Ondine’s Curse links closely to Balancing our Bodies and next week’s Juggling our Selves.
Ondine’s Curse sounds like a Greek Myths. Its not. The story began taking shape a few hundred years ago and has been elaborated ever since – ending up featuring in The Little Mermaid and other stories.
The standard version is that a faithless man is cursed by Ondine, a water-nymph, to die if he falls asleep. And he does. The Character Assassination of Ondine gives a great account of the variations on the story.
A real condition – Central Hypoventilation Syndrome – often called Ondine’s Curse, can lead to death on falling asleep. You might expect people who have this condition to be horribly anxious. They aren’t. Identifying physical problems is key to living with them.
Misidentifications, or forcing us to choose what ‘feels’ like the wrong option, are more likely to lead to frustration and neuroses.
Jeffrey Staab
As mentioned in Balancing Our Bodies and Our Selves, Jeff Staab from the Mayo Clinic is the person who put PPPD on the map.
I emailed Dr Staab about links between SSRIs and PPPD. He replied. The dizziness that happens on starting an SSRI does not trigger PPPD in his experience. The dizziness on stopping can trigger a first episode of PPPD. The dizziness on stopping an SSRI being used to successfully manage PPPD can also cause problems.
Somewhat like Panic Disorder and the descriptions of Agoraphobia 150 years ago, for Jeffrey the initial trigger is an intense and unexpected experience, which appears to lead to anxiety and avoidance.
In his hands, specialized Vestibular Rehabilitation can help as can CBT adapted for dizziness, and he uses SSRIs in many cases. He has not found benzodiazepines to be helpful.
Neurological Dizziness and FND
Timothy Hain a Chicago doctor runs a Dizziness, Imbalance and Hearing Disorders website that covers a huge amount of material on these issues. There are more ways to be dizzy than I ever imagined possible.
Although Tim is in the ‘PPPD is a psychiatric Functional Neurological Disorder (FND)’ camp – see Hain PPPD Page – this site is well worth exploring.
In general medical specialists, neurologists included, are not good on drug induced toxicity. Tim’s section on drug induced dizziness and balance problems is, in my opinion, the weakest spot on his site but this seems to me a collective neurological fault rather than his alone.
In my experience, just as people who became suicidal on Prozac 30 years ago were able to distinguish drug induced suicidality from depression triggered suicidality, so also folk I’ve met on SRIs or other psychotropic drugs are capable of distinguishing SRI and SRI withdrawal induced dizziness from the dizziness caused by other conditions like Migraine Variant Balance Disorder (MVBD).
Funny Walks
Part of what leads to conditions like PPPD or Visual Snow being viewed as Functional Neurological Disorders, in the sense of hysterical or conversion or somatizing or fake disorders, is not just complaints of being dizzy without an obvious lesion to explain it, or complaints of Visual Snow or other weird phenomena, usually called Entoptic Phenomena, without an obvious way to explain them.
The addition of odd behaviors is what clinches an FND diagnosis for many doctors. Odd behaviors like a funny gait. Ever since Shell Shock in World War I, funny gaits have been among the most common features that have led doctors to claim this is hysteria or a conversion disorder.
A group of researchers in Cardiff have been looking into PPPD and have taken what appears to me to be a more nuanced approach – Powell and Colleagues.
Looking at PPPD provoked by visual factors, they found that those affected have their sensitivity to lots of sensory input from senses other than vision also disturbed. This leads to more avoidance behaviors than might be predicted.
One of their insights is that what might appear to be a funny walk can be a compensation that someone has worked out for factors that the observer is just not aware of – and they are not put on in the sense of maladapted (neurotic in shrink speak).
They also hint at an older wisdom that most of us can have a weak spot. It may be our balance, visual, gut or other system. Disorders like PPPD can then take root when an unexpected, intense event impacts on us. There is probably some truth to this but we need to keep open the possibility that physical factors we cannot yet detect may weaken one of our systems – inflammatory reactions in the dendritic cells of our cornea may trigger some of the effects found in Visual Snow.
Two people may illustrate what can happen. I saw a remarkable man recently, an athlete who appeared to have clear damage from a vaccine. He has auto-immune reactions that affect his neurological system. A colleague looking at a video of him doing things around the house, which involved walking, wondered about FND. Why? Well he has a funny walk. If you knew the case well, you knew that the inflammation affected his hips also, one hip in particular, and attempting to compensate for this produced the oddity in his walk.
The other person is R who introduced RxISK to PPPD – see Balancing Our Bodies. I now know a year before R went on paroxetine in 1996, still seen as a perfectly normal woman, she was diagnosed with right vestibular hypofunction. Put on a lengthy waiting list for Vestibular Rehabilitation Therapy. she was given paroxetine to tide her over – creating 3 decades of problems.
Which brings us to electric zaps.
Electric Zaps
When a new, striking, unmissable and fairly clear cut phenomenon turns up in medicine, most of us expect researchers will pile in enthusiastically – a bit like gardening enthusiasts in this Verwey cartoon.
Heading toward 4 decades since they began happening, we still have no explanations for what people on or withdrawing from an SRI call Brain Zaps, Electric Zaps, Electric Head, Electric Shock Sensations and other things. It is not as though these are minor. They are unexpected, intense and shocking. Following Don Klein and Jeffrey Staab, you’d imagine these should be causing anxiety disorders.
They feel like they are happening in the brain. They aren’t. The sensory receptors in the scalp and its blood vessels as well as the skull and the meningeal lining in between it and the brain seems to be where Zaps strike. Turning your eyes or head to one side, causing a clash between the vestibular, visual and proprioceptive systems seems to be a trigger.
Not only do we not know what the mechanism is, there’s an acknowledged unwillingness to mention that anything is happening for fear it might suggest to people they could get hooked to antidepressants – the denial is as profound as the denial of PSSD. And because the problem is denied, decades later there is still no research happening on what the mechanisms underpinning Zaps (or PSSD) it might be.
