December 2, 2017 at 11:19 pm

Another Firsthand Experience and Description of the Terrors of Akathisia

A MISSD supporter from overseas recently wrote to us and described his horrific experience with akathisia after taking Zoloft. Many thanks to him for sharing this brutally honest description of his journey:

I’m keen to emphasize the fact that this is my own experience and everyone’s experience is different — symptoms vary. I wanted to share my experience so that people experiencing this don’t feel as alone as I did.

Akathisia, also known as motor restlessness, is an experience of inner restlessness. It’s a feeling of needing to constantly move which never dissipates, even with movement. It is associated with psychoactive medication, especially antipsychotics but also others, such as antidepressants. It is also associated with Parkinson’s disease, psychosis and bipolar disorder. It is often mistaken for restless legs syndrome (RLS).

My experience of akathisia began when I began to feel the “black dog” of depression start to return. I was noticing my motivation drop, my appetite disappeared, and I felt like life was meaningless. From my previous depressive episodes, I knew that I had to do something fast to prevent a self-perpetuating negative spiral.

Previously I have managed my depression using therapy alone, mainly cognitive behavioural therapy (CBT) techniques. However, I felt that this latest period of numbness required more than this, so I went to my doctor and asked for an antidepressant. I started taking this on a Monday, the 13th of November.

I know that I am sensitive to drugs — I’ve previously had very bad side effects from other medications. However, I didn’t expect that such a commonly prescribed medication could have such distressing effects.
Within the first few days of taking Zoloft I had side effects, most of which I was aware were common:
· Headaches
· Strange burning sensations on my arms
· Dry mouth, causing me to drink water excessively
· Slight chest pain
· Nausea and lack of appetite — I felt disgusted by food
· Increased sweating
However, I was most upset with the fact that I started to develop a relatively minor shaking in my right arm. This started from my second day of taking it (Tuesday). Over the next few days, this got progressively worse until my whole arm was shaking uncontrollably. I could only just prevent the tremor by concentrating intensely on my affected arm, but as soon as my attention shifted it would return. It also tended to stop with gesticulation, according to my friends.

As well as this tremor, I was unable to sit or stand still. This is what doctors refer to as akathisia. Every time I would try to, I felt a terrible pain deep in my chest which forced me to my feet. I felt a profound sense of anxiety, like something terrible was going to happen. I couldn’t sleep at all — I spent hours and hours at night pacing around my room. During the day, I would try to exercise to prevent the agitation from taking over. This would help for a bit, but as soon as I stopped moving the feeling would rapidly return.

I felt trapped and alone in my experience. I felt as if I was being tortured. The fact that it was induced by a drug treating my depression made it worse — I felt as if this experience had a psychological origin. I now understand that this is a neurological phenomenon likely caused by disrupted dopamine levels. Sertraline is relatively unique in the class of SSRIs in that it targets dopaminergic neurotransmission in addition to the serotonin system.

I carried on for four days with just 1–2 hours of sleep per night. I felt like a zombie or robot as I was going to my lectures and seminars. I tried to hide my symptoms from everyone — I felt very embarrassed that I had a tremor and I spent hours in my room on my own.

In addition to these disturbing physical symptoms, I developed unusual thoughts and subjective experiences. I had a fleeting image of cutting off my arm in order to stop the tremor and akathisia. I have never thought like that before so attributed it to the medication. I also felt symptoms of depersonalisation/derealization — I didn’t feel connected to my own body and felt like I was watching the people around me through a lens. I felt disconnected from other people as I talked to them. This further added to my feeling of agitation and distress.

I also became confused. For instance, I was struggling to find my way around a shop I visit every day and felt like I wasn’t fully “with it”. My balance was affected and I couldn’t walk straight. Something was very wrong — both physically and psychologically. All of these feelings got progressively more intense until I reached a breaking point on Thursday 16th November, just 4 days after starting Sertraline. The thoughts of self-injury were becoming more intense and I knew I had to do something. I was starting to feel unsafe on my own as I was disoriented, scared and confused. So I went to the A&E department of my local hospital.

In A&E, I was still feeling very agitated and disoriented. I worried that these symptoms wouldn’t go away and felt despair and hopelessness. The department was extremely busy and I felt like I was wasting their time. I felt very self-conscious as I was shaking so much — it felt like my whole body was vibrating. The receptionist I spoke to told me that “from personal experience, antidepressants can have starting-up effects”. I was well aware of this, but they’re not supposed to be this severe! I asked if I could go somewhere more private but was told that there was nowhere.

