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Transcript – Programme 25: A Heads-Up on Migraines

How to man­age migraines: patients and experts share their thoughts

To lis­ten to this pro­gramme, please click here.

Nine out of ten peo­ple report a life­time his­to­ry of head pain and 2012 has been des­ig­nat­ed the Glob­al Year Against Headache by the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain. Evans finds out more about migraines from Dr Giles Elring­ton of the Nation­al Migraine Cen­tre in London. 

We also hear from peo­ple who live with chron­ic migraine about their expe­ri­ences, what trig­gers their episodes and the treat­ments they’ve tried, and Heather Sim tells us the steps to take to get referred to a migraine clinic.

Issues cov­ered in this pro­gramme include: Migraines, headache, trig­gers, patient expe­ri­ences, fatigue, nau­sea, neu­ro­log­i­cal con­di­tions, trigem­i­nal auto­nom­ic cepha­lal­gias, clus­ter headaches, neck pain, pri­ma­ry and sec­ondary headache, dai­ly rou­tine, blood sug­ar, sleep pat­tern, diary keep­ing, refer­ral, brain dis­or­der and visu­al auras.

Paul Evans: Hel­lo, I’m Paul Evans and wel­come to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern – the UK char­i­ty that pro­vides infor­ma­tion and sup­port for those of us who live with pain. This edi­tion is made pos­si­ble by Pain Concern’s sup­port­ers and friends. More infor­ma­tion on fundrais­ing efforts is avail­able on our Just Giv­ing page, and that’s at painconcern.org.uk.

Keri Bucholz: I get very sen­si­tive to smell and to lights. I get a pain behind the nose and behind the eyes…

Dr Giles Elring­ton: Is it a dis­or­der of the mood, of the psy­che? No.

Bucholz: And I get real­ly tired…

Elring­ton: Is it a dis­or­der of the neck? No.

Bucholz: After that, I usu­al­ly get real­ly nau­se­at­ed. Then the headache will hit, and the pain that will come with it.

Elring­ton: Is it a dis­or­der of the sinus­es, of aller­gy, of the heart, the blood ves­sels? No, it’s a dis­or­der of the brain.

Evans: Now this year, 2012, has been des­ig­nat­ed Glob­al Year Against Headache by the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain, work­ing with the Inter­na­tion­al Headache Soci­ety. And that’s quite appro­pri­ate because one in every two of us will have some form of headache dur­ing the year and a stag­ger­ing nine out of ten will report a life­time his­to­ry of head pain, with the most severe­ly dis­abled three per cent of those hav­ing chron­ic migraine and chron­ic ten­sion-type headaches at least 15 days per month. And that makes it the most com­mon of all neu­ro­log­i­cal con­di­tions and among the most fre­quent of com­plaints seen by GPs.

Chris White­house: They go in phas­es and when they’re worse, they’re typ­i­cal­ly every oth­er week­end or every week­end, occa­sion­al­ly. I’ll get up on a Sat­ur­day morn­ing and I’ll fair­ly soon have a pret­ty bad headache which will most­ly ren­der me pret­ty inca­pable for the rest of the week­end and then it’ll clear up on the Sun­day night and I’ll be up back off to work again. There’s also a stom­ach ele­ment – that I could feel a bit nau­seous – and again if I think about that it’s not par­tic­u­lar­ly extreme, most­ly, although some­times it caus­es me to throw up. I also some­times feel very cold, so I’ll put on lots of clothes and sit lean­ing against the radi­a­tor. So the over­all thing is that I feel com­plete­ly drained of ener­gy and I have no abil­i­ty to actu­al­ly get up and do something.

