Jill Nickens – The Akathisia Alliance for Education and Research

This week on the Mad in America podcast we turn our attention to prescription-drug-induced akathisia and joining me to discuss this is Jill Nickens. Jill is the president and founder of the Akathisia Alliance for Education and Research, a nonprofit organization formed by people who have personal experience of akathisia.

The group includes biochemists, psychologists, nurses, attorneys, business owners, and others who have survived akathisia, suicidality and devastating personal losses due, in part, to a lack of awareness by medical professionals. They have come together to inform and raise awareness to help minimize the risk of developing akathisia.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Jill, welcome, thank you so much for taking the time to chat today for the podcast. To begin with, could you tell us a little bit about the experience of akathisia?

Jill Nickens: Hi James, thanks so much for inviting me to do the Mad in America podcast with you. I’m excited to have this chance to talk about akathisia and the work we’re doing at the Akathisia Alliance.

Akathisia is an extremely distressing neurological disorder that causes severe agitation, an inability to remain still and an overwhelming sense of terror. The symptoms are so horrific that it can make people instantly suicidal and it’s primarily caused by prescribed medications. The most common offenders are anti-psychotics, antidepressants, anti-nausea medications and antibiotics.

Akathisia is much more common than is being reported, this is primarily because the majority of doctors today know little to nothing about it, some have never even heard of it. It’s important to stress that akathisia is not a mental illness and it’s not anxiety. It’s like chemical torture. In the book Prozac Backlash, Dr. Joseph Glenmullen said that the Soviet Union actually used psychiatric medications in the Gulag to induce akathisia as a form of torture. Those of us who’ve had, it would say that’s exactly what it feels like.

So James, to give your listeners a better idea of what akathisia really feels like, here’s a description by an unknown author of a blog:

Now, that sounds dramatic, but anyone who’s had akathisia would tell you that that’s exactly what it feels like and that’s why so many people are taking their lives.

Moore: I was interested to read that your experience of akathisia was not related to a psychiatric drug, but an opioid. Is that correct?

Nickens: It is James. My story’s a little bit long and possibly a little bit unbelievable for some people.

I was prescribed an opioid pain medication and I took my first dose about midday and everything was fine and I went to bed. I woke up in the morning in sheer terror like nothing I’d ever experienced. It was like I was in a nightmare but I was awake. So, I was frantic, I was shaking, my blood pressure and heart rate were very high. This was before I had a chance to think about anything and I felt this way for the entire day but then by the next morning it was gone.

Then a few days later I started to get another migraine and so I took another dose and then a few hours after that, the same thing happened. That’s when I realized the opioid was causing this and it didn’t seem like it was a reaction to taking it, it seemed like it was a reaction to it wearing off.

Because I had tried all of the other migraine medications and they hadn’t worked, this has been going on for years, my doctor decided to send me to a pain management clinic. They put me on methadone because it’s longer acting and he thought that would avoid the rebound symptoms I was getting. So that worked and I felt great for a few days and then suddenly on about the fourth or fifth day, when that daily dose wore off, I got all those symptoms again.

I went back to my doctor and told him and he decided to raise my dose and then that same scenario happened again. At that point, I’d had enough of it, I was feeling suicidal and I took myself to a hospital because I knew trying to come off that was going to be very difficult. So I went to a hospital and asked them to help take me off the methadone.

For five months after that, I had severe symptoms that I now know are akathisia and I was pacing, I was rocking, I was so fidgety I could not be still. The terror was so bad, it was like being chased by a serial killer 24/7 and, to me, that was my worst symptom and that’s what was making me suicidal.

Finally, I couldn’t take it anymore. So I went to see a doctor and he saw my condition and looked at my records and decided to prescribe me buprenorphine which is also called Suboxone or Subutex, it’s also an opioid. He gave me the first dose in his office because I was quite a mess at the time and within two minutes of taking that, all of the symptoms went away. Everything, the terror, the shaking, the high blood pressure and heart rate, it was like night and day within two minutes.

