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[00:00:00] Did you know that the irritation of nerves around your face can lead to several different types of pain conditions? There’s more to facial pain than toothache. Welcome to the Head’s Up podcast brought to you by the National Migraine Centre, the only UK charity treating migraine and headache.
Dr Katy Munro [00:00:25] Hello, welcome to this week’s episode of Head’s Up podcast. I’m Dr. Katy Munro. I’m here with.
Dr Jessica Briscoe [00:00:31] Dr. Jessica Briscoe.
Dr Katy Munro [00:00:33] And we’re socially distanced, but we’re actually in the same room the first time for months. So welcome to this episode, which is going to be talking about facial pain. So we’ve often found that people come into our headache clinics and are talking to us about their headaches and it’s pain that they’re feeling in their face. And sometimes this has led to confusion along the way, hasn’t it, Jess?
Dr Jessica Briscoe [00:00:58] I think people always think that migraine has to be the head, but actually we’ve discussed it before. It can be the face. It can be the shoulders. I think with facial pain there’s also a lot of other things in the face that people attribute to that pain. So particularly actually, our colleague Naz did a lovely tip on sinusitis versus.
Dr Katy Munro [00:01:16] Yes.
Dr Jessica Briscoe [00:01:16] Migraine pain. And often people can be- can go down that sinusitis route for years actually trying different nasal sprays, antibiotics, not feeling much better. And we were discussing the reasons behind this. So one of the nerves that, again, we’ve talked about lots is the trigeminal nerve, which is that nerve that has three branches which serve the face, one at the top of the face above the eyebrow, one towards the nasal area and one at the bottom of the jaw. And that sort of has lots of different functions, but particularly pain, some sensation, some other functions, too, like temperature control, too. And when that gets stimulated in migraine and other types of headaches, you can get pain in that region often, particularly that nasal distribution.
Dr Katy Munro [00:01:59] Yeah, that’s true. And because, of course, a migraine attack can change from one attack to the next and it can change throughout your life. So sometimes I personally have found that sometimes I’ll have a migraine headache that’s clearly in the top of my head or on one side. But other times I just get this very sharp pain, a bit like a knitting needle just to the right of my nose. And it took me quite a long time to realise that this was just another manifestation of my migraine. And it’s a really nasty pain when I get it. But the migraine treatments work really well.
Dr Jessica Briscoe [00:02:30] Absolutely. And it’s quite interesting because it used to actually be a separate diagnosis all of its own: facial migraine. But when you look at the I mean, I seem to spend a lot of time looking at the criteria, the international headache classification-3 (ICHD-3) and they now have a little small print at the bottom, which said that they don’t feel it should be its own type of migraine because actually, it’s just a different manifestation of the pain.
Dr Katy Munro [00:02:56] Just another way that people feel it really. And so we know that that can cause confusion, especially if it’s around that sort of middle section. So we’ve heard a lot of patients saying that they’ve had sinus x rays or maybe been diagnosed with sinusitis, had antibiotic after antibiotic course. So I suppose the message really is think about the diagnosis of migraine if you have any pain in the face. So dentists also sometimes see patients with facial pain that could be migraine.
Dr Jessica Briscoe [00:03:27] Absolutely. And again, I’ve heard of people having tooth extractions, some quite complicated dental surgery. And actually years down the line, they realise it’s migraine. And I think it is because facial pain doesn’t really belong to anybody. That’s the difficulty. Often people do- they see their GP, they’ll see an ENT, an ear, nose and throat doctor. Maybe they’ll see a dentist and then a maxillofacial surgeon. Sometimes they’ll see a neurologist. So it’s sort of it’s not owned by anyone, it sits between these different-.
Dr Katy Munro [00:04:00] Can pop up in different people’s clinics, basically.
Dr Jessica Briscoe [00:04:03] And that can make it quite difficult. You know, people with the best will in the world will try and do what they can. People do end up having surgery sometimes. Again, sinus drainage, I’ve seen too.
Dr Katy Munro [00:04:13] The other thing I think, which I was talking to a colleague about a patient the other day, if you have a sensitivity of the brain like we know that migraine sufferers do, your brain is more sensitive to change. So any changes that irritate the brain, which aren’t necessarily migraine, can actually make migraine worse. And I’m thinking at the moment about a patient who had orthodontic treatment. So later on in life, quite often people have braces fitted or they have quite extensive work to change their smile. And if you change your smile, you also tend to change the alignment of your jaw and your temporomandibular joint. And that in itself can be very painful. But if you’re a migraine sufferer, and you do all that your migraine may also kick off as a result. So it’s all linked, really, isn’t it? And so thinking of migraine for anybody and of course, the face is part of a head. So we sometimes forget that it is. Anything about the neck is the head. What about earache? Do you think people get earache with their migraine?
Dr Jessica Briscoe [00:05:17] Yeah, you can get weird ear symptoms. I’ve talked about tinnitus. I actually get tinnitus with my migraines sometimes. But I think you can get earache I think it’s less common again, I think that is largely- yeah, you can get it. I’ve definitely seen it being presented in conferences and things like that. Again, that’s one of those areas that doesn’t tend to sit with anybody so again goes from ear nose and throat.
Dr Katy Munro [00:05:41] Goes from pillar to post. You can get fulness in the ear sometimes I think in some types. And then we were talking earlier about this sort of control of temperature and the autonomic nervous system and that can give you changes in the face like Pallor, or sometimes people get a droopy eyelid or watering of the eye or redness of the eye. That can happen in cluster headache as well, which is often very much at sort of the starts in the front of the face, but always on one side and often really into the eye area.
Dr Jessica Briscoe [00:06:17] And I think people often think that that is diagnostic of cluster headache. But it isn’t. you can get it in migraine. And actually a lot of- I think the thing that often muddies the waters is nasal blocking or running as well which is another autonomic symptom. And that sometimes can make people think that it’s, again, something to do with the nose or if you’re getting pain in that area to do with the sinuses. But it can be a feature of migraine. So quite a lot to be thinking about. I think the Take-Home message is, if you have facial pain, don’t forget the face is still part of the head. If it feels a little bit like migraine pain if other things haven’t worked. It’s worth trying your migraine treatment to see if it make things better. It’s worth just having that at the back of your mind as a potential cause.
