A woman on lamotrigine, a drug I never give anyone because of its withdrawal and other problems, recently came my way. She had been tapering for a long-time partly because lamotrigine can be a nasty drug to stop but primarily because her lamotrigine support group were firm Hyperbolic believers.
An extraordinary number of people, primarily in my experience women, are believers in Hyperbolic Tapering – a very different idea to the Tapering found in Tapering Strips. That women are the believers when the idea is a very male creation – is interesting but not from a social determinism point of view.
Small Molecules
Lamotrigine, like all other psychotropic drugs, is a small molecule. Far from its size suggesting it doesn’t get up to much, small size in this context enables it to get up to far too much, a great deal of which is mischief.
If you want a medicine to be clean and focussed you need a big protein custom tailored to do one thing only. Compared with proteins, small molecules are tiny. They are not custom tailored and can go to multiple different places, act on multiple different systems and produce an array of different outcomes.
As an example of the strange things small can give rise to and the implications for tapering, consider the following.
Haloperidol in a 1mg or 2 mg dose might or might not cause extrapyramidal symptoms (EPS) including akathisia. In a 4 mg dose in healthy volunteers it is very likely to cause EPS, especially akathisia. In a 6 mg dose it is close to certain to cause EPS.
Decades ago it was common to find patients admitted to psychiatric units started on oral haloperidol 10 mg 4 times a day. This has to have been a desperate nightmare for many of them.
The image here is from Zero Dark Thirty, the movie about the hunting and killing of Osama bin Laden. As part of the hunting, the US military gave haloperidol to Al-Qaeda operatives. The aim was to induce akathisia as a means of torture aimed at getting useful information – something the Russians had been doing for decades and the Americans in Guantanomo.
When I began training, however, haloperidol narcosis was used in many places. This involved giving haloperidol 10 mg intravenously every hour for several hours. Intravenous gives a much higher dose than oral so this might have been the equivalent of 100 mg, 200 mg or more orally.
I never gave this or was party to giving this to anyone so I can’t swear to the effects but there is a good chance there were no EPS or akathisia problems, which may have let many doctors figure they weren’t being all that abusive.
How come?
Well around 80 mg, another action, an action on alpha receptors, in addition to haloperidol’s core dopamine receptor action kicks in and this alleviates the EPS. You can get a similar effect by adding clonidine to the lower EPS producing doses of haloperidol.
Now imagine you are maintained on Haloperidol 80 mg per day and want to stop it. You reduce the dose gingerly and things get worse. The Hyperbolistas tell you that you have gone too fast. This, however, is clearly wrong because in Hyperbolism, 80 mg is way above the upper dose limit to completely block dopaminergic receptors. According to the theory it should be possible to taper down relatively quickly to 10 mg or less. Instead every step of the way you will get worse.
This is not a freak of haloperidol. It applies to every small molecule. The only time Hyperbolicism holds true is in PET scans looking at increasing receptor occupancy levels at increasing doses of a drug.
In real life, Hyperbolicism is a fiction. Mark Twain said truth is stranger than fiction because fiction has to make sense. Every marketeer knows that fictions beat more detailed and complex accounts hands down. Welcome to chemical imbalances, low serotonin and hyperbolic tapering.
Zero Dark Thirty
Where do women feature in this?
So centrally that it is difficult to believe we failed to spot it up to this. Starting in the 1960s with the development of the first oral contraceptives, Ellen Grant pioneered research on the effects of hormonal preparations on a range of problems from thrombosis and cancer to mood changes. See harmfromhormones..co.uk She continued through to her recent death.
She and colleagues like Susan Bewley reported a dependence syndrome on oestrogen replacement therapies – leading to significant problems on withdrawal. Endometriosis, which is much in the news now, can often be much more of a problem after stopping contraceptives for instance.
Another woman raising a flag has been Millie Kieve, whose daughter Karen died, Millie argues, owing to adverse reactions to contraceptives. This led Millie to set up April.org – Adverse Psychiatry Reactions Information Link – and to campaign vigorously for 25 years attempting to raise the profile of these problems. Quite extraordinarily this led to a first appearance at the Edinburgh Festival at the age of 79.
RxISK had a RxISK post on Dianette, an oral contraceptive, marketed among other things to give clear skin but which decidedly leads to mood changes. Millie contributed to this post and outlines her story and many links.
Yaz is another contraceptive sold as the answer to a maiden’s prayer – about her skin.
We included most contraceptives when we created RxISK’s List of Drugs that can Cause Suicide several years ago.
Why do more people not know about this?
Ellen, Millie and others end up figuring that keeping things the way they are suits men just fine. This is difficult to argue with.
The Complexity of Women
Despite these links, my woman with a set of lamotrigine difficulties put something new, and in terms of withdrawal something at least as important as any mood effects, on the map for me at least.
Estrogens, synthetic or natural, can dramatically alter lamotrigine blood levels and the blood levels of many, perhaps all, SSRIs, and who knows what other meds women in particular find difficult to stop. Whether this is true of all women, or true of all but more markedly the case in some, a background like this makes it impossible to Hyperbolicize a treatment.
Among other things these fluctuating blood levels may shed light on Persistent Genital Arousal Disorder (PGAD), which appears particularly likely to happen in women who are perimenopausal and trying at the same time to stop SSRIs.
It may say something about why SSRIs have become a treatment for hot flashes linked to the menopause and why it looked to many companies like a good idea to push them for PMDD – even though they appear to increase the risk of aggression.