So that worked well for a month or two and then I had forgotten to call for a refill on a prescription and ran out. So I’d been without it for I think just my first day when all the symptoms came back and they were really awful. In fact, I was out driving and got lost, I was in my own neighborhood, I had just gone up to the store and I could not get home. I knew where I was at that time, but I could not figure out how to get home, it was bizarre.

To fast forward, this exact scenario happened three times in two years because I was late taking this medication and even though I’d always taken it exactly as prescribed, I spent a couple of years being treated like a drug addict by doctors.

So anyway, the last time this scenario happened, I was out driving for about seven or eight hours, I couldn’t find my way home, I was in a very familiar area. I’d lived there most of my life, but I could not find my way home. I would stop and ask for directions, even though I knew exactly where I was and I knew exactly where I lived and they’d give me the directions and then I could only make it to the first turn, sometimes not even the first turn and then I’d forget.

So I was pulled over by the police for driving erratically and then taken to the hospital. In this hospital I had numerous seizures, I had episodes where my entire body would seize up like all my muscles would become rigid. I couldn’t swallow food, I couldn’t swallow liquid, I couldn’t speak at times, I couldn’t stand without fainting. At some point during these episodes of rigidity, I had apparently clenched my jaw so tightly that several of my teeth broke.

So after 12 days of observation, the doctors couldn’t figure out what was wrong with me so they transferred me out to a psychiatric facility. My diagnoses were multiple somatic delusions and failure to thrive with severe anorexia and they gave me a poor prognosis. So that’s the condition I laid in at the psychiatric facility for two weeks. There were times that my throat and chest muscles became so rigid that I couldn’t expand them at all to breathe. Just try breathing without moving your chest wall at all, it was nearly impossible. There were at least two times that I believe I lost consciousness and I definitely felt like I was dying.

Thankfully I managed to survive this, but eight years later I still have the debilitating terror 24/7 but my physical symptoms have improved a lot. I still have quite a bit of parkinsonism and I still need to be moving most of the time. I’m rocking if I’m sitting in a chair or shifting my weight from one leg to another while I’m standing, it’s visibly fidgety.

So that’s my very long story but I definitely count myself lucky that I survived and wasn’t prescribed a ton of other psychiatric medications. This is what’s happening to people, they’re being poly-drugged, they’re getting akathisia which is not recognized so doctors are piling on more and more medications that actually cause akathisia on top. Then it’s a nightmare for these people to get off of them.

For many of them, as soon as they make one small cut in their dose, the akathisia comes back which brings along with it, the suicidality, because it’s a nightmare. So these people are battling suicide for years and their families don’t understand this. They don’t want to die, but it’s torture.

Moore: Jill, I’m so sorry to hear of what you experienced. I wondered did it take you a long time to find out what the problem was, how did you go about seeking some kind of diagnosis?

Nickens: Well, James first, I should say that anyone who said at akathisia would probably tell you, it’s like getting hit over the head with a ton of bricks. You might not know what it’s called until you do the research, but it’s almost impossible not to know you have it.

But then the problem is it’s very hard to get a diagnosis for a lot of people. They end up being bounced back and forth between psychiatry and neurology sometimes multiple times because neurology is not recognizing it. So the neurologist is referring the patient back to psychiatry, where they will likely be placed on more psychiatric medications that can make the akathisia much worse.

Also if these people can’t get a diagnosis, they’re at a high risk of involuntary hospitalization because there is so much distress and now they’ve been turned away by neurology. So they’re feeling hopeless and they may make a passive suicidal statement, like ‘I can’t live like this anymore’ then they could end up getting forced drugged with the medication that caused it. This happens many times too.

Now this neurologist talks to the family and tells the family that this is all anxiety-based, they call it now a functional neurological disorder, which basically means the same as psychosomatic. Now, the family thinks if this is all psychological, this person can just think positive or do yoga, and this will fix it. But these things just won’t work with akathisia.

