SSRI Withdrawal’s Elephant in the Room: Tardive Akathisia

Stuart Shipko
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It has been 8 years since I wrote my first blog for MIA, called “Playing the Odds.” I wrote then that if I thought that I could successfully take people off of SSRI antidepressants, that I would have capitalized on it and opened a string of withdrawal clinics. My seeming pessimism was commented upon by MIA readers, and I took the criticism to heart, and renewed my efforts.

People who are on medications often need to change psychiatrists because of change of insurance, relocation, or provider loss. Each time I saw a new person who was asymptomatic on a maintenance dose of a SSRI or SNRI I offered them the option of stopping their medication. Almost everyone who felt well wanted to stop their antidepressant.

I found that people who had a difficult time tapering early on were unlikely to be able to eventually completely stop. If an initial 5% dosage cut results in a lot of withdrawal symptoms, then it wasn’t worth it to struggle because, more often than not, withdrawal would become intolerably uncomfortable before stopping completely. In these people it is best to settle for harm reduction by just lowering the dose within a range of what is comfortable.

When considering how to cut the dose down and various tapering strategies, there is no one right way. The best SSRI tapering information is found on the Surviving Antidepressants web site. This has been a reference source for me.

There is a lot that is unexplained about the tapering experience. It isn’t consistent. One person who had been on a SSRI for three years failed a slow tapering due to intolerable withdrawal symptoms. An actor, a year later he went into production where he was busy 17 hours a day. He had forgotten to take his medication with him and didn’t realize he had done so until two weeks later! He was completely asymptomatic, and still asymptomatic six months later. I have also found that people who are unable to stop with a tapering protocol the first time were sometimes able to stop at a later date using the same protocol. It is hard to reconcile this with theoretical, receptor-based explanations of withdrawal.

The speed of tapering does not seem to be related to long term outcome. Slower tapering is generally more comfortable on the way down than faster tapering and facilitates stopping completely with a minimum of discomfort. However, success or failure after stopping completely mostly relates to whether tardive akathisia occurs.

Around three to six months after the last dose of antidepressant, akathisia emerges suddenly, often as an overreaction to something seemingly minor. It is an intensely anxious, agitated, and gloomy state, so uncomfortable that it is often disabling. People take comfort in considering the possibility of suicide if they don’t get better. Because of this possibility, tapering should not be undertaken lightly.

The duration of total use of all current and past SSRIs is related to long term outcome. In my clinical practice tardive akathisia seems to be fairly common in people who taper to cessation after 10 years or more of cumulative use.

Once tardive akathisia develops, there are basically three options: wait it out, reinstate the antidepressant, or use benzodiazepines for symptom reduction. Although reinstatement sometimes makes withdrawal akathisia worse, this is very infrequent. With reinstatement most people return to their baseline. I always reinstate the same drug that was withdrawn. Sometimes reinstatement results in rapid return to baseline and sometimes the return to baseline can take several months. On more than one occasion reinstatement required a higher dose than the person was taking before. Waiting out severe symptoms is inadvisable as it can take months or years to get back to baseline, and the discomfort can be extreme. Benzodiazepines can give a high level of symptomatic relief and can be used intermittently to avoid dependency, or, in more serious situations, they can be taken regularly.

People generally find that symptoms are also helped by regular exercise, good diet, and some sort of spiritual belief system. Recovery is not linear, and while the trend may be towards improvement, setbacks are expected. During a setback people often worry that they have lost all of their gains and will never get better. This is not the case.

It is particularly troubling that antidepressant withdrawal related tardive akathisia is still not recognized by medicine. People know that the tardive akathisia experience is not relapse, and is not like anything they have ever experienced. Most psychiatrists end up labeling the tardive akathisia as a form of bipolar disorder or agitated depression and want to throw a bunch of new meds at it. However, I have also found that there are thoughtful providers who welcome additional information on this subject and will work with an informed person’s information.

Not only do people suffer from the akathisia, but they also suffer because they are misunderstood by the medical profession. After the doctor diagnoses a new disorder and prescribes medications, the family will see reluctance to take any new medications as sabotaging treatment and will strongly encourage more medications. This puts the person at odds with their family as well. The experience, in addition to being intensely uncomfortable, can also end up being one of marked emotional isolation. Even if a physician is unable to help a problem medically, kindness and understanding and having someone to act as an educated guide through tardive akathisia is important.

There is no way to predict who is going to develop tardive akathisia. It does not result, as most people think, from tapering too fast. It happens even with very slow tapering. I do not think that anyone who has not already experienced akathisia can realistically be prepared for this possibility through informed consent; it is simply too uncomfortable to be fully imagined in advance. In a conversation with a surgeon, we discussed that if there was an operation, performed on asymptomatic people, that would be health promoting but resulted in severe and possibly long-lasting discomfort in an unknown percentage of patients, it would not be ethical to perform such a procedure. There is an analogy here to medical supervision of SSRI tapering.

The most common question I am asked by people with tardive akathisia is whether they are going to get better. In my personal experience, everyone has gotten better over time. The duration is unpredictable, and it can take weeks, months, or even years to recover without reinstatement.

It is gratifying to see that the issue of stopping psychiatric medications has been given increasing attention in professional circles. To date, I have not seen studies on withdrawal look at the person’s condition over the year after stopping antidepressants. Moving forward, studies on how to best taper and stop antidepressants need to also follow up on patients for at least a year after the last dosage to get a full picture.

So, still no string of lucrative SSRI withdrawal clinics for me. I no longer think that the barrier to this is my pessimism so much as the reality that the long-term consequences of SSRI tapering are unpredictable and can be severe. While tapering can be uneventful, no doctor can guarantee a safe and successful withdrawal at this time.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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82 COMMENTS

  1. “While tapering can be uneventful, no doctor can guarantee a safe and successful withdrawal at this time.” Which is good reason the doctors should stop prescribing the SSRIs and SNRIs in the first place.

    But I am glad the importance of withdrawing people from the psychiatric neurotoxins “has been given increasing attention in professional circles,” too. But, of course, this should have been considered, prior to mass ‘medicating’ the population with these drugs.

    As one who has had brain zaps, a now known common adverse symptom of antidepressant discontinuation syndrome, for 20 years. I will say the withdrawal symptoms of the antidepressants may be permanent. And certainly, new withdrawal symptoms can occur more than a year after being taken off the drugs.

