Thanks to R who helped trigger this important RxISK post and some doctoring. .
In July 2023, RxISK ran a post, written by R, giving an account of her Persistent Postural Perceptual Dizziness. PPPD was new to us. R had been in regular contact for a decade because of protracted withdrawal problems. Her problems came back in waves that were difficult to manage. She was then diagnosed with PPPD, thought this might make sense of what was happening to her, and put it on our radar.
R was slow to write a post – she had never written anything like this before. But her post is remarkable. With over 70 comments, it clearly struck a chord. The mismatch between what R wrote and her view of her skills may play a part in the story below.
PPPD came into play again with our Visual Snow Syndrome (VSS) post 2 months later. Many people reporting Visual Snow also had balance and tinnitus problems.
In addition lots of folk reporting VSS and PPPD o us were reporting diagnoses of Functional Neurological Disorders (FND). In practice, while protesting this is not the case, FND means the medical system views these problems as psychogenic, psychosomatic, hysterical, somatizing, conversion disorder – take your pick. Something to be treated with an SSRI or with psychotherapy to look for buried trauma – the real cause of the problem. This is baloney.
The mismatch between R’s writing skill and her estimate of her skills, noted above, might shed some light on how systems can get away with baloney. She is introverted – that is she doubts herself, risk manages rather than risk takes, blames herself more than blames others (as extraverts do), thinks she has failed and is not matching up to the standards she aspires to. If you ask her does she get anxious or depressed she will say yes. Hers is not an anxiety or depressive disorder that needs treatment or will respond to treatment. This is her personality, her Self, her constitution.
We need her to be that way. As the Archipelago of Realities outlines, we are a species and a species needs variation, risk managers and risk takers (aka extraverts), and all sorts of other variation.
R, or anyone who has PPPD, will also be anxious for another good reason. When you have unpredictable balance problems, and this is tied to akathisia, as it often is, and when there are a host of other subtle pointers to the fact you can’t rely on your body the way you once could, any normal person would get anxious.
But acknowledging anxiety enables neurologists, neuro-otologists, ophthalmologists, or other health system folk to figure they know what is going on – you’ve got a mental problem and you need an SSRI or therapy.
Even when your PPPD or VSS clearly began with starting or stopping an SRI, health systems are now completely unbalanced about, and blind and deaf to, the possibility an SRI may have caused either of these problems.
This situation needs changing. Life is a tightrope walk – balance counts.
The Birth of PPPD
The term PPPD came into existence a decade ago in a 2015 article by Jeffrey Staab. Two years later it had its own diagnostic criteria. It became an accepted FDA coding term in 2017 – the year of the first report. There now are 18 reports:
- 2 in 2019
- 1 in 2021
- 6 in 2022
- 7 in 2023
- 1 already in 2024 (FDA lag by 3 months)
These 18 reports come from 9 people reporting on 26 drugs; 3 for duloxetine, 3 sertraline, 3 venlafaxine, 1 amitriptyline and 1 nortriptyline. Half of those reporting PPPD are on a serotonin reuptake inhibiting (SRI) drug. The next most common drug group are benzodiazepines.
If you check the FDA database for reports of dizziness, balance, tinnitus, the picture is somewhat different. Except for tinnitus, where duloxetine is the commonest drug, SRIs are not the commonest drug but they come in as the second most common if you bundle them together, with benzodiazepines not far behind.
In conditions like dizziness, SRI effects get hidden by the cardiovascular effects of drugs designed to lower blood pressure. A drop in blood pressure when you change posture can lead to faints, which are often reported as dizziness.
SRI dizziness differs from blood pressure meds dizziness. PPPD may help tease these apart.
What the FDA figures don’t tell us is that dizziness is among the commonest effects on starting on SRI and is the commonest problem healthy volunteers experience on stopping them after only two weeks exposure.
A Functional Disorder?
Staab is a psychiatrist but says PPPD is not a psychiatric condition. The PPPD criteria classify it as “.. A chronic functional vestibular disorder. It is not a structural or psychiatric condition.”
Functional means nothing shows up on tests to explain the problem – making a default to anxiety all too easy.
While PPPD has only just come into being, Staab tracks its history back to the 1870s, when 3 different German doctors described people getting anxious or agitated in market-places. The criteria and history can be found in this link.
Two of these three doctors leaned toward anxiety about people or places as the cause, one suggested it was something to do with visual stimuli. The condition, ultimately, got called agoraphobia – a fear of the market-place. Agoraphobia has an acute anxiety core that leads to avoidance behaviour. Behaviour therapists later managed agoraphobia by blocking avoidance behaviours. This was not trauma related therapy.
Agoraphobia, a common diagnosis up to 1980, got swept away by Don Klein’s Panic Disorder. Klein said the avoidance behaviours are an after-effect. The core problem is an acute, severe I’m-going-to-die anxiety, which he linked to a suffocation alarm system in our carotid bodies. Panic disorder has since gone the same way as agoraphobia. The triggering stimulus has not been located and the focus has switched to managing avoidant behaviours with cognitive behaviour therapy not trauma related therapy.
