Invisible Pain

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In my practice as a therapist I often work with people who have been seriously hurt by the practice of psychiatry, either directly or indirectly through family members. Many of them started taking psychiatric drugs for moderate depression, or for some anxiety, or for panic attacks. But as time went on, their doses went up. More meds were added. By the time they realized the drugs were making things worse, they were already stuck on a large cocktail of psychiatric drugs. The side effects worsened and became intransigent. Increasing depression, lethargy, loss of libido, confusion, mental fog, weight gain, lowered immunity and poorer sleep became the norm. Drugs were added to combat the side effects, leading to more side effects. At some point the realization settles in that the psych meds are causing tremendous suffering, are causing iatrogenic illness.

The sad part about this common story is that when the person finally decides that the psych drugs have caused deep harm, and that they want to stop, the road towards coming off these drugs is long and arduous. Doctors often encourage a very fast taper. But when the person tries to to taper off too quickly, many find that their suffering is magnified a hundred fold. They are, in essence, stuck with the drugs that made them sick, and have to spend a great deal of time, energy and personal strength to manage a slow taper, a process that can sometimes take years.

In the process of coming off psychiatric drugs, there is little cultural support for the person who is tapering. Though the withdrawal effects of drugs such as antipsychotics and benzodiazapenes can be arduous and overwhelming at times, most people with no experience with psychiatric drugs have little understanding of the challenges of tapering. Though each class of drug and specific medication offers its own personal Hell when tapering, there is some overlap. Some of the symptoms include severe anxiety, panic attacks, mental confusion, insomnia, somatic pain and depression. The suffering can be debilitating for some. The term for longstanding problems associated with antidepressant tapering has been called SSRI discontinuation syndrome. Symptoms such as brain zaps, flickers, dizziness, derealization and suicidal thoughts are so common that numerous on-line support groups such as paxil progress and surviving antidepressants have formed to help people through a taper.

Essentially the nervous system goes into a state of shock as the drugs it had become accustomed to are taken away. The withdrawal symptoms of these drugs are little discussed and often glossed over by doctors in medical offices, outpatient clinics and psychiatric hospitals. Many doctors are grossly ignorant of these all too common complications or simply choose to ignore them. On-line communities have had to form as a way of creating alternative methods of supporting people through this time.

When someone has become habituated to street drugs such as heroin, cocaine or methamphatamine, numerous resources and rehab centers are available to help a person clear themselves of the drugs. The stay in one of these centers is generally no more than a couple months. But in the case of psychiatric drugs, symptoms of withdrawal can actually be much more challenging and much more protracted. A rehab center that lasts a year is simply not a viable option. So people are forced to tough it out on their own, perhaps with the help of on-line support.

In the midst of this iatrogenically caused suffering, a person tapering off meds may be further challenged by having little support or understanding in the larger world. How do you explain the sheer Hell of a benzo taper to your neighbor, or parents at your kid’s school? Even if you were to do so, there may be feelings of shame and embarrassment for some. But not telling acquaintances leaves some feeling increasingly isolated, having to create a mask of false happiness when talking to people. The suffering induced by psych drug withdrawal is compounded by societal isolation and lack of understanding.

Recently I went through a bad case of shingles, a terrible illness that attacks the nerve endings in one part of the body and causes immense unrelenting pain. As I suffered through it, I told many of my friends and acquaintances what I was going through. I received a lot of sympathy, offers for help and support until the illness cleared up. I felt grateful to have so much love and care. But when people go through iatrogenic drug withdrawal symptoms over a period of months and years, it is far more challenging to receive wider support. People are unaware of the horrors of tapering, or don’t think its a big deal, or simply don’t know how to respond. It is not a “true” illness as people understand it. It is not societally accepted, like a broken arm or cancer. With cancer, it is easier to discuss weight loss, chemotherapy, bed rest, eating healthy, etc. With iatrogenic withdrawal illness, it is much more challenging to tell an acquaintance “Well this benzo taper is making me feel anxious all the time. I often get a sense that things don’t seem real. I have this awful tic in my eye and I’m not sleeping more than a few hours a night.” Symptoms like these are often kept hidden, secreted away because of a lack of public understanding.

NAMI and other organizations spend considerable time publicizing the need for greater support and recognition of “mental illness” as a way of reducing the stigma for those who suffer. Their underlying position is that people will do better if their emotional distress is out in the open and treated properly with psychiatric drugs. But they neglect the millions of people who have tried that treatment, and have been left crippled by those drugs.