    But you are right, such symptoms are way too frequently misdiagnosed as bipolar. It’s a shame the psychiatrists, and other doctors, are still so ignorant of the common adverse effects of the drugs they prescribe.

    • it amazes me a little that this kind of comment is really only found on this site. Why isn’t this intuitively understood by the public? Rhetorical question…

      But I agree with you completely on all of this. And I’m sorry about your continuing withdrawal effects <3

  2. I have data strongly suggesting that manganese salts are therapeutic for “antipsychotic” induced dyskinesia. Would they also be useful for “antidepressant” induced dyskinesia as well? Has anyone studied the relationships between trace mineral levels and antidepressant use?

    • “…“While tapering can be uneventful, no doctor can guarantee a safe and successful withdrawal at this time.” Which is good reason the doctors should stop prescribing the SSRIs and SNRIs in the first place…”

      Exactly! There’s no point on going on drugs that cause more serious “problems”, than a person has.

    • Im a lay-expert on my own akathisia experience, while on Prozac and while withdrawing from Lamotrigine (anticonvulsant). SALT wound up playing an unusually strong role in when the “waves” of the worst of it subsided. Now (2 years off everything) if I get an episode of akathisia, half a TBSP of salt, waiting a minute, and 20 oz of water will mostly cure it. I mention this bizarre thing to say, I would be very interested in trace mineral levels and akathisia if they had a relationship!!!

      • Interesting. Would it be the sodium in the salt? The iodine(?) if your salt was iodized.

        Back in the 1980’s, I read a piece by a Richard Kunin MD, who successfully treated “antipsychotic” induced tardive dyskinesia with manganese salts, and in some cases, relatively high doses of niacin.

        • I think that developed society has taken us so far from our instincts, that hydration doesn’t come naturally to us anymore. And I think hydration must play a role, because dehydration will aggravate a lot of things. That’s my suspicion about akathisia. Yes of course, we need water! But it is not the whole equation, because sodium is a major player, and yes electrolytes, but also insulin, glucose, it’s complex. I think we are, generally, all in a poor nutritional status, but conditioned to believe we must not be (rich countries and their cultures, you know). I wouldn’t be surprised if B6 or B12 or sea salt or manganese salts or iron did it in any particular case. I don’t think akathisia is unsolvable – every lead is worth investigating, that would be the scientific spirit. Sadly it’s just “anecdotal evidence” we’re going on about now! But it’s wise to get creative and try solutions out like that. Manganese, duly noted 😉

    • Dr Abram Hoffer used both moderate (still small) doses of manganese and high vitamin b3 to prevent and treat TD. Not sure about akathesia, I hope I’m not confusing the two. He thought if the drugs had a small amount of manganese combined in them, the TD would not occur. Actually recommended to a drug company, but of course nothing happened. I can see that as being a complicated thing even if it was legitimate. Hard to get data, but he was convincing.

  3. ‘ It does not result, as most people think, from tapering too fast. It happens even with very slow tapering.’

    But how slow can you taper when you have to go from venlafaxine 37,5 mg to 0 mg in one step?
    The use of taperingstrips makes it possible to reduce in 1, 2 ,3 or more months. Considering the increasing impact of reducing dosages on the receptors with the smallest last steps, we hope (and see in our patients)for a preventive effect on the risk of developing tardive dyskenisia.

  4. I used golden paste (turmeric paste) pretty religiously during my withdrawal. The SSRI was the first and easiest. Lamictal withdrawal was hell and last. I developed gabapentin withdrawal syndrome multiple times, which is better studied than SSRI withdrawal. I’m coming up on four years off pharmaceuticals entirely. It’s liberating but I always feel the wolf at my heels and the threat of being medicated again with my physical health issues. I can’t ever go back to how I felt on the drugs. We’ve got to get rid of the concept of forced drugging. It’s a constant existential threat in the back of my mind.

    • “I’m coming up on four years off pharmaceuticals entirely.” Kudos, kindredspirit.

      “We’ve got to get rid of the concept of forced drugging.” I couldn’t agree more. But instead, now Bill Gates wants to force vaccinate the entire world. And he’s not even a college graduate, let alone a doctor.

      But that is, of course, more reason to end the right to force drug anyone, for any reason.

    • Oh wow, me too on the SSRI/Lamotrigine. For what it’s worth, I don’t the lamotrigine withdrawal gets the credit it deserves for being such excruciating hell. It’s really a horrifying one, i know we haven’t met, but i feel a lot of pride in you and respect for the fact that you’re 4 years off, and had to do both withdrawals. Wow. And yes, the wolf at your heels, what a good metaphor. A constant existential threat, indeed, and though you’re not alone, there’s no “official” way for us to testify for each other out of this crowd of “mental illness” which disqualifies us in many regards. If you’ve beaten back both drugs, you may just beat back a whole pack of wolves. I agree with your whole sentiment here

  5. So it’s damned if you do and damned if you don’t depending on the person. I wish that this information was given to people before they accept the drugs. A lot of people are being sold on a false hope.

    I’ve been trying to figure out whether or not it’d be even worth trying to come off my drugs. I’m functioning relatively well right now, but I’ve never experienced being “drug free.” I was six when I was put on my first round of psych drugs and it’s been consistent since then. No neuroleptics, thankfully. Just an SSRI, a TCA, and a Benzo.

    • “I wish that this information was given to people before they accept the drugs.”

      Where I live you don’t even get the right to accept the drugs, they get ‘administered ‘ without your knowledge when it is known you would not take them willingly. This would of course be a crime if the people who had a duty to ensure that the law was applied could find their copy of the Criminal Code, and did not use the mental health system as a means to deny anyone who is the victim of public sector misconduct the right to justice.

      They simply slander away and don’t even need to apply the laws they pass. An Attorney General who will not answer a question of law (who deals with allegations of State sanctioned torture other than the people who are doing the torturing?), and instead refers matters to the Minister for Health for “actioning”? Personally I can see a problem with that but ……., strange these people don’t.

