Eternal Sorrow: My Unexpected Descent into the Mental Health System

Darius Ghanat
29
3557

I didn’t get into the mental health system the way that most psychiatric survivors do. However, once I was in, I ended up injured and disabled because of it. I have Tourette Syndrome (TS), a neurological disorder that causes involuntary movements and sounds called “tics.” In 2010, at the age of 17, when my tics suddenly became debilitating, my family started taking me to one specialist after another. No one could explain the cause for the increase in the severity of my tics. We contacted the Tourette Association of America and they gave us a list of recommended physicians to seek treatment. The neurologist who treated me was considered the top in her field and a prestigious movement disorder researcher, so after months of waiting and suffering, we thought I was finally going to get the help I needed.

At my first appointment, the neurologist prescribed Abilify off-label to help manage my tics. My family and I were new to the “medication world” and so we trusted her knowledge. It was never explained to us that Abilify was an antipsychotic, nor would we have expected one to be prescribed to treat tics. We could have never imagined that a doctor was about to give me mind-altering drugs as potent as hallucinogenic street drugs, and that something this outrageous is completely legal! We were never properly informed of the risks involved or the fact that the drugs were so addictive I could have been stuck taking them for the rest of my life.

Needless to say, this drug therapy went terribly wrong. I quickly began to experience horrific side effects that became so severe I was not able to leave my house. By the second week of taking Abilify, I had all the typical side effects of an antipsychotic and then some. I was shocked by how quickly it completely deteriorated my health. I was walking around in a drug haze looking like a zombie. I started to experience extreme restlessness, not realizing I was already in the early stages of akathisia. I lost my ability to experience any pleasure from the activities I normally enjoyed. I now realize that I was also in the early stages of tardive dyskinesia, as I had developed tremors and hyperkinetic movements. Even after reporting these movements to the doctor, she did not pick up on the fact that I was developing tardive dyskinesia.

Almost every night, I had a nightmare that was so horrifying I could have never imagined it was even humanly possible to have a dream this intense. Every waking hour, I was forced to constantly think about my breathing. It felt as if my lungs were no longer automatic and had become “manual.” I lost my ability to communicate so those around me were unaware of this drug-induced hell that was unfolding.

From an outside perspective, my parents were under the illusion that my tics were being suppressed, when in reality, I was simply suffering in silence with the majority of my side effects. Though my parents knew that the medication was not improving my quality of life, they could have never imagined how damaging the side effects truly were!

The doctor’s treatment literally made me so ill that I was unable to come to her for my appointments anymore, so she agreed to treat me via email. The doctor regularly told me to tough out debilitating side effects and when we told her that it was too much to bear, her only solution was to add more medication, which included the SSRI Zoloft. Once adding the SSRI, it was still nowhere near enough to counter the side effects of the antipsychotic, and it further complicated my situation by adding on even more agonizing side effects of its own. Every afternoon my anxiety was so intense that my teeth were constantly chattering and all I could do was sit on the floor and shiver convulsively. The doctor then suggested that I raise the dose of the SSRI even higher, but my parents and I thought this was a terrible idea since I was experiencing excruciating headaches that felt as if my head was going to crack open.

After over a year of living this way, my parents and I decided that I should get off all medication. We discussed this with the doctor, and since I was homebound because of the medication and my quality of life was actually worse, she agreed. The only guidance the doctor gave us about the “withdrawal process” was that we needed to “do it slowly,” and that “it might be a little bumpy.”

To be honest, nothing could have prepared my parents and me for the hell we were forced to live in for the next six months. The first month of withdrawal, I was basically in a comatose state. I would sit on the floor in the same position, unresponsive to anything for hours. My mind had become a black void, completely empty of thoughts, and I lost my ability to think. It was as if my life had stopped and I was living in a constant “nothingness.” During the times that my thoughts did return, I was suicidally depressed. All I could do was sit on the floor and constantly think about what a worthless person the drugs forced me to think I was. I developed extremely distorted body image issues and self disgust, where simply looking in the mirror would set off my symptoms.

