*Please note that everything written on this blog is written by a mere concerned citizen, who’s just looking to share what she knows and help link people together, so they may help one another through a trying time. None of the material here should replace medical and/or psychiatric help, where it is needed. If you are in need, please contact a professional immediately. And remember, you are never alone, even when it may feel that way.
I am writing this recount of my experience several years after I went through it. Why? Because Akathisia was one of the most horrifying things I’ve ever lived through, and it’s taken me this long to be willing to relive it on any level. Why am I writing this? Because I think it will help others who are going through the same thing understand they are not alone. In my past I have struggled with anxiety and depression at certain points in my life, but never felt so terrified and alone as I did when I was in the grips of Akathisia.
So here’s my account, to the best of my recollection. I’m sure I will have forgotten some of the awful symptoms I dealt with in that 6 month span of time when it raged, and even the following 6 months when I was somewhere in between stricken and healed..but I will give you all the basics of what I went through.
It started with a couple weeks of nausea. I’m not sure if it was a flu, or stress or what, but I was having chronic, terrible nausea that wouldn’t let up. Eventually I found myself in the ER just looking for some relief and possibly an answer as to why I was feeling so sick.
Of course, as usual in any Western medical setting, they were quick to dismiss the why and go directly to meds. They told me they wanted to give me something to alleviate my suffering, so they hooked me up to an IV and gave me both Compazine and Xanax.
I immediately began feeling weird, but figured it was just the sedative effect of the meds. But quickly realized I was having a really odd reaction. To be fair, I had experienced some of the initial feelings with other meds in the past, but quickly things got out of control and I was off and running into a world of hell and horrible suffering that lasted for more than 6 months.
At first I felt really tired, figured I’d fall asleep a bit and wake up feeling better. I only wish that’s what happened. I got to a certain level of sedation, I couldn’t move or open my eyes, but my mind and body were writhing in misery and a level of agitation I’ve never felt in my life. I was desperate to get up and shake it off, get out of there, rip my skin off and leave the confines of what I was feeling, but I couldn’t.
I just laid there with my entire body feeling like it was cast in stone, mind reeling, shaking violently from the trauma of the drug reaction, but I couldn’t move or talk, other than shaking and moaning. I was in the beginning stages of Akathisia hell. I have no idea how long I laid there in this state. Eventually, I was able to stand up, barely. I couldn’t focus my eyes, could barely talk, but I was just desperate to get out of there. So I tried getting up to get dressed. This is when I collapsed on the floor in violent fits of gagging and dry heaving. No one that worked in that hospital bothered to come see if I was okay. Eventually I composed myself enough to get to the car, I just wanted out of there. I was still very out of it, but I had someone to drive me home.
I was even more nauseated than I was before I went in the hospital, out of it, could barely see or talk, still. Now just to let you know, I had taken Xanax several times in the distant past when I was dealing with panic attacks and general anxiety. So I can tell you, these effects weren’t from that. It was the Compazine. I had not suffered anxiety in well over 10 years before this event and had never reacted like this to anything in my life previously.
I got home and was feeling such a high level of panic and anxiety and overall sickness I was just out of my mind. I tried communicating to my roommate what I was feeling, but I just ended up on the floor in more violent fits of dry heaves.
Eventually I was able to sleep for an hour or two and woke up a little more ‘with it.’ But my vision was still terribly blurry. I remember feeling physically hungry, but I couldn’t eat. I felt more keyed up and crazy than I had ever experienced in my life.
This was the beginning of my year plus struggle to get any sleep, whatsoever. By the next day I knew I wasn’t shaking off the reaction to the meds and something was terribly wrong. My body felt stiff and rigid like nothing I had ever felt before. The core muscles down the center of my body, in my stomach and my neck felt like they were made of cement. That effect ended up lasting for literally months. Also, my vision was blurry on and off for months.
I could sleep only fitful bouts of minutes at a time. For the next 6 months I would only sleep, at most, an hour at a time, averaging literally only one to two hours a night, total. This lasted for 6 months and then the sleep issues lasted at a high level for about a year and a half, though at this point I was able to get two to three hours average a night. To this day I have terrible issues with insomnia, generally only able to sleep three to four hours at a time. This was never an issue for me before Akathisia. So at this point I have resigned to the fact that this is permanent damage from that drug. (I’m actually writing this paper at 4am and I have to be to work at 8am. So there you go.)
The most maddening side effects weren’t even anything I’ve mentioned thus far. The agitation and extreme, chronic panic were the worst of it. I was totally unable to sit still, for six months. I was totally unable to handle the stimulation (physical or mental) of the outside world, driving, talking to others, watching TV, listening to music…I couldn’t handle ANYTHING.
I lost 20 pounds, rapidly. Because I couldn’t stay still long enough to cook, or sit to eat. I couldn’t stand putting food to my mouth at all. I had previously quit smoking, but took it back up again. Smoking was the only thing my body seemed to ‘want.’ I barely slept, I barely ate, I just paced around my small bedroom and smoked. I couldn’t even handle the stimulation of going out to the living room or outside to our little yard. At the time I lived in a very small back house with only one roommate, who was gone much of the time. So, the trip from my bedroom to living room was literally only two steps and our yard was small, but cozy and private and I didn’t have anyone around to upset me or ask anything of me.