      And who knew that these drugs could be prescribed AFTER they have been administered without knowledge, by a doctor you never even met? Another bonus to being able to make a person a “patient” after the fact (in fact you don’t even need to do that, simply have them ‘flagged’ on the police system falsely). What types of situations might there be a need to ‘spike’ people with date rape drugs and then have a doctor write a prescription for the persons “regular medications” which they have never taken in their life, 12 hours after they were administered? That would constitute a serious criminal offence of attempting to pervert the course of justice, compound or conceal evidence of a criminal offence, but ……. no Criminal Code, these people can literally kill and nothing will be done. Ask me how.

      Public Sector Management Act means you can’t sit on the crimes forever. Or can they? When a hospital Clinical Director can call criminal fraud “editing” of documents, and provide that fraud to lawyers, anything is possible. Particularly when those with a duty to act utter with the fraud.

  6. I will never forget the psychiatric drugs toxic effects including Akathisia. The Akathisia during withdrawal became excruciating with me pacing for hours in my house and neighborhood. I knew if I didn’t do this I would start screaming.

    One of the psychiatric drugs was a powder capsule which I tried to taper from but kept getting inaccurate doses. A compounding pharmacist showed me how to use a suspension agent and calibrated cylinders to slowly reduce the drug. It took me several years to taper off the psychiatric drugs and even longer for me to be able to sleep decently. I could see how the w/d insomnia would make anybody go back to reinstating.

    • aria, the experience you describe – pacing for hours just to not scream – I can relate completely. I remember being in IOP level DBT, where I was allowed to make “coaching calls” for help “using your skills” – which included “crisis survival skills” like intense exercise and sticking my face in a bowl of ice water. I was having crises almost daily; this was all put down to “borderline symptoms”. During the 5 years I was in and out of that program, I was prescribed so many different drugs – antidepressants, antipsychotics, mood stabilizers, amphetamines – by so many different prescribers, it was ridiculous. No one ever said that maybe the drugs were at fault and I only learned about akathisia within the last year. When I first learned about it, the feelings of betrayal were immense.
      I remember feeling like such a burden and a failure making those calls every day. I was always getting messages that I needed to learn to use my skills more on my own. I remember one time when I didn’t call and instead went into my storage area and smashed all my Christmas ornaments into shards.
      I admire your resourcefulness and perseverance in tapering off the drugs. They sure don’t make it easy.

  7. Thank you Survigingantidepressant.org for adding the warning not to go from 37,5 mg venlafaxine to 0 mg in one step.
    And don’t do it by ‘counting grains’ ! Each grain does not contain the same amount of medicine!
    Tablets used in taperingstrips go to 0,5 mg.

  8. Respectfully, “uncomfortable” is not the right word. It is actually so inaccurate as to be insulting; working with people who have experienced akathisia to any extent, I would imagine you would understand this already. I suggest you change this phrasing, because it is an embarrassing black stain on an otherwise necessary piece of writing. Please reconsider that language, it is so jarring

  9. “Respectfully, “uncomfortable” is not the right word. It is actually so inaccurate as to be insulting; working with people who have experienced akathisia to any extent, I would imagine you would understand this already. I suggest you change this phrasing, because it is an embarrassing black stain on an otherwise necessary piece of writing. Please reconsider that language, it is so jarring”

    For those new to this who read the word akathisia but have no real life understanding, listen to someone who describes his akathisia –

    https://www.youtube.com/watch?v=HLWgVpmo1e0&feature=youtu.be&t=1020

    “We’ve got to get rid of the concept of forced drugging. It’s a constant existential threat in the back of my mind.”

    And so say all of us.

    • Agree. To refer to it as “uncomfortable” would lead many to think it’s kind of like having a stuffed up nose.
      And I think “forced drugging” makes a lot of people ignore that very real problem of being forced by withdrawal side effects, or even being made to feel guilty if not “medicating”.
      I’d say they perfected the drugs by the drugs doing what they were meant to.

      • I think a whole article could be written just on the factors that coerce a person into taking these drugs, the “forced” drugging that appears to be freely chosen (like me putting those damn pills in my mouth and swallowing them, every day, from 11 years old, Jesus help me). In fact I think it should be written. Thank you for pointing it out!!!!! Another elephant in the room, that is. Don’t look now but it’s looking more like the African savannah every day with all these glaring, tragic issues with psychiatry at large.

        • That sense of “forced drugging” may be the rule, but truly forced drugging does happen. When a doctor of any sort poses as an expert in ‘Tapering” a psychoactive drug and all goes dangerously badly, that doc may decide to cover his/her tracks by committing that patient to a real mental hospital where the patient is drugged into oblivion. That patient has close to no chance of seeing daylight again.
          Specific case: a woman was placed on benzodiazepines. She became dependent. The consulted doc called for discontinuing by 10.0mg Valium per month. The consequent harm became a crisis. The doc had her committed to a sate hospital where the woman was massively drugged, it seems, to keep her quiet. Today this woman is brain-damaged and incapacitated. She requires total care.
          Withdrawal syndrome from Benzodiazepines to civil commitment to forever crippled, it happens. It happens under the guise of giving her the “help that she needs”.
          She didn’t willingly take that long list of concurrently administered drugs while in custody.
          Law, in practice, assumes that the psychiatrist’s desires overcome patient rights because the psychiatrist, clearly, is a being superior to his mark.

          • I wouldn’t even consider the “coerced” drugging to be the rule myself, but i get what you mean. As callous as it might sound, i think it would be fair to make truly forced drugging a priority in terms of the focus of any anti-psychiatric abuse activism (and MIA is aggressive about that, and that’s really great). Basically I know what you mean and I agree that the real use of force, where there is really no escape, is bizarrely common and over alleged “relapse” and side effects, and withdrawal symptoms. How morbid… and yet it’s true, and it happens. They go hand in hand in a sense; when the system chooses you, good luck getting out

  11. Thanks for the Post Stuart and being advanced enough in your thought and practice, and conscious enough to deal with and work in an extremely draconian and difficult field. Although I refrain from using words such as “disorder”, I still appreciate you for actually being there for the people.

  12. I experienced akathisia for years during Paxil withdrawl. I had about 4 years without it then after being prescribed antibiotics it reared it’s ugly head again and lasted for 4 months that was 2017 .I have it again now since May 2020 it has not disappeared yet. I have been off Paxil 15 years !

