‘I lost a decade of my life to pre­scrip­tion drugs’

The Daily Telegraph - Telegraph Magazine - - Contents - By Mi­randa Levy

Strug­gling to come off an­tide­pres­sants and tran­quil­lis­ers, and bat­tling with­drawal ef­fects, writer Mi­randa Levy, 51, thought she was very much alone – un­til she stum­bled on a re­port of­fi­cially ac­knowl­edg­ing a pill-ad­dic­tion cri­sis, and started to find other women with sim­i­lar sto­ries. Pho­tog­ra­phy by So­phie Har­ris-tay­lor

EIGHT WEEKS AF­TER I stopped be­ing able to sleep, I had an ap­point­ment with an NHS psy­chi­a­trist. It was au­tumn 2010, and the sleep­ing tablets and an­tide­pres­sants pre­scribed by my GP hadn’t worked. I was so ex­hausted I could barely speak. The con­sul­tant was com­pas­sion­ate, but just to make sure, I begged him to pre­scribe me some­thing that would ‘buy’ me some rest. I was

prac­ti­cally hug­ging him round the knees.

He lis­tened with sym­pa­thy to the story of how I’d dis­cov­ered my hus­band wanted to call time on our mar­riage, and then my dis­tress had plunged me head­long into dis­abling in­som­nia. He agreed that I needed a bit of ex­tra help, so ‘upped’ my an­tide­pres­sant and pre­scribed me a tran­quil­liser called clon­azepam – part of the ben­zo­di­azepine drug fam­ily, aka ‘ben­zos’.

The clon­azepam ini­tially bought me some snatched pe­ri­ods of sleep, and a pleas­ant fuzzi­ness in the hours in be­tween. But this re­lief didn’t last. At my first fol­low-up, the con­sul­tant in­creased the pre­scrip­tion. I think he then upped it again over the phone (my mem­o­ries of that time are a bit blurry). Then I had the knotty prob­lem of need­ing and want­ing more, but also know­ing that Ben­zos Are Bad, and I should prob­a­bly come off them.

There then fol­lowed over five years of de­pen­dence, abuse (I hadn’t ever had any prob­lems with al­co­hol or recre­ational drugs, and haven’t since) and hor­ri­ble, hor­ri­ble with­drawal symp­toms when I did de­cide to come off. I couldn’t sleep, ei­ther.

Af­ter a long strug­gle, I fi­nally came off the ben­zos en­tirely in 2015, and suf­fered a pe­riod of af­ter-ef­fects that in­cluded ago­ra­pho­bia and an in­abil­ity to read a book or even type. I now be­lieve these were lin­ger­ing symp­toms known as ‘pro­tracted with­drawal’. From around Fe­bru­ary this year, I grad­u­ally started to feel healthy again, and tried to look for­ward and put my lost decade be­hind me.

Un­til two months ago, when a front-page news story caught my eye. ‘At Last, Ac­tion To Beat Pills Cri­sis,’ shouted the head­line. It was about the find­ings of Pub­lic Health Eng­land, an ex­ec­u­tive agency of the De­part­ment of Health and So­cial Care, call­ing for the Gov­ern­ment to help peo­ple whose lives have been blighted by pre­scrip­tion drugs in­clud­ing an­tide­pres­sants, tran­quil­lis­ers and painkiller­s. Key rec­om­men­da­tions were a helpline, tougher guide­lines on pre­scrib­ing, and ac­knowl­edge­ment that with­drawal from an­tide­pres­sants can cause health prob­lems. Ac­cord­ing to the re­view, 11.5 mil­lion pa­tients in Eng­land have re­ceived one or more pre­scrip­tions in the past 12 months for at least one of a class of five po­ten­tially ad­dic­tive drugs. These are: an­tide­pres­sants, opi­oid painkiller­s, ben­zo­di­azepines (tran­quil­lis­ers such as Val­ium, which is di­azepam), gabapenti­noids for neu­ro­pathic pain and ‘z-drugs’ for in­som­nia. And 17 per cent of the adult pop­u­la­tion were pre­scribed an­tide­pres­sants be­tween 2017 and 2018.

This was big news, es­pe­cially the of­fi­cial ac­knowl­edg­ment of an­tide­pres­sant with­drawal ef­fects. Sud­denly, they came blink­ing into the sun­light: the ‘mid­dle-class’ pre­scrip­tion ad­dicts who for years had been called at­ten­tion-seek­ing by their GPS, with ‘med­i­cally un­ex­plained symp­toms’. Also vin­di­cated were the sym­pa­thetic psy­chi­a­trists who’d been seen as out­liers with a ven­detta against phar­ma­ceu­ti­cal com­pa­nies.