Evans: Now I was brought up to believe that a headache is just some­thing we have to grin and bear, but a migraine, as described there by Chris White­house, is some­thing on an entire­ly dif­fer­ent plane. So a few weeks ago I vis­it­ed the Nation­al Migraine Cen­tre in Lon­don, where I met its Med­ical Direc­tor, neu­rol­o­gist Dr Giles Elrington

Elring­ton: Headache is a symp­tom and I think that peo­ple go to doc­tors or phar­ma­cists with a symp­tom, not with a diag­no­sis. Gen­er­al­ly speak­ing, when things aren’t going right, the first thing you want to do is to go back to the start and rethink the diag­no­sis. So one of my big issues is to be symp­tom-focused, not diag­no­sis-focused. Hav­ing said that, almost all headache is migraine. There is an excep­tion: there are a group of headaches called trigem­i­nal auto­nom­ic cepha­lal­gias, like clus­ter headache and I think most experts in the field think that that’s a sep­a­rate dis­or­der, but there is a mav­er­ick view, that might be right, that says it’s all on a continuum.

But if we set that aside, then there are basi­cal­ly two types of pain in the head. And if we just get this out of the way ear­ly on – doc­tors who prac­tise in head pain call any feel­ing you don’t like above the shoul­ders ‘headache’. Not all patients like that: ‘It’s not a headache, doc­tor, it’s a pain in the head.’ It’s actu­al­ly real­ly unhelp­ful to get bogged down in words, so we call it all ‘headache’, whether it’s a sharp pain in the lip, or a com­press­ing feel­ing all around the cra­ni­um, it’s all ‘headache’. Pain in the neck is a headache.

So, there are two types of headache: pri­ma­ry headache and sec­ondary headache and, using a com­put­ing anal­o­gy, pri­ma­ry headache is a soft­ware prob­lem and sec­ondary headache is a hard­ware prob­lem. So in pri­ma­ry headache, the dis­ease is a change in the pain path­ways, the elec­tric activ­i­ty of the pain nerves is switched on when there is no good rea­son for it to do so. It’s rather like the oil light in your car com­ing on when the sump is full, or the fire alarm going off when there’s no fire. So it’s giv­ing you a mes­sage as if some­thing is hap­pen­ing, but the prob­lem is the mes­sage, not the thing it appears to be telling you.

Now, peo­ple wor­ry when they have pain in the head, when they have headache, that there is a brain tumour or a trapped nerve or ‘Is it my neck, doc­tor? Is it my sinus­es, is there some struc­tur­al under­ly­ing cause?’ And the answer is ‘hard­ly ever’. And so the longer you have pain in the head, the less like­ly there is to be some­thing else wrong, for there to be a hard­ware prob­lem, some­thing bust.

Anoth­er way of look­ing at it – with the sec­ondary headache, you could make the diag­no­sis with­out talk­ing to the patient if you did the right test. So you could see the sinusi­tis on a scan or an x‑ray, with an endo­scope, you could iden­ti­fy the trapped nerve with an elec­tri­cal test or an MRI or some­thing like that. But only a tiny minor­i­ty of headache is the sec­ondary headache, or a hard­ware prob­lem, and the sim­ple rule is that if you have a sec­ondary headache, oth­er stuff goes wrong apart from the pain. So if you have a brain tumour, which is often the big con­cern, the main symp­tom is epilep­sy – hard to over­look. And then the oth­er big group of symp­toms with brain tumours is a pro­gres­sive loss of function.

But if we then come back to what I large­ly prac­tise in, which is pri­ma­ry headache, that is, an error in the way the brain deals with pain, migraine is the big group. Now you can use the word migraine in, real­ly, two dif­fer­ent ways. The old-fash­ioned way is to use migraine to describe the nature of the attack. But you can use the word also to describe the under­ly­ing con­di­tion, the ten­den­cy to migraine. So it’s a bit like hav­ing acne – you have a spot, a zit. But there are times when peo­ple with acne don’t have spots and zits, briefly – I remem­ber well.

So you can use the word in dif­fer­ent ways, and in many ways it doesn’t mat­ter how you use the words, as long as we all stick to the same def­i­n­i­tion. But almost all recur­ring, chron­ic, dis­abling, trou­ble­some headache is migraine. And most headache experts these days are not very keen on the old idea of so-called ten­sion headache or ten­sion-type headache as it became known and we see ten­sion or ten­sion-type headache as being a rel­a­tive­ly fea­ture­less form of migraine.

