This is the Sixteenth Modern Myth featuring Crusoe. The Persecution series resumes next week with Brand Fascism.
The clinics were different now to what they had been.
The woman walked in, glancing at her hands as she came. Crusoe already knew what she would say. In days gone by peripheral neuropathies were rare. You saw one a year, perhaps in older people – more often women than men. The books talked of stocking and glove problems – the person with a burning or other odd sensation in their hands or feet. The books linked the problems to alcohol which was odd as it seemed to happen more in women than men.
But now it was becoming common and seemed to affect any age – often quite young women – who presented with burning feet. These weren’t peripheral neuropathies strictly speaking but if the person was referred to a neurologist that was the diagnosis they would end up with.
Nobody knew what was going on or how to treat it. People on triptans for migraine came in with strange sensations across their upper body. Those on antidepressants or benzodiazepines had burning feet.
Those on antibiotics like Cipro and Levaquin had the worst problem – especially it seemed to her, the men who had prostatism. If the treatment was stopped quickly, they might be left with no more than tingling sensations in their hands or feet. This wasn’t trivial – nothing that lasts for years is trivial. But if the treatment went on for longer, the problems could be anywhere round the body and were often much worse than tingling. Sometimes the person was left in constant disabling pain.
Worse again, if really badly affected, the neurologist might run tests on their nerves and the test reports would say working normally. She had seen lots of people told it was all in their mind and they were given a prescription for antidepressants.
The next woman brought her baby in. He was eighteen months old. He seemed slower than her first child had been she said. Was there anything she should be worried about? A quick check on the computer showed she had been on antidepressant during pregnancy.
Here was a dilemma. Crusoe was trained was to see variation in children as normal – in her generation there were boys who were tiny till late adolescence who later became the tallest people in the class, girls who at first seemed slow in school who later got first place in class exams. Some babies seemed to live on nothing while others were just voracious but they all ended up the same size.
So did she just advise the mother to do nothing that everything would be okay or did she tell her there was a possibility that the antidepressant might have caused a problem? She was seeing more and more of these children and still hadn’t worked out what the right thing to say was.
She’d heard a Ministry official on the evening news the previous day, asked about some drug and its problems, say that the Benefit-Risk ratio was still favourable. As long as a drug was still on the market, this is what they always said but what did it mean? It seemed to mean that it was more than the bureaucrat’s life was worth to start asking questions.
What bothered her as much as anything was a new problem that was linked to the disappearance of old one – there were fewer Romeos and Juliettes. There used to be a string of broken hearted adolescents looking for antidepressants. She tried her best to keep them off medications – you’re eighteen and in love – how do you expect to be feeling?
There still were some Romeos, but there was an increasing number of teenagers who seemed to have no interest in romance. At first she thought that it was one of those swings of the pendulum to Puritanism. Perhaps some new Just Say No campaign in schools was having an impact.
But when she fished, the kids knew what she was talking about but told her that she was a sexual and they weren’t. They just accepted it. Didn’t bother them. They’d never known any different.
What didn’t bother them bothered her. It bothered her that the same few drugs came up in their mother’s pregnancy records or in the kids records before they hit puberty.
Years ago she had met a a man who desperately wanted a limb removed. I’ll feel more like me without my right leg, doctor. This was in the early days of the Internet, and using Google before the word googling came into use, she found communities of “apotemnophiliacs”. Some people had probably always had feelings like this but others looked more vulnerable, uncertain of their own identities, and at risk of getting sucked in by a group like this. What would happen when they had a leg removed?
She could believe there might have always been some Asexuals around waiting for the Internet to shine a light on them. But lots of the kids she was now seeing had never accessed any Asexual websites. And there just seemed to be too many of them.
More and more she felt that if she voiced her suspicions to any of her colleagues, or even her friends, she would start feeling like an island unconnected to their mainland. Might be time to find a real island.
The woman with burning hands, the mother with the autistic baby or the asexual son, were in the same place as her – no-one wanted to know them. Was there any way to unite all these people, each marooned on their own island, this new Archipelago of the Shipwrecked?
The shortest novel in the English language, complete with its post-modernist twist, came to mind.
“Crusoe, we say, was rescued”.
Illustration: The Sea of Medicine, © 2014 created by Billiam James
Copyright © Data Based Medicine Americas Ltd.
Or at the very least, [Crusoe] was safely nestled in a cozy respite>>
This could be the Paps of Jura…or, is this, just pap?
The final definition of suicidal behaviour and self harm…my favourite is parasuicide………
GlaxoSmithKline Research and Development – Worldwide Epidemiology
Appendix 3. Suicidal Behaviour Definition
The code list below provides details of the final definition of suicidal behaviour and self harm used to select potential events on the GPRD. The list of GPRD medical codes to define suicidal behaviour was developed in the following steps:
1. An initial search of GPRD MEDCODE descriptions was conducted using a list of
suicide keywords. This keyword list was based on the terms used by clinical
investigators on the case report forms (CRF) in GSK Paroxetine clinical trials.
