Illustration: Juggling Act © 2020 created by Niki McQueen
Balance in Balancing Our Bodies and Our Selves and Juggling or coordinating Our Selves and Our Bodies are closely linked. Life is a Tightrope Walk and Paul Klee’s Tightrope Walker, emphatically concerned with his balance, features in Balancing.
Once spotted Niki McQueen’s extraordinary Juggling Act had to open this post. The words of this and last week’s posts can’t match the truth that Juggling Act captures. Even if we don’t think of ourselves as jugglers, we have been juggling our bodies since infancy and mostly manage it remarkably well. Niki agreed to this use of Juggling Act but it should not be used further without her permission. Her website will introduce you a lot more of her art.
The Juggler and his Art, a brief history of juggling, brings out a key point – any skill needs endless practice and becomes a matter of muscle memory. Brains get in the way – muscles and other bodily bits are where the intelligence lies.
Our bodies can and do drop things when juggling or we can fall from tightropes. This is more likely when faced with novel situations or if we start drugs that disturb our coordination. Dropping things is not an illness and definitely not a mental illness. See Ondine’s Curse.
In my teens, I was asked to a meal at a girlfriend’s house with her parents who seemed stern to me. I still remember the difficulty juggling eating, breathing and speaking. The memory later led me to add this cartoon to lectures on the Circadian Rhythms that shape our automatic behaviors – most of our behaviors are automatic.
Automatic behaviors like balancing, sleeping or eating don’t get put right by thinking about them. Our bodies normally manage the automatic stuff – at the same time feeding flickering stimuli to our brains that, just as the flickering of a fire does, can conjure up images like Juggling Act.
Juggling Meds
Valproate, aka sodium valproate, semi-sodium valproate, divalproex sodium, Epilim, Depakote, Depakine, Depakene, valpromide, valproic acid and more began life in a strange way.
In the 1940s, a bad case of anti-teutonism made life difficult for some Europeans, to the point where they had no butter. They had to conjure up other spreads to put on bread. One of these was valproic acid, which the German pharmaceutical firm, IG Farben, also began using as a diluent for drugs. It remained in use as a diluent afterwards.
In 1962, Pierre Eymard, doing a PhD with Georg Carraz in Grenoble, needed to dissolve an ancient herb, Khelline, to investigate its anti-spasmodic reputation further. Carraz mentioned valproic acid. The combination produced more relaxation than expected. Carraz suggested testing valproic for relaxant and anti-convulsant effects. It turned out to be an anti-convulsant.
Back then, patients with epilepsy often ended up in mental hospitals. Carraz asked Pierre Lambert, a local psychiatrist, to try it out. Valproic seemed to do more than just manage convulsions. Ward staff thought it benefitted the personality of patients. This may have meant it just didn’t have the bad personality effect barbiturates often had.
People taking it seemed less irritable, less impulsive, less egocentric. Lambert gave valproate to manic-depressive patients and found that like lithium it could help – see Pierre Lambert and Colleagues Exploring a New World.
In 1980, DSM-III conjured Bipolar Disorder out of Manic-Depression. Abbott held a US license for sodium valproate as an anticonvulsant. Patenting semi-sodium valproate as a more stable salt, they put the ‘new drug’ into trials for Bipolar Disorder and got a license to make the United States Bipolar. Helped by Abbott, US doctors discovered abilities to perceive 40 shades of Bipolar Disorder.
Bipolar Disorder exploded, even more so when a new generation of antipsychotics like Zyprexa piled in. Getting licensed to claim you could cure Manic-Depression is almost impossible. But companies who ran trials showing a hint of benefit in manic states – which any sedative will do – could get licensed for Mania.
Once licensed for mania, everyone could use a word Abbott invented – Mood-Stabilizer. Mood stabilization suggests a drug can do what companies can’t prove – reduce the number of bipolar episodes. FDA don’t regulate words like Mood-Stabilizer. The number of Depressive Episodes bipolar folk now have has increased dramatically since the 1980s. The increase tracks increases in the word Mood-Stabilizer, which this graph from The Latest Mania shows.
Selling Bipolar Disorder was an early example of the disease mongering that now leads to epidemics like ADHD, Autistic Spectrum Disorder and others arriving almost overnight out of nowhere – The Great Silence. This is a bit like the arrival of Covid except unlike Covid, we know precisely which laboratories these infections get cooked up in.
Abbott tried the same thing for BPSD – behavioral and psychological symptoms linked to dementia – arguing Depakote would be more gentler for folk in residential care than the antipsychotics they would otherwise get. FDA were in a refusing licenses for BPSD phase, quite unlike their extraordinary licensing of Brexpiprazole for BPSD last year.
The Mania for Bipolar Disorder:
- Led Americans first, and the rest of us later, to start diagnosing in utero a condition previously not seen before the mid-teenage years – and then rarely.
- Transformed lamotrigine, topiramate and gabapentin into Mood-Stabilizers – on no more basis than they are also anticonvulsant.