Dr Katy Munro [00:07:01] There is one particular kind of facial pain which is quite different from migraine and is often associated with really sensitive trigger points giving kind of these electrical shooting pains. And Jessica is going to be talking to Dr Giorgio Lambru, who is a consultant at Guys and St. Thomas’, about trigeminal neuralgia and other types of facial pain that they see in the clinic.
Dr Jessica Briscoe [00:07:27] Hello. So I’m joined by Dr Giorgio Lambru.
Dr Giorgio Lambru [00:07:31] Hello.
Dr Jessica Briscoe [00:07:31] Who works at- well you can introduce yourself actually.
Dr Giorgio Lambru [00:07:35] So I’m a neurology consultant and a headache specialist at Guys and St Thomas’s hospital. I’ve got an interest in headache for sure. I have been doing that for many years, especially looking after issues with complex headache disorders especially autonomic cephalalgias and with regard to facial pain we have established a multi-disciplinary very large facial pain service at Guy’s and St Thomas’ where we think we treat our patients with the way that facial pain should be treated, which is in a multi-disciplinary fashion. I also have an interest in neuromodulation and sort of intervention- complex interventions for the management of headache and facial pain.
Dr Jessica Briscoe [00:08:20] Fab. Because I was talking to some of my colleagues the other day and we always think that facial pain is one of the- it’s sort of the forgotten area of medicine. It kind of never really falls into one specific speciality. And I know GPs sometimes struggle to think, well, who do I refer this person with facial pain to if they are struggling? And I think it’s something that patients can suffer with for quite a long time without it fully being identified exactly what the cause is. I don’t know if you’d agree with that?
Dr Giorgio Lambru [00:08:45] Yes, that’s my experience as well, the problem is because there are so many structures in the face that can cause and drive pain and other symptoms, the GPs quite often don’t know where to refer and the spectrum of facial pain is always quite misdiagnosed and mistreated. And the other thing is that sometimes when you refer to certain specialists, they don’t refer forward. So they think that they’ve got the diagnosis right and they think that the problem involves a specific structure of the face, hence they continue treating the patient. Sometimes, you know, in an invasive fashion and then that causes delays and may cause further pain symptoms and which can blur the initial presentation and make the final diagnosis a bit more complex.
Dr Jessica Briscoe [00:09:38] You mentioned that you work in MDT, so multidisciplinary team type fashion. What other specialities do you tend to work with?
Dr Giorgio Lambru [00:09:45] So we I mean, we have the privilege to be able to set up this clinic, which on the NHS is really rare because it’s very- it’s quite expensive. We find the MDT relatively cost effective. I’m not going to get into details, but the idea is to create essentially a one-stop shop service where patients with complex condition that we’ve already vetted so we look at their admission to see whether they’re appropriate for the clinic. They’re seen by myself as a neurologist then we’ve got a neurosurgeon with a specialist that interested in skull base, so trigeminal glossopharyngeal surgery, neurosurgery and an oral facial specialist, so a dentist with an interest in facial pain and end up being consulted alongside our nurses. The main reason is because the role of the neurologist would be to phenotype the condition and make sure that neurological causes are identified if present. The dentist will look at that potential dental causes, the neurosurgeon will help with certain procedures like the possibility of trigeminal neuralgia and the pain specialist for interventional treatment of the facial structures. We also collaborated with ENT which is the other- but not directly in the clinic indirectly.
Dr Jessica Briscoe [00:11:13] Because there is, as you sort of mentioned already, there’s quite a long list of different types of facial pain. We’re not going to go into all of them. And Katy and I hopefully at the beginning of this podcast, we talked a little bit about headache or migraine type facial pain and stratified it a little bit. We do actually see a fair amount of facial pain in the clinic. But I think that we did mention the fact that obviously people kind of forget that the face is part of the head as well. So you can get sort of other causes of headaches can also relate to the face too. So I sort of wondered if maybe we’d start off by talking about trigeminal neuralgia a little bit.
Dr Giorgio Lambru [00:11:51] Well, so, trigeminal neuralgia is a nerve type of pain driven by the trigeminal nerve and is classified as a cranial neuralgia. So it means a nerve pain driven by the cranial nerve. There are a variety of cranial neuralgias and trigeminal neuralgia is the most common one. We also have occipital neuralgia, glossopharyngeal neuralgia and a variety of the different branches of the trigeminal, sensory facial and occipital nerve neuralgias, so they belong to a group of condition that are grouped together because they present essentially in the same way. So trigeminal neuralgia in particular, although it’s quite rare, it can be quite a devastating condition in terms of if it’s misdiagnosed, mistreated. It normally affects women. Normally, we say from the age of 60 onwards, although there are some cases that occur in young people. And in that situation, normally we tend to advise to rule out a secondary pathology of the brain, especially if the pain is bilateral or if it alternates sides, because it’s unusual that a young person at the age of 20/30, let’s say, even 40 starts having trigeminal neuralgia although it can happen. And it’s essentially a pain disorder that involves the face normally the second and third branch of the trigeminal nerves, the cheek area and the jaw area. Quite often in combination, sometimes in isolation. There is in some people the pain can affect the eye. So the first branch of the trigeminal nerve, that’s very bad and I think we can talk, maybe later, a bit about this overlap, which is quite interesting from a diagnostic and treatment point of view and also pathophysiological point of view. The pain is normally one sided, short lasting, electric shock stabbing, excruciating. And it is quite often triggered by application of stimulation, even normal stimulation on facial structures, on the gums so intraoral. So eating, chewing, shaving, drinking, cold wind blowing on the face. All this stimulation would normally not- are not meant to cause pain because of the mechanism of the pain mechanism they are typical for trigeminal neuralgia can cause these excruciating short lasting pain episodes.
Dr Jessica Briscoe [00:14:23] And it is an episodic condition usually isn’t it? So people sort of have one episode lasting weeks to months, generally speaking?
Dr Giorgio Lambru [00:14:30] That’s exactly the case. So it’s an episodic condition, but the bouts of daily pain occur quite erratically. So if you compare it to other episodic condition like cluster headache for example, the main difference, apart from the pain location, duration of the pain, is actually the bouts are very random, whereas in the cluster headache they follow a seasonal pattern. Quite often winter months are bad for trigeminal neuralgia patients for a variety of reasons, including the cold weather and the cold wind, which can give one of the main triggers.
