Are These Doctors REALLY Ignorant to These Drug Side Effects?

After receiving yet another email from a perfectly lovely, SANE person suffering Akathisia, who is not being heard or understood by their doctors, I just have to rant for a moment. This whole medical “care” model is so backward and damaging it doesn’t cease to amaze me. And this isn’t just here in the U.S. the same thing seems to be happening to people all around the world! The pharmaceutical companies have truly taken to ruling the world and there seems to be no end in sight. They have the doctors in their back pocket, because of $$$$, because they can. And those same doctors and medial “professionals” are very happy to marginalize, downplay, ignore patients who have any trouble with whatever pharmaceuticals they’re throwing their way and you can be sure if you have walked through the door of a doctor’s office, you WILL be prescribed pharmaceuticals of some sort.

I could go on and on about how messed up the whole healing model is with this form of “medicine/healing,” but that’s not even really my focus here. It’s simply a matter of doctors, and the like, feigning ignorant to all the tragedy their easy for them, damning for us, mode of “healing” is causing.

Here’s a copy of the last email (I highlighted the sections I see time and again) I received and this one is very mild compared to many I have received about the tragic suffering at the hands of downright malevolent doctors. It just reminded me, yet again, that the problem really lies in the hands of these physicians and psychiatrists who are supposed to be helping and serving people. —

Subject: Akathisia

I hope that I am not bothering you by corresponding too much.   Most of what you said in your first blog telling about your experience sounded so much like me. I want to come off everything but am scared because coming off clonazepam is I believe what started my akathesia.   My psychiatrist left last year and my new one whom I have never met decided to take me off my clonapin.  About a week after I had taken the last one I couldn’t sit still talking terribly fast.  I didn’t know what withdrawals were.  Had never heard of akathesia.   When I would talk to my counselor or nurse practitioner they would just say you’re going to be ok you’re medicine should be out of your system and this should end and started focusing on why I was anxious like it was just mental.  I have had issues with depression and anxiety but nothing like this.  I have been in the hospital 3 or4 times.  Not good experiences.  Finally happened to get my old dr  back.  He diagnosed me with akathesia. He put me on propanolol and ativan but he is 75 years old and stopped taking ins.  I can’t afford him and  feel kind of hopeless with the other psychiatrists I have dealt with.
This makes me so damn angry! I’ve seen this a million times, and I’ve LIVED IT. Psychiatrists and physicians need to know what a grave disservice they are doing by either unwittingly or intentionally staying ignorant to the prevalence of this type of drug reaction. The ones who are knowingly putting their head in the sand because the money is just too good should simply lose all capacity to “help” the public and should be thrown behind bars for a very long time. Or better yet, they should be used as pharmaceutical test subjects. Ahhh, if the world were only so just.
Anyway, here are some of the most common phrases I hear over and over again that doctors and psychiatrists are telling their patients:
“You’re just anxious/depressed, you need MORE/DIFFERENT meds.”
“There’s no way that drug is still in your system, you are SCHIZO/ANXIOUS/BI-POLAR/MANIC/ETC.”
“You need to be checked into a mental facility where they will medicate you more/better.”
“There’s no way that drug caused that reaction.”
“Oh, you don’t have Akathisia.”
“I’ve never seen anything like this.”
“I don’t know what Akathisia is.”

The bottom line is, we are not going to be able to stop Big Pharma, so as individuals we must call these physicians and mental care professionals to the mat and make them ACCOUNTABLE for this grave mistreatment, which is clearly becoming epidemic. Speak out for yourself, and others, and if a doctor needs to be reported, do so. We need to stop paying to be their victims.

My heart is with each and every one of you.


36 thoughts on “Are These Doctors REALLY Ignorant to These Drug Side Effects?

  1. Called Neurology and the person answering the phone to schedule had no idea what akathisia is or who to schedule me with. I cried. This is ridiculous . (You don’t have to post this. I just have no one who gets this and need to vent even if it’s text) I’m amazed at the way akathisia is hidden. I just read a chemical addiction book my daughter has for school and it talked about people self medicating, abusing and becoming addicted to benzodiazepines. It was right next to alcohol addiction. It explained the “strange” side effects of symptoms and listed them in a group which screamed akathisia but never used the word. I’m horrified by what they’re teaching.

