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Transcript – Programme 33: Gender and communication

How gen­der can influ­ence expe­ri­ences of pain, and liv­ing with clus­ter headaches

To lis­ten to this pro­gramme, please click here.

We hear about oro­fa­cial pain (pain of the face and mouth) from Dr Bar­ry Sessle, a pro­fes­sor in the Fac­ul­ty of Den­tistry at the Uni­ver­si­ty of Toron­to in Cana­da. Dr Sessle also explains why some types of chron­ic pain are more com­mon in women than men. Con­tin­u­ing with this top­ic, clin­i­cal psy­chol­o­gist Dr Aman­da Williams talks about pelvic pain and the dif­fi­cul­ties men in par­tic­u­lar have in com­ing for­ward to seek treatment.

Issues cov­ered in this pro­gramme include: Gen­der, pain per­cep­tion, migraines, clus­ter headaches, pelvic pain, oro­fa­cial pain, sex dif­fer­ences, women’s pain, men’s pain, uro­gen­i­tal pain, soci­ety, com­mu­ni­cat­ing pain, breast can­cer, prostate can­cer, brain sig­nals, throb­bing pain, burn­ing pain, nerve block­er and relationships.

The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain des­ig­nat­ed 2012 as the Glob­al Year Against Headache. We speak with a hus­band and wife on how they man­age as a cou­ple to live with hus­band Phil’s debil­i­tat­ing clus­ter headaches.

Paul Evans: Hel­lo, I’m Paul Evans and wel­come to Air­ing Pain – the 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 has been enabled by an edu­ca­tion­al grant from Pfiz­er Limited.

Phil O’Brian: Before I was diag­nosed the pain is so bad that you auto­mat­i­cal­ly think that you’ve got some­thing in your head, a growth in your head or what­ev­er, and every­thing flash­es through your mind. Noth­ing can hurt that much, it can­not be nor­mal that you can have that much pain and you’re going to live.

Sue O’Brian: Phil would pace up and down and be out in the gar­den at 3, 4 in the morn­ing, and he’d be real­ly irri­ta­ble so I would sort of stay away from him. I didn’t know whether to help him or to stay back.

Evans: The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain des­ig­nat­ed 2012 as Glob­al Year Against Headache; headaches being among the most fre­quent of med­ical com­plaints seen in Gen­er­al Prac­tice. And they take on many forms: from ten­sion type headaches, migraine, to rar­er con­di­tions such as trigem­i­nal neu­ral­gia, all of which we’ve fea­tured on Air­ing Pain.

Lat­er in the pro­gramme I’ll be talk­ing to a hus­band and wife, and how they man­age as a cou­ple to live with hus­band Phil’s debil­i­tat­ing clus­ter headaches. But I want to start with Doc­tor Bar­ry Sessle. He’s a pro­fes­sor in the Fac­ul­ty of Den­tistry at the Uni­ver­si­ty of Toron­to in Cana­da and he spe­cialis­es in oro­fa­cial pain. That is pain of the face and mouth.

Dr Bar­ry Sessle: Some of the most com­mon pain con­di­tions in the body, whether they’re acute or chron­ic, occur in this region. And par­tic­u­lar­ly for the chron­ic pain con­di­tions in the oro­fa­cial region, the face, the jaws, the mouth, like many chron­ic pains else­where in the body, we don’t know very much about their eti­ol­o­gy, what their cause is, and how they progress. And so that makes diag­no­sis and espe­cial­ly man­age­ment prob­lem­at­ic, when you don’t know exact­ly what are the under­ly­ing mech­a­nisms. And so I’ve spent the last 40–45 years try­ing to work out these mech­a­nisms, par­tic­u­lar­ly using ani­mal mod­els of acute and chron­ic oro­fa­cial pain.

Evans: What are the oth­er prob­lems with facial pain?