Remarkably, putting in terms like Brain Zaps or Electric Zaps to FDA’s adverse event reporting systems or accessing FDA through RxISK brings up nothing. Switching to Electric shock sensations starts bringing up things but far less than might be expected. There are 7-8000 reports of which well over half come from serotonin reuptake inhibiting drugs (SRIs).
Benzodiazepines, anticonvulsants and antipsychotics also feature, although it gets harder to know in these cases whether the link is to these drugs in their own right or possibly to a co-prescribed or previously prescribed SRI.
Monoclonal antibodies feature too – see The Once and Future Immunity – along with other ‘biologicals’. Intriguingly, drugs like paracetamol – acetaminophen in the US – which, along other things, work on the serotonin system in a similar fashion to buspirone feature, as do SRI antihistamines like diphenhydramine.
There are fewer reports on monoclonals, biologicals and acetaminophen – paracetamol but the interest here lies in the possible perceptions of Drs Staab and Hain. We can semi-expect Drs. Staab and Hain may already or might soon concede that SRIs may trigger PPPD but their perception is that the original intense and unexpected stimulus is just that – out of the blue rather than triggered by a drug, in particular drugs that don’t seem to go anywhere near the brain.
Vincent van Gogh may have had Visual Snow Syndrome and PPPD can perhaps be traced back to the 1870s, long before we had these drugs, so there are clearly other triggers to these conditions than drugs. But we may need a new openness to the possibility that neurological syndromes like these may be triggered by the meds we take and are not psychosomatic. An openness to correspond to the openness we appear to embrace to the possibility that neurological conditions like Parkinson’s Disease begin in the gut – see next week’s Juggling Our Selves and Our Bodies.
In terms of Zaps, Annie Bevan has sent in Brain Zaps: an Underappreciated Symptom of Antidepressant Discontinuation. There are a few helpful articles that can be traced through this link – the journal screams and shouts that it would be a crime for me to post the PDFs here but it looks like you can get several and they are useful.
Consulting A.I., Bob Fiddaman sent the following:
Antidepressants: Can cause dizziness, drowsiness, and impaired coordination, which may affect eye movements.Antipsychotics: Can cause extrapyramidal symptoms, which may include abnormal eye movements and coordination problems.Antiepileptic Drugs: Can cause dizziness, ataxia (loss of coordination), and blurred vision, which may affect eye movements.Benzodiazepines: Can cause drowsiness, dizziness, and impaired coordination, potentially affecting eye movements.Muscle Relaxants: Drugs like cyclobenzaprine and baclofen, can cause drowsiness, dizziness, and impaired coordination.Antihistamines: OTC antihistamines – diphenhydramine (Benadryl) and promethazine, can cause drowsiness and blurred vision, which may impact eye movements.Sedative-Hypnotic Medications: Can cause drowsiness, dizziness, and impaired coordination.
Everyone with PPPD faces a tricky scenario. In many clinics you are told SSRIs are not just helpful for PPPD, they can cure it. The trouble is you can’t stop them or things may well be a great deal worse as R found. Difficult as R’s scenario has been and the many scenarios that feature in the comments after Balancing our Bodies, there are even more grim possibilities dealt with in Juggling Our Bodies next week.
Please RxISK Report your dizziness, imbalances, clumsiness and lack of co-ordination to us in as much detail as you can.
PPPD opens a window on rewriting a lot of important things about Our Selves if we dare look through it. Next week’s Juggling Selves and Bodies will add to the conversation.
Continued next week with Juggling Our Selves and Our Bodies.
annie says
“Since you went away, I’ve had to force my body to do things it should do automatically. I no longer see unless I order my eyes to see… I have to control five senses, thirty muscles, even my bones; it’s an exhausting stewardship. A moment of inattention, and I will forget to hear, to breathe… He died, they will say, because he got tired of breathing…”
On the medical level, the shifting definitions lead to inconsistency on what the medical condition is. As Nannapaneni et al point out, the name “Ondine’s Curse” has come to be used inconsistently for all sorts of conditions related to respiration. Not ideal for a medical term. They suggest that “this wide and nonspecific usage reflects a lack of awareness of the origins of this eponymous term.”
These days, the condition is typically known as Congenital Central Hypoventilation Syndrome (CCHS); however, the name “Ondine’s Curse” is still around in casual language, and is apparently here to stay.
“ If these patients get better with treatment, that is really what matters.”
The typical array of treatments advocated for PPPD, without any strong evidence of efficacy are all of the following:
Patient education
Vestibular rehabilitation
Psychoactive medication (e.g. SSRI, SNRI)
Psychotherapy
https://dizziness-and-balance.com/disorders/psych/rx.html
Funny Walks
‘One of their insights is that what might appear to be a funny walk can be a compensation that someone has worked out for factors that the observer is just not aware of – and they are not put on in the sense of maladapted (neurotic in shrink speak).’
Have you got the scrolls?
No, I always walk this way – Morecambe and Wise
Apparently, Billy Connelly was stopped in an airport lounge, by a doctor, who noticed his strange gait, and this then led to his Parkinson’s diagnosis
Electric Zaps
Some things you never forget,
Before the doctor who bought our Medical Practice zoomed off to Prince Edward Island to start another much larger, much more ‘modelled’ practice, by chance, I saw him. I told him about the ‘Brain-Zaps’. I could not believe my ears, he said, “Everyone who is depressed gets zaps”.
I wasn’t depressed, or anxious, but I really should have been.
This was long after the Seroxat cold-turkey, the two horrendous withdrawals, the hospitals, the crucifying maltreatment of his colleague, and all that transpired in-between when Seroxat almost curtailed my life. I didn’t tell him all about that because at that point I hadn’t meticulously read through my medical records. That all came a bit later.