There seems every likelihood that just as the menstrual cycles of girls or women in shared accommodation can entrain to each other, so also menstrual cycles can create regular cycles in the medicines a woman is taking. The worry then is that all sorts of problems can start happening that may be put down by a woman to insufficient adherence to a hyperbolic tapering schedule when their problems have nothing to do with their failure to follow the commandments of the one true religion.
This is not just a matter of women being too complex to fit into a simple linear model. The hyperbolic model was too simple and linear to begin with. Most pharmacology is too. Within individuals, female or male, there are fluctuations in drug levels and responses to drugs in the course of day that in some cases are greater than the substantial differences between us. But all of this is written out of the script when it comes to marketing.
Add into this mix the fact that these drugs supposedly working specifically on serotonin or dopamine systems, in fact work on perhaps 100 other systems including primitive mechanisms like carbonic anhydrase.
It now appears that many small molecules, SSRIs, anticonvulsants, acetaminophen (paracetamol) get into our cells rather than just act on receptors on cell wells. Once inside, they can have effects on our chromatin that lead to enduring, even transgenerational, changes.
If we have been on any of these meds for any length of time, we have created a forcefield that no amount of adherence to hyperbolic orthodoxy can hope to manage.
The 4B movement seems to be giving rise to a modern version of the Lysistrata story from two millennia ago – They Used to Call it Medicine. We need women to restore nuance and complexity to healthcare rather than tow a male line.
Laura says
An interesting article and there are many things personally I will do differently when I try again. If not hyperbolic what would the suggestion be for women? I’m interested in a range of views. Slow?
Dr. David Healy says
I know no-one who has answers for your question. Peter Groot’s tapering strips are a good idea – they don’t tie you doing things according to a mathematical model – he expects you to listen to your body and use common sense. Peter like many others in this area is talking from a bitter experience – but fortunately for men likely not quite as bitter as it can get for some women,
There is no point turning to an expert – there are none when it comes to this problem. All the research on the strange effects these drugs can have has been done by people on the meds. This was the key point I made in a recent Mad in America webinar – Madness, Normality and Antidepressant Dysregulation, which was posted a few weeks ago on RxISK also. That needs to continue.
A second point in a recent follow up post on RxISK – Antidotes for Dysregulation is that an exclusive focus on hyperbolic tapering is getting in the way of people recognising that some components of their problems may have antidotes. The difficulties we have are not just a fight between us and the serotonin system and its receptors but involve lots of other actions of these drugs also, some of which might have remedies that don’t need tapering.
The role of Estrogen and other hormones helps bring this point out. You and others need to chase people – mostly women – who have done the research on these systems and have some idea about what can go wrong and may have ideas about what can help. This angle on your problems came on my radar because of a woman who is suffering, and other women who have lost children to some of these problems.
In addition to solving your problem, it’s going to take input from women to work out how to bring these drugs to market in a manner than makes them safer for women to take than they currently are. At present women are been dragooned into taking an increasing number of vaccines during pregnancy without appropriate guardrails being put in place to make sure this is safe.
In the case of getting off antidepressants, antidepressants now the most common chronically taken drugs in pregnancy, primarily because of difficulties in stopping them and very few doctors warn any woman that these drugs are not safe in pregnancy. It has been convenient for the system to overlook women and their safety.
D
Mr M A Horowitz says
Of course tapering strips follow a hyperbolic taper – just one of the numerous inconsistencies in this bizarre post.
Dr. David Healy says
Mark
You’re wrong. As Peter Groot has made clear often, his tapering strips have nothing to do with Hyperbolic ideas. A hyperbolic approach applies to going on a drug and looking at an effect that is closely tied to a particular receptor. It does not apply to withdrawal and does not apply to the many other actions antidepressants and antipsychotics have on receptors other than the serotonin reuptake site or the D2 receptor
D
annie says
Does the fervour for ‘Hyperbolic’ risk taking us down a ‘blind alley’ and what of the doctors who discern ‘hyperbolic’ and accept it. Is there a pressure when other solutions could be more measured and appropriate?
Mark Horowitz and David Taylor expressed their views on ‘Hyperbolic’ tapering and worked closely with Royal College of Psychiatrists ‘Tapering’ methods –
Tapering strips are one possible option. These are a roll or strip of pouches containing consecutively slightly lower doses to be taken each day. They are not licensed by the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK. This means that your prescriber might decide to use a licensed medicine instead.
The General Medical Council (GMC) says that medical professionals should aim to use licensed medications but can use unlicensed medications if there is no licensed alternative.
