My Akathisia Experience


*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.

 

256 thoughts on “My Akathisia Experience

  1. Quick question: If you don’t move around a lot can it still be akathisia? I cannot stay in one place (except for bed) as just feels wrong and I do feel like flinging my arms around and pacing the room but when I was really awful i actually couldn’t get out of my bed (except to go to the bath for a few minutes of agony).
    I was in mental torment and felt physically like I was suffocating (and very nauseous) but didn’t ever feel a desperate need to move.
    Is this still akathisia do you think Angie.
    I swear that if it isn’t then there is something out there to rival the condition!

    1. TeaTowel,

      From everything we’ve talked about I’d say it’s definitely Akathisia. But I have to disclaim: I’m not a doctor ; )
      Bottom line is, your CNS and brain are not balanced and need to be soothed and set straight, so matters not even what
      you call it, the protocol will be the same. You’re on the right track : )

      Angie

  2. Lindsey,
    Thanks for your advice. I was on zyprexa. Taken off and put on paxil and trileptal. My meds have changed so much in the last 3months. The ativan and propanalol have helped. They just made me so tired I started not taking some doses because I have to help my disabled husband and couldn’t drive. Couldn’t drive at all when the akathesia was raging so bad thatI ccouldn’t concentrate or sit still. Thanks for your info. Glad your husband is some better. I am so thankful for helpful comments. Inez

    1. Hi Inez – thanks for your reply. I’ve not heard of trileptal….will have to check it out. Hope you are feeling better!

  3. Inez – I am so sorry you are still miserable. The Inderal and ativan did not help my husband. What finally seemed to knock it out was all the supplements we did, plus a low dose of a drug called Zyprexa. That stopped all the quaking and shaking and tremors. Then he sloooooowly tapered off of it. His shaking was so bad that in the ER the bed was quaking so much it sounded like a freight train going by. It took a full week in the hospital for them to find something..Zyprexa is a drug used for bi-polar and schizophrenia ( neither of which applies to my husband) BUT it did SOMETHING to his central nervous system to calm it down. Getting off that stuff caused some major full blown anxiety attacks, but honestly after full-on akathisia it seemed to be the lesser of two evils.

    Stay strong! Take good care of yourself. If you have an Ipod or something like that, you may want to try listening to binaural beats. There are alot of sites with free downloads. For best benefit you need to listen with earphones or earbuds. Even Dr. Oz thinks they are kind of cool….. 🙂

    1. Lindsey, Thank you for offering the advice. I have to chime in on binaural beats. I think they might be helpful, if purchased from someone reputable who knows what they’re doing when producing the tracks. But, they can be dangerous if used to excess, so anyone wanting to try them should be sure they’re getting the recordings from a good source and use them as “prescribed” don’t just run them all day long without restraint.

    2. The binaural beats my husband used were from Amazon…I am not sure whether I can post particulars? At any rate, they were an hour long, and part of a playlist we created using a lot of tracks using Solitudes by Dan Gibson, wave, nature and rainfall sounds, along with some very peaceful Celtic and classical music. On the same playlist was a guided meditation for relaxation. We tried to keep things calm yet not boring.

    1. Heidi, I honestly don’t know! I started taking it myself to replace ( with the blessing of my doctor) high BP meds I was taking for vascular spasms caused by menopause. L-arginine helps your body create nitric oxide. I started researching it, and studies have shown it to help nerves transmit information in the brain, among other things. Google nitric oxide. I thought it certainly couldn’t hurt my husband, but we both believe it has certainly helped!

  4. Lately I’ve seen several people mention that they took benzos to get thru akathisia. I was already on benzos prior to my akathisia an was trying to taper off of them. I had switched from one kind of benzo to Valium because it was supposed to be easier to get off of. So for about 4 months I didn’t make the connection that it was the antiphschycotic drug I had tried 2 months later that had caused me to feel so awful, I thot it was the benzo switch. So While suffering acutely from the akathisia I’ve been slowly coming down on the Valium because I originally thot that’s what was making me feel so bad, but every time I reduce I feel even worse for some time. So my question is, is reducing the Valium while trying to heal from akathisia going to prevent my recovery or really prolong it cause it upsets my nervous system even more? Benzes are horrible drugs too and I really want to be off but I am suffering so very badly. I’m down to 1 mg of Valium which is a very low dose. Almost off. I really don’t want to have to go thru the reducing again. Should I just grit my teeth and push thru till I’m off or will that cause more damage? I’m so scared and hurting so badly. 😥

    1. Heidi,
      From what I’ve seen, benzos won’t particularly stand in the way of healing. But again, I’m not a doctor. I’d say if you find you can get to an even place with the benzo being a somewhat regular thing, then for now, I’d stick with them until you are feeling stronger and having more good days that bad and then begin to SLOWLY taper down.
      That’s my thoughts anyway..see if anyone else chimes in.
      All my best,
      Angie

    2. Heidi I just want to say please please don’t cold turkey the 1 mg of Valium..I am not a doctor but I am 100% sure because I know from experience that your body will go absolutely haywire and all your symptoms will get progressively worse.you cannot cold turkey a benzodiazepine and you can’t taper it fast either no matter how bad you want to get off of it..i’m not really sure what we are allowed to say in this blog but I can only tell you how I came off the Valium..I did very well in my taper actually..when I got down to 1 mg I dissolved half of a 2 mg tablet into 10 ML’s of milk..I would shake it all day long to make sure that it mixed properly.. Valium is fat-soluble so it mixes very well with the milk..I have known people to use water but water didn’t work for me..valium
      does not mix well with water..doing it this way you would need to find a one ML syringe and a 10 ML syringe CVS normally will have them but if you know anybody who’s ever been a diabetic those syringes are what you need and you can also order them off-line..so anyhow I would pull 10 ML’s of milk with a syringe.. And I would squirted into a baby jar and mix one half of my 2 mg tablet with it..and then I cut every day .01 ML’s. It’s actually very simple once you get used to it and you can slow down as needed which is good about this. There’s no mistakes during this taper. You can Google milk titration if you don’t quite understand..it will take you 100 days to get off one my..The good news is is when you titrate very slowly your body does not go into shock and you’re able to have symptoms that are very manageable.. I always believe that my cuts were so small that my body didn’t notice and that’s why I didn’t suffer too much during benzo withdrawal.I only got the akathisia when I came cold turkey off the caffeine but I think it was still because of my benzo withdrawal. The symptoms were too similar. I just think I wasn’t healed from benzodiazepine withdrawal from the year before.anyhow I don’t know if they’re going to post this message and I don’t know if I’m allowed to say all these things so I’m going to have to read through and find out what is allowed and what is not allowed. But I would really like to help you. Angie can you weigh in and let me know if we are allowed to exchange emails? Thank you guys so much. I really appreciate this blog..I am not a doctor I am only giving you advice from what I have lived through..and what many others have experienced also.. Take care.I also wanted to say for anyone here going through benzodiazepine withdrawal, you need to be very careful about taking any supplements while you were going to benzodiazepine withdrawal and after because our bodies are very sensitive and it came greatly flare up your symptoms..this is just my opinion and from what I’ve read

    3. Lisa, if two people want to connect one, or both, will let me know and then I will exchange emails for you. Let me know who you want to connect with and I will see if they would like to talk privately with you. Thank you for your willingness to help others on here : ) This is how a message board becomes truly valuable.

      Angie

  5. To all of you suffering through this HORRIBLE situation – it CAN get better. I have earlier posts mentioning how my husband had a wicked bout of akathisia.Terrible. Horrific. Everything all of you are experiencing. But for him – it DID go away. KEEP UP HOPE! Your body/brain WANTS to heal. He had no choice to but take benzos, but slowly has backed off them. I have been giving him CALM, alkalizing/detox green juice powders, NO processed food and about 5000mg of L-arginine daily. The best L-arginine I found was in a cardio heart healthy mix that contains B-vitamins and L-citruline.I don’t know if I can mention brand specific but I found it on Amazon and it is in a red container. 🙂 Good luck and best wishes to all of you.

    1. Thank you Lindsey for posting this. So pleased your husband is better. I wish we could all have someone so understanding as you to help us through!
      Just a couple of questions: Did your husband experience windows and waves? Could he be almost normal only to go badly backwards again? Does he have low-grade anxiety now that he never had before?
      thank you Lindsey
      x

    2. Hi Teatowel! He did not experience “windows and waves” as described here. What happened was over weeks, a gradual lessening of his akathisia symptoms. His anxiety ramped to to EXTREME. It was dreadful. He ended up in a psych ward again – but THIS time the docs realized it wasn’t “all in his head” and switched his meds. They put him on Zyprexa short term, because that enabled him to sleep. Then a wean-off of that nasty drug. More anxiety. Now on a low dose of Latuda/Lexapro with .5 mg of Klonopin as needed. His anxiety is always running in the background of his life/body/brain. We are both working on every way possible to lessen it and help him cope. He has found it helpful to keep a journal of his moods and meds. Helps him see on bad days that he has had GOOD days and to keep focused on the good. Very difficult, it is always a work in progress. But if you don’t have hope, you have nothing. Also found docs who are VERY supportive and understanding. That really helped. Hard to do! Geeez! But worth the search. Good luck!

    3. This is a question for Lindsey specifically.
      You mentioned in your post that when your husbands akathisia lessened his anxiety increased. Is this right?
      I only ask because recently my anxiety increased to astronomical levels and I wondered if that perhaps happens when the akathisia anxiety (very different) is on its way out.
      It has come back anyway for me and come back BAD. But I did take a small does of lithium and clonazepam and B6 so any of those could have made things worse.
      I may have read your post wrong but I would be ever so grateful if you could clarify.
      thank you

    4. Hello Lindsey,
      Is your husband on lexapro? Has it helped with the akathisia dread?
      Sorry Im a little confused as you say he is well but I wonder if he is well and on drugs.
      Thank you

  6. I’d just like to say a very quick thank you to Angie for this blog and continuing support. I don’t think Im being over dramatic in saying that you could possibly be saving lives.
    I just wondered if you have emailed or talked to many more people than those that have posted on this blog. Do you have experience/knowledge of lots more recovery stories than those here?

    1. Firstly thank you Angie for sorting the postings out. My brain is so muddled that I found things difficult to follow.
      Heidi, I know that in my darkest most raging akathisia that I took klonopin and it helped somewhat. I have, however, only taken two since February as I do believe that two days later my akathisia gets worse. I also know that in the past I had akathisia after I took benzos but I was also drinking heavily and eating fish (twice many years ago).

    2. I agree with your account of benzos. From personal experience and those I’ve talked with,, benzos do seem to help with Akathisia symptoms, BUT, they do tend to cause a rebound on following day or so after taking a dose. The thing for me was, the rebound was much more tolerable than the actual symptoms the benzos helped with. So, I tend to think they’re worth a try, but to take them sporadically, not regularly, so as to avoid a major setback once titrating off of them..

    3. I think when you are in the throws of acute akathisia it is probably sensible to get through it any way you can. In my case it was a life or death situation and I know that drugs are preferable to death. I think I was VERY lucky that lithium and klonopin helped. Before I took the oils which caused the akathisia I vowed NEVER to take another drug again but akathisia took that choice and resolve away. I was totally non-functional, acutely suicidal and you get to the point where you really do not care that you have to take two steps backwards if it has a chance of keeping you alive.
      That being said if you can get through it without drugs then obviously that is preferable.
      Angie I didn’t think you took anything during your episode?

    4. Yes, I did take vitamins primarily B-6 and the green drink and the CALM drink. I also took tiny chips of Xanax when I was at my wit’s end.
      Aside from that, I did a pretty extreme detox program with herbs and lots of enemas,, this is when I finally started to heal.
      I had a bottle of Propranolol which I was too scared to take. Though I’ve heard since that it works well for many..

    5. Angie, did your extreme detox and enemas not make your symptoms flare?at least when you first started?Everybody says how careful u have to be with anything you take or do that might stress your system so I’m afraid to try anything new and extremely detoxing but if I knew it would help I would do it in a heartbeat!! I would like to try enemas but was afraid it would make me worse.

    6. I don’t recommend an extreme detox like the one I did, but detoxing little by little I think would be a great idea. If you choose to do enemas, only do them once a week or every two weeks and don’t do the crazy strong ones like a coffee enema, just warm spring water, or with a little lemon juice. You definitely don’t want to stress the body, but ease it into healing mode. I think just cutting the foods that clearly affect you, drinking a lot of water, using some sort of green drink and cal-mag is a great way to start detox. Then adding enema and sea salt baths can really help take it to the next level.
      Remember, these are all suggestions from one person who’s been through it to another, I have NO medical training and all suggestions should be evaluated by a licensed health practitioner.

  7. Hello,
    I am struggling at present with the window/wave pattern of recovery. I can have good days (or parts of days) but then I go back to hell. I am now so weak mentally that when I get bad I am unable to cope. I have no strength left to fight this condition and very little hope.
    I keep mailing Angie but can anyone else please describe their window/wave pattern. I just don’t understand how you can feel relatively well and then go back to acute suffering.
    I have given up sugar approximately three weeks ago and I am wondering if my brain is in WD or some sort of imbalance because of that. i will not eat sugar again though as it definitely makes the akathisia worse.
    I am so desperate for sustained relief. i have a young child with OCD and trying to deal with the stress that can cause on top of acute anxiety (not really anxiety) is proving to be too difficult.
    At present I feel my brain is too broken, too damaged, too vulnerable and sensitive to ever recover.
    I would also be interested to know if other people (whether in a flare or relatively good period) have acute lethargy and nausea too.
    I am in the worst imaginable nightmare that I cannot wake up from.
    Lilachummingbird did you improve?
    Starlight how was your recovery pattern after a year.
    Really Im just needing to hear from people that had akathisia (mine is more mental than physical) for a year and what pattern of recovery they noticed.
    Im desperate. So desperate.
    Calm powder made me worse but Im not surprised as everything seems to make me worse.
    Thank you to anyone that can offer me any support.
    Bry how are you?
    x

    1. Hi Teatowel

      It’s Bry. The waves/window pattern is very typical and is a good sign of healing. I’m getting this pattern too and I’ve questioned it, just like you. The waves are scary because you feel like you’ve been getting better only to get slammed again. I’m speaking from a massive wave that’s just hit me hard! I don’t get clear windows yet but I do get sort of windows in that I feel more functional and some of the symptoms wax and wane. I’ve had one or two windows where I’ve felt more like the old me.