Dr Jessica Briscoe [00:15:01] And you can get sort of a you can get some other features with it as well, which can possibly make it a bit more confusing for any doctors who see it. So I was thinking some of the autonomic type symptoms, which I think traditionally I was always taught that any sort of the attacks, the cluster headache and things like that, you get autonomic symptoms. But I’m realising more and more that actually they’re quite common in lots of different pain conditions.
Dr Giorgio Lambru [00:15:24] I mean, the reason is because once you stimulate the trigeminal system, especially we found it in my research, that the more intense stimulation of the trigeminal system, the more likely it is for the parasympathetic system to be recruited and then to give rise to the cranial autonomic features, so the watering of the eye, the redness of the eye, runny nose, blocked nose, redness the face. So definitely if you look at the International Headache Society Classification, so patient with trigeminal neuralgia should not exhibit cranial autonomic features.
Dr Jessica Briscoe [00:16:01] Yeah.
Dr Giorgio Lambru [00:16:02] The minute that they have one or two of them, then you need to start thinking about the variants of trigeminal neuralgia or more the condition that overlap with TN such as SUNCT and SUNA or perhaps paroxsymal hemicrania. If you look at the spectrum of duration of the attacks. But then but then you’re right. So if you look at the early studies in the early 90s, they were reporting patients with they consider having classical trigeminal neuralgia. And they were having cranial autonomic features. One or two of them, normally what we say is in trigeminal neuralgia you’re technically not allowed to have them. But if you have mild cranial autonomic features which are infrequent, they occur perhaps with excruciating attacks, not with the majority of them, then potentially you could still diagnose the patient as trigeminal neuralgia. But this is a wide very interesting debate that is not solved yet. I think for the sake of clarity, the minute that the patient report these symptoms. And actually one of the important things when a clinician thinks that trigeminal neuralgia symptoms are quite atypical. I think looking for cranial autonomic feautures is quite important.
Dr Jessica Briscoe [00:17:17] OK.
Dr Giorgio Lambru [00:17:18] And if you pick up some, then you have to start thinking about the variants of trigeminal neuralgia.
Dr Jessica Briscoe [00:17:22] OK, also you mentioned about bilateral pain as well, because that’s something that I think would probably put a lot of generalists off actually thinking it was trigeminal neuralgia. Sort of when I was doing some research, I saw that it is rare, but it can happen that you get pain on both sides.
Dr Giorgio Lambru [00:17:38] Yeah. So, I mean, I think you have to make a distinction. So you can have bilateral pain at the same time.
Dr Jessica Briscoe [00:17:46] Yeah.
Dr Giorgio Lambru [00:17:46] And with nerve type features, so short lasting, shooting down the face, triggered and that’s rare. As you were saying, I think those patients need to have an MRI scan to be scanned, you need to rule out, especially in females that they’ve got multiple sclerosis, for example. Which, you know, certain lesions in the certain areas of the brain can produce this type of pain. It is more frequent to see people that got the unilateral side-alternating attacks. So the pain is still exquisite from one side, but it jumps from right to left in different attacks during the same bout. And then again, that’s slightly more frequent. And I see that in the younger population. But again, it can put clinician off because TN is considered a unilateral condition. But again, all these unusual forms of trigeminal neuralgiform pain need to be investigated before a diagnosis of idiopathic or classic TN is made.
Dr Jessica Briscoe [00:18:52] So that kind of brings me to my next point, which is about investigations. So when does this need to be investigated? I mean, I’ve definitely seen, more in GP land, sort of classical case. So it’s an older woman who’s had bouts of it before where it’s, as you said, that sort of burning unilateral pain, which is exacerbated by sort of very, very light sensory stimulation. And I just sort of say, right, let’s try some carbamazepine and get on with it. Well, who would you tend to investigate? I’m guessing those people you’re just talking about before with the more atypical symptoms and what sort of investigations would you usually suggest?
Dr Giorgio Lambru [00:19:27] So if you have, like the patient that you just mentioned, which fits the demographic feature characteristics and fits the clinical features, then because of the variety in the condition and because of the fact that surgery is one of them, we can come on to that topic later, is one of the potentially very effective treatments so I suggest to scan everybody.
Dr Jessica Briscoe [00:19:56] OK.
Dr Giorgio Lambru [00:19:56] And not only to scan them with a routine MRI scan of the brain, but to request specific sequences of the trigeminal nerve. We call them CISS or FIESTA-C sequences. Essentially, they are highly defined sequences of the peripheral of the trigeminal nerve which highlights the presence of either a tumour on the nerve or a vessel. Normally enough to be pressing on the nerve. And I think that’s the case for, especially if you want to consider at some point surgery, but because of the variety of the condition we do it anyway in any form, even classical trigeminal neuralgia. Now, when it comes to the younger population, the bilateral or side-alternating unilateral pain, they need to be scanned. When it comes to those forms that overlap between the trigeminal autonomic cephalalgias and trigeminal neuralgia then again, investigation needs to be organised. Again the MRI scan seems to be the best one. CT scans are quite useless in the sense that you may if you think that you’re looking for a tumour, for example, of the posterior fossa sometimes you can see that on a CT scan if it’s big enough. However, if you want to look for the more detailed structure of the posterior fossa of the brain stem, and then you definitely need that MRI. So if you come across someone with TN, with a CT scan I would not be happy, I would still continue the investigation with an MRI.
Dr Jessica Briscoe [00:21:39] OK, so I mentioned carbamazepine already, which is probably what most GPs would reach for, but what is the best way of managing it.
Dr Giorgio Lambru [00:21:56] I think in general, I say that, which is slightly away from the treatment, it is really important that the diagnosis is made.
Dr Jessica Briscoe [00:22:04] Yeah.