    1. Agreed. It’s a scary situation. It’s because it’s a business for them and integrity just doesn’t factor in when dealing with these big corporations. I was just watching a show EXACTLY about this on Gaia TV yesterday. It was called Beyond Belief – Critical Health with Ben Fuchs. We have to be our own advocates and do all we can to help ourselves with wellness.

  2. Angie,
    I’m recovering from akathisia. It’s been several months and am in the waves and windows place. The insomnia is still a hurdle. I’m feeling good enough and have the calmer nerves to start educating my doctors about what severe akathisia really means. My psych med doctor and general practitioner seem shocked and oblivious at the physical and mental reactions I’ve had/have. I’m wondering if they aren’t taught anything at all about severe akathisia. My daughter is taking a medical terminology class and I notice her book is incredibly vague about the physical symptoms, leaves out all emotional aspects to akathisia, and all psychosis symptoms. So much so that it didn’t explain 95 percent of what happens to the body and mind.) What didn’t surprise me is it leaves out 100 percent of recovery from akathisia. I will definitely give her your web pages but wonder if there are other sites such as Akathisia Alliance etc that you or others may know of?

    1. It’s great to hear you’re having vast improvement! 😀 As far as educating folks, I’m not sure. When I went through this there was virtually NO info online or anywhere. I know there’s more resources now, you just have to be careful and understand what/who the source of your info is. As long as you find a site that pretty much explains what you have gone through I’d say it’s good enough to be shared. The doctors and pharmaceutical companies KNOW DAMN WELL about akathisia, they just won’t speak to it because there’s too much money to be had and it’s too dangerous to speak out against pharmaceuticals on any level. It’s a scary world we live in and the best we can do is stay educated and help each other.

  3. Thank you for your courage in talking about this horrible reaction to psychiatric drugs. I spent almost a decade on different a-typical antipsychotics and every one of them gave me akathisia. I knew I could not take medications in this category, but I was forced to. I finally told my psychiatrist when I was in my early 40’s that I would not take “it”. It was yet another sample pill, a new a-typical antipsychotics in the same family as the others, Geodone, Ambilify, etc. He fired me on the spot for non compliance. I could not go through it again. I was left with no doctor to treat my Bi-Polar I illness. I ended up in a mental institution after a suicide attempt from bi-polar depression. Fortunately, I met a good psychiatrist who knew his pharmaceuticals that he was prescribing me. Not all doctors are ill intended. I pray to everyone out there who is suffering the nightmare of akathisia that one day drug companies will no longer be able to hide their drug’s side effects under simple language like: “may cause…Restlessness (Akathisia)” Just barely slipping mentioning one of the worst allergic reactions to a medication a person can. I am so sorry for everyone out there now who is suffering. Please get another doctor if your doctor is forcing you to take a medication that makes you have this debilitating reaction that no one will treat.. I now take an anti-seizure medication for my bi-polar and have been well for over a decade and out of hospitals with no mania, depression or akathesia. Lamictal has no side effects and treats bi-polar. Please take care everyone and my heart goes out to those suffering right now.

  4. Angie,

    I was given IV compazine almost one month ago. I am dealing with severe inner restlessness and major depression thoughts and feeling like I need to scream. I am able to sit still but the inner torment is very hard. Please tell me this will stop.


    1. Ashley,

      I’m sorry you’re suffering with akathisia. It WILL go away. Have you started taking any of the advice given on this site?
      The sooner you begin helping your body/brain heal, the faster you will get through this.

      Please read all the posts and suggestions.

      Let us know how you’re doing.

      My thoughts are with you,

  5. Hi Angie,
    I thought I left an update comment but I didn’t see it here. But yea I just wanted to give you an update on my fight with akathisia. It’s been 11 days since this whole thing started and I feel more like myself. I am not 100% and still deal with my anxiety but I feel so much better! I still keep up with my healthy eating habits and drink lots of water but haven’t needed the children’s benadryl throughout the day. I really wanted to thank you Angie and everyone one on here giving so much support! Your words were truly encouraging and gave me strength to keep on pushing through it! Thank you!

  6. Hi Angie,
    I just wanted to give an update on my akathisia since today has been one of my best days yet. Its been 8 days since this whole ordeal with akathisia started and I feel almost normal. I would say I feel about 70% more like myself. I still suffer from anxiety but not so much the depression anymore. My akathisia has been more mental than physical after the first 4 days although when this whole thing first started it was equally both mentally and physically challenging for me. But I am doing better and I want others to know that it can and it will get better as long as you DON’T GIVE UP HOPE! I swear even when I do heal from this I want to make people more aware of akathisia! Akathisia is a real thing and the unfortunate people who have to suffer through it are the strongest people I know! There is nothing you can really compare it to for people to understand how mentally and physically worn out it makes you. Sorry for the rant but thank you Angie for your blog because it definitely gave me hope and made going through akathisia a whole lot more tolerable.