- Claimed antidepressant induced suicidality showed you really had bipolar disorder and needed Mood-Stabilizers
- Created prescribing cascades from SSRIs to anticonvulsant and antipsychotic mood stabilizers and then ADHD diagnoses because of loss of focus and ultimately a teenage polypharmacy epidemic.
- Led FDA to hide the data that anticonvulsants trigger suicides as often as SSRIs whether given to folk diagnosed with bipolar disorder, migraine or the many other conditions these drugs are now given for.
- We now have teenagers on bucket-loads of these drugs, almost all of which cause birth defects, and in the case of Valproate – transgenerational birth defects. See Facts about FACS.
- Part of the problem is that these drugs have a Symptoms on Stopping profile very similar to the also anticonvulsant Benzodiazepines – see Coming off Depakote – both drug groups can be impossible for some to stop.
Clumsy Me?
RxISK’s Drug Search Tool helped research for Balancing Our Bodies. For almost any drug you can find the 100 or 1000 most common things reported to FDA. Or you can enter a reaction like Dizziness, Vertigo, Tinnitus or Visual Snow and find what drugs have been reported to cause it.
Balance brought discoordination, gait disturbance and clumsiness into the frame. If drugs affect our peripheral nerves more than our brains, and change sensory receptors in muscle and bones, you’d expect clumsiness just as much as dizziness. But there is little clumsiness in FDA reports. Its not a medical term. Dyspraxia is the medical term. Bingo.
There aren’t a huge number of reports of dyspraxia, and they likely come from doctors. The 100 commonest reports amounted to 585 reports only.
Anticonvulsants
- Valproate 143
- Lamotrigine 38
- Carbamazepine 33
- Pregalin/Gabapentin 15
- Levetiracetam 4
- Total 233
Benzodiazepines
- Clonazepam 9
- Diazepam 9
- Temazepam 6
- Clobazam 5
- Lorazepam 4
- Total 33
Antidepressants
- Paroxetine 16
- Mirtazapine 16
- Sertraline 12
- Citalopram 5
- Duloxetine 3
- Venlafaxine 3
- Total 55
Something like 320 of the 585 most common dyspraxia reports come from these drugs – around 50%. Valproate alone had close to one quarter of the reports. There can’t be many drugs that dominate reports of a problem this much – except of course SSRIs with PPPD and Visual Snow.
Another adverse event search option is Apraxia which throws up broadly overlapping results as those for Dyspraxia but which bring out a bigger contribution from benzodiazepines.
If you need to stop a convulsion fast, benzos are more helpful than ‘anticonvulsants’. The anticonvulsants are used to prevent convulsions – they supposedly stop the kindling of an epileptic focus. This is a neurological action rather than a behavioral one. Bipolar Enthusiasts claim these drugs stop the kindling of bipolar episodes. This dangerous bit of biobabble has led to many people being kept on 5 or 6 anticonvulsants for life, if the first drug didn’t settle things down.
Biobabble always favors pumping people full of drugs rather than asking them about any anti-impulsive or other effects these drugs can have at low doses. Biobabblers seem unable to imagine that we might get the best results by telling someone taking these drugs what we hope will happen so they can look for it and then checking back with them whether it is happening and whether they find it helpful.
Antipsychotics
The antipsychotics barely feature in this list, which is odd because they clearly cause more motor problems than any other drugs but these are labelled dyskinesias and dystonias rather than dyspraxias.
If we throw the antipsychotics into the mix most of the drugs interfering with balance and coordination are drugs we imagine act in the brain.
Everyone knows the antipsychotics cause Parkinsonism. Could there be a more clear brain disease than Parkinson’s Disease?
It now looks like Parkinson’s and Alzheimer’s begin the gut, where proteins like alpha-synuclein misfold in gut nerves and become Lewy Bodies. Lewy Bodies get transported to the brain along the Vagus nerve. Finding Lewy Bodies in the brain makes a definitive diagnosis of Parkinson’s Disease. It now looks like cutting the Vagus nerve as it runs up through the body, or removing the Appendix, reduces the risk of Parkinson’s and Alzheimer’s.
Even before they show features of Parkinson’s Disease, most sufferers have long histories of gut problems – Guts and Parkinson’s Disease.
Just as fascinating, some people have been able to smell Parkinson’s on a partner’s skin a decade before the first motor or gut signs appear. This has been used to isolate the chemicals producing the smell in the hope it might help us understand how these conditions happen – Smell and Parkinson’s.
Many decades ago a patient told me his wife said his smell changed when he was put on an antipsychotic. These drugs are not antipsychotic in any meaningful sense. They were originally called neuroleptics – which means they impact on nerves. It now looks like it may be peripheral nerves on which they mostly act.
James and Lange
In the 1880s William James in Boston and Carl Lange (pictured) in Copenhagen independently proposed that our Emotions, our Selves, lie in our bodies. Rather than generating Emotions, our brains interpret signals arising from our bodies.