I think of how people wear colorful wrist bands to support cancer research. “Find the Cure”, some of them say. Perhaps we need to wear wrist bands that support people who have been deeply damaged by psychiatric drugs. These wrist bands would raise awareness of some of the incredible harm that is being been done in the name of “mental illness treatment”. Survivors of iatrogenic illness could wear them but so could anyone who supports raising awareness of this issue. It would start conversations, lead to more questions about the psychiatric model of treatment.

Ultimately, the pain inflicted by the drugs is only one aspect of the suffering. What is often worse is the feeling of being silenced, shut down, and isolated from the wider community. Greater public awareness of psychiatric iatrogenic illness can lead to a deeper conversation; a conversation that suggests that there are many ways to help people in emotional distress, and that these drugs should be last on the list.

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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.

68 COMMENTS

  1. yes, and thank you.

    the isolation one faces when critically ill with withdrawal syndrome was the entry way to the darkest period of my life. The sense of abandonment only deepens the iatrogenic injury. I have seen far too many people face the same thing.

    this is one of the reasons I continue to do the work I do.

    thank you again.

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  2. I have a collection of posts that speak to the isolation and many have found them helpful at various times when going through withdrawal…here for any of Mad in America readers who are facing such isolation…

    The isolation and sense of abandonment many people deal with when sick with protracted withdrawal illness. http://beyondmeds.com/isolation/

    And I want to say, it gets better. Much better. Hang in there.

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    • Yes indeed Monica. Please folks, if you haven’t had a chance to do so already, please visit Monica’s site at Beyondmeds.com and follow her through facebook. She offers an amazing amount of resources for anyone coming off psychiatric drugs. She delves into the really deep issues surrounding psychiatric iatrogenic illness, and more importantly, she provides hope for people who can often be feeling despair.

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    • Thank you Monica for all you do. And, Jonathan, very well said. It is shameful we live in a society where the medical community is so insanely paranoid of malpractice suits that they cover up easily recognized iatrogenic artifacts by creating “mental illnesses” with appalling drug cocktails, torture, and poison their patients – to the extent their medical “mistakes” have become at least the third largest killer of Americans.

      Then, due to the Wall of Silence, they leave the patients no choice but to have to research medicine themselves so they can medically explain the iatrogenesis. Mainstream medicine should be ashamed of themselves. (I’m still in the angry phase, Monica, but working on moving past that.) But what doesn’t kill you, makes you stronger, right? And thank God we all live in the Information Age now, and can research medicine for free.

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  3. Jonathan,

    Thank you so much for this article.

    After spending nearly 4 years in taperin off of psych meds, I was diagnosed with sleep apnea and have had a horrible time sleeping on the pap machine. I wouldn’t be the least bit surprised if some of my difficulties in sleeping were due to my sleep cycle getting messed up big time by being on these meds.

    And yes, other than online support and a few close friends who understand, I feel very lonely and isolated. It is like I am supposed to be done with this problem and move on to my next challenge. I wish.

    Thanks again for what you wrote.

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    • AA…yes I believe that the meds can often cause long term complications with the sleep cycle….which in turn leads to poor rest where a lot of deep healing happens. This can then lead to long term health complications. And it can all start with a doctor prescribing 50 mg of Seroquel as an off label prescription for insomnia or depression. Or it can start with a prescription of Effexor that leads to increasing manic feelings and difficulty sleeping.

      I hope you can find the support you need in an often very lonely process.

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      • Thanks Jonathan, I greatly appreciate what you said. It makes me feel better knowing I am not imagining these things and that a professional like yourself has acknowledged what I am experiencing is real.

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  4. Zyprexa withdrawal was hell unstoppable insomnia, panic attacks, nausea and vomiting that can go on for weeks and months, those incompetents at the E.R I went to and then up in psych consider all these things symptoms of psychiatric illness itself not withdrawal and attempt to put me on Geodon. This was 2007, I hope thing have gotten a little better but anyway I also lived the psych med withdrawal nightmare.

    “Rehab to get off psych meds” great idea and a necessary service but my question is it possible to bill insurance the same way as is done with alcohol , opiates ect ?

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    • Yes indeed Copy Cat…if you develop iatrogenic illness from withdrawing from the drugs then its your illness, not the drugs. Catch 22. You can’t escape their twisted logic. No blame allowed, no anger, no responsibility taken.

      And yeah, like I said…psych med rehab really is an unlikely possibility because tapers just take too long. Most people would have a hard time leaving their life for a month, let alone 6 months, a year, two years.

      As to insurance companies paying for receiving support through a taper….HA…that would mean that the medical model is somehow at fault…that it is leading to hundreds of thousands of people becoming sicker…not better.

