Now that the worst of it has passed - the shakes, the chills, the twitching, the sweating - and was made a little easier by a prescription of Zanaflex which has had me dozing off and on for the last 24 hours, I figured I'd write a bit more about me since I'm a narcissist and writers are supposed to write what they know.
I've grown up around drugs, both legal and illegal.
One of my my most painful childhood memories was taking my mom to the airport - she was flying to Oregon to participate in an experimental drug trial after several car accidents had left her in excruciating pain. It was the first time she had ever been away. I still remember crying on the ride home while The Spinners covered "Working My Way Back To You" on the radio. She came back a couple of weeks later with bottles of DMSO. She typed up adhesive labels for them and they sat on the floor of my dad's closet for years. I was in those accidents too, but I guess I was the lucky one since the pain waited a few years to hit me.
In 1996, I decided to drive to Missouri for a friend's New Year's Eve party and, since I knew my buddy and I would have to drive in shifts to make it, asked my dad if he had anything he could give me to make sure I slept. He handed me a couple of small pills and said they would do the trick. He gave me Paxil. At that point in his life, he had gained dozens of pounds and slept nearly all day after having spent several years on disability. I don't know what else he was on, but when I found out Paxil was an anti-depressant years later, everything became so much more clear.
Most of the people in my family had substance abuse issues. My dad never admitted to being an alcoholic and never went to meetings but admitted that he might have gone overboard a few times in the past. I saw it firsthand when my mom threatened to leave him after he drove home drunk from a golf game and brought a few friends with him. She was pissed, rightfully so. All of us had almost been killed by a drunk driver when I was very young - he didn't see what the problem was and his golf buddies thought my mom was being a bitch ... she was, but they came by it honest. He was on a cornucopia of medications after anti-inflammatory drugs ate out his stomach lining and I had to give him a blood transfusion to keep him alive. Sleeping pills, painkillers, muscle relaxants - you name it, he took it. He had a medicine cabinet filled with prescriptions to help him deal with the damage that bleeding out had caused.
My half-brother was a disaster of drugs. Legal, illegal, smokable, snortable, injectable, drinkable, inhalable - if he could get it into his system somehow and it got him high, why not take it? I don't know what what he was on, but I know that he was high when he tried to kill my dad with a butcher knife at my fifth birthday party. I had gone to his bedroom to see if he was okay because he had been sent to his room after everyone but me realized he was loaded again. I found him on his knees and praying - he screamed at me to get out and the next thing I knew, my dad was holding a 2x4 like a baseball bat while my mom stood between them and restrained my half-brother until the cops could show up. I stood at the window in my grandmother's living room watching my half-brother throw himself face first against the glass in the back of a prowl car until they drove off. I only talked to him once after that - when I was 12, he had called my mom from somewhere and wanted to talk to me. I picked up the phone, told him that I'd kill him if I ever saw him again and hung up. The last I heard, he was in prison for shooting a cop during a drug deal gone bad. He's probably dead now.
Most of my friends from junior high and high school had substance abuse problems - my next-door neighbor, an older kid who was my only friend for a lot of years, developed a coke habit and started making and selling meth to support it. A lot of the kids I went to junior high with bought their drugs from him. With four meth dealers and two labs in a two-block radius, I slept with a bat by my bed.
I've lost track of how many friends I've lost to overdoses or alcohol-related accidents - most of them were just trying to kill some kind of pain, or mask it with fake happiness that evaporated when the whiskey or heroin wore off.
This is what I've grown up around. This is what I know. And, save for prescription medication given to me by a doctor for specific conditions, I've stayed drug-free, somehow. I've never even really had a problem with trying. And, as most of my friends knew, the thing that was most frustrating to me about this whole experience was knowing that I was almost certainly dependent on painkillers to some degree and that any dependency would only worsen over time. I could accept the possibility of having multiple sclerosis without even thinking twice. There is nothing I can do about that. But a dependency? That's well within my ability to control. I did 28 hours cold turkey with a small amount of vicoprofen left here. That's 28 hours of pain and suffering that I knew I could alleviate at any moment just by taking a pill which was only a few feet and a glass of water away.
Instead, I kicked.
I know and have known too many addicts. I have a lot more sympathy for them than most people do because of what I've gone through - I have been in their shoes. I just took them off and put my own back on as soon as I could.
So now my medication regimen is Lyrica, Cymbalta and Zanaflex. No opioids for the moment and probably not for a while. I have no idea what comes next, but 8 hours of continuous, restful sleep that begin in the evening and end in the morning would be a blessing.
It's funny, how we take the little things for granted.