Balancing Our Selves
Find yourself a window or place that looks out at foliage or vegetation that sways in the wind. Practice squatting or balancing on one leg until you can hold the posture for a minute or two.
While squatting or one-legging, focus on something swaying in the wind outside, you’ll find you lose your balance. If you close your eyes completely, you will do even worse. You will do best if you focus on something unmoving like a lamppost or window frame.
Just like the people in the marketplace in the 1870s, the more visual input the more likely you are to get dizzy and lose your balance. To this day people with PPPD have trouble with supermarkets, busy roads and flickering screens.
While squatting or one-legging slowly breathe in deeply – abdominally – deep slow breathing is usually linked to relaxation. You’ll lose your balance. You’ll do better taking breaths so shallow it might feel like you couldn’t be getting any oxygen at all.
While squatting or one-legging let your mind wander onto something emotional. You’ll lose balance.
Balance is an extraordinary and delicate skill well-known to require input from our eyes and the vestibules of our inner ears. It also requires proprioception which is less well-known.
Proprioception senses where our body and its various bits are in space. It needs a huge network of receptors in our joints, bones, muscles, skin and almost everything, linked by nerve fibres. These receptors and nerve fibres have serotonin, dopamine and other transmitter input. We have been conditioned to think these neurotransmitters act in the brain, but our brains have comparatively little serotonin.
Squatting makes it easy to appreciate the impact of something moving in our visual focus on our balance and to appreciate how altering the position of our muscles just by breathing more deeply impacts on our balance.
Emotions have weight and occupy a real place in real space. We call it body language or non-verbal communication. ‘Imagining’ an emotional scene primes our muscles to act – changes their tension and positions. Others can see our emotions in our expressions and postures or hear them in our voice and tell us about feelings we might not be aware of.
Squatting also reveals one more thing to people who aren’t used to it. We normally think that when sitting or standing or lying even, nothing much is happening in our bodies. Squatting, where your thighs are pressed down on your calves, makes you aware that this is not the case. Your muscles are moving intensely and continuously to maintain your balance and its all being organized locally – nobody is checking with some boss up above.
Our Bodies are Our Selves. The weight and position of our emotions can knock us off balance. A large part of our Mind, the boss up above, in contrast is put there by social forces which often reflect commercial or political interests rather than what might be good for Us.
Our Serotonin Our Selves
Drugs acting on the serotonin system cannot but impact significantly on our balance and coordination. Dizziness is one of the commonest ‘side-effects’ on starting an SSRI or benzodiazepine. It is the commonest side effect in healthy volunteers stopping after a two week exposure. And very common in patients dependent on benzodiazepines or SRIs.
After dizziness, healthy volunteers on SRIs have ‘anxiety’ and ‘depressive’ symptoms on stopping. These are not brain complaints. Brains don’t feel. Calling what is happening anxiety reflects the brain’s efforts to interpret scrambled discombobulated input from our bodies, from our selves.
Our brains monitor our bodily functions. Many of the key tasks are pretty basic. They tell us when we need to defecate or micturate. They are much more focused on working out what is going on inside our selves rather than outside in the environment. This can lead to mix-ups such as being sure we need to go to the bathroom just before we are about to deliver a lecture.
When people stop an SRI and become anxious or depressed, health staff see a return of prior conditions and claim we need to go back on our meds for life – to stabilize the chemical imbalance in our brains. Staff don’t realize these features of withdrawal reflect discombobulated proprioceptive and other sensory systems. The dizziness opens a window on what is happening.
It opens another window on Our Selves as well.
The most obvious way to explain the genital numbing that leads on to muted orgasm and loss of libido in people on SSRIs is that these drugs suppress sensing. Besides proprioception, touch, vision and other senses are muted as well. We say we are emotionally numbed on treatment but it is the sensory muting the drugs cause that leads us to say this.
This numbing, delivered to a lesser extent by using a lower dose of an SRI than is usually given, is what treatment aims at. It suits introverts more than extraverts. There is nothing wrong in the serotonin system that these drugs are putting right. Use too high a dose for too long and we end up with a complex chemical imbalance.
At the moment, we do not know how to remedy these complex chemical imbalances. They may involve damage to the endings of the small nerve fibres that constitute our sensory systems, Our Antennae, a key part of Our Selves.
SRI effects are not subtle things that it takes lots of training to be able to spot. Two decades ago, we gave a low dose SSRI or non-SSRI to mental health staff, acting as healthy volunteers in a fascinating blinded study to find out what these drugs really do.
Within a few hours of staff taking their first pill, patients on the ward who knew nothing about the experiment, nor who was on or not on meds, were able to tell us which of their doctors or nurses were on stuff – especially the SSRI. See Let Them Eat Prozac. No doctor or nurse would be able to do the same the other way around unless the patient was on unmissably disabling amounts of drugs.
