Wendy Dolin – Making Akathisia a Household Word

James Moore
23
2341

This week on MIA Radio, we interview Wendy Dolin founder of the MISSD foundation. MISSD stands for Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin.

In 2010, Wendy’s husband Stewart Dolin was prescribed Paxil (paroxetine), a selective serotonin reuptake inhibitor (“SSRI”) for mild situational anxiety. Within days, Stewart’s anxiety became worse. He felt restless and had trouble sleeping. On July 15, 2010, just six days after beginning the medication, following a regular lunch with a business associate, Stewart left his office and walked to a nearby train station, despite not being a regular commuter. A registered nurse who was also on the platform later reported seeing Stewart pacing back and forth and looking very agitated. As a train approached, Stewart ended his life.

Founded in 2011, MISSD is a unique non-profit organization dedicated to honoring the memory of Stewart and others by raising awareness and educating the public about the dangers of akathisia. MISSD aims to ensure that people suffering from akathisia’s symptoms are accurately diagnosed so that needless deaths are prevented.

We Discuss:

  • That, by background, Wendy is a licensed clinical social worker and family therapist practising in Illinois.
  • How Wendy founded MISSD in 2011, one year after losing her husband, Stewart Dolin, to medication-induced suicide.
  • That Stewart was a loved husband and father and respected partner in the law firm Reed Smith.
  • How he went to his doctor complaining of some work-related anxiety and was prescribed the generic version of Paxil (paroxetine).
  • That tragically within six days of starting Paxil, he unexpectedly and uncharacteristically ended his life.
  • How the term akathisia was coined in 1901 by a Czech neuropsychiatrist.
  • How clinical trial data from the pharmaceutical drug trials are often manipulated to hide adverse effects including akathisia, meaning that the incidence is under-reported and the condition under-recognised by patients and doctors.
  • How because of this lack of awareness, akathisia is often misdiagnosed as anxiety, leading to incorrect treatment such as the prescribing of additional psychotropic drugs.
  • The fact that Government regulators and the mainstream media do not seem to want to discuss medication-induced harm including akathisia.
  • That the MISSD website includes testimonials from people who have experienced akathisia and that it is important to know that it can be experienced as purely internal (subjective) symptoms such as confusion or as external (objective) symptoms such as pacing, rocking back and forth or an inability to sit still.
  • That Doctor Roger Lane, a scientist who worked for Pfizer writing in the Journal of Psychopharmacology in 1998 saidakathisia can be so severe that death can be a welcome result
  • How akathisia can be so unbearable that it can lead to violence or self-harm and suicide.
  • That in addition to SSRI ‘antidepressant’ and ‘antipsychotic’ drugs, also implicated in leading to akathisia are drugs for acne such as Roaccutane, pre-surgery sedatives including benzodiazepines and anti-malarial drugs such as Mefloquine.
  • How in Canada there is a class action lawsuit raised by military veterans against the Canadian Government because of the number of suicides linked to anti-malarial agents.
  • That although MISSD is a non-profit organization that cannot give medical advice, readers can find a handout on the MISSD website that may help explain akathisia to treating physicians.
  • MISSD’s bold public initiative to put adverts in subway stations explaining akathisia.
  • Wendy’s participation in the UK Royal College of Psychiatrists International Congress in July 2019, where she discussed akathisia and the work of MISSD.
  • That MISSD has a podcast which shares experiences of akathisia.
  • Wendy points out that MISSD is not anti-drug, it is about awareness, transparency, accuracy in pharmaceutical labelling and the prevention of iatrogenic harm.
  • Wendy would like to thank the bloggers, donors and advocates who work to publicize adverse drug effects and support MISSD’s work.

Relevant Links:

Medication-Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin

MISSD on YouTube

MISSD Handout

MISSD Free one-hour Continuing Ed Course

Akathisia Stories – MISSD Podcast (Apple Podcasts, Spotify)

NYC Subway Ads Take Akathisia Out of the Darkness

Wendy Dolin Takes on GlaxoSmithKline And Wins — For Now at Least

Stewart Dolin’s Widow Loses $3 Million Verdict for Paxil Suicide on Appeal

23 COMMENTS

  1. Unfortunately, neither Big Pharma nor Big Time Psychiatry are going to be able to effectively treat akathisia, because it responds to properly administered manganese salts, for which there is no (nor can there be) patent to be gained to monopolize the profit.

  2. I took one paxil. I rocked in a chair non stop, I thought I was more insane than I realized. I stayed in that rocking chair because to get up meant I had to take my state out on something.

    My spouse thought my MI was bad.
    I never took another pill, because I knew the next one I would have to do something other than just rock.
    In hindsight, from those many years ago, I should have taken another and marched right back to who prescribed the poison.
    Even if you are warned about the effects, one has no reference to it, and no one can know if it can lead to death.
    People that commit a death against themselves, are simply getting out of the hellhole.
    Psychiatry has lots of blood on their slimy paws.
    I am old enough now to know how very convenient it is to give a drug to anyone other than the people who should be taking them.