I've meant to link to this post of Liz Spikol's for a couple of days, because it says much of what I've tried to get at on this blog for the last 9 months only Liz does it with 10 times the eloquence and none of the bullshit. She's responding to queries from the anti-psychiatry crowd (whom she and I both respect) and laying out her own thinking (with which I largely agree). Better late than never, I quote from some of it and link to the rest:
"It would be ridiculous to "worship" any field of medicine. It's not a question of emotion. I take pragmatic advantage of the medical services available to me—in every context. I treat my asthma the same way I treat my psychiatric illness: When I have a problem, I address it with a trained professional. I haven't been schooled in how to treat lung disease, so I rely on my doctor. If my medication is causing unacceptable side effects (my old inhaler gave me oral thrush), I go for a medical consultation and we adjust the treatment. I approach psychiatry in exactly the same way.In my experience—and I've only been doing the journalism thing for seven years, so I still have a lot to learn—I have literally never met a person with schizophrenia or bipolar disorder who was able to be medication-free for a lifetime and still maintain the kind of life that worked for them and for others. I have seen many people who were medication-free but still plagued by demons, or at least compromised in some way by the illness. This isn't to say there's no other way. It's to say that's been my experience as a journalist, patient, friend and family member."
Oh, and Spikol has also begun a book club and if you are interested in such matters go here.
A few people have written or commented on the recent Fuller Torrey post, damning him or praising him. What's interesting to me is that the favorable responses generally come from family members of the mentally ill while the con-side is generally represented by patients themselves. Interesting dynamic.
Regular readers know that I take issue with his Treatment Advocacy Center's distorted rhetoric. I also have trouble buying his cat-shit-causes-schizophrenia hypothesis (given the number of felines in my world since I was in the womb I ought to be the most schizophrenic guy on the planet!). I do not, however, question the man's dedication--he's spent a lifetime grappling to improve things for the mentally-ill--nor do I question his heart.
An update from the Yates trial, where yesterday the first psych doc to interview her after she drowned her children in 2001 testifed that she was psychotic, picking her lip until it bled and rambling about Satan. As I've said before, I am not a fan of the insanity defense. But this is one of those times when not guilty by reason of insanity may make sense. We'll see.
The whole thing is shitty and sad--but what really eats at me is that she had apparently been suddenly removed from psych meds a month or so before the murders. Whether you are for or against meds, down with or dead-set against forced medication, when someone is taken off meds it is wise to take real caution because the transition can do really fucked up things to people.
Phil Gordon said it most concisely about an entirely different subject:
I want to puke.
I have felt nauseated for almost 18 hours now, save the six or seven hours of sleep I managed to get when I finally passed out. I haven't had a painkiller free day in over 10 weeks. Due to my pain management doc's refusal to prescribe narcotics, I'm having one now whether I like it or not. It's been nearly 20 hours since my last dose of vicoprofen, a medication that was becoming less effective. After 10 weeks, I'm surprised it was working at all. Looking back on it as I try to find a comfortable position and measuring how long my TENS unit has been on in hours (almost 4 hours straight now) instead of minutes, I'm painfully aware of how effective it really was and how ineffective the prescribed remedies seem.
Let me backtrack for a few moments here. Let's get to the backstory so all of this can make some sort of bastardized, munged-up sense in the world of pharmacology, pain management and state and federal legislation and action. And forgive me if not everything is spelled right. I'm shaking a bit, I feel cold and am exhibiting some classic symptoms of withdrawal at the moment. Give me a pass on the grammatical bits.
I am a 33-year-old male. I've never had what anyone would consider good health. Chronic bronchitis which my doctors still hesitate to call chronic obstructive pulmonary disease. Sinus problems that have required three operations to date. The shit that runs in my family, including suicide, fibromyalgia, diabetes, cancer, arthritis of all sorts, heart problems, thyroid problems and so forth, is so bad that I had a vasectomy about six or seven years ago so that I wouldn't risk passing any of these genes on to a kid. Instead of debating the point, my family physician congratulated me for having the proverbial balls to take such decisive action. I have never regretted my decision. I never will.
I have had back problems for the past several years and am currently undergoing my sixth round of physical therapy since 2000. I had four rounds in San Diego between 2000 and 2002. I moved to Illinois for work and had a series of facet-blocking injections in 2003. In 2004, I was back in physical therapy after missing two non-consecutive weeks of work with back spasms. That's when I was diagnosed with degenerative disc disease, a diagnosis confirmed by another doctor. And everything was fine until February.
See, in February, I was knocked out of commission for a week with back spasms which were treated with vicodin and 800 mg tablets of prescription Motrin three times per day. By March, I was missing time due to the side effects of the Motrin. I staggered through the rest of the month until April rolled around and all hell broke loose. I missed work on a Monday, barely made it through seven hours on Tuesday and, by the time I left after six hours on Wednesday, couldn't stand up. I left work and went immediately to the doctor's office and my doc put me on disability on the spot.