The patients on the ward are better observers, better scientists, than the trained staff treating them. The system doesn’t encourage staff observations. Nor does it mobilize the skills or power of the powerless. The focus is on holding onto power rather than on sharing knowledge.
Once you jettison the standard narrative that these drugs take weeks to work, their effects can be as obvious as being able to tell if someone has had Botox.
In a series of posts RxISK has pointed to the need to mobilize the power of the powerless. Scientific progress depends on it – Good Experts Needed — The Creation Narrative — Experts by Experience.
Rather than recognize and work with the skills of those we are trying to treat, the current fashion for FND risks infantilizing people as well as being disastrous where it mandates giving an SRI to someone whose problems have been caused by an SRI.
Drug Induced PPPD
There are clearly cases of PPPD that, whatever the trigger (likely a physical one more often than we think), have nothing to do with an SRI.
Equally clearly SRIs can cause something very PPPD like. We need some new diagnostic categories
- PPPD: SRI variety.
- PPPD: Antipsychotic variety, given dopamine’s extensive proprioceptive input.
- PPPD: Benzodiazepine variety – the overlap with SRIs needs teasing out.
- PPPD: Anticonvulsant variety – see Coordinating Selves and Bodies next week.
These PPPDs will have no demonstrable lesions and in this sense the word functional may be appropriate, if it can be rescued from the harmful overlay it now has.
Whatever drug you are on, if you think you might have PPPD – see website below for criteria – please RxISK Report your dizziness, imbalances, clumsiness and lack of co-ordination to us in as much detail as you can. Even if you mentioned dizziness etc in prior reports, can you report again focusing in on these effects.
Exploring treatment induced PPPDs may shed light on akathisia a lethal ‘emotional’ effect these drugs have. RxISK has had many reports of dizziness. Up till this, like others we have seen dizziness as harmless. Looking back through our reports now, in a surprising number of cases dizziness has coincided with suicidal agitation. Dizziness looks like a marker for malignancy and perhaps a door to finally working out how akathisia happens and how to manage it.
We need to broaden our concept of balance to include coordination. Anything affecting balance will make us clumsy. Skills we might have had at playing a musical instrument or a sport like golf are going to be compromised.
Every time I hear of a high level performer – musician, golfer, footballer – who cannot get back to a prior level of performance after a depression or drug treatment for hair loss, I wonder about their treatment. We all, not just elite performers, need to be warned about these risks on starting treatment.
Our new clumsiness likely causes the brain fog so many complain about – Brain Fog. When our dexterity is compromised, we have to attend more closely to things that came automatically before. Attention is hard work, can make things worse and can never fully bridge the gap to an established skill. There is a reason we talk about muscle memory.
SRIs, antipsychotics and anticonvulsants need avoiding in cases where they may have triggered PPPD. In other cases involving balance, or coordination problems, they need to be at least carefully monitored – and we need to be warned about symptoms on stopping (SoS).
Our Brain Bias
This famous image comes from Descartes. It crystallized a form of Dualism that infects almost all of us to this day. Explaining how reflex actions are invariably wise, Descartes said the ghost in our machinery has an image of flames and so ‘knows’ to withdraw our finger or toe from a flame. The wisdom is in our mind not our toe.
He called these wise and instant movements a reflex, claiming the actions clearly involved reflection (thinking) that gives rise to invariably wise judgements.
Wisdom that is more often right than wrong is a feature of bodily evolution – not of brains.
It took 200 years to show how wrong Descartes was. Most of our wise behaviour has no mental, ghostly or even brain input. The discovery of reflexes, as now understand them – automatic behavior, led Sherrington to correct Descartes image. In the decades that followed we recognized that more and more of our behaviour is organized at lower and lower unconscious levels.
Thomas Huxley famously said, consciousness is like the steam-whistle on the then new rail locomotives – almost irrelevant. But our bias hasn’t followed the Science.
When we interpret our problems on or after these drugs as Brain Fog and when staff interpret our problems as a return of our previous illness and evidence we need to go back on treatment – we and they are making Descartes mistake and are failing to embrace the latest nearly 200 year old research on reflexes.
Part of what gets in the way is great company marketing, great social programming which accesses our brains and tells us that antidepressants act on our brains – leaving us thinking any problems we are left with must mean brain damage.
While giving any psychotropic drug may add to PPPD problems, cognitive or behaviour therapy may help. It can certainly help us avoid the avoidances that can make things worse. But the core of CBT or BT input in these cases must recognize that drug-induced PPPD is a physical disorder, that has likely happened in a normally resilient person whose input needs to guide therapy.
We need to accept we know less about the core problem than the affected person. We stand to make more progress if we pay heed to what they tell us no matter how odd, than if we claim an unwarranted expertise.
A series of RxISK posts Riding a bike backwards and Riding a Backwards Bike may help convey what is needed.
There is a version of Functional Neurological Disorders that attempts to account for PPPD like conditions in terms of systems that are out of whack with brain predictions. We need, it says, to get the brain predicting right again.