So this person, whose doctor doesn’t know they can’t take another medication because it would make the akathisia worse and doesn’t know that yoga and thinking positive won’t help, will lose the support of their family when they don’t appear to be trying what their doctor suggested. This happens over and over to many people. So now this person who’s already suicidal from akathisia ends up being abandoned by their family and ends up losing everything they thought they had to live for because they could not get a doctor to diagnose it. In fact, this exact scenario played a major role in the majority of our 26 suicides in one support group. We had a guy who had lost all of his family and all of his friends and he posted that he just needed a hug and then he took his life later that day.

This is also a huge issue. People everywhere are getting these horrific, torturous symptoms of akathisia that are making them suicidal. So they’re going to their doctor who doesn’t have any answers and then they have to go home and do their own research most of the time in medical journals because they’re looking for articles that their doctor will actually read.

So they take these scientific papers back to their doctor and say, this is what I have and the doctor will either virtually or even literally roll their eyes at them, tell them to stay off Dr. Google and quit self-diagnosing conditions that they don’t have when it’s likely that this doctor knows much less about akathisia than they do.

I went through all of these things. When I first got akathisia, I went to my doctor and he had no clue what was wrong. So I had to go home and I had to start researching. Thankfully, it was easier for me to research than it is for a lot of people because I was only taking the one medication, the opioid, when I got akathisia. So I knew that opioids work partly by increasing dopamine and so that’s where I started my research. From there, it was very easy for me to make the connection between what was happening to me and Parkinson’s including when I got lost for hours while I was out driving.

What also made my research much easier is the fact that what happened to me when I was late taking this opioid happened exactly the same four times. It took me a few months to maybe a year to figure out I had akathisia but it took about four or five years to get the actual diagnosis. I would hear that I wasn’t on any medications known to cause it and then they would start talking about my home life and how much stress I was under. So instead of this akathisia diagnosis, I was getting anxiety and the functional neurological disorder.

I finally found a very good neurologist who was willing to order some tests for me for Parkinson’s and according to this test, I met the criteria, but doctors would still misdiagnose me with a functional neurological disorder, completely disregarding these tests. So I had to figure out why.

I researched to find out which features during a clinical assessment would indicate a functional neurological disorder so on what basis these doctors are diagnosing it. I learned that what they were doing was trying to distract me to see if my movements would stop. For example, in the middle of an exam, a movement disorder specialist stopped and told me how much she liked my shade of lipstick and asked me what color it was. Then I realized what she was doing and that she was distracting me and I also realized that for a brief second or two, I did stop moving.

Then I had to go home and research to see if akathisia movements are distractable. I found a paper by Perminder Sachdev and another by Stewart Factor that state that akathisia movements are briefly distractible and briefly suppressible. Meaning if a doctor asks you to stop moving, can you do this? And most people with akathisia can do it for a brief second or two but even a second or two is torture for them.

Now, this is something I apparently need to address. The statements we’ve made about movement suppression during the exam are being misinterpreted and misquoted on social media. We are not saying that people with akathisia can control their movements for long periods of time. We are not saying this because it’s not true. Also, we know that if people’s families think they can control these movements for long periods of time but just aren’t choosing to do so, we know that they may lose their support and these people may even be abandoned. That’s the last thing we want to happen.

Our goal with making these statements is to get as many people as possible diagnosed to show how widespread this problem is. If you look at even the most current literature, many doctors and medical students all over the world today are being trained to diagnose movement disorders as psychological using these criteria. So if they test the patient and they stop moving when distracted they’re sent out the door and back to psychiatry.

This is why these cases of akathisia aren’t being diagnosed and why people are being bounced back and forth and why they’re losing hope and this is why we focus so much on this issue. It even seems like this should be explored further in the case of Parkinson’s disease. In fact, there’s a video on our website of Michael J. Fox, who has organic Parkinson’s disease, demonstrating the fact that he can suppress his movements very briefly on command.

So because akathisia is so dangerous and there’s such a high risk of suicide and violence, it’s very important for clinicians to learn about it and learn how to recognize it.

Moore: Thank you, Jill. In looking at some of the information online about akathisia, it seems that it’s often confused with anxiety. So some of the descriptions I’ve seen seem to make out that symptoms are mild, but people who’ve spoken out about it such as in the videos on the Akathisia Alliance website describe it in very, very strong terms. So what can we say about the comparison between anxiety and akathisia?

