I Can Barely Breathe – Mad In America

I tried to kill myself, desperate to escape the pain in February, 1984, at age 17. I survived. I was punished for the attempt, for the rest of my life…

You see, I had just been to see my first psychiatrist. Out of worry, my mother had called my high school to get Dr. Grahm’s name. For a year, I had had no friends, my GPA had dropped, I had stopped showering regularly, and was secretly binge eating. I was miserable but had no clue as to what I was experiencing. Back then, people did not talk about mental illness. Also, in my family, “emotions” were not allowed to be expressed. We were to act “pleasant, with pleasant looks on our faces—at all times!” or face admonishment. So, when I met this psychiatrist, I had no idea how to talk to him. I feared the consequences of being negative, and literally had no vocabulary for expressing myself.

I only remember bits and pieces of this appointment. I remember him saying it was normal to be depressed when on one’s period, which really embarrassed me. I remember the threat of family therapy. Walking out of his office I remember ruminating about two outcomes. First, if this is all “normal” that means I must endure it for the rest of my life. Second, now I have really done it! I’m going to be forced to publicly reveal my feelings to my feared stepfather who will then punish me at home. My depressed self thought death was my only option. I swallowed a bottle of Tylenol.

Photo by Lori Daniels

Dr. Grahm was notified of my suicide attempt, promptly hospitalizing me on an adolescent psych unit. The first thing he said to me on the unit was, “Thought you tricked me, didn’t you?” I was horrified! Speechless. I really had tried to honestly communicate with him. I had gone to him in good faith, for help! He, the adult doctor, had failed me! But I was the one he blamed. After this accusation, he asked how I was doing at the hospital. In the just two previous days, my 17-year-old self still had not learned how to effectively communicate my feelings, so I just said, “My stomach hurts.”

“OK,” he smiled. “I’ll give you a medicine called Melaril to help.” Melaril is actually a first-generation antipsychotic withdrawn from the market in 2005 because it caused severe cardiac arrhythmias.

Upon taking this “stomach medication,” I started to have all kinds of strange sensations. I began to behave in ways I never had before. In response, Dr. Grahm increased the dose, then experimented with other pills. I hadn’t known it was possible, but I just kept feeling even worse over the next months.

The first thing I noticed was this insatiable thirst. I couldn’t read anymore because the words were too blurry. Then, I couldn’t sit still. I became agitated and irritable. One day a fellow patient said something mean and I heard myself threaten to stab her. I attacked my roommate while she lay in bed. I picked up a chair and threw it at my beloved mother on visiting day. For these violent angry outbursts, huge scary men in uniforms wrestled me into restraints. I was injected in my leg and left in an empty white room for hours at a time, not being able to relieve my constant incredible urge to move.

One night, I broke my makeup mirror into pieces and tried to slit my wrists. It was too dull to be lethal, but the blood it did draw provided at least some relief. So, I hid the pieces of glass all around the unit and cut again and again over the next several years.

Yes! I was depressed before the hospital. Yes! I needed help! But I never felt or did any of these other things until drugs were administered.

After three months of this decline into madness, Grahm took me off all the drugs, except the Melaril, and for the next month I received a series of ECT treatments. After the ECT, I was discharged.

Two months later, with three month’s worth of Melaril tablets in my suitcase, I went off to college. I lasted six weeks. I slept through my alarm every day and missed my morning classes. Mentally, I couldn’t comprehend or focus on the academics of the afternoon classes. I coped with the social aspects by heavily drinking. I was put on dorm probation. I was flunking out. I was so ashamed of myself for being such a cowardly, lazy, no-good failure. I wanted to die. I dropped out.

After being notified that I’d quit university, Grahm then arranged for me to be admitted to a renowned mental institution, in October of 1984. I was an inpatient on a unit for three years and then moved into their halfway house and became an outpatient (with frequent short-term inpatient stays) for the next 25 years.

The medication pile-up, augmented by multiple series of ECT, started again and lasted for the next 38 years. I’ve been on first- and second-generation antipsychotics and antidepressants, multiple mood stabilizers and anti-anxiety medications. I have this clear memory of my long-term unit psychiatrist emphatically explaining to me that the only thing that was causing my problems was a chemical imbalance and that I would be even worse if I wasn’t taking the medication. I never once thought that maybe the medications themselves were inducing a chemical imbalance causing great harm to my mind and body.

Then, in 1990, I was told to take the new miracle “treatment resistant” drug Clozaril. It changed things for me. I moved into my own place. I slowly completed a degree from a local college, taking two classes at a time with no other job. It was awesome! It truly was a miracle! Or was it just because Clozaril rarely has akathisia as a side effect—the akathisia I had been experiencing with the previous drugs, that had been misdiagnosed as mental illness?

I slept 12-14 hours a day. I drooled a lot. I gained a ton of weight. I also started having weird new symptoms. Lots of worrying, fears and behaviors I hadn’t previously experienced.