This is more appealing that talking about hysteria but also falls into the Descartes trap. Brains can never predict quickly enough what is needed in riding a backwards bike or returning a 150 mph serve in tennis or a throw by a professional baseball pitcher. We manage these things by feel and practice till things feel right – we do not model what’s going on cognitively.
Brain’s don’t predict but, guided by mistakes our bodies register, they can learn, and adapt for instance to different skill levels depending on the time of day – adapt to the dictates of the our bodies.
Ondine’s Curse
People with Ondine’s Curse die if they fall asleep. See Marilyn’s Curse.
You might expect them to be horribly anxious. They aren’t. Identifying physical problems can help us live with them.
Misidentifications, or forcing us to choose what ‘feels’ like the wrong option, are more likely to lead to frustration and neuroses.
Neurological Footnote
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 an FND’ camp – see Hain PPPD Page – his 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 the weakest one – 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 many 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).
As above, 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. A related post next week on coordination will add to the conversation.
Jeffrey Staab
I emailed Dr Staab about links between SSRIs and PPPD. 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 be a problem.
Somewhat like Panic Disorder and the descriptions of Agoraphobia 150 years ago, the initial trigger is an intense and unexpected experience.
Specialized Vestibular Rehabilitation can help as can CBT adapted for dizziness.
Continued next week with: Juggling Our Selves and Our Bodies. There will also be a new Ondine’s Curse Section
chris says
Suspect I have every single variety mentioned and it gets worse depending where I am, certain shopping areas aways affect me whilst others do not. I’ve thought about why this is – could it be the lay out of the architecture, the movement from inside to outside, outside to undercover, change in design of the floor and the feel of the floor under foot. Sometimes it can be worse than other times and I need to find somewhere to sit down quick or get back home ala pronto. I managed to go to London recenty to visit an exhibtion and struggled with the train moving over from side to side going round bends but got past it. I do not have any problems driving though. Have never really brought it up with anyone being as in comparison to akathisia it is a minor issue apart from the tinnitus which can be a problem.
Dr. David Healy says
C
There will be more next week. Would be good to get your thoughts and those of others when you all have time to explore and digest
D
Mike says
I have a similar problem with the Luas tram in Dublin on the days I’m standing up holding onto something to keep my balance when the tram is moving around corners I find it very difficult to keep my balance I get a feeling like I’m falling. This doesn’t happen if I’m lucky to enough get a seat if it’s not a busy day in the city.
Mr Justin Oxley says
Dizziness aka PPPD is my main symptom that I’m having to endure at the moment. Thankfully the severity of the Neck Pain(the NP problem) is much reduced but I still rest my Neck on Foam Rollers(NFRs), Plastic Spiky Balls(PSBs)and when the mood is appropriate my Vulken Acusphere (VA) as endorsed by Spock from Star Trek. The symptoms seem to shift around like the bits in a shift register only all this shifting about happens very slowly. In April the dizziness moved into the number one position and I hope it’s not going to remain there as long as a Bryan Adams song from the 1980s. It is unrealistic to expect everything I do personally to be soley for the benefit of one somebody else, I dont understand how that idea works. I’m preoccupied with my own thoughts, happily self contained/absorbed. I am antisocial now.
The dizziness is a preferable symptom to some of the others which have come along to occupy the top position in my past and I am pleased I can remain in my bed where I feel comfortable. The dizziness has put me off walking very far, walking a long distance in my condition doesn’t feel fun at all it feels positively treacherous. I’m hoping I can get rid of the dizziness by June as I want to get back outside and exercising this summer.
I am now somewhat clumsy in so far as I burnt my nose when trying to use my soldering iron to fix my glasses a week ago(the right bifocal lens is held in place by the frame, sometimes the solder joint next to the right arm hinge fails and the frame springs open which causes the lens to fall out). I also find that I have to concentrate harder than someone who works as an air traffic controller to keep track of where items are when I prepare my meals. It’s alot like the thing that happens when you go downstairs to get something and when you get there you cannot remember what it was only it’s happening over a much shorter period and all the time. Each time I try to make my breakfast or lunch it feels like my cache memory is being erased which causes me to have to fetch instructions from the main memory which is inefficient. For example I unintentionally scattered a mixture of leafy salads, sliced onions, tomatoes and peppers around my kitchen floor the other day after my grip on the plate I was holding failed to live up to my expectations.
I anticipated that I would see an increase in the frequency of my kitchen related accidents some years ago so I bought myself a set of bamboo plates and cups. This means that if I happen to send plates skyward in my kitchen I don’t have to spend ages crawling around on my hands and knees with my 5x led magnifying glass scouring the floor to find an unknown number of tiny pieces of broken porcelain.
I have quite alot of tools and used to have no trouble doing my own home diy but currently I have clumsiness and low stamina so it’s difficult to fix stuff in the way that I used to, my cache problem makes using tools hazardous to begin with. There are things in and around my house which I would like to repair/replace but my muscles ache and I don’t have the energy.