As time went on and I had less and less drugs in my system, the suicidal ideation increased. My mom recognized that I was going through the DT’s (delirium tremens). I would sit on the floor in agony because I thought I had thousands of bugs crawling all over my body and burrowing into my skin. I would scratch my skin until it was irritated and sometimes bloody in an attempt to stop the sensations. Eventually, I also became homicidal and extremely violent. For our safety, my parents had to remove all sharp objects from our home, which included all forks, knives, and scissors. I needed to be monitored 24/7.

Because of the lack of resources, my parents were forced to close down their business so that they could be with me. I had such severe personality changes that I became completely unrecognizable to my parents. At that point, when my mom looked into my eyes she saw a complete stranger. I would suddenly go from total calmness into maniacal rages where I would scream at the top of my lungs for hours. During these rages I would throw things and hurt myself, which included ripping my hair out and forcibly banging my head on walls and windows.

I had become so paranoid, I was afraid to leave the house. I thought that if anyone saw me they would kill me because the drug made me think I was so ugly. My parents were constantly on edge because they never knew exactly what would set me off. When my parents reached out to the medical community for help, they were told to put me in a mental hospital, where I would be further medicated. This made absolutely no sense to my parents because I was trying to get off the medication, and it was the very reason why I was this way to begin with. So they decided we would “tough it out” as a family and hoped that it would pass quickly.

Sadly, that wasn’t in our favor as my withdrawal duration lasted almost six months! At the peak of the withdrawals, one of my worst rage episodes took place on Christmas Eve. It lasted for well over 36 hours and I was near death from complete dehydration and exhaustion. My body was in constant motion during this period and I was not able to sleep, eat, or even have a sip of water! As my caregivers, my parents were also put into the same dire situation. I was screaming in anguish, despair and hopelessness with an incredibly strong urge to kill myself and others. I was totally overcome with a feeling that words cannot describe. I felt as if I was experiencing torment so insane I didn’t know what to do with myself and that there was nowhere to escape the madness. I was hysterical, paranoid, and delusional. The drugs forced me to have an intense hatred toward humanity, but in particular, toward all those who had bullied me in school years earlier, reminiscent of the Columbine tragedy.

Once my family and I got through the horror of withdrawals, my parents really thought I was through the worst of it all and would start getting better. As time went on, we came to realize that the medications had permanently damaged my mind and body. Going into the treatment, the doctor had put us under the impression that there were really no side effects to be concerned about at all. She told us everything we wanted to hear by portraying the drugs as some type of miracle, giving us a false hope that I would get my life back. Since withdrawal, I now live with so many new illnesses that I never had before taking medication. Some of these include: breathing problems, akathisia, tardive dyskinesia, OCD, psychosis, sleep and speech disorders, and acid reflux. Also, my original Tourette Syndrome has progressed to become so bizarre and complex.

Even after I was off the medication, the doctor assured us that all the side effects would eventually go away after two years. We would later discover (when it was too late) that this was simply not true and was, perhaps, some made-up time frame given to her by the pharmaceutical industry.

I now spend my days isolated and pacing, unable to sit on furniture or sleep in a bed. I eat standing up and sleep on the floor without the luxury of a pillow or a blanket. My drug-induced symptoms force me to live this way.

Whenever we try to seek new help for me, doctors throw their hands up and say there is nothing they can do and they refer me on. I have tried a wide variety of treatments, including alternative and natural medicine. It’s hard to counter the damage of medication once it’s been done. So many doctors will not even take me on as a new patient because they already know from my initial information provided that they will be unable to help me. Often when I try to explain my new symptoms to the doctors, I completely lose them in the process.

I had my whole life ahead of me, but now I have become disabled and homebound. Because I was in the top 10% in the country for my high school standardized testing, I had been awarded a prestigious scholarship to attend a four-year college tuition-free. Due to the medication side effects, I became too disabled to take the classes, so I was forced to take a medical leave of absence and ended up completely losing the scholarship. As it stands now, I live with my parents under their complete care. I may never be able to live on my own, to work or have a career, or the chance to have a relationship. It has been four years since I have taken my last pill, and I am still experiencing disabling side effects from the medications.