Sessle: One of the most com­mon – oth­er than toothache, which is prob­a­bly one of the most com­mon pains in the body – there’s also headaches of course, dif­fer­ent types of headaches, and some of them can actu­al­ly get expressed, or be spread to or referred to, parts of the mouth or parts of the jaw. And also anoth­er very com­mon con­di­tion is called tem­poro­mandibu­lar dis­or­ders, where there’s pain in and around the jaw joints or in the asso­ci­at­ed mus­cles. And basi­cal­ly 5–10% of the pop­u­la­tion have tem­poro­mandibu­lar dis­or­ders and there’s a female pre­dom­i­nance. There’s in fact a female pre­dom­i­nance in most chron­ic pain con­di­tions, not all, but most. And so clear­ly gen­der plays a fac­tor in a num­ber of these chron­ic pain con­di­tions in the oro­fa­cial area, as well as else­where in the body.

Evans: Do you know why that is?

Sessle: There’re genet­ic fac­tors involved in the man­i­fes­ta­tion of the pain, and part of that is relat­ed to sex dif­fer­ences. Some of our own research has shown that, first­ly in ani­mal mod­els, the respon­sive­ness of the nerve fibres sup­ply­ing parts of the face and mouth and jaws and the jaw joint, there’s a sex dif­fer­ence in how they respond. So in ani­mals for exam­ple, you give a chem­i­cal agent to acti­vate these nerve end­ings in the joint or mus­cle, the jaw mus­cle, and with this par­tic­u­lar chem­i­cal acti­va­tion the female rats, for exam­ple, those affer­ent fibres, sen­so­ry fibres in female rats were much more respon­sive that those in male rats. And like­wise if you inject this chem­i­cal into awake humans, into their jaw mus­cle for exam­ple, again young women are much more sen­si­tive, give much high­er pain rat­ings, much more spread of the pain that they indi­cat­ed, com­pared with young men.

This is impor­tant because it means that there’s phys­i­o­log­i­cal­ly based sex dif­fer­ences in these periph­er­al pain mech­a­nisms. Not even talk­ing about the brain and pos­si­ble dif­fer­ences in how males and females may dif­fer in their neu­ro­chem­istry and neu­ro­cir­cuit­ry relat­ed to pain with­in their brain, but even in just the sen­so­ry nerve fibres out­side the brain, there’s these phys­i­o­log­i­cal­ly based sex differences.

Evans: Put sim­ply, does that mean that women hurt more?

Sessle: Yes, there’s actu­al­ly been doc­u­ment­ed in women, humans – and again I’m gen­er­al­is­ing, it can vary from one coun­try to anoth­er or from dif­fer­ent racial and cul­tur­al groups – that females, for exam­ple, have low­er pain thresh­olds, they have greater pain sen­si­tiv­i­ty at thresh­old, but they also have low­er pain tol­er­ance, they can tol­er­ate pain.

There are these tests one can car­ry out in a con­trolled envi­ron­ment to mea­sure pain thresh­old or pain tol­er­ance or rat­ings of pain between those two extremes and it’s very clear that in a num­ber of these racial, cul­tur­al groups that there are these sex dif­fer­ences. And of course one of the ques­tions as well, is that psy­cho­log­i­cal­ly based, is it phys­i­o­log­i­cal­ly based and is it cen­tral­ly based ­– in oth­er words is it with­in the brain that’s caus­ing this, or is relat­ed to this sex dif­fer­ence? Or is it the nerve fibres themselves?

As I said, we have estab­lished that it seems that at least the periph­er­al nerve fibres, there’s some dif­fer­ences in how they respond to some painful stim­uli. Doesn’t mean that’s how they respond to all painful stim­uli, it just hap­pens to be the ones that we were test­ing. But also you have to take into account that of course there’d be dif­fer­ences with­in the brain. There are dif­fer­ences between males and females in the neur­al cir­cuits in the brain and the neu­ro­chem­i­cals that are used in those circuits.

Evans: So, tak­ing that back to facial pain then, den­tists and clin­i­cians should be aware that men and women are feel­ing dif­fer­ent pain?

Sessle: That they could be, yes, they could be, yeah. It’s impor­tant to estab­lish that there are these phys­i­o­log­i­cal­ly-based dif­fer­ences because many times in the past, and maybe still hap­pen­ing in some iso­lat­ed cas­es, that women com­plain­ing of oro­fa­cial pain, or pain else­where in the body, had been sort of sloughed off by the clin­i­cian, and say­ing, ‘this is just a female thing, it’s being, they’re just exag­ger­at­ing, being, you know, too emo­tion­al about it’ and so on. And they’ve attrib­uted it to that and real­ly haven’t man­aged the pain prop­er­ly, just slough­ing if off as a female thing that’ll even­tu­al­ly work out. But there are these phys­i­o­log­i­cal­ly based dif­fer­ences, well estab­lished, both in the periph­er­al ner­vous sys­tem and in the cen­tral ner­vous sys­tem, sex differences.