      • careful re “levofloxacin”. Some nasty long lasting stuff, and who knows if some of the stuff one suffers is permanent. Because often we don’t tie in future body problems to a drug that you might have taken years back. Insidious damages.
        And of course, no one is a true scientist, including scientists. Science that does not know, does not create crap that harms and calls them “side effects”. Everything, including BAD effects are THE effects of the drug. But then they don;t want to call them “bad effects”.
        It’s all rather convenient for them, because we cannot “prove” it was due to the drug, even if we know it to be true, and as “scientists”, they can say anything they like. It’s all in the title or licence.

        • Thanks sam. I think that one is a fluoroquinolone (sp?) if so I’ve heard they can do serious long term damage. I believe there’s a whole group of people organized against their use much like we have withdrawal forums for various drug classes, I remember seeing a doc a while back about ABs where people had been harmed.

          Good point too re the negative effects too it always bothers me when they call them “side ” effects.

          • That’s a really good last point. The term, “side effect” is used incorrectly to indicate different conditions and so it can be quite misleading.
            We see side effects, withdrawal symptoms, and persistent damage to biological systems. Too many medical providers fail to see the differences. This allows the error of calling a withdrawal symptom evidence of a relapse to a mental illness or even an emerging mental illness.
            Why can’t medical providers observe this? I suggest that medical education is training as opposed to education. Training being “see this and respond with that”. Education implies learning to think and to solve problems. We’re getting the result of training.
            The Latin words reveal interesting differences.
            “Craft (1984) noted that there are two different Latin roots of the English word “education.” They are “educare,” which means to train or to mold, and “educere,” meaning to lead out. … The opposing sides often use the same word to denote two very different concepts.”
            Okay, I admit that the difference has no impact on practice, I just feel a bit better knowing that there is a reason for inadequate medical-thinking.
            The cry:”Why Don’t They Know” remains. Maybe they didn’t ask. Maybe they were trained not to ask.

    • Yes, 9/11/2001 caused me to have brain zaps, despite the fact I’d been taken off an antidepressant way back in February or March of 2000. Planned societal stress, long after one has been taken off an antidepressant, can exasperate and bring on the common symptoms of antidepressant discontinuation syndrome. And I think akathisia and dyskinesia are still missing from the list of common symptoms of antidepressant discontinuation syndrome.

    • Antibiotics!!! Me too!! I hate to say this because I wish it wasn’t true, but I believe you if you feel they’re connected. That one is an issue the internet (and the doctor) would have you believe is a dead end, a no-cure zone, a permanent curse. Not so. I had 4 rounds of azithromycin 3 years ago, and I have a stable gut now. I hope you can find some gut healing and that is impacts your side effects… as commented below, this is indeed evil. My heart goes out to you, Paxil is another one that is extra ruthless on the body

  13. I experienced tardive akathisia while tapering from a psychiatric drug. There are no words that can describe the agony of the intense physical and mental anxiety / anguish. To have your family watch you experience these symptoms which are out of your control and affect your thoughts and movements is traumatic for all. The horror story continued when my reported side effects were dismissed as emergence of more significant illness and prescribed more psychiatric drugs to tame the said effects. My worsening state included noise sensitivity, emotional numbing, depersonalization and derealization, a vocal tic, intrusive thoughts, 50 lb weight gain. I believed that doctors followed the Hippocratic oath, “first do no harm.” Four years later, I am still suffering from long term effects that have not diminished after stopping all medication.

    • I felt sick reading this. I believe you completely. I could try to “give advice” but that’s foolish. So I want to extend my sympathy and a piece of my heart. Traumatic for the witnesses as well, yes it is. And no, there actually are not words. There really are no words for it. Sending my love <3

  14. I’m going through withdrawal akathisia after coming off Cymbalta. At this point I doubt the hell will ever end. I was prescribed an ssri or snri of one kind or another for the past 30 years. Eventually they added antipsychotics, shocked my brain, and said I was borderline. For some people there is no way back from hell. I have zero support. I’m completely alone and was recently denied a medical appointment because I wasn’t willing to “coordinate it with your psychiatrist.” So I guess it’s just survive until my body gives out. I’m 54 and physically broken so maybe it won’t be too much longer. No one believes me so I’ve walled myself off from the few people who still deigned to speak to me. The last friend I had said “stop going to that mad in America website. It only feed your anger and despair.” She compared it to an alcoholic taking a drink. I have no faith left in humanity.

    • That is so sad, Kate! I can say that I absolutely believe you. It is not hard at all to believe. There are others who will believe you, too. I think you can connect with those who really do understand. As for the rest, they can go ahead and take their drugs and deceive themselves. But once you’ve seen “the man behind the curtain,” you can’t believe in the Wizard any more.

      • Thank you, Steve. I was actually planning a move to the Springfield Massachusetts area because of the recovery Community there and the chance to be around people who had similar experiences. It seems that those are the only people who can really understand. Then covid-19 arrived and I’ve been in a state of limbo / paralysis ever since, wondering what to do. I’m grateful for this website and was so hurt by my friend’s comment that I cut off contact with her. Maybe a mistake but as much as I’ve tried to explain the situation to her, she thinks it’s something I can just put behind me. I completely relate to the idea of having a wolf at my heels and dealing with an existential threat. One of my biggest fears is becoming physically unable to care for myself and placed in a nursing home where I believe I would be in danger – definitely of being medicated and possibly of receiving more shock treatments against my will. When I was briefly placed in a nursing home after fracturing my ankle a couple of years ago I was made to take Wellbutrin in addition to the Zoloft I’d already been taking. I explained to the psychiatrist, who I saw once for 5 minutes, that Wellbutrin had made me very agitated in the past and I didn’t want to be taking it in addition to the Zoloft. She said that the Zoloft wasn’t working because I was still depressed and that whatever the effect I thought I got from the Wellbutrin, that was in the past so it would be different now. I was only in that facility for a couple of weeks and I can’t imagine what would happen if I was in a place like that long term. I don’t have any family. I’ve looked into the living will kind of thing, the thing that would give me some power to say I don’t want this or that done to me, but my understanding was that the living will needs to be carried out by a family member. So I don’t think anyone who is not in a similar situation can understand that this is not something in my past. I suppose if I get lucky and use a lot of self-discipline I might be able to get my physical health back to a better state, but most people as they age needs some form of assistance and that terrifies me.