      If it helps any, I know someone (I won’t say too much because I don’t have permission from her to give too many details) who took an ssri for many years. She was fine for some time when she came off it then later got hit with severe akathisia and some tardive dyskenesia. She was very bad for six months but was starting to improve and get windows, then she reinstated her ssri. It made her much worse. She came off this reinstatement. Later, she started getting the sort of weak windows that I’m getting and that you’re possibly getting. Now, a year on from her failed reinstatement, she is getting some really great windows where she feels normal! She still gets waves and feels discouraged by them but they are not as bad as previous waves and her windows are very good. She’s even working part time now. I hope this helps because she was very, very sick indeed.

      I read that you take Ambien. This is a Z drug very similar to a benzo. It may be worth thinking about this.

      Again, it’s a great sign that you’re getting windows. It reminds me, in my current tsunami, that waves and windows are very normal in this process and are a sign of healing. While we are in a wave, our body is preparing us for our next window.

      Keep going, strong lady. We haven’t reached the finishing line yet but there is a finishing line. We just can’t see it yet but it is there.

    2. Oh dear tea towel I also had no idea you were taking any medication.. I am
      So sorry to say this but ambien is definately your culprit in this.. As a sleep aid I know many people who have taken it after or durning benzo withdrawl..of course I am not a professional but I can tell you from experience that anyone of those drugs will cause you to have akathisia. If you bought akathisia from simple walnut or fish oil and there’s probably a very very good chance that you’re getting it from the Ambien..it’s not the Ambien so much as it is the prior damage that you had. Just like me with the caffeine I had prior damage from opiates and benzodiazepines so it made me susceptible to the akathisia or the caffeine withdrawal. And I understand what you’re saying about coming off the sugar I was drinking upwards of about 10 Cans f soda day and eating tons of sugar so yes I probably did go through some sort of sugar withdrawal..I do still eat some sugar from time to time when I have a sweet tooth but I eat like maybe two or three bites of a piece a cake or a couple bites of ice cream and it helps satisfy my cravings. My akathisia is getting a lot better but it still slams me back sometimes. It is truly the worst experience of my life..i’ve been panicking lately because I’m in a wave again and I’m just a little nervous about it. Like I said I was eating the stupid cake that had a little bit of cocoa in it but I was thinking oh my God it’s putting me back in with drawl. But I know that that’s just not that rational thinking and I have to be more positive with my brain..I refuse to stop all sugar now after what I just went through I think I’ll just adjust my body to what I am eating right now because I was not going to withdrawals again from anything anytime in the near future. And I do okay on sugar it doesn’t really affect me too much and it doesn’t worsen my symptoms. Even when I’m doing really bad I can eat a yogurt or something with sugar in it and I’m fine. I would definitely get off the Ambien if you could because I’m telling you right now that’s what’s causing your flareup. I have a friend who was three years of benzo’s and she went to a dental procedure and was given opiates for only 10 days and she’s been back in withdrawals for the last 22 months. She has horrible horrible days still. There are many blogs and resources out there to help you get off medication like that. Benzobuddies.org is a good one. There’s a lot of people on there that can help you. That’s where I went when I was in the really bad throes of withdrawal…last night I had a really good window actually for about six straight hours it was insane how good I felt I was like wow what is going on. Now I just woke up and I feel like crap again. The mornings are always the worst. If my body is addicted to sugar well then so be it I’m not going through any sort of withdrawal again no way. After what I went through it was horrific. And I do want to stop eating a lot of sugar in the near future because I want to lose weight but I’m gonna wait till my body is completely healed. I’ve always been a sort of sugar junkie..hey I mean if it’s not one thing it’s the other at least I don’t smoke cigarettes, drink alcohol, smoke pot, or take pills anymore LOL. I got to have a vice LOL. And I sure do miss my coffee. Maybe down the road eventually I’ll drink some again not for a very long time. And I’ll admit yes I do have a very addictive personality, I always have. If I could’ve taken pills for the rest my life and gotten away with it I would have. I had a lot of pain in my back and they made me feel good. So now I just sit here in the day where I feel 100% like myself again. I did once before I started drinking the caffeine again I was doing pretty damn good. it was when I tried to stop that my body went crazy.it was very odd all the symptoms I suffered, they were very much like benzodiazepine withdrawal. Actually much much worse..probably because I tapered the pills and I cold turkey caffeine and sugar..if you don’t mind my asking what medication to be taken in the past and did you taper or cold turkey yet? How long ago? Your history of medications name for my mess. It will tell you a lot about your current state.how long has this last we’ve been for you? Please write back and let me know how you’re doing, Lisa

    3. Oh my goodness Teatowel!! You have to be very careful when you stop doing things …you can’t just stop eating sugar cold turkey like that it puts your body into shock. The receptors in your brain are very sensitive and this and any kind a huge change will affect us greatly..this is the reason I will not stop sugar cold turkey.. If you Google sugar withdrawals they have a whole load of symptoms just by there self without all your past history of medication use for the Ambien or what you went through with that akathisia…please try to eat some yogurt or something. Even a little strawberry milk or something with a little bit of sugar in it you can’t just stop doing these things called turkey honey it’s going to send you back to hell.. I am not a doctor in anyway shape or form but let me tell you I probably could be a doctor if I wanted to right now LOL..I know more about these medications than most doctors. When I told the doctor that I was having akathisia and all these other symptoms like to depersonalization or derealization or all these other symptoms they looked at me like I was nuts!! This is just a sad shame that we are suffering like this. And yes Ambien is in the class of the z drugs which do you work on the receptors just like a benzodiazepine..I honestly would do some research about getting off those pills. And stop stopping things cold turkey LOL.even people who are never sick before or who went to medication withdrawal would have a problem with their body quitting something cold turkey..just remember when you’re in a wave that you’re healing. I’m not sure Angie knows what windows and waves are but I have them all the time..Windows are kind of like when everything is clear and you feel good and you feel like your life is back to normal almost 100% but there’s a little bit left in the background are you like I wonder if I’m going to go back in the house. And then you have waves what you feel like you’re in a freaking Tsunami wave stuck in there and all your symptoms are horrible and you cant get out..I am sure Angie’s had windows and ways before but she probably just described some in a different way. When she was healing from the akathisia she probably had days where she felt decent which is a window and then she had days where she thought that everything was okay and then she just got slammed back to hell which is always..but we are just describing in a little bit differently.. I’m almost positive that you going to the sugar withdrawal is doing this as well as taking the Ambien so I’ll leave you on that note. You have to decide what to do. It’s your body. You will be okay. This will pass soon..all my best, Lisa

    4. Not back to the house lmao! I meant back to hell.. This is a correction of my former post lol..I was talking about windows and waves lol

    5. Thank you to all who replied to my post. I am suffering greatly but yes perhaps it is sugar and ambien WD. I didn’t take many but perhaps that is all it takes.
      I’ll just have to go crazy with the insomnia.
      Feel so nauseous today. Lots of retching. I basically walk around the house retching.
      Just wanted to say thank you. I hope you all see this reply. i am a little confused as the comments do not follow chronologically.
      x

    6. I believe I fixed the order of the comments, should be in chronological order/by date at very least..I have limited options for organizing.

    7. Teatowel, lilachummingbird. Thank you for asking. I’m not sure how or what I’m responding to…lol I have such a hard time thinking not alone trying to follower this blog or operate the computer in any way. Just seeing my name, someone asking has lifted my heart. I am able to read through comments today and have picked up so much more info that gives me hope (I hope I can retain it to use!)…the explanation of the waves/windows patterns makes so much sense – those little glimpses of “non-craziness”, actually able to process thoughts, feel somewhat at peace emotionally, get a little walking, shopping, housework done that seem to come out of the blue that give me hope …and not feel that compulsion for suicide. And the milk & benzo weaning…
      the L-Arginine. That’s the problem, I’ll manage to have a “moment”, read, get info, but can’t retain it, write it down & lose it, get some hope & can’t remember any of it to put into use. I just feel like a pinball in some demented,gone awry nightmare machine. Mostly like a fish out of water who occasionally flops around struggling to live. I truly feel if I had someone, anyone…1 friend I could stay with who made sure I ate regularly, healthily, who I could talk to, be with I could manage this. To those of you who have stuck by your loved ones – you are blessed! I KNOW it isn’t easy to deal with a person going through this – you ought to be inside here! lol YIKES!
      Yes, I wish there was a place to go to help me through this. I’ve always been a very strong, independent person…now, I’ve got nothing to help myself…if I manage to eat once a day it’s a good day. I could be starving, stomach screaming to feed it and it’s as if I don”t care, wish I’d just starve to death, just can’t connect & follow through…
      But, I lost my last friend w/ the 1st bout… she’s just done I can tell, rarely takes my calls, I don’t blame her,she really put herself & family out for 6 months just to get me out of crisis the first time. Just me & God and most days I question whether he’s the big guy in charge…I just pray, self soothe, do what I can, be gentle w/ myself, distract or numb out w/ that detestable TV – which I have to control – even certain commercials send all my nerves into overload. I hope to try to connect here more when I can follow mentally…I need this. Love, patience & long hugs to all. If anyone could offer support, an “ear” through e-mail, I could handle that…just don’t know that I could be of much help, support back, sorry, not a lot to give & I’m fighting for my life…I think. 🙂 Don’t know if I should give my e-mail address here or how to go about that… Thanks for allowing me to ramble, thanks for being here. ❤

    8. Lilachummingbird,

      Thank you for sharing your story. Don’t post your email, if anyone wants to connect with you I will pass that info along if they post/message and let me know that. This message board has turned into a thriving support network. You will probably get good support through public posts and if you need to just vent in private you can always send along a post and request private email with me.

      My thoughts are with you,
      Angie

    9. Thank you, Angie, what an angel you are. Just knowing you are there, knowing others are here, the info being passed on in comments, the love & support that is shared, makes the really tough times so much easier to bear. What a blessing! Much love & hugs of healing energy to all. 🙂

    10. You’re welcome 🙂 I’m very happy with how warm and supportive this message board has become..it just shows how powerful everyone is, even in the midst of this hell. Seeing you all work together brings me great joy!

    11. Dear Lila,

      I know exactly how you are feeling. It is a horror movie that never ends; it’s just that the intermissions become more frequent and last longer. My (new) doctor thinks I’m in a PTSD-type phase, but the most acute symptoms of the akathisia have subsided.

      I have to confess though, not counting the 2 weeks of Buspar, after 47 days of Zoloft detox, I was unable to stand it any longer and I, with great hesitation and a pounding heart, began taking Luvox. Within FOUR hours (yes), I could feel the veil of dread and terror lifting. This was 3 days ago, and each night since, I’ve taken 25 mg of the new drug.

      I called my doctor and he concluded that such a rapid response is NOT due to treatment of the original condition (OCD), but rather an alleviation of drug withdrawal. I am not, in any way shape or form, endorsing Luvox or any SSRI, just merely resigning myself to the fact that (right now) I am unable to stop taking these medications. I hope to one day soon, in a very carefully monitored and gradual fashion, taper these drugs. But I cannot live with akathisia, the sheer horror at every single thought that enters my mind, and that gripping fear that a magnet is going to pull me into oncoming traffic. NEVER in my life had I known that kind of mental state until being taken off Zoloft abruptly. Sadly, my old doctor will probably never be able to empathize with my saga, one that is 100% HIS FAULT!