Now there’s a lot that we can do to help migraine. Jour­nal­ists often say, ‘Have you got a cure?’ I don’t think doc­tors cure very much. OK, I ‘m a neu­rol­o­gist and we have that rep­u­ta­tion, but think about it, what can doc­tors cure? We can con­trol a lot, and we can make an awful lot of things eas­i­er to bear.

Evans: OK, so I’m not going to ask you what the cure is.

Elring­ton: Thank you.

Evans: What is the management?

Elring­ton: OK, so the man­age­ment of the migraine begins with the diagnosis.

Evans: Dr Giles Elring­ton, Med­ical Direc­tor of the Nation­al Migraine Cen­tre in Lon­don. Chris White­house again:

White­house: I saw a doc­tor here, and he asked me a lot of ques­tions about how it occurred and if I could think of things that caused it. He then explained in quite detail how migraines work and how trig­gers work and how you can help by learn­ing your own trig­gers, which was real­ly help­ful. And he gave me some infor­ma­tion sheets that I took away.

Evans: You said that you’ve been told to learn to recog­nise your triggers.

White­house: Yes.

Evans: What were your trig­gers, how was that helpful?

White­house: My main trig­ger is to do with sleep. And I’m not actu­al­ly work­ing now. But when I was work­ing, typ­i­cal­ly I’d go to bed a lit­tle bit too late all through the week, so by Fri­day I was a bit tired and on the Sat­ur­day I’d have a bit of a major sleep-in. And it seemed to be weeks where I’d lived like that, fol­lowed by a par­tic­u­lar­ly heavy sort of sleep, that would be then fol­lowed by the migraine. So that’s my main trig­ger. I also think that I have to be care­ful about eat­ing sug­ar and actu­al­ly cer­tain types of cakes – I don’t know what ingre­di­ent it is, but there seem to be cer­tain types of cake which seem to trig­ger it. It’s par­tic­u­lar­ly the sleep thing that real­ly trig­gers it, but I think I get more sen­si­tive to them if I’ve been eat­ing sweet things, so if I eat a lot of jam, or choco­late or something.

Elring­ton: Once you’ve made the diag­no­sis, the first step is lifestyle mat­ters. Now what migraine likes is for the brain to be know­ing what’s com­ing. It likes reg­u­lar­i­ty, it likes rhythm, it doesn’t like sur­pris­es. So, peo­ple with… who are prone to migraine, need to have three meals, at least, every day. The one that many peo­ple skip is break­fast. Big mis­take! ‘Oh I nev­er skip break­fast, I have it after I get off the com­muter train.’ Wrong! You must have a fibre-con­tain­ing break­fast every day with­out fail before you leave home for work and you have some­thing for lunch – just a sand­wich or a roll is fine – and you have a meal in the evening. Snacks in between, ter­rif­ic, but many of us strug­gle a lit­tle bit with our weight, so it’s impor­tant to keep that snack­ing down, keep it nat­ur­al, keep to whole­foods, keep the fibre lev­el up. Why fibre? Because you need to main­tain a smooth blood sug­ar pro­file, rather than hav­ing big ups and downs through the day.

So the first thing in migraine is reg­u­lar­i­ty, first think about the diet, then think about your sleep­ing pat­tern. So migraine is wors­ened by too much or too lit­tle sleep. Ide­al­ly, you need to leave the alarm clock on sev­en days a week, so every day is the same. My patients with migraine who suf­fer at week­ends, as many of them do par­tic­u­lar­ly, leave the alarm clock on, get out of bed at the same time, get shaved, get washed, get dressed, be at break­fast at the same time, maybe even at the time that you’re sit­ting at your desk, 9 o’ clock, pos­si­bly 8:30, at work, that’s the time you’re doing the cross­word and you’ve got to fin­ish it in 15 min­utes, so you keep the stress lev­els the same.

Migraine is actu­al­ly more often wors­ened by the let-down from stress than by the time the stress is on. Keep it lev­el, don’t change it. And if you go, ’Oof, it’s the week­end, I can lie in, I can take it easy,’ that’s when the migraine come and hits your head.