I was as­ton­ished to re­alise there were so many women who had suf­fered in a sim­i­lar way. And, yes, most of them were women.

‘The main suf­fer­ers of pre­scrip­tion-med­i­ca­tion with­drawal are white women over the age of 45,’ says Dr David Healy, a pro­fes­sor of psy­chi­a­try at Ban­gor Univer­sity and au­thor of 20 books in­clud­ing Phar­maged­don . For some rea­son this is not ad­e­quately ex­plained in the psy­chi­atric lit­er­a­ture. ‘We know how to put peo­ple on these drugs, we just don’t know how to get peo­ple off them,’ says Healy. ‘The Pub­lic Health Eng­land statis­tics hide a se­ri­ous story. Yes, there are 7.3 mil­lion pre­scrip­tions a year for an­tide­pres­sants, but many of these are re­peats.’ Twenty years ago, he says, most peo­ple went to their GP with a ‘clean slate’. ‘Now many are on some­thing, and it’s of­ten a psy­chotropic drug they just can’t give up,’ he says. ‘I’m not anti-med­i­ca­tion – I think drugs have their place but pa­tients need to know the risks.’

So these ‘dis­con­tin­u­a­tion symp­toms’ (as they used to be eu­phemisti­cally called) are real? ‘Oh yes,’ says Healy. ‘Put it this way, if the factories that make these drugs blew up to­mor­row, we’d have a se­ri­ous prob­lem.’

Pre­scrip­tion-pill ad­dic­tion is one of the big­gest health is­sues of the day, he says. Healy has been warn­ing about the dan­gers of se­lec­tive sero­tonin re­up­take in­hibitors (SSRIS) – a class of an­tide­pres­sant pre­scribed as a ‘first-line treat­ment’ – since the early 1990s. That was the time when SSRIS such as Prozac were be­ing mar­keted as the drugs that made you ‘bet­ter than well’. ‘GPS handed SSRIS out willy-nilly,’ he says. ‘They were seen as prefer­able to Val­ium, as some­thing that was non-ad­dic­tive, “I can’t get into trou­ble tak­ing them.”’

It tran­spired that peo­ple were stay­ing on SSRIS as it was sim­ply too un­pleas­ant to quit. ‘Some have been on an­tide­pres­sants for decades be­cause when they stop, they feel worse,’ says Dr Healy.

Peo­ple like Re­bekah Hock, 36, a wed­ding dress de­signer from Leeds. Re­bekah’s doc­tor put her on ven­lafax­ine af­ter a late mis­car­riage, fol­lowed by a trau­matic birth with her son Oskar. ‘I hadn’t had any men­tal health prob­lems be­fore Oskar was born,’ she says. ‘But when he was three months old, I was still tear­ful, not sleep­ing, not able to bond with him. My GP re­ferred me to the Peri­na­tal Clinic at Leeds Gen­eral In­fir­mary.’ The psy­chi­a­trists there di­ag­nosed Re­bekah with ‘post­na­tal anx­i­ety’ and put her on ven­lafax­ine, a sero­tonin and no­ra­drenaline re­up­take in­hibitor (SNRI), another fairly com­monly pre­scribed type of an­tide­pres­sant. ‘The only things I re­mem­ber them say­ing were that the pills may af­fect my li­bido, which was the last thing on my mind at the time, and to talk to my GP if I wanted to stop,’ she says.

Re­bekah felt she im­proved on the drug. ‘My con­fi­dence came back. I started so­cial­is­ing and ex­er­cis­ing again. But af­ter about 18 months my hus­band sug­gested that, given I was do­ing so well, maybe I should come off it. I went to my GP, who sug­gested I im­me­di­ately halve my dose. I fol­lowed her ad­vice, and didn’t feel too bad, ac­tu­ally.’ But when Re­bekah started cut­ting back on the re­main­ing half, she re­alised it was ‘too much’. ‘I walked into my doc­tor’s surgery, took one look at her, and burst into tears,’ she says. ‘My anx­i­ety had come back much worse than be­fore. I felt sick and shaky. I couldn’t eat – I lost half a stone in a month, and I was only 8st to be­gin with. I can’t think what else it could have been, but with­drawal from the an­tide­pres­sant.’

Af­ter my phone call with Re­bekah, she sent me a list of her with­drawal symp­toms from ven­lafax­ine. They in­cluded de­pres­sion, un­con­trol­lable cry­ing, anger and an in­abil­ity to eat or sleep. ‘I had sui­ci­dal thoughts,’ she said. ‘I even con­sid­ered how to do it. Only fo­cus­ing on my son and my hus­band stopped me from do­ing it.’