        • Zoloft (Sertraline) is one of the worst drugs for akathisia – it inhibits two important metabolizing enzymes: CYP2D6 and CYP3A4 this is why people become toxic leading to akathisia and toxic psychosis. CYP3A4 is a sink enzyme that picks up what the other enzymes don’t deal with so if a drug inhibits that…..boom. The evil thing KateL, is that there has been a gene test to ascertain the ability of peoples enzymes for over 20 years, this test is now sophisticated enough to test for CYP3A4. But the doctors don’t want the patients to have the test and you can’t get it done without them signing a form.

          • streetphotobeing, that’s fascinating. And infuriating, and typical, that doctors and drug makers keep this information to themselves and even if people are able to dig up information about the drugs, they need the Dr to order the test. So typical.

        • One important thing about the CYP 450 enzymes it the fact that everyone has them. Individuals have differing CYP 450 activity though. The intermediate metabolizes are somewhat slow to clear a drug or other toxin from he body. The extensive metabolizers are quick to clear drugs. This partly accounts for the degree of difficulty in tapering CYP 450 mediated drugs.
          Although we inherit the activity, we can induce and inhibit the action. Foods and drugs can do this. Some antibiotics will induce the cYP 3A4 enzyme causing lower than expected drug levels. This can cause an extreme drug withdrawal state. I’ve been there. I didn’t catch on for three weeks. No it wasn’t Cipro or Levoquin.
          Then there are the inhibitors. Grapefruit juice gets a lot of attention to the exclusion of the inducers.

          My concern is unnecessary drug exposure. It seems that people who become dependent on a Benzo often had had a previous exposure. Might that be true of other drugs?
          Okay back to the subject, I don’t need genetic testing to know my CYP 450 status because my benzo-experience let me know really quickly. One supposedly long half-life benzo was effective for four hours. and the short one lasted for two hours.

          So when we hear that a benzo has a long half life we assume that half-life is a function of the drug and not of the “host”.
          Okay half-life and duration of action are different things, but the question is the same.

    • I feel for you KateL people were not supportive of me either when I had akathisia and many many other psych drug induced problems. You are not alone here.
      And if people want to get on your back about visiting the site I’d simply stop telling them you visit here. Really you’re an adult it’s none of their business to be deciding for you what you do.

      • Thank you, ThereAreFourLights, yes, sometimes coming to this website and reading the posts and the comments is the only thing that reminds me that this is not all in my head. There is nowhere else I can get this kind of validation. As much as it pains me to hear what’s happened to so many others, there is a comfort in it as well because it tells me that all that time I suspected my symptoms were due in large part to iatrogenic harm, I didn’t have the faith in myself to follow through on that.

    • Katel.
      Your friend likes to blame instead of support. In truth, many people run out of things to say so they might say desperate things, but they should just admit that they are short of wisdom. That walling off is just an attempt to maintain some dignity for yourself and to not be defined and judged. And that becomes more important as we age.
      I agree with Steve, once something has become illuminated, by that inside “aha” moment, there is no turning back. It is why many experience the “gee, I wish I knew then what I know now”.

    • Good Lord!! The people who speak to you like that are heartless. I know the experience you’re talking about: when it gets “too real” and everyone (everyone!) leaves. Tragic, and weak of them. Although I doubt your strength is much consolation for you in your grief. I believe you, for what it’s worth…. as if there’s a reason to doubt you, considering what we all know now. You are not alone in the recognition of this evil thats been done to you, and others. 30 years!?! The industry really has no shame about what they do to us. Especially as women. As for the foolishness of people implying you’re “addicted” to MIA (?!?!), well some people choose to address their pain and grief and to learn and understand more about the issues they face, like you’re doing by surviving and checking in here. And others choose to shed that discomfort by insulting people for their reactions to physical torment and injury. Pitiful of them. We believe you, there isn’t doubt. Im sorry for your grief and your undeserved and horrible pain, Kate. <3

      • Thank you, KindRegards, yes, looking back I see how much misogyny entered into the treatment that I received. I had a good mind and found so many holes in the logic of my treatment providers, and wasn’t shy about saying so. This led to a lot of harm. I can see that now.
        Actually it was probably even more than 30 years. It started when I was 17 and the board of education sent me to a psychiatrist because I dropped out of school and their numerous calls to my parents or ignored. She immediately put me on Elavil and I saw her once a week until the day I graduated at which time she terminated treatment because she stopped getting paid, and she left me with a full bottle of Elavil. I only learned the term akathisia within the last year and I’ve seen lists of drugs that cause akathisia or can cause it and Elavil is on it. I know there are so many for whom the drugging started even earlier – when they were young children. That the general public does not see this as a crime and human rights violation is beyond me. Now they have chewable adderal for children who are too young to swallow a pill, and the FDA is fine with this…I don’t get it.
        Thank you for your compassion.

    • “No one believes me”

      I do too.

      “so I’ve walled myself off from the few people who still deigned to speak to me.”

      Me too post being tortured and kidnapped, and having the ‘good faith’ defense applied via fraud, slander and psychological torture by people who have excuses ready for anything they wish to force on other humans without their consent.

      “stop going to that mad in America website. It only feed your anger and despair.”

      That comment got me thinking about false hope. Ever start getting the feeling that there are people out there that DO care? Don’t.

      “I have no faith left in humanity.”

      Me neither, though I do have faith in my God, who has come into the fire with me and has shown me why I should have no faith in humanity. They simply don’t give a shit. When people will openly stand and watch as the State tortures and kills citizens for complaining about public sector misconduct, we have made the transition to the point where there is no humanity left to have faith in.

      Not unusual where there is a lot of money to be ‘appropriated’ by those in positions of power. I often consider the wave of popularity our Premier is enjoying at present and think ‘Hitler was a popular man at one time too’. And he used that popularity in much the same way, to pass inhumane laws that allowed he and his henchmen to enrich themselves at the cost of others. Any wonder they are considering laws that would deny anyone the right to make the comparison? And imagine, they have denied a wealthy man the right to access to court to seek remedy, and the public is cheering them on in this removal of a human right. Deny the person you hate the most their human rights, and you have denied yourself those same rights.

      That is something I always think about too, that those who say that what was done to me was lawful, fine and dandy, are opening themselves up to being ‘spiked’ and having items planted on them for police to find and start off the cycle where they can be tortured and kidnapped by police. One in, all in. Or will the copy of the Criminal Code be found if it is certain Party members? It seems our ‘hard border’ closure (which still allows thousands to enter) depends on who you know, not what. Like back stage passes being handed out by our rock star politicians.