      So sorry you had to go through a torturous Zyprexa taper. Thanks for your comments.

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      • Smaller doses for tapering off the meds might help.

        Some doctors are starting to think it would be better to let heroin addicts have smaller doses of heroin instead of methadone, because the addicts understand their tolerance for heroin.

        Is there any reason why slower tapers with lower doses wouldn’t work? After reaching the lowest dose, if some of the drug seems to still be required, couldn’t a person start taking those doses further apart? The primary aim is to reduce the violence done to the body while the dependency is weakened, right? The addict is the best judge of what feels tolerable.

        Even some experts on rehab for people with alcohol addiction is lowering their consumption instead of treating strict abstention as a necessity.

        Our society has a lot of odd ideas about addiction and “addictive personalities”.

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      • Taper , what taper ? No one bothered to tell me about withdrawal reactions from this “non addictive” little off label pill for insomnia. The first time at the E.R after the Rx ran out the nurse came to me and said “the doctor can write more Zyprexa if we ask him nicely” I will never forget that “if we ask him nicely”.

        We asked nicely but 2 weeks later those ran out and I was back at the E.R demanding help with anxiety and insomnia from hell, nausea vomiting and that time got sent up to psych and went back to benzo dependence to treat the withdrawal cause at least that didn’t include the zombie-anhedonia where music , driving nothing in the world is fun at all effect from Zyprexa. They wanted me to take Geodon, I was lucky this place didn’t do the injection threat thing when I refused it.

        The Zyprexa thing was the worst, worse than Xanax withdrawal for me, My psych med story was written in hell went on for years and I know there is a huge number of people living that hell out there right now sick at home, in emergency rooms , psych wards , it’s just scary.

        If any readers are living the psych med nightmare right now don’t give up, they all said I was hopeless and needed heavy medication I guess forever. Not true, I am O.K now.

        I was really sick for many months, I couldn’t really eat, think right but anything was better than that can’t feel fun no motivation zombie existence.

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        • And if “we” bark at him?

          I really hate the baby talk.

          I had a grand mal seizure discontinuing a benzo as prescribed. I had bought gel caps in anticipation of having to divide the capsules to stop withdrawal from interfering with my demanding job; but I had the seizure before I got that far— didn’t see that coming, at all. First ambulance ride, first IV, first cat scan.

          Zyprexa does sound like hell. I’m worried about the amitriptyline I take for nerve pain and sleep. I hear it’s just as bad. I take the maximum dose. I’ve looked it up many times, but yesterday I found out that it raises my risk of heart attack by 35% and the drug itself actually works its way into the heart muscle. Yikes.

          It’s good to hear that you’re o.k. now. Light the way. I think knowing that it can be unbelievably hard helps to prepare people for the worst and encourages them to pick their battles wisely. There’s never a really great time to go through a horrific experience like withdrawing off some of these drugs, but I’m guessing having fewer obligations would help.

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  5. thanks for this. it is amazing how, so often on this site, i read the exact words i have been thinking in my head for years. quick background- husband stubbornly used benzos and other mind drugs ten years, on and off. horrible, terrible times for us and and our young kids. he’s “clean” now and has done a huge mind switch and realizes he was bamboozled by the whole psych/big pharm co system. feels better than he ever has. anyhow, on the worst days, i was asked in my community to cook meals for new moms, run extra carpools, watch other people’s kids, volunteer for the school, you name it … when you are really sick, not just made crazy (and your family made crazy) by drug companies’ greed, nobody asks you to do extra…they help you! just another piece of the nightmare.

    thanks to you for writing this, and to all the authors, for allowing me to be validated and for inspiring my activism.

    erin

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    • Thanks for posting Erin. So sorry to hear about your husbands descent into the pharmacological merry-go-round. When doctors suggest you are just experiencing mental illness as you are withdrawing….when you get little help from the greater community…when society has little understanding of the torture of iatrogenic illness, it can make someone feel very very alone and sad. And hopefully in time mad…and then turning that anger into activism as you say. Thanks and take care.

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      • oops- i meant to reply. i think i accidentally reported this comment!!! whoever monitors this site, i didn’t mean to do that !! it was, in fact, a great comment. i wanted to thank jonathan for taking the time to write back. on this journey, you feel like you are trying to explain the same thing over and over and nobody gets it. it’s important for me to communicate with people who “get it”.

        for a long time, everybody thought the world was flat. well, everybody can be wrong. and everybody who thinks the way to help someone who is feeling stressed or overwhelmed or sad for a time is to pour chemicals in his brain is WRONG.

        thanks for listening and keep up the important work

        erin

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  6. Sadly the drugs are first (and last) on the list.
    On the NAMI:
    “Taking medication for a mental illness is a good thing. Mental illness should be treated just like any other illness. If you had diabetes, you wouldn’t question taking insulin, would you? (…) Get treatment and experience how fun your life can be.”
    “My advice for other families living with ADHD would be: don’t pay attention to the stigma around medication”
    Even the language sounds like it was designed by the PR specialists. “experience how fun your life can be” – seriously? It’s hard to treat this organisation as anything but a proxy for drug companies.

