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Transcript — Airing Pain 129: Shingles & PHN (Post Herpetic Neuralgia)

Deter­min­ing what Shin­gles real­ly is and why vac­cine uptake is so low?

To lis­ten to the pro­gramme please click here.

 This edi­tion of  Air­ing Pain has beenfund­ed by a grant from The RS Mac­don­ald Char­i­ta­ble Trust and The Stafford Trust. 

What exact­ly is Shin­gles? We often hear it thrown into con­ver­sa­tion along­side a virus many of us have already had: Chick­en­pox. So how are the two linked? Why is one more asso­ci­at­ed with young peo­ple and the oth­er with old­er peo­ple? The answer is they are both infec­tions caused by the vari­cel­la-zoster virus. The vast major­i­ty of us had the Chick­en­pox virus when we were chil­dren, with many par­ents even inten­tion­al­ly expos­ing their chil­dren to the virus. Shin­gles, on the oth­er hand, occurs after some­one has already had Chick­en­pox when the virus (which remains in the body) is reac­ti­vat­ed. 

One of the main wor­ries peo­ple have about hav­ing Shin­gles is the poten­tial to devel­op Post Her­pet­ic Neu­ral­gia (PHN). This is defined as per­sis­tent pain 3 months after the ini­tial rash devel­oped. Unfor­tu­nate­ly PHN is a chron­ic con­di­tion which caus­es burn­ing neu­ro­path­ic pain. This con­di­tion is caused by the dam­age the virus inflict­ed dur­ing its reac­ti­va­tion. 

Paul Evans speaks to health pro­fes­sion­als and some­body with lived expe­ri­ence of Shin­gles & PHN in order to illu­mi­nate the intri­ca­cies of the vari­cel­la-zoster virus, how it works and how it affects us through­out our lives. 

Issues cov­ered in this pro­gramme include: Shin­gles, Chick­en­pox, vari­cel­la-zoster virus, neu­ro­path­ic pain, Post Her­pet­ic Neu­ral­gia, pain man­age­ment, virus reac­ti­va­tion, insom­nia, vac­ci­na­tion, vac­cine uptake, side effects, amitripty­line, Gabapenti­noids and depres­sion. 

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Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain, and for those who care for us. I’m Paul Evans, and this edi­tion of Air­ing Pain is fund­ed by the Plum Trust. 

Dr. Richard John­son: 30% of us will get Shin­gles dur­ing our life­time. But if we live to eighty, it’s 50%. So your chance of get­ting Shin­gles is actu­al­ly pret­ty high. 

Jan Fish­er: 24/7, for eight years, I nev­er have a minute that I don’t have pain. It’s been there for so long, they know now it’s not going to clear up because it’s real­ly dam­aged all the nerve endings. 

John­son: Now not every­body is going to get post her­pet­ic neu­ral­gia. But the chance of get­ting Shin­gles is high. And you can’t choose whether you get post her­pet­ic neu­ral­gia or a not. So real­ly, the only choice you can make is to pre­vent get­ting Shingles. 

Evans: Chick­en­pox, one of those child­hood ill­ness­es most of us had, whether we knew it or not, caus­es few prob­lems in child­hood. But it‑, or the her­pes vari­cel­la zoster virus that caus­es it‑, can come back to bite us for want of a bet­ter word, as a much more seri­ous ill­ness in lat­er life as Shin­gles. And the trou­ble does­n’t nec­es­sar­i­ly end there. Because nerve dam­age caused by hav­ing Shin­gles can lead to inter­mit­tent or con­tin­u­ous nerve pain, the con­di­tion called post her­pet­ic neu­ral­gia. But, and here’s the good news, a vac­cine intro­duced in 2013 will help avoid get­ting the infec­tion in the first place. The bad news is that the take-up by those eli­gi­ble for the vaccine‑, that’s peo­ple in their seventies‑, is poor. Dr. Michael Ser­pell, is a con­sul­tant in anaes­the­sia and pain med­i­cine at Queen Eliz­a­beth Hos­pi­tal in Glas­gow, and for the past twen­ty-five years has worked with­in its mul­ti­dis­ci­pline pain team. 

Ser­pell: Shin­gles is a reac­ti­va­tion of a virus, which you’ve already been infect­ed by, in the form of chick­en­pox. Usu­al­ly, as a young­ster. That virus remains dor­mant with­in your body, usu­al­ly with­in the nerve tis­sue. And at some point, it can be reac­ti­vat­ed gen­er­al­ly when you’re old­er. And it caus­es a rash and pain in a cer­tain part of your body. And this usu­al­ly caus­es a par­tic­u­lar rash with lit­tle vesi­cles that can be painful in itself for sev­er­al weeks. 