That was more than 10 weeks ago.
That is also about the number of times I've been able to go outside since all this started.
See, the MRIs revealed that three discs in my lower back are all but gone. There are black spots where those smooth white ovals used to be and my neurosurgeon says there is nothing she can do surgically to help. They also showed what my neurosurgeon called striations pretty high up the spinal cord and what my pain management doc told me were lesions at C2 / C3. Based on what they've said and what I've experienced lately, I strongly suspect that my neurologist will officially diagnose me with multiple sclerosis next week. Two docs have told me that I'm showing symptoms of it. Third time's the charm.
Those two doctors haven't mentioned any other conditions that could be causing these problems. The only thing they said was MS.
And typically, docs don't say shit that is likely to freak a patient out. Call me crazy, but doesn't the possibility of having MS put most people on edge? I mean, sure, Annette Funicello has done all those commercials, but what about that poor SOB who kept saying that Larry Walker got him $2.8 million? He did commercials too and he was paralyzed from the neck down. Doing a commercial doesn't equal quality of life for me.
I'm a gambling man. I used to pay for trips to Vegas by playing poker. Based on what I know and what my doctors have said, I'm betting on MS. I'm just hoping that my bet on one of the milder forms pays off.
So that's where I stand. I was supposed to get married this year. I was starting to think about graduate school. I was starting to feel like, after three and a half years of inertia in Illinois, I was beginning to move forward.
And now I just shift restlessly from sitting to laying down, trying to find a position that hurts less while praying for unconsciousness since it's the only time I don't hurt at all.
I had another appointment with my pain management doctor today which is what sparked the official beginning of my contribution to this blog, since I feel like the only ally I have in all this is my primary care physician, a wonderful Canadian woman who gets the holistic approach and likes patients to be actively involved. Sadly, we've been in the realm of specialists - neurosurgeons, physiatrists, pain management doctors, neurologists and so forth - for two months and there doesn't seem to be much she can do to help. Based on today's appointment, she can't even continue the vicoprofen, the only med that was yielding any noticeable relief, because my pain management doctor has taken over all prescriptions and does not prescribe opiates.
Instead, I've been on 300 mg of Lyrica daily for a month since, even though its primary use is as an anti-convulsant, it has shown some clinical results in relieving pain. I mentioned that I've been shitting blood lately. Neither the doctor nor the nurse seemed especially concerned. Instead, they added 30 mg of Cymbalta, an anti-depressant, to my regimen since it has shown some results in relieving pain. They also both have some interesting side effects, including suicidal ideation and mania.
While I understand that medications can take time to work, I feel worse now than I did before I began seeing a pain management doctor. In other words, the doctor who specializes in helping people in my situation has had the least effect and I'm feeling the worse for it.
The pain was so bad tonight that I nearly took a friend up on her offer of a friendly smoke-out. I've been sick all night, presumably from withdrawal from the painkillers. I can't sleep, I can't get warm and I can't stop sweating. I also can't take another painkiller to ease the pain, especially if no more are coming. If I have a choice between kicking now or delaying it for 7 tablets or so, I might as well kick now. In light of the nausea and excruciating pain, marijuana seemed like it might help.
Philip spent several hours on the phone with me tonight while I've been coping with it and I finally was able to get lucid enough to realize that smoking out would directly conflict with my long-term goals and also eliminate my moral and ethical credibility in advocating reforms for pain treatments at the state and federal level. Someday, I'd like to be a lawyer, a prosecutor, even. If I'm going to do that, I need to uphold the law now, no matter how much pain I'm in at the moment. And, on the balance of things, it seems to be much easier for elected officials to listen to someone who suffered from playing by the rules but played by them anyway.
But what hurts more than that is having to delay plans - to get married, to apply to law schools, to become a stepfather, to begin moving forward in my life.
And what hurts more than that is not being able to go to work for more than 10 weeks. In the past, I went to work if I could get out of bed. It took a doctor's note and a diagnosis of bronchitis or better to keep me home.
But the thing that hurt most today was talking to my fiancee tonight and hearing her tell me that I sounded like a junkie.
And what hurts more than all of these together is the pain of not being able to pick up her daughter when she lifts up her arms, looks up at me and says, "Hold me."
And I keep looking at the side effects of these meds and all these Web sites about how Cymbalta and Lyrica can both lead to suicidal thoughts, and I wonder if the effects stack - if I'm 5% more likely to try to kill myself as a result of one of these meds, is it 10% now since I'm on both? It is strictly additive or multiplicative? How do they interact? Perhaps it's exponential?