It didn’t matter though, I could find comfort nowhere. I was completely terrified all the time and the only place I felt remotely safe or comfortable was within the confines of my bedroom. Now let me digress again here; I have a degree in psychology and a great deal of knowledge about the subject, I was absolutely not suffering simple Agoraphobia. I had suffered a bout of Agoraphobia years earlier and know what that feels like. Totally different. Result is the same, but the feeling was very, very different. Akathisia anxiety is like regular anxiety/panic/agoraphobia 100-fold.
I was quickly to a point where I couldn’t even handle going to the bathroom, which again, was only maybe five steps from my bedroom. So I would go in a little portable potty. I probably don’t need to tell you that admitting this is humiliating, but I think it’s imperative you understand all the ways Akathisia can skew your reality and limit basic functioning. I’m not saying all of these things will happen to everyone who goes through Akathisia, this is just the ways it manifested for me.
When I tried sitting down I would constantly have to jump up and move around or I would use my arms and push myself back, over and over again. It’s hard to describe, it was a very odd feeling, but I was needing to endlessly move and adjust my body, constantly. I began ripping my hair out, literally. I also ripped at my skin. Now let me just tell you, I had no history of any of these behaviors before Akathisia. I didn’t have any history of serious mental illness, other than basic anxiety and a couple bouts of depression. And neither of these had caused anything remotely close to what I was now going through with Akathisia.
Having an extensive background in psychology, I absolutely knew this was a reaction, not my organic state, not simple “mental illness.” I knew too much to think my cheese was slipping off my cracker, but I didn’t know enough to understand what exactly I was going through.
Being an intelligent, curious person and desperately needing answers, I started frantically contacting anyone I could think of for information. I started with calling the hospital that did this to me. I got a young emergency medic on the phone and told him what happened. He told me he has seen this several times with Compazine and told me it would potentially last approximately 3 days to 3 weeks. I only wish he had been right. But he did give me crucial information and that was the word, Akathisia.
So I spent any moments which I could sit still, scouring the internet for information. I quickly found information on Akathisia, as well as, Tardive Dyskinesia. All the information out there purports that one suffers either one or the other, but that wasn’t my experience. I seemed to be suffering Akathisia to a great degree and elements of Tardive Dyskinesia to a milder degree. The most comfort I got was reading posts on askapatient.com. There I found MANY others who had suffered very similar reactions to Compazine. This gave me hope, as many of them recovered after a few days or weeks. However, that wasn’t going to be the case for me.
I found out that all of this is tied to the dopamine-serotonin balance in the brain and finally deduced that those who suffer Akathisia are already a bit off in this balance, that’s why some people can take certain meds with no reaction and others have wild reactions. It all depends on where you are starting from.
So now my focus was to balance out the dopamine-serotonin levels in my brain. I did hours and days and weeks of research on this topic alone. Everything I could find on this I put into one document, which is now my blog.
As I began having lucid moments of potential healing, tiny glimmers of light, I started talking to friends on the phone about my ordeal. None of them believed, or even bothered to try to understand what this thing, Akathisia, was. They ALL thought I was just stressing out. My closest friend told me it was peri-menopause, another told me it was anxiety and I just needed to get perspective. No one, and I mean NO ONE, understood whatsoever what I was going through. I was so frantic still, even after months of this, I talked at a million miles a minute and I know my speech was very incoherent. What’s really scary is, this is years later I sit and write this and even just recalling the whole ordeal is scrambling my brain in a way, as I try to recollect all the nuances of the experience. When I say this is a terrifying and powerful experience, I mean it, to the nth degree.
The only person who gave me any comfort, whatsoever, during all of this was a therapist named Scott. I spoke with him on the phone a few times during the course of my struggle. The one thing he told me that literally kept me alive and hopeful was this – “The body and mind want to heal. The natural state is for the body to rebound back to homeostasis. You will eventually heal.”
After months of Akathisia, all I could see was my own death. 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.” That’s all I ended up saying, over and again, when I talked with people – “I can’t stand feeling this way, not ONE MORE MINUTE!” And I lived at that level of extreme terror and agitation for months and months. I have absolutely no idea how I survived. I do know, now, though, that humans are much more resilient and adaptable than I ever previously thought possible.
Sadly, some people who suffer Akathisia give in to suicide. It’s terrifying, it’s tragic, but it’s the reality of it. I’m nearly positive the ones who give in and give up do so because they see no end in sight. It’s impossible to see the light at the end of the tunnel when you’re in the grips of Akathisia; because the level of suffering is unthinkable and relentless and to top it all off, the positive, hopeful, “feel good” portions of the brain are NOT firing properly, or at all, during Akathisia. This creates a sense of hopelessness and endlessness that’s inexplicable.
So – The main thing for ANYONE who is suffering Akathisia is to KEEP THE HOPE. Understand, even if it takes months, YOU WILL HEAL.