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    • During my little forced stay, I noticed that there were three NAMI posters on the walls that otherwise had no useful signage. You’d think they’d at least post schedules for meal times and visiting hours in English and Spanish, but NO— just finding out what was going on was an exercise in bad family dynamics.

      Those NAMI posters were all the same list of artists who were diagnosed with mental illness postmortem. What is that supposed to do for anyone? Tolstoy was mentally ill? And we’re supposed to feel good about that, because—? I heard the social workers and nurses tell people repeatedly and they told my friend repeatedly to go to the NAMI website for “helpful information about mental illness”.

      So, I called my friend and asked him to do a quick search to see if NAMI was an astro-turfed front group for the pharmaceutical industry. It took him no time at all to confirm that.

      I hear NAMI is making changes and have dropped their pharma-funding. I’m guessing that many of them felt betrayed because they believed that they were a part of a real grassroots movement, finding support that they’ve desperately wanted and needed.

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      • Are these places all the same? “You’d think they’d at least post schedules for meal times and visiting hours” – I remember spending hours just to try to find out whom I have to ask for anything and being treated like an annoying insect…
        Btw, they fail even on their own propaganda – if Tolstoy was mentally ill and there were no drugs at the time maybe we should re-think this whole drugging strategy – seems like untreated mental illness and being a genius go together, or?
        From they website it does not seem like they’re dropping anything in terms of funding and also every recommendation they make ends up with “but this combined with drugs is going to help you best”.

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        • They may be all the same. It was clear to me that no one in the system knew anything about how to make an environment suitable and self-explanatory for transient groups of people. The staff spent most of their time being paranoid that patients might kill themselves with dental floss or a piece of scotch tape— I was interrogated over a request for a piece of scotch time I wanted to fix a game box— while patients went about begging for basic necessities. The patients became siblings in a household with parents who put basic needs of their disempowered “children” behind control and preferred that the “children” compete for attention.

          They failed in logistics, and appear to have done so out of a lack of respect and consideration for patients. Their little “jobs” the people they trusted could do without harming anyone resulted in people who may have not have washed their hands (and I never saw one of them doing so) touching every set of eating implements and setting places that no one was going to use at the tables, then putting the sets of plastic utensils wrapped in plastic back into the bin. It was completely unnecessary and unsanitary. For some reason, giving people the job of handing out washcloths, soap, and toothpaste was too dangerous.

          They also had containers with pencils that were covered in pink hearts and fru-fru on every table that made the commons look like the bedroom of a seven year-old girl with a princess complex. That was likely the work of the “art therapist” who clearly had issues of her own. I’m sorry about her failed musical ambitions, but the neuroticism was right up front. I could tell why she was there and so could other patients. We were a captive audience.

          The infantilizing was palpable and pathological. Being a fifty year-old adult, at the time, with a long history of working in positions of responsibility for others and doing a noteworthy job of it, I found the environment and the leadership to be incompetent, irrational, and pathetic.

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  8. Truer words never spoken. I was never so alone as when I had to take myself off of Celexa, Xanax and Trazodone. My P-doc said my “disease” was coming back when I reported my manic attempt at suicide. I fired him. Ten years of handing a monthly check to this quack was finally over. But no other doc would help me withdraw. Most said, “well, if he said you should be on them for life, maybe you should stay on them.” I wasn’t buying that. I was at my wit’s end and ready to take action.
    So I tapered with what I had left and it was a rapid and hellish taper. It should be against the law to prescribe such poisons. It took me over a year to begin to feel better. Thank you for calling attention to this little understood phenomenon.

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    • Engineer,
      I dealt with a similar situation. I was weaned off all but one drug, then handed over my family’s medical records by some decent docs and nurses in my PCP’s office who were disgusted by my PCP. She’d been covering up the sexual abuse of my son and was overseeing the poisoning of me, to cover up her husband’s “bad fix” on a broken bone of mine, since she was paranoid of a malpractice suit. I read through the medical records, confronted my lunatic DO/psychiatrist, who then declared my entire life a “credible fictional story” in his medical records, out of embarrassment at HIS delusions.