An­tide­pres­sants are the most widely pre­scribed drug in the Pub­lic Health Eng­land re­port, but there are still doc­tors, in­clud­ing the psy­chi­a­trist I saw, who pre­scribe other drugs – specif­i­cally ben­zo­di­azepines – more than they should. The risks of de­pen­dence and with­drawal symp­toms from ben­zos have been well known for decades.

The of­fi­cial take from the Na­tional In­sti­tute for Health and Care Ex­cel­lence (NICE) is: ‘Ben­zo­di­azepine hyp­notics should be used only if in­som­nia is se­vere, dis­abling or

‘The main suf­fer­ers are white women over the age of 45,’ says Dr David Healy

caus­ing the per­son ex­treme dis­tress. The low­est dose that con­trols symp­toms should be used for a max­i­mum of four weeks, and in­ter­mit­tently if pos­si­ble.’

Ben­zos work dif­fer­ently to an­tide­pres­sants, in that you ac­tively crave them. As hap­pened to me, many pa­tients quickly be­come tol­er­ant to their pre­scribed dosage, then take more than the la­bel on the box dic­tates to achieve the same ef­fect, which means they run out early, and have a gap be­tween the last pill and the next pre­scrip­tion. Mon­day morn­ings would see me hop­ping from foot to foot out­side the chemist’s, pray­ing the phar­ma­cist wasn’t de­layed by a traf­fic jam.

I ini­tially tried com­ing off the ben­zos with out­pa­tient ad­vice from a spe­cial­ist psy­chi­a­trist. The with­drawal ef­fects – un­bear­able anx­i­ety, sweat­ing, nau­sea – were so se­vere that I couldn’t con­tinue. I did some re­search on­line and chose a rehab clinic whose web­site de­clared it had ex­pe­ri­ence in help­ing peo­ple off pre­scrip­tion pills. When I ar­rived, they said, ‘We’ve only had one like you be­fore.’ I stayed six weeks at £2,000 a week. Sick and mis­er­able, I left on less than half the dose I’d gone in with, but felt a fail­ure – I didn’t re­ally ‘get’ the 12-step pro­gramme, nor iden­tify with the sto­ries of the other ad­dicts.

And here’s the crux of the prob­lem: where do peo­ple like me go for help? Be­cause – apart from a few web­sites, un­der­manned helplines and an on­line DIY re­duc­tion pro­gramme called The Ash­ton Man­ual – there isn’t much out there at the mo­ment.

Anne* is 41 and a for­mer HR ad­min­is­tra­tor. She hasn’t worked since 2012 be­cause of prob­lems with pre­ga­balin, a nerve painkiller in­creas­ingly pre­scribed for anx­i­ety, and one of the ‘big five’ (see box on pre­vi­ous page). ‘When I was try­ing to come off pre­ga­balin I felt so iso­lated,’ she says. ‘No one re­ally talked about pre­scrip­tion-pill ad­dic­tion, and hardly any­one had heard of this drug. I had nowhere to go, and at times I wanted to die.’

Anne was pre­scribed pre­ga­balin for se­vere anx­i­ety re­lated to work, as well as chronic joint pain. ‘The doc­tor wanted to try me on a new drug,’ she says. ‘I didn’t ask many ques­tions – I trusted her. The first pill worked like a dream: I felt “back in my body”, my pain less­ened and my ag­i­ta­tion dis­ap­peared.’ The sec­ond course didn’t work nearly as well. ‘Even so, I stayed on it for about six months. Then, one day, I de­cided there wasn’t much point tak­ing it: I wanted to be drug-free. So I just stopped. And sud­denly, I was in hell.’

Anne was soon hit with ter­ri­ble stom­ach cramps. ‘I couldn’t get off the loo,’ she says. ‘I had night sweats, and I couldn’t sleep. I didn’t know what was go­ing on. It took me two weeks to go back to the doc­tor be­cause I couldn’t think straight. But, fi­nally, I twigged it must be some­thing to do with stop­ping the pre­ga­balin.’ Anne’s GP told her she’d been on such a small dose that she couldn’t pos­si­bly be suf­fer­ing from with­drawal symp­toms, that it had to be a re­lapse in her orig­i­nal men­tal-health con­di­tion. (I’ve heard doc­tors say this quite a lot.) Anne per­sisted. In the end, her GP sent her away with a tiny dose of pre­ga­balin.