https://www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/stopping-antidepressants
Explanation of why and how to implement hyperbolic tapering in clinical practice
https://www.amazon.co.uk/Maudsley-Guidelines-prescribing-Prescribing/
Tapering of SSRI treatment to mitigate withdrawal symptoms
Mark Abie Horowitz 1, David Taylor 2
https://pubmed.ncbi.nlm.nih.gov/30850328/
All classes of drug that are prescribed to treat depression are associated with withdrawal syndromes. SSRI withdrawal syndrome occurs often and can be severe, and might compel patients to recommence their medication. Although the withdrawal syndrome can be differentiated from recurrence of the underlying disorder, it might also be mistaken for recurrence, leading to long-term unnecessary medication. Guidelines recommend short tapers, of between 2 weeks and 4 weeks, down to therapeutic minimum doses, or half-minimum doses, before complete cessation. Studies have shown that these tapers show minimal benefits over abrupt discontinuation, and are often not tolerated by patients. Tapers over a period of months and down to doses much lower than minimum therapeutic doses have shown greater success in reducing withdrawal symptoms. Other types of medication associated with withdrawal, such as benzodiazepenes, are tapered to reduce their biological effect at receptors by fixed amounts to minimise withdrawal symptoms. These dose reductions are done with exponential tapering programmes that reach very small doses. This method could have relevance for tapering of SSRIs. We examined the PET imaging data of serotonin transporter occupancy by SSRIs and found that hyperbolically reducing doses of SSRIs reduces their effect on serotonin transporter inhibition in a linear manner. We therefore suggest that SSRIs should be tapered hyperbolically and slowly to doses much lower than those of therapeutic minimums, in line with tapering regimens for other medications associated with withdrawal symptoms. Withdrawal symptoms will then be minimised.
Dr. David Healy says
Annie
First of all if GMC have said doctors should use licensed meds if possible, they are simply wrong. Licenses are there to constrain the claims that pharma companies can make – they should not constrain the treatments doctors give. They are issued to companies, not doctors, on the back of trials that relatively often turn out to be fraudulent.
The problems with tapering strips that Peter Groot has run into are not to do with licensing. It has been a really dim, pretty asinine bureaucracy issue. Dutch bureaucracy has a reimbursement price for fluoxetine 20 mg or citalopram 10 mg for instance but they don’t have a price for sertraline 13 mg, citalopram 12 mg, or fluoxetine 18 mg. They won’t approve the strips because they don’t know what to charge. Non-approval doesn’t mean the strips can’t be used – it means the Dutch health system won’t reimburse this treatment – you have to buy it yourself.
The hyperbolic idea doesn’t solve the problem that tapering strips solve – getting precise doses made up by pharmacists. It leaves people cutting their own and occasionally in some countries getting liquids which while still better than chopping your own is less accurate than T Strips.
But to repeat Mark and David have helped move the debate forward. However the HT idea is likely gaslighting a lot of people for whom it just doesn’t work and may even make things worse, which is a shame. Out of the gaslighting by my doctor fire and into the gaslighting by those who want to save me fire
D
Laura says
Thanks for your reply. Yes I attended the talk and was interesting to hear. I have an open mind with this topic and know from my own experience going through this had an impact on many other parts of my body. It was particularly hard at certain times of the month. Through all the information I have gathered so far I am getting the picture that as you say there is no one rigid way to do this and it needs to allow for some flexibility. I think as you say there is still a lot unknown in this area and with these drugs.
My next attempt will very much be listening to my own body and the only one person I will be listening to fully is myself. I am interested in the mind and body element to this also and the re-learning of old emotions as I feel this can come as quite a shock after being numb for so long. Again I am certainly not an expert and like many feel a bit in the dark with this. But I’m coming to accept this and will certainly be giving it another go in the hope to be off antidepressants. This is absolutely multi dimensional in my view and I do wonder whether there may be some alternative treatment potentials to aid with the process involving hormone disruptions. I also think some not all forums can be unhelpful but again that’s just my own view. I live in hope and feel so should others as the alternative to me is much worse.
Thank you for all you do in this area. It’s difficult currently working as a clinician but this is something that needs speaking about.
Peter says
I think fear is a big driving force here. The Lamotrigine withdrawal syndrome has some particularly unnerving symptoms like heart changes and cranial tension, it’s scary stuff. Like an allergic reaction. Add to that the total lack of explanation, despite much of the withdrawal syndrome overlapping the recognised side effects, and you have a recipe where one bad taper attempt has you clinging to edge in four feet of water, too terrified to do more than stick your toe out 1 inch per month to try and locate the bottom.
CU says
Dr. David Healy,
Can we even talk about mentioned tardyve dyskinesia and akathisia withdrawal symptoms? Some people get them after single pill, the others years after stopping? This has nothing to do with any kind of withdrawing…
Harriet Vogt says
Undoubtedly the high profile of the Hyperbolicity theory has done some good. Its apparent science has forced ‘the system’, to BELIEVE that tapering ADs for most patients is not a simple matter of cut ‘em in half and half again.
But, even without knowing anything about small molecules until reading this (fascinating), nor any deep science really, it seems pretty obvious that a simple mechanistic equation can’t explain a complex and dynamic, organic process . I understand the ‘masculine’/’feminine’ distinction you’re making from a sort of design point of view.
I was talking to a very thoughtful ex-patient the other day – a slim, athletic woman, who’d had a meltdown and spent a few months in a psych unit. She was horrified by the effects of ‘antipsychotics’ – describing her legs feeling like they were swelling and filling with concrete at the same time as her senses were telling her to move. Her athlete’s resting heart rate and perfect metabolic health also went totally to pot on ‘APs’ and an inpatient diet high in sugar and starch. Anyway, the point of the story – when she came out, she was advised to carry on taking the drug. She absolutely wanted it ‘out of her system’, knew full well that tapering was advised, but decided to go CT. Rip off the plaster mentality. 10 days of absolute living hell followed – and then she was fine – and remains so. Now, if she had been following a hyperbolic tapering schedule, how long would she have been stuck on the drug and how much more iatrogenic harm would she have suffered – unnecessarily?