Our skin and gut continuum forms the boundary, where we encounter the world. Muscles, bones, hearts, lungs, nerves, livers etc are inside us. Our brains pay more heed to the input from our boundaries and from inside the boundary than they do to the external environment.
Things happening, like our heart rate speeding up, arouse us. The brain interprets these signals and often gets things wrong.
Our best known behavior shaping drugs act to fool our brains.
Benzodiazepines
Before the benzodiazepines, we used sedatives or stimulants to treat nerves. The sedatives worked by putting the brain out of action. Compared with the barbiturates, the benzodiazepines were not particularly sedative. They relaxed muscular tension. People were awake enough to tell us they were less anxious. The relaxation of tense muscles fools the brain into thinking we are not emotional, anxious, inhibited, or poised to escape.
Beta-Blockers
We use beta-blockers for anxiety based on the same thinking. Stop a heart racing, reduce perspiration, abolish the tremor people might see when you play the violin, eliminate the quaver in your voice and you can fool the brain into thinking there’s nothing much going on.
Serenics
What about the antidepressants? There is little serotonin in our brains and no brain abnormality they remedy. The SSRIs were made to produce a serenic (anxiolytic) effect and wouldn’t do this if there was anything wrong with the serotonin system. We now know they numb us, make us less reactive, more serene by dialing down key sensory inputs like vision and touch,
They may also make us more agitated at the same time by scrambling other sensory inputs, like balance – creating a complex chemical imbalance. The mismatch between visual and vestibular systems that seems to unbalance us and create shocking Zaps – outlined in Ondine’s Curse – look like a great example of the complex chemical imbalances these drugs can create.
As this slide sent by U.C. shows – Serenics also fool Brain Researchers. These images were taken after a single dose of escitalopram with the researchers concluding the SSRI had turned off pretty well the whole brain. It hasn’t. It has reduced input by numbing most senses, leaving the brain with little to process.
Neuroleptics
So-called antipsychotics get into brains but they correct nothing there. They reduce the bodily tension that leads to repetition when we are agitated, as in wringing our hands or pacing up and down – paradoxically risking the creation of complex imbalances that can give rise to agitation and restless pacing at the same time.
The anti-repetition effect can be clearly seen at very low doses in Tourette syndrome, where a tiny dose of neuroleptic can stop repeats. Increase the dose just a bit and all unnecessary action begins to stop, even smiling in response to someone. To do anything can feel like wading through treacle.
This is very like the effects of SSRIs – a low dose when needed numbs genitals and this stops premature ejaculation or orgasm. Continuous dosing stops all ejaculation and orgasm and libido plummets. Brains aren’t needed to explain this.
Neuroleptics inhibit the reflexes that link one movement to the next. These effects happen in everyone and were first described in laboratory animals in the 1950s.
An effect like this has nothing to do with a mental illness. The voices some of us may hear, or beliefs we may be over-invested in, remain but we literally don’t turn to them as we did before. Effects like this can paradoxically lead to delusional beliefs as people try to explain the things they are clearly experiencing – Symptoms or Side-Effects.
Rather than explain to people what we are hoping the drug will produce at the lowest possible dose and recruit them to helping us. we give people the impression that the drugs are working to fix something in some Strange Place they have no access to and only trained staff can assess if things are getting fixed or not.
It’s tempting to call this Strange Place the person’s Brain or Mind – but its clearly not. It’s a place cooked up in company marketing departments and in glossy images in books that has almost nothing to do with you or me.
When tics that can be seen or heard like repeatedly clearing our throat of blinking clear on a very low dose of the same neuroleptics, we don’t feel the need to invoke our Minds or even our Brains. If an itch clears on the drug we don’t think our Minds have more control over it now. If we don’t vomit on a neuroleptic when nauseated, we don’t think this is down to willpower.
Lithium
Carl Lange didn’t just propose a theory about our emotions. He was among the first to use Lithium for Manic-Depression. His idea was that manic-depression was linked to gout and excess uric acid. It was known since the 1850s that lithium helped in the excretion of uric acid and could be good for gout. The same appeared to hold true when Lange tried it out for manic-depression.
This idea partly came from lithium being put into spa waters (and later into 7-up) as a tonic for nerves. A crazy idea? Any crazier than the new ideas about Parkinson’s Disease?
What effect does lithium have on the brain? It can cause confusion. convulsions, toxicity and brain damage. Like valproate though, in low doses, it can introduce a pause between impulses and behavior. A gentler version of what neuroleptics do.
Reports on lithium to FDA show high levels of gait disturbance, dizziness, and discoordination. But we are never told about this. As Betty Blasko, writing over 30 years ago on The Myriad Medication Mistakes in Psychiatry – a Consumer’s View, put it, the first thing she knew about lithium discoordination was when she fell down the stairs.
We Won’t Get Fooled Again
Our brains get fooled but our muscles, guts, bladders, blood pressure, peripheral nerve endings and our Selves pay a serious price if we spend too much time thinking we are damping down our Strange Places (Minds) rather than our bodies.
