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Let’s Raise Awareness
Have you been touched by akathisia? We are looking for an individual to share his/her story for an educational video we will be creating.
We are also looking for guest bloggers to share their stories on our blog. If you or anyone you know is interested in sharing your story to spread awareness for akathisia please contact Jenna at jenna@missd.co
The Agony of Akathisia: In their Own Words
It’s difficult for those of us who have never experienced the powerful sensations of akathisia, a potential but horrific side effect of many psychotropic medications, to truly understand what those afflicted have gone through. The words of people who have experienced it firsthand can give us a glimpse into the utter torture that it is to live with this dreadful disorder, which creates a sense of dread, restlessness and agitation like little else. Phrases like “a sense of doom,” “a living nightmare,” and “hopelessness for no reason” are just a sprinkling of descriptions people who have suffered through this disorder share. David Foster Wallace, a writer who took his life in 2008, explains the desire for death when afflicted with this condition this way: “When the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames.”
“The mechanisms that lead a drug to cause suicide are the same that produce violence. The first of these is akathisia. Akathisia is a state of increased tenseness, irritability, restlessness, insomnia and a feeling of being intensely uncomfortable.”
This accurate description does not fully capture how terrible the experience of akathisia can be. The following comments were posted on the internet by people about their experience of akathisia:
“I feel like I have worms crawling under every inch of my skin.”
“I can’t stop squirming, so sleep/rest is impossible no matter how exhausted I am…”
“My mouth felt like I was sucking on a battery; tingling, electrical.”
“The feeling of suffocation was worse; at the peak it felt like I was being burned alive. I couldn’t stop crying. I wanted to die, every fiber of my being wanted to be dead.”
“It was like a wave of sheer terror and panic. I would have done anything to make it stop.”
“has anybody experienced a sense of doom from their akathisia? When I get akathisia, it feels like it’s going to last forever and stay the same or get worse, that all that is or will be good for me has gone from the world.”
“It felt like someone close to me just died and I couldn’t stop crying. I’ve never felt such doom and hopelessness for no reason.”
“It was an anxiety so intense and deep-seated I thought I was losing my mind.”
“but damn, akathisia is a living nightmare, makes everything else I’ve suffered from up till this point look like child’s play.”
“There’s no sense of DOOM and DARKNESS like what is felt during Akathisia. It’s inexplicable. I knew if I didn’t just die from it, I would kill myself if it didn’t let up. I was so sure I absolutely had to die. Because I could NOT STAND feeling that way one more minute.”
“Yesterday I had a strong urge to kill myself not because I want to die but because I want to kill myself.”
Perhaps the best description of all was put forward as a comment on the Aug 3 RxISK.org post The Man Who Thought he was a Monster: Antidepressants and Violence:
The best description I have ever come across of why some people die by suicide which may go some way to help people understand – especially those angry, devastated and confused by the loss of a loved one to SSRIs – is by David Foster Wallace (who was treated for years with Nardil; some surmising that it may have been withdrawal from Nardil which led to his suicide):“The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’, can understand the jump. Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling.”
In his book Medication Madness, Dr. Peter Breggin discusses akathisia under the title “A Painful Dance of Death.” He describes akathisia as “a drug-induced neurological disorder that is known to drive people to suicide and violence, and to madness”*. He notes that “while studies of SSRI-induced akathisia vary greatly…the weight of evidence confirms that it is common.” He cites various estimates that range from 9.7 % of users to 25% of users.** The intensity of the condition can range from discomfort to agony. In his book Brain-Disabling Treatments in Psychiatry, he states:
“Patients suffering from akathisia often use electrical metaphors or descriptions such as “electricity going through my veins” or “shocks in my head”. Words like excruciating, torture, and indescribable are commonly used. Patients often say they would rather die than live with akathisia… these individuals seen to be describing physical phenomena, as if they are being tortured from the inside out.”***
Akathisia is a fairly common side effect of SSRI (and other) medications. In extreme cases it can cause such mental and physical agony that people are driven to do things they would not normally do.
*Medication Madness: A Psychiatrist exposes the dangers of mood- altering medications, by Peter Breggin, St. Martin’s Press, 2008, Page 15
**Ibid, Page 16
***Brain-Disabling Treatments in Psychiatry, by Peter Breggin, second edition, Springer Publishing 2008, Page 48
The A Word: A Personal Story
An incredibly strong, inspiring and wonderful person wrote in to MISSD. Below is their story. This story is authentic and ever so necessary to share. Together, by raising awareness, we can prevent needless deaths and suffering.
It’s very hard for me to write about this. I rarely ever talk about experiencing to what I usually refer as the “A word,” otherwise known (or sadly, not so known) as akathisia because it is that scary, and I didn’t (knock on wood) suffer to the extent that has driven others to take their lives. But it is precisely those people and their loved ones who drive me to write about a traumatizing experience such as psychiatric drug withdrawal induced akathisia.
