I recently had a request for input on akathisia and withdrawal related issues that for some reason charmed me into responding. The back and forth however began to sink into a quicksand that can put me off responding.
There is an old aphorism about experts – a true expert is s/he who knows how little s/he knows. Sounds cute but it’s not what anyone who consults someone they believe to be an expert want’s to hear.
But when it comes to drug induced problems, perhaps psychotropic drug-induced problems in particular, like protracted withdrawal, PSSD, or drug induced akathisia, which we have known about for 7 decades but still don’t understand, for instance, it’s difficult to see how there can be experts. It is of course also difficult to see how Akathisia, a killer of so many people, has somehow escaped attention and managed to remain so mysterious for so long. See also Akathisia Anthem.
This doesn’t stop people hanging out shingles claiming to be experts. One doctor approached me recently seeking help for akathisia and was surprised to hear that I didn’t believe in – hadn’t in fact heard about – the hypodopaminergic theory of akathisia. Some dude, at some point, thinking pretty simplistically appears to have concluded that because akathisia can be caused by dopamine antagonists this must mean its a hypodopaminergic state. This implies that dopamine agonists will cure it which they don’t.
This doesn’t stop ‘experts’ claiming expertise and supporting their claims by chanting hypodopaminergic mantras which sound good to lay-folk and even other doctors.
It doesn’t stop ‘experts’ faced with people whose Persistent Postural Perceptual Dizziness (PPPD) or Visual Snow or PSSD has been triggered by an SSRI recommending an SSRI – See posts on PPPD and Visual Snow Epidemic.
The brutal reality that people find hard to grapple with and keeps all of us looking for experts is that we are told on all sides we know nearly everything about everything and as even June Raine the CEO of Britain’s drugs regulator was heard to say a while ago – doctors can do so much these days, they can even change men into women.
Facing someone like me, or doctors like Stuart Shipko, who might say something like the following – it would be nice to consult and take your money off you but when I can’t offer you anything this feels uncomfortable – the response often is one or both of two things:
- Do you know any doctor then, who can help me?
- Do you know any drug/treatment that can help me?
I know people don’t mean it, but this can come over as semi-hostile as though I’m being deliberately difficult. Maybe I’m over-sensitive or this effect is generated by the fact that hundreds of people don’t take the initial response as genuine.
Sometimes I’ve ended up saying – if I knew the answers do you think I’d withhold the name of someone who can help or some treatment that would help?
How to Manage Quicksand
These days before we get to this stage, I have usually referred people to Chris’ Pyridoxal-5-Phosphate post.
The discovery that P-5-P might help akathisia came about because Chris was in a desperate situation, simply not being listened to and forcibly given treatments that were causing his problems. He scoured the literature and found mention of P-5-P as a treatment for akathisia, which oddly has been sitting there in broad daylight for years without becoming widely known. He tried it and it worked.
I’ve recommended P-5-P to other people, and it seems to have helped some but not all. I can even think of reasons why it might help – antidepressants and antipsychotics can deplete B vitamins, especially B6 (P-5-P is activated B6). But P-5-P doesn’t work for all people and it would be wrong to sell it as the answer.
The recent charming overture led on to the following, even giving me a link – How We Cured Akathisia:
Jordan Peterson’s site has details on how he and his daughter cured their akathisia – what do you think of their protocol which involves hydromorphine and Tylenol/Codeine combinations.
Reading the Peterson site and related material its very clear he was in a desperate state, just as bad as Chris. And its pretty clear morphine worked for him. After going through hell, he is completely back to normal.
I can’t link morphine to P-5-P, so what’s going on here?
One possibility is that there may be a number of akathisias, each with different treatments.
Another is that our physiologies can be very different and what works for you might not work for me.
The key thing though is to believe Chris, Jordan (and Mikhaila). The key problem is not being believed.
People suffering akathisia rarely have an incentive to lie about something that has helped them while having a lot of incentive to try and get doctors to listen to them when the doctor is recommending something that Chris for instance knows is not going to help or Mikhaila knew would not help her father.
And just like the SSRIs and B6 link, I can see why the Peterson protocol might work. If you google morphine and akathisia or restless legs you find that it is a treatment option. It isn’t just one crackpot doctor or doctors who think opioids are being treated unfairly saying it helps but a consensus among doctors who support the idea that it should not be the first line treatment but has a place – see Opiates and Restlessness.
