What is the appropriate level of antipsychotics necessary to come down from a bipolar mania? This question should be garden-variety to doctors that invest over seven years of their lives into education plus countless hours in practice. What follows is an embarrassment. My insurance was billed over $100,000, six months of my life evaporated and I had to endure the worst abuses of the ruthless psychiatric system all in an effort to find an answer to a very simple question.
After watching the horrific treatment of the United passenger a couple weeks back, I’ve decided to tell my story with full candor in the hopes that others don’t suffer from the same mental lapses that plagued me as a patient. The time has also come for the anti-psychiatry movement to rally around a few key points rather than paint psychiatry dark with broad brush strokes. If we’re honest with ourselves, we haven’t made a dent in stopping the psychiatric bubble that now plagues nearly half of Americans, which is too bad considering that there are a few common sense reforms we should all agree upon.
My doctors have been prescribing mood stabilizers for as long as I’ve been diagnosed bipolar, but the drugs have no obvious effect because at the end of the day I control my moods, not a pill. Lithium was thought to remedy mania since as far back as the Greeks, but it was actually the hot baths where the lithium originated that made the patient’s body tired and finally willing to succumb to sleep, which is the obvious way out of a mania. The other class of mood stabilizers like oxcarbazepine have no active ingredient and no sedative effects; the rumor is that combined with antipsychotics they produce some kind of magical potion to pull a patient out of mania. This theory is complete rubbish. We know antidepressants work just barely better than placebo, meaning they don’t work at all. Something like lithium that is a poison at level 10 cannot be a salvation drug at level 7, otherwise we should all be consuming more lithium. But sadly, doctors are a bit too squeamish to apply such remedies to themselves or their family members.
To test the theory that a lack of sleep would trigger mania and resumption of sleep would restore health, I conducted what I thought would be a straightforward experiment: while still on lithium and a low dose of antipsychotics, I suppressed sleep for a few days. Immediately I could feel the roar of mania within my brain. My mind figuratively stretched and the supposed safety net of the cocktail I was on did nothing to prevent my third mania from occurring. As expected, I felt creative and enjoyed the natural high for a few weeks, but anyone that’s been manic knows that lack of sleep for days on end is analogous to torture. The time finally came to be treated, but sadly, as you’ll soon learn, hospitals have little training for reducing mania if the patient doesn’t exhibit obvious signs like rapid speech and full out psychotic symptoms.
The first hospital I checked into gave me antipsychotics and released me after 48 hours even though I was begging to stay and be treated more thoroughly. The economics of a hospital bed are simple: at $10,000/night, mania/lack of sleep cannot be billed for more than a night or two, and they don’t give two damns what happens to you in the outside world when another sick patient is waiting with insurance willing to pay for longer use of the same hospital bed. After a handful more days, the time came for a second hospitalization. Same initial process, but this time they recognized that I needed more than a 72-hour hold and kept me in the psych ward for a week. However, I had no voice in my treatment and despite obviously needing sleep, the doctor thought it a good idea to wake me up at 5:00 every morning to receive an injection that supposedly dripped antipsychotics into my system, but in reality had no sedative effect and simply robbed me of a couple hours of sleep I badly needed.
Again before I was in total remission (and how could I be in remission having to wake up so early every morning?), they released me only to treat me again a week later. The problem is that the dose they gave me in the hospital worked and made me fall asleep fairly quickly, but in the outside world the recommended dose was lower and didn’t have enough sedation to make me fall asleep consistently. I eventually flew to a different city in the hope that a different staff would finally recommend the magic potion that would CONSISTENTLY work. My outside doctor intervened and gave me a prescription for Risperdal, but again at a dose that was too low to be effective. So I took matters into my own hands in a way that could have ended tragically. Manic, sleep-deprived and very scared of a world where no one cared whether I was healthy or not, I took pill after pill until, almost before I knew it, 4,500 milligrams of Seroquel were in my system and I was walking aimlessly through the airport unsure of what my next steps were.