Dr Giorgio Lambru [00:22:05] Because you have in a- I saw a patient a couple of days ago where the GP thought it was classical trigeminal neuralgia and actually the pain responded to very low dose of carbamazepine, which is a dose- it’s used in primary care very often. But then I- the patient came to me and I did some other investigations which we can go and talk about later. I figured out that it was a dental problem. And so we sorted out the dental cause and the pain never came back and the person was able to discontinue the medication without having any relapse. So although, going back to the carbamazepine, although carbamazepine is considered the drug of choice and it works pretty well, we say about 70-80% of patients, the response to carbamazepine doesn’t confirm the diagnosis of trigeminal neuralgia. And alongside that, the presence of a vascular compression of the trigeminal nerve on the site of the pain, in the MRI scan doesn’t confirm the diagnosis. So the diagnosis is purely clinical. And when it comes to paroxysmal nerve pain in the trigeminal territory, before you diagnose someone with trigeminal neuralgia any clinician needs to make sure that they rule out other potential sources: dental, temporomandibular joint, sinus at least before they consider the condition as a possibility. Going back to your question, I think yeah carbamazepine- very good question. Quite a few randomised controlled trials, very old studies. The problem with carbamazepine is that it interferes with other potential medication so elderly patients normally are on other treatments for heart arrhythmia, high blood pressure, cholesterol, diabetes and so forth. So any clinician needs to make sure that there is no interference and also the tolerability has been fine before. So a significant proportion of patients will have to discontinue the treatment because of predominantly, we call them cerebellar side effects so unsteadiness, tremor, dizziness, double vision, drowsiness which are typical of this sort of class of medication. So very good treatment, poorly tolerated. And if carbamazepine is not tolerated by the patient, then of course we can use other drugs. The class of medication that works well for trigeminal neuralgia are the sodium channel blockers. So these antiepileptic drugs that modulate the ion channels, especially the sodium ones which are expressed on the peripheral nerve end of the trigeminal nerve and the trigeminal ganglion. So by damping down the activity of these nerves you essentially reduce the firing of the nerve and the transmission of pain information to the brain. Amongst these drugs, oxcarbazepine is similar as a variant of carbamazepine and is meant to be better tolerated and is meant to not interfere as much with other medication. Let’s think about anticoagulants, for example, warfarin and so forth, so it can be quite advantageous for certain patients. And it’s quite effective. The other one that I really like but the titration- the increments of the dose is quite slow, is lamotrigine. It is very effective as a drug because it’s very well tolerated, so it doesn’t cause drowsiness and all the other symptoms. However, it can cause sometimes a nasty skin rash, which happens in about 1 in 10 and needs to be taken into account when this drug is given.
Dr Jessica Briscoe [00:25:51] OK, yeah. The other one that I always sort of use, but I think that’s probably just because I use it for everything, is amitriptyline. Some people have kind of- it’s just generally very well tolerated. And it’s something that I think in general practice we’re quite comfortable with. It actually wasn’t when I looked- again when I was looking into this, I couldn’t really see any evidence for its use at all. But that’s I mean, like with amitriptyline and everything to be honest.
Dr Giorgio Lambru [00:26:16] So I mean, you’re right. So there are some drugs: amitriptyline, nortriptyline, gabapentin, pregabalin are meant to work better for people with neuropathy, so neuropathic pain. So if you have a trigeminal neuropathic pain due to a dental treatment that damaged the nerve endings or due to a sinus operation, or if you have sort of trigeminal pain triggered by temporomandibular joint dysfunction, so constant pain, dull, burning with superimposed stabbing shooting pains, which is what- and some other sensory symptoms like dysaesthesia and allodynia, which are very common symptoms of any neuropathy then amytriptyline/nortriptyline so the tricyclics and the gabapentinoids work quite well. If you have the paroxsymal pure classical on and off pain without any background, lingering constant pain then the sodium channel blockers so carbamazepine, oxcarbazepine, lamotrigine other people use phenytoin, for example, they tend to be more effective but you’re right, sometimes they’re not as well tolerated then amitriptyline can be a much easier drug to manipulate in primary care.
Dr Jessica Briscoe [00:27:32] How about injections? Are there any injections that you can use for it? So again, things like Botox or can you use any kind of nerve block on it at all?
Dr Giorgio Lambru [00:27:42] So Botox has got quite a lot of evidence for trigeminal neuralgia and trigeminal neuropathic pain, so trigeminal neuralgia is not an indication- so you won’t find it as an indication to use Botox but there are several randomised controlled trials. The quality is not considered great but there is a study coming out where the methodology of the study was quite robust. So hopefully that will shed some light on the role of Botox in trigeminal neuralgia. Yes. So Botox works really well for nerve pain. It is normally applied where the trigger points in trigeminal neuralgia are. Quite often patients report that if they touch a certain area of the- normally it’s the corner of lip, the corner of the nose- the side of the nose that can trigger an attack. So applying Botox under the skin in that area, small quantities can be quite beneficial. The downside is, of course, Botox is a muscle, paralytic drug. People will report weakness classically, normally a few days to a few weeks. But if there are no other medications and surgery for trigeminal neuralgia is not indicated for a variety of reasons then Botox can be an option. In terms of nerve blocks- so if you have someone with V2 trigeminal neuralgia, we’ve been using ultrasound guided blocks and there is a study showing that if you block the area around the cheekbone, with local anaesthetic essentially, a few times then you can find this accumulative effect by which the pain subsides for weeks, sometimes months so that’s something that can be used. When it comes to more invasive procedure. Again, there are procedures that are not destructive, but they target the trigeminal ganglion, the bundled nerve before the nerve sort of divides itself into the three branches. But this goes into the slightly more invasive procedure, I would say, not something that can be done easily in the clinic.
Dr Jessica Briscoe [00:30:02] Probably good to move on to the- you mentioned surgical options a couple of times. Tell us a little bit more about that.
Dr Giorgio Lambru [00:30:08] So trigeminal neuralgia is one of these fascinating conditions where, you know, we seem to say that for neurological pain or for headache and facial pain we don’t have a cure. That’s what we say to our patients.
Dr Jessica Briscoe [00:30:21] I’m always saying that.