Evans: Let me take you back a lit­tle bit. In fact, in my case, take me back about six­ty-four years, I had chick­en­pox. And cer­tain­ly with my par­ents, my chil­dren and my grand­chil­dren, it was con­sid­ered to be a good thing for your child to have chick­en­pox. So per­haps it’s not such a good thing. 

Ser­pell: Get­ting chick­en­pox is bet­ter when you’re younger, because you do recov­er much quick­er, and with less com­pli­ca­tions than you do as an adult. Once you get over the age of twen­ty, there are quite uncom­mon, but very seri­ous com­pli­ca­tions like menin­gi­tis, steril­i­ty, you know, which can real­ly, you know, be quite sig­nif­i­cant for the adult. But chil­dren seem to breeze through chick­en­pox ill­ness over a mat­ter of a week or so. 

Evans: My par­ents were obvi­ous­ly… and we were obvi­ous­ly right to get our chil­dren and me to have chick­en­pox. But then you say the virus stays dor­mant and can come out as Shin­gles. So why is that? 

Ser­pell: It’s only reac­ti­vat­ed, in most cas­es, when the immune sys­tem you have starts to sub­side. That often hap­pens as you get elder­ly, that’s just the gen­er­al process of get­ting elder­ly a lot of your organ sys­tems and immune sys­tem in par­tic­u­lar do get less active and so the virus can emerge. It can also emerge if you are run­down, you know, a very severe ill­ness from anoth­er cause, which runs your body down. Or if you’re giv­en drugs like steroids, which can sup­press your immu­ni­ty. These are oppor­tu­ni­ties for the virus to sud­den­ly become reactive. 

Evans: Now I have two expe­ri­ences of Shin­gles in my fam­i­ly, one with my daugh­ter in law, who was in her thir­ties and did­n’t even know she’d had Shin­gles, and my grand­moth­er in her mid-eight­ies, who real­ly did know she had Shin­gles, it looked as if her face had been burned in a fire. So the sever­i­ty might come with age. 

Ser­pell: It’s much less com­mon in the younger peo­ple. So with age, the inci­dence of hav­ing a flare up of Shin­gles increas­es. And we also know that gen­er­al­ly speak­ing, it tends to be more severe dur­ing the actu­al flare up but also there is a high­er inci­dence of devel­op­ing this chron­ic pain con­di­tion called post her­pet­ic neu­ral­gia, the old­er you are com­pared to a younger per­son. So the exam­ple you gave me there, it shows you, you know, the rash was not obvi­ous in your daugh­ter law, she’s younger. It’s less com­mon, but it’s not unknown for peo­ple just to have an itch or a fun­ny feel­ing and have no rash. But they have had Shin­gles if you do the tests to prove it. Your old­er rel­a­tive had a much more pro­nounced reac­tion, the skin rash that’s typ­i­cal of old­er peo­ple, demon­strat­ing more sen­si­tiv­i­ty to a flare up. 

Evans: How long should Shin­gles last? 

Ser­pell: The skin flare up, the vesi­cles usu­al­ly sub­side after a few weeks, you can be left with painful, sen­si­tive skin for sev­er­al more weeks after that, but it should gen­er­al­ly heal by a month to six weeks. But the real wor­ry is devel­op­ing what we call post her­pet­ic neuralgia. 

Evans: That’s Dr. Michael Ser­pell, con­sul­tant in anaes­the­sia and pain med­i­cine at Queen Eliz­a­beth Hos­pi­tal in Glas­gow. So what is post her­pet­ic neu­ral­gia? As a con­sul­tant anaes­thetist, Dr. Robert John­son ran the pain clin­ic at the Bris­tol Roy­al Infir­mary with a par­tic­u­lar inter­est in post her­pet­ic neu­ral­gia. Since retir­ing from clin­i­cal work, he con­tin­ues with research, writ­ing and teaching. 

John­son: We’ve had to cre­ate a def­i­n­i­tion for post her­pet­ic neu­ral­gia, because in the past peo­ple have called any pain that fol­lows Shingles‑, even a week after Shingles‑, post her­pet­ic neu­ral­gia. But in fact, almost invari­ably, that’s going to get bet­ter. And post her­pet­ic neu­ral­gia is now pain three months or more after devel­op­ing the rash of Shin­gles, so all the results of stud­ies that you might read are based on that def­i­n­i­tion of post her­pet­ic neuralgia. 

Evans: And that’s a stan­dard def­i­n­i­tion for chron­ic pain, pain that remains three months after the ini­tial injury should have healed. 