The next thing is what treat­ment do you take as and when you have an attack? The sim­ple treat­ments for migraine are either aspirin in a large dose, 900mg, or ibupro­fen in a large dose, 600mg, prefer­ably dis­solved in water – and there are prepa­ra­tions of both which will do that – accom­pa­nied by an anti-sick­ness drug called dom­peri­done. Not Dom Pérignon, which is French cham­pagne, but it sounds almost the same and you can buy it over the counter and you can get a lit­tle pack­et of those. And you take two of those with either the aspirin or the dom­peri­done [sic. editor’s note: ibuprofen]

‘Oh, but I don’t feel very sick.’ Just take the dom­peri­done; the rea­son being to pro­mote the brisk absorp­tion of the drug because with gas­tric sta­tus in migraines, the drugs don’t get through. Add the dom­peri­done, and if you do vom­it you can have the dom­peri­done as a sup­pos­i­to­ry. Get the dom­peri­done in and the aspirin and the ibupro­fen. If that’s dis­ap­point­ing, there’s a class of drugs called trip­tans, there’s sev­en of them they’re all much of a much­ness, dif­fer­ent patients suit dif­fer­ent ones, and you need to take them when you have the headache, and you take that once at the start. If it works well, fan­tas­tic. If the migraine creeps back after it’s worked you can take a sec­ond dose but you should not repeat the dose if the first dose hasn’t worked well.

The dif­fi­cul­ty with acute treat­ment of migraine is the more you take a short term treat­ment, the more the migraine bounces back. So if you find that you’re hav­ing to take a short-term treat­ment to abort migraine twice a week or more, you should rethink your strat­e­gy and go for a preventative.

Always a good idea to keep a record, keep a diary of the migraines before you go on to pre­ven­ta­tive treat­ment and if you look on the Migraine Clin­ic web­site you will find lots of diaries you can down­load. But you can do it on an Excel spread sheet, or a piece of paper, but keep a diary or you won’t know if it’s changed, but it’s a medi­um-term strat­e­gy for at least three months, pos­si­bly a year. But you wouldn’t pack in pre­ven­ta­tive treat­ment before three months or you haven’t giv­en it a chance.

There are many dif­fer­ent drugs to try. You can try some nutraceu­ti­cals from the health food store, you can take drugs from the phar­ma­cist, many of them and often they can work very well indeed. So where we’re going in the future is to treat the head, and the big inter­est in putting injec­tions in and around the head – Botox, occip­i­tal nerve blocks, nerve-stim­u­lat­ing devices, pos­si­bly even mag­net­ic or elec­tri­cal stim­u­lat­ing devices – very exper­i­men­tal, but there’s an awful lot hap­pen­ing and we hope very much to have migraine a more treat­able dis­ease in the future than it is now.

Evans: Giles Elring­ton, Med­ical Direc­tor of the Nation­al Migraine Cen­tre. He men­tioned the word ‘nutraceu­ti­cal’ – well that’s just two words put into one, from ’nutri­tion’ and ’phar­ma­ceu­ti­cal’, in oth­er words, food prod­ucts that report­ed­ly pro­vide health and med­ical benefits.

And now’s a good time for me to remind you that whilst we believe that infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judge­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. He or she is the only per­son who knows you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf.

Now, Emma Williams is a patient at the Nation­al Migraine Cen­tre. She had her first migraine at around the age of 13:

Emma Williams: I thought I was, like, dying of a brain tumour and nobody real­ly under­stood. My moth­er didn’t real­ly, she thought I was mak­ing it up, because my broth­er and sis­ter don’t have them, they’d nev­er seen any­thing like it, so it took her a while to actu­al­ly take me to the GP. She thought I was using it as an excuse to kind of get out of things and that’s when I would go and lie down and be knocked out for hours because I’d have a hor­ri­ble headache, and the visu­al impair­ment aura just real­ly ter­ri­fied me.

Evans: Can you just explain to me what the dis­or­der is?