Unlike you, I only connect to a relatively small number of patients. But my impression is also that there are more women gravitating towards hyperbolicity than men. I suspect the explanation is more likely to lie in the fact that the whole ‘market’ is upweighted towards women, than in anything particularly female. As you know, twice as many women are prescribed ADs as men, peaking at 50-59 years. Menopausal lifestage ofc, and the level of inappropriate AD prescribing for emotional menopausal symptoms is well known. https://www.themenopausecharity.org/wp-content/uploads/2021/05/Antidepressants-and-Menopause.pdf
Medicine still reeks of misogyny, even though in the UK nearly 3/5 of GPs are women. I guess paternalism is intrinsic to the system. We don’t seem to be able to shake ‘Wandering wombness’. I’m also prompted to think, reading your blog, that oestrogen, our biological power,house, albeit not wholly benign, increases our risk exposure.
Millie Kieve will be pleased to see that young women seem to be wising up to the risks of hormonal contraception – including psychological disturbance . In the language of corporate ‘risk comms’ this translates as ‘mood swings’
https://www.nhs.uk/contraception/choosing-contraception/side-effects-and-risks-of-hormonal-contraception/
Interestinng that women’s perceptions of the adverse effects of the pill feel pretty close to those of antidepressants – as well as emotional disturbance, weight gain, migraine, fear about fertility issues, and a fundamental sense of undermining of natural human processes.
https://www.sciencedirect.com/science/article/pii/S0277953621005797
chris says
“when she came out, she was advised to carry on taking the drug. She absolutely wanted it ‘out of her system’, knew full well that tapering was advised, but decided to go CT. Rip off the plaster mentality. 10 days of absolute living hell followed – and then she was fine – and remains so. ”
It would be interesting to know how long she was on the AP before she ripped herself off. Very dangerous thing to do but totally understandable if you’ve been subject to AP’s – they are disgustingly vile drugs. She maywell find out further up the line why she should have gone down slower. Plenty people end up on a CTO or such like and forced depot injection of hell on earth. One has to be very smart to stay out of the psych hell hole merry go round. For those of you who may be reading this AP’s are vile, I know, but going CT could cost you your life.
Dr. David Healy says
Chris
Stopping antipsychotics may be even harder than stopping antidepressants. Having worked closely with many people over the years, I know that no-one has the answers here. These drugs are so demotivating that they get in the way of anyone on them being able to liaise with others to find out what might work. And antipsychotics include many drugs with very different profiles so what might work for one person won’t for the next.
Motivation is important and I lean toward saying that if someone is sure they need rid of these drugs – depending on what the background issues were and the risks their local services pose if they relapse – then CT may be an option, Tapering is not always the best option in this case. But ideally it cannot be CT on your own. You need to get someone to stay with you as you go through what may be a very difficult period.
You say it may cost the person their life – it may. But staying on the meds may also be not living. There are no good options here.
D
chris says
The festive season is here, Christmas is almost upon us. For people who do not have a psych drug compromised body will be able to cope with the booze, chocolates, caffeine and parties. For those of use who have been compromised we need to stay level from all that and not indulge too much. These times can make us vulnerable.
Mo says
Tapering Off Medication.
This is all very interesting. I mentioned in a recent post that I had heretofore never even heard of hyperbolic tapering, but intended rectifying this ignorance. Since then much of my YouTube content etc. has been overflowing with the theory. Roughly put, I think that it boils down to something like ‘The Last Cut is the Deepest’, so, for some, tapering off the last vestiges of certain drugs would be more difficult than earlier points in their journey.
Complexity.
I get the point Dr Healy makes about the small molecules, and that the actions of certain drugs are multiple, and not every effect necessarily requires long, slow, tapering. Also, some people seemingly do not need to taper off certain drugs at all, they can cope with stopping ‘cold turkey’, or can come off them reasonably quickly, while other people cannot tolerate their medication being tapered off other than extremely slowly.
The Menstrual Cycle.
Laura, I think, raises a valid issue: ‘It was particularly hard at certain times of the month’. I have heard women mention extra difficulties being experienced in the premenstrual phase. I’m wondering if different, safer, treatments for premenstrual dysphoria or tension could be helpful.
Change to The System.
Harriet Vogt makes, in my opinion, an important point when she says, about stopping antidepressants, ‘Undoubtedly the high profile of the Hyperbolicity theory has done some good. Its apparent science has forced ‘the system’, to BELIEVE that tapering ADs for most patients is not a simple matter of cut ‘em in half and half again’.
The Power of Belief.
Buford Stefflre wrote about theories sometimes being ‘useful’, as opposed to their being necessarily ‘true’. Not everything, at this time, can be proven as objectively true. I think that there are many beliefs, intuitions, sources of hope that we can hold on to, and some of these can occasionally give us as much inner certainty as facts.
Hope.
As Laura says, she lives in hope, as should others.
Convincing Others.
When one reads the heart-rending stories of those individuals and families who have been so damaged and even viciously destroyed by prescription drugs it is difficult not to be affected. This disaster could happen to anyone. Absolutely anyone. Thus, every person has an incentive, in addition to a duty, to campaign for change to the way things currently are.
annie says
I should call my Seroxat cold turkey, hot-cold-turkey. One every other day for two weeks, then stop, she said. What would this achieve. I did that and it wasn’t until the last day of dropping off that things took off to an almighty crash. Every day brought a new hellish symptom that I struggled with. After seven weeks with no Seroxat, things had taken a mighty turn. I was beside myself; if you have seen a heroin addict lying on the floor, curled up, shaking, crying, in the depths of a physical and mental assault.