Potential codes were selected where the GPRD text description contained any of the
following text strings: “angry”, “attempt”, “attempted suicide”, “cut”, “deliberate”,
“drug overdose”, “gas”, “hang”, “hung”, “idea”, “intent”, “jump”, “mutilate”,
“overdose”, “parasuicide”, “plan”, “self”, “self damage”, “self harm”, “self inflict”,
“shoot”, “slash”, “suic”, “suic”, “suicidal ideation”, “suicidal plans”, “suicidal
thoughts”, “tend”, “think”, “thought”, “threat”, “viol”, “wish”. All searches were
conducted to allow codes to be identified if the text string appeared anywhere in the
text description. Searches for multiple words identified a match if the words appeared
in any order, so “self harm” would return matches on “self harm”, “self-harm”, “harm
self”, “harm to self” etc.
Thank you Dr Healy for opening my eyes.
It’s just a pity that those of us who want to see the truth are still in the minority.
The majority stumble on blind and unaware.
I am finding it fascinating yet frightening discovering this murky world of pharma that I stumbled into six months ago when my life was turned upside down by my sons SSRI withdrawal.
I felt powerless and lost in the aftermath and still do but reading your blog and knowing that there are people like you speaking out for people like my son gives me hope.
Billiam James illustrations are so powerful, he really does paint a thousand words.
Once again Thank you for all you do and I wish you all the best for 2015.
Thank you for mentioning the peripheral neuropathy caused by cipro and levaquin – fluroquinolone antibiotics!
So many drugs are damaging mitochondria that peripheral neuropathy is becoming the norm. It’s sad.
This is a very interesting article about mitochondrial dysfunction. It mentions peripheral neuropathy and topoisomerase interrupters, but it comes short of noting that topoisomerase interrupting drugs like fluoroquinolones deplete mitochondrial DNA and lead to peripheral neuropathy. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3412069/
Here’s an article on the mtDNA depletion caused by FQs – http://m.molpharm.aspetjournals.org/content/50/5/1178.abstract
Thanks again for noting the damage that FQs can do!
I feel too many Doctors are completely oblivious, possibly by choice, to the harm they are doing by handing out tablets that can cause so much damage to their patients. What on earth is going on/? I agree with Lisa when she says it is a ‘murky world’. Patients are so vulnerable.
Thank you so much Dr. Healy for your incredible work. I have been on psychiatric medication since my early twenties and around five years ago wanted desperately to come off all my medication. I am now 63. About two years ago my psychiatrist agreed to take me off my medication but I literally had to decide by myself how this would be done as he had no idea how to carry this out without me incurring the massive withdrawals. As a result I became delusional and paranoid and was put back onto medication. This is where I remain and at present it looks like it will be increased. My battle is still going on but I have not given up although it is tremendously difficult to withdraw with no support whatsoever from my MHT.
I think this is very common today with quite a great deal of medication and withdrawals take a dominant factor in a patient deciding to stay on treatment. Doctors and nurses seem oblivious and seem also not to be concerned at what is actually happening to their patients.
Thank you so much once again for your wonderful work.
I have peripheral Neuropathy. I had a mastectomy 5 years ago. When I came round after the operation I told the Doctor my hands and feet were numb. I was told it was a side effect of the anaesthetic and would wear off. It didn’t. It took a 2 year fight to see a Neurologist. He stuck needles into my arms and legs, then said “Are you a diabetic?” No I’m not. “Did you have Chemo?” No I had Radiotherapy. He then diagnosed PN, but didn’t know why I had it. I didn’t have any of those medicines nor had antibiotics prior to the operation. . Suicide has crossed my mind when I have a bad day and it feels like I am walking on broken glass. Gabapentin eases the foot problem but doesn’t cure it. My own Doctor believes I may have been oxygen deprived during the operation as I also lost around 30 years of memories. Has anyone else developed PN like this? PN is bad enough without having an answer to why I have it. Recently the num feeling has spread up my shins, which is worrying.
Can you get your medical records and find out the name of the anaesthetic – no one ever knows the name of the drug they are given to fall asleep – and so no reports ever get filed on this group of drugs that can cause psychosis, delirium, peripheral neuropathy and lots else besides.
Worth checking what drugs you are on now – some may be contributing to it. Gabapentin can be pernicious – relieving pain and some problems but often at a cost of causing more of what it appears to be relieving
I spent quite a lot of time over Christmas reading posts from your blog that I hadn’t read before – stimulated by the last Crusoe, and the woman with the hot/burning hands. When you put my Olanzapine posts on the Rxisk website, with a sub heading “hot heavy foot” – I thought that was because it was so bizarre (and funny). Now I discover it was because burning hands and feet were very well known – just not to me. Or my psychiatrist.