I was absolutely resigned to the fact that I was not going to heal and was going to “have to” kill myself. I needed respite so terribly bad. I thought death was the only way out. But every day, I clung to the research and the words of that therapist and kept plugging along; doing everything I could to boost my “feel good” brain chemistry.
Believe it or not, the turning point for me was once I paid close attention to my diet and endeavored on a total body cleanse. I know in the U.S. we are all taught to believe meds are the final mighty power for all that ails us. But at this point I was so terrified of ANY type of drugs; I simply knew I wouldn’t survive getting one shred worse, so I couldn’t risk taking anything.
I learned that sugar in any form, even fruit or juice made me rebound back to my worst state. So I began eating whole foods, mostly veg. I still didn’t have much of an appetite, even after months of suffering. But when I did eat, I was careful with what I put in my body. I began drinking green juice and taking vitamins. I started forcing myself outside for short walks in the sun, when I could handle it. I began taking salt baths to help detox my body, when I could sit still long enough to soak in it a minute.
All these little healthy habits I started forming began giving me tiny little moments of respite. I may have felt terrified and overwhelmed when I would go walk, but the physical activity would trigger the good brain chemistry and I found myself feeling a sense of hope, just a shred, even if for only 10 minutes, after I came back from the walk. In other words, doing the healthy habits didn’t feel good at the time, but I began noticing the positive side effects here and there. So I kept on that path.
I cannot begin to explain the level of despair and overwhelm that is Akathisia. There’s absolutely no way to begin to understand it unless you’ve been through it. It’s life altering to a great degree. I have helped many others through it since I’ve healed and I have yet to see someone get through it gracefully. Nearly everyone I’ve seen through this is at a high level of suicidality when in the grips of it. One person I was trying to help through it ended up being locked up in mental institutions for a spell (where she only got worst because of the awful conditions, poor treatment and further meds being forced down her throat), because the doctors did not begin to admit to, or try to understand, what she was going through.
Why? Simple. Because Big Pharma has them by the balls. Period. Doling out meds is their bread and butter. Period. I had to advocate for this person from across the country, via phone calls, to help get her released from this mental ward. They considered her non-compliant because she was so restless, agitated and unwilling to take more meds. The scariest thing was this — They seriously had no clue what she was going through! – Most of the nurses and doctors I spoke with truly had no idea what Akathisia even was!!! They were working daily, in a mental hospital, doling out psych meds by the handfuls and they had NO idea what I was even talking about! I was actually scared we were not going to get her released before she ended up dying. She was at that point, so very sick and the inhospitable surroundings were the straw that broke the camel’s back for her. The doctors were adamant about having her try more and more meds. She almost just gave in, because she was exhausted and so, so sick. But she didn’t and we got her released a couple weeks later.
Only once she got back home did any level of healing begin. It was a painfully slow process and it was nearly impossible convincing her family what she was going through was a real, long term side effect from drugs, and that she would eventually heal, but they stuck by her just enough that she was able to get the time and space to heal. And she did. In her case, she went in for a simple surgery and came out of anesthesia with the Akathisia reaction. (Anesthesia for a surgery is almost always a cocktail of all types of meds and many people encounter Akathisia post surgery because of this.)
Several lose their jobs because of Akathisia. There’s absolutely no “fighting through it,” like one might be able to with other illnesses or diseases. With Akathisia, you are simply down for the count when in the grips of it. Some people, once they get through the initial roughest part, are able to start resuming some level of activity, but they do so with great suffering and misery. It’s only once true healing begins, weeks, maybe months, down the line that you are able to get your head sorted out and begin functioning comfortably again.
In my case, once I became coherent enough to speak to anyone about this and make any shred of sense, the only people open to the reality of a long term drug side effect and empathetic to the suffering that is Akathisia were alternative healing practitioners and that ONE therapist.
Akathisia is hidden from the public, and even physicians, by Big Pharma. They absolutely do NOT want the public knowing the severity of risk associated with their drugs. Insidious, isn’t it?
I’m not paranoid, I’m not a conspiracy theorist, never have been. I’m simply stating the facts. Do your research, or have someone do it for you. But I strongly urge you to GET THE FACTS. Be an informed consumer from this day forward. If you don’t look out for your own safety and well being you may find yourself a statistic. It’s scary, but true. The drug companies run this country. If you don’t protect yourself and find a healthier, more natural way to live, you may end up another one of their victims.
Please, if you, or someone you love, is dealing with Akathisia – Get proactive. I’m not saying it’s your job to fight ‘the system,’ honestly, the drug companies are too powerful to fight. It’s a losing battle. Also, I know when you’re in the grips of Akathisia, you have nothing to give, you don’t have time on your side. All you can, and must, do is get through it and HEAL, so you can reclaim yourself and your life. I just mean you need to get proactive in caring for yourself and being informed as humanely possible. You should be well aware of everything you put in your body and what it will do to you, for better or worse. If you don’t prioritize your own well being, who is going to? Sadly, the vast majority of doctors these days care about your $, not your health. You need to care for you.