In the same way its possible to see how Tylenol – acetaminophen (paracetamol in Europe) – might help; it works on S1 receptors.
But all of this is semi-irrelevant. The Peterson’s didn’t figure they should try this because they knew all about S1 receptors. They tried morphine and acetaminophen because they had accidentally had them before and noticed an effect and they were right.
With morphine being proposed as a cure, their next problem was probably getting a doctor to believe them. Getting an ‘expert’ to accept that the person facing them, who has no medical training, is in fact the expert on the right drug for them. And it looks like this is what happened in Peterson case.
I often recommend red wine as an option for akathisia. Why? Well we ran a healthy volunteer study 20 years ago where a single dose of an antipsychotic caused marked akathisia. The volunteers were told not to drink afterwards as they might have had a benzodiazepine and the combination of alcohol and a benzo would be risky if they had to drive for instance. But some of them paid no heed to me and found that red wine was better for their akathisia than the anticholinergic drug we had given them.
It’s likely that lots of people on antipsychotics over the years have found alcohol and nicotine have worked for them. Rather than pay heed to this, ‘experts’ have looked down on them or shouted at them that they are degenerate and beyond help.
It’s clear alcohol is not the right treatment for everyone, any more than morphine or P-5-P are but we need to be paying a lot more attention to the treatments that experts by experience discover.
Other Expertise?
When it comes to withdrawal, what about Tapering Strips?
Tapering Strips, introduced by Peter Groot and Jim van Os are definitely helpful and stem from an expertise borne from experience. A key point to note though is that these are practical tools rather than theoretical expertise.
The same is true of Bob Fiddaman’s efforts some years back to push for making liquid formulations of the various drugs available.
The system, however, resists these practical steps even though they are a clearly sensible idea and don’t even commit those who support them to saying that antidepressants come with serious drawbacks.
This is somewhat different to a position which claims that withdrawal is easily solved by hyperbolic tapering, which implies we know what is going on when we don’t. There are almost certainly some antidepressant dependence states that can be managed by classic approaches to withdrawal – tapering slowly. But for many of these states there is a neuropathy component also and while tapering slowly can help we don’t really know what is going on and too rigid an adherence to theory can be a problem.
There is one more set of experts to consider. Some people get the message and say – well it would still be nice to have someone to talk to – a therapist or counsellor. Surely there is no problem with that.
Trouble is, very few nice people can resist helpful suggestions. These can range all the way from therapists saying to people with PSSD that you’ve been abused during children but just can’t remember it. Or they can make the slippery slope toward another drug a little bit more slippery. It’s difficult for supportive helpers not to think they are a little bit superior to or wiser than you – they after all aren’t in the mess you’re in, which somehow is your fault.
Moral of the Story
One moral of the story is it’s better to stop looking for experts. When it comes to drug induced injuries, there are none. Those who hold themselves out as experts risk harming us more often than they help. The best bet is a support group of folk who know how little they know – other than perhaps having found something that has mercifully helped them.
In the case of akathisia in particular, groups like MISSD are doing extraordinary work explaining the problem, offering helpful suggestions and raising the profile of a problem that takes so many lives you’d have thought we be working all out to make sure people knew about it. MISSD are doing the kind of work you’d figure the experts or professionals in psychiatric associations like the Royal College of APA should be doing but aren’t.
Katinka Newman’s AntidepressantRisks.org and her book The Pill That Steals Lives brings out just how disastrous it can be to listen to the doctors who are supposedly looking after you
Another group that features in the slide at the start of this post is KnowRisks.org run by Heather McCarthy and Lee Ford. Groups like MISSD, Antidepressantrisks and KnowRisks are born from lived experience of a particularly bitter kind.
annie says
How We Cured/Treated Suicidal Akathisia
July 10, 2022
By Mikhaila
There is no doubt Mikhaila Peterson understands what Akathisia is.
Funnily enough, in recent weeks I have listened to Jordan Peterson being interviewed and his podcasts as the hype around this man and his daughter is prodigious. Piers Morgan recently gave him a lengthy interview, followed by a lengthy interview, Jordan and Mikhaila. Piers hero worships Jordan, as do millions around the world. Mikhaila told Piers that she took a steak only diet because of the severe arthritis she had suffered as a child.