Evans: Doc­tor Bar­ry Sessle, from the fac­ul­ty of Den­tistry at the Uni­ver­si­ty of Toron­to in Canada.

And we’ll stay with gen­der dif­fer­ences for the moment because one area where men and women most def­i­nite­ly dif­fer is of course the pelvic region. Phys­i­cal dif­fer­ences aside, men and women have dif­fer­ent atti­tudes towards pelvic pain and many men put this in the cat­e­go­ry of ‘women’s prob­lems.’ And the ret­i­cence to dis­cuss their own pelvic pain can, and does, put their lives at risk. Doc­tor Aman­da Williams is an aca­d­e­m­ic and clin­i­cal psy­chol­o­gist and she works main­ly at Uni­ver­si­ty Col­lege London.

Dr Aman­da Williams: It’s a par­tic­u­lar­ly dif­fi­cult pain for peo­ple to talk about, to dis­close to those around them. So par­tic­u­lar­ly men, we’ve found, tend to make up a cov­er sto­ry which then isn’t very con­sis­tent, because that’s not where they feel pain and they don’t behave in a way that shows they have pain in what­ev­er they said… their knees. It is a dif­fi­cult prob­lem to dis­close, peo­ple may laugh rather than sym­pa­thise, as they might over anoth­er pain.

Peo­ple wor­ry about some­thing being wrong, with all vis­cer­al pains, sort of pains inside the body cav­i­ty, they can be quite dif­fuse, they may be quite sharp, but they may be quite dif­fuse and hard to locate. Many peo­ple aren’t quite sure what’s inside them and of course they start to wor­ry about things like can­cer or tis­sues torn or dam­aged in some way, some­thing hor­ri­ble going on, and find it hard to get the infor­ma­tion that’ll reas­sure them.

Evans: Well, you’ve just con­firmed what hap­pened before we switched this recorder on. I had a lit­tle gig­gle about uro­gen­i­tal pain, because I assumed that’s women’s problems.

Williams: That’s very inter­est­ing isn’t it? Because you’re absolute­ly right, lots of the web­sites which say ‘chron­ic pelvic pain’ only refer to women. Even sci­en­tif­ic papers which are titled ‘Chron­ic Pelvic Pain’ only refer to women. But men can also get pelvic pain, some­times for the same rea­sons, to do with mus­cu­lar pelvic floor. And then of course men and women do have dif­fer­ent organs and they’ll have dif­fer­ent patholo­gies and prob­lems that affect those organs. But it is seen as a woman’s prob­lem and I think that, again, makes it hard for men to talk about it.

Evans: So what prob­lems do men get?

Williams: They may be very specif­i­cal­ly locat­ed in the gen­i­tals, they may be much more gen­er­al­ly in the pelvic cav­i­ty, they may affect their bow­els – it often hap­pens with irri­ta­ble bow­el syn­drome. Men may have prob­lems in par­tic­u­lar activ­i­ties or posi­tions, so very keen cyclists are a bit over rep­re­sent­ed. And cer­tain­ly in the cycling lit­er­a­ture there’s a lot of dis­cus­sion about how to make sad­dles more com­fort­able and padded cloth­ing to help. So it’s clear­ly a prob­lem that then just goes over the top in some peo­ple. So real­ly a great vari­ety of things, which again makes it hard for men to find infor­ma­tion eas­i­ly, that they feel refers to them.

Evans: Why do you think men have a prob­lem in dis­cussing this?

Williams: They find it hard­er any­way to talk about emo­tion­al­ly laden issues, things that wor­ry them. They tend to look more for infor­ma­tion and hard facts, per­haps, rather than reas­sur­ance as well. Women might go for both. We know that in all sorts of health areas peo­ple talk to friends, fam­i­ly mem­bers, many times before they reach a doc­tor, unless it’s some­thing very urgent. Women do that far more than men and they’ll get a range of opin­ions among which may be, ‘oh yes, I know some­body who had that’ or ‘I had that and, yes, I went to my doc­tor and I was giv­en this.’