Wil­iams: For me, I kind of, some­times I draw them so I remem­ber, or if I think there’s some­thing spe­cif­ic to remem­ber. It’s kind of like your vision is… if you think of it as a clock face, it’s like zig-zag­gy lines, it’s almost like you’ve got water in your eye or some­thing, or if you’re a lady, if you’ve worn, like, spark­ly mas­cara, and then you’ve got a bit stuck on the inside of your eye, or if you’ve ever stood on the stage and had real­ly bright light and it catch­es the edge of your con­tact lens­es or some­thing like that. It’s like that, it’s like you’re like, ’Oh is some­thing…?’ It can be real­ly beau­ti­ful actu­al­ly, rain­bow colours, for me, and it’s zigzag lines from the cen­tre of, as it were, a clock face, and then it trav­els around clockwise.

So it sort of goes – some­times it goes from light – and it can be left-hand side or right-hand side, so the doc­tor want­ed to know exact­ly which, sort of, hemi­spheres it’s com­ing from. Is it left, is it right, does it move between the eyes? And then it can feel more, like, watery, like a sort of aque­ous solution’s in your eye, and you can kind of, I don’t know, I feel slight pres­sure in my eye, not any pain. And then it moves around and then it fades away.

Giles Elring­ton: Aura is a very inter­est­ing part of migraine. And I think it’s aura that allows us first to realise that migraine is a dis­or­der of the brain. But not every­one with migraine gets aura. The pub­lic often think that you have to have flash­ing lights, for exam­ple, for it to be a migraine and this is incor­rect. Depend­ing on how you divide your patients up, among peo­ple who have migraine, only about one in three, one in ten have aura.

You can get real­ly bogged down in the argu­ment whether migraine with aura and migraine with­out aura are the same or dif­fer­ent dis­eases. It’s the same dis­ease, I think, it’s just a ques­tion of how much bolt-on stuff there is. The odd thing is that we find changes on func­tion­al brain scans that are iden­ti­cal to what hap­pen in aura, in peo­ple who don’t have aura. I think it’s all the same ill­ness but I accept a range of opin­ion on that.

Now, migraine changes over time and one of the few advan­tages of get­ting old­er is you tend to get less headache with migraines. So migraine, migraine headache, all forms of migraine are less com­mon in old­er than in younger peo­ple. Many peo­ple who start off hav­ing migraine with a visu­al aura, which is the com­mon­est aura we recog­nise, will, over time retain the aura and lose the headache.

Williams: It’s like I can’t real­ly see out of one eye prop­er­ly, so I get that, and then if I lie down then I’ll get a headache, and a real­ly bad one. But I learnt when I was about 21 that if I don’t lie down, I don’t get the headache, so I have an odd, medi­um half-migraine kind of thing. But they can hap­pen real­ly sud­den­ly, and they can knock me out for about an hour of visu­al dis­tur­bance and then I feel a bit, sort of, grog­gy afterwards.

You do just want to go and lie down, because it just makes you feel real­ly tired. But I’m learn­ing that – espe­cial­ly recent­ly, I’m sort of play­ing music when I get the visu­al dis­tur­bances if I can, and I learn to go into just a snooze, but not lie down. I prop myself up with bean­bags, and I play very del­i­cate music, sort of, real­ly test­ing it, and I drift off, and I don’t get the headache, and then I wake up feel­ing quite refreshed in a way. I just think if I try and bat­tle them, with the visu­al impair­ment I’ve nev­er actu­al­ly walked into a wall or any­thing but my sight is deplet­ed, so might as well still down and deal with it, rather than get annoyed, as I maybe used to. And I think that’s more pos­i­tive, because it’s almost like time out, it’s good, it’s like decom­press. Why not, it’s hap­pen­ing so might as well make the most of it. And I get cre­ative ideas as well when they hap­pen so that’s good.

Evans: So you actu­al­ly use the migraines for pos­i­tive purposes?

Williams: I’m start­ing to now, yeah, I think. That doesn’t mean I want lots of them, but if your brain is doing some­thing that’s phys­i­cal­ly mak­ing you feel so tired, but that can still be inter­pret­ed as a peace­ful time, yeah.