  8. I’m actually writing this, because I want to tell you all what I’ve been going through for the last year or so.. It actually all starts back in November 2010 when my father passed away.. I have been taking opiates for about six years when he died.. He died of cancer and they were giving him so many medications I thought well wow I’m alive and why am I taking all this medication every day.. Now too I did have pain but I thought we’ll maybe I could just try other things to manage my pain in my back.. So I started cutting down on them. I was only taking 2 lortabs a day.. I never took more than that even though I was prescribed 4 a day.. I normally took half in the morning half in the mid afternoon half in the late afternoon half at night time.. I never abuse them and I never drink or did any other drugs while taking them and I actually was prescribed Valium as well but I never did take those thank god.. Anyhow I started cutting down on the pills pretty quickly because I didn’t know of course that they would have such a bad withdrawal.. I Cut down about half a pill every week or so.. Then all of a sudden one day while I was working I started getting tunnel vision my right arm went numb and I went into a frenzy I had no idea what was happening I thought I was having a heart attack.. When I look back now I know it was a panic attack but of course I didn’t know at the time. So they called an ambulance and I went out in the ambulance…. The second time they gave me IV Ativan. And sent me home with a prescription for Ativan and told me that I had an anxiety disorder now because of the recent losses that I had suffered.. I started taking the pills and I felt very suicidal which I had never experienced in my whole life.. I didn’t want to take them anymore so I went back to the hospital and they gave me Xanax instead.. Only help me for a couple days as well and then I also started feeling suicidal.. I started having horrific heart palpitations and all these weird symptoms so I went to the hospital and they admitted me. While I was in the hospital they did all these kinds of scans on my brain in all these different tests and they couldn’t find anything wrong with me. I had told the lady that I was taking the Lortabs for many years so she gave me a half a pill and of course Bam all my symptoms were gone.. I knew something wasn’t right.. I left the hospital and I continued to take the benzodiazepines because I didn’t know but I stopped taking the Lortabs on Christmas and I went straight to hell. I went to a psychiatric unit on Christmas Day which was horrific because I have children.. They tried to put me through some kind of a detox thing which only made me worse.. Came out of there and I stop taking everything… I quit 25 years of caffeine this which I drink a lot of caffeine, I was chewing nicotine gum cause I was in the process of quitting smoking so I thought that, I stopped my Lortabs,and I stopped the Ativan, and Xanax too. Of course you already know that I went straight to the depths of hell… I didn’t know what the symptom was at the time but I know I was having severe akathisia when I look back on it now.. My symptoms were so bad that I went to the emergency room 56 times in two months.. I was there almost every single day.. Every time I went they gave me Ativan or Xanax.. Finally I stopped going to the emergency room but about three weeks after all of this I had stop using everything I went to the ER because I was having terrible pressure in my face which I now know is a withdrawal symptoms they told me it was a sinus infection and gave me an antibiotic.. I only took one dose and I felt like my body was being electrocuted from the inside out.. All my symptoms were 100x worse.. Of course I thought I was going crazy so I checked into another psychiatric ward and I don’t even want to talk about that experience they try to give me 1 million different pills it was horrific.. I ended up taking one pill of Paxil and went nuts I puked it all up think God but I’m not really sure if it did any damage or not. They also try to give me Zyprexa which I screamed out telling them I’m allergic to that pill I’m allergic to that pill that he’ll kill me if you give it to me or that shot they’re trying to give me a shot of it I think I have no idea where the strength came from for that one.. After that experience I check myself out and went home with my mom and my boyfriend. My mom was in the process of packing my house up so I can go and stay with her and my kids to go with my sister to Las Vegas. I was not able to even take care of my children I was so insanely sick.. After I stop taking everything I found somebody who had went through the same experience after researching for many nights online.. Found a page on Facebook called Ativan withdrawal and she was my savior.. She told me to get a hold of some value and reinstate so I can start a slow taper.. I really think that save my life.. I went back to my pain management doctor and I told him that I had anxiety now and if I can have some Valium which he used to prescribed to me all the time but I never did fill.. Thank out I never filled those pills.. He gave me a small prescription for only 60 pills 2 mg apiece which then I started to take them and I stabilized on 3.5 mg.. I found somebody to teach me a milk taper in which I dissolve my pills and milk and then I slowly tapered over seven months.. I was about 60 to 70% my whole taper. But now I realize that during my period or ovulation I had something called akathisia.. It was horrible it felt like I wanted to rip my skin off her that I was crawling out of my own body but I couldn’t get out I had such high anxiety and panic it was horrible but I was pretty much stable for the most part during my benzodiazepine withdrawal.. After my benzodiazepine withdrawal about seven months later I happen to get pregnant but then I lost the baby and the following month I got pregnant again and my babies now 18 months old… Now for the part about akathisia. I honestly did not know what akathisia was until I quit drinking caffeine cold turkey.. I know it sounds crazy but about 15 months after my benzodiazepine withdrawal I started drinking caffeine again because I thought it was healed.. Well it got out of control and I was drinking about 10 cans of Pepsi a day.. I wanted to start losing weight when my baby was around 4 1/2 months old so I started cutting down on the soda.. I honestly never knew that soda could have a withdrawal.. Maybe because I still was not benzo healed and I was only about two years off benzo’s.. I’m not really sure what happened but on September 8, 2013 I went to a worse hell that I could ever have imagined even worse than benzodiazepine withdrawal.. I did a lot of research and I found out that caffeine does work on your dopamine receptors but in large amounts which I was drinking.. I also had my hormones a play at the time but I was doing pretty okay I was still breast-feeding and my baby was about five months old.. So on September 8, 2013 something hit me it felt like a bad acid trip.. It reminded me very much of the first time that this all happened to me back in 2010.. I don’t my god what could it be I’m not taking anything but I was I was stopping the caffeine.. I am a year and one month off caffeine today and I’m still not doing great.. I don’t know what happened to my body are Wyatt reacted like that to coming off of the caffeine but I was in the worst hell of Hells ever imaginable in a human body.. I had severe severe akathisia so bad for about six straight months that there’s not even words to describe what I went through.. Thought about suicide 24 hours a day seven days a week.. I called the suicide hotline almost every day and I had to face time with my mom 24 hours a day otherwise I would not have survived it.. I tried going back on the caffeine because I thought it was just simply caffeine but I couldn’t.. For the first five months I could not function I was in bed 24 hours a day only laying there with my baby I felt so horrible that I was being such a bad mom.. I could not believe I was going through what it felt like severe benzodiazepine withdrawal again in the beginning before I was on the value so basically I was in cold turkey again.. I had absolutely no windows whatsoever.. Around March 2014 I started to feel a tiny bit better.. Still had akathisia severe panic and anxiety tons of other symptoms but I was able to function a little bit.. As I write this right now I feel like absolute hell. I actually have akathisia today and tons and tons of body pain and weird head symptoms.. I recently found out that I eat this cake once in a while that actually is called red velvet cake but I found out it has Coco in it which probably has caffeine which made me panic a little bit.. Really don’t think I’m eating enough to do anything but maybe two bites here and there.. I do have windows now but they’re not very long yet.. And I do still have akathisia but it’s a lot more mild than it was.. I read a lot of stuff about how to not have akathisia like don’t drink juice and sugar and all these different things I mean I still do those things and it doesn’t make it worse or better.. But I guess everybody’s different.. This morning I woke up with it because I think I’m in ovulation which really affects my body and our hormones.. I know many many many people that have gone through this before.. I know many people who have gone through benzodiazepine withdrawal because I’ve met them on many forums and I became friends with a lot of good people.. And every single one of them that I’ve ever spoke to has had akathisia.. It is downright the most horrific, terrifying, horrifying, feeling there is on this planet.. And I feel sorry for anyone who is ever experienced it .. I really would like if the owner of this blog would write me please on my email.. I just have a few personal questions for you that I wanted to ask and I was wondering if that would be okay if you wrote me.. I’m still suffering on one level or another.. I think I still just have a lot of damage from the caffeine or the benzodiazepines one of the two.. I am sorry to all you sufferers of this horrible horrible symptom.. I know that there is hope because the first time it went away completely 100% I didn’t even have a stitch of it. This time around I’m only 13 months into it so I’m hoping maybe in the next year it will go away hundred percent.. I too feel like I’m permanently damaged like a lot of these people here.. It really scares me because I have six children that I have to take care of.. Now there was one other thing I wanted to mention. I had my baby back in March 2013 and I did have an epidural which is known to cause delayed akathisia and some people.. I don’t know if that’s possible… What happened to me but I guess in this anything is possible. This started when I was five months postpartum.. I have a lot of tight rigid muscles all the time and sometimes I feel like I can’t breathe.. My anxiety has come down quite a bit than what it was a few months ago but I’m still dealing with a lot of symptoms.. I have weird stuff like head pressure, depersonalization, derealization and other weird unexplained symptoms that I never had in my whole life. I’ve never suffered from any kind of mental disorder or anything like anxiety or depression even.. I only took the stupid pills because doctors told me that I had pain in that I should take them.. I will never trust another doctor again in my life.. And you could not pay me $1 million to take another pill. The lady that had the problem with the walnut oil and the fish oil kind of scared me because I had the problem with the caffeine so I guess anything is possible in this. I’m actually going to re-read her post because if I’m not mistaken she had a history of some kind of medication use which would make sense. Guess being on medications make a susceptible to things that we would never have been susceptible to.. Please write me back if you can. I would love to hear from anybody on this blog that’s been through this hell before.. And I’m here to help anybody that needs help as well.. I’m still suffering.. And I still need support sometimes. I want to think the writer of this blog for making this horrible horrible condition known to others. You have probably saved many lives and you just don’t know it, take care.

    1. Lisa,

      I’m very sorry for what you’ve been through and the suffering you’re still enduring. Thank you so much for taking the time to post your story.
      I too have been amazed to learn of all the different ways one can be tipped over into Akathisia. But absolutely, I agree, generally it starts with
      some sort of medication. Hormones, cigarettes (or withdrawal from them), alcohol, sugar, etc. all do seem to play a part. I believe the info you have shared will be very helpful for others who are trying to figure out the combination of what to do and what not to do.

      Please keep the blog updated with your progress.

      All my best,
      Angie

    2. Hello Lisa,
      I am the fish oil/walnut oil lady.
      Im so sorry you are suffering. Being a mum and trying to maintain a ‘normal’ life for our children when in the throws of akathisia requires super human strength. When I was flaring I couldn’t be a mum in any form.
      I definitely think that our brains are vulnerable after taking drugs (yours would primarily be the pain meds) and that is why I am so disabled by oils and you coffee.
      When I read your post, what struck me was that maybe the drinks you used to consume had sugar in them. I have come off all sugar and initially I felt a great relief in symptoms but now I am terrible again. I wonder if your caffeine WD was also sugar WD and that our brains are trying to balance.
      I think in our cases, the caffeine and sugar and oils were the straw that broke the camels back. I always had mild akathisia from time to time (usually coming on and off drugs) but never full blown life-threatening suicidal akathisia.
      I get a lot of insomnia (paradoxically when I am feeling much better) and I have taken a lot of ambien recently. I wonder if my recent demise is due to them. Probably.
      I think all we can do is survive. Do not drink any caffeinated drinks, do not eat sugar or white flour and stay away from supplements. Calm powder did not help me, made me much more edgy. Chocolate would probably be a terrible choice and aspartame too.
      I have been suffering for a year. My symptoms come and go and evolve into other symptoms but always return. It is soul destroying. I hang on by a thread. God knows what would happen if something terrible happened in my life. I think I would explode or implode or something 😦
      x

    3. TeaTowel,

      Thank you for reaching out to others on the board!

      I had no idea you were taking Ambien — That drug affects the brain in very strange ways. I’ve seen it first hand in friends and have heard and read about it in the past. You may want to consider going without these pills as you’re healing, or maybe forever..just had to chime in there.

      All my best,
      Angie

    4. About Ambien and other sleep drugs — they MUST be tapered. Stopping one of these drugs abruptly can bring on rebound insomnia. Cut up tablets in quarters or less to taper over several weeks or more.

  9. Hi, I ran across this website and while it gives me some hope it makes me very afraid because. I don’t know how to handle what I’m experiencing for many more months. I had been on low dose of abilify for 10 mo n was still very agitated n irritable. (Now I wonder if it wasn’t akathisia even then.) went back to my dr n she put me on latuda. The higher dose I got to the more distressed I felt every night after taking it. I could not concentrate. I was so miserable that the only relief I had was going to bed. At that time it was mainly physical discomfort. After
    7 wks of this I couldn’t handle it anymore n she rapidly took me off n that’s when the mental horror began. The doom terror blackness that grips me is indescribable. No rest or peace of mind. But I don’t have many physical symptoms. I long for rest and quiet in my head. It’s been six months like this now. I did feel like I was gaining done ground a few wks ago but now I’ve been slammed back in the worst of it. Is there any hope for me? Why did I get so much worse again? I’m so scared but scared doesn’t even begin to describe how I feel.

    1. Heidi,

      Don’t lose heart. The feeling like you’re gaining ground and improving and then backsliding is a hallmark of Akathisia. This just seems to be the way it goes for most everyone who struggles through Akathisia. Don’t think for a moment that it means you aren’t going to heal. Healing will be sporadic and back and forth, just as you describe, until one day you realize you’re feeling well more often than not and then one day you will get back to your old self. I’ve seen it MANY MANY times now, as I’ve been helping folks through this for several years now.

      Please follow the suggestions in the blog posts for balancing your body/mind. The nervous system and brain are in a heightened state of, well, trauma really. And this takes time to get back into balance. There are many things, as I list in the blog, that can help soothe your nervous system and brain function. Staying positive and filled with faith in your own body’s ability to come back into balance is key.

      Ultimately, your body is stronger than the meds that tipped you out of balance and it will recover in time. I know it feels as though you’ll never come through this, but I and all the people that have been through here are living proof that HEALING HAPPENS.

      Please feel free to stay in contact, share on the blog board or contact me if you need further support. I’m always here if you just need to vent and need reassurance.

      PS – Propranolol has been quite helpful for many people during their healing journey..have you considered trying it? You may want to talk with your doctor about it.

      My thoughts are with you,
      Angie

    2. Hello Heidi,
      It is scary. So very scary as Im not sure the level of suffering is within our normal coping mechanisms. When I was bad I simply could not believe the horror. Normal withdrawal from drugs ( and I have wd from many) was hard and I was anxious but comparing it to akathisia was like comparing a headache to a migraine. In all seriousness normal WD was NOTHING compared to akathisia.
      Is there anything you could have done recently that may have made you worse (high sugar/other drugs/stress/illness etc)?
      When you are going through this hell a minute seems impossible to get through but somehow you hang on.
      I so hope you see some windows soon x

  10. Hi Teatowel. I love your name!

    It’s been exactly a year for me. Well, a bit longer actually because antibiotics kicked this thing off and then it sort of morphed into high anxiety and broke up into times when it was awful and times I felt normal. I had constant pacing and banging the walls on the antibiotics but when that died down I was left with nausea and retching and on/off doom feelings and suicidal feelings but not the movement part. I think a lot was my own anxiety then too. I used to make myself go out and do things and it would work..I would feel normal some of the time.

    Going on citalopram was the worst mistake of my life. It gave me true severe 24/7 akathisia, which I still have. I can’t keep still, I manage it at times, especially when I’m out but it’s really really hard not to move. I have all the severe doom feelings, terror and suicidal ideation and shed loads of other symptoms. The withdrawal is insane.