Nickens: Well, after battling akathisia alone for seven years, I found this wonderful support group on Facebook that was started by Josh and Amy Jensen. It was called Living with Akathisia and when I found this group, I found that there were, I believe at the time probably 700 people just like me and these people were suffering horrifically with the symptoms of akathisia. They’re also feeling suicidal and on top of that, they were in the process of losing their family, their friends, their jobs, their home. It’s heartbreaking. But what happened is all of these people band together and it really was amazing to see these complete strangers getting together and trying to help each other survive. So I realized we were all fighting the same battle, but we were just fighting it separately and we were losing and I thought that together, as one large group of people, we might be strong enough to win.

By winning, I mean shedding light on this problem that’s torturing and killing so many people that the majority of doctors don’t even know about. For example, I mentioned earlier that we had 26 suicides among our support group members and this is within the last two or three years. In fact, there was a guy in our group akathisia but his doctors didn’t believe him. They decided he was psychotic instead and had been court-ordered to take a medication we all knew would make it worse. He told us he tried spitting them out, but someone sat with them to make sure he didn’t. So after two weeks of being forced to take this medication, his akathisia did get worse and he did kill himself. That’s a true story.

Here’s another one. This is a post from a support group member from a few years ago:

Then two days later she posts:

Well, she managed to survive like this for 10 more days and then our support group administrator posted this:

That’s also a true story. So I started the Akathisia Alliance because this has to stop.

I’ve talked about the terror a bit already, but this is a very important point if we’re going to overcome this anxiety diagnosis. So the terror that people with active you should talk about is also sometimes referred to as a chemical terror because it’s not related to a thought. So in anxiety, people have this fear that something bad will happen, but in akathisia, it’s a feeling as if you’re currently experiencing a terrifying event. An analogy has been given as if you’ve been lit on fire and thrown out of an airplane without a parachute.

It’s that terror you would feel at the time that is going on in people with akathisia in their head. It’s like somebody is experiencing something terrifying. Another analogy has been being trapped in a box while listening to your children being tortured and killed and you can’t save them. So it sounds dramatic, but it’s as if you extract that brain chemistry that’s going on at that exact moment and inject it into the brain of someone who’s not having anxiety or depression was feeling completely normal, like a medical experiment and all of a sudden it has nothing to do with what’s going on in this person’s life. It’s just a chemical terror for no reason.

Moore: I see from the Akathisia Alliance website that you produce patient information cards. Could you tell us a little about those?

Nickens: Well, just having akathisia is traumatic enough but because doctors aren’t recognizing it, many people have to endure mistreatment, involuntary hospitalizations, forced drugging and sometimes even restraint. So we’ve made patient care information cards for people to carry with them that’ll inform first responders and clinicians about their condition and hopefully help them feel safer. They say there’s a well-documented risk of impulsive suicide and warn against administering certain medications that can increase this risk.

We also have an information sheet for patients to leave with their physicians. It contains some basic information about akathisia, how they can learn more and how they can best help the patient. We think that together with the patient cards, this is at least a small step in the right direction.

Moore: I was interested to see Jill that you were working on publishing a Journal of Akathisia. Can you tell us a little bit more about that?

Nickens: When I joined the akathisia support group, I was shocked to see the quality of research being done by these desperate people. Their knowledge of biochemistry, pharmacology, even the pathophysiology of movement disorders and because anyone can get akathisia we have like biochemists, psychologists, nurses, attorneys, PhDs, and at least one MD. Many people who are capable of comprehending peer-reviewed medical literature. Now, these people are likely more valuable in much better equipped to research than a scientist who’s never had akathisia.

Also, a biochemist battling suicide, for example, is far more motivated to find the answers than a scientist who can leave work, go home to their family and forget about their research till the next day. It’s like we were sent to the frontline in a war. So we’ve been there and back and now we’re going to report what we saw regardless of whether anyone cares to listen. So we’re going to start with publishing some case reports and reviews of literature.