Our credulity also pays a price, as these Ondine images illustrate.
When we get as badly fooled about what meds are doing as we have been, it becomes easier and easier to fool us again and again. We can be made to believe anything. We swallow hints antidepressants or antipsychotics are like guided missiles eliminating the infections that cause our mental illness just as antibiotics eliminate bacteria.
We become more likely to succumb to a fantasy and less likely to plump for the option that might be most conducive to our survival.
When our bodies were less cluttered with meds. we were often able to sense things that were not right like cancer. A good death was one when you knew a few hours or ideally days before that you were dying and had time to put your affairs in order.
In The Death of Ivan Illich, Tolstoy foresaw that modern medicine would cause us to lose the ability to read our bodies, which would lead to agonizing and undignified deaths. The Death of Ray Illich, in Shipwreck of the Singular, illustrates agonizing and undignified deaths that Tolstoy could not have imagined – drug induced self-impaling on a sharp knife – deaths that seem unremarkable now.
But even deaths like Ray Illich’s pale compared to what is coming our way. In an extraordinary recent account Last Step to Recovery Monique Timmermans tells about the death of her friend Anniek Lemmens. For Anniek, medically induced death was more appealing than living with the symptoms of protracted psychotropic drug withdrawal.
Anniek is not the only person. Last Year’s Visual Snow post featured A.V. a man who found Visual Snow and its linked problems so crippling he has applied for and been approved for Medical Assistance in Dying (MAiD).
Katinka Newman in a Daily Mail article this week outlines several cases where a failure to recognize the harms of benzodiazepines, antidepressants, other psychotropic drugs and in some cases antibiotics or other drugs – see 500 Drugs that Cause Akathisia and Suicide – trigger prescribing cascades that lead to detention in hospital, being pumped full of meds, and a final option to die rather than continue suffering.
People who read about cases like these in newspapers or hear about them – think how crazy is this. What is the world coming to when people opt to die because of an easily treated disorder like depression. They might even say they could respect a decision to die after the depression is cured.
Readers of newspapers or media watchers don’t realize that an increasing number of people – younger than Anniek – making these decisions have complex chemical imbalances for which there are no treatments. For which there is little hope of a spontaneous resolution. For which there is no research happening.
Worse again as Ondine’s Curse illustrates, our systems get in the way of any research because that would involve an admission that our treatments can cause PPPD, VSS, PWD, PSSD, PFS or PRSD.
Our Healthcare Systems have Gone Mad. Don’t blame the bureaucrat in this cartoon alone – the System is Us. We make it clear to the media they mention problems like these that might deter people from seeking treatment. It’s better if those affected opt for an actual death rather than endure a living death.
We don’t usually notice the Pharmaceutical companies behind all this who are more concerned for company health and wellbeing than for ours. For whom the best adverse event is a dead one.
Several posts on RxISK and DH cover this developing scenario – M.A.D. and Treatment Resistant Depression, MAiD in Canada – Treatment Resistant Depression, Medically Assisted Death in Canada and Tail Wags God – Technology and Morality.
The most recent is Cass or Cassandra: Doctors Bearing Gifts.
Rather than go quietly, another option might be a Hunger Strike outside the offices of the company whose drug has MAiD the problem
Illustration: Meds © created by Billiam James
annie says
An extract
https://www.madinamerica.com/2024/03/post-acute-withdrawal-syndrome-paws-how-the-last-step-to-recovery-became-the-final-step-in-life/
Would it have made any difference to you if you hadn’t had to fight so hard to find help for your symptoms?
Anniek: Yes indeed… People regularly talk about my euthanasia wish. But it’s not a wish. It’s an alternative to me doing it myself one unbearable day because, in the end, I can’t sustain this. Since I know I am going to die, I was more concerned with how to end my life properly than with wishing that I want my old life back. Recently when a spiritual caregiver asked how it came to be this way, I did feel that it would have made a huge difference if doctors had believed me and convincingly done their best for me. Now I wasted so much energy trying to convince them.
That is why I think it is very important to let people know that discontinuation complaints, as well as the patient, should be taken seriously.
It was never my intention to fight with my prescribers. In an ordinary conversation they didn’t seem to want to hear me. They kept going back to their guidelines with outdated information where there was hardly any room for understanding or compassion. But when a patient sits across from you and tells you how much discomfort she is experiencing, one might assume that she is not just saying that for fun. That such a specialist will then look for the reason why the symptoms deviate from the guideline and what can possibly be done about it? But because they always looked back in the file first, they could no longer look at it objectively. They kept attributing my symptoms to a non-objectifiable personality disorder which, according to the DSM, does not have to be permanent and which had been in remission for 10 years. The possibility that there was a connection with the medication was always blindly brushed aside because it could not be proven by me. It didn’t matter if I then came up with 6 research articles about the withdrawal syndrome and how it is often misinterpreted. I was a patient in the mental health system and apparently I lost my voice with that….