R
‘Put on a lengthy waiting list for Vestibular Rehabilitation Therapy. she was given paroxetine to tide her over – creating 3 decades of problems.’
‘When a new, striking, unmissable and fairly clear cut phenomenon turns up in medicine, most of us expect researchers will pile in enthusiastically’ –
or, even, our doctors…
Bob Fiddaman says
When engrossed in a horror movie scene set in a dimly lit basement with a flickering light bulb, that erratic flicker mirrors the unsettling sensation of head zaps. Despite your mind functioning normally, there’s a disturbing interruption to the usual rhythm. Paired with the sudden jolt, ranging from minor to severe, these zaps resemble the sharp prod of a cattle prod, as detailed in my book, ‘The Evidence, However, is Clear, The Seroxat Scandal’. They present a significant risk, occurring unpredictably. For instance, experiencing a zap while holding a hot cup of tea can cause the entire body to convulse, akin to the sudden shiver one might experience (often referred to as ‘Someone just walked over my grave’).
Such occurrences warrant thorough investigation, especially for individuals in roles like piloting planes, driving buses, or any other profession that puts public safety at risk.
susanne says
I don’t know if it is still prescribed for pain but decades ago I was prescribed amitriptiline for pain relief . It doesn’t seem to be included on the list so maybe not. This was before I had even heard of ‘brain zaps’ so there was nothing influencing my reporting to a doctor that there was a feeling of electricity over my head. I was a bit scared. Nevertheless he smiled patronisingly gave no response and probably is still too arrogant to listen and learn which shut me up. There was no information or possibility of googling then so I was left with just having to shrug it off as one of the weird things bodies can do. It’s been a relief to find it is known even if not understood
The electric feeling was not deep in my head , not what i would think of as my brain,just specific high on the left side and on how I would describe top layer of my scalp. It happened for a short time after I stopped taking the drug because of the side effects which didn’t deal with pain anyway. I eventually had the serious operation I needed. .
From working with a great bolshie group of people again years ago I got to know some who had been recruited by a husband and wife team investigating Schizophrenia to travel up to N Wales for tests they were carrying out on balance and eye movement. The test involved balancing along a white line and also doing eye movements they requested. . Nobody was given any information or feedback – they made the group feel a but foolish but hoping to hear something interesting out of it. If anyone knows about this research and the names of the husband and wife I would be interested to follow up?
They may have been focused mainly on Autism through Lorna Wing and her late husband Dr John Wing
Dr. David Healy says
S
The description here of something that sounds more like an electric field than a zap is good to get
D
susanne says
i can bring back the sensation of the electricity over my brain in
the same way i can bring back smells It wasn’t a zap for me it was
more like a field of electricity which moved from the top left side of
scalp from back to front more like a spreading movement- a
field more than than a zap
susanne says
Johns Hopkins Medicine Apologies have lost the reference
I found this interesting because problems with eyes are very common after taking ADs I had seriously blurred vision -like looking through steam. the left eye was worse – it’s i still close that eye quite a lot – i do it to rest it but don’t know if that could be connected to hangovers from the AD years ago
Most feeling in the back and top of the head is transmitted to the brain by the two greater occipital nerves. There is one nerve on each side of the head. Emerging from between bones of the spine in the upper neck, the two greater occipital nerves make their way through muscles at the back of the head and into the scalp. They sometimes reach nearly as far forward as the forehead, but do not cover the face or the area near the ears; other nerves supply these regions.
Irritation of one of these nerves anywhere along its course can cause a shooting, zapping, electric, or tingling pain very similar to that of trigeminal neuralgia, only with symptoms on one side of the scalp rather than in the face. Sometimes the pain can also seem to shoot forward (radiate) toward one eye. In some patients the scalp becomes extremely sensitive to even the lightest touch, making washing the hair or lying on a pillow nearly impossible. In other patients there may be numbness in the affected area. The region where the nerves enter the scalp may be extremely tender.
Mr Justin Oxley says
I’ve been learning a bit about stabilometry this evening. Wouldn’t it be a useful exercise to record stabilometry parameters in those afflicted with PPPD ? They even immerse people in virtual reality environments which simulate supermarkets and other busy environments and record their stabilometry parameters. Listening to certain types of music can improve postural stability. I will read a bit more tomorrow as I’m tired now.
Anne-Marie says
I had electric zaps on seroxat if I missed a dose, was laye in taking due dose or when hungover from drinking on seroxat. I did have mild electric zaps withdrawing off citalopram but seroxat was worse. When I came off all medication completely my head did feel wobbly and again I had mild electric zaps that faded away over a year afterwards.
I have wondered a few possibilities one being that ssris increase nureons and electrial firing rate which on withdrawal changes this maube causing a problem like electrical zaps.
It’s interesting DH mentioning the eyes I never thought about the connection but he is right it does happen when you move your eyes. It happens so fast in milliseconds that it’s hard to pinpoint exactly where its coming from..
chris says
“I was a bit scared. Nevertheless he smiled patronisingly gave no response and probably is still too arrogant to listen and learn which shut me up”
This is also part of my memory and one of the reasons I will only contact a doctor usually via A&E if I feel I absolutely have to. Most of the hell I’ve been through has gone, just have tinnitus, this dizzynes and a not very good ability with words or typing. Oh yes and a constant fear of getting akathisia again which makes me constantly research stuff on the subject.
Marion Brown says
Sharing one of the refs (Christmas, 2005) about patient reports of ‘brain shivers’….
https://www.cambridge.org/core/services/aop-cambridge-core/content/view/642FBBAE131EAB792E474F02A4B2CCC0/S0955603600028208a.pdf/brain-shivers-from-chat-room-to-clinic.pdf
annie says
I think it was a couple of years ago, I looked up ‘Explosions in the head’.
The ‘brain-zaps’ had gone on for years and started after I stopped Seroxat.