The palms of my hands are still red, they have a sort of dry electrical feeling now a bit like what Emperor Palpatine would have. I have found that rubbing ezcema/psoriasis cream into my palms, up my arms and over my neck helps relieve the dry electrical charge feeling a bit, I have not tried tethering myself to an earthing rod in my back garden yet. I have a red itchy rash on my inner thighs which has a well defined coastline with no fjords, eurax cream helps to stop the itching.
I was thinking about augmented reality over the weekend I don’t think it would help me with my nerves in large supermarkets. I tend to visit my local Coop which is small and I visit at times when it isn’t busy. I have previously found I get a spiral of agitation when I am held in a queue at the Coop I could reset this spiral by squeezing on my small 5cm spiky ball. Currently I don’t get the uncomfortable spiralling but I am quite dizzy.
I thought the following clip illustrates the dread I have about being in busy places it’s made worse by hyperstimulation and product decision paralysis. When compared to enduring the akathisia experince coping with this is a doddle be careful watching this as it might make you feel bad.
https://youtu.be/YJg02ivYzSs?si=7tnlVK0m-vxH_pK6
Anne-Marie says
I had terrible sinusitis and yawning on Seroxat. I also had a continuous whooshing sound in my ears and eventually had a very bad vertigo attack and was so clumsy I couldn’t walk, i was falling all over the place when walking. My legs and arms felt floppy and heavy. I went to bed and ended up being unable to get my head off the pillow as I felt my head spinning so much I wanted to be sick. It felt like I’d had a stroke.
I eventually called a gp out who gave me stemitil for dizziness. After about two days I felt a bit better I eventually went to see my own gp he was quite concerned and I’m sure I had to have some blood tests done and he prescribed me stemitil again just in case it happened again and told me to make an appointment to see him immediately if it happened again. Thankfully it didn’t but I still had a constant sinus problem which resolved when I came off seroxat. I didn’t have that on citalopram or mirtazapine.
Your post is a really brilliant post your very detailed in exactly what can happen on the tablets.
Mr Justin Oxley says
I can relate to what you describe as well, I have this compulsion to do things everything as quickly as possible at the moment which doesn’t make sense. It’s like it’s impossible to fully relax and get into the normal flow of thinking and acting. Its like I have to rush to get my breakfast ready and afterwards have a lie down whilst eating.
Anne-Marie says
I forgot to add I also had terrible bruxism while asleep on seroxat which felt like it was affecting my ears. I felt it was all connected with the whooshing sounds and ear pain.
Mr Justin Oxley says
I bought a mouldable teeth guard but I’ve not tried to use it yet. I’ve had some teeth at the back upper jaw crumble but I don’t feel up to going to the dentist right now. I had my upper front tooth to the left of my two front teeth just break off as I ate my lunch a couple of weeks back. I was just eating my wrap I have for lunch it’s not as if I was trying to chew a tough piece of meat. I’m taking it easy today again.
Anne-Marie says
I had the same thing my teeth crumbled away and I had loads of dental work. I used to have lovely teeth until I went onto SSRIS.
It’s because SSRIS driy your mouth and you have little saliva. Saliva is ivery mportant for the health of your teeth.
Chew gum if you can it will help to produce saliva.
When I came off SSRIS it was like someone had switched the sprinklers back on. I had so much saliva I was choking on it as I wasn’t used to having that much lol.
annie says
“Whooshing in the head” wrote the doctor.
Inside of my head, it felt like a a huge mass was lurching from side to side. Not fast, not slow, like the pendulum, of a clock, back and forth, forth and back. I had stopped Seroxat for the first time by myself.
We were watching children’s tv, before the school bus arrived. Whoosh, whoosh, left and right, right and left. I tried to control it by moving my head in tandem. My little girl, kept looking at me, curiously. Her head to the tv, her head to me.
Walking my labrador through the woods, whoosh, whoosh. All I could do was to look straight ahead, or I might fall to the right or fall to the left.
I could only use the word ‘whoosh’ because I couldn’t think of anything else to describe it.
I have stopped Seroxat, I said.
He went ballistic. You never, ever, stop taking medication without asking first, he bawled.
Looking back, this seems like a very bad joke.
Because I did ask, and the new doctor gave her full approval to stopping Seroxat.
Doctors don’t look back.
In her full throe of the Seroxat, bed-bound for weeks, two years running, I couldn’t get to the loo.
As doctors weren’t looking after me, and really couldn’t care less, my mum, at 84, had to move me to a sitting position and use all her strength to haul me up and me leaning on her, we got to the bathroom, and back.
I had lost all ability to remain upright.
I remained almost comatose, in the dark, lying there week after week.
It was always in the summer and poor mum sitting outside, worried sick, feeling powerless.
Her calls to the doctor often went unheeded, mum was becoming a pest.
I tried. I really tried.
We would get me outside, but my body would get in the way of my eyes.
I was like a lumpen mass.
I was getting skeletal.
Inside my head, if I was up on my feet, whatever was going on in my head, would not let me remain upright. I would feel sick and nauseous and feel myself falling – down in to some dark hole from which I would never ever be able to crawl out…
The ‘crawling out’ took a very long time to adjust to.