Grabbing at the pill packet, and swallowing a Seroxat, it got a whole lot worse and the doctor was confronted with a hysterical person completely out of their mind and climbing the walls. The insanity of the next few weeks, not just with me, but from the doctor and psychiatrist, meant they were playing with fire with shocking and life-threatening repercussions.
So how would I now get off 40 mg. Seroxat. In comes the hyperbolic plan. Quite a quick drop to 30 mg. with the tablets and then the liquid for the next few months. That worked well until the last few mls. Off I went again, hyperventilating, crying, etc. etc. I couldn’t restart the drug this time because of what had happened the last time. Weeks and weeks turned in to months until I finally reached a point where it all calmed down without anything catastrophic having happened..
Cold turkey is extremely dangerous and I would suggest that nobody does that. Whether I could have gone faster with the liquid, I don’t know.
The point is that however fast or slow you go, you are comfortable that no-one gets hurt, that no-one gets killed, that you are not terrified out of your wits, and that someone in a position to help actually does that. Not having daft ideas thrown at you, and you, alone, are left to pick up the pieces.
When doctors play fast and loose with your life, it is the worst journey in the world, and carries through to those around you, and doctors should really get with it as people all over the globe have unique stories of being left in the lurch when push comes to shove.
Dr. David Healy says
Thanks for this Annie. One quick check – the hyperbolic idea is very recent and you stopped a long time back so it was tapering now hyperbolic tapering? It turns out to look like what hyperbolic tapering might recommend – especially at the end. But it is also what Peter Groot and everyone who advocates tapering say – there will be tricky points where you need to wait and go slow and these might not happen at the end – they can happen at various different point
If you go back to the Side Effexor Withdrawal post you will see someone who found it impossible to even begin but once an antidotes enters in there is no problem.
One of the drawbacks to the hyperbolic idea is that for people who have had it rough at various points, there is a grim message in the future which is that it will be even worse at low doses.
No one is advocating Cold Turkey. I’ve seen several people opt for that though – as the strategy they figure will suit them. They’ve had a grim time but a much much shorter grim time than people taking it much more slowly which raises a question Harriet poses – yes it may be easier going very slowly but are we causing long term problems by staying on much longer. Much longer increasingly seems to entail years not just months.
D
annie says
You are quite right, I used the term hyperbolic when it was a tapering plan. I thought it was quite a close fit as hyperbolic goes, but I take the message that hyperbolic today could lead to long term problems and the warnings that things get a whole lot worse at the end plus the emphasis on years to get off the drugs.
I was concerned that cold-turkey can lead some doctors to assume that you have consummate mental health problems and don’t take it seriously and for some people this can lead to bad outcomes. I had a big problem with the psychiatrist doubling the dose.
I guess my mistake during the taper was not to adjust when things went wrong, but I didn’t know that then. Thanks to Peter Groot and others.
Thanks for the clarity. I appreciate all you have said.
Harriet Vogt says
Your point is very well made, Annie.
I read a review of a recent piece of research, led by Cosci, in MiA – where the findings were both alarming and absolutely reflected the experience of so many harmed patients. In the majority of cases researched, withdrawal was misdiagnosed as ‘mental health’ problems. No doubt leading to further inappropriate drugging and iatrogenesis.
“In 58 (78.4%) of the 74 cases, the DSM-5 diagnosis of current mental disorder was not confirmed when the DID-W1 was completed since patients’ symptoms corresponded to a diagnosis of current withdrawal syndrome.”
https://www.madinamerica.com/2024/09/antidepressant-withdrawal-commonly-misdiagnosed-as-mental-illness/
Altostrata/ Adele Framer has described how, despite living in San Francisco with access to the supposedly brilliant UCSF School of Medicine, she had to consult THIRTY psychiatrists before she found one man who recognised withdrawal and helped her. All the others assumed she was ‘crazy’.
She’s characteristically drole about this experience now– and advises patients to show NO EMOTION in front of psychiatrists. Much easier said than done ofc.
Funnily enough the one drug that helped her stabilise is one that David doesn’t prescribe because of withdrawal issues – lamotrigine. Her individual case was terrible – it took 11 years to recover and she had to endure life threatening cardiac issues and a serious intervention. There’s nothing cookie cutter about withdrawal, clearly.
tim says
Thank you for your latest posts on RxISK and DH Blog.
Over 56 years of practising and studying medicine – (studying long into ‘retirement’) – yet the most important, most scientific, detailed information and understanding re clinical pharmacology, and especially drug withdrawal, has been learned from RxISK and from yourself.
Undergraduate, postgraduate and Continuing Medical Education (CME) did not adequately inform on such a vital understanding, which is so important for patient safety.
It seems that there was an omission in my medical training here.
It would seem reasonable to ask if other doctors may benefit from a greater understanding of the complexities, dangers of, and adverse patient experiences of prescription drug withdrawal?
With the priority now afforded to ‘Deprescribing’ and ‘Medication Reviews”. might this now be of even greater important?
Harriet Vogt says
The example I gave was in NO WAY intending to suggest that coming off psychotropic drugs CT is a good idea.
For what seems like the majority of patients, it’s dangerous, even lethal. You know better than anyone, Annie, it nearly killed you.
Arguably, the company promoted myth that discontinuation was ‘mild and short-lived’ leading to careless ‘cut ‘em in half and half again’ prescribing behaviour, is effectively CT, And probably the major underlying cause of the global precribedharm community.