It was thought at one time, I might have sleep apnoea. Wearing a machine for a night, I did not have sleep apnoea.
I looked this up because I was having ‘big-zaps’ several times a night and sometimes smaller zaps during the daytime. Initially the ‘brain-zaps’ only occurred during the day and not at night.
All I wanted to know was if these head explosions were dangerous.
This article was quite reassuring in some ways.
In other ways, it did not address ‘brain-zaps’, although the ‘explosion’ was a word I would use for a ‘brain-zap’.
Exploding Head Syndrome (EHS)
Exploding head syndrome (EHS) is a sleep disorder. Although it sounds painful, you feel no pain. You hear a loud noise or explosion in your head. The sound isn’t real or heard by others. It happens as you’re falling asleep or when waking up during the night. EHS is harmless and not a sign of another serious health condition. It usually doesn’t require treatment.
https://my.clevelandclinic.org/health/diseases/21907-exploding-head-syndrome-ehs
‘EHS is a parasomnia, which is an undesired event that happens while sleeping. It’s also called episodic cranial sensory shocks.’
Parasomnias & Disruptive Sleep Disorders
https://my.clevelandclinic.org/health/diseases/12133-parasomnias–disruptive-sleep-disorders
The above articles, could be a ‘red-herring’ for ‘drug-induced brain-zaps’.
I had ‘none of the above’ EHS ‘symptoms’.
“Once I decided to go cold turkey (after 19 months of dropping 0.5mg per week) that’s when the problems really started. I’d position myself in a foetal position when going to bed at night, preparing myself for the onslaught of head and body zaps that Seroxat causes when missing or stopping a dose.”
Forty Winks: Insomnia and Antidepressants
July 19, 2021 13 Comments
https://rxisk.org/forty-winks-insomnia-and-antidepressants/
‘ a horror movie scene set in a dimly lit basement’
‘Johnny’s in the basement mixin’ up the medicine’
‘prod of a cattle prod’
Best yet…
I think it was a couple of years ago, I looked up ‘Explosions in the head’.
The ‘brain-zaps’ had gone on for years and started after I stopped Seroxat.
It was thought at one time, I might have sleep apnoea. Wearing a machine for a night, I did not have sleep apnoea.
I looked this up because I was having ‘big-zaps’ several times a night and sometimes smaller zaps during the daytime. Initially the ‘brain-zaps’ only occurred during the day and not at night.
All I wanted to know was if these head explosions were dangerous.
This article was quite reassuring in some ways.
In other ways, it did not address ‘brain-zaps’, although the ‘explosion’ was a word I would use for a ‘brain-zap’.
Exploding Head Syndrome (EHS)
Exploding head syndrome (EHS) is a sleep disorder. Although it sounds painful, you feel no pain. You hear a loud noise or explosion in your head. The sound isn’t real or heard by others. It happens as you’re falling asleep or when waking up during the night. EHS is harmless and not a sign of another serious health condition. It usually doesn’t require treatment.
https://my.clevelandclinic.org/health/diseases/21907-exploding-head-syndrome-ehs
‘EHS is a parasomnia, which is an undesired event that happens while sleeping. It’s also called episodic cranial sensory shocks.’
Parasomnias & Disruptive Sleep Disorders
https://my.clevelandclinic.org/health/diseases/12133-parasomnias–disruptive-sleep-disorders
The above articles, could be a ‘red-herring’ for ‘drug-induced brain-zaps’.
I had ‘none of the above’ EHS ‘symptoms’.
“Once I decided to go cold turkey (after 19 months of dropping 0.5mg per week) that’s when the problems really started. I’d position myself in a foetal position when going to bed at night, preparing myself for the onslaught of head and body zaps that Seroxat causes when missing or stopping a dose.”
Forty Winks: Insomnia and Antidepressants
July 19, 2021 13 Comments
https://rxisk.org/forty-winks-insomnia-and-antidepressants/
‘ a horror movie scene set in a dimly lit basement’
‘Johnny’s in the basement mixin’ up the medicine’
‘prod of a cattle prod’
Best yet…
CU says
Trying to understand the article (and the previous one), I see there are mentioned two explanations for PPPD and dizziness, drowsiness and consequently anxiety: reduced or increased sensitivity to inputs from outside.
In other words. An unexpected event can be cause by lack of sensations, on the other hand, too intense event can be hypersensitivity.
Do I understand correctly? Because “frying nerve endings” hypothesis seems more consistent with impaired ability to sense.
And something on brain zaps. I don’t know why they are called “brain”. I was also feeling them in my hands…
annie says
Sounds familiar…
‘I started getting electric- shock feelings, and I didn’t sleep at all,’ she recalls. ‘My eyesight was blurry and my hearing was muffled. I had this strange feeling that I had left my body.’
‘My tinnitus was screaming in my ears — it felt like my whole body was a melting pot of hell.’
https://www.dailymail.co.uk/health/article-13336857/sectioned-tranquiliser-anxiety-triggered-frightening-psychosis-worst-ordeal-doctors.html
EXCLUSIVE I was sectioned after being given a tranquiliser for anxiety that triggered a frightening slide into psychosis. But the worst part of my ordeal was how doctors tried to cure me
By KATINKA BLACKFORD NEWMAN
23 April 2024
Emma Saunders, an actress and photographer, went to her father’s private GP in Chelsea with tinnitus in November 2020. ‘I’d woken up with a loud ringing in my ears — it was distressing because I’d not had anything like it before and didn’t know what was going on,’ she says.
‘I went privately because I expected the doctor to have contacts and to refer me to a specialist for tests.’
Instead, the GP prescribed a tranquilliser, lorazepam, telling Emma, then 34, it would calm her down and help her sleep.
‘The doctor obviously thought I was having a meltdown — he said he was going to give me something to take until the pandemic was over [the UK was then in a national lockdown] and life got back to normal,’ she says.