      • Thank you, Boans. Yes there is maybe nothing so painful as false hope. I have open myself up so many times to the possibility that I would be heard, weather by a doctor, a naturopath, a family member (no chance), a friend. I try to tell them what happened and I see the defense has come up in their eyes and then they will interrupt or tell me about some coping skill that I need to learn. I remember hearing Amanda Knox speak once and she said something about the fear that people have around her, that they are somewhat programmed to believe that someone and her situation must be guilty, because if she is innocent that means that this kind of thing could happen to anyone and that thought is too frightening for most people. I think a lot of people come to the conclusion that I am wallowing, feeling sorry for myself, playing the victim. That’s a part of it but I think a small part. More than that I want to be believed. Unfortunately this website as the only place where I feel that I get that kind of reception, without skepticism.
        I really need to work on my faith in something, my spirituality. I need to find a way to make meaning from what has happened because the idea that it was all just random is very painful. I wish I could say that I’ve learned something from everything that’s happened but mostly what I’ve learned is not to trust anyone.
        This may sound really out there. But I think there’s a child in me that is still desperately looking for Hope comfort and love. I had thought that that child was dead but now I see that as long as I’m alive that child will be too and I’m the only one who can comfort her. I need to find a way to be mother and father to myself.

          • Thanks, Steve. I’m going to try to move, again, for the 5th time in 6 years. I don’t know where I’ll go… just far enough away that maybe my medical records won’t follow me. This way if I get sick I’ll be able to have a medical emergency or see a doctor and not face judgement based on what’s written in my medical record/medical rap sheet. I’d like to have a dog or a cat at some point. The idea that this is still possible is what keeps me going.

          • “It’s almost like escaping domestic abuse. You need a new identity in order to escape the abuser hunting you down. Very distressing!”

            I’d go as far as to say it IS escaping domestic abuse. These people can invade your home at a time convenient to them, snatch you from your bed and subject you to assaults that are concealed as medicine. The law of no consequence to them, and their pride and narcissism proof that they believe they ARE gods. Community Treatment Orders allowing them to move in with you and start abusing you in your home. That’s domestic abuse all enabled by our Politicians who claim they are doing what they can to reduce it, and then kicking in our doors to get access to victims lol.

            I look at my situation and realise that when my wifes abuse wasn’t getting her what she wanted, she called in reinforcements. The need to break the law in that regard of little consequence, these people are in that sense terrorists in that they want you to fear them. (of course I have no fear of them, it’s my God I fear. He doesn’t do magic tricks to conceal wrongdoing. Their fraud the equivalent of a three card monte)The law of no consequence to them, and their pride and narcissism proof that they believe they ARE gods. Police prepared to neglect their duty and enable them for their own benefit. Torture and kidnapping concealed with negligence, fraud and slander, and a public too afraid to even speak up. Public sector misconduct and police corruption being referred to oragnised criminals in the mental health system? I can see how that might work, for a while at least. And now, with a mental health professional in every station, police are free to torture citizens and have then immediately taken away for treatment of the trauma that causes. It will save the taxpayer police taxi service fees lol

            And of course the prophesy has been show true to me. Look at them scurry and blame one another when their vile conduct is exposed for what it is. They beg for mercy and relief from the fire, and none will be given.

            KateL, I’ve no idea if your a believer or not but I heard a very wise thing said about the four men in the furnace. They didn’t ask their God to take them out, they invited Him in to the furnace with them. Got no idea if it will work but have you asked?

        • Kate, what you express here at MIA often feels very familiar to me. I was severely depressed for many years before I found out I had and got treatment for lyme. And I had loads of trauma and other struggles on top of being physically ill that I had to contend with. Some days still kick my ass. I just want you to know you aren’t alone. Sometimes the only thing you can do is to doggedly put one foot in front of the other and have the temerity and defiance to persist no matter what gets thrown at you. Determination has seen me through when hope failed me. When the system fails you as it did to me, you have no choice but to save yourself. I will be rooting for you.

      • evanhaar, I will look into these Thank you. I have an entire cabinet of supplements but don’t take any consistently because I don’t really know what I need. My modus operandi is to see a naturopath maybe once or twice, then deciding that they don’t get it/are talking down to me/are trying to rip me off. I often purchase some supplements before I quit. When anyone takes a tone with me or when something about their demeanor reminds me of being in a and an appointment with a psychiatrist, I swear I going to a PTSD response.
        Or I’ll read something and buy them online. The brain fog is tremendous – that’s part of the problem. But I will look into the manganese and b3. There are so many different B vitamins!
        I do try to stay hydrated. Doing better with that.

        • Katel I know exactly about that PTSD feeling. I experienced it after trying to deal with my lung disease, due to the cruelty I experienced when going to the specialist or hospital. It took me a few days to try and put meaning to what reaction I was experiencing after time and again being treated like shit.
          I tried to reason with them and the last time I went to ER due to shortness of breath, I told triage to put me in a psych ward for my shortness of breath. They were stumped and refused, saying in that crazy singing voice “we don’t think you’re crazy” and “you can’t breathe” I was too short of air to ask her if people in psych are crazy. I decided then and there that Canada was showing me just how far they will go to try and minimize a patient. And that without any real psych record or ever being a hypocondriac.
          They showed me that even though one is not nor ever has been a criminal, that the medical people can treat you as one. And so they showed me that indeed they treat others who do have “diagnoses” also get treated like shit. And it makes no difference whether someone has a diagnoses or does not. Many doctors and nurses simply suffer from that weird personality that haunts them from childhood, where they end up being mean kids just because they now have licence. I have seen some very cold eyes, the same eyes that would have been the doers in assylums.
          I never pretend that being a doc or nurse is not hard work and that we patients are not difficult, since we are chronic and we might become really scared. But they drove me underground, caused me to pick up stakes after 30 years in my home and become obsessed with how the rest of my life should look. And I want NOTHING to do with them anymore.
          If they had simply told me that I was stuck with the symptoms and that it’s a shit disease, and if I could have found others beyond the respiratory rehab run by wide tooth grinning “professionals” that also tended to minimize. Doctors, nurses and patients COULD actually have decent relationships if they took into account that suffering is very real and even if they in their little heads think that their patient is “overreacting”, they do not know this for a fact. It just ends up being an ugly situation, and it is one huge reason why so many doctors and nurses are not satisfied with their jobs, they were advised not to “connect” with their patients, to let that “emotional” side not get in the way and it’s wholly detrimental to everyone. And whenever they respond to one patient in negative ways, it affects families.