Jordan Peterson often has tears, with Piers he said that it is often all too much, the way his mind takes over and that he can’t stop. Jordan and Mikhaila are starting to develop their own university.
Surprisingly Jordan has a wacky sense of humour, seemingly at odds with his serious way of coming at things but it gives perhaps an endearing enticement to his millions of followers.
No doubt ultra smart cookies.
MISSD took the world by storm and what Wendy Dolin has achieved is second to none.
The infamous talk at RCP, the tube advertisements, the billboards, the videos, the courses.
Stewart jumped in front of a Chicago train from Paroxetine.
Katinka Blackford Newman also has a site, full of the injured and bereaved from Akathisia.
Moral of the Story
One moral of the story is it’s better to stop looking for experts. When it comes to drug induced injuries, there are none. Those who hold themselves out as experts risk harming us more often than they help.
100% backing to the ‘experts by experience’ who don’t clown around…
chris says
“The key problem is not being believed.”
This is what happens to the point of severe abuse – the state you are in is because of something you must have done, it’s not the drugs and if you mention it again you’re going to be sectioned”
I still live a very careful life and in some fear of akathisia to ending up dead in a hellhole. That said, in over two years now I’ve no hint of this horrific state overcoming me, so I’m still taking P5P and on a low glutamate diet.
Kate Shanahan says
How many mg of P5P do you take?
Bob Fiddaman says
Q: What’s a good thing for a hangover?
A: Drinking heavily the night before.
Conversation between Rik and Mike, the Young Ones, circa 1980s.
—
Given akathisia is a condition related to pharmaceutical products, the same comedic answer from the Young Ones could be applied here.
Q: What’s a good thing for akathisia?
A: Ingesting one of many pharmaceutical products.
—
With so many products on the market that can trigger a whole host of serious adverse events, the answer would seemingly be, don’t take any product that can induce a, b, or c..
Of course, that’s simplistic advice and normally given after the offending product has caused the problem.
Same goes for withdrawal, PSSD, sleep problems, acts of violence, aggression, suicidal thoughts, suicide completion.
Sadly, these problems are often played down by Twitter psychiatrists and other key opinion leaders in the field with, “all drugs have side-effects”. It’s the cop-out of the century and really doesn’t address the issue. The same group of people often claim they warn their patients of such side-effects. There’s no way of knowing if this is true, however.
Even if they did inform patients of such side-effects, we don’t know if they throw caveats into the mix such as, ‘it’s very rare’, ‘it’s been reported in a small number of cases’, or ‘it doesn’t happen with this particular SSRI’.
—
The Patient Advocates
As you know, I’ve been around awhile. My history has all been logged on my blog and 2011 book. I’ve seen many changes in the field of advocacy, seen many leave the field after many years of hard work in getting the message out. There’s only a few of the ‘older crew’ left. This has paved the way for the newer advocates who, it seems, have the backing of some prominent figures. It’s those prominent figures (I won’t mention names) who tend to snub the work of the ‘old crew’. They may see it as outdated or, possibly, want to disassociate from those ‘loose cannons’ who, in the past, have called it like it is.
I’ve seen many take the softly-softly approach in the hope changes can be made. Meeting with the Royal College of Psychiatry, self-appointing themselves as the purveyors of safety officers. Probably dismissing the former ‘colourful’ advocates or ‘loose cannons’.
Nothing has changed. The RCPsych are still miles away from any form of empathy toward those harmed by the drugs they promote as safe and effective.
Don’t get me wrong, I, myself, thought I could change things when I met with the MHRA, on numerous occasions. I thought I’d cracked it once they allowed me time with their then CEO, Kent Woods. Promises were made but none were kept. My approach was different, I went in all guns-blazing and even ridiculed some of the key players back in the day. If anything, it prompted them to sit up and listen, albeit on deaf ears. Meeting with me, as they did, was nothing more than appeasement. (Keep your friends close but keep your enemies closer)
Things have changed with the numerous social media platforms on show today, they were in their infancy when I first started on this journey. Many PSSD sufferers now post their frustrations on Twitter and Facebook (the latter platform seem to shadow ban these days, at least with me)
I have a lot in common with the PSSD advocates, I like their style, they don’t pussy-foot around, they call a spade a spade and go for the jugular. For me, this can be far more effective than pandering to the likes of Wendy Burn or June Raine.