So you start to get an idea of the pos­si­bil­i­ties if you talk about it to oth­er peo­ple. If you have some­thing fair­ly rare and you don’t talk about it, you’re nev­er going to get any of that reas­sur­ance that it might be treat­able, that a doc­tor will under­stand and take it seri­ous­ly and so on. And of course some of the men we’ve seen have said that they’ve felt the female doc­tor wasn’t ter­ri­bly sym­pa­thet­ic, although oth­ers have found them fine.

Evans: One thing that peo­ple have told me is very effec­tive is when a, say, high pro­file sports star comes out. I mean it’s hap­pened recent­ly that John Hart­son had tes­tic­u­lar can­cer. And he was very, very open about just leav­ing it to go and go and go and he’s sur­vived it. But it could have been very dif­fer­ent. Now I actu­al­ly know peo­ple who’ve been wor­ry­ing about the same thing for years and just one trip to the doc­tor, just one 10 minute appoint­ment, makes them sleep at night again.

Williams: Exact­ly, or else get direct­ed to fur­ther inves­ti­ga­tion treat­ment. Now I think it’s real­ly admirable when peo­ple do do that. I don’t know about that par­tic­u­lar sports­man but I do know that with Kylie Minogue talked about her breast can­cer, it’s lead to a real­ly sig­nif­i­cant increase in young women going to doc­tors either with wor­ries about breast lumps or going to mas­tec­tomies or just tak­ing it more seri­ous­ly and not see­ing it as some­thing that only affects oth­er people.

Evans: So men must not be bashful.

Williams: A doc­tor­al clin­i­cal psy­chol­o­gy trainee of mine did two very nice bits of research: one was lit­er­a­ture review but the lit­er­a­ture was what was avail­able on web­sites. So she used typ­i­cal web-surf­ing behav­iour to look at what would be avail­able to men who looked up uro­gen­i­tal pain, chron­ic pelvic pain on the web. And actu­al­ly, of course, many sites were for women only.

But when she found the sites she looked first­ly at whether they gave good infor­ma­tion on the caus­es of pain, which can be help­ful infor­ma­tion for men and often reas­sur­ing and the sec­ond was whether they gave any ref­er­ence to psy­chol­o­gy, psy­cho­log­i­cal con­se­quences, dif­fi­cul­ties, dis­tress and so on. And she found it was real­ly quite hard to obtain both those bits of infor­ma­tion. Only three web­sites that she found had good psy­cho­log­i­cal infor­ma­tion, quite a lot more had infor­ma­tion about cause but some of it was seri­ous­ly out of date or misleading.

The sec­ond bit of work she did was talk­ing to men about what they thought was wrong with them before and after their first con­sul­ta­tion at the pain clin­ic when they were com­ing for uro­gen­i­tal pain. And men were very keen to have a mechan­i­cal expla­na­tion that made sense to them, for which of course some need­ed some extra back­ground infor­ma­tion about how the mechan­ics works anyway.

We were expect­ing more can­cer fears and we actu­al­ly saw rather few. What was nice to see was that when men felt they’d been inves­ti­gat­ed for can­cer often at an ear­ly stage via the GP and it was ruled out and it stayed ruled out, they didn’t come back to that wor­ry lat­er. And that’s very good to see because in some groups you see peo­ple keep on com­ing back to the can­cer wor­ry, you know, six months after the scan was done they think, well, per­haps it’s devel­oped recent­ly. So that was good to see.

But they were often very bewil­dered about the pos­si­ble cause. And because pain is a prob­lem with­in the ner­vous sys­tem about it func­tion­ing dif­fer­ent­ly, it doesn’t fit very well into a mechan­i­cal expla­na­tion and you can devel­op analo­gies about com­put­ers or phones and so on but none of them is real­ly con­vinc­ing. So it’s quite hard to get a con­vinc­ing expla­na­tion of pain in the uro­gen­i­tal area for men and I know quite a lot of the doc­tors use a lot of dia­grams to con­vey that. But again, with sta­t­ic dia­grams you can’t show how mes­sages instead of going along the nerves occa­sion­al­ly are fir­ing off all the time and then the brain of course expe­ri­ences pain.