  7. Hi Angie,
    I am a 28 year old female suffering from medicine induced akathisia. I found your akathisia blog while doing research and wanted to share my story since your blog helped keep some of my sanity. I want to let others who are struggling with this know that they are not alone. I had gone to the ER to alleviate a serious migraine and nausea and was given torodal and compazine through the IV. I wasn’t made aware of the side effects of compazine and soon after being given this cocktail I felt extremely restless. Like I was going to die if I stayed in the hospital any longer. I looked at my gf and told her if they don’t take out my IV I am going to die or kill myself. I felt completely crazy and I didn’t know why I felt that way. When my gf returned with the nurse he then told me that compazine can have that kind of side effect on certain people. I was so scared to be given anything else I just wanted to leave. I was discharged about an hour later and went on the most uncomfortable unbearable car rides of my life. When I finally reached home I couldn’t sit still I had to keep walking even though I was extremely tired. But by the grace of god or angels somehow fell asleep after reading through some of the ask a stories. When I awoke the next morning it was horrible I felt really sick and restless I walked around in my small studio for a little over an hour straight feeling like I was losing my mind while my gf tried to calm me down. The anxiety of it all was completely unbearable and I just felt like dying. I made phone calls to the ER and my PCP trying to see if there was a way I could stop all of this from happening to me. The ER was of no help and made it seem like I was crazy. My PCP was the most understanding and told me to take 3-4 tsp of the children’s liquid benadryl (since that it was I had on hand) to alleviate the restlessness. The benadryl worked to bring the intensity of the restlessness down a bit to where I could tolerate it. But I do have days where it feels unbearable and I have been to the ER twice since I’ve been given the compazine and it has only been not even a week. I had a major anxiety attack and my blood pressure and heart rate were extremely high I thought I was going to have a stroke and that is when the doctor there said I had akathisia. I had an adverse reaction to the compazine. I felt so relieved because I now knew I wasn’t crazy. It is now a week since this whole ordeal started and I still suffer from anxiety and depression as well as the restlessness. But it has seemed to get better. I still take the benadryl for relief but I do have moments where I feel just a bit normal. I did change my diet like you did and take vitamin c the powder form in the morning. I am in no means trying to give medical advice because I am not a doctor but that is what is helping me right now. I hope others out there continue to fight through it and don’t give up hope. I gain strength and reassurance knowing that there are others going through the same thing as myself and fighting it and making it through this evil thing called akathisia. I am very lucky though to have a supportive gf and family because I know things would be harder without them. But everyone who is suffering from this remember you are not alone and don’t give up hope! Also for all of you helping someone going through akathisia you are a god sent angel because I can only imagine what I put my family and gf through when I tell them I would rather die than go through this any longer and there is nothing they can do to change those feelings. But stay strong because just you being there as support is helping more than you can imagine.

    1. Keiks,

      What a wonderfully informative post. Thank you for sharing your story! I’m so glad you got the Benadryl pretty much right away and I have read that if you have ANY reaction to medications, especially IV administered that taking massive amounts of Vit C can totally detox your body/brain. The detox might be a bit rough, but ultimately you can avoid the months or years of further suffering others of us have gone through. So GOOD FOR YOU that you believed enough in the alternative stuff to try it!!! 😀 I think you have saved yourself a much worse story. I’m very pleased if this blog has been a part of that. I get great satisfaction helping others avoid the path I went down.

      Keep us up to date with your progress and anything else you find (either here or stuff you learn elsewhere) helps further you along that quick path of healing! Sadly, there will be many more after us who will walk this path and all the info we can give to help will potentially help them avoid a long recovery as well.

      All my best,

  8. Hello Angie
    Sorry I’m not sure if very posted in the right section here but I just wanted to update you after my protracted withdrawal and also my adrenalin injection with the lip filler.
    The pacing and constant suicidal urges have stopped after 3 weeks and now I’m just left feeling chronically fatigued with a constant low level anxiety loud tinnitus cloudy vision and depersonalisation but I know all of this will also let up because it did before.
    Thanku again for ur amazing blog and my heart goes out to everyone on here.

