Dr. Briscoe discuss injection therapies, including Botox and greater occipital nerve blocks for migraine. So check that out then.

 

[01:07:22] 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.