      My family switched to a different DO, he didn’t want to get involved, did take me off the last drug, but refused to treat my child for a simple ear infection. So I switched medical insurance groups and doctors again, and this time I wasn’t dumb enough to pass on my son’s and my medical records, and just started researching medicine myself. Today, doctors can share and cover up any malpractice with the HIPPA system.

      And talk about an industry that harms patients and colludes to cover up medical mistakes! I will say, however, I did have one nice nurse that followed my family to three doctors and helped to protect my children and I. Thanks to her. But neither I, nor my family, was warned to expect drug withdrawal induced super sensitivity manic psychosis. This resulted in more attempts at my life by a Dr. V R Kuchipudi, whose now been arrested by the FBI for killing many patients. And it’s a lonely road having to confess you were dumb to believe in the decency of doctors (and in my case pastors and your religion, since that’s whose still working to cover up the abuse of my child).

      “It should be against the law to prescribe such poisons.” I’m personally still working to recover from the betrayal. “Thank you for calling attention to this understood little phenomenon.” My best to you, and I’m sorry you were abused by the medical community.

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  9. This was so validating to read, and a good reminder that what I have been through is a pretty intense hell. It still is in some ways – even nearly three years after coming off all my meds (without tapering much, unfortunately). And I need to remember to grant myself the same compassion I so freely feel for others who are going through this.

    I wish everyone I come in contact who talks about “mental illness” could understand this:

    “. . . organizations spend considerable time publicizing the need for greater support and recognition of “mental illness” as a way of reducing the stigma for those who suffer. Their underlying position is that people will do better if their emotional distress is out in the open and treated properly with psychiatric drugs. But they neglect the millions of people who have tried that treatment, and have been left crippled by those drugs.”

    I, too, have seen the crippling effects far more than any long-term benefits of using those drugs. I have also experienced them personally. Thanks for your efforts to spread the truth!

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    • Mary Ann: Please what you just said to anyone who will listen, especially those in NAMI. Loved ones ;who try visit their loved ones in institutions are routinely being isolated and blacklisted from these institutions because word gets if they are supporting their loved ones right to choice when it comes to the issue of medications. Please help us spread the word,that while some consider psych drugs to be life saving, psych drugs cause some people to become chronically ill and cause them to experience frightening, violent reactions which are then labeled as ‘proof’ of the underlying illness. Please spread the word that doctors are experimenting with our children and covering up iatrogenic illness. They are often oblivious to the warnings of loved ones who witness the harmful effects of medications on their loved ones when it occurs. Perhaps people will believe you because you have lived experience. They won’t believe me. I’ve tried and failed.

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      • Mary Ann,
        I, too, suffered nothing but “Foul up[s]” with psychiatric meds. I’m quite certain, based upon nine years of research into medicine and the psycho / pharmaceutical industries, that adverse reactions to antidepressants are NOT cured with antipsychotics, as the mainstream psychiatric and medical communities believe. And know millions have been similarly maltreated. I don’t know if that’s what happened to you personally.

        But agree with madmom that we need to spread the word that psychiatric drugs do not work for all people. And we aren’t mentally ill for believing drugs that are now known to cause extreme weight gain, diabetes, heart problems, growth of breasts in little boys, and atrophy of the brain are not beneficial to all people.

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    • Mary Anne, you bring up a really key point. I mainly mentioned the Hell and isolation of tapering. But for many people there are prolonged after effects that last months and sometimes years after tapering off the drugs. Tardive dyskinesia is a classic example in which one develops permanent neurological tics, tremors and sometimes wild uncontrollable gesticulations that can be a permanent response to long term antipsychotic use. But there is wide spectrum of other symptoms such as light sensitivity, ongoing anxiety, autoimmune illness like symptoms, memory and cognitive impairment, and on and on.

      I don’t want to scare people because I truly believe that there is an enormous capacity for self-healing in the human body if given enough time, care and nourishment. But these potential effects should not be sugar coated.

      People who go through tapering and the after effects are extremely brave people. And they often go unacknowledged by wider society. Thanks for your words.

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      • And since I dealt with unethical people within the psychiatric community, and have the medical evidence of such, Jonathan, I feel I get unacknowledged sometimes, even on this website by medical “professionals.” The larger problem truly is the mainstream medical community having to come to grips with the reality that they’re “treatments” are not beneficial, and this has been known by some in charge for decades. And most the decent people who went into the helping industries were deluded by the “elites,” currently in charge, or so it seems.