In searching for answers as to what went wrong with my treatment, my family and I discovered that there is already much scientific evidence demonstrating the dangers of these medications and why they should not be used to treat illnesses such as TS. Antipsychotics are known to cause tic disorders, referred to as “Tardive Tourettism.” As tardive dyskinesia becomes more recognized as a side effect of antipsychotics, it needs to be understood that symptoms of Tourette Syndrome are part of tardive dyskinesia when they’re caused by medication. The fact that doctors, including my own, actually believe these medications can help TS patients further emphasizes how uninformed they are about tardive dyskinesia.

Ever since this happened to me, my family and I have been speaking out to prevent these kinds of tragedies from continuing to happen. We were horrified to discover that Abilify’s drug manufacturer, Otsuka, was seeking FDA approval of Abilify for children with TS. We started our advocacy work by writing a 16-page letter to the FDA to tell my story and also outline all the reasons why the drug should not have been approved. We have since learned that working with the FDA is ineffective, so we have changed direction and are now focusing on educating doctors and the public about the dangers of antipsychotics. Due to the power of the drug companies, it has been so difficult to get my story heard. We hear stories from so many families within the TS community whose children experience very similar symptoms as my own, yet the parents and doctors fail to recognize that these are side effects from the medication.

To tell my story through music, I wrote a cello concerto entitled “The Eternal Sorrow” (embedded below). It is written in honor of all those injured by psychiatry and psychiatric medication — not only those whose lives were lost, but also those who are living and continue to suffer from the harm done. The title of the song refers to the permanent damage that psychiatric medications can cause to disable people for the rest of their lives. Through the song, it is my goal to raise awareness about the serious risks associated with psychiatric medications, and use it as a tool to connect with others in the psychiatric survivor community. In the background of the song, the swelling of the strings in waves are reminiscent of the torment I experience on a daily basis. My symptoms hit me like a ton of bricks and then die down only to give me a false sense of security because they will be coming right back again with a vengeance.

My story further emphasizes the dangers and futility of psychiatric medication. As in my case, it was used to treat a physical illness instead of the typical mental health uses. In an attempt to try to “fix” my brain, they ended up destroying it. As psychiatric survivors are well aware, these medications do not heal, and at best, simply suppress symptoms.

The medication was given to me outside of the realm of psychiatry since it was prescribed by a neurologist. Psychiatry is not only injuring patients in the system, but it is injuring patients who should not even be in the system to begin with. Every single drug the neurologist prescribed to me was psychiatric; she never even prescribed any neurological ones. Because of this, I feel that my treatment was nothing more than the ills of psychiatry disguised as neurology.

Please note: If anyone is making a documentary about the dangers of psychiatric drugs, I am willing to donate my song to the film’s soundtrack.

Previous articleRadical Disabled Americans Bringing Direct Action to Your Town
Next articleA Disorder for Everyone!
Darius Ghanat
Darius Ghanat is an iatrogenic illness survivor who lives in South Carolina with his parents. Though he is unable to work, he finds solace in writing music when his health permits. Darius uses his music to raise awareness and funds for mental health, Tourette Syndrome (TS) and other charities close to his heart. He and his family devote their lives advocating for psychiatric survivors and better treatments for TS.

29 COMMENTS

  1. Thanks for sharing your story and your artistic gifts, Darius, I love the cello concerto. It’s ominous and filled with a profound sense of doom, which is descriptive of the eternal sorrow that those of us who know of psychiatry’s ongoing crimes against humanity have, especially given their attacks on so many children.

    My withdrawal from the neuroleptics and antidepressants wasn’t as bad as yours, but you are definitely right, withdrawal symptoms from these drug classes is bad, mimics the symptoms of the DSM disorders, and does last much longer than the DSM states. And the doctors are completely ignorant and/or delusional as to how truly dangerous and worthless these drug classes are, especially to those who were not psychotic when initially put on them. Although the medical doctors should not be ignorant, since they all theoretically learned in med school that combining the antidepressants and/or antipsychotics makes people “mad as a hatter” and “psychotic,” via anticholinergic toxidrome.

    https://en.wikipedia.org/wiki/Toxidrome

    It is a shame today’s mainstream medical community bought into psychiatry’s scientifically invalid DSM theology, no doubt to cover up their inability to actually heal people, due to their desire to create and manage illnesses for profit instead. As the third leading killer of Americans, today’s medical community is definitely overrated, since being a hypocritical and unrepentant murderer and/or torturer does not actually qualify one as a respectable member of a civilized society, which of course we no longer have, in part thanks to today’s medical community.