John­son: That’s right. But with Shin­gles, the Shin­gles virus will have ceased to be active a long time before three months after devel­op­ing the rash. And in fact, much of the virus will have migrat­ed back along the nerves from the skin back to the spinal cord where it had been ever since hav­ing chick­en­pox usu­al­ly as a child. 

Evans: So just explain the process… chick­en­pox is a virus. 

John­son: Yes. The vari­cel­la zoster virus 

Evans: And that sticks around? 

John­son: Yes, from the rash that we have with chick­en­pox, which is, you know, can be pret­ty wide­spread. It migrates lit­er­al­ly [with­in nerves] that car­ry sen­sa­tion, back to some spe­cialised nerve tis­sue around the spinal cord, and indeed, around cer­tain parts of the brain as well. And it just stays there. You’re unaware of it, it’s not doing any harm. As it hap­pens, we know that it does reac­ti­vate inter­mit­tent­ly dur­ing life not caus­ing any symp­toms, but it does cause an immune response, which is very valu­able because that delays the chance of get­ting Shingles. 

Evans: So we might not even know that it’s been reactivated? 

John­son: Absolute­ly not. No. 

Evans: So what hap­pens to make it reac­ti­vate into Shingles? 

John­son: Oh there’s a big ques­tion. Sim­ply put, we grow old­er, the part of our immune sys­tem that deals with this par­tic­u­lar virus [gets] weak­er as we get old­er, and we get to a point where we get below a crit­i­cal lev­el of immu­ni­ty, and the virus is able to reac­ti­vate, it takes advan­tage of the sit­u­a­tion and then it spreads along the nerves that car­ry sen­sa­tion to the skin and you’ve got Shingles. 

Evans: So if I get this right, one of the down­sides of us liv­ing longer, which we think is a good thing, and then the advances of med­i­cine have helped us to live longer, but the down­side is our immune sys­tem is going and we may well catch it. 

John­son: I’m going to quib­ble with the [term], ‘Catch it’, but yes… (laughs) 

Evans: Reactivated. 

John­son: Reac­ti­vat­ed. Exactly. 

Evans: So once it’s reac­ti­vat­ed, what happens? 

John­son: It repli­cates, so it divides, with­in cells so there’s more and more virus as the acute Shin­gles con­tin­ues, and it spreads along with­in nerves that car­ry sen­sa­tion to the skin [into some­thing that] we call [a] der­matome. Almost invari­ably, it only reac­ti­vates in one lit­tle seg­ment of the body on one side of the body. It can be any­where from the top of the head to your big toe, but it’s usu­al­ly only in one area. Dur­ing the reac­ti­va­tion dur­ing the immune response, which there will be to the virus hav­ing reac­ti­vat­ed, there is dam­age done to the tis­sues where the virus is. And that means to parts of the sen­so­ry nerves and even some­times part of the spinal cord itself. And that is what leads to the long term pain. It’s not the virus still remain­ing active, it’s the dam­age that was done dur­ing the actu­al attack‑, if you like‑, of Shingles, 

Evans: Hence, the term post herpetic. 

John­son: Exact­ly. That’s right. 

Evans: The virus has wrecked some part of the ner­vous system. 

John­son: Yes. And it isn’t always the same nerve fibres, in every patient, every per­son who gets Shin­gles, some peo­ple have total numb­ness in the area. Some peo­ple have extreme sen­si­tiv­i­ty in the area such that a breeze or touch­ing [of] the clothes is painful, we call that allo­dy­nia. So it can dif­fer a lot and the nature of the pain dif­fers. You can get con­stant pain, which could be an aching or a burn­ing pain. You can get tin­gling. You can get shoot­ing pains, sud­den elec­tric shock-like pains. Some peo­ple get all of them. Some peo­ple just get one. It varies a lot from indi­vid­ual to individual. 

Evans: Dr. Robert John­son. Jan Fish­er has had post her­pet­ic neu­ral­gia since hav­ing Shin­gles eight years ago. 

Fish­er: I’ve had it in the left front quar­ter of my head, so from my left eye, through to that cor­ner of the head. 

Evans: How did it feel when it started? 

Fish­er: I just felt like a rag­ing headache at the top of my head and I noticed two tiny lit­tle red spots on the brow right into the hair­line itself. But the pain was excru­ci­at­ing. And we were aware with our friends, we were in Sal­is­bury. And it hap­pened when we were just walk­ing around Sal­is­bury just before we left. And we had to dri­ve all the way back and I was just in mor­tal agony from Sal­is­bury to Norwich. 

Evans: And what steps did you take? 