And then I think about my mom, who killed herself in 1997. She suffered from fibromyalgia and, back then, it seemed the only treatment was vicodin and lots of it. It took 60 500 mg tablets chased with half a decanter of scotch to do the job - I don't know if that was her tolerance or if she just kept going long after she had hit the magic mark. What I do know is that I found dozens of bottles of vicodin in cupboards - 100 tablet prescriptions in stacks. And as I read about these drugs and their side effects, as I look at what they're approved to treat and what they are treating and how they treat it, I have to wonder ... do they really cause or contribute to suicide? Or is it just that the patients on these meds are tired of hurting, tired of living in constant pain and being on medications that don't help?
My experience with Lyrica is limited to one month. In that month, my sleep schedule has been shot to shit. When I can sleep, it is usually in the middle of the afternoon. When I can't, which is most of the time, I hurt. It is clear to me now that vicoprofen was the only medication offering any relief, and that its interaction with the Lyrica is what knocked me out for 16 hours at a stretch. I do not see any effectiveness at all and, after a month, I damn well should since I feel an improvement within 20 minutes after taking a tablet of vicoprofen.
If my experience with Lyrica is typical for people with chronic pain, if the medication shuffle for pain management is the same as it is for mental health, I can hazard a guess at why people kill themselves while on these meds.
We are, after all, animals. And considering that a wolf will gnaw off its own paw to escape a trap, is it any wonder that we might exercise more permanent means to relieve pain that we simply cannot escape? Is it any wonder that we see what looks like an endless cycle of medications that don't work and unabated pain - whether physical, metal or both - and choose the only relief left to us, the only relief that places us beyond prosecution for trying to alleviate our pain with treatments that are anecdotally effective yet outlawed in most states, the only relief that breaks the cycle of new hopes and seemingly inevitable letdowns of new miracle drugs that promise to fix it all for good and with no side effects, the only relief that we know - once and for fucking all - will finally end the pain?
I need some mercy from the medical establishment right now, not moralizing about the problems associated with opiates. I need to not hurt. In my mind, the Hippocratic Oath has been violated - if the first rule is do no harm and a doctor is refusing to continue prescribing medication that offered relief, than harm has been done because I am now in worse shape than I was before. I need help and sympathy from my doctors, not lectures and overpriced new prescriptions for drugs that may have some dubious effect.
And if I can't get that mercy, then I'll behave like the wounded animal I am, revert to base instincts and visit wrath upon those who are the source of this pain.
There's an old African proverb that some friends of mine put on a t-shirt - to paraphase, until lions have historians, tales of the hunt will always glorify the hunter. If I don't get the mercy I need, I intend to hunt the hunters.
And, generally speaking, when lions hunt something, it tends to get bloody.
One of my best friends is going through utter hell with chronic back problems and massive chronic pain. He cannot work much less walk down the hall of his apartment. Until the neurologists figure out what the hell is going on with him and how to fix it, my friend, Scott Puckett, is in the hands of a pain management doctor who just took over his case from his primary care doctor. The pain magement doc's first move? Take away Puckett's pain meds! And it ain't going well.
So Puckett is going to start posting on this blog because there are many substantial issues around chronic pain in our culture--as substantial as the ones effecting psych patients. Only people with chronic pain have the federal government restricting the use of opiods--to the point of jailing some doctors who prescribe them for pain management--and fighting any medical use of marijuana.
So be nice to Puckett. He's a fine writer and pretty pissed off about what's going on with him. Which I hope is over damn fucking soon. He's got other shit to do with his life--like starting law school in the fall!
I spent a lot of time talking with him on the phone last evening instead of pulling together a post on the fucking outrageous situation concerning the treatment of hypomania. In my mind, it was time well spent. Instead, I have a small post following. Back to reality manana.
Take it away, Skippy.
And it goes like this. All kidding aside, a study just came out in the UK claiming that:
"Over 40% of people regularly worry that negative comments are being made about them; 27% think that people deliberately try to irritate theml 20% worry about being observed or followed; 10% think that someone has it in for them; 5% worry that there's a conspiracy to harm them."
The study claims that one-third of all Brits suffer from paranoia and that the rate is as high as for depression and anxiety. And now there's a British website all about paranoia. We aren't talking paranoid schizophrenia or bipolar disorder or depression here. This is something else. At least, I think it is.
Um, I see another front being opened on the "everyone is mentally ill" front. And when I accessed an article on the study, it had an ad for Abilify on the page. I'm sure there's no connection!
A mom is murdered in Maine. And now one of the state's papers is arguing against patients' civil liberties and calling the Treatment Advocacy Center "highly-respected." By whom?
College students want more meds. I think they need more bong hits personally. JK.
Mississippi set to execute man with bipolar disorder. Only in the South.
Trying to find psych meds that mimic nicotine. Most schizophrenics and many bipolars smoke a tons of cigs, perhaps medicating their dopamine receptors. I knew smoking was good for something!