        • KateL,
          Thx for responding. I wanted to try to assist one more time—quickly before breakfast. First, large amounts of vitamin C (I take sodium ascorbate from Nutribiotic, & some ascorbic acid, which is acidic) right before diarrhea occurs (through trial and error), can be enormously helpful for detox from all kind of things. There’s debate on dose & cheap synthetic C vs the C-complex that I talk about on my website, under the clinical nutrition section: http://www.evanhaarbauer.com; designed to make things more accessible. I take standard cheap synthetic but high quality from reputable brands. Whether or not my website interests you, I went ahead and searched ‘akathesia’ & ‘tardive diskenesia’(sp?) on the Journal of Orthomolecular Medicine website:
          https://isom.ca/jom/. Unfortunately it wouldn’t link to the results, but you can scroll down a bit and enter the proper search term you’re interested in, from years of publications, including highlights of the B3 & manganese. There seem to be many items that come up. I really like that website. Hope this helps.

        • kateL,
          P.S.: with me, with my nutrients I was getting better & worse simultaneously, which is odd. I still ended up brutally suicidal until my cheap generic ketamine, and this had more to do with my brain & soul. The nutrients, though, helped heal my nerves & muscles, including brain just not enough, and I believe prevented me from going into a catatonic-like condition of painful rigid muscles & non-fluid painful nerves. It was very slow, painfully slow, but built up over time by micro-changes cascading into macro-changes. This was through the simultaneous slowly stopping of cigarettes and refining nutritional supplements usually 3xday, after meals. Programs can be tailor-made to be either cheaper or more practical—such as a modified program of cheaper or less supplements taken less often, but you can’t go too low or less often if following some of the usual standards. BTW, I talk on my website about how I believe B3 (as niacin) may have caused permanent Rosacea on my face from flushing beet red every morning for 4 years. For many, the flushing stops/lessons with large dose, continual use, but for me didn’t. Sometimes in the literature you get: ‘if flushing becomes intolerable, the person will have to switch to a non-flushing form of niacinimide or inositol hexaniacinate’, or ‘if flushing doesn’t stop, they will have to switch’. In my opinion, they don’t highlight these enough. For me I ‘tolerated’ it fine. But I wish I had switched a lot earlier bc it seemed to lead to permanently dilated capillaries in the face and cystic painful relentless acne. I now have to take daily antibiotics until I can feel comfortable risking side effects of Accutane. I’ve also had to lower my doses due to headache, but took non-flushing forms for years without a problem. Too high doses of niacinimide for example can cause liver damage. I also experienced that and overcame it. So….some things to consider with B3! Also, manganese is a tricky one and doses are small; I don’t have a lot of experience with it. In terms of working with a ‘practitioner’, I completely understand your perspectives on that. ‘don’t get it, talking down to me, ripping me off, like psychiatrist triggering PTSD’….I’ve felt each of those things over the years!!!! F&@$. To leave on a positive note: ;)….

          • Thanks Evanhaar. Yes, the proper use and tailoring of supplements can be very complex, and hard to figure out with this brain fog. The last naturopath I went to, I made very clear, prior to signing up for a very expensive, “personalized” program, my history with psych drugs and the fact that I was in withdrawal from Cymbalta. I filled out all the paperwork, met several times with the “salesperson” on the staff (who called herself a case manager), but in my first meeting with the naturopath, he was surprised to learn that I “hadn’t been taking my meds” (he hadn’t read my intake forms, I guess) and tried to make it seem like I’d misrepresented my situation. I was outta there. Most of these people (most people) have never heard of akathisia, so how can they really help? It’s nice to feel like someone will hold my hand/can lead me out of the woods, but I need to find my own way.

          • I just did a google search on Cymbalta as a friend was telling me she has been taking it ‘since it was released’.

            The first two search results contained these little gems

            “This medication works by helping to restore the balance of certain natural substances (serotonin and norepinephrine) in the brain.”

            “Duloxetine affects chemicals in the brain that may be unbalanced in people with depression.”

            I thought this myth had been laid to rest according to Ronald Pies? I get it that the second quote says “may be” but …… really?

          • Note how cleverly they say that “chemicals… MAY be unbalanced,” but then claim that the “medication” helps “restore the balance” of chemicals that they later admit they don’t know are actually “imbalanced” (which is why they say MAY). It is a clever workaround of “truth in advertising” laws, but I think it should never be allowed, because by claiming to restore the “balance,” they are essentially asserting a truth that is actually not known to be true.

          • “It is a clever workaround of “truth in advertising” laws”

            It reminded me of the three letters sent to me by the FOI officer when she realised that I wasn’t actually anyone’s “patient” and that her refusal to provide me with my medical records (and the conspiring with my wife to conceal criminal offences) was a further offence committed against the whole community.

            One letter asking me “is this what you want?”, the second telling me “this is what you want” and the third requesting a signature from me. I realised later that what was being done was having me sign a document that could be used later to counter any claim that they hadn’t provided me with the information I had requested.

            The truth (in advertising, eg “patients rights”) is that I had a right to those documents, but that the FOI officer had been conspiring to pervert the course of justice with my wife to conceal them from me on the grounds that I was a “patient” and she was my “carer”. Nasty piece of work when you realise they are doing this to people who ARE patients. Committing offences against them and then having them sign documents to conceal their criminality before anyone has the chance to look. Insider trading lol

            When that conspiring didn’t work, she needed a way to conceal her deliberate negligence and deception from others should they take a look and realise what she had been doing (ie concealing the torture and kidnapping of a citizen for her colleagues). Noble corruption if you will.

            They knew all along what documents I had requested. Though by pretending they didn’t, and then after 6 weeks of conspiring and gaslighting having me sign something to give the appearance that I hadn’t asked for them left them in the clear when they removed the other two letters setting up for the signature. Clever, and in all the years I served as a public officer dealing with ‘dodgy’ contractors I’ve never seen this one. Though I guess ‘dodgy’ contractors need to worry about going to prison for such dealings, FOI officers on the other hand are being encouraged in this conduct by the State (given the response from the Minister when she assumed the real set of documents had been retrieved by the police). All good with the fraudulent set sent to the Mental Health Law Centre, and the ‘cover your ass’ fraud by the hospital to conceal their misconduct.