Why these particular drugs can be so awful to get off I’ve no idea – because for other classes of drug it can apparently be quick and easy. It sounds like the small molecules – which spread like scattershot throughout the system – may well have something to do with it? Maybe the large protein single purpose drugs, David talks about are easier?
I was trying to use a very extreme example to raise two issues, both of which David has discussed at length here and elsewhere:
First – there is no desprescibing algorithm or formula that works across patient populations. It’s highly individual.
What enabled this individual, the woman whose case I cited, to CT successfully? Who knows? Maybe because she hadn’t been on the drug for more than a few months? Maybe her extreme underlying physical fitness helped? Despite akathisia and the ‘leadening’ effects of co-called antipsychotics, she even started a running club for patients in the unit.
The other significant issue her case raises – again one David has discussed at length – is the extent to which tapering slowly – risks causing more damage than a faster taper, because it prolongs the patient’s exposure to a neurotoxic substance?
James Moore – such a wonderful, thoughtful man who recently called Hyperbolic tapering a ‘sticking plaster’ – explored this in a really interesting interview with Giovanni Fava. He echoes a lot of what David has said:
‘So, we can reduce very slowly, if you wish, but be aware, by doing this, we prolong your exposure to the antidepressant…
So, when I discuss with a patient, I’ll say that most of the patients, 90% of the patients respond, “Please, get this medication out of my body as soon as you can.” Then, we continue with that, but a basic problem which is not only in this field but in psychiatry and in medicine today is TO BELIEVE THAT THERE IS A PROCEDURE WE SHOULD APPLY TO ALL PATIENTS, AND THAT IS CLINICAL PRACTICE SHOWS THAT IT’S NOT POSSIBLE.’
https://www.madinamerica.com/2021/11/giovanni-fava-a-different-psychiatry-is-possible/
annie says
Katinka delves in to ‘Tapering’ published today in the Daily Mail, with a headline change mid-day
Full article for those unable to access
Millions can face horrifying side-effects when they try to stop taking antidepressants. But there IS a better way to come off them…
By KATINKA BLACKFORD NEWMAN FOR THE DAILY MAIL
Published: 01:51, 26 November 2024 | Updated: 02:11, 26 November 2024
Stutters, sex problems and terrifying memory lapses: Doctors warn how antidepressants can change ‘brain chemistry’… and the problems really start when you try to quit them
https://www.dailymail.co.uk/health/article-14124185/Millions-Britons-face-horrifying-effects-try-stop-taking-antidepressants-better-way-come-them.html
At the start of the year Julie Hiener developed a dramatic stutter. She struggles to get the words out as she tells me: ‘I just woke up one day and I couldn’t speak properly.’
This is one of many serious neurological and physical symptoms the 60-year-old mother of two has suffered since coming off antidepressants. She continues, tearfully: ‘Sometimes I can’t get up or even face having a shower. I’ve had to give up my job as a carer. I’m a shadow of my former self.’
Julie, from Dorset, contacted me through antidepressantrisks.org, a non-profit organisation I set up with experts after I suffered an adverse reaction to an antidepressant 12 years ago.
Since then I’ve campaigned for awareness that while these pills can be helpful for some, for others they can have dangerous, debilitating side-effects – while you’re on them, but also when coming off them.
Julie is one of a growing number of people who tell me they started out well on antidepressants, but now have had their life destroyed by withdrawal symptoms months or years after they have come off them.
This is a problem faced by millions of Britons who, experts say, are not being sufficiently advised by their GPs that it can be dangerous to stop or switch antidepressants abruptly.
Under new guidelines from the Royal College of Psychiatrists (RCP), the advice when stopping antidepressants is ‘a gradual taper’ – this is to reduce the risk of withdrawal symptoms that can make patients unwell (and may be seen as a sign of the illness returning, so their doses are actually increased).
Yet patients can find tapering difficult because reducing the dose by tiny amounts involves taking antidepressants in liquid form or using special tapering strips (a roll of pouches containing consecutively slightly lower doses). It is extremely difficult to get either in the UK.
Julie was first prescribed antidepressants, aged 19, after being hospitalised for severe mental distress. She was put on 30 mg of the antidepressant citalopram, a type of SSRI (selective serotonin reuptake inhibitor).
These drugs are widely prescribed and are thought to act on serotonin, a chemical messenger that carries signals between nerve cells in the brain and regulates mood.
‘The citalopram stabilised me and I carried on life as normal,’ says Julie. ‘I married my husband Mark at 23 and had two kids. I was always very driven so I juggled part-time jobs with studying accountancy and being a mum.’
As the kids got older, Julie became a carer – in 2019 setting up her own agency (Mark works as a warehouse assistant).
She was on the same dose, 30 mg of citalopram, for 37 years. ‘It was on a repeat prescription and it was never suggested I should stop,’ she says.
But then in 2021 Julie woke up with lower back and leg pain. A scan revealed an inflamed bursa (a fluid-filled sac) between the vertebrae in her back. Over the next three years she tried various treatments including a steroid injection and prescription painkillers, but nothing helped.
In April 2023, Julie’s GP suggested there was a type of antidepressant that might also help Julie’s back problems. She switched Julie to duloxetine, a serotonin–norepinephrine reuptake inhibitor (SNRI). These drugs are thought to block the reabsorption of both serotonin and another chemical messenger, norepinephrine, in the brain.