It was like learning to walk, talk,eat, read, watch and listen, and function, like a developing child.
Anne-Marie says
Another time on Seroxat whilst still having the whooshing feeling in my head I was on a flight and the noise was unbearable. I said to my auntie “isn’t that noise terrible” I thought something was wrong with the plane. She didn’t want to panic me so just said she could hear it too and to swallow but told me when we had landed it wasn’t the plane it was me. She was worried I would panic if it was just me as she said it is a horrible experience to have.
annie says
The two most enduring legacies from Seroxat, are tinnitus and brain zaps.
The severity of these cannot be under-estimated.
Tinnitus, that shrieking, screaming, enhanced white-noise, for which there is no cure.
It has to be ‘managed’
I saw an audio consultant who made me a gadget, put it in your ear and turn up the white-noise volume, it will blot out the tinnitus.
No, it didn’t.
The brain-zaps are something else, again.
Explosions in the head, that wake you up.
Seroxat people know all too well that they either live with these, or go down further rabbit holes if they even mention them.
You have to know how to live with them, and design your own methods.
We all design our own methods, because going to a doctor is no longer an option…
Dr. David Healy says
This may sound crazy but no-one seems to know what brain zaps – we know how they get described and they are linked to both antidepressant and benzo withdrawal but no one seems to know what the mechanism is – what’s actually going on. There seems to be some connection to eyes to turning heads of eyes – which seems peripheral rather than central. The experience of them being in the head is also peripheral – scalps and skulls do sensation – brains don’t feel.
D
annie says
If you are fast asleep and it is the middle of the night, and you are forced awake with an explosion in your head, and you have had these ‘explosions’ for twenty years, it would be great to extrapolate.
Explosive type sensations were firing off in my head after cold-turkey Seroxat all day long.
Brains don’t feel.
Yes, probably brain-zaps is the wrong use of brain. You get used to common terminology.
It must be difficult to understand from someone who hasn’t experienced the ‘zaps’.
The ‘sensation’ is in the head.
There was no other part of my body that was alerted and quite why the ‘zaps’ is interpreted as being in the head, is a mystery to me but despite that if your head is raised from the pillow with something as ferocious as some sort of ‘electrical-type energy’ coming in to the head, then could it be assumed that a peripheral nerve is ‘trapped’ and the only way to show it, is to make it appear that it is in the head.
Most people who have had the ‘zaps’ say it is in their heads.
The zaps are like an electrical shock, like struck by lightning.
I can believe that the brain is ‘shocked’ by some sort of electrical impulse going off, wherever it is going off from.
Dr. David Healy says
Annie
I’m asking you and Bob and Kristina and others to try to find an answer. It seems extraordinary that 30 years after such an obvious phenomenon starts happening no-one has nailed down what is going on. Can you guys start googling.
It is entirely possible the whole thing is scalp and scull related and head in that sense – migraines are head rather than brain. Epileptic phenomenon which are brain convulsions don’t produce Zaps
D
tim says
‘Drugs acting on the serotonin system cannot but impact on our balance and coordination”.
Before being forcibly psychotropic-drug-wrecked, via akathisia being misdiagnosed as ‘psychotic depression’, our lost loved-one could ski for miles of trails down her favourite mountain, with style, grace, safety and perfect balance.
Now she stumbles and may need support on an inch of fresh snow, – (Thirteen years after an agonising and protracted withdrawal syndrome. – Thirteen years free of all ‘medication’).
She was also my motorcycle buddy, a perfect pillion partner, intuitively knowing just when and how far to lean into a challenging series of fast bends.
It has been clear to us that one of the multitude of longterm prescription drug-induced injuries has been some degree of impaired balance. There may have been auditory nerve and/or vestibular injury as she could not bear to listen to her much loved collection of music until about 8 years off all unnecessary, psychotropic drugs.
It is too painful for her to talk about what was done to her, and what was lost in her life as a result of dangerous and inappropriate prescribing.
I am nevertheless certain this fascinating post is of great importance.
Thank you.
Kristina Kaiser says
Reading this article and the informative comments section struck a tragic chord with me when I reflect on the SSRI induced adverse effects my late teenage daughter, Natalie, experienced. Prior to her sertraline-induced death, Natalie reported many of the following symptoms: tinnitus, dizziness, grinding jaw, digestive issues, urinary incontinence, balance and coordination problems, blurred vision, lazy eye, nausea, vomiting, change of gait and trouble walking.
Never once did any doctor associate these symptoms with SSRIs. Instead, some of the symptoms were labeled as psychosomatic, and others labeled as signs of “mood disorder otherwise unspecified” (MOS was an insurance-friendly billing code created by the DSM and is no longer used). After Natalie died, I read her diaries. It was devastating to see an entry in which Natalie, who had been a well-coordinated girl prior to SSRIs, recounted how she was the last person picked for teams in gym class and was “so uncoordinated” that she “couldn’t catch or throw a ball.” It puzzled me then given that I recalled how Natalie previously excelled at rock climbing and gymnastics. Like many akathisia victims, Natalie died never knowing that SSRIs destroyed her life and ultimately ended her life.