Evans: When I was wor­ried about tes­tic­u­lar can­cer, not seri­ous­ly wor­ried about it but I had a pain in my tes­ti­cles, some­thing you don’t real­ly talk about, I didn’t make an appoint­ment with my female GP, I made an appoint­ment with a male GP and he felt my tes­ti­cles and then he said, ‘I’m just going to stick my fin­ger up your bot­tom.’ Had I known that was going to hap­pen [Williams: …you wouldn’t have gone…], I would not have gone – but I’m very grate­ful that I did go and every­thing was ruled out.

Williams: Exact­ly, and as you say, then you can sleep at night.

Evans: I know. But I wouldn’t have gone if I’d found a web­site that said your doc­tor was going to do some­thing like that…

Williams: Yes, that’s a very good point because it does put peo­ple off, although one can with that infor­ma­tion say, ‘this is per­fect­ly nor­mal, the doc­tor does this many times for inves­ti­ga­tions and is com­plete­ly unboth­ered by it.’ So you just have to think of your­self as, for instance, anoth­er per­son in a long row of peo­ple hav­ing that inves­ti­ga­tion. But I agree, it does put peo­ple off. And what came out of this research project was very often that men haven’t found any­thing that made a huge dif­fer­ence to their pain but what they had done was resolve those wor­ries enough. They felt that real­ly hor­ri­ble things had been ruled out; they knew they weren’t going to steadi­ly get worse and that was enough for them to feel, ‘Okay, now I know where I stand, I can start to think about what I need to do dif­fer­ent­ly’, and so on.

And there’s some good evi­dence for phys­io­ther­a­py help­ing some of those pains, where­as before they wouldn’t have con­sid­ered phys­io­ther­a­py, now it makes sense to them to try that and so on. So it was kind of open­ing some good doors and clos­ing some bad ones that she had heard over and over again from men who had had their con­sul­ta­tion and felt bet­ter for it.

Evans: Well, I can con­firm that it’s exact­ly as you say it is. [Laughs]

Williams: That’s great to hear!

Evans: Clin­i­cal psy­chol­o­gist, Dr Aman­da Williams. Now at this point I’ll just say our usu­al words of cau­tion, that whilst we believe the 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 there­for the appro­pri­ate action to take on your behalf.

As you heard ear­li­er in the pro­gramme, 2012 is the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain’s Glob­al Year Against Headache. Now clus­ter headaches are excru­ci­at­ing. They’re more painful than migraines or any oth­er type of headache. In fact they’re so severe that they’re often described as ‘sui­ci­dal headaches’.

Phil O’Brien: My name’s Phil O’Brien and I suf­fer from clus­ter headaches.

Sue O’Brien: I’m Sue O’Brien, I’m mar­ried to Phil and I also suf­fer when he suf­fers with clus­ter headaches. [Laughs]

P O’Brien: True, true.

Sue O’Brien: I do.

P O’Brien: I’ve had them for six years and it took us two years to find out what it was, which appar­ent­ly is quite quick. Most peo­ple don’t find out, they’re not diag­nosed with clus­ters for four, five, six years. And I’ve just been told there have been peo­ple who haven’t been told, not known, what they’ve been suf­fer­ing from for 10 years plus. So we found out quite quick, really.

Evans: Just tell me what a clus­ter headache is.

P O’Brien: A clus­ter headache’s not like a migraine; you’ve got a nerve in your head and basi­cal­ly it sends out too big a sig­nal. So most people’s nerve is send­ing out lit­tle sig­nals, mak­ing things work in your head and mak­ing things hap­pen, and mine sends out – when I’m hav­ing a clus­ter headache – there’s some­thing in the brain stem, isn’t there? [S O’Brien: Uh, huh…] becomes active and my nerve sends out mas­sive sig­nals. So I get pain in the ear, in the eye, in the teeth and in one side of the head, it’s only ever one side. So mine’s on the left side. So when I first got ’em and we didn’t know how to treat them I could be in absolute agony. I liken it to some­one parked a lor­ry on your head, the pain, and that could go on for 4 or 5 hours.

S O’Brien: Where­as obvi­ous­ly in a migraine peo­ple like the qui­et and you get sort of get agi­tat­ed, and you pace up and down a lot, don’t you. So the symp­toms are total­ly dif­fer­ent to a migraine.

P O’Brien: So we read arti­cles where they say it’s a migraine times 10 on the pain fac­tor but I don’t know because I’ve nev­er had a migraine.

Evans: Some­body called it a sui­cide headache?

S O’Brien: Yes.

P O’Brien: Yeah, we was just talk­ing to the spe­cial­ist just now and he’s known of peo­ple com­mit­ting sui­cide whilst hav­ing a headache. It is a severe pain. You can’t describe to some­one what it’s like…

S O’Brien: You say it’s like a clamp, don’t you? …and it just keeps tight­en­ing, and tight­en­ing until you can’t take it anymore.

P O’Brien: It’s as if someone’s putting your head in a vice and they’re tight­en­ing the vice until you real­ly can’t take any more pain and then they give it anoth­er half a turn. And they won’t release it and you could have that for two hours. It’s not a throb­bing, it’s con­stant pain. You just can’t describe it.

S O’Brien: So in the begin­ning we didn’t know what it was did we?

P O’Brien: I used to head-butt the wall, didn’t I? And bash myself in the head. And so I can quite believe that peo­ple could give up on it, if you like, you know, give up on it.

S O’Brien: You used to hit your­self didn’t you? Saved me doing it I sup­pose! [Laugh­ter] You did get quite agi­tat­ed. But we’ve learnt now the best thing for Phil is I would leave him alone and let him deal with it. I’m always in the back­ground, and if he wants any­thing he’ll tell me.

P O’Brien: When I get a clus­ter now…

S O’Brien: We’ve got a rou­tine haven’t we?

P O’Brien: Yeah, because it’s been diag­nosed and we’ve got var­i­ous treat­ments, so we can take an injec­tion which gets rid of it quite quick­ly. If it’s not too bad a headache then I can take some painkillers and then we have to wait for it to go but the side – mine’s is on the left side of the head – and I’m burn­ing up… so Sue knows that we’ve got two flan­nels and she gets real­ly cold water and she keeps swap­ping the flan­nels for me and she knows that I like…

S O’Brien: …they come off actu­al­ly real­ly hot, so he’s actu­al­ly burn­ing up and we change the flan­nels, like, every 30 seconds….just con­stant­ly chang­ing them.

P O’Brien: And then Sue knows that I like to have a cup of tea, so in the ear­ly days I used to get agi­tat­ed. I used to say, ‘get this, get that, leave me alone.’ And that’s not in my nature nor­mal­ly. But when I was in the mid­dle of a clus­ter headache, I become bossy… [S O’Brien: Irri­ta­ble…] and some­times I just need­ed her to go away and leave me alone.

S O’Brien: But now we don’t real­ly talk to each oth­er much. So I just get on with what I’m doing, we’ve got a lit­tle rou­tine going…

P O’Brien: Yeah, we’ve got a love­ly sys­tem going where we deal with it togeth­er, don’t we?

S O’Brien: And there was a stage when I used to wake up before Phil would have a clus­ter, because I knew he was going to get one. So I’d wake him up and he’d wake up and say, ‘Yeah, I’ve got a headache com­ing.’ But I was aware that he’d be scratch­ing his head in his sleep. So I’d wake him up and say to him, ‘you gonna get a headache?’ [P O’Brien: And I did.] And he did.

Evans: How did you know then?

S O’Brien: We found out that in the begin­ning, Phil’s headaches were just at night-time; they were one hour after we went to bed, regard­less of what time we went to bed. We used to set the alarm for 45 min­utes after we’d been to bed to try and wake up before, but my sub­con­scious always used to wake me up when he start­ed sort of fid­get­ing in bed so I wouldn’t par­tic­u­lar­ly sleep quite deep. And some­times it might go past the hour and I’d wake up and think, ‘oh he hasn’t had a headache yet.’ I’d get back to sleep and then he’d wake up with one so…

P O’Brien: There’s a weird thing where, as Sue just said, if we went to bed at 11 o’clock at night, the headache was exact­ly 12 o’clock. If we went to bed at 10 to 1 in the morn­ing the headache was at 10 to 2. And it’s almost like your brain has become this… [S O’Brien: ‘You could set your clock by it.’] You’d lay down and you go to sleep and you’d become into a relaxed state and once your brain, say, after an hour’s sleep, your brain must switch off or what­ev­er or do what­ev­er it does. And my brain thought, ‘ahh, now’s a good time’ and it used to fire off these sig­nals which would cre­ate this headache.