Julie recalls: ‘She just said stop the citalopram and begin [taking] 60 mg of duloxetine overnight. I thought finally there was a solution and that I’d be out of pain.’
But the back pain didn’t go away and within weeks she felt unwell.
She recalls: ‘I felt so tired all the time, as well as sick, dizzy and just out of it. I had to keep working, but by the time I got home in the evening I was flat on my bed.’
A few months later, Julie started suffering memory lapses. ‘I’d be driving through town, and I’d suddenly think: ‘How did I get here?’ ‘
There were other worrying changes: ‘I’d start conversations with people and I couldn’t understand what they were saying; it was like they were talking in a different language.’
Because nothing else in her life had changed, Julie wondered if switching antidepressants had been the trigger. She went online and found people with similar symptoms. Some advised that she shouldn’t have been switched immediately from citalopram to duloxetine but been tapered off the SSRI gradually first.
‘Those who’d been on antidepressants for a long time were tapering over months or years, whereas I’d stopped the citalopram on one day and started the duloxetine the next,’ says Julie.
‘Initially I was furious with my GP, but then I thought she was probably doing her best.’
The issues with her memory began to affect Julie’s work, so last December she gave up caring for clients herself. As she explains: ‘I was working with vulnerable people and looking after their medication and you have to have your wits about you.’
As the duloxetine wasn’t helping her back pain (even though the GP had upped the dosage), it was agreed she should come off it, first going from 90 mg to 60 mg.
But this triggered more withdrawal symptoms, including ‘horrendous heart palpitations – I just went to bed for weeks’.
These symptoms worsened when she reduced the duloxetine to 30 mg at the end of December 2023. ‘I had numbness in my left arm, heart pain and my blood pressure shot up,’ she says.
Nothing could prepare her for what happened two weeks later.
‘I woke one morning with a severe stutter. At first, I thought it was funny, but it continued.
‘My GP is floored: she sent me for a brain scan but it came back normal. I’m convinced it’s a symptom of withdrawal as other people have reported speech problems.’
Julie’s other symptoms have worsened to the point where she is now bed-bound. ‘I don’t have energy to even watch TV, and my business is sinking. I have a three-year-old granddaughter but when she visits all I can do is lie in bed. Mark has to do everything for me.’
The lowest dose of duloxetine is 20 mg and in March Julie was switched to another antidepressant, amitriptyline, so she could come off duloxetine.
The amitriptyline was in liquid form which allowed her to taper by 1 mg per week. It took two months but she finally came off it.
But despite the tapering, her symptoms worsened to the point where she became suicidal, she says, and she decided to go back on to the citalopram. ‘Because I’d been OK for years on citalopram, I thought going back onto it would solve things. But nothing has changed,’ she told me tearfully.
Julie has sent an email to 25 health professionals begging for help. It ends: ‘I need my life back. Is there anybody there who can help me please?’
Joanna Moncrieff, a professor of critical and social psychiatry at University College London, says: ‘These drugs are changing our normal brain chemistry in ways that we do not understand.
‘The result is long-term side-effects that we don’t know how to treat and can go on for years. These include neurological symptoms such as ‘brain zaps’, jerks, and tics – and whilst I’ve not personally come across someone developing a stutter, it’s possible
‘Many doctors don’t appreciate the variation between antidepressants and you can’t just substitute one for another. Coming off citalopram should have involved a slow taper of many months, if not years.’
Professor Moncrieff is contacted regularly by people like Julie struggling with withdrawal.
‘People are desperate,’ she says. ‘They’ve had to give up work, their lives turned upside down. It’s well documented that some become suicidal when trying to get off antidepressants.’
Around 8.6 million people in England were prescribed antidepressants in 2022/23.
But opinion differs as to how many who come off them then suffer from withdrawal symptoms.
In 2019, a study led by the University of Roehampton concluded that 56 per cent of patients would experience them, with almost half of these people reporting the symptoms as severe.
Yet in June, a research review published in The Lancet suggested that only one in six patients suffered withdrawal symptoms, with only one in 35 experiencing symptoms that could be described as severe.
In response to the review, Professor Carmine Pariante, a leading psychiatry expert at King’s College London, wrote that it proved that ‘the myth that antidepressants are addictive has been debunked’. This was backed by the RCP, which posted Professor Pariante’s article on social media saying ‘this is a must read’.
Other experts were critical of the report. Professor Moncrieff says: ‘Most of the studies involved participants who had only been taking antidepressants for a few weeks or a few months, whereas around four million people in the UK have been on antidepressants for more than two years, while two million have been on them for five years or more.’
Peter Scott-Gordon, a retired psychiatrist, was so incensed by the RCP’s response that he wrote to the college president, in a letter he’s shared with Good Health, stating that ‘people . . . have suffered life-changing harm from antidepressants . . . some of us have been personally disabled for life, some of us have had our children or husbands killed by the adverse effects they induce’, and that the RCP clearly ‘does not prioritise patient safety’.
The 57-year-old former clinician has personal experience of antidepressant harm, which began almost 30 years ago when he had sleeping problems after his first child was born. He was diagnosed with general anxiety disorder and prescribed an SSRI, paroxetine.
It didn’t help his sleep so he stopped taking it after five months and was hit by withdrawal symptoms. He recalls: ‘I felt nauseated, my head was spinning, I felt this ache behind my eyes and I couldn’t do physical things like gardening.’
Peter went back on to the medication and felt better. But he didn’t like the side-effects, which included sexual problems and urine retention, so he tried to come off it again.