RxISK.org articles and the comments section furthers our understanding of akathisia and other SSRI adverse effects far more than the medical profession and healthcare professionals.
Kimberly Fujioka says
I am broken-hearted reading about your daughter Natalie. I am tapering off of an SSRI and I have severe dizziness which began on Nov 15 2019. I also have hyperacusis. I’m 65. I will be ok one day or I may even have to live like this for the rest of my life. But to loose a child to these horrible drugs is so tragic. I’m so sorry. 🫂🫂 Hugs to you.
Kim
Bob Fiddaman says
Seroxat (paroxetine) has left an enduring impact on my auditory abilities, manifesting in impaired hearing that persists to this day. The once mundane occurrence of sudden loud noises now poses a significant challenge, disrupting my daily life.
Approaching 60 this year, I find myself reliant on hearing aids to navigate the auditory world we live in. I also suffer with tinnitus, a relentless noise akin to the striking of a pipe with a spanner. While the natural progression of aging or prolonged exposure to loud music may share some of the blame, the start of my sudden sensitivity to loud sounds traces back to my time on Seroxat, or rather withdrawing from it.
Reflecting on my past experiences, I acknowledge the years spent amidst the rhythms of live music events as a member of the concert security team at Birmingham NEC are a cause for my hearing loss.
It was post-Seroxat that I noticed a dislike of crowded spaces, particularly when occupied by loud individuals. While music remains okay for me (It’s rhythmic and not random), the unpredictability of sudden loud noises has become a source of immense irritation, prompting hasty retreats from such environments.
Ironically, the introduction of hearing aids, aimed at helping my auditory deficiencies, has introduced its own set of challenges. While they have undoubtedly enhanced my television viewing experience, freeing me from the use of subtitles, their amplification of other sounds presents a double-edged sword. The chirping of a bird in the Panamanian jungle now causes a grating quality when magnified through my hearing aids. Likewise, a cupboard door slamming, crockery being washed in the sink or people who talk with raised voices. I can’t be around any of the above as it’s irksome and agitates me. This problem rears its ugly head whether or not I’m wearing hearing aids.
I believe the bulk of my hearing loss is down to prolonged exposure to loud music, a consequence of my musical tastes (Rock music) and involvement in the live music scene. However, the distinctive issue of hypersensitivity to sudden loud noises remains, without doubt, linked to my encounter with paroxetine.
Funnily enough, I put forward the query as to whether people experience loud noise intolerance in the old online Paxil forum. Many in that forum had experienced the same.
chris says
“There may have been auditory nerve and/or vestibular injury as she could not bear to listen to her much loved collection of music until about 8 years off all unnecessary, psychotropic drugs.”
Post akathisia I found that listening to music that I like can keep me awake all night so I do not listen to it but also music that I don’t like such as being played prior to the Sothebys live painting auctions can actually help put me to sleep so I do listen to it then start to yawn which kicks off the tinnitus but I still manage to sleep.
tim says
A newly recognised case of PPPD?
Our permanently injured loved-one has a sister with a new miniature dachshund puppy. He is just being introduced to the outside world, and is overwhelmingly excited about newly cut grass and new smells.
With her mother walking our daughter’s own elderly collie – ( bought to try to help her recover from all of her psychotropic drug induced injuries) – the new puppy, on an extended lead, began to run at ultra high speed, spinning around her in a serious of concentric circles. He was ecstatic; but our injured-daughter was immediately in great difficulty and distress.
She cried out to her mother: “You have to take him – You have to take him”.. Completely out of character for a skilled and confident puppy carer.
Then she cried out in distress: “I can’t hold him, I can’t hold him, I’m going dizzy, I’m going to fall”.
She was largely still, the puppy was tearing around her in circles.
Any passer-by could be forgiven for thinking this must be an ‘Intense Anxiety Attack’. IT WAS NOT. There was never any episode like this prior to the inappropriate, akathisia inducing SSRI in 2011.
This was physical – ?vestibular distress?
Might PPPD still be present so many years after becoming rid of all of her cascade of toxic psychotropic drugs? I believe this is possible?
Many other, multi systems, serious injuries are indeed still present.
Any GP presented with today’s events would surely think of an MH diagnosis, and /or prescribe SSRIs (presumably without fair, full and informed consent) – and thus risk inducing akathisia all over again.
What chance has anyone like this of staying out of the hands of those alleged ‘professionals’ who maimed her, destroyed her life, and broke our hearts?
Harriet Vogt says
‘Even when your PPPD or VSS clearly began with starting or stopping an SRI, health systems are now completely unbalanced about, and blind and deaf to, the possibility’.