‘As soon as I started tak­ing it, I felt bet­ter,’ she says. ‘I then be­gan open­ing the cap­sules, di­vid­ing up the pow­der and tak­ing smaller and smaller quan­ti­ties over a pe­riod of two weeks. I felt ab­so­lutely dread­ful, but at least I was in con­trol.’ Anne has now been drugfree for al­most six years. ‘But I still don’t feel right,’ she says. ‘I feel jit­tery and on edge, in a way I never did be­fore tak­ing the pre­ga­balin. My joint pain is still there. I don’t want to be a scare­mon­ger, but that’s my ex­pe­ri­ence.’

The prob­lem, says Dr Healy, is that the med­i­cal pro­fes­sion doesn’t re­ally know what to do with pre­scrip­tion-drug users. ‘We don’t have much of an idea,’ he says. ‘There’s no re­li­able way to get off. Ta­pers can help many peo­ple stay safe, but not ev­ery­one.’ A ‘taper’ is, as it sounds, a grad­ual re­duc­tion pro­gramme, where the med­i­ca­tion is cut down in in­cre­ments un­til the user is off it com­pletely. Pro­fes­sor Heather

Ash­ton of New­cas­tle Univer­sity was re­spon­si­ble for the epony­mous man­ual, avail­able on­line, which up to now has been the go-to re­source for peo­ple with­draw­ing from ben­zos. Some ex-suf­fer­ers are cam­paign­ing on so­cial me­dia for the NHS to of­fer ‘taper strips’ – pre­scribed and read­ily pack­aged de­creas­ing doses that ex­ist in Hol­land.

Marion Brown, a re­tired ther­a­pist based in He­lens­burgh, near Glas­gow, has made it her vo­ca­tion to help peo­ple with­draw­ing from pre­scrip­tion medicines. ‘There’s no fund­ing to re­search this prob­lem, be­cause sci­en­tific stud­ies are funded by drugs com­pa­nies,’ she says. ‘And the forms used by GPS to log “med­i­cally un­ex­plained symp­toms” are paid for by phar­ma­ceu­ti­cal man­u­fac­tur­ers.’ Back in 2013, a client asked Marion to set up a so­cial-me­dia net­work to help suf­fer­ers; @re­cov­er2re­new be­gan on Twit­ter in 2015. But ‘we’re just a small group’, she says. ‘The best re­source is an Amer­i­can one, thein­ner­com­pass.org.’ Sim­i­larly, Healy is on the team be­hind rxisk.org, a web­site that sup­ports peo­ple de­pen­dent on pre­scrip­tion drugs.

So what of the Pub­lic Health Eng­land re­port? ‘I wel­come it, it’s good to have,’ says Healy. But helplines and guide­lines do not help un­less there’s a gen­eral ac­cep­tance that this is a se­ri­ous is­sue. At the mo­ment I’m not sure we have that. A sur­vey last month by the men­tal-health char­ity Mind showed that four in five of those asked had not been told the potential side ef­fects of their med­i­ca­tion.

Healy would like to see prop­erly funded re­search into how and why cer­tain drugs cre­ate de­pen­dency. ‘For ex­am­ple, most stud­ies only last for 12 weeks,’ he ex­plains. ‘We need an ex­am­i­na­tion of the longer-term ef­fects of an­tide­pres­sants and al­lied med­i­ca­tion. Of why peo­ple be­come ad­dicted, and how to taper ef­fec­tively. Ta­per­ing doesn’t work for ev­ery­one – some pa­tients still have se­vere with­drawal symp­toms.’

In the mean­time, there are the sur­vivors. We are still here, but at a cost. Anne suf­fer­ers from chronic fa­tigue, and can­not go out in crowds. So ter­ri­fied is Re­bekah of suf­fer­ing post­na­tal de­pres­sion and need­ing ven­lafax­ine again, she’s un­sure about whether to have another baby. I suf­fered a nine-year dent in my ca­reer, lost my job as a mag­a­zine ed­i­tor and gained a stack of weight. Would these things have hap­pened any­way? Of course, it can be ar­gued that they were down to our ‘orig­i­nal con­di­tion’. But when the thou­sands of peo­ple suf­fer­ing from pre­scrip­tion-pill ad­dic­tion fi­nally feel brave enough to step out of the shad­ows, these sto­ries will be­come harder to ig­nore.

‘No one re­ally talked about pre­scrip­tion-pill ad­dic­tion. At times I wanted to die’

‘I WAS AS­TON­ISHED THERE WERE SO MANY WOMEN WHO HAD SUF­FERED IN A SIM­I­LAR WAY’

Re­bekah Hock was pre­scribed the an­tide­pres­sant ven­lafax­ine

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