I never wanted to fight. For me it was important to learn from my case, not to damage psychiatrists. But if no one wants to listen, you easily lapse into fighting anyway. How else do you make yourself visible?
In 2020, Charlotte Bouwman held a sit-down event at the Ministry of Health. I too once thought, let me sit there. But I couldn’t do it in my state. I would be yanked from the Binnenhof like an overexcited crying heap of human beings.
I feel so disempowered. I have approached journalists for years, but somehow my story is not allowed to be told, it seems. That is why I am grateful that you are writing it up for Mad in the Netherlands. I really don’t want to vilify psychiatrists. I am well aware that my side of the story is only one side and that there are other sides as well. I do understand that. But since I have been ill, I feel like garbage. That does not apply to the people around me. They all stand beside me. They take my word for it. They just see how unbearable my life has become. But the doctors are all allowed to leave me to my fate, it seems. The very people who should have been able and willing to help me didn’t seem to care. At least it felt that way to me anyway.
What I find so terribly troublesome is that almost every doctor who did tell me that the damage was plausibly due to the pills did not write it down in my file so that the battle started all over again with the next person. For example, a specialist once told me that it was logical that I had symptoms because the medication was a kind of sedative filter, which suddenly taken away could cause overstimulation of the nervous system. That really felt like recognition. Unfortunately, that specialist didn’t write anything about it in my file so that the next time I visited another doctor, I had to start the battle that it was medication damage all over again.
I don’t understand why people could have treated me this way….
chris says
‘Reports on lithium to FDA show high levels of gait disturbance, dizziness, and discoordination. But we are never told about this. ‘
I would like to sue the psychs who told me it’s lithium or ECT for the horrific state I was in when it was actually akathisia caused by their actions and my naive trust and lack of knowledge. I went for lithium and have been dizzy and word fumbling ever since to boot a calcium deposit still some where inside me. Had an emergecy op to remove a kidney stone in fact two ops at the same time as akathisia which at the time was just about the worse time of my life only topped by the second bout of akathisia which happened whilst free of any drugs and went on for over six months – truly horrific. The only good thing I can say is that the dizziness has improved there are far more good days but if anything my finger word type fumbling is worse of late.
Ruth says
I Feel deeply saddened, I trusted my doctor.when they told me I had a chemical imbalance, I am annoyed at being so naive , I never had my brain tested so how could they say I had a chemical imbalance. I was conned and it has ruined my life 19 years of it , now I have a balance disorder and that affects everything in my life, took me 17 years to get a diagnosis and then I was told to take an SSRI to help with the symptoms!
You couldn’t make this up! The horrendous akathisia I suffered and GP couldn’t help, the various doctors who didn’t believe that my dizziness stemmed from stopping the drugs, Well I will never trust a doctor again now and that will probably be to my detriment.
Johanna says
This blog made me think of the problem that plagued Olympic gymnast Simone Biles during the 2021 Games: the Twisties. It’s something like a sudden blackout of proprioception, the sense of where your limbs and body are in space. When Biles withdrew from competition in the middle of the Games, the initial explanation was “anxiety” or “mental health challenges.” She was roundly criticized by some sports pundits as a spoiled little Snowflake, unwilling to endure a few days’ mental stress for Team USA. Then, at a press conference, she revealed she had been hit with a case of the Twisties.
The reporters were bewildered, but her fellow gymnasts understood at once: Oooh girl, I get you, they said — you did the right thing! In high-level gymnastics of the type Simone is known for, an attack of the Twisties in mid-air could get you seriously injured or even killed.
It’s clear that she’s not the only top gymnast who has had this problem. I wonder if it could in some cases be medication-related? Certainly any young Olympian having problems with anxiety these days would be likely to have an SSRI prescribed.
Then again, it can’t be exclusively a drug problem – it first emerged fifty or sixty years ago in pro baseball. They called it the Yips, and it ended the careers of a few ace pitchers who suddenly “forgot” the expert throwing motions that had become second nature after years of practice. This was long before SSRI’s, and it’s unlikely that elite pro athletes who lived by their reflexes would get Valium from the team doctor.
I’m sure their brains could have misinterpreted physical signals, like their hearts racing or their hair standing on end. But what would have triggered those responses in the first place? The idea of the high stakes in each pitch, and the disastrous consequences of a single slip-up, seems the most likely culprit. In other words, the brain, where images of the future are born. But maybe I’m not getting the whole picture.
Dr. David Healy says
Jo
Great comment. There are two elite athletes that come to my mind. Tiger Woods who ran into problems that seem likely to have led to meds and his coordination has never been the same since. In the UK a footballer called Wayne Rooney was extraordinarily gifted but began to lose his hair at a young age and had a hair transplant that almost certainly will have had Propecia added in and he lost his magic.