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  10. If our system, the FDA and our government was protecting us, pharmaceutical companies would be required to fully test their drugs for the time periods that people actually use them (years and years). These companies would be required to research and post warnings about the effects of their drugs on pregnant women and their developing babies. Finally, pharmaceutical companies would be required to study each drug’s withdrawal process and share it with potential recipients before these individuals started using any meds.

    Then, we would have informed consent. My concern is that we don’t have anything close to this when it comes to many psychiatric treatments in our country.

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  11. Sometimes I still beat myself up thinking “how could I have been so stupid to have let myself get so sick?”

    1. Nothing in my life taught me not to trust the “medical” profession.

    2. I thought it was safe proven science, my serotonin was low… I had the “illness”.

    3. The internet was still young and I never saw pages critical of psychiatry.

    4. I was young and ‘invincible’ .

    5. Some of those pills make you a bit high , Dexedrine for ADHD , Benzos .

    6. Intoxication Anosognosia http://www.ectresources.org/ECTscience/Breggin_2006__intoxication_anosognosia.pdf

    7. Unbearable withdrawals, you can’t exactly just say I am just not taking Remeron, Klonopin, Dexadrine and Zyprexa anymore through it all in the trash and go on with your day.

    It sucks.

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    • Yes, it does suck. As a rule, it’s a mistake to distrust authority in scientific matters that one doesn’t have training in, but it’s clear now that the pharmaceutical companies aren’t scientific authorities and most of our information and understanding of psyche drugs comes from their marketing companies.

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    • I’d add:
      8. Pressure to get through the day because you simply can’t afford taking time off and working things out, taking a holiday etc. Pill seems like an easy fix.

      As to 5. – they totally make you high. The first time I got a benzo my thought was: “oh boy, I should never take that again or I’m in a world of trouble”. It felt real good… I am getting muscle relaxants (no benos – I’ve read Valium is also used for that purpose) right now for my back pain and I’m trying to take the lowest dose and only until I can get a physiotherapy appointment – they also produce the same high. That is true also for some migraine medications. One should be really, really careful with taking meds that make you feel good, especially over a longer time periods.

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  12. Hi Jonathan, Thank you for this interesting article, which I saw through Monica Cassani’s blog. I have also blogged on it for our person-centred therapy service (in Exeter, Devon, UK). Here’s the link:-

    http://palacegatecounsellingservice.wordpress.com/2014/04/19/jonathan-keyes-invisible-pain-recovery-from-psychiatric-drugs/

    We would be interested to keep up with what you are doing/writing (part of the point of our blog is to make connections with others who bring some similar perceptions/values to their work).

    Lindsey Talbott
    Palace Gate Counselling Service

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  13. So… These wristbands you are speaking of… do they exist? Can we have them made? I can help with the legwork and possibly donate to the cause. I think they are a great idea and we need to raise awareness any way we can!

    I have been suffering longer than I even know. I had NO CLUE the effects that psych drugs (mainly the benzos I have been prescribed for 7 years) would have on me, until my last dr CT’d me in December ’13 and I ended up in a psychotic state and in the hospital 3 weeks later. I am sure that I was in tolerance w/d for who knows how long before the acute w/d following CT. (Not to forget protracted w/d and interdose w/d.) Am i missing any? How many types of WITHDRAWAL can one drug cause!!! I reinstated in January this year and have tapered down from 2 mg clonazepam and I just made my second cut down to 1.75 mg a few days ago. I hold for at least a month. I still cannot find a dr that is willing to endure the long process of coming off this poison. They all tell me that it should only take a month or two and I need to find an inpatent rehab to detox. But no matter what I tell them or research I try to show them, I have been rejected. One dr (neurologist) actually told me it would be unethical for him to treat me unless I wanted to cooperate with HIS timeline of tapering, which comes from “clinical studies”.. and that my slow taper is too slow.

    Besides having to endure the pain and suffering w/d from psych meds cause, the stress and overall lack of support with family, friends, the community and especially dr’s, is beyond time consuming and heart-breaking. Were it not for my online support FAMILY, I do not know what I would do, or where I would be right now.

    I thank you, and Beyond Meds.. and of course my BPM family.. for helping to guide us through this process, bringing hope and light to a very dark time for so many people. I cannot wait for the day to be free from this, and since I have just begun, I still have a long journey ahead. It’s daunting to think about, so day by day… sometimes minute by minute… is all I can think about.

    I have just recently started my own blog, http://mysoulthroughawindow.wordpress.com, to try and cope with this process and hopefully help others. I am obviously no where near an knowledgeable as many of the blogs I read, and I do not like feeling redundant.. but at this point, repetition and simply getting the information out there is key. Not only to my healing but for thousands of others.

