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.
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.
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.