I began taking alprazolam (aka generic Xanax), a benzodiazepine, when, after a serious bout of insomnia due to severe situational anxiety and treating my body badly during grad school finals, I sought help from my general practitioner. “I have to be able to sleep. This is insane. How will I ever graduate without sleep?” I thought to myself. “I can’t fail now. Not after three years of hard work. I can’t.” I wish that I had prioritized my health above all, but I can only move forward while recognizing that I did the best I could with the information I had at the time.
I just felt fidgety at first, but in what seemed like a blink of an eye, I could barely sit still. It wasn’t anxiety for its own sake (although it did cause me tremendous anxiety). It wasn’t just restlessness. It was an unrelenting feeling of wanting to crawl out of my skin and wanting to scream. I couldn’t concentrate or sit down long enough to watch over five minutes of a television show. Whenever I felt the dreaded A- word begin, I became noticeably anxious, irritable, agitated with loved ones. For me, exercising did not seem to help because my heart was beating so fast it felt like I was already running. Sometimes contorting myself in strange positions gave me temporary relief, but I’d have to lie there completely still, craning my neck, or else that creeping, seemingly unbearable feeling reared its ugly head again. That is, until my brain calmed down enough after taking my daily, as prescribed dose of benzodiazepine.
You see, I suffered from an oftentimes little known syndrome as inter-dose benzodiazepine withdrawal. This is when my akathisia was the most pronounced. My akathisia crept up in between doses of my “benzo” because my GABA receptors (the receptors that help the brain absorb the calming chemical, known as GABA) were growing tolerant the drugs I was taking. Little by little, I felt like I was Jekyll turning into Hyde. I could only pray it would go away soon.
I want to be clear about something: A. this does not happen to everyone. B. this should not happen to anyone. C. it can absolutely go away, and D. withdrawal induced akathisia is a different beast than medication induced akathisia. I have heard tale of people on anti-depressantsas little as a few days experiencing akathisia. It is my (nonmedical, personal) opinion that people in that situation might do best to stop their new medication at once. If the medication is something one has been taking for a long period of time and this is a new symptom, then a slower, more gradual withdrawal might be best, in my humble, nonmedical opinion. Bottom line: if you are experiencing this, do your research and figure out what is best for your own situation. Nobody knows your body better than you.
If one experiences akathisia as a symptom of withdrawal, it can become more complicated. Then it can become a waiting game. I was lucky in that my inter-dose withdrawal akathisia got better, even if some other symptoms got worse. I eventually had to switch to a different benzodiazepine to taper because alprazolam just wasn’t meant for me. Horrible symptoms on a steady dose of that drug were a sign that I had to do something differently.
I continue to taper my benzo down slowly. Sometimes hints of akathisia creep up again, and when that happens, I know my body needs a break. I try not to let it scare me, as fear can add fuel to any fire. This is easier said than done because fear is a natural response to these feelings. I just try to remain educated now. I’ve learned that any medication, which has an effect on serotonin or dopamine receptors seems to have a risk of akathisia tied to it. Usually one can spot the risk if “increased suicidal feelings” is listed as a side effect. That’s not to say one should never take any drug, which has that little disclaimer. You might be fine. Just be informed.
I wish I never had to learn about akathisia. I wish no one had to learn about akathisia, but I still maintain that information is paramount. One group of people who I wish knew more about akathisia is doctors. Doctors hear my plea: do not dismiss us when we complain of increased anxiousness, of feeling like we cannot stand what is happening to our bodies, like we want to jump out of our own skin. These are not the mad rantings of someone who has lost touch with reality. These words are the direct result of the storm happening inside a person’s body. Please, please respect that and educate yourselves on this dangerous, life-threatening side effect. If you can do nothing else, just learn about akathisia. It is devastating and it is real.
It is my hope that awareness of this deadly side effect increases tenfold. Everyone deserves informed consent.
~Angie
Wendy Dolin speaks in Copenhagen
Wendy Dolin (founder) speaks on Drug-Induced Akathisia in Copenhagen at a conference arranged by Professor Peter Gøtzsche, the founder of the Nordic Cochrane Centre.
While recognizing the essential benefits that medications provide, Wendy discusses the need for achieving transparency in reporting drug side effects so that akathisia becomes a household name. The hope is that when reactions occur after starting, stopping or changing doses of a drug, people will be aware of the side-effect symptoms and can get help.
Thank You!
Thank you to everyone who attended the 2015 Annual MISSD Fundraiser at the glamorous Studio Paris! It was a celebratory night filled with music, a lively silent auction, tasty small bites and plenty of drinks to toast great friends and supporters. The money raised this year allows us to continue spreading awareness locally, nationally and internationally through conferences, presentations and more. A very special thank you to NBC5 for their continued support and Allison Rosati for such a moving speech that called attention to our mission and the work we do every day.