    1. Karen,

      Thank you so much for the update – I’m THRILLED to hear you’re progressing quickly along toward healing 😀 I know you still have
      some crud to get through, but it sounds like the worst is behind you!

      Please do update for everyone once all the residual symptoms have gone away. I know I’m not the only one excited to hear the news.

      All my best,

  9. I was put on sulfasalazine for a rash and was going blind with kidney failure. The doctor had the balls to say I was the first patient to have this problem. He wanted to put me on chemo for a skin rash.

    1. Darla,

      I’m so sorry to hear what you went through. I hope you are all healed now?
      I know someone who also had kidney failure from an antibiotic, she ended up in the hospital
      and for MONTHS we didn’t know if she would make it. She did, only to encounter a slew of
      other issues after that.

      Thank you for sharing your story. It’s so important the information
      gets out there. Everyone needs to be informed so they can make an INFORMED DECISION on their
      own health care and people like you are the ones who help others gain that much needed knowledge.

      All my best,

  10. I have an update on our page about this…..Its been over a year and my husband suffers everyday from Severe Akathisia. I am so thankful he is still alive because he is in constant torture every single day. He has been off all meds for 4 months now and doctors still say its in his head and he needs more meds. Only one we finally found said to stay away from meds.
    He did a spoken word poem about it
    and we started a group on Facebook “living with Akathisia”
    Its so sad those dont listen to their patients and these drugs are doing this to people!

    1. Aimee,
      Thanks for your blog. I hope your husband is having a good day. It has been since July, 2014 since I got akathesia. I will feel so much better sometimes and think that I have overcome it but today I am
      having the worst day I have had in a while. Mostly depression. Not so much the restlessness any more. I am still on some meds . I don’t do Facebook but I desperately need to stay in contact with others out there who are going through this. Am going t watch the poem and hopefully will get on Facebook soon.


  11. Angie…thank you. Thank you for being there, for staying on top of this, for understanding & being the ONLY person who gave me hope, a life preserver, education, validation when I was truly at my wit’s end… you saved my life literally. Thank you for remaining passionate & vigilant fighting for all our lives in one form or another. Truly, had I not stumbled across your blog (I don’t even remember how…) I would not be alive. I just cannot thank you enough. You are an earth angel most definitely, saving many of our lives and sanity, helping us gain back what we can, easing the hell, the dark hallways and truly appreciating the recoveries. The warmest, longest, most heart felt cyber ((HUG)).
    Still crawling back, but seeing light at the end of a very long, dark scary tunnel.
    Deepest gratitude.

    1. What a beautiful note. You’re more than welcome. I’m just so glad I can help others where help was lacking when I was going through it. Please keep me/us posted with your progress. Warm hugs and gratitude right back to you.

  12. My husband after 11 months of being drugged and told it was in his head finally saw a Neurologist who confirmed he has severe akathisia. We would love to help spread awareness on this as even ER doctors told him it was all in his head and he needed to calm down! They are ruining peoples lives!