Bucholz: My name is Keri Bucholz. I am a wife and a moth­er of two daugh­ters, and a stay-at-home mum. I suf­fer from hem­i­cra­nia-con­tin­ua and migraine with or with­out aura.

Evans: Tell me some­thing more about the hemicrania-continua.

Bucholz: I just recent­ly found out about hem­i­cra­nia-con­tin­ua this year, com­ing to the clin­ic. My doc­tors back in the States have nev­er even heard of it. I thought it was migraine on my left side, under my cheeks and sinus area and behind the eye. It would get big­ger and more painful and then it would just go away, where it would just be a lit­tle bit of pain behind there, no big deal. It was just a con­stant pain behind the eye. The hem­i­cra­nia-con­tin­ua is under con­trol now, I get migraines at least twice every cou­ple of weeks.

Evans: And how long do they last?

Bucholz: They can last about two to three days. The worst of it is only about a day.

Evans: So, what we’re talk­ing about, you get one of these once a week that lasts for three days.

Bucholz: Yes.

Evans: Well I don’t have to be a bril­liant math­e­mati­cian but it leaves four days per week where you feel well.

Bucholz: Yes, yes.

Evans: Now, how do you bring up two chil­dren and run a home, with only four days out of seven?

Bucholz: It has a big effect on the fam­i­ly. The unpre­dictabil­i­ty, I think, has been the hard­est for my girls. Whether they have an activ­i­ty and Mom’s plan­ning on tak­ing them, or Mom’s plan­ning on being there, and then Mom can’t be there, that’s pret­ty tough on them. I think that’s the hard­est part.

Evans: How do they cope with that?

Bucholz: I think the most impor­tant thing is talk­ing so they’re not afraid when they see that Mom’s not feel­ing well. And then when I am feel­ing well, we enjoy going over…watching a video of what they’ve accom­plished that I’ve missed, or things like that.

Evans: So, they absorb it into their lives and keep you up to date with what’s been going on these three days a week when you haven’t been able to cope.

Bucholz: Yes.

Evans: Explain to me how you got them to do that and what they do and what they tell you.

Bucholz: It start­ed out chrono­log­i­cal­ly keep­ing track of what they were doing at what age. There’s a pro­gramme called Hall­marks Mile Box. It’s easy for any age to turn in videos and things and turn it into a lit­tle pro­gramme that not only they can enjoy for­ev­er, but you can enjoy.

Evans: But it embraces the whole fam­i­ly, it’s the chil­dren being involved in your illness

Bucholz: Yes.

Evans: And con­tribut­ing to the man­age­ment of your illness.

Bucholz: Yes, I think there’s less ten­sion, and less fear, and less wor­ry when you can be in con­trol of a lit­tle of some­thing in life. And espe­cial­ly chil­dren need to be able to have that in their lives, to say, ’OK, maybe this isn’t nor­mal for every­one but at least I know I can do this.’

Evans: Keri Bucholz.

Now, you’ll remem­ber that Giles Elring­ton made a dis­tinc­tion between pri­ma­ry and sec­ondary headaches. He used a com­put­ing anal­o­gy to describe pri­ma­ry headaches as a mal­func­tion of the brain’s soft­ware and sec­ondary as prob­lems with the hardware.

Elring­ton: Let’s say that you have pain due to a toothache, so the tooth is doing some­thing bad, that sends a mes­sage in the trigem­i­nal nerve into the brain stem – the stalk of the cau­li­flower which is the brain, the trigem­i­nal nucle­us. The nerve relays there and pass­es on a slight­ly dif­fer­ent mes­sage up a path­way in the brain stem and that goes to the thal­a­mus which is, com­ing back to the cau­li­flower – it’s where you cut of the flo­rets off the stalk – and then it goes on from thal­a­mus up to the cor­tex, which is the white bit of the cau­li­flower and of the brain. What’s hap­pen­ing in migraine is it cuts out the first part, so there is no bad mes­sage com­ing in the trigem­i­nal nerve, but there is a spon­ta­neous gen­er­a­tion of pain in the trigem­i­nal nucleus.