There is NO EXCUSE for denial or ignorance of PPPD. A few minutes websearch throws up: 1) unequivocal recognition of drug induced ototoxicity, 2) across a huge (est. 600) number of drugs, with 3) antidepressants being fingered as one of the undeniable culprits. To quote a few of many papers:
‘Ototoxicity – the Hidden Menace (2011)
Adverse drug events may not be recognized if physicians assume that pharmacologic therapy is always beneficial. Each year, the side effects of ototoxic drugs disrupt millions of people’s lives and leave a trail of upheaval in their wake.’
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3138949/
‘Antidepressants are notorious for causing tinnitus and positional vertigo’ (Clewes, 2012). (Drugs mentioned–Paroxetine, Duloxetine, Escitalopram, Sertraline, Vortioxetine).
The distinction between the symptoms of vestibular versus cochlear toxicity in this same paper seems relevant:
‘Cochleotoxicity is characterized by a dysfunction affecting the auditory system that leads to tinnitus or sensorineural damage, while vestibulotoxicity is associated with medical conditions such as dizziness, vertigo, and balance disorders (Lanvers-Kaminsky et al., 2017). ‘
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6791930/
And, as you say, ‘dizziness ‘ is recognised as one of the commonest ‘side’ effects – No 1 in the paroxetine PIL, but I can’t find any admission that these effects can be enduring or permanent. Is this criminal?
https://www.medicines.org.uk/emc/files/pil.537.pdf
Fascinating patients were able to SENSE which staff were on pills, despite knowing nothing of the set up. As you suggest, this is because they were ‘thinking’ VISCERALLY, thinking with their senses, which is how humans mostly work.
Except when they go off the rails – like the doctors who attribute PPPD symptoms to ‘anxiety’. Of course being so sensorially destabilised that you feel like a plane about to crash makes a person desperately anxious. Likewise the ‘professionals’ on X who are STILL dismissing PSSD as a symptom of depression – numb genitals, really?
The point you make about the Cartesian fallacy is fundamental to the way doctors fail their patients. This insane focus on the brain and not the bodily self. Pills you swallow surely affect the whole person, it’s not like the Gatwick Express – one stop, brain only. Is this why the adverse effects of psychotropics are called ‘side’ effects?
I confess to having had non-iatrogenic experiences that seem related to PPPD – one reason why I’m so sympathetic. Grim travel sickness as a child. The immediate, disorienting after-effects of an op to remove an ossified stapes bone and replace it with a teflon one, a miraculous ‘cure’ for an inherited condition, otoscelerosis.
I’m lucky, otosclerosis can be treated successfully Medicine is generally rather good at technology led plumbing. But PPPD and other ototoxic conditions seem hard, if not impossible to treat. I was wondering, naively probably, if any of the non-pharmacological approaches that you might use for seasickness, would be of any help – focussing on a stable point on the horizon (as you mentioned in the balance experiments), ginger tea, acupressure bands, deep breathing. Fully expect sufferers have tried them all – and more.
Ruth says
I am 19 years off Seroxat I still have the dizziness and imbalance that started after I stopped SSRI I have been told it is PPPD
Kimberly Fujioka says
I’m so sorry you still have the dizziness. I started to taper off of fluoxetine in 2018. On Nov 15 2019 I had dizziness that I still have today. In addition to that I have hyperacusis. These are both caused by tapering off of the drug. I still not off the fluoxetine yet. I’m 65. It may take me 5-10 more years to get off of it. Taking this drug is the worst thing I’ve ever done in my life.
Kim
Mr Justin Oxley says
I think that I need to have something to improve my mobility as I’m not so great at balancing when I walk now due to the PPPD. I am alot more stable on an ebike than I am on my feet due to the gyroscopic stabilisation effect provided by the spinning wheels. The only problem I get is when I have to stop at junctions, traffic lights or shop/wait in a queue as I’m then reliant on my vestibular system and proprioception to remain in an upright position.
You could spin up a flywheel inside an ebikes front wheel which would make an ebike stable when at rest. I had the idea and found this principle demonstrated below. I also think that it might be a good idea to transfer an ebikes forward momentum to the flywheel through regenerative braking. I think that spinning up the flywheel before moving off on the ebike would be a good idea. If this were done having a clutch mechanism at the rim of the flywheel could assist with initial acceleration.
https://youtu.be/5qP2BGmmO6o?si=lZ7QVLsD7ZdE1SSH
I want to be able to take an ebike into shops like the Coop, Boots Chemist and The Hamilton Practice etc. so I’m thinking of getting myself this foldable Fafreese F20 light ebike. I would be very nice if an ebike similar to this one could also act as a stabilisation device when I am out shopping or waiting in a queue.
https://www.amazon.co.uk/gp/aw/d/B0CKQDF6VT/ref=ox_sc_act_image_2?smid=A3AM0VYH33EHEI&psc=1
An ebike like this will be cheap to run (no need to get an mot, road tax or insurance). An ebike would also allow me to follow the cycle paths all the way to places like Dobbs Weir (next to the Fish and Eels pub) wearing my fishing backpack. I want to be able to get out of the damn house, get out in the fresh air and travel to places that I like this Summer.