Before retiring, former Paxil activist, Rob Robinson, sent me an email. He told me to use humour, ‘they’ hate humour’, he told me. He got in touch with me some years later, via a third person, it was the eve of the Dolin v GSK trial. ‘Go get em’ was the message relayed to me.
With the newer advocates there seems to be something that didn’t exist during my early days as an influencer, there seems to be a lot of egos – in the main, ‘the old way was the wrong way and our way is the right way.’
Nothing has changed.
Accommodating those in power with softly-softly approaches is the wrong route. In essence, one cannot change the mind of anyone who, for many years, has been indoctrinated by the system. These people are lost causes, it’s like trying to understand the mind of a psychopath whilst using the logic of an empath.
I miss the days of the ‘older crew’ but am thankful that we all played a major role in getting the word out about the withdrawal issue and the nonsense that is the chemical imbalance.
People new to this game will cite others as being at the forefront of being the kings and queens of getting the truth out. Whilst I admire these people, I have to ask, where were they all those years ago?
Anyway, this may come off as a sour missive, maybe I’ve been too long in the game? Things is, I’ve had every possible slur thrown at me, the same slurs are still being used today but they are aimed at the newer advocates. History always repeats itself.
Plus ça change, plus c’est la même chose.
Martin says
So David do you not think SFN does not have a roll to play in pssd seems like there’s alot of people tested positive for it with skin biopsys, one thing I read from people collecting data on reddit was 14 out of 20 people tested positive with sfn. Seems to be people getting positive results alot for it. I know there was something that happened when you tried to volunteer for people before and it got sabotaged or something, but do you not think it would be worth another shot get ten people with pssd and you the rxisk money to pay for the tests, I’m sure if half of them came up positive it would show that maybe the whole pssd is something serious and would get better research, hard evidence is worth more than going on about big pharma I’m sure their day will come but is it not better to get evidence that cannot be ignored to start with?
Dr. David Healy says
PSSD is a peripheral neuropathy. Primarily a sensory one. There is an unquestionable genital neuropathy. It might in some cases just be genital but in lots of cases there is a wider peripheral neuropathy including elements of an autonomic neuropathy also.
In other definite peripheral neuropathies – small fibre neuropathy biopsies are negative. SFN biopsies if positive support a neuropathy diagnosis but negative results don’t prove anything – they don’t mean this is not a neuropathy
D
Martin says
So if its peripheral nerve damage what are the possible treatments if there is nerve damage? You said betrozipine could regenerate nerve damage but it’s not very easy to get. If you had a proven method that showed it was nerve damage what are the best candidates, is ivig not suppose to help with neuropathy and could promote nerve regeneration, there seems to be alot of talk about what big pharma and that it does not really help the people actually suffering at the moment if it is nerves to be regenerated what would actually be the best course of action to take?
Dr. David Healy says
Can you read the posts and comments. If I had a clear answer – you wouldn’t have a problem. No one would. If you can’t get benztropine there are alternate options to try. What role does IVIG play – not much in PSSD I think but i’m not ruling anything out
D
John says
Martin
This type of comment that you posted is literally what David is talking about in his blogpost. First, I thought that he was exaggerating with “semi-hostile”. But this is indeed frustrating. Please read the blogpost. THERE IS NO TREATMENT TO PSSD AND PAW. I know how painful it is, but we won’t get anything by trying to squeeze an answer out of David Healy.
He could be a fascade as well, but he is still the best bet out there. Every now and then he hands out careful and considerate medical advices on RxISK for FREE. He shares literally EVERYTHING he got to learn. He is willing to come up with a treatment / cure and to share it with the sufferers.
Sorry. It’s either this or what other doctors offer – telling you that you are delusional and that you need to swallow more poison.
John
Isabella says
Hi David
What do you think to perenzepine ? I know you mais an earlier post on a new topical version.
Any developments surrounding your opinion on this considering the growing number of neuropathy positive biopsies?
I myself would be happy to try perenzepine as an oral medicine, maybe even more so than benzotropine. While you cannot guide me to take any drugs i would like to consider your ideas before taking any.