Emma believes the decision to take the medication changed the course of her life for the worse and she is still suffering now.
‘Over the next three years, I was sectioned and admitted to three psychiatric hospitals. I became psychotic and was in such unbearable physical and mental agony that I tried to kill myself several times.’
She adds: ‘Three-and-a-half years later I’m still unwell. I’ve got long-term nerve damage, have severe migraines and pain in my eyes and am often confined to my bed for weeks because I’m so unwell.’
Emma’s story began with a tranquilliser, but her worsening condition and long-term health problems are linked to the side-effects of the drug itself — but as is too often the case, these symptoms were seen as her condition worsening — rather than down to the drug itself, leading to more medication, triggering an agonising condition called akathisia.
This is a dangerous side-effect of some medications, mainly antipsychotics, but it can also occur with antidepressants and even some antibiotics.
Akathisia causes intense restlessness, an inability to keep still and a feeling of terror. It can drive patients to kill themselves.
Lorazepam is a benzodiazepine, a type of drug used to treat conditions such as anxiety, depression and insomnia.
‘The GP said it was completely safe and I could take it until the end of lockdown [which lasted, with periods of relaxation of the rules in between, for another six months],’ says Emma.
‘I thought nothing of it because he’s a doctor and I trusted him.’
In fact, under official guidelines, these drugs should be prescribed for no more than two to four weeks, and should not be used as first-line treatments for conditions such as anxiety — the guidelines also warn that being dependent on them is common between two to four weeks of taking them.
As David Healy, a former professor of psychiatry at the University of Wales who is an expert in the side-effects of psychiatric medication, explains: ‘These drugs can be useful for treating short-term anxiety, but in the longer term they can be lethal.
‘People can get hooked on them in just a week and withdrawal problems can be so severe that some people are unable to get off them, or do so with devastating consequences.’
I remember first coming across the problems these pills cause in the 1980s when I was a researcher working on the TV consumer programme That’s Life!
Benzodiazepine addiction was one of the campaigns championed by my then boss, Esther Rantzen. In the following decades, 117 UK GPs and 50 health authorities were sued by patients to recover damages for the harmful effects of dependence and withdrawal.
Yet despite such concerns and despite the official guidelines, nearly 1.5 million people in England alone take benzodiazepines.
Thousands more are on them for longer than as set out in official guidelines — 120,000 people were given continuous prescriptions for benzodiazepines between April 2015 and March 2018, according to the latest figures from the National Institute for Health and Care Excellence.
It’s not ‘simply’ that people are being put on — and then left on — these drugs inappropriately, there is a worrying lack of awareness among healthcare professionals about the side-effects. Emma began having problems with lorazepam after just a month of starting to take it.
‘It helped me to sleep at first, but then it began to have the opposite effect,’ she says.
‘I was waking up in the early hours in a state of terror. It got worse until it wasn’t just in the middle of the night, it was throughout the day, too.’
(A lesser concern was that it hadn’t helped her tinnitus either, more on that later.)
Professor Healy explains: ‘Lorazepam is a short-acting drug which means it may put you to sleep but, after a few hours, it will wash out of your system and you will wake up again.’
He says what Emma experienced sounds like ‘interdose’ withdrawal — ‘this happens when withdrawal symptoms emerge in between scheduled doses: the problem with benzodiazepines is that they can cause the things they treat, so when the drug wears off patients can get rebound anxiety or rebound insomnia’.
Emma asked her GP if she should continue taking the drug ‘and he said it was safe to carry on with it’, she recalls.
With Covid travel restrictions relaxed, Emma had gone to stay with her father in Spain.
‘I was in the glorious sunshine but I felt anxious all the time,’ she says. ‘I couldn’t eat, concentrate or do anything.’
Eight weeks after starting on lorazepam Emma saw a doctor in Spain who diagnosed what she now knows was interdose withdrawal as anxiety, and prescribed citalopram as well. This is a type of SSRI (selective serotonin reuptake inhibitor), a class of antidepressants that is widely prescribed.
Emma’s condition became worse, she recalls: ‘Within hours of taking it, I started having a feeling of constant terror, I was rocking back and forth in my bed and I was unable to sit still.’
Her inability to keep still is characteristic of akathisia.
Professor Healy explains: ‘This is an agonising disorder which is typically caused by antipsychotics, but can also be caused by antidepressants, benzodiazepines and some other medications, such as antiemetics [used to prevent nausea]; pregabalin [for epilepsy, anxiety and nerve pain]; antimalarials and even some antibiotics.
‘It tends to happen when people first go on the drug, come off or change dose. I’ve seen people who are pacing and screaming and banging their heads against walls because they are so distressed by it,’ says Professor Healy.
While the exact cause and the proportion of people taking medication who are affected by akathisia are not known, in a study Professor Healy ran in 2000, where 20 healthy people were given the SSRI sertraline, one in ten developed akathisia, reported the journal Primary Care Psychiatry.
Nicole Lamberson is the medical director of Benzodiazepine Information Coalition — a U.S. based support group of patients and medical professionals. She says they are contacted by sufferers from all over the world, including many in the UK.
‘We hear regularly that someone has taken their own life because the agony of akathisia and drug withdrawal was too much to bear,’ she says. With the permission of their families, Nicole has posted a video on YouTube of Christine Narloch, from Wisconsin, and Stephanie Eisensmith, from Florida, who both suffered akathisia after being taken off their prescription benzodiazepines too quickly. Both ended their lives because the agony was too much.
The videos are deeply distressing, showing the women unable to stop moving and crying.
They both asked for these videos to be made public to raise awareness.
Christine wrote to her family before she took her own life in 2017, aged 48: ‘I’ve suffered horrifically from the lorazepam prescribed by a doctor. Please know I tried to survive. Mikey [her husband] has a video to show you a tiny bit of what I went through.’