After graduating, I held down a part-time job for five years, at a local children’s theater. I loved it! At this time, I also got involved with an abusive partner for eight years. Not surprisingly, I became miserable. Even though they were aware of my abusive relationship, instead of addressing it, my treatment team started piling on the drugs again and along with the Clozaril, high doses of Wellbutrin XL and Lamictal became my cocktail. The drugs didn’t keep my alcoholic partner from beating me, but I was able to keep my theater job.

My chronic poor concentration and memory problems angered my girlfriend. So, to help with that, the doctors did a ‘brain map’ which showed “the brain waves all over my brain were extremely fast.” I was diagnosed with “over-focused ADD.” I found out recently from a neurologist I saw that “fast brain waves are most likely due to psych medication.”

In October of 2003, after eight years, thankfully, my abusive relationship ended. Remember those new worries and fears I mentioned earlier? They increased exponentially. I started wearing latex gloves 24/7; I quit my beloved job, fearing exposure to germs; I isolated in my home and spent all my awake time disinfecting it. So, the doctors diagnosed me with OCD and wrote more prescriptions. Now I know, though it has never been mentioned to me, that Clozaril is well-known to trigger OCD.

In 2008, I left town to live with my newly divorced mother. Practically as soon as I got off the plane, I was diagnosed with a life-threatening autoimmune disease, idiopathic thrombocytopenia purpura. A low red blood cell count causes this disease. Clozaril can potentially cause a low white blood cell count, so my new psychiatrist took me off the Clozaril cold turkey.

I was horribly ill from Clozaril withdrawal. Plus, the hematologist prescribed a six-week treatment of oral corticosteroid. Thankfully, the autoimmune disease went into remission, but the prednisone triggered a bipolar mixed episode. The OCD did improve after the Clozaril withdrawal but not much, and I dove into a severe tailspin for about four years.

To replace the Clozaril, I was prescribed 1350mg of Seroquel. I was still on the Wellbutrin XL (450mg) and Lamictal (400mg). Plus, he added 1mg PRN of Klonopin, three times daily. I was a zombie, to say the least.

Before moving to my mother’s, I established care at an outpatient psychiatric teaching clinic to continue my medication. But that meant a new psychiatrist every year. Each year brought medication changes. I was switched from Seroquel to Geodon, then another doctor switched me to Abilify. Then the next doctor added Adderall. It provided zero help with concentration, but it did help me stay awake for more hours in the day than before.

After switching to Abilify, I started experiencing restlessness again. But the symptoms were much milder than before, less blatant. It was still uncomfortable, and the uncontrollable movements made me self-conscious. I’ve complained to every new psychiatrist, but they just made jokes and brushed me off, saying it was not a big deal (to them).

It was difficult because Medicare refused to pay for this type of therapist, but I found an OCD specialist who offered a fee reduction, which I borrowed money to pay. I worked hard doing exposure response therapy and improved enough to take off the gloves and start volunteering in 2014.

I tried several times over the years to take myself off the meds. After a few weeks of the visibly painful withdrawal, I would be committed and literally forced to take meds until I was “med compliant” again. Mostly, I chose to dutifully and diligently take my meds. I believed I was sick, and I believed it was the responsible thing to do.

In 2020, because the OCD was still there, my newest psychiatrist prescribed a “high dose” SSRI treatment. The Luvox made me nauseous. So, my psychiatrist switched to an extended-release form of Luvox. I tolerated that well. The regular Luvox was covered, but Medicare would not pay for extended-release unless my doctor filled out special forms each month. Which he did.

But in 2021, my new psychiatrist wasn’t so willing to go to the trouble and, despite my nausea complaint, would only prescribe the type of Luvox that Medicare would automatically cover. Also, in December 2021, that same psychiatrist wanted to switch me to a new antipsychotic. He tapered me off the Abilify by January 1, 2022. At that time, I secretly chose not to take the new antipsychotic prescription. Because of the nausea, I finally stopped taking the Luvox, cold turkey, in March 2022. I began SSRI withdrawal a couple weeks later.

April, 2022: I am on Wellbutrin XL, Lamictal, Adderal and Trazadone. I am no longer taking Luvox or Abilify. On April 8th, my wonderful, healthy partner of seven years took me to Hawaii for two weeks! Other than a month of severe, debilitating Luvox withdrawal nausea, I’d been doing okay.

The day before we left, I was feeling like I’d had several cups of coffee. I just thought my partner had mistakenly made me regular instead of decaf that morning. Little did I know, our journey to paradise was also the beginning of my journey into akathisia and withdrawal HELL! The vacation was a nightmare, and I still haven’t woken up.

I can barely take care of myself now. I cannot manage household chores, cook, clean… I can no longer drive. I’m suicidal all the time. All I can manage is to keep existing. The horrible symptoms can’t even be described, there are no words in our language for them. From the minute I wake up to the minute I sleep at night, waking up several times, I suffer. I want to die. I do not kill myself ONLY out of love and respect for my beautiful partner and wonderful mother. My amazing partner has stuck with me, taking care of me and my mother. I fully plan to kill myself when they die.