I had to wait in A&E for 2 or 3 hours to be seen by a triage nurse. I was told in an apathetic manner that since my symptoms weren’t “life threatening and we are extremely busy, we might not be able to do anything for you.” I was left in a room facing the waiting room for 20 minutes. It was at this point that I burst into tears — I was very distressed and the laissez-faire attitude expressed by the receptionist and nurse only worsened this. The door to the room was open and everyone waiting could see me in this state — I felt almost dehumanised.

N.B. I am absolutely not criticising all healthcare staff or the NHS — I have volunteered in the NHS and know how much strain staff and system are under. However, having been to the same hospital previously after breaking my knee, I feel I was treated completely differently for “physical” and “psychiatric” problems.
After seeking advice, the triage nurse took me to a side room where I stayed for the next few hours. After pacing around for a while and attempting to eat something, I was eventually met by a psychiatric nurse and SHO from the Community Mental Health Team. They conducted a psychiatric assessment and helped me to calm down. I was told that I had a “coarse resting tremor.” I was advised to urgently contact my GP and that I shouldn’t stop my medication without this consultation. I went to my GP the next morning and they switched me to a different medication (Lexapro/Escitalopram). I am also currently on a waiting list for CBT therapy.

Today, exactly two weeks later, I am starting to return to some sense of normality. Although I am still exhausted and am struggling to concentrate on my work, I am able to calm myself and prevent the restlessness from taking over. I am grateful that I was able to recognise my feelings and knew what to do. I am thankful that we have a public healthcare system that I can rely on when in need.

I wouldn’t wish this experience on anyone; I hope anyone reading this doesn’t have to. I hope that talking about my experience helps to raise awareness about medication-induced akathisia, which far too often leads to suicide. I think there needs to be greater awareness of this potential side effect. Many doctors are unable to recognise the signs of akathisia. Indeed, none of the healthcare professionals I have come into contact with had heard of it.

November 30, 2017 at 6:38 pm

MISSD Works With First Responders

Board members Wendy Dolin, Lena Dolin and Nikki Carvelli presented the MISSD akathisia presentation to first responders at the Wheaton Police Department. MISSD was present at the 6:40 am and 2:40 pm roll call. We are so grateful to the first responders who attended our program; they are on the front lines dealing with many crisis interventions. We were excited by the engaging conversations that will no doubt lead to spreading the word about akathisia and alerting professionals on what to look for and how to react. It was a true honor to be among such dedicated men and women. A special thanks goes to Sergeant Ryan Conway for facilitating this training session.

October 17, 2017 at 2:52 pm

Thank YOU, Friends and Supporters!

A huge and grateful thank you to all of our supporters who laughed and cried with us at this year’s annual MISSD fundraiser at the Montgomery Club in Chicago on October 12th. The turnout, silent auction and awareness-building were all great successes. Here’s to another influential and impactful year ahead!

If you haven’t seen our video about akathisia, please check it out; it’s just about a minute long!

September 27, 2017 at 7:10 pm

MISSD Advisor Presents on Drug Safety

MISSD advisor and national drug safety advocate Kim Witczak recently presented on medication safety. Watch the full video here.

September 11, 2017 at 9:08 pm

MISSD Founder Wendy Dolin’s Story Featured in the NY Times

325 million prescriptions for antidepressants were filled last year in the US, according to this recent NY Times article featuring our founder Wendy Dolin. That’s why it’s so important we continue to spread out mission of raising awareness about the possibility of developing akathisia.

The condition has been getting national and international press, and Wendy’s amazing trial win only increased the much-needed press around this current issue. Read on for more details and information about what made this case so compelling, so urgent and so unique.

Read the full article here. And read more information about suicide data being incorrectly reported in the drug trials here.

 

 

 

August 31, 2017 at 1:37 pm

New and Comprehensive Article Explains Akathisia Simply

The MISSD video about akathisia was featured in this recent article by MedPro, which succinctly explains the etiology, symptoms, extensive list of drugs that can cause the condition, treatment and more.

It’s a great article for explaining to friends, family members or institutions looking to understand more about this torturous side effect.

What are your thoughts? Share with us below.

August 18, 2017 at 3:40 pm

Save the Date!

We’d love to see you at our annual fundraiser…it’s a lively event with great food, friends, speakers, a silent auction and more. See below for details, and click on our home page to purchase tickets. See you there!

 

August 10, 2017 at 12:56 pm

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

August 4, 2017 at 5:02 pm

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 patient

Zhang Fengyi
July 28 2017MISSD谢谢你,遇见你是我们的幸运

July 11, 2017 at 7:47 pm

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.