    OK.. I will be on my way now. Feel free to check out my blog 🙂 and THANK YOU again, for the continuing knowledge and support. AND please, let me know about those wristbands!

    Lyndsay

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    • No, the wrist bands don’t exist…at least not yet. I have heard from one person who is interested in making them. They were just a thought experiment born out of frustration and empathy for some of the people I work with. But we do indeed need to raise awareness.

      Usually the party line is…yes yes…we know these side effects and tapering problems exist for some people…but really the benefit is worth so much more than the cost. Really? Perhaps in sone cases but for hundreds of thousands of others?n That argument has to be fought vociferously. And one way to do that is to stand up and say “I was harmed”, or say “My loved one was harmed.”

      The focus on fast tapers by docs, while working for a select group of people, can cause severe neurological problems for many others. It sounds like you have been through your share of docs who have that specific agenda. This is why so many people have been led to these on line communities…due to the ignorance by doctors of the lived experience of tapering.

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      • I think the wrist band type actions would be great.

        It is a simple idea that could be repeated at lots of places: conferences, hospitals, pharmacies, politicians offices….

        I’d really like to read about this sort of action on this site, or elsewhere.

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    • Thanks for writing the blog. Testimonies from people who have gone through this experience are essential for change to happen. If reading your blog deters one person from going down the same path with drugs or helps one person to get off them it’s already worth it.

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  14. I can’t say enough about http://www.survivingantidepressants.org for tapering support and guidance.

    I go there and link people to the information there all the time when they need help with tapering off of one of the many prescribed psych drugs.

    The admin (Alto Strata) of the site is very knowledgeable and helpful and with a simple search, you can find very detailed tapering instructions and important information on just about any prescribed psychiatric drug out there (i.e. can the pills be split? What size doses to the come in? Is the drug available in liquid for tapering? Is it water soluble for a titration? etc).

    All of the work is already done for you in regards to research and posted in one central location for you to use as an aid to coming off of these drugs appropriately. It’s a forum, so others in the same boat also post about their experiences and tricks they’ve learned along the way to make tapering easier, etc.

    Lastly, this was a really great entry on MIA and I appreciated everything the author had to say. It’s all true! The bracelets are a great idea! I’d buy one and some for all my family/friends as well. Thank you!

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  15. The peculiar case of the Russian doctor

    Although I do psychotherapy this person is a friend and not a client. She was given Prozac for depression in a rather casual way for depression. I am not sure how long she took it at that time. A couple of years later she was given it again for the same reason. When I met her she had decided to quit after about four months. About 6 weeks later she had a frightening psychotic episode. At the time she was 39. In the years that followed she was sometimes on and sometimes not on drugs. She went almost two years without them and then had another psychotic episode. Now for quite some time she has been taking a moderate to low dose of Seroquel at night and a moderate or low dose of lithium in the day. Any divergence from this and she goes into pretty bad episodes. Her hands shake some.

    This might be okay as a solution if the drugs were without side effects and eventual dangers. But they are not. She does Yoga and Shamanism. Inner sound. Etc.

    Fortunately her psychiatrist wants to get her off the drugs and spends quite a bit of time with her when they meet.

    Withdrawal symptoms? Maybe but so violent she has been hospitalized numerous times and by now knows many psychiatrists in the region. At least a dozen. She is doing fine now and seems normal. She might easily have been a beautiful Russian film star; she has incredible vitality. Her memory is unimpaired. She is very manually dextrous. Etc.

    Her one weakness is that she shies away from much processing. When her life goes off, like a relationship breaks down, she often runs to my place for a while. Usually after a spell in a hospital. Otherwise, she is too wild and destructive to have around.

    Perhaps someone will have an intuition about her. I have exhausted mine. It superficially looks like the Prozac started it; but there must have been some underlying elements. She tells me she does not realize it when she becomes manic. I believe her. And she expands rapidly. She thinks there is a trauma in her very early life. But can not recall it. Thanks

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    • Interesting Agni. I personally think that most emotional distress comes from a complex mixture of previous trauma, stress, socio-economic pressures, underlying family of origin dynamics, innate susceptibility to anxiety, melancholy, altered states, etc. But when people go to a doctor, these complex narratives are boiled down to a simplistic diagnosis and prescription that can easily lead to a cycle of worsening symptoms and increasing drug prescriptions.

      At that point it’s like the chicken or the egg. It’s hard to tease out the original emotional distress from the iatrogenic damage that is being done. Hope your friend finds some peace.