Social networking site claims to be first for the mentally-ill. Um, and MySpace's groups aren't?
A regular reader of this site went to Fuller Torrey's appearance in Seattle last night. She asked questions and took notes:
"I attended the forum and YES Torrey believes in his cat poop theory to the extent that he said: "Do I believe that my sister is schizophrenic from her pet cat that was sick? Yes. Can I prove it? No."He said and I confirmed with my own question to him regarding this statement he made: Women are told not to scoop the litter box while pregnant, but if the poop sits there for 24 hrs, the toxoplasma gondii becomes airborne, to the extent that then we are all breathing in this infectious air and are all exposed, and also the poop in the sandbox at playgrounds, well this can become fluffed up and airborne for 18 more months.
So damned if we do and damned if we dont because according to him, the cats eat the rats, the cats live in the barn and poop on the livestock feed. We're doomed, and most likely we are all toxo positive (he is) and it lays dormant waiting for a trigger or age bracket, to release schizophrenia.
Another major point he made was that antipsychotics= antiviral. He said Haldol is the best one that decrease these antibodies. I asked him to clarify how antipsychotics were antiviral and he said "I can't." He used chlorpromazine as an example, and he said Haldol reverses effects of "T-Gondii" in rats, webster et al 2006. I will leave it at that.
The longer I listened, the more I agreed with his very own words: "my system is delusional". You are so right Torrey.
I also believe that telling the public not to get a cat for a 6 year old but for a 19 yr old sounds like that old medicine man junk. Oh, and schizophrenia is 'recent' since the 1800's right when it became popular to have cats as pets. He also wishes he had his sister's pet cat's brain to add to "their cat brain collection". Yes, he even has cat brains; he says cats can go "mad", and are "neurotic".
Bottom line ladies, dont worry about not scooping the poop when pregnant, (according to Torrey) if you breathe the air over the litter box with 24 hr old cat poop in it, youre endangering your baby. This man wants forced treatment laws.
I think he needs to get a cat, and retire from making a fool of himself in public."
So this is the guy running the "highly-respected" Treatment Advocacy Center? The one that uses bogus stats to paint the mentally-ill as inherently violent and, then, argues that we must deprive them of their personal liberty? His science is so far out of the mainstream that some scientists have described him as "crazy." I have no way to evaluate his research--although shouldn't he be able to prove his assertions are true before everyone goes home and strangles their cats and gulps down some Haldol?--but I can assess his political wing's (TAC's) rhetoric. Like his science, it is filled with unproven hypotheses and half-truths that a gullible media is willing to print and a lame-brained public is willing to accept at face value.
To which I say, "Meow."
One of the local Seattle NAMI affiliates charged $50 a pop to see Torrey. I won't pay to see him so I didn't go. I hope someone taped his cat-and-Haldol show.
Below is a post from Lizzie Simon, who wrote the fine book Detour. It's a great post. I hope she works this into a longer article at some point because the whole topic of spirituality and mental illness is an important one--a life saving one in my experience. Leave comments and such.
John McManamy sent me a very interesting email the other day, prodding me to look into a troubling disconnect in the world of treating bipolar disorder. I have looked into a it a bit. He is correct. I'll look into it more when the weather cools down in Seattle--and likely upgrade my assessment from "troubling" to "fucking outrageous." But it was 92 degrees here today, my apartment is a top floor unit and I have no A/C or crossbreeze. A long way of saying I'll post about John's point when I am able to focus my off-work hours on something other than trying to stay cool. (There are dots to be connected.)
We usually don't get a heat wave like this one until mid-August--and it's light out until 10 p.m. this time of year, which doesn't help matters.
BTW, John and another reader or two are going to be at the NAMI National convention in Washington, D.C. later this week. I cannot wait to hear all about it.
This from Lizzie Simon, author of Detour. The text, copyright and so on for this post belong to Simon. So no stealing.
Lately, I've been going to CBT therapy on Mondays and Quaker Meeting on Sundays. In therapy, we talk about my relationships at work, in my community and with my boyfriend. And in Quaker Meeting, I meditate with about a hundred other people, and occaisionally someone stands and gives a message about love, forgiveness, faith, etc.
Lately, the effect of therapy and Quaker Meeting has been not exactly equal, but so complimentary I sort of can't imagine one without the other. I know I'm not the first to talk about faith and religion in its role in healing, and I do of course know that many religious communities condemn people with mental illness or create major mental distress in people. But my Quaker meeting is just about silence, peace, equality, simplicity, and witness to testimony.
Imagine a religious community that really was about love and peace, and that's exactly what I'm so lucky to have in my neighborhood in Brooklyn. The surprise, I guess, is that therapy is becoming more and more directly about the same values, love and peace. I am currently enjoying a seemless integration of religion and science.