Dr Giorgio Lambru [00:30:23] We will likely be able to manage it, to make it quite a lot better, but we don’t have a cure. We don’t have a cure for migraine, cluster headache and so forth. For trigeminal neuralgia, the situation is slightly different in the sense that there is this brain surgery called trigeminal microvascular decompression, which is the closest treatment we’ve got to a cure, essentially. And the surgery is considered a relatively easy surgery for neurosurgeons. You know, this is what experienced neurosurgeons normally say, it’s still a brain surgery. So essentially what happens is the people with MRI evidence of a compression of the trigeminal nerve on the side of the pain by a vessel, normally it is an artery because the artery, the arteries are more likely to exert pressure, whereas a vein, normally exerts negative pressure. So it’s essentially a collapsed structure. It Is not supposed to pulse on the trigeminal nerve. So if you find that on the scan, your patient doesn’t respond to medication, the trigeminal neuralgia is really interfering with their quality of life. Quite a few patients become suicidal because of the disability that this condition can bring, you can imagine every time you try to eat and drink you can’t, so people can lose a lot of weight, they can’t drink properly. So it can have a devastating effect on the day to day life. So then surgery could be an option. And so what we normally say is that make sure that the diagnosis is right, because microscopic decompression only works if you have classical purely bouts of trigeminal neuralgia. If you have trigeminal neuralgia with concomitant constant background pain or type two or atypical trigeminal neuralgia there are various names but the concept is- the bottom line is the same. If you have trigeminal neuropathic pain, if you have temporomandibular joint dysfunction, the surgery is likely not to work. Or it will only work for a small period of time and you expose the patient or the sufferer to a potentially life threatening brain surgery. I say that because normally the surgery is very well tolerated in experienced hands. But there are rare, potentially devastating side effects because of where the trigeminal nerve is but if you are aware of that and we’re talking about hearing loss, facial palsy, meningitis, stroke and even the risk of death, it is very low but it’s been reported. But if you look at the positive side of things, if you’ve got a clear diagnosis of TN, a good compression of the nerve, the data show that the patient has got a 70 to 80 percent chance of becoming a remaining pain free after 15 years.
Dr Jessica Briscoe [00:33:30] Probably the last thing we’ll probably talk about TN because i’m very aware we have a few other topics to talk about but it is an important thing to talk about anyway. How about peripheral nerve stimulation? Is there any scope for that at all for trigeminal neuralgia?
Dr Giorgio Lambru [00:33:44] So that’s a good question. So I would say no in the sense that there are some patients anecdotal reports, I would say, of patients treated with stimulation of the trigeminal ganglion with peripheral implanted electrodes, but the evidence I’m not so- the surgery’s rather complicated to do and the data are not there. So, you know, we don’t advise that at the moment. There are a couple of cases of occipital nerve stimulation, which is quite a bizarre treatment for trigeminal neuralgia. But if you think about the fact that, you know, modulating the occipital nerve, which is part of the trigeminocervical complex, potentially it could also modulate trigeminal pain, then that would make sense, although occipital nerve stimulation is more frequently used for difficult to treat cluster headache, SUNCT and SUNA, paroxysmal hemicrania and so on and so forth. So I will say I got a report from that. We have been studying the use of high cervical, high frequency spinal cord stimulation so trying to stimulate the bottom part of the trigeminal nucleus in the upper part of the cervical spine. So trying to be as away as possible from the peripheral branches of the trigeminal nerve, because any application of electricity in a very sensitised area can actually make this worse.
Dr Jessica Briscoe [00:35:30] Yeah.
Dr Giorgio Lambru [00:35:30] So what you do in this case, you try to stay away and try to modulate the root of the problem, which is the trigeminal nucleus essentially. And that, again, in a research setting has been shown to be relatively effective. But again, we’ve got a small cohort of patients. You still need to understand what role this has in people. I will say in general, peripheral nerve stimulation can be used in people that either don’t respond to microscopic decompression or they don’t have a vessel compressing on the nerve or they can’t have the surgery because of comorbidity, age or other problems. So the role is quite marginal, but there are some new studies that are actually showing quite promising results.
Dr Jessica Briscoe [00:36:18] Great. The other thing we kind of wanted to talk about, and you’ve mentioned a couple of times, are SUNCT and SUNA, which are obviously very rare, even rarer than trigeminal neuralgia, which I do come across every so often. But generally speaking, we tend to identify it at the National Migraine Centre, but we wouldn’t particularly try and treat it, we’d refer on. Maybe you can explain a little bit about what they are.
Dr Giorgio Lambru [00:36:41] So SUNCT and SUNA are acronyms of short lasting one sided so unilateral neuralgiform, which means paroxysmal nerve pain, headache attack with conjunctival injection and tearing, so C and T, which is essentially watering of the eye and redness of the eye on the same side as the pain. SUNA is a broader variant of SUNCT where any of the commonly present cranial autonomic features that we see in the other TACs can occur. So you get a person with SUNA like phenotype and just runny nose that technically won’t be SUNCT it’ll be SUNA. But if they’ve got conjunctival injection and tearing in the same patient then you diagnose it as SUNCT. I mean, this is a more like a philosophical issue rather than practical issue.
Dr Jessica Briscoe [00:37:36] Yeah, I was going to say is there any particular reason why they’re separated? Because I’ve always wondered this.
Dr Giorgio Lambru [00:37:42] Yeah. So to create confusion would be my guess. I hope you’re not recording that. So joking aside, I think the person that discovered SUNCT in the late 70s, early 80s called it- so described essentially the condition and he also included rhinorrhea in the condition so runny nose, but then International Headache Society Classification committee decided to create this name, this acronym, but if you look at whoever discovered it, which is Professor Sjaastad, he mentioned the rhinorrhea, technically, the names should have an ‘R’.
Dr Jessica Briscoe [00:38:25] Yeah.
Dr Giorgio Lambru [00:38:26] To make it even more unpronounceable. But then what the committee decided is that so they found out that actually many people will have one autonomic feature, not both of them. So they proposed the name SUNA. So SUNCT and SUNA belong to the TAC group. They are similar to the other trigeminal autonomic cephalalgias because they present on one side of the head, they normally involve the eye, they occur with multiple daily attacks, which are short lasting. If you look at the trigeminal autonomic cephalalgia spectrum, SUNCT and SUNA stay on the opposite edge of the spectrum compared to cluster headache. The reason is because they are characterised by a high number of daily attacks, quite often hundreds and because their duration is much shorter than cluster headache. So it’s in the range of seconds to minutes, if you look at the classification, we say between 1 second to 5 to 10 minutes.
Dr Jessica Briscoe [00:39:26] OK.