    I would like to commend your parents, you are very fortunate to have parents who are so loving and insightful as to see through the doctors’ lies, and recognize the iatrogenic harm for what it is.

  2. Regarding the drugs/meds, you will get better , in the same way as a weightlifter gets better when lifting weights. Through repetition you will become better.

    I say this as I , at age 19, was forced/given powerful antipsychotic drugs for several years (off and on) and today at 49 am doing okay. I have the gift of sight , the ability to hear, the ability to walk and talk.

    If you keep looking at the negative, the negative will be apparent , so look for the good things. Similarly to the advice of when you drive, look at the road you want to take, not the tree on the side of the road you fear you will hit.

    Or looking for the problem , can make the problem happen.
    The character Neo knocks over the vase. https://qph.ec.quoracdn.net/main-qimg-8254c23366b3a6827beb96a1f19f9368

    Looking for the solution , can make the solution happen. http://www.nbcnews.com/id/9576387/ns/health-health_care/t/two-australians-win-nobel-prize-medicine/#.WNEZcme1t0g

  3. hi, darius. thank you for telling your story, and sharing your beautiful, haunting music.

    in my family, we too have been nearly destroyed by psychiatry/big pharma. we also felt, to varying degrees, “disabled and homebound”. i am advising you to not think of yourself that way. it will only hold you back.

    the best tools we have discovered on our journey back to life:

    1- when you want to say ” i can’t” do something, replace it with the words “i choose not to”. you will see you have the power to chart your course, that the strength is inside of you. start with something small. oh yes, i can go to the grocery store. or wherever.

    2- instead of fighting the terrible, obsessive thoughts in your head, the dysphoria…accept the knowledge that you can never be certain about anything and that you can live a full life with uncertainly and the discomfort it brings.

    my family was in a horrific, dark spot ( a good ten years of tons of psychotropic drugs and the devastating fallout from them all) and now we are living again. i am here to say you can reclaim your life. i know you can. i’ve seen the worst, and i see the light. and anyone can achieve it.

    sending blessings and strength. all the best,

    -erin

  4. Hi,

    Your story is a familiar one to me. I was given antipsychotics and antidepressants in an inpatient psych hospital to treat what I now have come to believe was genuinely ordinary teenage angst. I was given so many drugs off-label, and when I refused to keep taking them I was told that I was “being noncompliant.” One of my theraposts even said “I don’t think you’re fully involving yourself in your treatment, nor do I think you totally want to get better because you refuse to be on a medication.” She also had Prozac pens and Abilify mouse pads, so my guess is that she gets sponsored or otherwise compensated for pushing these drugs on unaware children. I’m sorry you have to go through this.

    I also empathize with you on the recurrent side effects, even years after stopping. I haven’t touched a pill in well over a year, and yet I still find myself lost in the “brain fog” and dissociating, numbing effects of having been on these blasted poisons for two years prior to that. I hope, for both of us, that some day in the future will find us in better health, free from the grips of these chemicals.

    Best wishes,

    Blaine

  5. Hi Darius. What a tragic waste! Of course you’re not the only one. I guess that means things are even worse; but it also means you’re not alone. There are a lot of us out there who have experienced similar stuff to what you have.

    I’m a poet. If you ever want lyrics written for your compositions, my email is lulivingnichols at gmail dot com. I live in the middle of nowhere in rural Indiana, but I skype.

    At least you are still able to function well enough sometimes to write stuff like this article and compose music.

    I’m struggling with my own withdrawals after 25 years of “med compliance” or mindless drug abuse. Unfortunately I have to conceal them from those around me who still drink the psychiatric kool-aid.

  6. Hi Darius

    Another person dealing with ID, here.

    Nevermind the advice that is offered if it doesn’t feel right.

    I got sick of the ‘be positive’ crap long long ago.

    Sometimes you just roll with it–and then there are days when you can do stuff like compose music, right? Thanks for including it here and for telling your story. It’s a crime that just keeps being repeated ad infinitum.