    1. Aimee: Can I ask did your husband see a specific kind of Neurologist? We really don’t have any decent ones around Youngstown, Ohio. I think I saw one some where along the line of this journey but, really can’t remember…evidently he didn’t do or say anything of significance,,,or could just be my mind! lol DId he offer any suggestions? Yes, those who don’t know should just say so, it would be less damaging than what they do say.
      On a good note – don’t know how many this will reach as I have such a difficult time following & figuring out how these kind of blogs/pages work (even before the mind melt down, I wasn’t particularly computer savvy) – BUT, I’ve had a “window”!!
      Going on 3 yrs (2?) …and 2 bouts from separate antidepressants, I’ve had a 2 week+ long window!
      I’m still numb but, I can for the most part get myself a meal or 2 a day w/o having to force myself; I get through the day mostly sitting in my chair, but, online, interacting on FB, even went back to playing Words w/ Friends & am doing just as good as ever (words in any form have always been my delight), watching some TV to distract & for “company”, even enjoy a few shows; I’m laughing again! …get outside for “porch tea” most days (any weather!), and even converse w/ my Alzheimer’s other tenant in a seemingly “normal” conversation – though she’s pretty much deaf, smiles & nods her head when I know she heard nothing of me pouring my heart out – it’s great practice! or when she’s not accusing me of hiring the people driving up & down the street to stalk her – :\ ?! and can do it all w/ very little,or “normal” anxiety.
      I don’t have to force myself to get through the day – the severe anxiety, fear, depression, suicides compulsion has lifted (it’s right behind me & every so often tried to crawl up my back, over my shoulder and get into my head again but a little self talk or chanting usually banishes it back to it’s proper place.
      I know better than to “get hopeful”…I just enjoy and stay in the moment.
      It’s a relief not to have to hold so much that’s so overwhelming, at bay all the time. Worst case – it’s been a nice “sane”cation from all that 24/7 extreme hard work. 🙂
      I did go back on 1 mg Klonopin… had to; sleep was getting to be just too much work, too exhausting trying to do. I feel at least I can get a bit stronger, physically & emotionally before I can try to handle weaning off again trying the “milk method” I’ve read about somewhere on here. It was extreme crisis stage, I had to go back on.
      Doing this totally alone – no helpful drs, no family, no friends…just do what works even though I know it’s said to be harder to get off the Klonopin if one gives in & goes back to taking it… like I said, winging it, living in the moment, doing the best I can & whistling through these dark hallways. :\
      Wishing every one of you blessings, peace, knowledge, one stand by you person to see you through & lots & lots of love, positive thoughts, hope & health.
      Thanks for being here, thanks for sharing, thanks for the love connection – it all truly is a big fat life preserver in an angry, storm churning ocean. 😀 <— see, a smile! ❤

    2. Linda, Actually its a long story but I am SO sorry you are going through this!!!
      I had to LIE to get a referral to a neurologist,
      Just went down google and picked.
      He said no more meds (because he had been on 14+ in just 10 months!) and sent us to Barrows to see a movement Disorder Specialist who said he was the worst she had ever seen BUT he couldn’t have akathisia because of the onset drug she didn’t believe it! STUPID!!!! They all protect their dumb drugs and are killing people.
      The neurologist ordered an MRI and auto immune tests, everything came back perfect.
      I posted a video here with an explanation 🙂

    3. Aimee
      Sorry I couldn’t find the reply button after the poem so posted here and pls excuse my language but WHAT A FUCKIN AMAZIN POEM AND WELL SAID FROM JOSH!
      The videos to go with it are mind blowing aswell- just exactly what the medical profession needs to see and wake up to!
      If you haven’t already I think u should contact Dr Peter Breggin.
      I know it’s extremely hard to take on big pharmacy but I think he would be happy to help you try.
      My heart goes out to you, Josh and your children.

  13. Angie and others: I feel so deeply for all of you suffering and was so traumatized by my akathisia experience that this post reduced me to tears. Angie was a great help to me during my six months of hell, I consider myself incredibly lucky to have come out the other side of my adverse reaction and that the only permanent damage that seems to have been done is complete genital anesthesia touch wood and even that is bad enough but sometimes i feel like it was so traumatic that i could do with therapy for the akathisia alone! I am terrified of encountering it again and having no support from the medical “professionals”.

    I WANT TO HELP. I have already written 75 thousand words of a novel i hope to publish about my life living with mental illness and dedicated a whole chapter to akathisia but sometimes i feel it deserves its own damn book. I have some web design skills and I am wondering if a forum of some sort dedicated to akathisia might help in any way. I feel that part of the problem is that many people who get akathisia are psychiatric patients, as am I, and trying to get your voice heard in the face of abuse and neglect is almost impossible because people would rather believe you are deluded or paranoid. It is such an insult to be told you are unable to distinguish between regular anxiety (and we all know how horrific that can be too) and a severe adverse reaction to a pharmaceutical drug! It is the worst feeling in the world when the facial expressions of even your most loved ones turns cold as they tell you they have had enough of your “complaining as if you believe that you are going through something so much worse than anybody else could ever imagine as if you are special in some way”. What hope do we have of getting people who have never experienced it to understand or care?

    My partner has just been put on Arirpriprizole (Abilify) which by the way is nicknamed the king of akathisia and surprise surprise his psych said nothing about akathisia or even movement disorders in general for that matter. I am genuinely scared for his life as I am convinced that the sole mechanism/ relationship between psych meds and suicide IS AKATHISIA. Akathisia made me realise that I had never before been truly suicidal. I tried to warn him but he didn’t listen and I see his legs starting to twitch uncontrollably.