Moore: I’m interested to know because I’ve seen disagreements on social media between professionals about akathisia. So is there an official definition of what akathisia is? Is it just a movement disorder or is there more to it than that?

Nickens: First, I need to say that we’re not at all claiming to be experts or the experts on akathisia and that everyone should agree with our thoughts on the subject. I’m just explaining our stance and what we’re going to refer to as akathisia because I think this is very crucial in helping more people get diagnosed correctly and therefore possibly helping prevent their suicides.

It’s also important as far as advancing research because you can’t find the answers unless you know what the problem is. So for our purposes, we refer to akathisia as Dr. Joseph Glen Mullen did. I quoted him earlier as saying there are two sides to akathisia. One is an outer visible restlessness that you can observe but the other much more important one is an extraordinary state of terror inside a person. So this is our viewpoint and we feel very strongly about this because too many cases of akathisia are not being diagnosed.

A big part of this problem may be that some people that get akathisia have a much less intense need to move than others and their movements may not be visible on clinical assessment. It is very likely that, throughout history, these people were misdiagnosed with anxiety or mental illness because their movements weren’t visible. As Dr. Glen Mullen said, these symptoms are the most dangerous. So if these symptoms are not included in the definition or description of akathisia, a few outward signs will continue to be misdiagnosed and mistreated.

So although the term akathisia can be loosely translated as an ‘inability to sit’, it was coined in 1902 based upon observation of physical restlessness in these patients. And it’s likely that for many decades later the other symptoms are attributed to mental illness or anxiety. So we think a good way to better define akathisia is by studying people who had no history of mental illness or anxiety, had never taken a psychiatric medication and were taking no other medications when they had the sudden onset of akathisia from one IV dose of an anti-nausea medication.

So this removes the question of whether their symptoms were due to psychiatric drug withdrawal, for example, or worsening of a mental illness. Now, we’ve actually done this already and found that each of the 22 people we questioned reported exactly the same symptoms. They had the sudden onset of agitation, a feeling as if they wanted to rip out of their skin. They had the intense terror and these symptoms were so bad that at least two people said they wanted to rip out their IV and run and jump off the roof of the hospital.

So there’s nothing subtle about this, but the problem has been that throughout history, doctors have not listened to or believed their patients when they say this is not anxiety. Now because of the very high risk of suicide and violence, we think it’s much safer to have too many people diagnosed with akathisia than not enough. So for these reasons, when we refer to akathisia, we will be referring to the symptoms, the universal symptoms described by the people I mentioned earlier, who had no history of mental illness, had never taken a psychiatric medication and got akathisia suddenly while being given an IV dose of an anti-nausea medication. This also falls in line with Dr. Glenmullen’s description about there being two sides to akathisia.

Moore: Was there anything else important to share with the listeners?

Nickens: I want to leave you with one final story that’s an example of what’s happening all over the world because akathisia is not being recognized. Now, thankfully, this story didn’t end in suicide, but it very well could have.

This was posted by a member of an akathisia support group. He had been prescribed a benzodiazepine to treat his undiagnosed akathisia symptoms:

Now, as horrific as that sounds, it is not at all an isolated case. In fact, the majority of people, the thousands of people in the akathisia support groups, have similar stories. And it’s primarily because their doctor did not recognize or did not even know about akathisia. So please clinicians learn about it so these stories stop happening.

So finally, James, I can’t stress enough how horrific akathisia is, how widespread it is, how hard it is to survive and how much these people are being harmed because clinicians aren’t diagnosing it. And on this note, I would like to plead to any physicians who have experienced akathisia themselves to step up and help us. You know there’s no mistaking akathisia and you know it’s not psychological. Our doctors are not listening to us, but they will listen to you.

So I hope I’ve gotten the point across to the listeners that akathisia is a chemical torture that can instantly make people who are not depressed take their own lives and it can happen to anyone. So please learn more about it by visiting our website where we have a downloadable comprehensive guide to akathisia.

And lastly, I would like to honor our many friends who didn’t survive and offer our condolences to their families.