    I’m not on sertraline any more. I came off that in march and came off quetiapine about a month before. I wasn’t on them long. I’m now dealing with severe withdrawal syndrome from sertraline, quetiapine and lorazepam on top of the akathisia. I tried reinstating sertraline to help with the withdrawal but it made the akathisia worse. I took my last dose mid June. I took lorazepam at the end of June and it turned on me. So it’s only actually been 2.5 months med free although I’ve been in acute withdrawal for 6 months.

    Foodwise, I’ve cut out sugar, dairy and gluten. I don’t drink alcohol. When on the drugs I couldn’t stop eating and ate loads of sugary things. I’m now detoxing from the food so my body is going through a major cleanse.

    If I get out of this, hopefully it will help others because if I recover from the zillions of symptoms I have, I really think anyone can!

  11. Thank you, Kieran, I really appreciate your reply. I’ve tried 10mg twice a day. I doesn’t do a lot to suppress the movement or surges..maybe a tiny bit. It doesn’t make a huge difference to the doom and darkness bit but it does calm it a little and makes me more functional. It takes away the terror a little. So I’d say I’d does help a bit, even if it doesn’t take it away.

    I may try a higher dose to see what that does.

    The one thing that made a huge difference to start with was lorazepam but I hit tolerance with that even though I was taking it sporidically. It became paradoxical and I now have benzo withdrawal on top of the akathisia.

    Thanks again. I will keep pushing through.

    1. Kieran,
      You mention that food reactions caused akathisia. What foods did you identify as contributing to the horror? Did sugar make you feel worse? If it did was it immediate or delayed?

    2. Bry,
      Im so sorry that you are going through this hell. You are coming up for a year like me I think. It’s too long to be in this level of discomfort isn’t it.
      I do not have the constant movement but the thoughts and nausea. It is pure hell. Please read my post if you have a moment.
      Im just wondering if you are still on the sertraline? Forgive me if I read that wrong.
      Also how are you and how does food effect you now?
      Many thanks
      Teatowel (truly ridiculous name but first thing I saw when I was filing in details.)

  12. Hi Kieran

    I am so glad you are recovering well from akathisia.

    Do you think taking propranolol sped up your recovery? When you came off it, was the akathisia mostly gone? Did you get any withdrawal symptoms from the propranolol?

  13. So I had Akathisia this past fall. I think my case is rather weird. Mine was brought on from Resperidone (Resperdal). I have OCD, and had just moved home after a 3rd stab at a career that failed. My OCD creates such terrible performance anxiety, it’s difficult for me to work in corporate America, or really any career outside of blue collar work, though I have a degree in business. It’s very frustrating, a college degree held hostage by OCD, my life story. But I digress. I had moved home, and was depressed, tired of life not working out. About four months later, a weird existential thought came into my mind, and began to loop. I became scared because I couldn’t explain the meaning of certain benign feelings. The feeling I get when I’m at the Mall, the certain feeling I have when I’m in a state, like “My California Feeling,” or “Utah feeling.” Very very very weird, I know. But it looped and scared me. My initial mental health professional just gave me a different anti-anxiety med every couple of weeks, and this brought on some very bizzare and uncomfortable feelings, hard to describe. So I went to a new Dr., she prescribed Resperidone to battle these ruminations and bizzare feelings. After a month on this medicine, FULL BLOWN AKATHISIA I.E. HELL!! Akathisia was staring her in the face and she didn’t know what it was, so she increased my dosage, which made it even worse. It lasted almost a month, when I was finally admitted to a Crisis center and put on suicide watch. An angel from heaven, the Doctor who now does my meds, diagnosed me with Akathisia the first time she saw me. They took me of Resperidone and gave me Cogentin and Ativan. The worst part was over. But for the next four months I would wake up with pounding anxiety. I would vomit almost every morning. I could sit still and the “TERROR FEELING” that is Akathisia had left, but I would feel scared for no reason. After about four months of this, it finally subsided. But I have never felt the same. I can’t feel peace. I can’t feel, “Just Normal.” I always feel a little panic and worry, it’s mild, but it’s all day, and I’m afraid it may never ever go away. My mind is always ruminating about this subtle discomfort and how hard it will be to marry, have a family, and start a career to the underlying tune of mild panic and worry always playing in the back ground, not to mention OCD. In a nutshell, I can’t every feel calm, or still, there is always this little anxious buzz in the background. I’ve been out of the hospital a year know. Have you ever heard of this happening to other Akathisia victims? If you have any insight, I would be so grateful if you shared it with me. Your story is sobering. I can’t believe your alive. Your a warrior. Most people don’t know what pain is in this life. Akathisia is PAIN. After Akathisia financial problems, loosing a job or home, or relationship problems are like a day at the beach.

    1. Adam,

      The last sentence in your comment gave me chills. You really nailed it on the head there. Thank you for sharing your story. Absolutely – Yes! I still had quite a bit of basic anxiety for another year following the initial year of hell. It waxed and waned and eventually I got back to 100% but it took it’s sweet time. This is common. You’re not the exception, nor are you stuck this way forever. Just be patient, relish the relief you do already have, keep taking good good care of yourself and KNOW YOU WILL HEAL. Because you will : )

      Please feel free to stay in touch, your story is very thorough and a great example of just how this goes for so many and that is very helpful to others.
      All my best – From one warrior to another 😉
      Angie

    2. You only took risperidone for a month bud, so it’ll all go away. It could take a very very long time (think months or possible a year or two) with 2 steps forward, 1 step back to finally resolve but the only way these things are permanent is when you take the antipsychotics for years (and it’s usually from 1st generation ones). If the last of it lingers month after month, don’t be discouraged. Stick to a super clean diet, do yoga if possible and your brain chemistry will rebalance in time. It took me 6 months just to get off propranolol. Stick to every way you know how to cope, and you will eventually realize you are not damaged goods. All the best. 🙂

  14. Hi Angie

    I just saw the comment by my3boys. I’m wondering..the movements with tardive dyskenisia are involuntary, aren’t they? If the movements are voluntary then I think it’s akathisia. I think with tar dive dyskenisia, the movements happen on their own, for example facial twitching, tongue movements, legs moving on their own.

    I move all the time with my akathisia. I hardly ever stop moving. My movements are voluntary, though. I HAVE to move. If I sit I’m jigging my legs up and down all the time or moving my toes, moving my legs from side to side, drumming the base of my neck with my fingers, all to get away from the internal turmoil. It’s virtually impossible to keep still but it’s not involuntary. This is akathisia isn’t it, rather than dyskenisia? I hope so.

    1. Honestly Bry, I don’t think they have the lines between the two all figured out. In school I learned that TD can be somewhat voluntary. But then yes, I’ve read about it being the more outrageous involuntary almost seizure like movements as well. The way I separate the two is Akathisia involves major inner torment and very dark and scary thoughts as well…TD, primarily movement related symptoms.

      I know you’re worrying about the possibility of TD because for some it’s permanent, but that is rare and generally in people who have been on (and are generally still on) meds for many years before figuring things out. It’s sad the doctors keep people on meds even after they exhibit such side effects, but they do ALL THE TIME.

      The key is to be proactive and if you are not reacting well to a med, GET HELP GETTING OFF OF IT! That’s my take on things anyway…

  15. My son developed akathesia after being on Invega and Abilify. It’s horrible. He can’t sleep. Each time we go to the ER they just ignore what we are saying about the “constant moving” and “constant pacing”. They just keep telling him to take cogentin. He tried Benadryl and Propanolol. It’s making him miserable and depressed. He’s now on Latuda, Zoloft, Klonopin and Cogentin. All we want is to have a Dr. take him seriously about the akathesia and not lump it in with his disorder. Any suggestions on what he can do as far as herbs/ vitamins? It’s been 4 months. WIll this EVER GO AWAY?!

    1. I’m very sorry for what your son is going through.
      It can take a long time for Akathisia to fully resolve. It sounds like he’s suffering primarily Tardive Dyskinesia. Is he suffering the mental agitation, anxiety and dark thoughts as well?
      Sadly, I have yet to see anyone overcome Akathisia while still on the offending meds. I’m not a doctor and cannot give medical advice, but you might
      consider talking with his doctor about getting him off some of these meds. Personally I don’t believe in any of them, but I don’t see how they expect to give a handful of meds like this and expect someone to fair well with such a cocktail.

      He can try multi vits, vit B6 and CALM powder (mixed with warm water as directed on the bottle). But I don’t know if they’ll make any difference considering what all he’s currently taking.

      Do you mind my asking what he’s taking all these for?
      If you’d like to talk privately instead, make sure the email you are using for this site is the best to be reached at and I’ll contact you and give any support I can.

      All my best,
      Angie

    2. You could try The Road Back Program that provides nutrients & supplements to counteract the symptoms of Akathisa,they target what this dreadful side effects has on the body to bring it back into balance.It is not a quick fix by any means,but the supplements will slowly get your body back into balance,other things that have helped me with Akathisia are high doses of Vit B6 (between 600-1200mg) daily,1000mg Lecithin, Cal-Mag tablets or powder & also NAC (N-Acetyl Cysteine) which all work for your brain to combat Akathisia.Hope this helps people.

  16. My name is Yasmin and Im 29 years old. Im dealing with what I believe to be akathisia since january 2014. All started in may 2013 when I got extremly nervous about my final exams. Doc gave me some ativan that I took on and off till october 2013.

    1. In october I begun to get anxious for no reason. So my Gp gave me prozac for depression. After two weeks on them I got the most horrible feeling of doom and restlessness. So I stopped it only to reinstate it a week after because I was feeling really bad. From then on it only got worse. Couldnt feel my toes burning in my arms and extrem anxiety Plus restlessness. I spent a weak at a psych ward but they only gave me more ativan and olanzapin which I only took once. After that I stopped everything I was on. And felt good for two months but then one day in march 2014 it came back really bad and stayed for a month in which I took cymbalta and lots of ativan. I got pregnant so I stopped everything again and was fine for almost three months but just a week ago it came back again after a course of antibiotics which I took for a uti. Its horrible to have akathisia again and being pregnant. Now Im on low dose of mirtazapine which seems to help. What Do you all think of this? Will it ever go away??

    2. Yasmin,
      I’m sorry to hear about what you’ve been going through. It sounds like you’re very sensitive to meds, which all of us here are as well.
      Psych meds are nothing to be played with and I believe the doctors have been irresponsible in doling out these meds in all different which ways
      to you. I think now that you’re no longer taking them you will find balance. The key is, when you go through another spell of anxiety, or a reaction
      to a medication, DON’T let them just throw more offending meds at you, this is clearly only going to make things worse. Residual intermittent anxiety is
      common once you’ve had Akathisia, so just expect to get it again, but know it will pass. Please follow some of the suggestions here on the site for
      calming your body and mind. It WILL help. You might also want to check out Claire Weekes on Amazon, her work is very helpful for basic anxiety and panic, which I think you’re also dealing with at times.

      Ask your doctor if Natural CALM drink powder would be acceptable while pregnant. It could help out quite a bit as well.

      Keep us posted, I wish you all the best.
      Angie

  17. Mine started after Depot injection from hospital probably Haliperidol and died down after 8 weeks which is how long it takes for the depot injection to exit the system.

    As I was told it takes 8 to 12 weeks for the depot injection to exit the system.

  18. First I would like to say thank you for having this blog. The more we can educate ourselves the more proactive we can be with our own health, and the more we can communicate directly with each other about our experiences, the more we empower each other to find the truth about our medications and illnesses.

    I don’t have to describe my symptoms as they have already been described by so many. I have been living with them for over 10 years now. Unfortunately I didn’t know what Akathesia was, nor did any of my doctors. I spent years going to a psychiatrist for what I called anxiety “type” symptoms. I had always made it clear that I wasn’t actually worried about anything, that I was only feeling the physical sensations of anxiety. Looking back, I think it was a pretty spot on description of the beginning stages of Akathesia, but I was told that I must have anxiety. So, I found a psychiatrist who then put me on a number of drugs, each of which, only seemed to worsen my mood. In general, I am medication sensitive and avoid medication for the most part. I was eventually hospitalized for severe depression, a diagnosis that eventually turned into bipolar disorder II. I was again put on a number of antipsychotics, mood stabilizers and such, that either aggravated my “anxiety” or created some other intolerable side effect. Nothing was helping and my mental health had deteriorated rapidly. I had lost 20 lbs (down to 115), regardless of the many medications that supposedly would cause weight gain, I wasn’t sleeping, and life had become unbearable. I saw a number of doctors, psychiatrists and therapist, all of whom I told about my anxiety. In fact, I began to call it my “non-anxiety anxiety” and proceed to explain to anyone who would listen. I knew that what I was experiencing was not anxiety but no one told me any different. I find it amazing that I saw so many professionals and not one knew what I was going through.

    To make things worse, I suffer from chronic migraine and many of the medications used as a preventative are the same used to treat depression and bipolar disorder. Most aggravated my Akathisia to intolerable levels. Any drug that has ever helped my migraines also left me a messy heap of tears and unable to get out of bed. With each drug that I have tried, it seems that my akathisia has become worse. While it used to lessen, to the point that some days I barely notice, now I rarely see a day as such.

    I did have a break for awhile when I stopped all psychiatric medication and started a vitamin supplement by a company called True Hope. Going off my medication was a personal decision and not one that I would recommend unless you are very ready for a diligent life style. I didn’t just go off meds, I completely changed my life including diet, exercise and on going therapy and support groups, so that if I did start sliding down hill, there would be people in my life who would notice and tell me. Call the hospital even, if needed. Durning this time I felt my best, although I still lived with milder symptoms of Akathisia, the depression was gone and I had gone back to school full time. I slid back after being given a medication for my migraines that caused severe depression and Akathisia. Long story short, I went back on medication.