When I think about what therapy has taught me---to learn responses to conflict that build instead of rupture relationships---it is the same messaging and skill set I learn from Quaker Meeting. And when you think about what it takes to change your own behavoir and cognitions---the crucial work of CBT--- the moments in which you learn to build silent steady relaxed thinking--this is basically just prayer, right?
I am NOT suggesting that prayer alone heals depression or bipolar disorder or any major mental illness. But I do think that prayer can be used in addition to other stategies to stave off triggers, work though anxiety, climb out of depression. And I am here to testify that being part of a spiritual community, and leaning on that community once a week, and practicing silent meditation with them, and learning how to use prayer and silence, and letting my spiritual comminity bring out the most loving compassionate version of myself, and having those values validated and strengthened by my therapist have all been doing miracle work in my day to day life and radically increasing my mental health.
I'm still bipolar (and Jewish, by the way). I've been on lithium for thirteen years and it has worked for me, in keeping major episodes at bay. But medication alone would never have worked to bring this kind of relief and harmony in my life. Times in my life that I have been self destructive or depressed or excruitiatingly anxious I have lacked this level of support. To paraphrase and riff off of Eleanor Roosevelt, there is so much more to mental health than the absence of mental illness.
Amen.
Some of you may have already heard that Doug Douglas, county executive of Montgomery County, Md., dropped his bid to become Maryland's governor last week, citing depression as the reason. Sorry it happened to him, but props for the honesty.
Kay Redfield Jamison follows with an op-ed in yesterday's Washington Post opining that others in public life need to be more forthcoming about their psych situations, in order to foster public understanding, yada yada.
We sure as hell have come a long way from 1972, when Senator Thomas Eagleton (D-Missouri) was forced off George McGovern's presidential team--Eagleton was his VP candidate--after it was revealed he had suffered from depression. I was 9 years old at the time--and for some reason that little incident stuck with me for years. (I was a hyper-aware kid who watched Cronkite.)
Speaking of being public about all this, 7 years ago a former editor of mine refused to let me write about my own wrastling with bipolar disorder, as he feared that the mayor and police chief and so on would not consent to be interviewed by me in the future were it known that I was a head case. I was the city hall reporter at the paper, so I understood his reasoning. I just didn't agree with it. The funny thing is after becoming very public about my situation in 2004, it hasn't caused me a lick of trouble in doing my job.
So time's have indeed changed.
Last week, I noted that the fine folks at the Treatment Advocacy Center--aka Fuller Torrey's political SWAT team--had posted a delusional item dissing the P & As for fighting to get patients out of lousy state hospitals, nursing homes and so on. I called on TAC to issue a correction, because their item failed to acknowledge that P & As sometimes fight to get state hospital beds expanded and also failed to incorporate the US Supreme Court's Olmstead ruling of 1999 into its analysis.
To date, TAC has failed to issue a correction. I pointed out the other day that if they didn't, then I would issue one for them. The correction follows:
"Recently, in a post to our blog, we at TAC attacked the P & As and failed to acknowledge that, under Supreme Court rulings, psych patients have an absolute right to freedom from state hospitals and other mental health facilities once they are stable. What can we say? We're sorry, but when a storyline fits our political agenda, we have a bad habit of ignoring context and all other countervailing evidence in order to get the word out that we think that anyone with schizophrenia or bipolar disorder needs to be forced to take massive doses of meds and, maybe, locked up too. OK, it's not a bad habit--it's the kind of delusional thinking you might find somewhere in the DSM. And, um, TAC regrets the error."
Way to go guys. I knew you could do it.
And speaking of Fuller Torrey, at some point this week I am going to make reference to, and discuss, the ideas of the other super-controversial psychiatrist in America, Thomas Szasz. He's the anti-Fuller Torrey, but also an ally of the Scientologists. All the same, his ideas are interesting and, in some cases, dead-right. But that's for another day.
Andea Yates' retrial for the murder of her five children in 2001 opens today. Yates was found guilty earlier, despite pleading insanity, but a retrial was ordered because one of the prosecution's witness lied on the stand. So here we go again. It's not clear if they'll argue she was bipolar or nailed with psychotic depression, but her defense team will argue insanity again. That's tough to make a go of in Texas where the legal bar is pretty damn high.
My own thoughts on this are that any mom would have to be in a delusional/psychotic state to kill her own children, and frankly unable to tell the difference between right and wrong. I'm not a big fan of insanity defenses and the "bipolar made me do it" syndrome, but this is one of those times when the shoe might fit.
Anyway, the Associated Press thinks it will be a test of public attitudes on mental illness. We shall see.