I’ve no doubt that these things can occur naturally – the guys listed in the Balance post having problems in the 1870s certainly didn’t have SSRIs or benzos but all elite performers athletes and musicians had access to alcohol for centuries. Before Wayne Rooney in UK football there was George Best who was destroyed by alcohol. Of course there is also the disturbing problem of Clint Eastwood who in Unforgiven was only coordinated when drinking.
The problem is not are these things always caused by drugs – they aren’t – but when faced with a person with the twisties or Yips etc who will naturally be anxious as a result, even if naturally caused it seems to be a bad mistake to assume the problem is anxiety based. Sure it leads to anxiety – and giving an anxiolytic might make sense from that point of view but anxiolytics that cause dizziness, loss of coordination, clumsiness and close to insisting you take these or I won’t treat you any longer is mind-blowing – or should that be body-blowing – if you ask me
See R’s comment. She feels very let down as I think almost anyone in her position would.
D
The problem is not
mary H. says
Can I just add something here regarding balance etc. I have suffered left ear hearing loss since early childhood, caused by recurring ear infections ( and possibly the drops regularly given to clear them!).
Hearing loss is just a tiny piece of my problems – all linked, and sounding remarkably similar to all the different issues here. I have never had an SSRI or any other medication apart from the antibiotics mentioned above and asthma preparations which came far later on in life.
Due to the type of inner ear damage that I, apparently, have, hearing aids are not suitable. I cannot use any type of headphone etc. as it increases the tinnitus to an intolerable level.
Balance is a massive problem for me – for example, I could not attempt to use stairs, up or down without there being a bannister to hold or lean against. Escalators in stores are extremely problematic as I seem to lose track of where I am or how to tackle the getting on/off . I was once stuck for half an hour at the top of an escalator and just could not safely step onto it. I eventually got down by standing very close to the person in front of me who supported my descent! Lifts are also problematic, I steer away from them as often as possible. What happens when the lift moves is unbelievable as it causes my vision to give me the sensation of being on a merry-go-round and again, I have to rest against the side of the cubicle – or fall over! I could never learn any type of dance routine – my whole concentration would have to be on actually being in a space where there was a need to follow others ( rather than being part of the movement). My natural posture ( as many photos show!) is for my head to lean slightly to the left. If I trip over anything then I fall, I cannot right myself as others seem to be able to do. If I walk and listen to someone with me at the same time, I tend to veer to the left.
There are so many other instances that I could add but my point is this – either my problems are simply part of me or were caused by the antibiotics given so often until my mid teens. it would be good to know which but would make no real difference to my life.
That SSRIs could well be responsible for the same kind of problems as I have always lived with is interesting. For those suffering – I hear you but try not to dwell on these ‘losses’ as I am proof of the fact that a ‘life’ is possible with just a few adjustments!
Dr. David Healy says
Mary
Thanks for this. My father had a hearing problem caused by Steptomycin – there are a bunch of antibiotics and other drugs that can cause Ototoxicity. He got on with life but it didn’t help his appreciation of music
David
mary H. says
Fully understand about the music – for me, more about songs. I haven’t a clue about the lyrics unless I can see the singer’s face close enough to read their lips!
Dr. David Healy says
Jo
Thanks for the Biles story. I can across this snippet about Alice Kinsella a British gymnast who had problems with her routines when she went on an oral contraceptive for acne. She became anxious and depressed which is well known but it also looks like either the meds or her new anxiety state caused something closer to the twisties.
https://www.bbc.com/sport/gymnastics/articles/ckken5k3kg2o
She almost retired until she stopped the meds and found she came back to normal and is now back competing at her previous level.
David
tim says
Thank you for another two fascinating posts on DH and RxISK Blogs this week.
I begin to regard these posts as my most valuable CME. (Continuing Medical Education).
When our Kidnapped Daughter’s ‘misdiagnosed’ SSRI induced akathisia evolved through a long series of
‘best guess diagnoses”: – ( Rather like the children’s game of ‘Pinning The Tail On The Donkey’) – her abductor’s last. fashionable guess was – “We think she has bipolar disorder”.
To this he added two phrases:
1) “I reserve the right to change that diagnosis at any time”.
2) “We’ve got to get her stabilised”.
This meant they felt that after many months of serial psychotropic drug poisoning for each new mislabelled ADR, and their iatrogenic cascade of injuries, (inflicted in an institution of abuse, cruelty and humiliation, which they alleged was a hospital) –
Valproate “Mood Stabilisation”, combined with risperidone was going to be therapeutic! .
What a fantasy!
This felt like capture by a malevolent cult that had nothing to do with medicine, or with care, and absolutely nothing to do with compassion. It appeared that those who kidnapped her had had an empathy gene deletion.
I could not believe that anyone who had graduated from medical school, and then achieved Specialist Accreditation could be diagnostically so incompetent and incontinent, and would use such dangerous drugs in such a cavalier manner, with such. contempt.
Now I learn that valproate moved from bread-spread to drug diluent used by I G Farben, thence to Anticonvulsant and to “Mood Stabiliser”.