Fish­er: Well, I some­how knew‑, I don’t know why‑, but some­thing… I think it was these red spots, I some­how knew that it was Shin­gles. Then after that, it just got worse and worse and worse to the extent that my eye com­plete­ly closed over. And it was just all cov­ered in scabs‑, for want of a bet­ter word‑, asso­ci­at­ed with her­pes. So I just could­n’t open my eye. I could­n’t get out of bed, I lost a stone in weight. For the first two weeks, I was prac­ti­cal­ly bedrid­den, could­n’t walk at all I was just so ill. 

Evans: How long did that last? 

Fish­er: It took four weeks before my eye opened. But I got out of bed on a reg­u­lar basis. I think after two and a half weeks, then we were due to go on hol­i­day because we’re keen sailors and we rent­ed boats, our friends and us out in Greece. So I thought, ‘Right it’s on the mend now, I’ll go’, and of course it was­n’t like that at all. I was still ill while I was out there. [I was] not very well when I got back but slow­ly I felt bet­ter in myself because I nev­er ever got rid of the pain in the head and the rash cleared up. I had the eye looked at the hos­pi­tal just to make sure there was no per­ma­nent dam­age done to the eye. But I was lucky it was just on the eye­lid and round about the eye rather than the eye itself. 

Evans: The out­ward signs‑, the scabs as you call them‑, did they go? 

Fish­er: Yes, they did. But because it was in my hair, it was very, very dif­fi­cult to treat it. For­tu­nate­ly, the old style calamine lotion was still avail­able. I mean, it was the only thing that soothed my head and face, so I just had it caked on sort of day and night around the eye and all the way in the head and the hair. So it was­n’t very nice, but at least it stopped the itch­ing because it itch­es. I mean that’s what I’m left with today as well. It’s not just pain, which is more like a… Now it’s a light tin­gling effect until about six o’clock and then it ramps up. But I break out with a rash every so often and I have at the moment. So last night I nev­er slept because [of] this rash all over my head like an eczema. But of course [the pain] being in my head… The nat­ur­al reac­tion when you’ve got pain is to cud­dle your­self or [hold] a hot water bot­tle. But when it’s on your head‑, it’s like hav­ing an ear­ache or toothache‑, you can’t com­fort it in any way. 

Evans: Jan Fish­er, the Shin­gles Sup­port Soci­ety has been run­ning since 1987. with the aim of giv­ing advice to peo­ple who have Shin­gles and to raise aware­ness of the Shin­gles vac­cine. More on that lat­er. Here’s the soci­ety’s Mar­i­an Nicholson: 

Mar­i­an Nichol­son: Any­one who sus­pects they’ve got Shin­gles needs to see a doc­tor right away. And there­fore aware­ness of what Shin­gles is, is very impor­tant. We’ve got leaflets that we send out to GP surg­eries, just so that peo­ple who are vague­ly inter­est­ed and have vague­ly heard of Shin­gles can pick it up and learn more about how to iden­ti­fy the begin­ning of a Shin­gles out­break. It’s that weird sen­sa­tion in a small area of [the] body. And I can’t be more spe­cif­ic, because for some peo­ple, it’s a burn­ing [sen­sa­tion on the] skin, like an area of scald­ed skin. And for oth­er peo­ple, it’s a needling sen­sa­tion, as though some­one were hit­ting your skin with one of those wire brush­es they use on rust. So it could be absolute­ly any­thing. But a small weird sen­sa­tion, and then that’s fol­lowed by spots that appear in that same region. Lit­tle blis­tery things like chick­en­pox spots. 

Evans: You’re in charge of the Shin­gles Sup­port Soci­ety. What do peo­ple want to know from you? 

Nichol­son: They read up on three dif­fer­ent top­ics real­ly about Shin­gles. One of them is the infec­tiv­i­ty. So peo­ple are wor­ried, that, now they’ve got Shin­gles, are they allowed to mix with the pub­lic? And the answer is yes. Because only some­body who’s nev­er had chick­en­pox could catch any­thing from you. And there aren’t many of those around. And any­way, they would have to actu­al­ly rub against the area of Shin­gles. And as so often Shin­gles is on the ribs or is under cloth­ing, peo­ple are not going to come in con­tact with it. If it’s on the face, obvi­ous­ly, keep your face away from oth­er peo­ple. But most peo­ple have had chick­en­pox and, there­fore, most peo­ple are nev­er going to be able to catch any­thing from you. The oth­er top­ic is treat­ment. And then the final top­ic now is that peo­ple are ring­ing up to find out if it’s okay for them to get the Shin­gles jab. 