Dr Giorgio Lambru [00:39:26] And the attacks can sometimes be counted as in the sense that patients lose track because they can have them several times per hour during the daytime and sometimes at night. Now, the similarity to the other TACs when an attack occur, is normally associated with one of the cranial autonomic features that we said. But they present substantial differences from the trigeminal autonomic cephalagias and that’s what has been causing difficulty in classifying them and in diagnosing them. And the differences are the fact that the pain is a typical nerve type pain, which is quite similar to the trigeminal neuralgia type of pain, it’s just that it happens around the eye, behind the eye, radiating to the temple. Now, about 30 percent of patients with SUNCT and SUNA will have pain radiating to the second and third division of the trigeminal nerve just to make things more complicated. And the other difference compared to the TACs are triggers, as you know, alcohol is a big trigger for cluster headache. In terms of SUNCT and SUNA, alcohol is not reported to trigger the pain, but stimulation of the skin like we’ve just seen in trigeminal neuralgia, so eating, chewing, shaving, brushing your teeth can bring on an attack. And that’s not something that you see in the TACs normally. So it’s unique for SUNCT and SUNA and it overlaps with trigeminal neuralgia. So all these sort of similarities with the TACs and differences and similarities with trigeminal neuralgia has created confusion in the field. So when you say, right, we know that SUNCT and SUNA are rare, I think we need to add that they are probably misdiagnosed.
Dr Jessica Briscoe [00:41:19] Yeah, I think, to be honest, I think they probably are completely underdiagnosed because I would argue that probably 90 to 95 percent of generalists would never even have heard of them unless they had a patient that’s seen a headache specialist or neurologist who’s written it down.
Dr Giorgio Lambru [00:41:35] That’s right.
Dr Jessica Briscoe [00:41:36] And I certainly hadn’t until I started working in headache medicine.
Dr Giorgio Lambru [00:41:39] The conditions that can mimic SUNCT and SUNA and normally are diagnosed with something else. For example, I give you just a few examples. So think about atypical trigeminal neuralgia. So or type 2 trigeminal neuralgia or essentially TN with concomitant constant facial pain that quite often can fulfill the features of SUNCT and SUNA. Because SUNCT and SUNA according to my study, almost up to 50 percent of patients will have a background pain on the same side of the head in between the paroxysmal attacks. So that can easily be misdiagnosed as type 2 TN. And then because it doesn’t respond very well to carbamazepine as a typical trigeminal neuralgia does, and sometimes you don’t find the nerve compression and so forth, then people either diagnose them as atypical facial pain or atypical trigeminal neuralgia then if you phenotype them properly and ask them about their cranioautonomic features, then you find out that they’ve got associated symptoms. And also normally the demographic are slightly younger compared to the common age it was for trigeminal neuralgia. That’s a common mistake, which I mean, it’s nobody’s fault. It’s just that the condition is quite young and it hasn’t been around for a long time. So people need to be aware, they need to be educated about the presentation of this condition. But that could be one possibility. The other possibility is misdiagnosing them with one of the other TACs.
Dr Jessica Briscoe [00:43:15] Yeah, it’s actually interesting because you were saying about the fact that you have to ask about autonomic symptoms. I definitely found that to be true because people will not volunteer that at all. And the other thing that we talked about a lot with facial pain being misdiagnosed as sinusitis, not that I don’t think that chronic sinusitis exists. I think it’s probably massively overdiagnosed. Because people think that if you have a blocked nose or runny nose, it must automatically be the sinus. And I think if you scan a lot of people, if you do a CT sinus, those people have inflamed sinuses. And so I suspect it’s the fact that a lot of patients think that it’s sinusitis because that’s where the pain is and the symptoms are having. But I also think that we as healthcare professionals need to be better at asking about the autonomic symptoms with any headache, actually. And I think we’d pick up far more features of it.
Dr Giorgio Lambru [00:44:09] Yeah, that’s absolutely right. And I see a fair amount of people with SUNCT and SUNA, or even with cluster headache they actually were diagnosed with sinus problems. And as you say, if you do CT scans of the sinuses you would always find some wear and tear, some polips, inflammation but that normally doesn’t cause this type of pain. And the problem is that if you- because of the intensity of the pain, sometimes patients beg for some invasive treatment becasue they want to get rid of the pain, rightly so. And as some inexperienced physicians or surgeons will happily operate sometimes, and then you end up seeing your patient down the line after having like three, four or five sinus operations with the same symptoms and sometimes you can add neuropathic pain on top of that due to the scarring tissue that was caused by the operation. So then you’re left with the base-line condition, which hasn’t been treated and something on top, which can make the phenotyping exercise have more problems. But yeah. So it’s really important to understand that if you have someone with facial pain, they may feel it’s sinisitus because of the cranial autonomic features, think about the trigeminal autonomic cephalagias, think about cluster headache, but also SUNCT and SUNA if the pain is more like a nerve pain and if the attacks are very short lasting.
Dr Jessica Briscoe [00:45:38] So how would you manage SUNCT and SUNA?