Valproate. Full Prescribing Information.
WARNING: LIFE THREATENING COMPLICATIONS.
Even though she was comprehensively drug-wrecked by this stage, she and I saw the psychiatrist at one last visit before we returned home to a different UK country where we were living. My hopes of finding safe, sane psychiatry elsewhere had been a disaster.
Knowing that at last she was going home, she managed a hint of a smile at her abuser. His response was:
“I think we’ll increase the evening dose of valproate, you’re a little too happy”! He did not warn us of ‘Life Threatening Complications’.
The risperidone and valproate resulted in serious, apparently lifelong multi-system injuries.
Iatrogenic injuries that left her unable to study, to work or to socialise.
How many of those currently politically condemned, “economically inactive’ younger people are in that tragic situation not as a result of ‘Mental Illness’, but as a result of the abject failure of drug-dependent-psychiatrists and their misdiagnoses?
annie says
‘What a fantasy!’
When my laptop took a turn, I would call someone who raced around Argyll fixing problems.
I had done this for years and a few years ago, he turned up at my caravan and we both sat on the floor examining my laptop. We always chatted and I knew he was conversant with our previous medical practice. He had moved and so had I.
I knew he had a small son who was deaf.
So, I asked him, what did you think of Dr. ‘Cool’?
He immediately started tapping in to sites and pinned them to my browser.
That man did my family considerable damage, he said.
I left it at that.
When he left, I took a read of what he had pinned.
It seemed that this new doctor had a spectacular fall from grace in his new practice in Prince Edward Island. Some of the posts put up by residents were excoriating.
Through the surgery, I had passed on messages to this doctor.. He said in an email he would do everything he could to help with my Seroxat litigation. This led me, with confidence, to send him a bundle of stuff about his colleague. A part-time doctor who was more or less left to run his still-owned practice in Argyll.
I received a phone call at 7.00 am my time, his time 12.00 noon.
Hello, how are you, I said. How is Canada, how very nice of you to call.
He said, I am a very busy man and I haven’t got time to read the amount of papers you have sent to me. He was extremely hostile, and I said , thank you for calling and put the phone down.
When he came back to the UK, his PEI practice having failed, and he took up the reins of his ‘life-boat’ practice, it wasn’t long before he had his eyes on another practice. This was my new medical practice and there was an article in the local newspaper about how angry he was not to get it.
A group of doctors in a local small town got the new contract.
Our village and another close village, had a number of doctors who travelled up.
After a while the other village surgery, stopped running.
Currently all doctors at our village surgery have resigned.
An ad has been placed in the BMJ, it was said by the local health authority.
It would not surprise me in the least, if aforementioned doctor, went after this again.
We have had years of locums in the last twenty years in both practices.
Trying to sue a doctor, as I did, leads down a blind-alley –
We are such a small pawn in such a big game…
chris says
“Trying to sue a doctor, as I did, leads down a blind-alley –
We are such a small pawn in such a big game…”
I realised this during my complaint to the PHSO.
Put evidence by the health trusts own documents that anyone could understand within one minute as a lie re polypharmacy. I waited months for a reply and just gave up. In the mean time a lot of people have died or have their lives very badly affected as everyone on here well knows.
annie says
My complaint went to the SPSO (Scottish Public Services Ombudsman) in 2009.
They contacted the medical practice, they did not contact me.
Their letter closed their file on my complaint and notified the medical practice by sending them a copy of the letter sent to me.
Basically their long rambling letter said ‘which raise eligibility issues for us’.
And out of their box of tricks ‘and the Medical Practice will be unable to deal with any references you make to your action that you are pursuing against the Seroxat manufacturers.’
Yet, the Doctor himself had offered to help ‘we will do everything we can to help with your Seroxat case’.
After that little medley, in 2010, I received ‘a copy of the detailed expert medical report’, written by the assigned GP, from my Glasgow Solicitor.
‘the test for medical negligence is a high one’.
This Report was very long, and consists mainly of copies of notes from my medical records.
Page 16 – Her ‘Expert’ References:
What is Seroxat?
From Wikipedia 4.1 – 4.4
5.0 WHAT ARE THE PROBLEMS WITH SEROXAT WITHDRAWAL?
6.0 WHAT ARE THE POSSIBILITES TO REDUCE THE SEROXAT WITHDRAWAL EFFECTS?
From the Los Angeles Times
6.1 Regina Nuzzo, Los Angelese Times Staff Reporter, writes under the heading: Special Issue: Depression – Stopping Anti-Depressants Can Cause Side-Effects – Recognising Withdrawal Symptoms and Working with your Doctor are Key
6.2 Summary from my personal experienced
‘I was not aware of any particular problem with discontinuation symptoms’
6.3 ‘My practice was to advise patients to take the drug on alternate days for 2 weeks and then every third day for a further 2 weeks and then stop.’
‘I had not encountered anyone with severe withdrawal effects in my own practice.’