            My failure to sign and allow them the right to extract themselves from these offences probably the reason for the “formal investigation” (‘fuking destruction’) by the Operations Manager, and the distribution of the fraud to the Law Centre (the FOI officer obviously not prepared to go that far with her criminality, best left to someone else to ‘authorise’ the “editing” of the documents. P.S. make it look like a mistake by the indigenous girl in the office will you?).

            I’d love to have been a fly on the wall when they were discussing these matters ‘behind closed doors’. Their mouths showing the contents of their hearts. Not, how do we help this person we have tortured and kidnapped but …. how do we conceal the truth and have him silenced.

            It’s given me significant insight into the way cancer spreads, a gradual poisoning of vulnerable cells, until the whole organ requires removal.

            And I guess given that these people were left in their positions for years after doing this to me, they have most likely done it to a lot of others as well. Many of them probably dead as a result of the chemical imbalance they cause with their gaslighting which tends to result in suicide when they are released from the hospital. Turn their minds inwards and convince them no one will help them (which is true of police who will actually assist these criminals disguised as ‘medical people’ with the right paperwork). The petty thefts of patients belongings etc after ECTs easy cover ups for the Operations Manager who puts the loss of valuable jewelry down to the memory loss from the ‘treatment’ (I like her style to be honest. What good are $2000 gold chains to a mental patient? And the Minister did state on Parliament “you can’t listen to them, they’re patients”).

            I wonder about all the work committing these acts of fraud creates. I remember Billy Connolly speaking about how he always told the truth because he had such a bad memory, and couldn’t remember the lies he had told. Funny, but it was also a comment that had a big effect on me. What I said may not always be right, but it was the truth as I knew it. And of course I documented my truth all the way along, the hospital relies on the manufacture of truths post hoc, with fraudulent documents and selective lies to corrupted others. (have police induce an ‘acute stress reaction’ for me would you? Tactics used in Abu Ghraib standard operating procedure for our Mental Health Services)

            And worst comes to worst, just kill them and be done with it. Who are they going to complain to if we do? Us? Got some bad news people, complaining about being tortured and kidnapped by the State is a mental illness, unless it is a State that we don’t like. You will be ‘flagged’ by your torturers and denied access to remedy, your complaining is a symptom of your illness, not a result of the trauma of being tortured.

            I would simply like to leave, but even that right is being denied me. I’m fine with them torturing and kidnapping etc. I’d just like to live in a place that doesn’t think they should sign agreements (like the Convention against the use of Torture) and then torture and manage ways of concealing those acts rather than implement the protections. I’ve nothing to offer such a government other than my mental illness of not agreeing with them. Tell me i’m delusional for believing that such a place exists. tell me i’m delusional for not believing i’m alone with this thought that there are others out there who do not agree with citizens being ‘spiked’, arbitrarily detained before police interrogations? The use of the Mental Health Act to conceal public sector misconduct is an absolute disgrace.

  15. https://rxisk.org/akathisia/ There is no mention of SSRI’s causing Akathisia initially only about on withdrawal. Well they can & due cause Akathisia and it is often ignored by GP’s & psychiatrists. These are very dangerous drugs and are being handed out like smarties by many Dr’s from everything from PMS to chronic pain conditions like ME/CFS/FMS & Endometriosis. They are being pushed on unsuspecting patients & there complaints are ignored & they are often forced to taken them against their better judgement for what was are physical conditions. Shame on the Dr’s who have caused so much damage to people lives where is your conscience in all that.

    • I had akathisia for years, I so wish I could go back and take smarties instead!!! And I agree, when starting an SSRI people can get akathisia then too (not termed tardive akathisia mind you).

      I completely agree with Dr. Shipko that there is no adequate way to warn someone about what akathisia is like, as such I think the time has come to demand the drugs be grandfathered off the market.

      Keep them around ONLY for those who need them to taper; can’t get off them; or to reinstate. Anyone who never had them before should be banned from getting them.

    • Yes indeed. I have experienced this and was told that it was just a side effect that would go away. I chose not to go back to ask more questions. Any complaints one has is not validated, so one really has to consider how much dignity we want them to steal from us.
      I think it’s important to not just educate kids on the “don’t let anyone touch you if it’s not comfortable”, but also, don’t let anyone define you.

      • … don’t let anyone drug you either, as far as you can help it. But sadly Sam a lot of this diagnosis and drugging is already supervised by parents, well-meaning and otherwise. But I agree with you. And GOOD ON YOU for not going back to be dismissed again! I did the same and got a lot of flak for it. I understand why you didn’t waste more of your own time!

    • No mention??? That surprises me!! I think of akathisia as primarily a result of being on the drugs, not primarily a side effect of withdrawal (although I’m biased because I had my first akathisia from my 9th year on Prozac). It would be wise of them to include that.

      And another thing I’m sure you’re familiar with…. calling the drug-induced akathisia “more serious illness” or “escalating symptoms” or (my favorite!!) “hypomania.” How can these doctors not know what the drugs DO? The age-old question. They have no conscience i guess, when they slowly learn to see patients as numbers, not people. Not to mention, women are less human of course, so doctors didn’t even have to invent THAT method of discrediting people themselves!

  17. Bananas excellent point about “training”.
    I think Bill Wells has brought that into conversation before in another blog.
    Training is learning the material in front of you. And that is enough for
    an assembly line, (which psychiatry really is) but certainly not good enough when dealing with
    humans OR any animal.
    It is completely biased and prejudiced and should be embarrassed to “train” their young and
    bright minds in anything so draconian.
    There are probably a few great minds that really want to speak up, but they can’t. For the same reason the subject of psychiatry can’t. It is their way or the highway, and what kid wants to throw out mom and dad’s money after taking up a seat in psych class.

  18. Yes, Sam, I think it’s hard for medical people to deal with the system they’re a part of, they must see every day how inadequate it is. And then there are the bullies, and the ones who will treat patients like criminals when just acknowledging that a person is in pain, scared, exhausted – would go a long way.
    “…they caused me to pick up stakes after 30 years and become obsessed with how the rest of my life should look…” – this is where I am now. I gave my landlord notice and am busy packing.

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