A cop happened to pull up to the curb and noticed me in obvious distress. “Spit out what’s in your mouth, NOW!” A half dozen pills came tumbling out. Soon, a few more cop cars descended and they took a statement from me while I was handcuffed and sitting on a curb, beads of sweat coming out of every pore in my body. Had I fatally overdosed? Would I survive? Why was the ambulance taking so damn long to get there? The cops were, to their credit, professional, and quickly turned me over to the EMT workers who were mortified that I had taken such a large dose. Sadly, only a fellow mental patient or an accused terrorist in Guantanamo could relate to the delirious and painful effects a prolonged period of little to no sleep has on the psyche. To my chagrin, after a brief stay at a good hospital, they transferred me to a place with metal rods for a mattress and the same ineffective dose, releasing me after a couple days when I was no longer a threat to myself.
At this point, my money was running low and I had to fly back to my native San Francisco. My parents were flabbergasted that I had spent so much money and was going in and out of hospitals; they didn’t know what to do and refused to allow me entry into the house until I got help. But every time I got help, they put me on the same low dose and lithium combinations that didn’t do the necessary job. By this point I was homeless in San Francisco and found myself going to the police station to feign self-harm so I could be admitted to a hospital and hopefully connect with a doctor that understood. But incredibly none of them did. I was placed in a halfway house for a couple weeks, only to be kicked out because they didn’t feel I was improving fast enough. But I couldn’t improve when the Seroquel dose wasn’t sufficient to sedate. I would check myself back into the hospital only to find them offering Benadryl — fucking Benadryl — in the hope that I would simply go away.
But my anger started spilling over at this point. I demanded to see a psychiatrist, and after a three hour wait, a doofus from the psych ward finally emerged. I spoke slowly and explained I needed something between Benadryl and Fentanyl in strength. I did NOT want to be forced back into emergency psych’s locked unit where I had been three times over the last month, all to no avail. But because I was homeless, the expansive definition of GRAVELY DISABLED meant I had no rights and they wheeled me up to psych anyway.
SF General’s Emergency Psych Ward is one of the dirtiest, dingiest dungeons in all of America. Three SF police officers are stationed to make sure no angry patient makes contact with staff, and staff believes it is perfectly reasonable to spend only 10-15 minutes per day interacting with each patient. I began spitting in the vicinity of the police officers, but not at them because that’s assault and they were only doing their jobs, sitting in chairs bored as can be. But this lack of viewing me as a human being was bothering me. To compound my anger, the place was so grizzly that the average American would be shocked — twenty beds fit into such a small, unclean space that supposedly was designed to help people.
The staff ordered me into a seclusion room which I went into, thinking the worst was over. But no. Before I knew it, a half dozen SF sheriffs were pounding on my door. I immediately leaped onto the bed stomach first with my arms to my side. Anyone that’s watched Lockup on MSNBC knows what happened next. They assaulted me, the officer stationed to my head pushing so hard on my neck that I would later need to be treated for neck pain. An officer on each arm, the two sheriffs responsible for my legs bent my knees and pushed up as hard as they could, sending pain searing through my entire body.
They knew I had disrespected their fellow cops and thought it their right to inflict as much pain as possible without leaving bruises, several of them hurling obscenities at me as if I was an actual criminal as opposed to someone paying for the service of trying to get better within a hospital rather than a maximum security unit. After five excruciating minutes, my arms and legs were strapped and a spit mask placed on me as I lay claustrophobic on the bed, shaking at the extreme example of violence that so quickly escalated over something so stupid as spit. And to make matters worse, the doctors knew who I was from my previous visits, so they fake injected me in order to write in their reports that I was so manic and out of control that this display of violence was justified.
A couple hours passed and a friendly nurse untied me and gave me something to eat. The next day they wheeled me up into the psych ward, and this time the doctors treated me seriously. They introduced me to Thorazine, one of the oldest and most sedative of drugs, and combined Seroquel with the moderate dose of Thorazine. Finally, after nearly four months of hospitalizations, a way to permanently come out of the mania. The female doctor patiently explained that the combination of drugs is what worked; any one drug in a moderate dose wasn’t enough to give me the sedation I needed to sleep. Eventually they moved me off Thorazine to 6 mg of Risperdal and 200 mg of Seroquel, which put me out within two hours every single night.
Obviously, this was a horrifying ordeal to go through. But I never again have to question what works and what doesn’t, nor am I scared of big, bad Thorazine. The pharmaceutical drug market knows that Thorazine was and remains a miracle drug in terms of sedation, which is why every attempt from Risperdal to Seroquel to Zyprexa and now Abilify is simply a knock-off of Thorazine. The infamous side effects are as much a response to physical violence as they are to the drugs themselves. I was shivering not from what was happening inside my brain but from what my body had been exposed to as a result of the assault I went through. I witnessed other cases of similar violence, but a doctor’s order is the law and that’s that.