Evans: Mar­i­an Nichol­son of the Shin­gles Sup­port Soci­ety. So that’s the infec­tiv­i­ty of Shin­gles dealt with. We’ll deal with the vac­cine lat­er. But treat­ment, Dr. Robert Johnson: 

John­son: There are drug treat­ments and there are non-drug treat­ments. The most com­mon drug treat­ments these days would be amitripty­line, which is a drug which was orig­i­nal­ly intro­duced and used as an anti­de­pres­sant, but in much high­er dos­es. And it hap­pens that in low dos­es, it has an effect on parts of the trans­mis­sion of impuls­es with­in nerves, pain impuls­es in this case, which can be very ben­e­fi­cial. So in nerve pain, it can be very help­ful. And the oth­er main class of drugs that are giv­en a drugs called the gabapenti­noids: gabapentin and pre­ga­balin. They don’t give ben­e­fit to every­body. Some peo­ple get side effects which are worse than the ben­e­fit. But they are help­ful in many cas­es, there’s no doubt about that. 

Evans: Is that a long term treatment? 

John­son: It can be. My prac­tice was to use drugs until one had got con­trol. Con­tin­ue for at least anoth­er month, and then just grad­u­al­ly reduce the dose to see what hap­pened. Some­times you had to go back to the orig­i­nal dose. Some­times you could actu­al­ly stop the drug. But the answer is to test it and see. 

Evans: What hap­pens when those drugs aren’t effective? 

John­son: We’ve got prob­lems. There are some top­i­cal treat­ments, one can apply local anaes­thet­ic usu­al­ly in spe­cial very expen­sive patch­es, which are help­ful to some peo­ple. There are sub­stances… there’s one called cap­saicin, which is actu­al­ly derived from hot chilli pep­pers. And that can be applied as an oint­ment, which is a messy busi­ness because it’s three times a day, and it stings for about twen­ty min­utes or more each time it’s applied. [It] can give help to some peo­ple, there’s no doubt about that. There are again, skin patch­es, we’re using cap­saicin, which is a much high­er con­cen­tra­tion, which are applied maybe every twelve weeks or so. In some peo­ple, there is ben­e­fit but it’s not huge­ly suc­cess­ful. And there are all sorts of oth­er things which are real­ly unproven. [Such as] bot­u­linum tox­in, Botox, is used in some cen­tres. There’s been some suc­cess with it, but I think not enor­mous. The truth is [that] prob­a­bly less than 50% of peo­ple get real­ly sat­is­fac­to­ry effects from treat­ment of post her­pet­ic neu­ral­gia. Now, one thing to remem­ber though, which is impor­tant. Post neu­ral­gia starts at three months. It does­n’t nec­es­sar­i­ly go on for­ev­er. It only goes on for as much as twelve months in about four in 100 peo­ple, some­thing like that. Most peo­ple are still going to get a reduc­tion over time, after it has developed. 

Evans: Dr. Robert John­son. Jan Fish­er again: 

Fish­er: I was on med­ica­tion for a num­ber of years. I’ve been down to the spe­cial­ist neu­rol­o­gy research cen­tre in Lon­don. And I had three infu­sions of lido­caine. And each infu­sion last­ed, I think it was two or three hours, and he just had no effect what­so­ev­er. So I’ve had that, I’ve had all the pills, I’ve been on var­i­ous anti­de­pres­sants, because that’s known to sort of treat ner­vous com­plaints. But in the mean­time, had all of the side effects that you would get with tak­ing these pills long term. So I decid­ed, well, I’ve got pain with the med­ica­tion, I don’t like tak­ing the med­ica­tion. So I just stopped tak­ing it all. And basi­cal­ly, that’s where we are now. I’m no worse off for not tak­ing it. And I was no bet­ter off for tak­ing it. So there’s days when it’s real­ly, real­ly bad. And I just cry, more out of frus­tra­tion than any­thing. And then, you know, it’ll go away. And I just think, ‘Okay, fine, it’s gone. Get on with it with your life.’ I know I’ve got for the rest of my life. All the experts have told me this. It might go away. It might not. But chances are, it won’t. 

Evans: Jan Fish­er, Dr. Michael Ser­pell, con­sul­tant in anaes­the­sia, and pain med­i­cine, with a mul­ti­dis­ci­pline pain team at Queen Eliz­a­beth Hos­pi­tal in Glasgow: 

Ser­pell: A lot of peo­ple do come expect­ing the pain, you know, to be com­plete­ly tak­en away with drugs or oth­er treat­ments that we might do, injec­tions, for exam­ple. But the real­i­ty is often, it’s only helped a lit­tle bit, if at all, and maybe only one in five to one in ten get a worth­while improve­ment in the pain. So the major­i­ty of peo­ple are going to have to accept their degree of pain and learn to cope with it, learn to live with it, and get as use­ful a life as pos­si­ble. That’s quite a dif­fi­cult thing for a patient to under­stand and [accept], but that’s what edu­ca­tion and talk­ing helps to impart. 