    It wasn’t until a year ago that presented my neurologist with the term Akathisia, (something I came about on the internet) and he agreed that it was probably what I was experiencing. I also ran it by my psychiatrist who also agreed with me. (I pay these people so that I can spend endless hours researching something they should know)

    I have since seen a movement disorder specialist neurologist, the guy I should have seen 10 years ago. Unfortunately I am probably stuck with this for the rest of my life, this late in the game. I just hope that those of you out there that are going to something similar, do not be discouraged by doctors who don’t know jack. If your doctor can’t help you ask for a referral to a neurologist. Even better, a movement disorder specialist. I also recently had pharmacogenetic (sp?) testing and found that I do have some issues producing the enzymes needed to metabolize many of the medications I have been given. This could be part of the reason I experience Akathisia so often and as a common side effect to so many medications. Research Cytochrome P450 enzymes and genetic testing for more information.

    My current goal is to get back off medication.

    I know that we are are rare but we are still many. As far as I am concerned Akathisia is a deadly disorder and if you have experienced it, you know why. Thank you for reaching out with your blog.

    Many Blessings to all:~)

    1. Jasmine,
      Your story is harrowing. Most people suffer with Akathisia for weeks or months, some a year or so, but 10 years. I know you must be so exhausted, to say the least. It sounds like you’re finally getting some REAL answers that may help guide you out of all of this suffering. Please keep us posted with how you’re doing.

      My thoughts are with you,
      Angie

    2. I don’t know if this will be of any comfort, Jasmine, but it’s likely your akathisia was “refreshed” every time you switched to a new drug. There is hope you will recover eventually, but drugs will not be the answer for you — they are the problem.

  19. Hi All – SO sorry for all who are dealing with this horrible thing called akathisia. To give you hope – I feel great now, and it’s been several years. Please hang in there! It WILL end! I’ve had akathisia several times over the years, each time when they’ve given me compazine in the hospital through an IV. I would immediately start rocking back and forth, but of course it’s more internal than external. Never have felt anything remotely like it except when on compazine or phenergen. During one experience, the doctor gave me benadryl, saying it would be the antidote, and it stopped the rocking but not the internal torment. Docs then thought I was fine! I just couldn’t talk to tell them otherwise – was just stuck in this little akathisia world. The final akathisia experience was when I was admitted to the ER with a stomach flu. My husband told them to make sure NOT to give me compazine. The doc said she HAD to in order to control the nausea. You guessed it, I started the rocking back and forth. Dr. said, “Make sure they never give you this again!” Yeah, thanks:) Unfortunately, this time the akathisia persisted for several weeks. I was petrified it would never go away. You are all correct – akathisia is a real “thing”, but is unfortunately poorly understood in the medical community. My mother in law, a nurse, is not too familiar with it and had understood it to be merely a movement disorder. I’ve tried explaining it to friends, but it’s really unexplainable. We belong to rather an exclusive club, don’t we?;) Hang in there, all – try the CALM as well as all the other tips Angie has shared. One other thing that helped a lot was swimming laps. During my 6 week akathisia adventure, I scheduled things throughout the day that helped the tiniest bit, to give me something to cling to. Every evening I’d swim laps for 1/2 hour, and afterwards felt a bit of serenity and relief, almost “floaty”, at least for a short time. It definitely helped, at least a bit. Not sure why! I also cannot take phenergan. They sent me home with some, saying it should not cause akathisia, but it DID. In desperation, I tried a xanax (I don’t take these but a friend gave me one in an desperate effort to help) and interestingly, after a short time I felt pretty good. Maybe something to ask your doctor about. Unfortunately, my daughter has also experienced akathisia in the hospital (while away at college). She described it to me several weeks later, and I said “Oh honey!! I know what that is!”. I’ve told her it’s called akathisia, and to try to utter that word to the doctor if it ever happens again. This week she was back in the ER (she gets kidney stones) and they sent her home with some reglan, which she tried. They said it shouldn’t cause her akathisia, but unfortunately she had an episode which lasted just a few hours, but at least it wasn’t as bad. Nothing is worse than akathisia than watching one of your kids go through it:( Anyway…hang in there everyone – you’re not alone. You WILL get better. That rings very true that your brain wants to heal. But somehow, there needs to be an awareness campaign in the medical community. My nursing friend told me they rarely give compazine anymore, so at least they know something is going on. Sending prayers, good thoughts, etc out to each and every one of you. Wherever you are, and especially if you are going through it right now, we are with you:)

    1. Kathy, that was beautifully put and I’m sure will be very comforting and helpful for many readers to come : )
      Thank you.
      Angie

  20. Thank you, thank you, thank you. I’m in my third straight month with akathisia. You have put into writing exactly how it feels. Most people medical or lay don’t understand you or believe you. You get dx with anxiety or other psychological ailments. My akathisia was brought on by the drug Reglan and I had the same reaction to compazine where I missed a connecting flight because my body felt frozen. I am now in the process of weaning off huge quantities of narcotics given to me for the pain and it’s been a nightmare. You’ve given me hope there’s light at the end of the tunnel. My support group feel apart because of my irrational behavior due to the narcotic withdrawal. I made the mistake of going cold turkey on klonopin and went through full withdrawal. Nothing I would recommend to anyone. So now I take not day by day but minute by minute. To add insult to injury I’m extremely malnourished and have lots 70 lbs in the last year. In March I had abd surgery to fix that problem; but I am left incredibly weak. Often when I pace, I found myself on the floor from exhaustion. So, I am taking it moment by moment. I’ve weaned off the time released narcotics and have about two weeks to go on the instant release. I try and meditate. Thanks again for putting your ordeal in writing.

    Pam

    1. Pam,
      You’re welcome. I’m glad the information helps : )
      Thank you for adding your experience as well, and keep us posted on your progress!
      Weight loss goes hand in hand with Akathisia, but in due time you’ll regain the weight.
      Be sure to keep your diet as clean as possible to help the healing process; primarily,
      avoid sugars and eat lots of good, organic veg.

      My thoughts are with you,
      Angie

  21. Hello

    I just wondered if anyone here had heard of or tried Procyclidine? I was recommended it today as an effective treatment for akathisia.

    I’ve never heard of the drug before.

    1. I’ve never heard of it either.
      If anyone has, please reply to Bryony’s comment…

    2. Oh thank goodness i found this blog. My husband has developed akathisia and it is living hell. He had been prescribed Geodon for anxiety/depression. Within the first month of taking it he had tremors. Pdoc insisted he would “adjust” Pdoc upped the dose. Husband ended up in psych ward for suicidal thoughts. Doc said he would “adjust” Spouse kept getting bouts of excruciating chest pain that landed him in the hospital twice and ER twice. Cardiologists said his heart was great. I kept telling him ITS THE MEDS! After last time in hospital all the docs AND the psych on call agreed that the only common thread was this Geodon. ( WHICH IS FOR BI-POLAR and SCHIZOPHRENIA) Went through two weeks of withdrawal hell. Now he is on 10mg Lexapro which seems to be working well for him mentally, but this akathisia is horrific. He has done the Klonopin, Benadryl route. We do actually have CALM which he has taken in the past. I will start giving this to him twice a day. I already give him detox greens/alkalizing greens plus a high protein weight gain shake three times a day as he as lost 30 lbs and has no appetite. My biggest concern now is that he doesn’t seem to be able to feel that THIS WILL END. At some point. All of your comments have given me much hope. I am going to go try now for the fourth time this morning to get him out of bed and talk a little walk. He does listen to music which he says helps him greatly ( any of the Solitudes by Dan Gibson – thank you Amazon) But any other ideas would be welcomed. His Pdoc told him to double the benzos and “suck it up”. We are trying VERY hard to keep the benzos to a bare minimum as goodness knows those withdrawals suck too.

    3. Lindsey,
      I’m sorry to hear what your husband has been going through. He’s very lucky to have you there by his side understanding and helping in every way you can. That will make the whole healing process much easier for him : ) I think a good multi vitamin and B Complex, ones derived from whole foods, rather than synthetic ingredients are ideal. You can get them at Whole Foods Market and probably on Amazon. There are a couple main brands out there.

      It sounds like you have him on a good regimen otherwise.

      You could get him a copy of the DVD Documentary “HAPPY”,, that explains how the brain regulates mood and may give him the understanding and hope he needs right now.

      If he is open to it, healing guided visualizations/meditations are helpful for sure.

      Keep us updated..you have support here.

      Best,
      Angie

    4. Thanks Angie! he is on good vitamins that I buy online, he also has guided meditations and right now is listening to binaural beats. I am going to go look online for that DVD now. I wish so badly I could get him feeling well enough to come sit with me and look through this blog. I know he is feeling so very alone, and knowing that there are (sadly) so many others suffering and making it though to a better place would give him some hope and comfort. If I find ANYTHING that offers him relief, I will be sure to share.

    5. Lindsey — I’m sorry, I need to tell you this — your psychiatrist is incompetent. Please find a new doctor as soon as possible, for your husband’s sake.

    6. I know! We have been completely left foundering by a “well-respected mental health professional.” I have already started searching for a new one.

  22. WOW. thank you for the excellent response. Yes, I do think that what I’ve been experiencing was akathisia. I was having kinetic movements everywhere in my body at a rate of several per second and it was akin to chemical torture. They were not involuntary movements either, it was an excruciating restlessness combined with panic and terror and incredible discomfort raging at every second, crawling through my skin. It was like a pain so deep inside the body that it had no location. It’s a very strange and unique sensation, not something I would wish on any poor soul. I also thought for a long time that it must be permanent as it felt like a continuous vibration for weeks and weeks. I had the exact same thoughts as you, thinking “death is the only way out.” I’ve had some relief now, so I do actually feel that my body is healing. I was freaking out before and felt I had been damaged permanently.

    When I think about the most anxious moments I’ve ever had in my life (that painful gut sensation), I have to say that the akathisia terror stints were much more extreme. They seemed to feel almost unlimited and horrified my nerves. It was unlike anxiety which is more like heart-rate, flushing, sweating. I am really glad that I’ve found this blog, and the one piece of advice the neurologist told you “Your body wants to heal” is exactly what’s kept me able to cope. Sometimes it feels that the restlessness is so bad I want to start shaking all my muscles at once (like they want to jump) but anything that excites the nervous system seems to worsen it. When I’ve had a bad bout of akathisia, I just take a big dose of propranolol, retreat to my room, lay on my stomach and try and calm down. Anything that calms the body will relieve the akathisia slightly.

    Also, I think compazine is waaay more anti-dopaminergic than abilify, and atypicals tend to be milder with these side effects. Still, let me know if what I’ve been referring to sounds like akathisia to you because my doctor doesn’t seem to know. You’ve done a great service to people suffering with this horrifying and almost unobservable side effect. All it took for me was to stumble across it. Thank you!!!!

    1. Yes. It sounds like Akathisia. Akathisia is often mostly mental, that horrifying restlessness and sense of doom and hopelessness with extreme agitation. But can also include the physical as well; physical agitation, inability to sit still, sleep, etc. tight extremely rigid muscles, marked decrease in vision, and a whole host of other sensations. The doctors often just tag it sudden onset of RLS, but that’s a bunch of bull. They always want the quick and easy way out and to take the blame off their precious drugs. But it IS the drugs in nearly every single case I’ve encountered and the doctors need to take responsibility for doling them out indiscriminately.

      But until they do, we all need to work together, be proactive in our own healthcare and avoid further damage.
      Healing takes place first with you. You take the power back and find the answers that best suit your own body and mind.

      We’re growing a good community of people here who are willing to emotionally support one another and share advice and experience.

      Stay in touch through your healing journey and be sure to post your story once you’re 100% better so others can benefit from the information. : )

      All my best,
      Angie

  23. Starlight, this is wonderful!! I am so pleased for you and it gives me, and I’m sure many, many others, so much hope. THANK YOU!

  24. I had this and I healed. 17 months on 20 mg of Celexa, 30 day taper and then HELL. The hell decreased for three months but then came back which is known as Phase 2. Akathisia for 90 days non stop. Horrid insomnia, Parkinson’s like tremor, stopped eating, was choking down food and water on schedule to stay alive, felt like I was 100 years old. I stopped ALL supplements, sugar, white flour, alcohol, caffeine, loud noise, insensitive people, no tv except some light travel shows, no books except light and positive reading, took 6 weeks off work. I did stay on my fish oil throughout all this. Worst experience of my life. Medical docs at UC Davis were not only shockingly ignorant but actually harmful. Refused to listen to my symptoms, made up that I had illnesses that I did not have. My acupuncturist listened, made sure he didn’t do anyhting that was too stimulating, did not give me herbs. I gat away from all the doctors and ate lots of greens, fish and some chicken, used you tube videos with whale sounds to get rid of the tinnitus I had. As a result, here I am, 20 months later, 100% recovered. Some people take longer, some shorter. I believe that I was able to heal myself because I took control away from the doctors and refused ALL their drugs. Mindfulness helped, faith that healign comes in waves and windows. Some walking every day, even if it was only 1/4 mile. Then I walked longer and longer. Now I can do an hour. Three months ago I added yoga. Now I go to 4-5 yoga classes a week. My acupuncturist was pretty scared for me, he admits now. One day he said to me ” I believe you will come back, stronger and better than ever”. I clung to that and he was right! I send that wish for healing to all of you. Live as clean as you can. Don’t drink, don’t smoke. I have been able to have one glass of wine or one beer every now and then, but only since my healing is done. I’m never quitting the clean eating and yoga and I am healthier than my doctor who is 22 years younger than I am. Be well.