Now, around that area there’s oth­er stuff hap­pen­ing and as well as the gen­er­a­tion of pain, there is the recruit­ment of mes­sages to the stom­ach that make the stom­ach say, ’Let’s emp­ty upwards rather than down­wards today.’ It’s called vom­it­ing, or nau­sea, so that’s recruit­ed as well. Also you turn up the gain on mes­sages from the ears and from the eyes, and from the bal­ance mech­a­nism, so move­ment makes you feel gid­dy and sick, vision is painful, lights hurt, nois­es hurt. It works on smell as well, so smell becomes unpleas­ant, the smell of cook­ing makes you want to vom­it and the smell of chem­i­cals makes the pain worse. So you can mod­el migraine as an ampli­fi­ca­tion dis­ease, but also as the spon­ta­neous gen­er­a­tion of abnor­mal messages.

Now, that also projects up to the cor­tex of the brain, which is the most com­plex part, the bit that makes us dif­fer­ent from all oth­er ani­mals. And there is a sup­pres­sion of cor­ti­cal activ­i­ty which moves across the cor­tex in a wave, like a tsuna­mi com­ing across, and that’s what gives you your visu­al aura, some­times paral­y­sis, speech dif­fi­cul­ty, mem­o­ry dif­fi­cul­ty, stuff like that. So it’s in per­il with­in the ner­vous sys­tem, but it is an impor­tant mat­ter, this is where we’re at with under­stand­ing migraine. Is it a dis­or­der of the mood, of the psy­che? No. Is it a dis­or­der of the neck? No. Is it a dis­or­der of the sinus­es, of aller­gy, of the heart, of the blood ves­sels? No, it’s a dis­or­der of the brain. I’m a neu­rol­o­gist, am I biased? Possibly.

Evans: Giles Elring­ton, Med­ical Direc­tor of the Nation­al Migraine Cen­tre, which is a char­i­ty to treat peo­ple with headache, but also to car­ry out research and to pro­vide edu­ca­tion to health care pro­fes­sion­als. It used to be known as the City of Lon­don Migraine Clin­ic. The name changed to empha­sise its nation­al sta­tus. So how does one get referred to the Nation­al Migraine Cen­tre? Heather Sim is its chief executive.

Heather Sim: The major­i­ty of peo­ple actu­al­ly self-refer. Some of them who come through as ’self-referred’, in invert­ed com­mas, are actu­al­ly referred by the GP but the GP shows them our web­site and tells them about us and then they ring up them­selves which saves the GP writ­ing a let­ter. All the patients that come and see us have a full report writ­ten that’s sent to the GP and a copy giv­en to the patient. And the GPs like the ser­vice because they get a lot of infor­ma­tion back and some of them have report­ed that they’ve learnt a lot about man­ag­ing headache from the reports we send back with the patients.

Evans: How much does a refer­ral cost?

Sim: We’re a char­i­ty, so we don’t actu­al­ly charge patients as such. We do have pri­vate patients and there is a pri­vate patient fee which at the moment is £250 for a first appoint­ment and £175 for a fol­low-on. We also, if peo­ple have pri­vate health insur­ance, they can be seen through their pri­vate health insur­ance. But they have to ring up and get the agree­ment from the pri­vate health insur­ance first and they pay the mon­ey to us and then they reclaim it.

The major­i­ty of patients are seen through the char­i­ta­ble route which, because we near­ly closed two years ago through lack of funds, we share with the patients when they book that the cost to deliv­er the ser­vice to them is in the region of £208 for the first appoint­ment and £104 for the fol­low-on. We say, if you can cov­er the core costs, that’s fan­tas­tic, how­ev­er, if not we have a sug­gest­ed min­i­mum dona­tion of £100 each time peo­ple come. But if peo­ple are on low income or unem­ployed, that they can just come along and give what they can and remem­ber us when they get a job.