Thanks
Dr. David Healy says
Isabella
These are good questions. There may be case for applying pirenzepine paste topically on genitals if you can get it made up as a paste – which a good pharmacist might be able to do for you. The problem with its oral use is that it is not absorbed into the body. This may mean that applies as a paste it is not absorbed either – which might be a good idea if it makes a difference genitally. Taken orally it won’t to genital skin or mucosa. But it may get to treat some of the autonomic nerves in the gut which may be helpful
David
Dr. David Healy says
This comment came by email rather than through the comment route.
Regarding some of the issues you raised in today’s blog, you offer something that most other doctors don’t even though it’s not an active intervention: you know more than the average doctor about what not to do and what might do more harm. And when to take a patient’s concerns seriously.
After 10 years of searching, I found a psychiatrist this month who has curiosity and willingness to engage in discussing the antidepressant injury. I am going to have to teach him many things. But I can already see that he still has the potential to harm because he could convince me he understands something that he actually does not have accurate information on.
Lastly, one of the insidious things about having an antidepressant injury is some of the less torturous effects are harder to link to the SSRI but after reading your posts I can now trace back the development of many eye issues that I had not previously attributed to the antidepressant (but now I am very convinced that it is linked).
These things I described above are things that you offer (from my perspective) so maybe that is why myself and many others keep approaching you. However, I realize. you cannot be everyone’s doctor. I am very grateful for all the ways Rxisk.org has helped me.
Mike says
Dr. Healy earlier this year I mentioned I got sexual dysfunction from Vortioxetine but I don’t have genital numbness. You told me I have an enduring sexual dysfunction but it’s not PSSD because I don’t have genital numbness. My symptoms are Ed, Premature Ej, Anhedonia and cognitive impairment. I forgot to mention not long after quitting Vortioxetine I had very bad insomnia which lasted weeks I could only get about 3-4 hours sleep every night and I was very sensitive to sound. Does this sound like I may have some kind of protracted withdrawl syndrome not PSSD? I am 2 year’s off of Vortioxetine. In my case is there a possibility of recovery? I can now get an erection but it is very weak and ED medication isn’t that effective. I have hard flaccid syndrome is there anything you can recommend that will improve this condition? And does it sound like I have Paws rather than PSSD?
Dr. David Healy says
Mike
If I had answers to all these we wouldn’t have a problem. Your doctor would have answers to. If we take all the effects that antidepressants can cause, we are dealing with one of the greatest problems in medicine today – perhaps one of the greatest social problems – up there to rival opioids and tobacco. There are a lot of people with vested interests in now accepting there is a problem which wouldn’t be possible to do if we knew what it is these drugs do.
If we knew how the drugs do what they do we would be able to tease out how close your problems are or are not to classic PSSD – at the moment they look somewhat different to me. More than that I don’t know and can’t offer answers for,
I can tell you when we were trying to get PSSD on the label of drugs 4 years ago, EMA were defending vortioxetine and the company are still working hard to get key opinion leaders and others to recommend it. Lots of people get PSSD from it but your condition is not the classic kind
D
Katie B-T says
What I have learned so far (about interacting with physicians)
I wrote “Doctors and Withdrawal from Antidepressants” and it was posted on Rxisk.org on 7/20/2015. Dr. D. fired me in an email on 2/26/2016.
Here is what I have learned since then:
Assess what the realistic goal of the interaction is. When interacting with psychiatry, I have a hierarchy of needs and the particular physician I am meeting with determines which needs will be possible to meet.
Hierarchy of psychiatry needs:
#1: Get scripts for the 4 chemicals I am dependent on to continue living.
#2: Speak up/be true to myself when encountering verbal mistreatment.
#3: Have a working alliance with a physician that has some healthy elements while also vetting any statements of medical information provided by the physician with my own research. Be realistic about what is possible in this working alliance.
Conceptualization: The pharmaceutical companies and regulators have done such an amazing job of suppressing truth that the majority of physicians and the general public believe the messaging that pharma provides. There are physician who know the truth and chose to continue to operate from a place of greed/human sinfulness. However, most physicians have good intentions but have the wool pulled over their eyes. What compounds the problem is most of the physicians who are unaware that they are under pharma’s spell have a fragility to them.
Fragility is the defensiveness/countertransference that turns into verbal (or worse) mistreatment when interacting with someone with a medication injury. It’s the responsibility of the physician to work on their fragility. It’s not the same that as white fragility but there are some parallel’s.