    1. Tara,

      Thank you so much for the thorough recount of your experience! This is wonderfully helpful and uplifting! I’m very glad to hear you have made
      100% recovery and that you had someone on your side, working with you. That’s so important.

      Thank you so much for taking the time to share your story.
      All my best,
      Angie

    2. Starlight. Thank you! Your comments were so informative & helpful! Yes, Phase Two! The worst seemed to let up just enough for me to get downstairs & outside to sit on the porch every now & then, rustle up something to eat, do a couple of dishes but now I seem right back to the worst & just feel the stress of it all taxing my heart, my whole boy & truly feel I am dying slowly. If I only had SOME help – to eat well & hydrate, I know I can get back to actually WANTING to eat, juicing, staying busy enough to quit these smokes. But for now it’s sleep (thank God!), hydrate, force myself to eat anything & distract on-line, a little research when the mind co-operates – checking out this Thyroid Summit the have going – great info, even may have found a doctor or 2, but getting a shower & dressed? actually getting to the 2-3 month wait apt if I can get it – just impossible right now. I am so afraid NOT to act but just have NOTHING left in me. PLEASE, peeps, do NOT suggest: “just do…” when I say NOTHIMG, I truly mean that, no drama, no word play.I know myself, my body, I am strong & wise, but it’s all on hold.
      “Choking down food and water” – perfect description. I haven’t had an actual “meal” in so long – months. Once in a great while I will see something on FB – MEATLOAF! …w/ mashed & veggies, even gravy & my stomach just begins to feel like it is eating itself! The desire is so strong…then I may manage to get up for water or tea if it’s a good time, toast…longing, sigh.
      Trying to stay on tract here but keep wandering off (survival mode). Your post did give me some hope – afraid to even grab hope – AGAIN! lol I have been doing a lot of the same: no much of a TV person any way but do really have to control what I watch – sights, sounds, – ugh! Music – healing, meditative type, soothing when I can stand it. SO miss being able to meditate w/ my videos/cds. Funny, I said to myself/God one day: “Do I have to be completely stripped bare of everything & just “be”?” …it seems to be that way.
      I do have other mitigating health issues that WERE manageable before the 1st bout of side effects/withdrawal/repair. Had some def recovery, even a good day or two – learned a lot, accepted, just stayed in the moment. This 2nd time around is so much harder w/ no one, not one single person to help…this IS a matter of life & death, I truly believe. But I’d rather die than go to “the doctor, hospital or nursing home” as has been suggested by places I have called.
      I’m going to stop. I’d like to talk w/ you more as we seem tobe of the same mind but I’m rambling & in SOS mode. I hope you stay in touch? ❤

    3. Ciannaweb,

      Akathisia can last anywhere from a few hours to a few years, depending on your particular brain “wiring,” how long you were on the offending med, what type of med and what you do thereafter for helping your body get back into balance. It TOTALLY varies and there’s a lot you can do to help along the healing process. No one can really compare to another as far as how long healing will take.

      All my best,
      Angie

  25. Hey, I took abilify for 3 months and over this period the restlessness and anxiety seemed to get worse and worse until finally I had true akathisia. Worst thing I’ve ever experienced. Anyways, now I’m 5 weeks off abilify and the tremors and akathisia are still there to a moderate degree. I’m on 80mg propranolol a day and it doesn’t seem to work that well. My akathisia still purges through most of the day. I have no idea how long this is going to last or if it will ever go away. I know for many people it does but it’s hard to see the end in sight. It’s like chemical torture and I’m not sure what I should do.

    1. Kieran,

      Did you read the blog post here that gives suggestions? There are many natural ways you can help your brain get back in balance.
      I’m going to update this section sometime this week so it’s an easier read. So check out what’s here and then check back next week
      to see if there’s anything new you can use. Keep us posted on your progress. There IS an end in sight and you will get through this.

      Best,
      Angie

    2. So, was the described experience from a single dose of compazine? Also, two days ago I wasn’t experiencing akathisia and I had exercised and eaten properly that day. Now it’s back today. It seems that any amount of stress or anxiety increases the surges of restlessness and discomfort. My doctor said it doesn’t make any sense because I only took abilify for a few months. His advice is often vaguely knowledgeable like that. I’m glad a lot of people on here said that it eventually healed and their brain chemistry returned to normal. It does appear to be healing on account that 4 days ago the restlessness was unbearable even at 80mg propranolol. I don’t understand how akathisia can go away for a day and return though – brain chemistry is very slow-changing. My doctor said I may have developed restless leg syndrome coincidentally but to me abilify is the prime suspect. I can’t remember having unbearable surges of restlessness and panic even though I do have issues with anxiety. My mom thinks it’s just anxiety as well, but she hasn’t taken psych drugs. Any advice or info is appreciated. Thanks.

    3. Kieran,
      Yes, one dose. Anyone telling you it couldn’t be Akathisia is either ignorant or covering up what they know to be true so they aren’t liable.
      Regular anxiety doesn’t feel anything like Akathisia. I describe Akathisia as a panic attack x 100. Easy to blow it off as an onlooker, but
      anyone experiencing Akathisia can CLEARLY tell you it’s not the same thing as anxiety, at all!

      Just do what you can to keep on the healing track and nevermind people who don’t understand. Most people ultimately end up taking this journey
      alone because there’s simply no public awareness about it. Which is why I created this blog. : )

      See if you can find a naturopath or acupuncturist to work with you, they are actually much more knowledgable and/or willing to admit, talk about and treat long term drug reactions and brain imbalance.

      Keep us posted with how you’re doing and feel free to write when you need support or have questions.
      See the other post on this blog for suggestions.

      PS – It’s very promising that you have really good days, from what I’ve seen that means you probably won’t be dealing with this nearly
      as long as some do.

      All my best,
      Angie
      body and mind work as a whole.

    4. Movement disorders, as well as akathisia, are a known adverse side effect of Abilify and other atypical antipsychotics. Your psychiatrist is telling you it’s something else because he doesn’t want to be held responsible for this. Yes, you can get this from one or a few doses.

    5. I wouldn’t say I’ve fully healed, but I’ve made progress. It’s more disconcerting now than anything. My legs get all restless and I feel very antsy unless I’m moving around. I think I will eventually heal at least 95%, but for now it’s more like 80-85%. I took valproic acid for a month for mood stabilization and it helped a bit, though I’m discontinuing now due to side effects. I should go back to work soon, it’s just that it requires a lot of staying in one place. What an evil side effect this has been. Tell the world.

    6. Just wanted to update on my husband’s akathisia nightmare. Last week his tremors became so violent ( Geodon withdrawals) he couldn’t walk and fell. Took him by ambulance to ER. Two shots of Cogentin, one shot of Atavan and he was still kicking like mad. After eight hours docs wanted to send him home. REALLY??? I asked for a psych eval, as he kept wanting to die. After much more back and forth they decided to admit him to the psych ward. Head psych doc assured me she knew all about akathisia and could fix it. Idiot me. But I was so desperate myself for some relief, and the fact that my husband had had several bouts of suicidal thoughts were wearing me out. ANYWAY. One week in psych ward. Some relief. BUT. She put him on ZYPREXA!!!! Another one of these damn anti psychotic drugs with horrific side effects. Got him weaned off the benzos tho. When we had a meeting for his discharge, she looked right at us and said ” ALL OF THIS IS IN YOUR HEAD. THERE IS NO WAY GEODON COULD HAVE CAUSED THIS.” ( bangs head on table) Way to go doc, make my husband feel like a useless, anxious idiot. Visit regular doc. She notices he still has tremors and can’t hold still. Also bad memory and focus. Go to therapist. Same thing. Visit new psych. Who IMMEDIATELY looks at my husband and his history and says “I want you to take half this dose starting tonight.” So here we go again, weaning off this crap. But I will tell you he takes CALM, All the B vitamins. Really careful diet. Gentle exercise. And although it is one step forward and two steps back, there IS some progress. I think it is going to take a long time. What a freaking, Time-sucking, life-wasting experience!!!! I am so shocked that these drugs are allowed on the market. Our life will most likely be impacted in many ways. I doubt he will be able to keep his job. But will deal with that if it happens. All we want is to feel “normal”

    7. I’m so sorry for the misery you both have been through. It’s astounding that these pharma companies and doctors won’t step up to the plate and take responsibility for what they’re causing! It sounds like he’s finally on the right path toward healing and has some proper professional support. I’m just glad you’ve found someone willing to admit the cause and try to help him get back to an even keel. Please keep us posted.

      All my best,
      Angie

    8. Please put in writing your complaints to each of the ignorant psychiatrists you’ve seen. They need to get feedback about their ignorance.

  26. Hi Linda

    I am so sorry you are going through this. You have been through so much and all because you wanted to quit smoking.

    I am thinking of you and everyone else here. One day we will come here and post success stories.

    And you’re right, Angie is an angel.

  27. TYTYTYTYTYTYTYTYTYTYTYTYTYTYTYTYTY!!!!!!!!! I could have wrote this and then some. After years of off & on Akathasia from the medications I was taking, I found a doctor who actually knew what was happening to my boy & mind. I found him after being released from the hospital due to reactions to several drugs they gave me to counteract the effects of getting on Wellbutrin — TO QUIT SMOKING! Healthy body & mind, I wanted to quit smoking & ended up in the psyche ward – the “One Flew Over the Cuckoo’s Nest psyche ward. My daughter & I talked my way out of there after a week – they did NOT want to release me & we fought, lied & acted our asses off. I had every intention on the way home to literally jump off the 1st bridge we came to – my poor daughter. SO I find this doctor, who explains Akathasia, says ANYthing I put in my mouth has to go past him first – food, OTC, medications. I had almost instant relief getting off the medications, but suffered from a complete physical & mental breakdown due to the lack of sleep, food & the effects of the Akathasia & medications. He talked me into EmSam, the patch, which indeed did save my life. After 2 yrs now.it or my body has turned on me & I was suicidal again. Thank God for my across the country FB friend who spent endless hours on chat w/ me, accepting, calming, letting me talk through it. The depression was coming from “somewhere outside myself’ – that I knew. It was not situational, emotional, I’ve been there. I’d have a great few days then out of the blue, w/i hrs I’d be in the depths of hell wanting to jump off the razor’s edge or fall neck down onto it. More research, days & days w/ my cognitive thinking seriously impaired. I found several indicators & one major key with the effects of the EmSam – the “shoulder pain”. THAT was IT! I stopped it that day. It felt as if someone lifted the glass I lived under off of me, it was a whole new world. Almost instant clarity – 2 yrs ago I couldn’t pt a sentence together or think of the most common simple words. Now I had energy, I was actually doing things, cooking, eating,cleaning, joyful. Which is still happening to a milder degree, but the Akathasia has returned in the evenings… As through all of this – w/ arthritis, fibromyalgia, emphysema, hypersensitivities to so many things, losing every single person in my life and doing this alone for the last 18 months: IF there is an answer, a fix – I WILL FIND IT. I am so glad I found you – 1st post when I started my search this a.m.! Angels are constantly sent to me…I ask, see – they appear. I am blessed. There is a reason I mst go through this & I accept that on faith. I am, as Bon Jovi sings: “An Army of One”. God bless you, I am in tears of joy & trepidation with reading your article. Once again…I am off…! (Y) Wish me luck! ❤

    1. Linda,

      Thank you so much for sharing your story. Most people don’t realize what bravery it takes to get through Akathisia, let alone publicly sharing your story. You don’t need luck, you’re strong and you WILL get through this to completion. Patience is your greatest ally : )
      If you have any questions or I or anyone on this board can be of help, feel free to write again..

      All my best,
      Angie

  28. Angie- Thank you for starting this. I wish I’d run into in earlier, and I hope that this gets more people to talk about their own experiences.

    Altostrata- I was told about the rarity by a pair of psychiatrists, one of whom specializes in treatment resistant depression and akathisia. My understanding is that akathisia officially (from FDA numbers) occurs in a fraction of a percent of people taking SSRI’s. It’s likely underreported, but even so the overwhelming majority of people on these drugs don’t experience akathisia. That being said, even a fraction of a percentage of the millions of people that take SSRI’s adds up to tens of thousands of people. In that sense, it’s not rare, though severe akathisia is again only a fraction of those cases.

    I was told very bluntly that odds are I would never meet anyone in person who had been through severe akathisa. I haven’t met anyone outside of psychiatrists who have even heard of akathisia. I think that online support is incredibly important- no one is alone in this.

    You’re spot on with the serotonergic intolerence. I was given a long list of medications, including SSRI’s, SNRI’s, headache medications, nausea medications, sleep aids and so on that are likely to cause akathisia for me.

    Bry- I hope that if you do decide to try propranolol it works for you. I’d be interested to hear if it’s helpful for other people and what their experience with it is.
    Hang tough, you’ve got a lot more story to write.

    -Mike

    1. Mike, Thank you for the info. It could be a big help if you could post the list or send it to me through email and I can type it into the blog.

    2. No matter how highly placed, psychiatrists would be the last to admit the frequency of a severe adverse effect from the drugs they idolize. For many cases of akathisia, see http://tinyurl.com/3o4k3j5

      People usually don’t know what to call it, they go to their doctors with it (docs don’t have a clue), get misdiagnosed with anxiety or something, and prescriptions thrown at them.

  29. Mike, thank you so very much for recounting your experience with akathisia and sharing it with us. I am so sorry you had to go through it. It gives hope to those of us suffering with it that it does go away.

    I’m really glad to hear that propranolol helped. It’s something I’ve been thinking of trying.

    I am thinking of everyone here who is going through this.

    Thank you, Angie, for this wonderful blog and all your care and support.