Evans: Now I know that in pain clin­ics like your pain clin­ic, I’m sure, it’s not just drug man­age­ment, pain is a bio psy­cho social busi­ness. How do you teach peo­ple to self-man­age it, and how effec­tive is it? 

Ser­pell: There are spe­cif­ic tech­niques that we can train the patient in, once they accept that they’re going to have to come to terms and cope with the degree of pain. So there are spe­cif­ic tech­niques like mind­ful­ness, cog­ni­tive behav­iour­al ther­a­py that we use, that will help peo­ple accept the degree of pain they’re in, they can dis­so­ci­ate them­selves some­what from it. And they can sort of let the pain wash over them rather than become tense and fear­ful of the pain, which then ampli­fies the unpleas­ant expe­ri­ence of the pain. 

Evans: You use term, ‘Learn to live with it’, that does­n’t mean, ‘Well, that’s it, get on with it’, there are approach­es to self-man­age­ment that real­ly can help peo­ple with chron­ic pain. 

Ser­pell: Absolute­ly, yes. ‘Learn to live with it’, is not just a pas­sive throw­away state­ment say­ing, ‘We’re going to dis­charge you, learn to live with it’, it is actu­al­ly try­ing to empow­er patients with train­ing and give them the tools to cope not just with the inten­si­ty of the pain that they will experience‑, dur­ing the day­time, there will be flare ups‑, you can give them tech­niques to sort of get through that phase of the day. But also oth­er aspects like improv­ing their sleep, you know, get­ting a good night’s sleep can make such a dif­fer­ence to how you feel and what your pain lev­els are expe­ri­enced like, so improv­ing your sleep, improv­ing your mood… We know that if you’re depressed or anx­ious, that ampli­fies the pain response as well. So it’s try­ing to deal with these periph­er­al things which the pain makes worse, but they also make the pain worse. 

Evans: Is it the cir­cle of pain? [As in] you have the pain, you get depressed about it, you stop exer­cis­ing, you stop eat­ing prop­er­ly, and that feeds into the pain and makes it worse. And then it goes round and round again, every­thing feed­ing into each oth­er. And you have to break that cir­cle, I guess. 

Ser­pell: Yeah, absolute­ly. It’s a vicious cir­cle and it’s a self-per­pet­u­at­ing one. So try­ing to break the dele­te­ri­ous effects of the pain can help actu­al­ly reduce the pain itself. So hav­ing bet­ter under­stand­ing and edu­ca­tion, not being so anx­ious, see­ing some hope, see­ing some pos­i­tiv­i­ty, and, there­fore, [belay­ing] depres­sion. All these things will make the expe­ri­ence of pain, bad as it is less bad than it would oth­er­wise have been. So it allows some escape and by assert­ing or demon­strat­ing to your­self that you have some con­trol over the 

degree of pain that you suf­fer, that gives you con­fi­dence to actu­al­ly start to move in a pos­i­tive way and know that you can con­trol to a degree, the amount of pain and, there­fore, get on with your life and func­tion as best as pos­si­ble despite the pain still being there, but you hope­ful­ly are able to push it into the background. 

Evans: And pain man­age­ment pro­grammes help you to break that circle. 

Ser­pell: Absolute­ly. [A] pain man­age­ment pro­gramme is a very intense struc­tured pro­gramme done as a group, usu­al­ly a dozen or so patients at a time, go through a pro­longed course, it’s usu­al­ly a full day for twelve weeks in a row. So it’s a very intense pro­gramme as a group, with a lot of phys­io­ther­a­py and psy­chol­o­gy train­ing along the way. We bring in CBT, cog­ni­tive behav­iour­al ther­a­py, mind­ful­ness tech­niques. And we train peo­ple up to under­stand that and start using the sim­ple tools in order for peo­ple to come out [at] the end with empow­er­ment to be able to con­trol the pain as best as they can. 

John­son: There is only one answer to post her­pet­ic neu­ral­gia, and that’s don’t get it. And the only way we have of not get­ting it is by vaccination. 