We could deal with that. When it was every night, or every oth­er night and it was just at night, we could deal with that because we used to get out of the bed, get rid of the headache and go back to bed. That wasn’t a prob­lem. For the last two years they’ve start­ed com­ing dur­ing the day. So now you’re dri­ving along, all of a sud­den you’re aware you’re gonna get a headache, you’ve got to pull up wher­ev­er you are, you can’t dri­ve, you can’t con­cen­trate, you can’t real­ly talk to any­one. So now, it’s sort of affect­ing our lives quite badly.

S O’Brien: Yes because the oth­er week he was on three or four a day; so every time we get him doing some­thing we’d have to stop.

P O’Brien: So hence we’re now back at the migraine and head clin­ic and they’re now look­ing at oth­er meth­ods because the treat­ment I was on, it basi­cal­ly isn’t work­ing any more. It used to work but my headaches have actu­al­ly got worse and worse. So we’re now in the throes of hav­ing oth­er treat­ments, aren’t we?

Evans: So what treat­ment is that?

P O’Brien: Well I used to be on large amounts of Ver­a­pamil which is like a blood pres­sure, a heart pill, I believe, and it also helps with clus­ter headaches. So we’re now going on to a treat­ment which is quite spe­cialised in that it’s small dos­es of Lithi­um, which fright­ened the life out of me because it was used to treat depres­sion and things like that.

How­ev­er, we’ve been told by our spe­cial­ist that, you know, Lithi­um does all sorts of things for dif­fer­ent peo­ple, so I had the impres­sion it was going to play with my mind and things like that because it’s linked to depres­sion and it’s noth­ing like that at all. It basi­cal­ly helps how active the brain is at cer­tain times so for peo­ple with clus­ter headaches a lit­tle bit of Lithi­um can do some good but then I have to go and have blood tests and things like that; it’s a treat­ment that has to be close­ly mon­i­tored. And then because I’ve had clus­ter headaches for so long, to give these oth­er treat­ments an oppor­tu­ni­ty to work, we need to try and switch them off for four or five weeks because my body’s got in the habit of hav­ing a headache. So we’re try­ing to switch them off for 4 or 5 weeks.

Evans: Switch off the medication.

P O’Brien: Switch off the pain, switch off the clus­ter headache.

S O’Brien: So today…

P O’Brien: So today I’ve had an injec­tion in the back of the head…

S O’Brien: …a nerve blocker…

P O’Brien: …which is a nerve block­er. So I’ve had that today and now we’ve got to wait and see what effect that has. So we’re hop­ing that this nerve block­er injection…

S O’Brien: …changes the sig­nals in his head…

P O’Brien: …is going to calm every­thing down rather than change them, I believe, it’s gonna calm it all down. So hope­ful­ly I’m going to get five or six or even eight weeks off from hav­ing a clus­ter headache, which will hope­ful­ly give the new treat­ment an oppor­tu­ni­ty to get a hold and work.

Evans: You were say­ing that it’s become unman­age­able over the last cou­ple of months. How does that impact on you?

P O’Brien: Well I’ve got a busi­ness, so I’m bet­ter off than some, I sup­pose, in terms of I’m my own time man­ag­er. So it’s good in that respect. But the biggest dif­fer­ence for me is that when I used to just get them at night, nobody knew I had them. We didn’t tell any­one because it wasn’t impor­tant. It was just some­thing between us at home who knew that I…

S O’Brien: You don’t like the fuss, do you? You don’t want peo­ple com­ing up to you…

P O’Brien: No, I don’t want peo­ple feel­ing sor­ry for me and ask­ing me if I’m alright, I just want to…I’ll get clus­ter headaches but I just want to get on with me life. I still just wan­na be me; I don’t want every­body ask­ing me how I’m get­ting on.