    Maybe someday our collective suffering (not just us who have been damaged by psychiatry and/or psych meds, but the disenfranchised everywhere) will be in a place to rise up and throw the chains off before we kill ourselves and every other living being on this precious, irreplaceable planet.

  7. Re “At my first appointment, the neurologist prescribed Abilify off-label to help manage my tics.”

    I survived years of psych med hell, I guess the Xanax and Amphetamines were “fun” for a wile till the decent all the way to what happens when a reckless quack SSRIs and the most diabolical chemicals every created “olanzapine” or Zyprexa to the mix anhedonia or trip to withdrawal hell. Psych survivor been to hell was in it for years so back to Re Abilify.

    At the very end of my story, the last treatment for “my” addiction they created I am shuffled off to the doctor and mentioned it was difficult to sit still in group for an hour, I described Akathisia. I already learned about how psychiatry really works by reading Anatomy of an Epidemic ( finding ‘anti psych’ saved my life) or was starting to but this nurse practitioner playing doctor did not know I read stuff like that and I was playing dumb.

    After I complained of Akathisia without using the word she offers me Abilify #1 ‘side’ effect is Akathisia !!!!

    So then I ask this total incompetent if she thinks I have a chemical imbalance, yes she says. Now I am playing with this mental midget, can I get a test for this Chemical imbalance ? They are very expensive. I have great insurance how expensive ??

    Then I stopped playing dumb and called her out on the test and don’t remember the rest but I was not very nice I don’t want your Zoloft and Abilify you rubber stamp on everyone you people are the ones that made me sick in the first place.

    Great job getting your story on MIA, parents patients doctors nurses councelors everfyone need to read this and recognize whats going on.

    I can do it, I can usually recognize treatment induced “mental illness” from the ‘real thing’ talking to someone for 10 minutes about their history, but these “professionals” !!!

    Edit, more.

    The question you ask people in the middle of the psych med nightmare is “What were you like BEFORE you went to all these doctors?”

    Thats the only way I know to wake them up when I meet them around the addiction recovery scene.

    “medication spellbinding” snap out of it.

  8. Any of us that are socially marginalized, and especially if we are not going the disability label or recovery route, we are at great risk for falling into the mental health system.

    Your best defenses are:

    1. Say nothing
    2. Threaten lawsuits
    3. Fight like your life depends up on it, because it does, and get the hell out of there.

    What we really need is an anti-mental health, anti-recovery forum, so that we can organize and take actions. Please Join:
    http://freedomtoexpress.freeforums.org/index.php

    Nomadic

  9. Tourette’s, huh? I don’t know much about it, but you say it’s a neurological thing. OK. I wonder if that explains the typical, if severe effects you had from the psych drugs? And please don’t condemn yourself with this “rest of my(your)life” stuff. Daily walks, and some Yoga and Tai Chi will help. If there aren’t good classes/teachers near you, you can start with books and online videos. Once you start working with your body, AND your mind/brain, you will be surprised how much control you can develop. Welcome to the world of Iatrogenic Neurolepsis! Once, I actually got a nurse to write that into my medical record, before she realized what she was doing! Otsuka Pharma, makers of Abilify, is in the process of marketing pills with short-range RFID chips in them, to “ensure compliance”. (God, I *wish* I was making that up!) And, yes, they pay shrinks BIG$$$ for all kinds of spurious reasons. “ProPublica” has several excellent articles, and a database of PhRMA payments to doctors. Otsuka paid a local shrink $10,000. in 2 years, as a “consultant”. Yes, they BRIBE doctors, and it’s legal….. Best wishes, Darius! ~B./

      • Yeah, they can’t be very complicated. Probably easy to shield. And, my understanding is they are VERY low power, and are only designed to transmit as far as a wearable device. Still, if that’s what they’re doing NOW, what will they be doing in 10, 20, 30,etc., years….????…. THAT is when things *MIGHT* get *SCARY*!….
        Funny, isn’t it? With $BILLIONS$ in profits, we still don’t have a good health care system for poor and disabled folks. But we can put RFID chips in pills, by golly!….
        Good 2 C U, 2, “FeelinDiscouraged”! Happy Friday! ~B./

  10. Hi Darius,

    Thanks so much for sharing your story, very inspiring. Truly believe we need to speak up. I am wondering if you could help with my initiative here –

    I am developing a storytelling and mental health platform with the ultimate aim of curating a museum exhibition. Soul relics Museum is a platform for people to read and tell stories of mental health through objects that help them connect or express to a present or past experience they have had with their mental health. The object can be anything personal to something in the system. It’s a unique and creative idea to help people come forward and share with others what mental health problems have been like for them and a safe and constructive way to read of others experiences while being brave enough to share your own. Together, we can create a collective voice in raising awareness and education on mental health!