The videos have a particular poignancy for me as I, too, wanted to end my life due to akathisia. My ordeal began in 2012 when I went to a doctor with insomnia caused by a divorce. I wanted sleeping pills, but was prescribed antidepressant escitalopram, an SSRI.
I am one of the estimated 2 to 5 per cent of people who suffer a severe adverse reaction to antidepressants: I became acutely psychotic and was admitted to a private hospital, where doctors didn’t realise it was the antidepressant that had caused my psychosis.
They sectioned me, prescribing more antidepressants and anti-psychotics and, over the course of a year, I became nearly catatonic.
Almost as soon as I started on the original medication I developed acute akathisia — even now, 12 years later, I find it hard to relive the agony.
At times, the inability to sit still was so unbearable that I would wander the streets for hours.
Sometimes it was so agonising that I thought of jumping under a train. I also lived in a state of terror as if I was about to be attacked. My ordeal ended with my admission to a different hospital where I went cold turkey.
Since then I have been completely well and drug-free.
But throughout that year, not one medical professional recognised that my condition had been caused by drug-induced akathisia.
Instead, they thought my desire to kill myself and inability to stop moving was simply a mental health problem.
Having gone online and found support groups of people who were suffering from benzodiazepine and antidepressant withdrawal, Emma wondered if her medication might also be to blame for her symptoms — so a month after being put on citalopram, she started to reduce the dose. While her akathisia improved, she still wasn’t back to her usual self, suffering insomnia and ‘unnatural anxiety — I could barely leave my room’, she says.
Two months after coming off citalopram, Emma decided to stop taking the lorazepam, too, which she’d been on for five-and-a-half months. But this made her condition, including the akathisia, much worse.
‘I started getting electric- shock feelings, and I didn’t sleep at all,’ she recalls. ‘My eyesight was blurry and my hearing was muffled. I had this strange feeling that I had left my body.’
These are classic signs of antidepressant and benzodiazepine withdrawal, say experts.
Concerned, Emma’s father took her to a hospital.
She recalls: ‘I was strapped into a chair and taken up to this awful psychiatric unit — it was like a prison rather than a place where a doctor would send you to get better. I realised it was the medication that was making me ill and the last thing I wanted was any more drugs. But they made me take sertraline [another SSRI] and threatened to inject me with the antipsychotic olanzapine if I didn’t agree.
‘My tinnitus was screaming in my ears — it felt like my whole body was a melting pot of hell.’
After three days, Emma persuaded doctors to discharge her. But, still suffering, ‘I Googled how to kill myself — the awful thing is I didn’t want to die, I just wanted the suffering to stop’, she says.
In the summer of 2021, her mother flew over to take her home to the UK. Back in London, her condition worsened.
‘At this point I’m down to 5st —usually I’m 8st — I’m 5ft 4in,’ she says. ‘I’m pacing 24/7 in a circle and I still can’t sleep. My friend has taken a video of this; I’m in full psychosis. I thought I was dead, that I was in hell and that my mum was the Devil.’
Over the next four months, Emma was sectioned twice and put on more antidepressants and antipsychotics. Her physical and mental health declined as the akathisia and other withdrawal symptoms escalated and resulted in more attempts to take her life.
Her nightmare ended in November 2021, a year after it began, when a nurse gave her lorazepam, the same drug that had begun her ordeal — this time, to help with her agitation and constant pacing.
‘Suddenly, I felt OK,’ says Emma. ‘It was like a miracle. I was able to have a normal conversation.’
She saw a private psychiatrist who told her that she was suffering protracted withdrawal from the lorazepam, and he recommended she reinstate it and taper off it slowly, along with the other antidepressant and antipsychotic drugs she’d been prescribed.
Emma has been doing this for two-and-a-half years and has been told it will take several more to get off them completely.
‘The withdrawal symptoms are sometimes so bad that it feels as if I’m having seizures or a stroke — and sometimes the akathisia comes back,’ she says. She also still suffers from tinnitus — a specialist has diagnosed a problem with her Eustachian tube, probably caused by Covid, which she had during the first lockdown.
While I’m disturbed by Emma’s story, I’m not at all surprised.
After my own experience, I set up a campaigning website and I am frequently contacted by people like Emma, who have no history of mental illness but who also become suicidal from drugs such as antidepressants, antipsychotics and benzodiazepines.
Last week, I was contacted by a head teacher who developed akathisia and became suicidal immediately after taking citalopram for stress.
After a year, which included several attempts to end his life, he was lucky to meet a psychiatrist who correctly diagnosed that his condition had been caused by the drug and helped taper him off it.
Now recovered, he told me that he was so desperate he rang the Samaritans 15 times.
He believes he could have been saved a year of hell if it had raised the possibility that some medications can cause people to want to kill themselves and that he may be suffering akathisia. Emma, too, had contacted the Samaritans.
Prompted by their stories, I spoke to a number of experts about what could be done to address this problem — their suggestion was for medical professionals and helpline staff alike to ask people: ‘Have you become suicidal since going on, changing dose or coming off a drug that lists suicidal thoughts as a potential side-effect?’
When I contacted the Samaritans a spokesperson said: ‘Our listening volunteers are not medically trained clinicians and do not offer advice on prescription medication.
‘Discussions about treatment options, including any possible side-effects, must be had with a GP or other qualified healthcare professional.’
In Professor Healy’s view, while suicide prevention services cannot be expected to offer medical advice, ‘they could raise the possibility with callers that their problems may be caused by medication and that if there’s a risk, they should go back to their doctor or seek medical advice’.
This, he says, could save people taking their own lives ‘and prevent thousands from the agony caused by an adverse drug reaction’.
That’s why I am organising a petition to call for suicide prevention services to ask patients this key question.
Emma adds: ‘It’s crazy how these medicines can alter your state from being a very happy person to all of a sudden thinking about suicide all the time.
‘I didn’t actually want to die — I was just experiencing the side-effects of these drugs.’
