This is our revised "
#Akathisia
for Clinicians" leaflet. True stories that illustrate the harm being caused by misdiagnosis are re-posted below.
Link to leaflet PDF for printing:
#NaomiJudd
clearly had
#akathisia
, and this was likely the cause of her suicide, not depression. She may be alive today if her doctors had recognized this. This poor woman was being chemically tortured and fought hard to survive it for many years. Her family should be very proud.
We've had another devastating loss. Dr. Judith Barr had suffered from
#akathisia
for several years. Although she was an M.D., Judith's doctors would not diagnose akathisia. Instead, she was diagnosed with a functional neurological disorder like most akathisia sufferers.
Judith
Stefan developed
#akathisia
in 2020. Since then, he has been repeatedly misdiagnosed, involuntarily hospitalized, and poly-drugged. This is Stefan today, three years later.
It is with a heavy heart that we must report the passing of Robert Balfe
@akathisiairl
, our former marketing manager, after a long battle with
#akathisia
. While his many friends will miss this incredibly kind man, we hope they will take comfort in knowing he is finally at peace.
Delighted to launch our Akathisia a Comprehensive Guide educational content
Contains general information about Akathisia, and also additional content specifically for clinicians
Designed to compliment our Patient Information Card
Please retweet
#Prescribedharm
#patientsafety
One of Robert's final posts - "Of all the psych drugs, of all the battles, BENZOS may be the one that will take my life....even the slowest of tapers is impossible...being poisoned by taking the drug, being tortured by trying to stop it...I’m on my knees and & begging for mercy"
It is with a heavy heart that we must report the passing of Robert Balfe
@akathisiairl
, our former marketing manager, after a long battle with
#akathisia
. While his many friends will miss this incredibly kind man, we hope they will take comfort in knowing he is finally at peace.
"I saw a neurologist and fought REALLY hard to get an akathisia diagnosis. She wouldn’t do it. She said I had FND which I knew would happen. I begged her to believe me, told her if doctors listened and learned it might stop all of these suicides." Karen took her life 6 days later
Kathleen Fliller is the sixth friend we've lost to
#akathisia
since August. She recorded this voice message shortly before taking her life. She had lost all of her family and friends because she could not get a diagnosis, so they did not believe her.
We've just lost another friend. No psych history. Rx'd an SSRI for CHRONIC PAIN. Hospitalized 4 times and dx'd w/ psychosis. Did his own research and learned he had
#akathisia
. No help from docs who'd never heard of it. He fought HARD for his 9 yo daughter, but now her dad's gone
Another
#suicide
. He knew he had
#akathisia
. We knew he had akathisia. Doctors wouldn’t believe him and
#force
-drugged him with
#Abilify
3 weeks ago. He fought hard (see screenshots), but killed himself Thursday. Tortured to death.
#BritneyAkathisia
Since pop star,
@britneyspears
,' discharge from a mental health facility in 2019, many of her 47 million Instagram followers have wondered "what went wrong," why "she seems much worse than ever before," and why she "can't ever stay still."
Please watch our
This is our new 1-minute video, "Drug-Induced
#Akathisia
is a
#SuicidePrevention
Emergency." The description contains an important note for clinicians about how they can help lower the disturbingly-high rate of suicide. Please R/T. Thank you!
I have posted the unedited and complete audio recording of the interviews
@DeccaJourno
conducted with my daughter Mikhaila and I prior to publishing her Sunday Times piece today:
Stefan developed
#akathisia
in 2020. Since then, he has been repeatedly misdiagnosed, involuntarily hospitalized, and poly-drugged. This is Stefan today, three years later.
We’ve just launched the Akathisia Alliance’s new website! Many thanks to
@NickWebb30
for designing it, and to
@russellsbaker
,
@elizabeckz
, and
@Snomer
for helping to make it happen. We hope you’ll like it!
Just released - “The Missing Link to Causation” report and video.
They contain evidence that psychotropic medications cause suicide, homicide, and mass shootings, and it’s not merely a correlation.
From the press release:
"An eye-opening report and video were released today
"If only we had listened more as she was lying on the ground, kicking and screaming at her dad, refusing to take those antipsychotics: “You’re killing me dad!! You’re killing me!” This scene will haunt me forever. She knew best. She knew."
#akathisia
Please watch and share our new PSA written & produced by Alliance member Marcello Romano. Narration by Chris Parnell (SNL) & members Robert Balfe, Lucinda Meyer & Elizabeth Beckman. Animation by Nic Sweet. Sound by Miles Kredich.
@AkathisiaIrl
@elizabeckz
This is an extremely inadequate and harmful description of
#akathisia
that should not be publicized. Doctors who believe this will think the subjective complaints are due to anxiety and can be treated with psych meds. As witnessed in the support groups, hundreds of people have
What does akathisia feel like?
Akathisia can be just an uncomfortable feeling. But for many people that feeling of restlessness translates into not being able to sit still.
#medicationsideeffect
In today's AA emails -
"My son just took his life.
He showed all the signs of
#Akathisia
Healthy until he was prescribed the “garbage meds” as I call them.
He was an amazing musician, brother and son.
Nobody listened to him.
I would love if you can add him to your memoriam."
(edited) TRIGGER WARNING!!! We recently lost a friend to
#akathisia
who took her life after being mistreated and abandoned by doctors and family. This thread tells her story and contains our new Guide for Family & Friends. Pls share to help prevent this from happening to others.
We're going to post about some of our fallen friends for World Suicide Prevention Day. Docs need to know these ppl aren't dying because they're depressed - they're being chemically tortured by meds until they can't bear it any longer. This is not rare. Pls learn about
#akathisia
Stefan developed
#akathisia
in 2020. Since then, he has been repeatedly misdiagnosed, involuntarily hospitalized, and poly-drugged. This is Stefan today, three years later.
In 2021, the people in the photograph below all ended their lives due to being unable to carry on suffering and enduring the horrific torture caused by the neurological disorder akathisia. 💔 I've been told my posts are depressing, that I need to think positive, and I've been…
A truly shocking comment by an ER doctor ("BoardingDoc") on
"...treated [the patient] with droperidol minus the Benadryl with the hope that
#akathisia
would set in. It did and she almost ran out of the ED. Win.... Literally the best part of my night."
Robert left social media in June of 2021 to focus on surviving
#akathisia
, especially for his little boy. He wrote a poem about how it had affected their relationship that's even more heartbreaking now that he did not survive.
"I told my mom that these drugs damaged my nervous system. The psychiatrist told her I should be fine since the drugs are out of my system, so she doesn't believe me. She asked my husband to open my mouth and force me to swallow each pill."
It's sad to know this is happening to so many people with
#akathisia
today - "I’m in a psych ward and scared if I refuse meds, they’ll be court ordered/injected. I’ve had one injection for crying hysterically and screaming I want to go home. It was such a mistake to come here."
Lisa got
#akathisia
from tapering off an AD too fast. Asked to be reinstated, but her doctor refused saying it couldn't be causing her symptoms because it was "already out of your system." Misdiagnosed with a functional neurological disorder
#FND
instead. Same story over and over
@9mm_smg
In addition to suicidal/homicidal ideation, SSRIs can cause akathisia. This is my wife in 2018. She ended her own life in 2021 due to, I believe, the torture that never ended after an improper taper from the drug.
It's so heartwarming to see people from all over the world with
#akathisia
banding together as a family to save each other's lives. For some, like Kathleen, they're the only family they have left. Sadly, there will be many more stories like hers until it is diagnosed correctly.
Kathleen Fliller is the sixth friend we've lost to
#akathisia
since August. She recorded this voice message shortly before taking her life. She had lost all of her family and friends because she could not get a diagnosis, so they did not believe her.
A 1974 study - "Why do schizophrenic patients refuse to take their drugs?"
"The reluctance to take antipsychotic medication was significantly associated with akathisia."
Imagine how many have been force-drugged since and how many have died by suicide to stop this torture. 😭
#Neurology
, please stop reprimanding people who say they have
#akathisia
for "researching on Google." They can find the same journal articles you read and research because they don't want to die. This has played a role in a shocking number of our
#suicides
. First, do no harm.
This is not anxiety - "Akathisia is like being doused in kerosene, lit on fire, tossed out of a plane at 30,000 ft while you free fall and watch your children strapped to railroad track with a train barreling at them and you can’t get to them. That's akathisia for me."
We just received this message. "A fighter also lost her life today, I am her partner and I wanted to share this news with you. She fought a lot but finally lost the battle. Her only desire was to help others suffering with
#akathisia
. She suffered a lot and no doctor helped her."
Kristopher Schneider - I'll never forget the day I went into my doctor's office and told him how horrible I felt coming off Ativan. He looked at me bewildered and said, "Kris, benzodiazepines are what we use to treat
#Akathisia
." That was when I realized how much trouble I was in
Suicide due to life circumstances is much different from suicide due to
#akathisia
that can cause suicidal impulses in anyone within seconds. It is not rare, just rarely recognized. Thousands in support groups today are trying to help each other survive it. We need help.
#Akathisia
is all too often misdiagnosed as many MD’s have never heard of it, do not know how to recognise symptoms and are unaware that it is a side effect of over 500 commonly prescribed meds- This lack of MD knowledge often leads to further iatrogenic injury and suicide
Robert Balfe wrote a blog about
#akathisia
that sums it up perfectly. He wanted us to share his work if he didn't make it, so please feel free to post anything he wrote. Thank you
@AnnaKin06551830
for finding this.
1/6 Jonny Bates – Jonny’s akathisia was misdiagnosed as psychosis, and he was prescribed an antipsychotic. Knowing this would likely make his akathisia worse, he refused to take it. He was then force-medicated. See comments for the rest of his story. 1/6
#akathisia
Many akathisia patients are misdiagnosed with FND. Many are diagnosed with severe anxiety too — to dispute this diagnosis is not to stigmatize conditions like anxiety. But to 1) challenge the way people with that diagnosis are treated and 2) correct misdiagnosis
Sorry I am getting so worked up about the functional neurological disorder (FND/conversion disorder) conversation. My only associations of it are with forced institutionalization, forced treatment, and misdiagnosis leading to severe disability, suicide or death.
****We Need Your Help*****
to promote our new website & grow our following on social media as we try & save lives through education & research on
#Akathisia
Pls follow us on Twitter,Facebook, Instagram & YouTube and invite others to also
#Prescribedharm
Our friend, Mark, died by suicide one year ago today. He got
#akathisia
from an SSRI prescribed for pain. If there's no evidence that depression is caused by low serotonin, is there evidence that pain is? If not, then people like Mark are being tortured to death for no reason.
On the
@Mad_In_America
#podcast
, we chat with Jill Nickens, founder of the Akathisia Alliance for Education and Research
@akathisiaalli
. It's a powerful account of the experience of akathisia and the difficulties getting recognition and support.
#Akathisia
@jordanbpeterson
@DeccaJourno
2/Your story
@jordanbpeterson
is one that we hear tragically on a daily basis,as we desperately try and raise awareness & research of Akathisia.That you were further injured by MD’s, misdiagnosed and left to die is an almost universal experience for those that develop
#Akathisia
We just received another sad E-mail: "My brother BEGGED the doctors for help. He BEGGED them. He said it was the medication, but they completely dismissed him. For 2 months, he told them he had constant thoughts of suicide, which was scaring him. He died alone on 4/14/23."
"My
#akathisia
is being blamed on "anxiety." Doc told me to stop rocking because it’s a “compulsion.” My family heard him say that, so they think I should be able to control it. I said I can’t and that’s the problem. Now they're gone. I’m done. Already in the ground."
This is a fantastic new article about
#akathisia
written by Samantha Long
@PolkadotZArt
:
"I knew only two people in a group of over a thousand where their symptoms were acknowledged, and many thousands of people were in a similar position. There was no difference between the
Until every doctor learns about
#akathisia
, thousands of people in support groups will not "go near drs" or call suicide hotlines because they're terrified they'll be "put in a psych ward" and given meds that make it worse.
@jonstoneneuro
@AlanCarson15
Sinead O'Connor: “When I became ill and left the last tour it was because I stopped the drugs too quickly and without medical supervision. The illness was in fact what happens when you don’t go about coming off these meds properly."
"The illness"...
#akathisia
? How many more?
Sinead O'Connor in 2013: "“They are extremely debilitating drugs. Tiring to the extreme. Ironically, extremely depressing. They can cause suicidal or self-harm type thinking. They can mess up your menstrual cycle very badly & cause you to be incapacitated for a week before.""
Posted in support group
“
#Akathisia
- Battery acid in your veins and a feeling of doom and terror like the world is ending and it’s your fault. Everything you knew yourself to be has been destroyed and replaced with something broken, toxic and unbearable.”
#Prescribedharm
The
#Akathisia
Alliance's new Patient Care Information wallet cards are now available for a $5 donation. We've heard docs are actually paying attention to them! This new version has a list of meds on the back that they should avoid prescribing. Pls RT.
Civil rights attorney, Mona Motwani - "I don’t know how to live like this. Indescribable feelings and sensations beyond human language. I am in a constant state of terror and human torture I can’t describe, and I’m getting worse. I’m literally being tortured 24/7."
"There are so many people that have died like me. There’s no help for us, and when you have no support, it’s suicide in itself. When you’re told you’re not sick. When you’re told you look fine. You can't see it, so nobody believes me."
#akathisia
#akathisia
From a support group - "I've had severe
#akathisia
for 4 years now and I'm still not believed by medical professionals. They say 'You only get akathisia from antipsychotics' and 'If you can tell me the difference between akathisia and anxiety I'll give you a peanut and a medal'"!
Marly Van Mullem - "I've had to endure hell due to misdiagnosis. I was tied up, injected and electroshocked against my will. I was thrown into isolation because I screamed in pain and fear and they didn't believe me. I've lost my home, fiance, work, family and friends"
#akathisia
We've just heard of another suicide due to psychotropic-induced
#akathisia
in this comment on our
#MissingLink
video:
"Thank you for this powerful video. I witnessed my sweet calm and patient husband become violent, agitated and impulsive while on Trazadone and Zoloft. After a
Just released - “The Missing Link to Causation” report and video.
They contain evidence that psychotropic medications cause suicide, homicide, and mass shootings, and it’s not merely a correlation.
From the press release:
"An eye-opening report and video were released today
Today is
#Akathisia
Awareness Day, as originated by
@MISSDFoundation
. We wrote a new flyer to hopefully get some much-needed media attention for this horrific condition. If it is distributed widely today, akathisia could be a news story tomorrow, so please share. Thank you!
@AllenFrancesMD
Amazingly most cancer patients warned by oncologists of risks of
#Akathisia
during treatment with antiemetic drugs for nausea
Our experience almost zero patients warned of risk of
#Akathisia
during psychiatric treatments
Cancer kills, and so does
#Akathisia
#Prescribedharm
#akathisia
is being misdiagnosed as functional neurological and factitious disorders (attention- seeking) because these desperate, suicidal people who cannot get the correct diagnosis will likely meet the DSM criteria for each. We've addressed this in our Guide for Clinicians...
Jason Ryan Edenfield talks candidly in this post about the horrific torture of living with
#Akathisia
“PLEASE DO NOT BLINDLY TRUST ANY DR WITHOUT DOING EXHAUSTIVE RESEARCH ON THE DRUG,IT'S SIDE EFFECTS,PERMANENT DAMAGES,RISKS & POSSIBILITIES OF DEATH.”
Another story of grief & anger on Facebook page-sons life stolen from mom by forced psychiatric polydrugging which led to
#Akathisia
Why are MD’s, Dr’s,nurses,coroner not making 1+1=2 in all these suicides?Or is it they just don’t want to talk about it publicly
#Prescribedharm
Another homicide because a psychiatrist abruptly stopped a med. This ignorance is killing people... "Psychiatrist Jogin Thakore testified during the trial that there was no evidence that olanzapine, when abruptly stopped, caused
#akathisia
." We have the evidence, just ask.
During the trial two defence witnesses claimed that the withdrawal of olanzapine caused him to suffer from akathisia - an inability to sleep, making him feel suicidal and pace up and down the unit constantly in the days before the killing.
@akathisiaalli
Mark Mahomes - "My body is tingling. Can't sit. Can't stand. Can't get any relief. My family said I should go back to work. They have no idea how bad this is. I can't get through to them because I can't describe how I'm feeling. I really can't do this much longer."
#akathisia
@catty_ross
She wasn't sure, but she took penicillin for five days about two weeks before the akathisia came back, so she thought that could have done it.
Augmentation of antidepressant with antipsychotic “also results in high levels of adverse effects,such as weight gain, sedation,
#Akathisia
, tardive dyskinesia,and parkinsonism” & 45% greater risk of death
#patientsafety
#InformedConsent
#Prescribedharm
Robert is desperately fighting for his life. This will continue to happen until every doctor learns about
#benzodiazepines
and
#akathisia
. It's tragic that people like him are being told to stop acting like they know more than their doctor when they actually do.
What does akathisia feel like?
Akathisia can be just an uncomfortable feeling. But for many people that feeling of restlessness translates into not being able to sit still.
#medicationsideeffect
If you have had
#akathisia
and had to do your own research to figure this out, please register on our website. We're applying for funding and want potential donors to know who we are and that we're capable of doing quality research. Thank you!
@jordanbpeterson
@DeccaJourno
Thank you for speaking out about.We fully understand the horrific trauma and terrifying fear of it returning. We have lost many friends to Suicide from
#Akathisia
-misdiagnosed and abandoned by Dr’s,family& friends -see our In Memoriam video in their memory
Thousands who are suicidal due to undiagnosed
#akathisia
are alone because no one believes them. They feel like it won't matter if they were gone. They try very hard not to give up, but this combination is unbearable torture. We've lost 14 friends this way in the last year.
Wendy, please help us by reading these short posts by people we lost and consider sharing them with your colleagues. There are thousands like them in support groups who have been battling suicide due to
#akathisia
, not depression, for years after the medication was stopped.
Did you know?
#Akathisia
induced by prescribed medication is classified into 5 different sub-types, according to its onset and how long it lasts.
These can aid the patient & Dr’s in deciding how to best manage the akathisia symptoms.
#AkathisiaInformation
#Prescribedharm
A note to all MD’s, nurses, psychologists etc.
🔹Akathisia is not anxiety!! Let us repeat that, Akathisia is not anxiety!!
🔹Akathisia is torture - severe restlessness, inner agitation & unimaginable terror.
🔹full details -
#Akathisia
#Prescribedharm
Please join Stephen's Voice in sharing information on Prescribed Harm Awareness Day. Part of the Alliance's goal is to end medication-induced suicide, an unfortunate fate for many akathisia sufferers.
One of the hardest things is watching a patient get sicker & further injured after presenting to a MD with symptoms
#Akathisia
instead of doing own research in effects/dangers of prescribed meds they trust an uneducated MD, who in ignorance misdiagnoses akathisia as worsening MH
One of the hardest things is watching a patient with a treatable condition get sicker because instead of medical advice they are following an alt-health provider's dangerous nonsense.
Shedding a tear for a colleague dealing with this right now. 😥
What does akathisia feel like?
Akathisia can be just an uncomfortable feeling. But for many people that feeling of restlessness translates into not being able to sit still.
#medicationsideeffect
Imagine if Medical Professionals & First Line Responders were trained in & believed
#Akathisia
and many other Prescribed med effects that cause many “suicidal crisis” ?
Most clinicians ignorant of
#Akathisia
& it’s role in
#suicide
See our guide for clinicians below👇
Imagine if we were compassionate and believed people in suicidal crisis
-if we stopped arguing with each other about how suicidal people felt
-if we listened, validated distress, shared hope and coproduced SafetyPlans and helped people build lives worth living
#SuicidePrevention
1/This lady was the mother to two 10 & 12 yr old boys and had a high profile career. Was polydrugged on antipsychotics, AD’s and benzo’s on psych ward, and diagnosed with GAD and psychotic delusions (fear of medications).
@_eleven13_
@AkathisiaIrl
I'm so sorry, Wren. I knew you were close because mentioned you often. He must be resting in peace because he couldn't have been nicer. Funny too! Such a sad ending for this wonderful man. 😣💜
Many suffering the torture of
#Akathisia
are misdiagnosed with a worsening anxiety disorder-leads to family & friends down playing severity of the intolerable symptoms - many become increasingly suicidal and sometimes hostile.
#Prescribedharm
AKATHISIA IS TORTURE, NOT ANXIETY