Evans: So Dr. Robert John­son has brought us to the third of those con­cerns we men­tioned ear­li­er, expressed [by] the Shin­gles Sup­port Soci­ety, vac­cines. Now, the vac­cine was rolled out in the UK in 2013. And I must con­fess that I, like many of us, found guide­lines of who was eli­gi­ble to have it and why we should have it rather con­fus­ing. Mar­i­an Nichol­son of the Shin­gles Sup­port Society: 

Nichol­son: When it was first intro­duced, because there was­n’t a great deal of sup­ply, and because they did­n’t want to over­whelm GPs, they brought it in on a catch up scheme, where peo­ple who were sev­en­ty and sev­en­ty-nine, were eli­gi­ble for the drug. And then the next year, it was peo­ple who were sev­en­ty, sev­en­ty-one and sev­en­ty-nine. Slow­ly each year, they’ve been adding anoth­er year. And now final­ly, they’ve met in the mid­dle. So now, the Shin­gles vac­cine is avail­able to any­one from their sev­en­ti­eth birth­day through to the last day of their sev­en­ty-ninth year. And we are encour­ag­ing peo­ple to get that vac­cine, because it pre­vents half the cas­es of Shin­gles. And in the oth­er half where peo­ple do actu­al­ly devel­op Shin­gles, it lessens the chances of this post her­pet­ic neu­ral­gia that we’ve been talk­ing about. 

Evans: Mar­i­an Nichol­son of the Shin­gles Sup­port Soci­ety. So whilst the ini­tial take-up of the vac­cine in 2013 may have been sat­is­fac­to­ry, the sub­se­quent take-up has been poor. Robert Johnson: 

John­son: I think it’s because of the lack of knowl­edge of us, as a pop­u­la­tion, about the dis­ease and the poten­tial prob­lems. There have been one or two inter­na­tion­al stud­ies of look­ing at knowl­edge of Shin­gles. And they all show that it’s only peo­ple who’ve had a close rel­a­tive, or a close friend who has devel­oped Shin­gles and post her­pet­ic neu­ral­gia who real­ly know any­thing much about it. Oth­er­wise, it’s thought of as a slight­ly painful rash that peo­ple some­times get. And of course, ‘Some­times get’, is an inter­est­ing point, because by the time we get to eighty, eleven in every 1000, every year of the pop­u­la­tion will get Shin­gles. And to put that into an eas­i­er con­cept, per­haps, 30% of us will get Shin­gles dur­ing our life­time. But if we live to eighty, it’s 50%. So your chance of get­ting Shin­gles is actu­al­ly pret­ty high. Now, not every­body is going to get post her­pet­ic neu­ral­gia, but the chance of get­ting Shin­gles is high. And you can’t choose whether you get post her­pet­ic neu­ral­gia or not. So real­ly, the only choice you can make is to pre­vent get­ting Shingles. 

Evans: So that vac­cine is all-important? 

John­son: Yes. I don’t like being a scare mon­ger. But I have to say, I would­n’t want long stand­ing post her­pet­ic neu­ral­gia. I think it’s well worth avoid­ing. If the vac­cine were a dan­ger­ous vac­cine, I’d take a dif­fer­ent, more bal­anced view on that. But the vac­cine is not [dan­ger­ous]. It is a live atten­u­at­ed vac­cine. The virus has been treat­ed in a way where it does not cause a dis­ease of any inter­est at all. It’s been used for many, many years in a much more dilute form to give to chil­dren in Amer­i­ca. In fact, since 1995, I think. All chil­dren have been giv­en this vac­cine to pre­vent chick­en­pox and the one we use for Shin­gles is exact­ly the same virus, but in a rather larg­er dose. The only rea­son for the larg­er dose is, as we get old­er, as we’ve said, our immune sys­tems are less effec­tive. There­fore, to get a response to the vac­ci­na­tion, it has to be a stronger dose of the virus that’s given. 

Evans: Well, going back to child­hood. It’s the same chick­en­pox virus that resides in your body. If you don’t get chick­en­pox as a child, you can’t get Shingles. 

John­son: That is true. Most of us are not aware per­haps that we had chick­en­pox. And we rely on our par­ents to have told us that. But we do know from test­ing blood sam­ples in large num­bers of peo­ple that in this part of the world [over] 95% of peo­ple have had chick­en­pox by the time they reach the age of say, twen­ty. So it is almost uni­ver­sal, that we have had chick­en­pox, so vir­tu­al­ly every­body is pos­si­bly going to get Shingles. 

Evans: If you’re vac­ci­nat­ed while you have Shin­gles, will that help stall the post her­pet­ic neuralgia? 

John­son: No, it’s too late. By the time the vaccine’s actu­al­ly had an effect… As we know with COVID vac­ci­na­tion, we’re told that it’s two to three weeks away before we get an effect, well, it’s the same, and it would­n’t have any ben­e­fi­cial effect, no. 