Katinka Blackford Newman’s website can be found at antidepressantrisks.org
recovery&renewal
@recover2renew
GET SUICIDE PREVENTION SERVICES TO ASK CALLERS IF THEY ARE TAKING MEDS THAT CAUSE SUICIDE – Sign the Petition!
https://chng.it/VzKLNFww via @UKChange
https://www.change.org/p/get-suicide-prevention-services-to-ask-callers-if-they-are-taking-meds-that-cause-suicide?
chris says
How many thousands has this happened to over God knows how many years.
I looked at the comments many were sympathetic also looked bank at a piece Katinka wrote about her own akathisia some 9 or so years ago. The comments were not at all sympathetic, so there seems to be a shift regards the public.
If Emma has bruxism it may help her migraine to consider a small mouth splint and then all the activities that make her use the muscles above her eyebrows such as having a shower, sun light low in the sky and wind when out.
There are many more. You have to keep the muscles relaxed as much as possible. Hope that maybe of help.
Ruth Francis says
‘they could raise the possibility with callers that their problems may be caused by medication and that if there’s a risk, they should go back to their doctor or seek medical advice’.
I Went to my GP with Akathisia and she said she didn’t know how to help me! So then what?
Dr. David Healy says
Good point – we are thinking about a possible solution
D
robert fiddaman says
This is the problem. ‘We cannot give medical advice and we urge you to seek professional help via your healthcare provider’.
This often results in healthcare providers misdiagnosing and either increasing the dose or adding another pill to the mix.
Orgs such as MISSD also encounter this problem.
I’ve suggested print-offs in the past but because of the God complex many prescribers cannot accept that they’re wrong.
This is a subject that has always been watered down. No more diluting!
Big dilemma.
Harriet Vogt says
Think you’re absolutely right, Bob. Great idea – but quite a few real world complications to be overcome to make it work.
This is one of the best pieces I’ve read on akathisia. Not the speculative stuff on mechanisms, but the section on why is it is so often misdiagnosed from patient and clinician perspectives.
https://www.psychiatrypodcast.com/psychiatry-psychotherapy-podcast/episode-111-akathisia
The detail is in the paper. But the essence is that:
Most doctors have a narrow and uninformed view of which symptoms signify akathisia. In reality, despite guidance and classic tests, like the Barnes Akathisia Rating Scale (BARS), including ‘subjective’ symptoms like severe distress, their diagnostic focus is on ‘objective’ physical restlessness.
Any behaviour that seems mad is usually assumed to be mad, not a toxic reaction to ‘treatment’. Do not pass go, acquire an ‘agitated depression’ or ‘psychosis’ diagnosis and more drugs.
This is compounded by patient-person behaviours. Not everyone manifests physical restlessness, the main signifier for doctors. Some people (I’ve seen this) can control their urge to move for quite a long time, certainly sitting through a medical consult. ‘No, they haven’t got akathisia, because they can keep still’. AAARGH.
The next obstacle is the way in which patient-persons describe their emotional state. I can’t imagine many spout the diagnostic blueprint – ‘inner restlessness’. Far more likely, assuming they can speak at all, to describe their emotions in terms of anger, terror, ‘I’m losing my mind’, screaming and bashing holes in walls (seen that too) etc. Bingo – mad.
Bottom line – yes, medication history should be a major akathisia signifier – exactly right of Katinka to feature the key moments of initiation and dose change. But, the reality is a huge risk of clinician- patient miscommunication, misdiagnosis and mistreatment.
Suspect it would take a more detailed system wide campaign – more sophisticated differential diagnostic criteria for akathisia than the current simple-minded stuff. In fact, the MISSD brochure is pretty well perfect.
It would need to be disseminated across the NHS, suicide response organisations and patients, especially at key moments of initiation and dose change. Challenging . Not impossible. As MISSD have demonstrated. Respect.
annie says
Almost everywhere you go “talk to your doctor”…
It takes a specialist to withdraw carefully, if only the Royal Colleges and Pharmaceutical Companies would stop the block.
https://fiddaman.blogspot.com/2010/03/glaxos-new-cervarix-ad-talk-to-your.html
So the Samaritans and others receive the petition.
It would take a massive advertising campaign to ‘Stop the Block’.
We know who the main culprits are, who have set the progress made back decades –
Simon Wessely, Clare Gerada, Anthony David, Louis Appleby, Robert Howard, Wendy Burn –
This is just the UK.
‘Talk to your doctor’ has become synonymous to being chucked in the silo of heading in to the completely wrong direction.
If Samaritans receive the petition, they should know where to put it and surely ‘someone’ needs to talk to the Samaritans and explain why “talk to your doctor” can be a death sentence.
Maybe ‘someone’ should write to explain to Samaritans, why this petition is coming forth and why “talk to your doctor” is a huge excuse for Pharmaceutical Companies, NICE, MHRA, GMC, Etc.
If the Samaritans receive a Petition, they might ‘get the hump’ but a bit of ‘Pre-Warning’ might adjust the argument to acceptability –
‘Stop the Block’ could be something we all carry with us…
susanne says
Here the authors are saying specifically that drugs can cause a death. It is no secret by now yet Coroners themselves evade reporting that directly
Public Health Pract (Oxf). 2024 Jun; 7: 100491. Published online 2024 Mar 23. doi: 10.1016/j.puhip.2024.100491
PMCID: PMC11019265PMID: 38628605
Preventable suicides involving medicines: A systematic case series of coroners’ reports in England and Wales
G. Anthony,a J.K. Aronson,b R. Brittain,c C. Heneghan,b and G.C. Richardsb,⁎
…… this study aimed to systematically assess coroners’ PFD reports involving suicides in which a medicine caused or contributed to the death to identify lessons for suicide prevention.