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    • Shying away from processing combined with the psychiatric brain-altering approach is a very bad combination. Perhaps you can encourage her to ask if her current approach is working for her. Perhaps you can ask what makes her resistant to processing? Usually, people make progress by processing their experience in some way or another. Doesn’t have to be therapy per se, but telling one’s story and re-creating the narrative in a more self-enhancing way seems to be central to most people’s recovery. If she won’t do that, she may be condemned to the drug-and-pray approach.

      Prozac does cause psychosis in a small number of cases, BTW.

      —- Steve

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      • Prozac can also cause/enhance anxiety, it happened to me. It actually helped me to get rid of chronic fatigue syndrome-like symptoms and I took it for just a month (I didn’t want to risk more side effects) but everyday on it I woke up scared to death and was shaky and anxious all day long. Long-term use of pretty much any psych drug does more harm than good.

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  18. Wow Jonathan, thanks for writing this. I haven’t been on meds for 6 years now and fortunately I did not experience the nightmare withdrawals I have heard about and what I have read here today. As a kid my first medication was being restrained, then I was put on Prozac in my late 20’s which quickly escalated to Seroquel, Trazodone, Geoadon, Rozerem and Concerta. I was a walking zombie, I took the Seroquel after 6pm I could not get up in the morning to go to work. I was constantly arguing with my supervisor about being late until one day he gave me the ultimatum to quit or be fired. Of course I quilt. These drugs do kill and maime make no mistake about it, it seems they were designed to do just that. I was able to get off these medications after a week long retreat at Stone House in Mebane NC http://www.stonecircles.org/. I spent a week there meditation, doing yoga and having body work done. It was my first time receiving a massage. Along with that massage I had a special treatment done called Cranial Sacral, it was performed on the base of my skull. When I woke up the next morning the swelling in my brain had disappeared along with the fogginess and dizziness. It was an absolutely amazing feeling to have that experience. Today I maintain my wellness with talk therapy, yoga, meditation, acupuncture and massage therapy and a day of silence (Monday’s). I know not everyone can be as fortunate and I am grateful that I did not experience the terrible side effects of my tapering after I cam back from my retreat. It’s not easy at times as I still feel suicidal, depressed and people find my personality difficult to handle most times. But I would rather feel it all than be a zombie.

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  19. Well, on antidepressants as a whole:
    http://www.nimh.nih.gov/about/director/2011/antidepressants-a-complicated-picture.shtml
    “How do antidepressants compare to placebos?
    In general, the efficacy of a drug is defined by how it differs from placebo. More than two dozen antidepressants have been approved by the Food and Drug Administration (FDA) based on trials in which the drug is better than placebo. Sometimes the differences are small. Sometimes only positive results have been selected for submission to FDA. And sometimes the placebo effects are profound. For reasons that are not entirely clear, placebo effects have increased markedly over the past two decades in trials of psychiatric medications.
    Mild depression tends to improve on placebo so that the difference between antidepressant use and placebo effect is very small, or at times, absent. In more severe forms of depression, antidepressants show greater efficacy. It is important to note that these clinical studies have primarily focused on reducing the symptoms of depression and not on a broader range of potential outcomes (such as changes in everyday functions, cognitive abilities, quality of life, etc.). In addition, because clinical trials are conducted in a controlled environment, they do not necessarily reflect the way actual clinical practice operates. And even under research conditions, clinical trials for antidepressants use rating scales that may be weak or imprecise indicators of efficacy.”
    Even NIMH goes all “we don’t really know and the science is mixed at best and maybe one should be careful” on that. And they of course don’t even mention side effects.

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    • I will never, ever take another so-called anti-depressant no matter how difficult my life may get! My time on these drugs led to lost relationships and being totally out of touch with my feelings and emotions. My world tumbled down around me as my life spun out of balance and I didn’t give a damn because these damned drugs numbed me to everything.

      The numbing eventually led me to walking out into traffic as I would be walking down the sidewalk. I’d just choose, all of a sudden, to walk into the street, just to see if I was lucky that day or not. I didn’t think about or care about the fact that I was endangering countless other innocent people along with myself. I just didn’t care because I was so numbed. These toxic drugs are insidious!

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      • Yes I was the same on venlafaxine Stephen. Took an overdose of the pills without thinking. Very scary. I had to be watchful after this so as not to act on impulse. Difficult for me as I’m an impulsive person naturally.

        I had to get off all the drugs to be free. Which I did. Then got 3 fractures on the fibula when walking down a stair, Mar05, now finding out that venlafaxine causes bone loss on max doses in older people, I was in my 50’s. Now my 6in metal plate in leg and scar reminds me of my narrow escape.

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