Elring­ton: If I have a crit­i­cism of my col­leagues, I think there’s an over-con­cern about sec­ondary headache. So there’s a great ten­den­cy when you go to a neu­rol­o­gist with headache to acknowl­edge this and say ‘take this very seri­ous­ly’. And you do a brain scan and the patient’s fright­ful­ly pleased it’s being tak­en seri­ous­ly at last. And so off they go and have their scan and they come back, ‘What does the scan show, doc­tor?’ ‘I’m very pleased to say the scan’s nor­mal’. And the patient’s so relieved, they’re out of the room before they think of the prop­er ques­tion: ’OK, so what are you going to do about the headache?’

So where we are, in this clin­ic par­tic­u­lar­ly, is in symp­tom con­trol. And I think it’s very impor­tant to say to the patient, ’What’s your main symp­tom?’ Some­times peo­ple say, under­stand­ably, ‘I just want to feel well’, and then you have to dig into that and say, ’Well, of all the symp­toms you have, which is the one, if I could make that go away, it would have the biggest impact on your life?’

And often it’s not just the pain – often it’s the fear of attacks, and many of the patients with migraine – which is in most peo­ple an episod­ic dis­or­der, the minor­i­ty is chron­ic and per­sis­tent but most­ly it’s episod­ic – a lot of my patients have sim­ply stopped agree­ing to do things in their life because they’re fed up of hav­ing to can­cel and they live a very shel­tered and rather bor­ing life. So the fear of attacks is very important.

I have a big prob­lem with patients who are so devot­ed to their work that they will bang on tak­ing short-term treat­ments that will actu­al­ly make things worse in the long-term because they can’t bear to take the time off work. For heaven’s sake, take some time off, get it sort­ed, then go back to work when you’re better.

Evans: Giles Elring­ton, Med­ical Direc­tor of the Nation­al Migraine Cen­tre. And their web address for fur­ther infor­ma­tion is NationalMigraineCentre.org.uk, that’s NationalMi­graine­Cen­tre – no gaps – NationalMigraineCentre.org.uk.

Now before we end this edi­tion of Air­ing Pain don’t for­get that if you’d like to put a ques­tion to Pain Concern’s pan­el of experts or make a com­ment about these pro­grammes, then please do via our blog, mes­sage board, email, Face­book, Twit­ter or even pen and paper. All the con­tact details are at our web­site which is painconcern.org.uk and from there you can also down­load this and all pre­vi­ous edi­tions of Air­ing Pain. I’ll end this edi­tion with Keri Bucholz and Emma Williams.

Williams: Just because you have migraine, don’t think it can con­trol your life because it can real­ly feel like it does, and I know mine are mild but even for me I would notice such a dif­fer­ence in self-esteem. If you feel that some­one has heard you and under­stood, and just chat­ting to oth­er peo­ple that have had it, and they don’t think that when you’re hav­ing aura you’re, sort of, drunk or… because some­times it can come across as that, or you’re being real­ly odd or qui­et, because I go very qui­et when I have one. Many just sit and suf­fer in silence. Don’t do that, please come and find more infor­ma­tion, it’s real­ly important.

Evans: What advice would you give peo­ple like you, young moth­ers who have migraines, try­ing to bring up fam­i­lies, try­ing to keep a home together?

Bucholz: Go easy on your­self. I mean, be gen­tle with your­self, don’t get over­ly frus­trat­ed with the things you can’t do. Enjoy the things that you can do. And it takes times to fig­ure out what’s going on when you have any pain dis­or­der, it takes a lot of time so don’t get dis­cour­aged, and enjoy those rela­tion­ships with your fam­i­ly, and com­mu­ni­cate and talk to oth­ers about it, because you’ll find that you’re not the only one out there that has migraines and also you’ll find it’ll help ease a lot of things in your family.


Con­trib­u­tors:

  • Dr Giles Elring­ton, Med­ical Direc­tor, Nation­al Migraine Cen­tre, London
  • Heather Sim, Chief Exec­u­tive of The Nation­al Migraine Centre
  • Patients includ­ing: Keri Bucholz, Emma Williams and Chris Whitehouse.

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