‘The appearance of the drug Citalopram which was mildly sedative but not as sedative as Seroxat really made Seroxat almost obsolete in my prescribing regimen’.
That was That. All 22 pages of it.
.
Her qualification sheet might have sounded impressive to her, but it bore no relation to ‘expert’ –
The Case was was on, with GlaxoSmithKline –
Any more ‘bad jokes’, up their sleeves…
Harriet Vogt says
Freya India’s great substack piece has just been re-published in the Spectator:
‘Maybe SSRIs saved your life, but that doesn’t mean they haven’t devastated the lives of others. And maybe you are asexual and have never taken antidepressants. But how dare you shut someone down who has? It’s so strange to me how progressives seem to reject any scepticism of the mental health industry now. We are a generation more medicalised than any other in history. We are a generation whose identities are more determined and inner lives more colonised by arbitrary diagnoses than ever before. Don’t we deserve answers?’
https://www.spectator.co.uk/article/are-antidepressants-making-you-asexual/
One of Gen Z’s most articulate voices describing the ALIENATION from psychological and bodily self that we all recognise, delivered by sleight of OPERATIONAL hand.
‘Bipolar’, as you say, is a classic ‘colonising’ diagnosis. ’Over 1 million people have bipolar. That’s roughly 30% more than the number of people who have dementia and twice the number of people who have schizophrenia’, says, Bipolar UK.
Just like the acespec pick ‘n mix sexual identity, it’s a mood confection. Disease mongering, and worse still, it detracts from the minority of people who are struggling with overwhelming states of being that were known as manic depression. No wonder those in desperate need in the UK, cannot get the help. How helpful that help is – is a moot point.
Have a look at the Bipolar UK Mood Scale https://www.bipolaruk.org/FAQs/track-your-mood-scale Quite honestly, leaving out the smoking, No 7 in the hypomania zone, looks like a good day to me – ‘Very productive, everything to excess (phone calls, writing, smoking , tea), charming and talkative.
Also worth trying the mood disorder questionnaire https://www.bipolaruk.org/diagnosing-bipolar#Take-our-mood-disorder-questionnaire. I was found wanting, ‘unlikely to have BP’, but could easily have played it. If you’re still hankering after having your identity colonised ,there’s an option to download a mood tracker- a second chance to win the diagnostic jackpot. https://www.bipolaruk.org/Blog/track-your-mood-app
Apparently the rate of suicide amongst those dx with ‘Bipolar’ is up to 10-30% higher than in the rest of then population. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6723289/
But, as usual, nobody seems to consider the role medication might play, despite being mentioned in the NHS info – ‘a small number of people taking sodium valproate have had suicidal thoughts.’ https://www.nhs.uk/medicines/sodium-valproate/
A further serious worry is that the glacially slow regulatory action on teratogenicity – will overshadow communication of the other dangers of valproate. In their correct concern about pregnancy prevention, will prescribers remember suicide and other risks? Viz no mention in the pregnancy prevention programme leaflet sponsored by – guess who? – Sanofi. https://www.medicines.org.uk/emc/rmm/1204/Document
annie says
Freya India is becoming a very influential figure, of her generation.
Last night on BBC R4, another side of Freya.
Freya is 24 years old.
Not directly tying-in with Harriet’s excellent comment; But, Freya, is indeed, someone to watch
https://twitter.com/freyaindiaa
Are young people refusing to grow up, or just enjoying harmless escapism?
https://www.bbc.co.uk/sounds/play/m001yj6g
This article is more than 24 years old
They said it was safe
https://www.theguardian.com/theguardian/1999/oct/30/weekend7.weekend1
Prozac is said to be safe. It is almost impossible to kill yourself with an overdose. That has been its biggest-selling pitch – Prozac is simple, legal and safe. GPs are handing it out to teenagers, even to young children, in increasing numbers.
But there is now a mound of evidence that, in a minority of cases, it induces a strange and disturbing state of mind that can lead to violence and suicide. This state of mind is a recognised psychiatric phenomenon, called akathisia.
During the trials, for instance, only 5% reported sexual problems – it is now known that half of those on the drug may experience changes in sexual functioning. And how are they supposed to report a side-effect, such as akathisia, that they’ve probably never heard of?
susanne says
Philosophy for our times
How medicine ignores our bodies
Physiology’s challenge to medicine
Speakers
Comments
We think the brain controls our behaviour and emotions. But antidepressants are changing this narrative. They numb both emotional and genital areas in the body within minutes of the first pill. Join outspoken psychopharmacologist David Healy as he argues the body, not the brain, is our behavioural and emotional centre.
The Speaker
David Healy is a renowned professor of psychiatry at Bangor University. He is a psychiatrist, psychopharmacologist, scientist and author known for criticising a lack of neutrality regarding psychotropic drugs.
See more big ideas like this discussed live at the Institute of Art and Ideas’ annual philosophy and music festival HowTheLightGetsIn. For more information and tickets, visit https://howthelightgetsin.org
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