    I have since joined dozens of support groups online for people on psychiatric medication but have been met with a barrage of people whose judgement seems to have been too heavily clouded to take proactive action by the belief that all doctors are evil and planning for us to die from adverse reactions, i guess this is why the stereotype that psychiatric patients are not to be taken seriously comes from but this shouldn’t take away from the fact that there are still so many of them suffering. I believe that most of the problem is to do with ignorance, not malice and It makes me want to take up a career in neuroscience myself, though that would not be possible.


    1. Thank you for sharing! Yes, if there’s some way we could link to a properly organized forum I think that would be immensely helpful!
      Let me know how we could make this happen..


    2. This reply is for Victiniworth.
      I read a little of your story on another forum. It is true that NOTHING compares to akathisia. I am losing hope as mine has been going on for longer than a year. It seemed to go a little on lithium (only took for 6 weeks as didn’t suit me) and then was less severe for a few months but it has been back for a few months now.
      I too am scared of drugs but what do you do when you are willing to hurt yourself to rid yourself of the pain.
      I nearly threw a mug of boiling hot tea over me today so that I could concentrate on that instead.
      I had no mental illness before akathisia. I am now in a dreadful state.
      Does yours come back Victinworth? Have you taken any drugs since?
      What do you think you will try?
      Don’t take fish oil

  14. I am so so scared and after trading this is only further confirms that what started with a ssri two years ago was in fact akatheive been living in hell. My brain is burnjng with acid and my body too…it feels like I have been dipped in acid. I pace and pace. I feel completely toxic. I have a ling story. One ssri after another. Drs told me it wasn’t the drugs. My heart rate was 200 while standing …soaked bed sheets with sweat. Derealization..terror..panic..brain melting flashes…tongue ice cold ..moth burnjng on fire. Night terrors. Lost 70 pounds…hissing in my brain. Put me on a beta blocker…high doses of ativan and xanax. I Co tinted to get worse..much much worse. I was a RN…normal person …was hospitalized 3 times for my heart and 8 times to a psych unit. Was diagnosed bipolar nos with rapid cycling mixed episodes..multipersonality ..ptsd..panic disorder..major depression ect. I was so desperate for help I made a plan to take my own life. I was ct off of everything last oct and I officially entered the gates of hell..I have been there ever since. I cant work. .trying to care for my tiny baby is a struggle..noises are so loud and fear provoking..adrenal surges..scared to even put dishes in the dishwasher…depression so deep..chemical hell. I’m in fear for my life.

    1. Poor Angela.
      I feel your pain.
      What a sad sad life we have when all we want is the peace to sit still and just be. We do not want money or fame or even perfect health….just an escape from this hell.
      I so get the scared to put dishes in dishwasher. Everything is scary. I have to have curtains closed as the fear of weather scared me.
      You are a year off drugs. Have you seen no improvements? Any windows of relief in the evening?
      I don’t know how we carry on, I really don’t.
      Just to say that we do understand.
      Hugs x

    2. Angela,
      Can you contact me directly?
      I would like to talk in more detail about your experiences.
      Not sure how we would do this.
      I have been suffering for over a year but I got better (moderately) for a few months only to get significantly worse again. I would like to hear about your improvements (if there are any).

  15. It makes me so upset and angry to think of people all around the world going through the agony of akathisia. Think about all those old people who are battling it without any understanding, or perhaps even the ability to communicate their pain. So many old people are drugged these days. And children tooI imagine. Who will listen to them?

    One of the most distressing things during my worst months with akathisia was trying to explain to people how different akathisia was from normal anxiety/agoraphobia/depression etc. I don’t think anyone believed me, even my family probably thought I was simply suffering from major anxiety and depression. My family are liberal, open minded people and I still had to explain (shout/cry/scream) that what I was enduring was different; way beyond anything humanly imaginable. Im not even sure that they believe me now. They say they do deep down Im not so sure.

    I was diagnosed with bipolar at my worst and I know that I would have readily accepted that condition over akathisia. The trouble is that I am not actually bipolar but I have yet to find the strength to battle the system. A system that should be fully aware of the difference between an iatrogenic condition and a mental illness. The trouble is they are similar in many respects except that one responds well to medication usually and one was caused by it.

    I’m not sure how we can fight this. We are going through the most agonising, disorientating, painful experience of our lives and we are more or less ridiculed.

    There is not one friend I have really talked about akathisia with. Consequently I do not talk to any of my friends which further accentuates in their mind that I am mental ill most probably. Akathisia robbed me of more than you can imagine and it is not a recognised condition.