Comment from Samaritans in repose to Coroners Reports
“It’s hugely concerning that these common themes (as detailed in the article) are consistently emerging and there’s no evidence to suggest this will improve without urgent, deliberate action.”
Samaritans need to step up themselves and collect real time data and evidence from people who contact them by asking if and what prescribed drugs are being used, what their experience of using them is. What the attitude of doctors and health workers has been . And of course whether they were made aware of the potential effects of suicide and homicide. It should be recorded not just be part of a sympathetic conversation Having this as part of the conversation could possibly change the mind of some one contemplating suicide , That is when they realise there is a known risk that the drugs are causing the desire to die or cause harm.
People need to bewarned – and to warn /inform prescribers about material published such as in –
Curr Neuropharmacol. 2017 Jul; 15(5): 789–798. Published online 2017 Jul. doi: 10.2174/1570159X14666161208153644
PMCID: PMC5771055PMID: 27928948
Revisiting Antipsychotic-induced Akathisia: Current Issues and Prospective Challenges
Haitham Salem,a,b Caesa Nagpal,b Teresa Pigott,b and Antonio Lucio Teixeiraa,b,*
There are loads of reports online of drugs which have been prescribed to deal with Akathisia only to make matters much worse =
The only non drug treatment suggested in the article is Vitamin B6 – which others who have self experimented with herbs and other alternatives may know something about?
8.4. Vitamin B6
Vitamin B6 serves as a cofactor in the metabolic reactions for synthesis of several neurotransmitter including dopamine, serotonin, and GABA. In two studies of patients with acute antipsychotic-induced akathisia, high doses of vitamin B6 daily for 5 days resulted in significant improvement of akathisia [98, 99]. The exact mechanism of action underlying the observed anti-akathisia effects reported remains unknown at this time.
chris says
Yep really important post in my virw. I read it a while back along with other papers on B6 and akathisia and used B6 P5P but not at very high dose – I took 25mg to 75mg also followed low glutamate diet. It effectively stopped the onset of tardive akathisia in me.
susanne says
Chris Great that it worked for you. Do you know anything about Hemp Tea? I bought some recently when feeling low and liked the slightly spaced out effect even though there is no cannabis in it. But increasing the amount was unpleasant , bit nauseous., its sold in bags on high street health shops or online When feeling down enough to think a booster of something would be a good idea , only strong coffee really, I used to think the thing was to boost my energy It seems the opposite works better , the tea has a mellowing effect.
chris says
Do you know anything about Hemp Tea?
Sorry susanne never tried and do not know anything. After what I’ve been through I stick to what I know will keep me level and it’s geared towards keeping GABA in good order. Have my ups and downs, good and bad days but on the whole I’ve been improving, but I’m not what I might call robust and normal in the sense I go on holiday or travel it would be too much and a risk.
annie says
Is there anything between their ears…
Andy, Ripley, Salman and, even, Baby Reindeer…
louis appleby
@ProfLAppleby
Just finished #Knife, Salman Rushdie’s extraordinary & humane account of surviving a near-fatal attack.
How do you recover after such profound trauma? Are you ever the same again?
Its all Birds and Films, with Louis.
https://twitter.com/ProfLAppleby
The best Ripley, the movie series, by far, is Andrew Scott
He said on CNN, the hard part was getting the ‘blankness’
The Blankness…
https://www.youtube.com/watch?v=LP6kPJXwAJo
“I am super-proud…
What does the future of health care look like? UnitedHealthcare Group CEO Andrew Witty on how his company is evolving the consumer experience by simplifying patient visits, streamlining payments, and advancing the digital health care experience.
https://www.youtube.com/watch?v=SaezBL0SJu4
Andrew is super-dynamic, he speaks in American, ‘quarterbacks’, he wears white jeans
Woah, Andy, where did your Seroxat go?
chris says
Take 2
Having been through such a horrific time and for years I tend not to try anything that could adversely affect me. For sometime now it’s been my view that raising GABA within what the body requires is the key at least for myself. Although I do not agree with everything Cynthia Perkins says on GABA I gained a lot from what she advocates.
Dr. David Healy says
Chris
One of the important things here is you mentioning the bit that helps you. I’ve no idea who Cynthia Perkins is and most readers won’t have either. If we knew more there might be some basis for saying X or Y might help a number of folk – just as hyperbolic tapering can – but at the moment there are very few things that work for most people.
Having said that it looks like there are a number of people that get helped by your P-5-P proposal – so this was great to get – but others seem to get wound up by it even at low doses.
On the outside looking in I see lots of folk who can get off 3 drugs no problem but not a 4th one – so its nothing to do with will-power – and the 4th one they can’t get off differs from person to person.
Getting off is a problem – putting people on stuff at the drop of a hat is the even bigger problem.
David
chris says
I fear you may disapprove
https://www.holistichelp.net/blog/how-to-increase-gaba-and-balance-glutamate/
“On the outside looking in I see lots of folk who can get off 3 drugs no problem but not a 4th one – so its nothing to do with will-power – and the 4th one they can’t get off differs from person to person.”
This was the case with myself as well – it was the benzo that caused me the problems.
Dr. David Healy says
Chris
I’m applauding your nailing down the benzos as the cause of your problem – I wouldn’t like anyone else to think CP is much or an authority on anything
D
chris says
https://curementalhealth.co.uk/family-calls-for-essex-mental-health-inquiry-to-include-mothers-death/
“He said her mental health went downhill after a doctor responded by changing her medication, and the type and dose changed frequently over the next few months.”
Everyone here knows what happened from the above.
“During that period of October to February, there was no one involved. The mental health team could have stepped in and said ‘OK, because you haven’t got a psychiatrist, we’ll resume the visits’. There was basically nothing – just a void.”
But what I find shocking isn’t that the ‘Enquiry’ doesn’t want to include this woman’s situation it’s that the people involved still think there is a “service” that is going to help anybody.
How do we reach people like this ?