    All you need to do to help is to take a look (http://soulrelicsmuseum.me ) and write a short personal story (http://soulrelicsmuseum.me/Contribute.html)!

    If you agree with the initiative, I would be super grateful if you could help me promote it (eg. share on social media and contribute to the discussion) as me as an individual can only do so little in unifying people’s voices.
    Let me know if you have any thoughts!

    With Solidarity,
    Van

  11. Darius, Your music is beautiful! I would love to incorporate it, with your permission, into my live presentation I do called Behind Locked Doors. I, too, was a music composer prior to my entering the System. I wrote frequently for cello, simply because at the peak of my composing years I was surrounded by many wonderful cello players. I would love to hear more of your music.

    As I read your piece all I could think was that this is so cut and dry, so clear what the damages are, and so clear what the cause was that you could sue and win if you could get a attorney. Lawyers often refuse cases if they are too complex since they hate paperwork. Or they refuse if they can’t pinpoint damages in dollars and cents. But the timeframe is relatively short, the damages obvious, your parents also lost a lot, you gave up your college education, you were clearly headed for success and this doctor prescribed totally inappropriately and didn’t pay attention when you reported difficulty. Is this not gross malpractice?

    Why on earth do these professionals just wash their hands clean like that? What are we? Dirt to cast aside? Nothing? Filth? Things? Have they no regard for the humanity they serve?

  12. Darius, I never write a comment on any site but this time I couldn’t stop myself. I love this beautiful piece of music. There are no words yet this music speaks so clearly and profoundly. Thank you for sharing your story and for sharing this moving and exquisite piece of music. I am very sorry for the pain you have had to endure. You are an artist. I hope creating your music can somehow bring you as much healing as I sense from listening. There is so much pain and then there is this beauty. It blows my mind. I wish you well.

  13. I have a blog for you to check out Darius. http://Www.beyondmeds.wordpress.com. The blogger, Monica, was so sick she was bed fast for at least two years, though she had insomnia from her chronic pain. Today she is significantly better. I believe she is actually working now–from home of course. Monica says her mind has never been clearer though physically she still has problems.

    Just because you feel rotten now doesn’t mean you always will. Our bodies and brains are designed to be wonderfully resilient. It’s hard to be patient though. Especially through suffering. 🙁

  14. You have told my story. I get why all the suggestions in the comments don’t work. I have been trying them all and my symptoms are getting worse. I am a victim of torture. They may have tried to stop the torture of terrorists but they have not cared about the pain I feel every day and night. At 65 I am not optimistic about the possibility of improvement. I am dependent on colonics now. I cannot eat or digest food. I cannot sit at all! I cannot even get a doctor to diagnose me! They are all complicit in this! So is the rest of society who cannot face the reality of this growing nightmare. The latest victims are the children with behavioural issues and their desperate parents who still believe that medication is the answer. Now Canada want to implement Pharmacare and they don’t know how crooked the industry is! We need to band together somehow so that my life and my suffering is not in vain.

  15. Hi, I have read that mannitol has been shown to be effective in reversing Parkinson’s. I don’t know if it has been tried for TD but in my opinion you won’t know till you try. There was a study in the UK and the results looked hopeful. I have seen anecdotal evidence on forums, folks stating they had Parkinson’s and the mannitol reversed it and they were no longer shaking.

    My naturopath does not recommend it but I tried anyway and found it useful. Anyone who tries it should be aware that you need to use it cautiously. Too much will get you running to the bathroom. My guess is that the amount that’s “too much” varies from person to person. I was lucky and could tolerate it just fine.

    On the whole, common sense trumps Western Medicine by far. Using it is a skill that improves the more you learn to trust yourself first and foremost.