    I think akathisia exhibits such acute pain and raw suffering that no one would ever guess that the drugs used to heal people could ever cause such a problem. Psychiatrists are starting to acknowledge withdrawal (especially in benzos) but most still dispute this.
    Akathisia is on a whole new level. I’ve withdrawn from many drugs and normal withdrawal is a doodle compared to akathisia.

    When I try to explain to doctors and psychiatrists that my problems have always been when I have been coming on and off drugs they look at me like I am bonkers. And because I am having such a marked reaction to fish/walnut oil (over a year ago no less) I have absolutely no hope in persuading them otherwise.

    I feel so wronged. So helpless and so frustrated that I have to suffer in silence.I imagine a lot of you do too.

    My friend told me that one day the truth always prevails but I suppose all we can do is try to educate the psychiatrists and doctors that are willing to listen to us and not judge us.

    Trouble is I think even the kindest doctors may listen and nod and then roll their eyes when we have left the room.

    It’s all so sad, so desperately sad.

  16. Hi Angie

    Thank you for posting this. I wonder if a load of us could all write our stories and collectively send them somewhere, to someone influential. If enough of us did this, maybe we could get somewhere. I’m not sure where to start. Problem is, we are all too sick to do anything about it. But something MUST be done about it. Lives are being ripped apart. Akathisia is one of the worst experiences imaginable and I’m pretty sure I’m not the only one who would willingly have my legs chopped off to get away from it. I’d rather have a major crime committed against me than this. But then, this IS a crime. One of the worst crimes anyone could commit. If I recover from this, I want to get the message out there somehow.

    Thank you Angie for the amazing thing you are doing.

    1. I dont care how ill i am i will do anything to promote awareness I will gladly write my story if i could just find out who to show it to so that it would make a difference. I prefer to think of akathisia as essentially a form of brain damage, temporary or not. I think you are right the pain is so acute and raw that I believe that a drug specifically for inducing akathisia would be even more effective than capital punishment, though i wouldnt even administer it to criminals.

  17. After using Klonopinforover10 yrs., researching & seeing the horriffic end results I tried to get get off the Klonopin. I usually took .25 mg., .50 mg when I couldn’t sleep, 1 or 2mg on occasion when sleep was bad & anxiety high. “It’s safe for long term use” I was told over & over by many that I trusted the opinion. It did help me sleep & w/ the anxiety w/ no side effects.

    I weaned down for 4 months to the smallest possible tiny pc of the tablet.

    Not sure when this fresh new hell started – during the weaning, I believe, once I was off, sleep was pure hell. I started fearing going to bed! 3 hours at a stretch was the most I got for 3 months. I’d drift off, wake & find I’d only slept 5 mins!! What sleep I did get was very poor. Used all my natural supplements, teas, self talk – lots of self talk, rocking, patting myself reassuredly, praying, spiritual rituals. Then the obsessive thoughts started, then the weird out of nowhere thoughts, images…I did lose my mind, just nobody told me!

    I can’t trust any medical people after the horrific bouts w/ the anti-depressant side affects & withdrawal.

    I knew I was in big trouble. I have no one – only 1 phone friend in my life – don’t blame them all for bailing – this is insanity!

    My heart started beating so hard it would wake me up, fluttering, skipping beats most of the day & night after I needed steroids for the COPD. I talked jittery, shaky, non-stop to anyone who crossed my path – mailman, store clerks, gas station attendant, anyone I would pass. I felt as long as I didn’t stop talking I wouldn’t die…from whatever my body/mind was doing, fear, loneliness. I had to finally give in, take the damn Klonopin – I was going to physically die or go psycho & do some crazy thing – I’d rather die than go back to that psyche ward that started all this craziness w/ their drugs.I have1 daughter, 1 Grand, haven’t seen them in 2 yrs since the suicide attempt…don’t blame them, but it hurts as bad as the Klonopin Krazies. SO I’m back on, sleeping & only waking 4-5 times, usually go right back to sleep – not the working every minute of the night trying to get at least an okay hours worth of sleep, feeling like crap – hung over during the day…and I just sit, just exist…there’s no one to listen, I rarely get out even if I need food, I can’t think clear enough to even try to imagine who could help…and just pray. This life sucks.

  18. Please excuse all the spacing issues.. I tried and tried to fix it but the program won’t seem to work properly.

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