  3. Sorry but psychiatrists – certainly including members of RCP – know full well about Akathisia causing suicide and all the other ‘side effects’. You seem to wish to place the blame on pharma and align yourself with psych. They are both corrupt and have much blood on their hands. Psychiatry is a eugenics movement that operates when the political conditions allow. I promise you, with the far right now in the UK, after the idiotic decision by whole sways of labour voters to go conservative re Brexit, things will not bode well for those locked up in a UK psych hell hole.

    RCP would only allow a person to speak if it some how served them… they are not going to allow someone to come knocking on the door for an audience and tell the real truth of the matter.

    Do you really wish to align yourself with this :

    “Psychiatrists were instrumental in instituting a system of identifying, notifying, transporting, and killing hundreds of thousands of mentally ill and “racially and cognitively compromised” individuals in settings ranging from centralized psychiatric hospitals to prisons and death camps. Their role was central and critical to the success of Nazi policy, plans, and principles. Psychiatrists, along with many other physicians, facilitated the resolution of many of the regime’s ideological and practical challenges, rather than taking a passive or even active stance of resistance [1]. Psychiatrists played a prominent and central role in two categories of the crimes against humanity, namely sterilization and euthanasia”

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1828151/

    Have you ever been in a psych ‘hospital’ and seen the way people are treated… worse than animals, locked up in cells and cages, abused by so called ‘nurses’ and ‘carers’ the constant day and night intense noise amplified by solid wall and floors? The callous disregard for human rights, denial of human dignity and basic human needs. Psychiatry has done all this and in full view of the UK regulator who only acted when the Whorlton Hall abuse was brought to light by the BBC… note the date: October 2019 and they reference the BBC program as background…. not from their own very many inspectors… what the heck were they doing?

    https://www.cqc.org.uk/sites/default/files/20191104_closedcultures_supportinginformation_full.pdf

    • ‘In the Netherlands 73% were euthanized by their own treating psychiatrist’

      ‘They have 60 traveling teams’

      https://youtu.be/QnTB1zsDXK0?t=2566

      “Within these clinics a group culture has emerged in which euthanasia is considered to be virtuous labour”

      Now ask yourself how many of these people had AKATHISIA but were clueless as to the danger they were in, went back to their GP and got ripped off one drug onto another or doubled the dose or another drug added on…. because THAT is what happens and THAT is what makes people toxic leading to strong suicide ideation. Once toxic on these drugs it is deadly to go back to a doctor unless you get lucky in Wales and David Healy turns up.

  4. I agree, akathisia should be made a “household word.” I was getting a physical a few years back at a teaching hospital, and got to play ginny pig for a student doctor in training. So it was a 2 hour physical. I had dealt with the teaching doctor the previous year, and he was intelligent enough to understand that it’s wrong to misdiagnose the common symptoms of antidepressant discontinuation syndrome as “bipolar.” And he understood anticholinergic toxidrome is not any of the DSM disorders, so he took the “bipolar” misdiagnosis off my medical records.

    Nonetheless, I do have some long run adverse effects of the prior psychiatric poisonings. I have had brain zaps, a common symptom of antidepressant discontinuation syndrome for 19 years and counting, primarily while I sleep. And I have some mild akathisia and dyskinesia, primarily taking the form of a wiggly ankle when I sleep.

    As this student doctor was questioning me, I gave her the medical etiological explanations for my symptoms. She was flabbergasted that a patient would be so knowledgable, the teaching doctor was loving terrifying his student with the potential medical knowledge of her potential new patients.

    Nonetheless, it was important I could medically explain my symptoms. Because had I not explained the etiology of my wiggly ankle, for example, that student doctor would have wanted to claim I had “restless leg syndrome,” and she would have wanted to prescribe a drug. And she did make the mistake of wanting to put me on a “safe smoking cessation med.” The doctor told her no, those are the same type drugs that caused my ongoing symptoms in the first place.

    My point is that doctors really should not speak a different language than the patients they treat, because this can very easily lead to miscommunications, resulting in malpractice. But since I doubt the doctors will change their language, it is important for us patients to work on learning the language that our doctors speak.

    Thank you, Wendy, for helping to educate the public about akathisia, an horrific, long run effect of the psych drugs. And my condolences in regards to your husband’s death.

  5. Thank You Wendy and James,

    I think most deaths from Akathisia could be prevented if prescribing doctors were accurately briefed on the condition, but they don’t seem to be.