In fact, over the next two years he made many attempts to do so until, six years later, in 2005 he finally succeeded by using a liquid form of the drug so he could reduce it slowly over 18 months.
But four weeks after stopping the paroxetine altogether he was admitted to a psychiatric hospital where he was given many other drugs and electroconvulsive therapy (ECT), which he says has seriously affected his memory.
He decided to go back on to paroxetine which he has now been on for the last 20 years. ‘I will have to live with the symptoms,’ he says. ‘I cannot risk putting my family through what I put them through before when my kids [his son is now 27, his daughter 23] nearly lost their dad.’
As a result of his own experience he warned patients that he couldn’t give ‘any certainty that the benefits of these pills will outweigh the harms and there’s no guarantee you’ll be able to get off them’.
What is essential, Professor Claire Anderson, president of the Royal Pharmaceutical Society, says, is that ‘prescribers and patients work together when tapering or stopping medications like antidepressants as all patients are individuals. It’s crucial to be realistic about the time it can take to come off them, and ensure patients are supported to reduce as slowly as they need to’.
One of the problems patients face is the difficulty in reducing the dose. In 2020, the RCP published a guide which recommended that, if you experience withdrawal symptoms, you reduce your dose by only 5 or 10 per cent.
However, this isn’t always possible as some antidepressants are available only in tablet form.
Simply crushing tablets is one answer – but one fraught with the risk of inaccuracy.
While 80 per cent of antidepressants in the UK are available in liquid form, pharmacists often don’t stock them, so they have to order them, says Dr Mark Horowitz, a clinical research fellow in psychiatry at North East London Foundation Trust and author of the Maudsley Deprescribing Guidelines (for clinicians).
And liquids can cost anything from £10 to £200 per month, while tablets are mostly less than £5 per month – and for years GPs have been told not to prescribe them, he adds.
Pauline Dinkelberg, a former intensive care nurse who has suffered with antidepressant withdrawal, is chair of the Association for Tapering Medication, a patient group in the Netherlands. She says they are inundated with patients from all over the world because they offer antidepressant tapering advice.
‘Often when they come to me it’s too late because they’ve come off too quickly and suffered symptoms of too rapid withdrawal.’
She is campaigning for wider accessibility of tapering strips. These are made by only one Dutch company and are costly, at around €95 (£79) for 28 days’ worth (these strips are available for over 50 drugs, including most SSRIs and SNRIs). But because the strips are not licensed in the UK, the prescribing doctor could be legally responsible, unlike for a medication that is licensed where the manufacturer takes on the liability. So doctors here are more reluctant to prescribe them. There is also time-consuming paperwork involved in getting a prescription from an overseas pharmacy.
Professor Moncrieff is one of many UK experts who thinks tapering strips should be available on the NHS. ‘People are suffering because they often weren’t warned of the risks of taking antidepressants, so we should be giving them all the help they need to get off them.’
A spokesperson for the Royal College of Psychiatrists said: ‘The college’s resource on stopping antidepressants offers information on several different methods of reducing the dose, for a variety of medications. We would encourage anyone who is thinking of stopping their antidepressant to speak to their doctor first.’
A helpline can reduce dependency and withdrawal side-effects
Leading experts have long argued that the UK needs a helpline for the millions struggling to cope with the effects of quitting prescribed medicines such as antidepressants, benzodiazepines and opioids.
Such support, many believe, is vital for patients desperate to stop taking the medicines and reduce withdrawal symptoms ranging from dizziness and headaches to loss of sex drive and what patients describe as ‘brain zap’ electric-shock sensations.
It’s been estimated that there are more than two million people in Britain stuck on antidepressants that they no longer need. New UK research shows this kind of support can benefit these patients.
The study, in the journal JAMA Network Open, comes five years after a landmark report by Public Health England that called for a national helpline and website to help those dependent on prescribed psychiatric drugs.
But since that report came out, nothing has been done.
In the new study, 330 patients who wanted to stop their antidepressants and were judged by their doctors to be at low risk of relapse, were split into two groups.
Those in the first group were seen by their GP and advised to reduce their dose gradually; the others went through the same process but also had advice online and from psychologists on the phone based on cognitive behavioural therapy (CBT) techniques.
After six months, about 42 per cent of the first group came off their pills. But for those given additional advice, the figure rose to 46 per cent – and these patients had fewer withdrawal symptoms and reported better wellbeing.
Una Macleod, a professor of primary care medicine at Hull York Medical School and a co-author of the study, said: ‘Our findings suggest the UK should establish a national helpline, by phone and online, to help people intending to come off the medication.’
Co-author Joanna Moncrieff, a professor of critical and social psychiatry at University College London, says a 4 per cent difference would mean thousands potentially benefiting from a helpline.
As well as phone support, this study group was given access to an online module that used CBT to bolster their emotional resilience while withdrawing from antidepressants. They also had practical advice on dealing with withdrawal symptoms – this was the most popular part of the scheme.
Tony Kendrick, a professor of primary care at the University of Southampton, who led the new study, said: ‘Our intervention could be offered to hundreds of patients in a short space of time at low cost. It is cost-effective for the NHS.
‘Specialist clinics are expensive and we have shown they are not necessary for more than 40 per cent of people.’
A spokesperson for the Department of Health and Social Care said the Government was ‘committed to supporting people with their mental health’, and had invested ‘an additional £2.3 billion’ annually until 2024.
JOHN NAISH