Dr Giorgio Lambru [00:45:41] So in terms of investigation, again, being rare conditions, I normally scan them all. OK. In terms of the pattern, the majority of cluster, SUNCT and SUNA patients will have a chronic pattern and this is not similar to the pattern of cluster headache, but also quite different from the trigeminal neuralgia pattern which as we said before, is more episodic. So again, one insight is that if you find someone that has similar features of trigeminal neuralgia but the pattern is chronic so there is no remission, think SUNCT. Because SUNCT is 80-90 percent of the time chronic, no remission or just a few days. So going back to the investigations, because SUNCT-like pain has been shown to be caused by disease of the brain, an MRI scan is essential. You can find an aneurysm, you can find multiple sclerosis type of alteration, you can find a tumour of the nerve and so an MRI needs to be carried out. And then again, there is new research showing that in people with SUNCT and SUNA, there is a high proportion of them with a neurovascular compression, very similar to trigeminal neuralgia. The figures in our study was about 60 to 70 percent, whereas in trigeminal neuralgia it ranges between 60 to 80-90 percent. I mean, there is a clear overlap here. So when you do a scan, if you are interested in managing your patient long term, also add the trigeminal nerve sequences similar to trigeminal neuralgia. So the protocol will be exactly the same: MRI brain, trigeminal sequences plus contrast. And that would give you a very good understanding of whether there is any other driver for the pain or whether this is a idiopathic condition. So the other aspect of the brain or when it comes to investigation that need to be taken into account is the pituitary gland. The pituitary gland is a gland that sits outside the brain in the head and is responsible for secretion of all of the active hormones. Interestingly, there has been a clear association between SUNCT and between pituitary tumours. The so-called adenomas, which are normally benign tumours, can produce or secrete hormones or be non-secreting. And quite often a pituitary adenoma can cause a SUNCT-like type of headache. So again, when you assess someone with SUNCT and you want to investigate them, do an MRI and trigeminal sequences and pituitary gland sequences, and by doing that, you will rule out all the possible causes of SUNCT. We know that if you have a pit tumour and you you have a SUNCT type phenotype when the tumour goes with surgery or with pharmacological treatment, then the SUNCT pain goes as well or improves significantly. In terms of other investigation, again, if you find a pituitary adenoma you need to do a blood test and follow the hormones, an MRI with the sequences that I just mentioned would be the way forward in terms of investigation. In terms of management so treatment because of the short duration of the attacks, symptomatic treatment, acute treatments are not useful. And if you compare it to the other attacks or TACs, like cluster headache where acute treatments are essential. This is a completely different condition. It Is managed more like trigeminal neuralgia, so we use nerve modulators essentially. It’s clear from open-label research- open-label trials that sodium channel blockers are the treatment of choice. Lamotrigine is the best treatment for reasons that are still unknown but that would be my preference. And if you look at the research that’s the best treatment. Other effective treatment, oxcarbazepine has emerged as a good treatment. Topiramate works quite well. In some patients, gabapentin and pregabalin also have a role. So an overlapping management strategy with trigeminal neuralgia with preference for lamotrigine as a first choice.
Dr Jessica Briscoe [00:50:27] Great. Quite like to quickly talk about atypical facial pain as well. Just briefly if we can because I’m very aware that I’ve kept you here for quite a long time talking about everything. But the other thing that I come across a fair amount is atypical facial pain. When I was reading some papers that were basically saying that it’s a dreadful name for it because it’s probably actually a collection of disorders that haven’t been fully identified yet. So I mean, I think I’d read about it as being four types of- four sort of symptom complexes, including some things I’d never particularly heard about, so I’d had a bit about burning mouth syndrome, I’d heard about the phantom tooth pain. But a couple of other things like the atypical facial neuralgia and myofascial face pain. What are your thoughts on the atypical facial pain? Do you think it is actually an entity on its own, or do you think it is one of these things that’s been sort of where people don’t really know where to look now and they just get lumped into that category?
Dr Giorgio Lambru [00:51:22] Yeah, yeah. So I mean, this is one of the most fascinating group of disorders, I think, for facial pain and headache specialists. Unfortunately, neurologists are not very interested in that. They’re not very interested because there isn’t the biology, there isn’t a clear biology, there is a treatment that makes sense and you find nothing on the scan. But we are trying to do quite a lot of research on that and there is new research coming on in neurology and I’m sure that will bring some news in the mechanism of this disorder. As you were saying, that term is an umbrella term, it definitely includes some neurovascular and neuropathic conditions. When it comes to the condition that you just listed, they all have some kind of biology. And if we start with temporomandibular joint disorder. So we know that there are three different types, the myofascial one is essentially a primary disorder where you don’t find any pathology of the temporomandibular joint so operations are not useful. And it is a condition that is quite often associated with migraine.
Dr Jessica Briscoe [00:52:38] Yeah.
Dr Giorgio Lambru [00:52:38] So you can consider it as a functional disorder like migraine is. But what normally happens is that the two conditions are linked together so the patient normally has both. And if you treat one, the other one gets better. So quite often you treat the migraine and the TMJ, temporomandibular joint, the myofascial variant gets better. So when it comes to a typical odontalgia, that’s essentially a form of neuropathic trigeminal pain. Quite often happens when you- it can be more somatic so it could be due to dental treatment and that’s quite often what we see in clinic. Sometimes it can be idiopathic so you’ve got nerve pain in the nerve endings, normally second or third division of the trigeminal nerve. Now there are new fancy names for a typical odontalgia, if you ask my colleague, they hate that name but the essence is exactly the same. So it is a neuropathic pain, either post-traumatic or idiopathic meaning there are no underlying causes and is treated as a neuropathic pain. The features are quite clea so the diagnosis is quite easy. The recommendation is to try and not sort of expose your patient to dental treatment because the nerve area is very sensitised so the more you go there and remove teeth, the root canal, the more that they will get worse. The term the phantom tooth pain does actually makes sense. So you don’t have a pathology in the area, but the brain makes you feel that the area is still inflammed and should be painful.
Dr Jessica Briscoe [00:54:29] Yeah, it’s a bit like- when I read about it, it seemed to be like a phantom limb pain, which also makes sense so phantom tooth pain sort of sounds perfect for it.
Dr Giorgio Lambru [00:54:39] When you want to explain it to your patient, that’s a good terminology. And with regard to burning mouth syndrome, i think that’s also quite interesting because it is, again, a form of focal neuropathic pain. But again, there are three different variants and the biology of this variants is slightly different. So there are some situations where burning mouth syndrome is recognised as dopaminergic pathology so there’s a problem in the dopaminergic network and quite often it can be associated with other pathologies of the brain that lack dopamine, like Parkinson’s disease, for example. And so there are variants for burning mouth syndrome that are quite fascinating in terms of trying to understand the mechanisms, but essentially is a form of nerve pain. We are conducting with King’s College, quite a lot of research at the moment on burning mouth syndrome so we will have some more data or try to understand exactly what the biology and all the potential treatments are and what the mechanism- so what happens in the brain of people with burning mouth syndrome, so it’s coming out. Now, the real mystery is the persistent idiopathic facial pain.
Dr Jessica Briscoe [00:55:58] Yeah.