  30. I’ve spent a good deal of time searching for anyone who has had a similar experience with akathisia. I feel bad saying that it’s a relief seeing that other people have been through the same thing- I wouldn’t wish akathisia on anyone, but I think it’s important for anyone going through a trauma to have support. I’ve wanted to tell my story, to learn what was unique to me and what was similar to other people, to have some way of making what happened a part of my new normal. I’m glad I found this.

    It’s been about nine months since I’ve had any symptoms of akathisia. I’ve had akathisia a number of separate times. I’ve struggled with social anxiety and depression since childhood. The first time I probably went through akathisia was fortunately only mild akathisia. I was in middle school and put on a low dose of an antidepressant. I started standing up and going to the back of classes in school to pace back and forth or pumping my legs when I had to sit. I went of the antidepressant after a short period, and a short time later I stopped pacing. I didn’t make the connection between the two until years later.

    My second experience was in college. I went on Abilify to try to manage my depression; I had tried a traditional antidepressant but my depression was rapidly worsening and they wanted to get more immediate results. I had a reaction within hours of my first dose. I started standing up, then sitting back down, and then standing up again. Nothing was comfortable, nothing felt good, nothing was satisfying. After a while there was a horrible feeling of dysphoria. It’s incredibly hard to describe to people who haven’t felt it before. My best description is that it feels like suffocating constantly, like trying to inhale with plastic wrap over your face, like being held underwater as your brain shouts for you get to the surface. That feeling envelops your entire body, your entire being, and there is no surface to swim to. You feel that same sensation every second that you are conscious.

    I only managed about an hour of sleep the first night; it was broken, tortured sleep. I had spent the entire day trying to move, and I finally succumbed to sheer exhaustion. I fortunately made the correct decision and stopped taking the Abilify. Over the next day, my symptoms lessened. I didn’t sleep at all the next night; I stayed up and talked with friends for the entire night. Things were at a point where I could hide what was going on. The next day things were back to manageable, I could sit if I pumped my legs every now and then. That was my adventure with moderate akathisia. The doctor I was seeing penned it up to a bad reaction to Abilify. I didn’t have a clear picture of exactly what had happened, but that was the first time I heard akathisia and extrapyramidal effects mentioned.

    About a year ago (now in my twenties, a college graduate working in a professional field), I was put on a new regimen of medications to combat a worsening bout of depression and trouble sleeping. I started taking Zoloft and Trazodone. It took a couple days for me to start feeling the symptoms of akathisia, but they rapidly intensified. I had to move constantly. I could sit for periods of time if my arms and legs were moving, but eventually that wasn’t enough. I had to stand up, to walk, but that didn’t really make things better, I just had to do it.

    I had at least some basic awareness of what was going on and was quickly put in touch with my doctor who discontinued the Zoloft. Unfortunately, my doctor increased the trazodone to help me sleep (I was unable to sleep at all without it). Akathisia from antidepressants, particularly Zoloft, is rare and even rarer at a dose as low as the one I was on. Akathisia from trazodone is even rarer, and my doctor hadn’t considered that both medications were responsible. Things kept getting worse. 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. I don’t know how I lived through it. The akathisia came in waves, building through the course of the day.
    I managed to stop crying long enough to call my doctor again, and within 35 minutes I had a prescription for propranolol called in, filled, and in my hand. As an aside, pharmacists work much faster when they have someone shaking and crying in the waiting area. Propranolol took 23 minutes to kick in for me, and it was like running cold water over a burn. It didn’t make everything go away, but it made things feel better. It made life liveable; I could function. I was also told to immediately stop taking trazodone. It was still a living hell for the next couple of weeks as it worked its way out of my system. I used propranolol and Benadryl (which also helps some people with akathisia) to sleep at night. Waking up was the worst; the propranolol wore off completely during the night. The doctor I was seeing diagnosed it as severe akathisia as a result of Zoloft and trazodone. I got an actual explanation of what had happened, why it had happened, and the risk of it happening again.

    I went through akathisia several more times, though very mildly and with propranolol at the ready in an attempt to find an antidepressant that didn’t give me akathisia, but I was not successful. I started getting reactions long before I even got to the normal starting doses. I went into it understanding the risks and because I started on very low doses it never got bad. I was uncomfortable, but it was like holding my breath for ten second as opposed to suffocating. I could ignore it and go about my daily life.

    I’ve thought about akathisia multiple times per day every day since my severe episode. It took around nine months before I was able to sleep through the night uninterrupted, and I still have trouble with sleep. I’ve had nightmares that wake me up, fully alert with my heart pounding. Most of my friends and family have no idea that I even went through anything. People I have told don’t really have much of an understanding of the scope. Sometimes I thought I was crazy, that it wasn’t as bad as I thought it was, that I was weak or a coward. I had times when it was incredibly difficult to be around my friends, and times when I felt completely overwhelmed by what happened.

    Things have also gotten better in a lot of ways. I’ve started working on how to talk about it with people around me, and I’ve been able to start reaching out to friends for support. I had amazing support from the psychiatrist I was seeing (ironically the one who made the mistake of increasing the trazodone), and I have been able to continue in therapy and make real progress. I still have my job, my friends, and I’m able to have an actual life. I’m getting back to doing the things I enjoyed beforehand, and adding new things to my life. Things aren’t perfect, but they’re not bad anymore. Most days I just feel normal again. I don’t think I’m “healed” completely yet from the traumatic nature of what I went through, but things are in a good place.

    I don’t take any medications right now, and I still avoid caffeine. I’m pretty paranoid about anything that I do take, but in my own experience propranolol was an amazing help. I’m also lucky to have access to doctors that have a very good understanding of akathisia and medications that are likely to cause it for me. If you’re going through akathisia or have survived it, you’re not alone. Things do get better.

    1. Mike,
      Thank you SO MUCH for sharing such a well detailed and personal account of what you’ve been through. This will be a great help to many people to come.

      Thank you thank you,
      Angie

    2. Who told you “Akathisia from antidepressants, particularly Zoloft, is rare and even rarer at a dose as low as the one I was on.” That’s a pile of baloney. Why do you think there’s a black box warning on SSRIs about suicide? See Rxisk.org about SSRI adverse effects.

      For some people, ANY serotonergics, prescription or not, are excessively stimulating. You seem to be one of them. You are wise to stay far, far away from psychiatric drugs (and LSD and MDMA — they are serotonergics — for the rest of your life.

      Countless people are injured by medicine’s denial of severe adverse effects from SSRIs. You are correct, we need to practice “defensive medicine” ourselves and minimize taking any of these drugs.

  31. I would like to put a call out to all the people who have been through Akathisia and since healed. If you would take a few minutes to write a quick synopsis of what you went through and how you’re doing now, I’d love to post it here to help those who are still in the grips of it. It will help them understand there IS indeed a light at the end of the tunnel. : )

  32. Hey I have had mine for such a long time after being prescribed medication, like effexor, prozac, and xanax….. I had to quit cold turkey and its been 9 months no SSRI’s or anti-depressants, but only about 70 or so days off the xanax…. can you shed some light? Will this get better????? I have been living with this and going to school and somehow managing but I don’t ever want to leave my house sometimes….. its gotten better but this feeling of constent tension and crawling out of my skin…. weird pains from nothing…..I just try and stay positive I guess

    1. JR,
      I’m sorry you’ve been going through this for so long. It’s not uncommon for it to last quite a while though, especially when you had been on so many different meds.
      It’s a great sign that you’re able to get out and about and attend class. Many people in the throws of Akathisia simply can’t function. So have faith in your body
      and brain and your ability to heal and get back to status quo. All of the symptoms you describe are common to Akathisia.

      Since you quit the Xanax, have you been steady the same, getting worse or improving?

      You will get better, it just takes time. I understand it feels like you can’t stand another day of this, but you can and you will
      and one day you will realize you are feeling back to normal. It’s just a bumpy ride to that day.

      All my best,
      Angie

  33. I found your blog after two years of what I think is akathisia, I was put on celexa and trazadone 10 years ago my Dr took me off celexa two years ago I am still on trazadone and have been on zanax as needed for the last 8 years. The akathisia is horrible. I have not found one Dr that is willing to even aknowledge what I’m going through. My question is, is there hope? If I taper off my meds, clean eating, supplements Ect…. Willing to do anything. I pray this is not permanent. Ive also tried phychatrists that just wanted to add more meds….

    1. April,

      I’m very sorry for all the suffering you’ve been through. There is ALWAYS hope to heal! The body very much wants to get back into balance. It is always
      working for you 🙂 You just need to create a nurturing environment from which to heal. I am not a doctor, so I can’t suggest how or if to come off the meds
      you are on, but a clean body always has a better chance at healing. Please do read the things on the blog post I’ve recommended, as well as, reviewing what
      others have gone through and done to heal.

      Angie

  34. Wow, weeks of searching have finally led me here and yes, I have akathisia, horribly! I thought I was going mad, relentless day in day out, pacing, moving my legs, and in constant overhyped fight or flight stress. It is by far the worst thing I have ever dealt with. I have been on a fair amount pain medication for years. Fentanyl patches up to 150mcg + oxycodone 30s every 4-6 hrs for breakthrough. It all got the best of me 6 weeks ago when I developed this condition…I ripped off my fentanyl patches and suffered horrendous withdrawals for a week. Unfortunately, the akathisia has persisted. I’m still taking the oxy and have been trying to ween down in hopes of getting off all of this junk as I truly no longer need it for pain. I had some Ativan that somewhat helped but ran out. I’m desperately searching for something to make this go away! Use to be that in withdrawal, if I took a small amount of the oxycodone it would help with anxiety, but not this time and that’s why its so frustrating. I got so desperate I have taken small amounts of my dogs seizure med, phenobarbital that actually does seem to give me some short term relief. Is there anything else I can do to tied me over untill Monday when I can call my doctor? Unfortunately I just figured it all out tonight in my total sleeplessness ever pacing, restless brain condition.

    1. Oh I’m so sorry to hear about the hell you’re going through Fred. The Akathisia often outlives the withdrawal.
      I’m not a doctor, so I can’t give medical advice, but I would avoid taking the pheno. You may just stay in this state
      longer by taking things you shouldn’t. That’s a STRONG med. Did you see my tips at the bottom of the blog? Get your hands
      on some CALM powder and drink that a couple times a day. Try every single tip you possibly can that I’ve listed.
      Sooooothe your body and brain and start a light detox to the best of your ability. If you need to talk send another comment
      and I’ll message you.

      Angie

  35. Hello, I have experienced Akathisia and the only thing that has ever given me immediate reflief was alcohol. This may not be a good idea for some but for others it might be a ok to have a drink or two after dinner just to give yourself that window of relief. Obviously drinking all day is not a good idea. I hope everyone gets through their experiences. Keep looking for answers and thank you for sharing yoor stories. 🙂

    1. Yoyo,

      Thank you for your input. I never tried drinking when I was dealing with Akathisia, so I have no way to voice my opinion. I know detoxing the body is very important and avoiding sugars and toxins, which
      alcohol is. BUT, if it works on some level, sometimes coping in the moment is necessary while the body is trying to get back in balance, providing there’s no rebound later. I went ahead and approved your comment because I want people to have as many options and ideas as possible. Though I can’t recommend this because I really don’t know if everyone would react well to it.

      All my best,
      Angie

  36. Hi. I’m so glad I found this. I’m pretty certain this is what I’m suffering from (suffering doesn’t even begin to cover it). Over four months ago, I started suffering from anxiety and depression. Back then, my main symptoms were nausea and retching and excessive fear. Back then, I was able to click in and out of it. 3 weeks in, I had a shock which made me worse. About 5 weeks in, I had a really bad day with my anxiety and decided to go to the doctor the following day. That’s when my nightmare began. I was prescribed Citalopram antidepressants, 20mg. I believe these have ruined my life. My depression and anxiety got much worse. I began to experience internal shaking in my legs, chest tightness, adrenaline rushes in my arms and legs, tightening of the jaw, swollen eyelids and my legs were covered in bruises. I was told the drugs would need longer to kick in. As time went on I got worse. I was constantly jigging my legs up and down. Everything was terrifying (and still is). It’s so hard to describe the feeling. I can do something simple like looking at my phone or trying to read something and I feel a sense of terror, dread and doom. It’s like being in hell all the time with no escape. I also had horrific head symptoms like all my thoughts were being squeezed and bouts of elation which were horrifying.

    I came off the citalopram and was completely off after 2 months. By this time, I’d been assigned a crisis team and a psychiatrist. On top of the anxiety and depression (which I would have overcome on my own without drugs) I now had a complete loss of sensation in my bladder (which I still have), shaking hands whenever I did anything (which I still have) and horrific feeling in my legs and the whole pelvic area which made me squirm and writhe around (which I still have). Of course the psychiatrist said it was nothing to do with the drugs. He said it was my anxiety and depression deepening. What a load of rubbish. Having had anxiety before, I know how that feels and techniques to use to help it. Nothing I did made or makes any difference.

    I was as good as forced to take more drugs which I’m on now. These were Sertraline (another akasthisia causing drug) and Quetiapine which can also do it. No one will believe me.

    Members of the crisis team would come to my house and tell me I must get out of bed and get dressed, and should do diversion techniques. Like I could do anything to divert from the horrendous feelings that were worse than hell. No one seemed to have seen anything like it before. I then started going to day hospital. I have no idea how I did it. I had to sit in a room with others, none who were going through anything like I was and do things like mindfulness and art. Trying to sit still in a chair was horrendous and it was almost impossible to think. I kept leaving the room and pacing the corridors. I was and am in constant terror with no respite. My only respite is sleep.

    After 2 days in the day hospital, I attempted suicide. I then had to go into hospital (I went in voluntarily to avoid being sectioned). Hospital was hideous and made me even worse. I managed to talk myself out after a week. I’m back home and still on the drugs – I’m as good as being threatened with a section if I don’t take them. I feel I have no control. I had just over a week after stopping Citalopram before starting my new drugs. I am so anti drugs. I have no choice but to sneak off them. My psychiatrist is not telling me how to come off them.