    You also get the Dr Shipman Type Behaviour
    https://www.madintheuk.com/2018/08/a-disorder-for-everyone/#comment-49

    And the Regular Dreadful Headlines:

    Three children found dead in Dublin house are named:-
    http://www.rte.ie/news/dublin/2020/0125/1110797-children-deaths-newcastle/

  6. Since they are deaths that could be prevented by psychiatry, should we call the deaths something other than the convenient suicide?
    I am not sure how one cannot be anti drug, because psychiatry refuses to admit effects.
    Besides, if someone complained to a shrink about the effects, they would deny that the complaint was ever made. It’s not as if a dead person can defend themselves.
    So many suicides have happened due to drug harms and mind harms, psychiatry seems to benefit, because they still keep lying about the causes.
    Millions of kids that can’t be informed, are drugged. How can anyone remain pro drug and pro psychiatry.

  7. Psychiatrist don’t believe it even exists you report it because you are anti psychiatry,read too much and wont let them get on with their jobs and they give more drugs and start benzos to mitigate the effects. My experience exactly what was said to me it was the illness causing the 36hours constant walking … I don’t like the poster as it labels by putting violence first in the list not sure who it is aimed at it should just advise you not to take the drugs and don’t go to these ‘doctors’ simple …

    • Mad Mother,

      Treatment induced Akathisia was the worst experience of my life.

      Currently, in Ireland theres an Epidemic of Homicide and Suicide, by peaceful people with no original Mental Illness, who’ve been prescribed ‘anti depressants’ by their doctors for ‘modern day life stress’.

      When people on ‘antidepressants’ ‘Act Out’ the community is often alarmed and confused, and underlying serious mental illness is often promoted by the ‘experts’.

      If 15% of people in Ireland take ‘antidepressants’, this would translate into maybe 300,000 people. If even 1% of this figure were prone towards Acute Akathisia this would translate into maybe 3,000 people, and this is where the Epidemic comes from.

  8. Thank you Wendy and James for this deeply moving and inspirational podcast.

    We will: “MAKE AKATHISIA A HOUSEHOLD WORD”.

    We must make AKATHISIA AWARENESS an issue of public health priority.

    The sooner AKATHISIA AWARENESS information appears on the London Underground, the sooner medical students, future, and current prescribers, will have a greater chance to learn of the devastation caused to individuals, to families, to loved ones and to society.

    I would like to see AKATHISIA WARNINGS on the outside of psychotropic akathisia-inducing prescription drug packs, in the same style as lung cancer warnings on cigarette packs.
    The same for the other prescription drug classes that produce this concealed, life-taking and life-destroying ADR.

    The achievement of addressing the Royal College of Psychiatrists and inviting them to acknowledge the suffering, morbidity and mortality caused by AKATHISIA must have taken infinite courage and utmost diplomacy.

    It becomes bizarre when ethical, informed, members of on-line communities may be more knowledgeable than prescribers.
    Time for the latter to listen to, and learn from the former, more widely?
    Yes, they may have known something about it before, but didn’t you feel that this time someone listened?

    I do hope that they invite you back Wendy as the message may need repeating.

    What about our other Royal Colleges?

    If a patient with intense acute AKATHISIA reports to and re-presents to their prescriber, they, and their loved ones must known in advance that the AKATHISIA will not be misdiagnosed as “psychotic depression”.
    That toxic delusions will not be labelled as “Functional Psychosis”.
    That neurotoxicity does not become “pseudo-bipolar disorder”.
    That there are indeed recognisable, “inner” and “outer” features that can be accurately diagnosed and managed correctly, and with empathy, understanding and wisdom.

    Acceptance and acknowledgement of tardive akathisia is even more challenging, as with all psychotropic drug legacy syndromes.

    The “inner features”: – Changes in feelings, emotions and behaviours are likely assumed to be diagnostic of “Serious Mental Illness.

    Misdiagnosis is risk-enhanced by the intensity of writhing restlessness, and intense, overwhelming agitation. Overwhelming physical pain and suffering that I have seen cause tearing out of eyelashes, scalp and body hair, immediately misinterpreted as “self harm”.

    People with Adverse Drug Reactions (ADRs) must be protected from inappropriate detention and forced-drugging with further AKATHISIA-inducing poly-pharmacy which results in exacerbation of drug-injury and further multiple misdiagnoses: irremovable, punitive, incorrect, stigmatic labels-for-life.

    I had been a prescriber for some thirty five years without ever hearing this “word that dare not speak its name”.
    “Emotional lability” – “Hyperkinesis” – “Inner restlessness”- “Agitation” – aka AKATHISIA.

    Surely it is unacceptable that for both prescribers and prescribed, it still appears to take family tragedy, and devastating personal loss for AKATHISIA to become fully understood?

  9. Do people actually believe that providers don’t know about the effects?
    Awww poor shrinks, so uninformed, so in need of education.
    Ok then, if they are so uninformed, it must mean that they should not be selling drugs, or even practicing.
    Please, they know EXACTLY what the drugs do, why do I even have to say this.

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