What can we as reformers advocate around for immediate change? Unlike Tom Wootton and his beliefs that drugs are always bad (which simply feeds into his business model being the healthy alternative), we have to recognize that short-term acute can become long-term chronic in the flash of an eye. They threw all sorts of labels at me on top of bipolar, including anti-social personality disorder and schizoaffective disorder — nonsensical terms I quickly brushed off because I knew mania was my one and only problem. To keep things simple, I propose three rallying cries that we can all unite and work towards to improve the system and alleviate short-term suffering:
1) Newspapers and governments have ombudsmen — why not a hospital?
Yes, there are patient advocates that appear on court days and spend a whopping twenty minutes speaking with patients and preparing them for a visit with the judge. But what about the cries for help that are ignored daily on each and every emergency psych ward, from people that doctors dismiss as out of control patients? A poor woman had a hernia and the doctor was too busy surfing the Internet to heed her pleas and simply threw her into an isolation room. It wasn’t until other patients and staff intervened that the doctor applied what limited knowledge he had in attempting to treat this woman.
Nurses are subservient to doctors and too many lack empathy to properly function as a liaison between patient and doctor. And if we’re being honest, virtually every doctor working in an emergency psych ward suffers from antisocial personality disorder themselves. Why is it okay to spend ten minutes a day per patient and bullshit and waste time with colleagues the rest of the time? An ombudsman should have seniority over a doctor and be able to write objective reports linking the connection between a patient’s pain and the doctor’s treatment for the army of hospital administrators that never step foot on the ground floor of this travesty known as involuntary holding rooms.
2) Rally newspapers and magazines to our cause against forced stays and shoddy conditions
Sadly, in America, hear-no-evil see-no-evil is the status quo. Only when One Flew Over the Cuckoo’s Nest was released did the barbaric practice of lobotomies ebb. Since the average American cannot picture a modern dungeon without shows like Lockup to take people into the world of an emergency psych ward, the blame for being there in the first place is placed squarely on the sick patient. If Americans had exposure to SF General’s Emergency Ward, if pictures could be taken and interviews with patients done, every single person responsible for working in that dungeon would be fired within a week. How can we turn cameras and attention to these conditions the same way African Americans used images of police brutality in the 1960s to win civil rights concessions? This question should be on all our minds because that’s how this fight could end overnight. But what the mainstream doesn’t know, they don’t know, and we’re too busy chasing our own tails to educate them on the obvious abuses of power that occur every single day.
3) Draw a deep line of demarcation between short-term acute and long-term chronic
We come across as radicals when we lament things like increases in the number of dopamine receptors when these obviously go away from atrophy after the acute crisis is over. Brain damage was the last thing on my mind as I was looking for a cure, but modern medical research claims there’s no such thing as sleeping drugs. Yes there is: combinations of antipsychotics. I’ll remain on my cocktail for another month or two to make sure I fully come out of any lingering mania, and will always have a bottle nearby in case I have sleep problems again. Simple breathing exercises and counting down from 1,000 help, but nothing works better than 6 mg of Risperdal and 200 mg of Seroquel. Schizophrenics also have acute mania crises and this combination of drugs helps restore order, but as Robert Whitaker has advocated, the evidence is highly suspect that these people need permanent doses far in excess of what’s necessary to return to normal. If we work with psychiatry to acknowledge that modern medicine has its place, we can fight for limitations to these authorities and their incredible range of power over human lives.
I had to go through a deep personal tragedy to find a cure that can be applied to anyone suffering from mania. The lesson is to not fight with doctors but to ask for the highest dose they’re willing to prescribe of a combination of antipsychotics. When order is restored, the choice is entirely ours whether to continue taking medication or not. And levels of sleep, not fear of the unknown, should be our guiding light as to what is an acceptable level of treatment. Having the peace of mind to know that I can slip in and out of mania in the future and have a cure handy makes me highly comfortable moving forward. But sadly, the fight for true reform still remains in the earliest of innings because we foolishly cannot narrow our scope and decide what exactly we’re rallying against.
[Editor’s note: due to personal circumstances, the author has chosen to publish under an abbreviated version of his name.]
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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