    So, just over 3 months have passed since starting the citalopram. My life has been torture all that time. Now, I have no sensation in my bladder so I have no idea when I need to go to the toilet, my hands shake with every action, sitting is horrendous, lying down is horrendous, standing is horrendous. It never goes away, not even for a second. I have horrific symptoms inside which I don’t know how to describe to anything. It’s like I’m carrying hell inside my body. It’s like a sensation of fear in my body. I’m terrified of everything. Terror is my permanent state.

    Yesterday, I took a Lorazepam and it did provide relief as it did when I took it on my first night in hospital. Of course, the psychiatrists say that proves it’s all anxiety as it helped me. What they don’t realise is that Lorazepam is used to help akathisia. When I sit, I’m jigging my legs around all the time and I’m writhing around. I have a horrible rigidity in my legs. I even feel all these sensations when I’m walking. Every second of my life is sheer hell. No one understands. They just think I’m not trying hard enough to get well and tell me to do things to divert my attention. Like that’s possible. In your post you said you used to think “I have to die”. That’s how I feel every second. I’m only 49. Am I going to be like this forever? I keep trying to persuade those close to me to let me go.

    It makes me sick to the stomach to think I’d be better now if I’d never taken any drugs and none of this would have happened. I was a positive person with a great life. Now I’m negative, not surprisingly, in a living hell.

    My only hope is coming off the drugs completely, trying to find someone who believes me, getting away from the medics who are trying to force me to take drugs, believing I can get well and doing everything I can to get over this.

    Thank you for posting this. It gives me a tiny glimmer of hope.

    1. Bry,

      I just read your post and it’s so upsetting. I’m very sorry for what you’re going through and what you’ve been through. Your descriptions of sensations are so familiar, it’s as if I could have written that myself when I was in the grips of Akathisia.

      There’s no way you are going to be stuck permanently with this! You weren’t taking meds for long. You may have to deal with these thoughts & feelings longer than you want to, and even longer than you think you can tolerate…but it WILL go away in time.

      I am going to send you a private message with more details and questions, so as to avoid sharing too much of your personal information online.

      All my best,
      Angie

  37. I have read your blog and have done some research and I think I am definitely suffering from Akathisia. I have been on many anti depression meds and anti psychotic meds for bipolar depression. I am not manic depressive at all. I was on Prozac for years and doing great until my father passed and I spiraled down very fast and ended up on the couch of a psychiatrist and I was put on a cocktail of meds…did fine but was always fine tuning the meds. long story short..I switched to a new Dr who just specialized in meds and she has tried different ones trying to get me off some of them. Then 1 month ago I started feeling like I wanted to jump out of my skin when I was laying down and watching tv with my husband. My heart would race and I needed to get up and walk. I took clonozapan to help and it does but still there. So of course my Dr. says she wants to try a new med for this anxiety and I told her no this was not my normal panic or anxiety issues…this is different so I went on line this morning and I googled my symptoms and I learned about this and it was ME!! I then read your blog and just knowing this might be what I have going on makes it that much better. I made an appt with my internist..he is awesome and I want off all my drugs and I want the healing to begin. I’ve been told that I will always have to be on some sort of medicine but is this true??? I pray to God not because I want to stop this feeling..I want to watch tv…sleep etc. I have written your suggestions down to talk to my Dr tomorrow…I hope he is well versed in this area. If not I will ask him to recommend a neuropsychiatrist Thank you for letting me know this can and will someday go away!!!

    1. Hi Dawn,

      I’m sorry to hear you’ve been suffering so 😦 I’m not a doctor, so I can’t possibly tell you if you need medication, or not. But if you
      feel Akathisia is what you’re dealing with, then you definitely should consult with a doctor who UNDERSTANDS and ADMITS to Akathisia.
      If your doctor doesn’t know about it, or believe in it, then find someone who does.

      I hope it simply is this and that you will heal quickly!
      Please keep us posted on your progress..

      All my best,
      Angie

  38. If anyone could who has suffered from akathisia could please TALK ON THE PHONE to my wife on a regular basis to help her pull through her akathisia it would be incredibly helpful as a personal support group. Please contact me by e-mail. This would be GREATLY appreciated. Thanks…alanstiebel@comcast.net

  39. Thanks for your fast answer!! i couldnt see you answered so fast i should checked it before.
    I read that propanolol is a fast healer? is that real? is also used in bruxism too 🙂

    following your advice im goin for veggies meat and so on. so sugar and carbs for me from now. honey is ok?

    1. Propranolol has helped several people I’ve talked with.
      It doesn’t work for everyone however, you just need to ask your doctor if you can try it and go from there.

      I think altering your diet for now is a great start. Not sure about honey, I found really any sweets made my
      situation worse. Just try it out and see how your body responds. Remember to avoid caffeine as well : )

  40. Hello, I suffering from terrible akathesia as well it’s been at least 2 months I found a therapist that understood what this terrible shaking was I’ve read in the posts that this will subside, from where I am at this point it just doesn’t seem like theres going to be any relief insight
    Reading this blog has helped it’s been so hard to sustain through this.

    1. Sandy,

      I know it’s hard to sustain! I’m so sorry you’re suffering. But everyone I’ve helped through this has healed. Some take longer than others,
      but everyone heals in due time. Please be sure to follow all the tips I give on the main part of the blog at the bottom..all of those things
      really help speed recovery.

      Also, I’m learning that Propranolol really helps quite a few people heal more quickly as well.

      Keep hanging on, you too will heal.

      My thoughts are with you.
      Angie

  41. im calos, im a young man 23 years old that from 2 years ago im sufferin what i think is kind of akathisia from meds (amphetamines), my main symtomps were:

    -sleepless , 1h a day for 4 months
    -tremor in my hands ,
    -Nonstop legs even when i was sitting
    -in the first 6 months cant-stay-quiet feeling, coulndt even lay on my bed
    -anxiety, depression in waves, and daytime and night bruxism.

    i hIave improved till that, actuatually my main problem is the night bruxism from that im gettin a lot of pain and my bit is changed
    its been like 18 months from that and i still have this bruxism issue.
    I read your blog and im interested to full recover or at least a 90% so i do not clench in the night.
    What can of diet should i follow to beat this?
    Should i take “buspar” a med for akathisa/ induced bruxism while im recoverin so i can slowly tapper it?

    any advice is STRONGLY gratefully , because im starting to think im going to be like this forever, and my life quality is getting worse.

    thank in advance and thanks for your blog.

    best regards (sorry my no native english btw :/ )

    1. Hi Carlos,

      I’m sorry to hear about your struggles with Akathisia. Really as far as diet goes, the cleaner the better.
      Fresh vegetables, lots of green vegetables, meat is okay. The carbs and sugar is where you will have problems.
      Drink lots of water, teas, no sweet drinks and avoid caffeine.

      Have you tried CALM powder? You add warm water and it helps quite a bit with feeling more relaxed and restful.

      I’m not a doctor, but from what I’ve seen, taking medications like Buspar could likely make you feel worse, not better.
      I’d stick to natural choices.

      All my best,
      Angie

  42. Hi all,
    I wrote on a couple months ago, mine was compaizine iv induced in May. I am my 5th month now and feeling better. One of many things that worked and advice from here that helped me is the propranolol. I already had slighty high BP so getting it from my dr for that was not a problem to get them to understand Akathisia. Now I am able to sit and eat dinner , spend time with family,enjoy my son and function at least 80% better. I take 10 mil in morning and sometimes the other 10 mil ( i break 20 in half) in afternoon depending how I feel. I also still take lorazapam what the dr will give me for anxiety but cutting back on that as I progress. Doing sauna to detox, working out, and just trying to focus on being healthy, plus the fear I had of being alone is slowly leaving me 🙂 these are things I could barely do a couple of months ago! Now dont take me wrong I still have bad days but they are not so bad or long lasting.

    I think if you can try this med is is well worth it!! Angie you are a God send, you are doing a greta job in helping so may others in ways you cant imagine…When your in the grip of this monster it is conforting to know you are here with so much great advice and guidance. xoxo
    claire

  43. hi my husband has this terrible disease can you be more specific naturally what worked for you will cut down on sugars (calm)? any help would be greatfull drugs not working anymore don’t like them

    1. Val,

      I’m sorry to hear about your husband. How long has he been dealing with this?

      I started feeling much better once I started this regimen:

      – Cut down on sugars and sugary carbs, even fruit
      – No caffeine
      – CALM twice a day
      – Slow, short walks once or twice a day to relax my nervous system
      – No TV or obnoxious music
      – No video games or other over-stimulating input
      – Lots of salt baths and baking soda baths to help with detox
      – Vitamin B6 (Some say this helps, some say it makes things worse, but seemed to help me significantly)
      – Natural progesterone cream, as recommended on label (Not sure if it would help for men, could try it and let us know how he does)
      – Relaxing herbal teas and green tea

      Keep us posted with his progress..

      All my best,
      Angie

  44. Hello I’m in the gtips of this awful thing, I’m 4 months pist an IV SHOT OF COMPAZINE. Still suffering bouts of horrible anxiety, restlessness and just this awful feeling of dread.,. The only way I can sleep is with Lorezapam. I like you Angie had mild anxiety before but nothing like this. I know that I am not the person I was. I look at pictures of life before that day and I cry because I want to be her again. I have been reading your blog for couple months and one person
    has reached out to me and has bern a god sent angel. But it seems like hete in the ladt werk it has returned with a vengeance. I’m seeing a therapist is familiar with it and gave me lorazepam as needef. Which is the only way I have survived or even slept. Once my eyes pop open in the morning I’m already anxious, its horrible. For few werks there I was having great days and felt there’s light at end of this horiffic tunnel.. I have to exhaust myself seems like everyday to rest at night. I’m tired of feeling this way. I’m taking vitamins, drinking lots of water, trying to detox. But I have had some things happen my daughtet went away to college, my biz not doing so great, worries over cash flow other things. Is that making it worse..I’m getting depressed at the thought of it lasting forever. Help,
    Thank you in advance

    1. Claire,

      I’m so sorry to hear you’re going through this. I have no idea why they don’t ban Compazine altogether, it’s very common for Compazine to be the cause of this.
      I’m glad to hear you’ve found comfort with one of the fellow blog readers, support can be a huge help, which is why I offer this blog.
      From what I’ve seen, Improving and then rebounding is not just common with Akathisia, it’s simply part of it, always. I think it’s even more distressing the
      further along you get, because you get a taste of feeling ‘normal’ again and then get slammed back into the depths of hell. It’s a stark contrast, and very hard
      to take.

      BUT, like I always say, and it’s true – You WILL recover. Totally. It’s just a matter of time. You may get better in two weeks, or it may take two more months, your
      body and your daily habits will determine the length of time. I wish I could give you a definitive date you will recover, but just keep in mind every second that you
      WILL fully recover.

      If you need to talk more just send a message.

      All my best,
      Angie

  45. I think I’m suffering from akathisia. Mine started after receiving a depo medrol steroid injection for sinus pressure on May 2, 2013 and I started having all the symptoms described above. The doctor has prescribed several antidepressant drugs in the past three in half months to relieve the symptoms but nothing has seemed to help or the symptoms seem to have gotten worse. I just got out of a stress center last week and was prescribed Mirtazapine and Seroquel. I have only taken it for a week and the symptoms seem to be about the same or a little worse. It feels like I will never get back to my old self. I feel like jumping out of my skin. Every morning its the same routine. This is the most miserable feeling that I have experienced. I have taken therapy sessions and can’t focus on the counselor or even sit still. I get panic attacks around my own son and family and I have been avoiding family as much as possible. My mom had surgery last week and I had to force myself to go see her in the hospital. I need a glimmer of hope. What should I do? Thanks Regina

    1. Hello Regina,

      I’m so sorry you’re suffering like this. It absolutely does sound like Akathisia, the main hallmark I see over and again is the sense that you will never get better and the desperate need for it to stop.
      Adding more meds to the situation is generally not a good thing. Your body is trying so desperately to get back into balance, the meds just keep that balance off kilter. I don’t, however, recommend you stop your meds altogether. But I would definitely talk with the prescribing dr. about maybe weening off and trying Propranolol or a totally holistic,natural approach to heal.

      Do the doctors recognize that it is Akathisia? Your road will be much easier if they do. If they don’t I recommend finding someone who understands Akathisia to help you through it at the clinical level.
      Many of the people that have posted on this blog, as well as I, are willing to help support you through it emotionally and with any advice we can give as well.

      I strongly recommend changing your diet up to a very clean, low sugar diet. I also strongly recommend you get CALM and start taking it once or twice a day. Magnesium can work miracles on lots of health
      issues, but really does aid the brain in restoring homeostasis. If you want to message privately I’m certainly available to you if you request it.

      Just know that these are AWFUL symptoms, of an AWFUL long term reaction, but it WILL go away in time. Every single person I’ve helped on this board has slowly, but surely healed. You need to know this above all else. You will heal and feel totally normal again. It just may take some time. It will go quicker if you do all things to mellow and balance your brain. I also recommend meditation, binaural beats can help, just don’t overdo listening to them. Also, taking slow, relaxing short walks when the sun is out is great. There are many ways to soothe your brain,, but I don’t want to throw too many things at you at once. A great place to start is cleaning up your diet, cutting out anything that disturbs the brain (ie- annoying or scary tv shows, arguing with others, video games, getting stuck in dark thinking patterns.) You need to do everything you can to keep an open, optimistic outlook and take good good care of your body. These things will give you a big jump on healing.

      My thoughts are with you and if you need more support please just ask.
      Angie

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