Adding to my nightmare of the past year, the discoveries I’ve made have rocked my whole world to its core. To my utter shock and dismay, I now believe that the drugs, made by big pharma, that I was forced to take, by the psychiatric industry, for 38 years… have no scientific evidence for the treatment of any ‘mental illness’. Contrary to common belief, the “chemical imbalance” theory was debunked in the 1980s, just as I was told I had one. The scientific community still has no knowledge of the causes of mental illness.

I never had a chemical imbalance. Well, I certainly did after all those drugs! And I do now—because of those drugs!

After Hawaii, I sought help. So far, I’ve been ignored, denied, threatened. I’ve been passed off. To this day, no medical doctor has acknowledged that I have anything other than “mental illness.” Although several non-psychiatric doctors have diagnosed me with conditions resulting from psych drug side-effects.

When complaining of uncontrollable restless movements and extreme agitation, my psychiatrist told me to go back on an antipsychotic. When I asked, “Will that make the movements go away?” he said, “Maybe, not sure.”

Finally, last summer, I put my foot down and tapered off the rest of my last cocktail—Abilify, Lamictal, Luvox, Adderall, Trazadone and Wellbutrin XL. The withdrawal is excruciating but I won’t take their evil drugs anymore, even if it is killing me. Unfortunately, I am still suffering from akathisia, OCD, high cholesterol, rectocele, incontinence, migraines, and low cognitive functioning.

The past year has been spent waiting for doctor’s appointments. The neurologists and psychiatrists bounce me back and forth between them. None will diagnose me with anything, other than the psychiatrists, who now just say my mood is “unstable” and threaten that if I don’t take the medications, I’ll end up in the hospital, where they will be forced to medicate me. When I bring up the word akathisia, the psychiatrists say I might have it, but they have no experience treating it. They tell me to go see a neurologist and wish me the best.

The two neurologists I have seen are completely stumped. After ruling out restless leg syndrome, a neurologist told me to see a psychiatrist. When I mentioned akathisia, she admitted she has never had a patient with it. Then she added that I couldn’t possibly have akathisia. She explained to me that if I had akathisia, I would not be able to sit in that chair talking to her. Never mind the fact that, for the less than ten minutes I was sitting there, I was rocking from side to side, backwards and forwards, my feet tapping, squirming because my buttocks muscles were squeezing and releasing and I was wringing my hands while sitting in the chair. I said, “Oh. I guess there aren’t different degrees of akathisia.” But silently I screamed, “I am so sorry doctor, that my restlessness and distress isn’t bad enough for you!!!” She replied to my verbal comment with, “Well, I guess there could be different degrees of any illnesses. If you would like to make a follow up, I’m very busy. But maybe my assistant can see you in a few months.”

It’s 2023. I’m off the drugs. The brain damage hasn’t healed at all. I have no idea if it’s permanent. No one does.

I’m 56 now. Because of these drugs, I’ve been on Social Security disability my entire adult life. The doctors said not to work full time and all my part-time jobs ended because of my ‘mental illness’ symptoms. People on disability have very small incomes. One is allowed less than a $100 balance in one’s bank account, even if there were to be enough money left over to save.

I’ve wanted to explore alternative medicine, but Medicare doesn’t pay for that. And I don’t make enough money to pay out-of-pocket medical expenses. Even if I were to borrow money, these practitioners have never even heard the term akathisia. However, they will enthusiastically believe the psychiatric drugs caused brain damage and will take money to treat it. Should I trust them?

Next time I’m reviewed for disability, I won’t have a psychiatrist to sign off because they won’t treat me anymore unless I take their prescriptions. If I’m not actively under a psychiatrist’s care, Social Security will take the only income and the only insurance I have away from me.

It doesn’t matter that my brain is still so damaged that I can’t work even a volunteer job. It doesn’t matter that I’d love to be in treatment and get help but the only treatment available are the drugs that caused the very damage I’m now dealing with.

At the beginning of 2022, I had accepted my life and was grateful it wasn’t worse. I didn’t complain that I never had what most people got in life. I believed the doctors when they told my parents that I would never have the ability to support myself and have a family of my own. I trusted that the drugs were necessary and helpful. I just thought it was unfortunate that I had been born with a handicap. I just followed doctors’ orders and lived the best way I knew how.

I can’t help but think, knowing what I know now, that I’ve been betrayed and abused by an inept mental health system. What a victim I’ve been. My life was ruined by harmful, ineffectual drugs that psychiatrists literally physically forced me to take. Now, finally off the drugs, I have no hope for health. The psychiatrists broke my body and my brain and now they are washing their hands of me.

When I think about what has been done to me and what has been taken from me, I can barely breathe.

psychiatrists break bodies and brains
“I See Now” by Lori Daniels

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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.

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