Dr Giorgio Lambru [00:55:58] What is actually also labelled as atypical facial pain as it comes, so you have ruled out all these other subtypes. you have ruled out trigeminal neuralgia, sinus, dental pathologies, eye problems and the patients still experience this pain, which is normally quite vague. So the patient normally would not tell you ‘I’ve got pain in this particular region’, it is quite widespread in the trigeminal territory, can be uni or bilateral. It’s normally not neuropathic in terms of features. There are very few neuropathic features, it is more like a dull, continuous pain and it doesn’t respond to absolutely anything. So that’s the persistant idiopathic facial pain. Now, that’s where the research should be concentrated because we have no idea what we’re doing with that. Normally we treat them either- because the current understanding is that the biology is mixed neurovascular so migraine-like and neuropathic. Normally we treat it initially as migraine, then as neuropathic pain but normally, we get nowhere. And that’s something that really causes troubles to patients because the pain is there and to clinicians. Now, there is this understanding that atypical facial pain is often comorbid with psychiatric conditions, anxiety, depression, personality disorder, and that’s possibly true. However, I think if we really want to do justice to this patient and try to understand better what the biology is, I think we should not presume that this is a stress or psychiatric condition.
Dr Jessica Briscoe [00:57:41] I mean, I always think with this type of pain, it’s a bit of a chicken and egg, which one is going to come first. If you’re having a type of pain that no one can identify, you’re probably going to be a bit stressed and depressed about it. So I always find that- people always say this with migraine as well, ‘it’s because you stressed’, well, no, I’m stressed because i have migraine all the time. It’s probably exactly the same with this type of facial pain. So, yeah, I agree with you on that. I think you have to be a bit careful.
Dr Giorgio Lambru [00:58:05] Very careful with the difference that in migraine we’ve got treatments. Doctors can give you the right treatment you can feel better. With this because you don’t, then you actually, you know, get into this situation where they feel that they’ve done something wrong, they feel that it actually is on their head, if you allow me this term, and then they start this sort of vicious cycle where they do get depressed and think that nobody can help them and there is frustration out of it.
Dr Jessica Briscoe [00:58:35] Absolutely. Great. I think we’ve probably covered, well, there’s always more that we can cover in these things, to be honest. But thank you so much for talking to me about this today. I think people find it really, really interesting because it’s a topic that I actually think there’s not that much patient information out there about. So hopefully, hopefully people will find it useful. Thank you, Giorgio.
Niamh [00:58:58] Hi, everyone. Today I’m joined by Nicole, who’s here to share her migraine experience and her experience with facial pain. So Nicole. When did your experience with migraines start?
Nicole [00:59:09] So I had them as a teenager, but I think they were mainly hormonal. They went away and came back around 10 years ago. Migraine without aura. And I’ve suffered ever since sort of had peaks and troughs of where they’ve been manageable and then times when they’ve gone off the scale getting really in the way of my life. So, yeah, about ten years.
Niamh [00:59:33] And when you experience these migraine attacks, did you always experience them with facial pain or is it something that came later?
Nicole [00:59:40] The majority of the time I had facial pain initially it was towards the end of the migraine, but more recently it’s been during the migraine as well.
Niamh [00:59:51] And so for some of our listeners who may not experience facial pain, could you may be try to describe how this feels and what exactly it is.
Nicole [01:00:00] Yeah, absolutely. I find that I don’t know if you’ve ever suffered with neuralgia, which is sort of a facial pain. Sometimes you get it when you’ve had a cold or flu, it can feel a little bit like that. So there’s different degrees of it. I find I get a burning pain on the side around my temple by the side of my eye towards the top of my cheekbone. That’s quite an intense pain. Very hot and burning, really. Then it drops down towards my upper jaw and that’s like a more like an aching jaw. As if you’d had a bad dream and you’d be grinding your teeth and it’s sort of left an after effect. I often get that it’s like a throbbing, dull pain. And sometimes I can find that I get a little bit with pins and needles as well, which almost, as I say, like sinusitis or neuralgia where you’ve got a lot of pressure in the upper part of your face. That’s what I could sort of to someone who’s never suffered with it before that’s how I describe it.
Niamh [01:01:08] And with your migraines now, how do you currently manage them?
Nicole [01:01:12] So it’s been a bit of a rollercoaster ride with migraines over the past year. And I was diagnosed with chronic migraine last year. So you can have episodic or chronic migraine. So you’re probably aware but episodic is less than 15 headache days a month and chronic is 15 plus. I’m in the 15 plus category and that can be headaches of all degree. But I had a repeat MRI done in February this year which revealed that I got a lacunar infarct, which means that I believe it was around last October that I suffered a mini stroke, which has left some slight damage in my brain, which I wouldn’t have known about if I had not had an MRI. So that’s drastically reduced the medication that I have. So most migraine sufferers will take triptans. Sumatriptan is probably one of the most popular and I’ve tried all of the preventative medications that the GP can offer, but none of them- I couldn’t tolerate any of them. The side effects were worse in some some respects. So I can’t take triptans anymore. And I’ve recently just had my first session of Botox.
Niamh [01:02:30] Oh, fantastic.
Nicole [01:02:31] Yeah. So not for the faint hearted if you don’t like needles. But I have to say the Botox nurse was fantastic and if anyone is having it, they shouldn’t be scared because she was so quick. It’s too early to say if it’s worked or not. I think the research suggests that the second round is usually more effective because I’ve still been experiencing migraines. I had one last weekend, which was a three day affair. So at the moment I’m limited as to taking paracetamol and over-the-counter painkillers to try and control the effects until hopefully the Botox works. So I was taking almotriptan and more lately Sumatriptan injections before I found out I got the lacunar infarct. So yeah, I have to say that Sumatriptan injections were fantastic. But because of the vascular risk factors that I have now, I can’t take them. So I’m hoping that Botox is the one.
Niamh [01:03:32] Yes. Fantastic. Well, thank you so much for joining us today, Nicole. I’m sure our listeners are grateful for hearing about your experience with migraines, especially with the facial pain. So thank you.
Nicole [01:03:44] You’re welcome. Thank you. I hope it helps somebody.
Dr Jessica Briscoe [01:03:49] Thank you for listening to this episode on migraine and facial pain. If you’ve enjoyed listening to this podcast and hopefully some of the others in our two previous series and earlier in this third series of the Heads Up podcast, please do donate because we are a charity and we do rely on your donations to keep running and keep seeing people in our clinic. Please visit our link on the Virgin Money Giving Page, all of the information is in our blurb below.
[01:04:23] 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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