Guiding principles: It is not my job to convince a physician of anything other than to refill the scripts for the 4 chemicals I need to exist. To borrow from AA, lead with “attraction rather than promotion.” I can provide a physician with resources so they can learn more but I cannot control what they will believe.
If it is safe, (i.e. I have the logistic and emotional resources to deal with finding a new psychiatrist if this one fires me), I will not tolerate verbal mistreatment. I will make statements to stand up for myself rather than go along with the Stockholm’s Syndrome dynamic where I become the “good patient.”
Expressing anger to a physician is not effective.
Tips:
Use techniques to lower the temperature. For example, if referring to a previous psychiatrist, describe him as Dr. D. rather than use his full name.
Help the physician to re-group by focusing on the immediate topic at hand rather than feeding into statements they may make that are polarizing/extreme/all-or-nothing. Don’t have to ignore these statements but don’t give a polarizing statement back to them that makes it more likely for them to escalate.
Try to observe the process, not only focusing on content. Put mental labels/tags on types of verbal barbs that they are throwing at you, much like you would do when practicing mindfulness meditation. I.e. a physician makes a statement about how she thinks my small fiber neuropathy symptoms are from the “every reason in the book besides the actual reason, the antidepressant, line.”
Don’t turn to the physician for emotional needs in the context of the medication injury. Provide yourself with validation of reality. “What happened and is happening is real. It is a normal to feel scared/angry/get nauseous when I am spoken to in a harmful way. I don’t have to internalize what is being projected onto me.”
Read/learn more to better understand how and in what ways I am being poisoned by a chemical I have been stuck on for 30 years. The purpose is to make sense of my experience and to know what to look out for to protect myself for the future. Important to pace oneself because reading the material is triggering emotionally. Having a firm understanding of the issues also gives me more options with responding in conversations with physicians.
Need #3:
Need #3 has only become a possibility for me in the past month when I found a psychiatrist who has not been defensive, is curious/interested, and has a willingness to learn. He has been open about some things that he does not know. I think that we can likely process defensiveness when it comes up. After 10 years of searching, I located him and I don’t think I will experience verbal mistreatment from him. However, I will need to vet what he says because he is under pharma’s spell. It is not yet known what can become of this working relationship. My fantasy would be to read journal articles together.
John says
Dear David
Recently, you”ve done quite a shift on RxISK again, we’re eternally thankful. I wanted to bring something else to attention:
While almost everyone is taking antidepressants, I wonder about their potential interactions with the allergen immunotherapies that are becoming popular again. I couldn’t find any information about the interactions between psychotropics and the purified grass pollen extracts, along with their excipients. The professor assured me back then that there are no interactions but I’ve become increasingly skeptical of such assurances.
I have been proudly ‘sober’ from psychotropics for 23 months now. However, I also wonder if my monthly vaccines for grass pollen, which work on my immune system, might trigger some form of inflammation in my body. Wouldn’t it be unfavorable to induce inflammatory reactions in the body, while still dealing with the severe legacy effects of psychotropics? Could this exacerbate the persistent severe depression that endures after quitting psychotropics?
J
Dr. David Healy says
J
How am I supposed to know the answer to this? I and everyone else depends on people like you who are in this position to feed back what you think might be happening to you. It is certainly the case that the anti-allergic treatment montelukast can cause serious mood and mental state changes
D
La castrata says
Where did June Raine make the remarks about doctors being able to turn men into women? Is this on public record?
Dr. David Healy says
Several years ago, possibly two maybe three, after several years of being lobbyied, Ms Raine met with parents concerned about the harms – suicidality, sexual dysfunction – caused by isotretinoin (Accutane – RoAccutane) to their family members. She found it hard to believe that doctors couldn’t put this right – they can do anything these days even convert men into women etc.
This was reported back to me at the time by one of those there. I checked it with her and she confirmed it but I will check again.
David
La castrata says
Thank you. This would be a great thing to put out there while the Cass Review is fresh in people’s minds. That people who believe such non-sequiturs make it to the top of our regulatory bodies could go some way to explain why we’re in the mess we’re in.
Dr. David Healy says
I have been trying to put it out but people either don’t see how weird and shocking it is or don’t want to engage Anything you can do or anyone you know can do to help would be great
D