John McManamy has a great post on his blog about a recent go-round he had with hypomania. Like him, I get popped with it from time to time. Like him, I can feel it coming. Unlike him, I generally let it hit me and enjoy the ride, even though I know it's risky. I could end up full blown manic and have some really unpleasant shit happen.
So why run the risk? Two principle reasons are because a) I'm a writer and the creative energy that gets wrapped-up in hypomania is something I need; and, b) it's damn fun. I generally know I am headed for a spell when I start chain-smoking or need to listen to music 24/7. And that's ok. I get a lot of shit done. For example, in April and May, I wrote something like 35,000 words in this blog. That works out to about two-thirds of an average book. So there's is a definite plus-side to all this.
The downside is that hypomania often cycles into bouts of depression--not long-lived but nasty enough. The days when it used to cycle over to mania are pretty much over for me. Or let's just say it doesn't flip over to extreme mania.
The other part that's not so pleasant is that I annoy the hell out of normies when I get hypomanic--I get loud, snippy, pissy and so on. But whatever. It's kinda part of my character at this point and I get lots of work done. So I am ok with it.
I had intended on being back to posting as usual this week. But, after just kicking a gnarly flu, my personal life intervened in an unpleasant way and I had some late hours at the office. Shit happens and I ought to be back to regular posting for Friday...assuming more shit doesn't happen.
In the meantime, let me commend to you my recent post on a wild error made by the Treatment Advocacy Center in a recent blog post of theirs. I know the folks at TAC are all hungry for intellectual honesty, so I am expecting them to correct and/or clarify that post soon.
If they don't, I'll write a correction for them.
Actually, I do havea couple of quick posts to put up. They follow.
A regular reader recently commented:
"Somtimes I think that one thing that gets people out of the groove of mental illness is intellectualism. For instance, I spent almost all of my high school years in the hospital. When I finally got out for the last time, I was practically positive that no matter what I'd do, sooner or later, I'd be right back in again. But that didn't happen. It didn't happen becuase I started writing. It didn't happen becuase I went back to school. It didn't happen becuase I was so, so intent on becoming the scholar that I've always yearned to be. And so, that is the road that I have been fortunate to take. I got my writing published. I got an internship at a nice newspaper. I got into the UW Honors Program. If it wasn't for this powerful intellecutal ambition that I have, right now, I'd probably be at Western State. Sometimes I feel very blessed that I possess the mind that I have, for if it wasn't for my intellect, who knows where I would be. Has anyone expririenced that same type of thing?"
In some ways, I know I have. A great comment and congrats on both getting into college and an honors program after fighting back against all of that.
There is a lot of truth in what she wrote and that's a road I plan to go down in the near future: What worked for me.
In response to a recent post on problems with the anti-depressant Cymbalta, a reader commented:
"I took cymbalta for 10 days. My doc had me tapering off paxil while taking 30 mg. of cymbalta. I felt quite manic which got worse each day. I was restless, and couldn't keep still. And worst of all, I could not sleep. It was hell. Paxil always has worked well for me, but I decided to try the cymbalta for less side effects (sexual). Anyway, I stopped the cymbalta and went back to my usual dose of paxil. I am so very depressed and have terrible anxiety and a strange headache. Could I have withdrawal from cymbalta after only 10 days?"
And another reader replied:
"Yes. I firmly believe in (and have experienced)withdrawal syndrome, and I can say, it is worse than before better sometimes. These are powerful chemicals and should never be underestimated in what they can do our bodies and brains."
Anyone else have other ideas? My own understanding and experience is that whatever withdrawal symptoms you are going to get from a med should hit fairly soon after coming off it altogether. If the symptoms persist, then contact your doctor.
After 6 days, my flu has finally lifted. It was the worst one I have had in years and came at a time when I had to go to the office each day regardless of how I felt. With luck, it's gone for good--and I am back for good. Thanks for your patience and the kind emails and comments. I appreciate them.
There's been a spate of articles (here and here) in the British press lately about just how pervasive depression is in their society and how expensive a problem its become for the country. Bottom line is that 1 million people are on government assistance--like our SSI--for depression. That's more people than are on the dole for unemployment. Not only is the British media being honest about that, they are also carefully pointing out that anti-depressants--adopted very aggressively by Britain's National Health System in the 1990s--haven't done much to address the problem. That's a point I've been making in posts here for the better part of a year. And it's sad really. I'd much prefer to say that Prozac and its kin rock and everyone just needs to step up and swallow a handful of them. Bummer.
As I've noted elsewhere here, the Brits are clamoring to have CBT and other behavioral therapies become part of the regular treatment for depression. The evidence is that CBT, for one, can work as well as meds on depression. America, of course, is far behind the curve on this. There is no CBT lobby working the halls of Congress and state houses, after all.