S O’Brien: But peo­ple who are aware of it are con­stant­ly going, ‘Oh, are you alright?’

P O’Brien: Because I don’t think of it that I’m ill – because I’m not ill, I just suf­fer from clus­ter headaches. Now in fact, if somebody’s ill, then you want… maybe they want sym­pa­thy, and peo­ple keep going, ‘oh, how do you feel now’ and peo­ple like that. And it’s reas­sur­ing; it’s almost a pat on the back. But suf­fer­ing from clus­ter headaches – I can only speak for myself – I don’t want people’s sym­pa­thy. I don’t want to talk about it. Because it’s not an ill­ness that’s going to kill me or any­thing, it’s just an unpleas­ant thing that hap­pens to me. So I like the idea of peo­ple not know­ing, real­ly. It’s bet­ter because they don’t keep ask­ing questions.

S O’Brien: You’ve got a quick treat­ment now as well. You have an injec­tion, so when he gets a headache he injects him­self and the headache’s gone, nor­mal­ly with­in 10 min­utes, which is real­ly good. So we just car­ry med­ica­tion around with us wher­ev­er we go, don’t we? If ever we go out you’ve got some and I’ve got some. And then if Phil does get a real­ly bad headache he’ll just go off and inject him­self and with­in 10 min­utes it’s gone.

P O’Brien: Yeah, so this new treat­ment is good. I’m say­ing new treat­ment – this is a treat­ment that was offered to me three or four years ago, and I didn’t like the idea of inject­ing myself, because – this sounds weird – what hap­pens is, I was told that I could have these injec­tions and they gave me some. And I went home pleased as punch, ‘I’ve got these new injec­tions, I can’t wait for my next headache to see how good it is.’ And it becomes a lit­tle bit like that, y’know, you almost want try it out. And I got a headache which made me flus­tered and agi­tat­ed, so then I didn’t want to inject myself. I took the lid off and I’m, ‘oh I can’t, I can’t do that’ and so that went across the room because I’m agi­tat­ed, [laughs] big hand­fuls of painkillers and it went on. So I had these injec­tions that I didn’t want to take… [S O’Brien: They’re bril­liant.] So, and now even­tu­al­ly I’ve seen some­one here and they said, ‘You’ve real­ly got to try these things. You’ve got to… you’ve got to cope with it, you’ve just got to have this injec­tion.’ And now I have the injec­tions and they’re bril­liant, aren’t they? They’re a lifesaver.

Evans: Phil and Sue O’Brien who I met at the Nation­al Migraine Cen­tre in Lon­don. We’ll come back to them to end this edi­tion of Air­ing Pain in a moment. But let me just remind you that if you’d like to put a ques­tion to Pain Concern’s pan­el of experts or just make a com­ment about these pro­grammes, then please do so via our blog, mes­sage-board, e‑mail, Face­book, Twit­ter and of course pen and paper. All the con­tact details are at our web­site, which is Pain Con­cern, one word, painconcern.org.uk. And you can down­load all the edi­tions of Air­ing Pain from there too.

P O’Brien: We deal with it as a pair, as a cou­ple, really.

S O’Brien: In the begin­ning I felt real­ly use­less because we didn’t know what it was, and Phil would pace up and down and be out in the gar­den at three, four in the morn­ing and he’d be real­ly irri­ta­ble. So I’d sort of stay away from him. I didn’t know whether to help him or to stay back. But now we’ve just got an under­stand­ing. I do what I do and you do what you do and if any­thing changes he’ll let me know if he wants any­thing else.

P O’Brien: The way I’ve been told today that after a peri­od of time it can just go away. And I await that day. [Laughs]

S O’Brien: Def­i­nite­ly.

P O’Brien: Real­ly.


Con­trib­u­tors:

  • Pro­fes­sor Bar­ry Sessle, Fac­ul­ty of Den­tistry, Uni­ver­si­ty of Toronto
  • Dr Aman­da Williams, Read­er in Clin­i­cal Health Psy­chol­o­gy, Uni­ver­si­ty Col­lege London
  • Phil and Sue O’Brien.

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