Evans: Well, the oth­er thing is, you men­tioned COVID. We’re record­ing this towards the end of June 2021, where the UK, like many oth­er coun­tries, may be fac­ing its third wave of COVID-19. If you have the Shin­gles vac­cine, will it affect the COVID vac­cine or vice versa? 

John­son: I don’t think there’s been any spe­cif­ic work on this. My opin­ion on this would be that it would be not sen­si­ble to have it with­in two or three months of the COVID vac­cine for no par­tic­u­lar­ly good sci­en­tif­ic rea­son. But just a hunch that I think beyond that, yes, [it’s] per­fect­ly rea­son­able to go ahead with Shin­gles vaccination. 

Evans: Dr. Roberts John­son. I’ll just remind you that whilst we in Pain Con­cern believe infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judg­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. They’re the only peo­ple who know you and your cir­cum­stances, and there­fore the appro­pri­ate action to take on your behalf. Do check out Pain Concern’s web­site at where you can down­load all edi­tions of Air­ing Pain and find a wealth of sup­port and infor­ma­tion mate­r­i­al about liv­ing with and man­ag­ing chron­ic pain. So the Shin­gles vac­cine is a major step to avoid­ing hav­ing Shin­gles and, there­fore, post her­pet­ic neu­ral­gia. But what’s around the cor­ner? Amitripty­line, a drug com­mon­ly used for the treat­ment of chron­ic pain, includ­ing Shin­gles was men­tioned ear­li­er. Robert Johnson: 

John­son: Well, there are two ways of using amitripty­line one is to treat the pain once it’s occurred. But there is a view that amitripty­line in low dos­es may actu­al­ly pre­vent post her­pet­ic neu­ral­gia if it’s tak­en short­ly after the Shin­gles has com­menced. And there is about to be a large study test­ing whether this is true. Peo­ple who present to their gen­er­al prac­ti­tion­er with Shin­gles in cer­tain parts of the coun­try will be invit­ed to take part in the study and they will then be offered a low dose amitripty­line or a dum­my, a place­bo, to assess whether it real­ly works or not. We would then be look­ing at whether the amitripty­line pre­vent­ed post her­pet­ic neu­ral­gia or not. There have been studies‑, not total­ly sat­is­fac­to­ry studies‑, which indi­cate that it may well do so. 

Evans: So that, if it works, would be tak­ing the amitripty­line… you would­n’t have to do that before you had the Shingles? 

John­son: No, you would start as soon as pos­si­ble after hav­ing the Shin­gles. [It is a] lit­tle dif­fi­cult to say how long [it] would go on for. We’re test­ing it for sev­en­ty days, and then look­ing for post her­pet­ic neu­ral­gia. After that it would cer­tain­ly not be intend­ed to be a long term use, it would be a short term use to see if it pre­vents post her­pet­ic neu­ral­gia developing. 

Evans: Dr. Robert John­son. I rec­om­mend that you look at the Shin­gles Sup­port Soci­ety web­site at And there you can find a trea­sure trove of reli­able infor­ma­tion to sup­port liv­ing with and man­ag­ing Shin­gles and post herpetic 

neu­ral­gia. There’s infor­ma­tion for patients and health­care pro­fes­sion­als. Now, if we’ve left you in any doubt about the impor­tance of at least con­sid­er­ing get­ting vac­ci­nat­ed against Shin­gles, I’ll leave you with Jan Fisher. 

Fish­er: 100%, please get the vac­cine, do not risk hav­ing any sort of long term after effects of it. And even if they’re short term effects, for that length of time that you have it, your life will change. It will change and there’s no doubt about it. And yes, there could be more seri­ous ill­ness­es which could afflict you, but it real­ly does damp­en the spir­it, it’s depress­ing, it’s painful. It’s a social dis­ease because you can­not go out, you can­not socialise once you’ve got it because you can’t par­tic­i­pate. So 100%, 1,000% don’t ever ever risk get­ting where I’m get­ting it. Once you’re offered it, get it. 


  • Dr Michael Ser­pell, Con­sul­tant in Anaes­the­sia & Pain Med­i­cine at Stob­hill Hos­pi­tal Glasgow. 
  • Mar­i­an Nichol­son, Direc­tor of the Her­pes Virus­es Asso­ci­a­tion & Shin­gles Sup­port Society. 
  • Dr Robert John­son, Hon­orary Senior Research Fel­low, Bris­tol Med­ical School, Uni­ver­si­ty of Bristol. 
  • Jan Fish­er, had the Shin­gles virus & lives with Post Her­pet­ic Neuralgia. 

More infor­ma­tion: