A Board Member’s Story
MISSD Board Member Cindy Klinger shares her family’s story and what’s helped her move through the grieving process on Shelby Forsythia’s podcast, Coming Back. Listen here.
Photo by Liz Scheiner
International Reach
We received this note from a Chinese teenager. It is amazing and touching to see how our work at MISSD is reaching people all over the globe, and having an impact on so many. Thank you for your continued support! Printed with permission:
Dear MISSD,
Hello,
I am a Chinese girl. My English name is Barbara. I’m 18 years old this year. I’m a high school garden 12 student. Originally, I am going to take the college entrance examination this year, and I will be admitted to a university which is in line with my actual level. However, because of misdiagnosis as schizophrenia, after taking medicine, I was beginning to suffer from the akathisia.
When I first have akathisia, it’s time is 22 March this year. First of all, I feel chest pain, dizziness and nausea. Second days, the disease increased, I started to panic endlessly. Every time I tried to sit or lie down, an inner fear and an aching chest prompted me to stand up. However, this does not alleviate…over and over again, every second is suffering.
When I went to see a doctor, the doctor here didn’t know the disease, and told me that I was just stressed out and relaxed. But this feeling is completely out of the control of the brain. The tension is different with ordinary. During my illness, the uncomfortable description that I had whenever I went out made me want to be home as soon as possible. When I came home, however, the pain made me want to run out of the door at once…Then, my chest pain, legs itch, have a kind of unspeakable suffering brain, feeling the world is spinning. Only sleep can set me free. I can’t stop walking when I wake up. I can’t lie, I can’t sit, so, I thought of death, and I used my kitchen knife to pull my arm again and again. Want to jump of a building, but lack of courage.
Once, when I was in great pain, I said to my father, “Dad, I’m only eighteen. I don’t want to die!” The disease is a side effect of antipsychotic drugs. It is so rare in China that doctors don’t know it. My parents sometimes get impatient with my illness and get angry and ask me what witchcraft I have? I felt a double pain in my body and mind. When I was ill, I shouted again and again to ask her to give me the medicine, but she refused to give it to me!
I’m really scared. I think I might have to be human. I’m afraid the pain that I can’t describe is with me all my life……Until one day, a young doctor told me it might be an extrapyramidal reaction, and she told me to get rid of the glucose water.After three days of glucose and water, my disease was relieved, but no doctor could say exactly what was wrong with me. After that, the doctor asked me for a consultation and told me there was no mental illness, and my previous emotional instability was just a simple emotional disorder.
I was on the first day of discharge and knew about the akathisia disease online, and it was in perfect agreement with my symptoms. In China, only a few documents point out that the disease is often mistaken for increased schizophrenia, not only without effective treatment, but also aggravating akathisia.
Before seen several doctors, gave me some antidepressants, gave me some antipsychotic drugs, my disease not at all. For the first time I tried to despair, as if only suicide.
Fortunately, after over three months of struggle, the akathisia completely disappeared. I didn’t know how to treasure my normal life before, but akathisia told me how happy it was to sit down and do one thing in peace!
When I was ill, I had difficulty breathing, and I could hardly do anything. Now, my classmates have been admitted to their favorite university, and I have to answer because of illness.
When I’m well, I’ve been looking for information about akathisia, but our country has only a small number of medical papers, and there is little room for universal data.
I then browsed through foreign websites and found that there was a wealth of akathisia data and even popular video materials. I feel very happy, I think, it is the gospel of akathisia patients.
I’ve been trying to find a community about akathisia, and today I’m lucky to find MISSD. Just experienced this disaster, my desire is to hope more Chinese understand akathisia. Correct prevention and treatment.
I am glad to meet you, MISSD, I have a small wish here, I wish you the website Yuebanyuehao, recommendations can be translated into many languages, so that people around the world know more about akathisia, to avoid akathia torture.
Ciao,
A Chinese girl,Akathisia
Zhang Fengyi
July 28 2017MISSD谢谢你，遇见你是我们的幸运
July 28 2017MISSD谢谢你，遇见你是我们的幸运
World Benzo Day #WorldBenzoDay
Today is World Benzodiazepine Awareness Day, a day that seeks to raise global awareness about Benzo dependence. These drugs can cause adverse effects as well as intense withdrawal symptoms, which can potentially last for years.
MISSD is not anti-drug but supports awareness of some of the dangers associated with Benzo medications, as they have been associated with akathisia.
For more information, visit http://w-bad.org, which has handouts, events, videos and much more for both lay people and professionals. You can also get involved on social media.
Have you or a loved one experienced a side effect of withdrawal symptom from a Benzo drug? Let us know here or email us privately if you’d like to share your story.
Akathisia Commercial: Have you Seen It?
Have you seen the Vanda Pharmaceuticals commercial that focuses on akathisia?
We’re glad to see akathisia awareness getting attention. Although the commercial focuses specifically on the disorder being connected to schizophrenia, we know it of course can be associated with many other medications and health issues. What do you think of it?
MISSD at the Naomi Ruth Cohen Conference
MISSD set up shop at the 2017 Naomi Ruth Cohen Conference this past weekend to educate mental health providers and practitioners, educators, the public and anyone interested in mental health and wellness about akathisia and potential side effects of psychotropic (and other) medications.
Held at Beth Emet Synagogue in Evanston, this year’s theme was “Raising Resilient Children: Prioritizing Their Mental Health.” Educational sessions focused a lot on ways to reach children and young adults, and addressed some of the unique concerns they face and that can affect their mental well-being.
We spoke to a wide range of people; it was an inspiring event and we thank them!
Could Chris Cornell’s Death Have Been Caused by Akathisia?
http://www.rollingstone.com/music/news/chris-cornells-wife-issues-statement-w48317
Photo by Rolling Stone
The SSRI Wars
A short but well summarized article about how MISSD founder Wendy Dolin and advisor Kim Witczak turned their grief into action.
More About Wendy’s Victorious Trial in the News…
If you’d like to read more about MISSD founder Wendy Dolin’s victorious trial against GSK, here are several articles you might find of interest:
http://www.washingtontimes.com/news/2017/apr/20/woman-wins-lawsuit-against-drug-company-for-husban/
http://chicago.cbslocal.com/2017/04/21/jury-awards-3m-to-widow-who-sued-drug-firm-over-husbands-suicide/
British Medical Journal article
Check out this recent article in the British Medical Journal:
US drug regulators should consider adding adults to
SSRI suicide warning, says campaigner
Ed Silverman
Millburn, New Jersey
A British doctor who campaigned for the public to be warned about increased suicide risk in young people taking
antidepressants has said that US drug regulators should consider including adults in warnings.
David Healy, a psychiatry professor at Bangor University, called for the warnings after GlaxoSmithKline (GSK) was ordered to
pay $3m (£2.34m; €2.75m) to the widow of a US man who killed himself shortly after starting generic paroxetine.
The jury in the case of Stewart Dolin, a 57 year old attorney, concluded that GSK had failed to properly warn the public about
the increased risk of suicide when taking paroxetine. The jury reached its verdict after lawyers for Dolin’s widow, Wendy,
presented evidence in the Chicago federal court suggesting that GSK knew that paroxetine posed a risk to adults but had
concealed or manipulated data.
Dolin stepped in front of a train in July 2010 shortly after starting a generic version of paroxetine that was sold by Mylan
Pharmaceuticals. Mylan was originally named in the lawsuit but was later dismissed because of regulations and a Supreme
Court ruling that a generic company cannot be sued if the brand name company does not first change product labelling.
Warnings about the increased risk of suicidal thoughts and behaviour in children and young adults were added to the labels
of antidepressants in the US and Europe more than a decade ago.
In the US, however, labels do not warn of these risks for anyone over 24 years old. Many consumers have tried to hold drug makers responsible for suicides in adults without success. But the legal team representing Wendy Dolin argued that GSK had artificially inflated the number of suicides and suicide attempts that occurred among people who were given a placebo during clinical trials of paroxetine. They said that this alleged move made the antidepressant look better by comparison, since it appeared to minimise the risk of suicide associated with the drug.
The lawyers also argued that GSK had used averages for all selective serotonin reuptake inhibitors (SSRIs) to demonstrate
that paroxetine did not raise the risk of suicide in adults aged over 24. Court documents also indicated that paroxetine
displayed a much higher risk than all but one of the SSRI drugs. Wendy Dolin declared the verdict “a great day for consumers.”
After the verdict she told the Chicago Tribune, “This for me has not just been about the money. This has always been about
awareness [of] a health issue, and the public has to be aware of this.”
Healy, who spearheaded the campaign to upgrade suicide warnings on antidepressants and testified as an expert witness
on behalf of Wendy Dolin, said that the findings in the case should prompt the US drug regulator to review the evidence on
SSRIs and suicide risk in adults.
“When it becomes so clear cut that a jury finds there is a problem, it suggests the evidence is strong enough to look at
the issue,” Healy told The BMJ. “If it’s that clear to the average man on the street, and the FDA [the US Food and Drug
Administration] doesn’t do something about it, we have an odd situation.”
GSK, which markets paroxetine under the brand name Paxil in the US, has said that it will appeal the verdict. “GSK maintains
that because it did not manufacture or market the medicine ingested by Mr Dolin, it should not be liable,” it said in a
statement. “Additionally, the Paxil label provided complete and adequate warnings during the time period relevant to this
lawsuit.”
GSK added, “The scientific evidence does not establish that paroxetine causes suicide, suicide attempts, self-harm, or suicidal thinking in adult patients. In 2007, FDA revised the labelling for the entire class of SSRI drugs (including generic paroxetine and Paxil). The label includes statements that studies did not show an increased risk of suicidality (attempts or ideation) in adults over the age of 24, and that there appeared to be a protective effect in adults over 64.”
1 Eaton L. Regulator restricts use of SSRIs in children. BMJ 2005.www.bmj.com/content/
330/7498/984.2.
Published by the BMJ Publishing Group Limited. For permission to use (where not already
granted under a licence) please go to http://group.bmj.com/group/rights