Reading the posts was a mixed experience – you write so well and I desperately wanted to put a comment on each of them, but got weary – what would I say each time? Yes, this happened to me? Yes, Pharma is every bit as bad as you describe? Yes, if you take a Rxisk report to your GP or consultant – the shutters will come down.
I find online sharing of experiences helpful and depressing. Such a wealth of experience and anger – some of which moves me to tears. But in the end – where does that end up? The online world is essentially transient – a topic will generate interest for a week or so, and then die. It is very life enhancing to feel that one is not alone – but in the end we remain isolated voices because we lack the warmth of human contact.
We cannot see the other person’s tears, or observe their body language, or access subtleties of voice inflexion – or carry on finding out more about each other’s circumstances. What led us to your blog usually remains unknown. We do not know whether other commentators are medics, scientists, lawyers, victims or a combination – although it is often possible to tell those who have been directly harmed.
I used to find the insane world of “below the line” comments on a published newspaper article amusing – until Clare Allen, the Guardian writer on mental health matters, was harried and abused. I wonder how much that contributed to her year of severe depression – and consequently find myself wondering what sort of a world we live in when strangers can do that to a brave person who has written so movingly of her experiences. There seems to be a profound and frightening lack of respect for human dignity, difference and opinion online.
I have thought regularly about starting a blog myself – but who would read it, other than people like me. It would be akin to health and diet advice read by the thin and fit – the already converted. Those who stalk the Internet ready to challenge dissident voices probably would, but solely to undermine what I wrote.
Although I suspected that a great deal of internet information was monitored, manipulated and “lost” by the pharmaceutical industry – discovering one example, Formerly 98 was a shock to me. I thought he was just a nuisance – a bit of a sad geek, ably chased off by you when he was the first to comment on my description of withdrawal from olanzapine. Recently I wanted to check the meaning of a “surrogate outcome” in a trial – thought the Wikipedia entry was a bit odd, so went onto the editing forum – to find Formerly 98 lurking there. Which led me to his Wikipedia editor’s profile – and the fact that he is currently rewriting the entry on the pharmaceutical industry.
Who is he? Has he got a cushy retirement job doing such things on behalf of industry? Who did he/does he work for? – these are all rhetorical questions. But I have developed a profound mistrust of almost all sources of information.
And social media – the power of Twitter is awesome – witness the chivvying of the unrepentant rapist footballer, Chad Evans. But Twitter storms are just that – they boil up, crackle furiously and dissipate. What use are they really in the long term? Too much Twitter gives me a hung over feeling. And nuanced debate is simply impossible in 240 characters….
Rxisk and your blog are outstanding in that discussion usually remains on course and relevant. But many others I start with interest, then dip out, feeling slightly sick, when the debate degenerates into a bitter argument between people who are mostly on the same side, but seem unable to tolerate variations in viewpoints. (This was reinforced when Bob Fiddaman, for whom I have great respect, referred to two commentators on his blog who had well nigh destroyed his desire to carry on – just this Christmas).
I found a similar thing in the service user movement in the 2000s – destructive internecine arguments (two hours of a support group meeting were spent hurling insults because one member’s surname had inadvertently been left on the minutes of the previous meeting…minutes which were only ever going to be read by members of the group….).
So, writing (and policing) a blog is probably beyond me although I would be extremely happy to contribute to the Rxisk website at any point.
I think that all I can realistically do, is to bash on writing my book. Maybe it’s an age thing – my children, in their 30s, are much more comfortable gaining their information online. For me – power lies in words on a page, which can be read, marked, reread, kept or passed on. Borrowed from a library, put on student reading lists, reviewed in a newspaper or on the radio. And because the story is mine, I control the narrative – I won’t have to break off and defend myself.
I used to sob, “Where are the people like me?” when I was struggling to stay afloat in the mental health system. And afterwards, when I was coming to terms with the aftermath. They are there, I know, but if the seroxat supporters group can’t coordinate with the benzo buddies – and certain activists spit with rage about you because you have a different view about ECT – we all just remain brief bursts of electronic activity, as isolated from each other as stars in the galaxy.
I wrestle with the major problem of just how the patients’ revolution you have written about could ever happen in a world where discussion and tolerance seem debased. (Witness the rapid polarization of debate about Charlie Hebdo, and freedom of speech). Extreme stances are assumed and defended to the death: psychologists utterly reject medical explanations, psychiatrists and doctors will not concede harm done by medication, supporters of RCTs cannot see the dangers they pose. Nothing, nothing is ever that simple.
Agree its difficult to see where a revolution will come from if people nitpick about finer points of this or that drug But the common experience across drugs is of not being listened to – of being powered out as some peer supporters put it. This is really what RxISK is about – trying to find common ground in drawing attention to the ways the system dehumanizes us but more important in finding ways to restore some humanity to it. Those of use who get given drugs are the ones who suffer but the system is becoming increasingly intolerable for doctors also.