As far as I know, behavioral therapies aren't a cure-all, but they are a good plan B--or plan A1. I wonder why similar honesty about what's working and what isn't hasn't erupted in America. When it comes, this country needs to be very careful about overreacting and tossing aside meds altogether--we are very all-or-nothing about medical care in this country--lest we lean too heavily on methods that seem promising but are only going to work about as well as what they replaced. Still, this kind of honesty cannot come a moment too soon.
Or whatever the hell the Full Torrey crowd is smoking over there in Alexandria, Virg. Last week, the fine folks at Torrey's Treatment Advocacy Center posted an asinine item on their blog. The post is so error-riddled that I look forward to TAC posting a correction and/or clarification on its blog.
In the post, TAC's anonymous blogger argued that the federally-chartered "P & As"--protection and advocacy systems for people with mental and physical disabilities in each state--were imposing "their own values on people who don’t have the resources to live independently. Rather than advocating to improve conditions in hospitals, boarding homes, and nursing facilities – they try to close them down."
TAC's implicit gripe is that the P & As are shutting down state hospitals, forcing the chronically mentally-ill into a world where there is no help for them and that that's at the heart of the crisis facing the mentally ill. Why TAC didn't just come out and call the P & As socialists or something is beyond me. But if TAC won't call them soft-brained, perhaps they would like to go after the US Supreme Court and President Ronald Reagan. After all, they are the pinkos behind the dynamic TAC's complaining about. Seriously.
In the mid-1980s, the Reagan administration moved to deinstitutionalize the mentally ill from state hospitals around the country. That continued a trend begun in the 1960s, when there were about 500,000 mentally-ill in hospitals. While California's governor, Reagan began shutting down hospital wards but offered the mentally ill no shelter but the streets. He repeated this disconnect as President, a move that led to the present cycle of homelessness in America. By the end of the Reagan Administration, 94,000 Americans remained locked up in state hospitals.
What's more, in 1999, the US Supreme Court ruled in the landmark Olmstead case that if the mentally ill lodged in state hospitals were clinically eligible for discharge--and indeed wanted to be out of the hospital--then the various states had the legal obligation to provide appropriate housing and social services to make that happen. The basic idea is that the states have no right to restrict the liberty of the mentally ill when there are far more humane and less-restrictive ways to treat them in the community. (I've written before at great length about the weird dynamic around deinstitutionalization as well as the Olmstead ruling and promising community-based treatments.)
TAC, of course, conveniently omits those two historical facts from its narrative, instead choosing to blame the P & As and the Bazelon Legal Center--which often works with the various P & As on legal cases--for what they see as an intolerable mess. Beyond Reagan and the SCOTUS, the reason that we have a mess in our system of care for the chronically mentally ill has more to do with massive cuts to federally-funded housing programs and to Medicaid. But the Fuller Torrey lapdogs cannot get past their single-minded obsession--one that deserves to be in the DSM--with expanding state hospitals.
It is amusing to note that, in Washington State at least, TAC might have to praise the Washington Protection & Advocacy System. In 2004, WPAS sued Washington State because the state's Department of Social and Health Services was kicking dozens and dozens of profoundly ill people out of Western State Hospital and onto the streets of Tacoma, returning female patients directly to the husbands who'd beaten them or, in one bizarre case, dumping a schizophrenic skinhead in a board and care facility (I have written about this lawsuit, as have other newspapers in Washington State). The state settled with WPAS out of court last year and this year the state legislature funded re-opening three adult psych wards at Western (that works out to about 90 beds).
I am generally not too thrilled with keeping patients in state hospitals--no matter how much more benign they are these days, the places still suck--but in this case, I support the move. It would be nice for the state to also get off its duff and use some of its billion-dollar-plus budget surplus to fund appropriate housing for those who can get out of Western (and its sister Eastern State Hospital near Spokane), partly to comply with Olmstead and also to realize the promise shown by the pilot community-housing programs the state already has in place in the Seattle area (and that save at least 50 percent on the cost of long-term hospitalization). That funding spigot will apparently be opened much more slowly. But it will be opened.
Meanwhile, back to TAC. Can you people explain to me the P & As are responsible for the mess you guys describe? Or do you want to run a correction and/or clarification to your post? If not, I'll make sure to run one for you.
GLOSSARY TERM: P & A. The Protection & Advocacy Centers are federally chartered and, in most cases, are federally funded. They are empowered to investigate state and federal programs designed to care for the mentally ill, developmentally disabled and physically disabled in state-run or financed facilities throughout the country. They speak for the people who cannot speak for themselves.
This has been a really crappy cold, and I am still drained by it, but things are on the upswing. I hope to be back at it on Monday. Besides, the fine folks at TAC keep putting up the most fascinating posts featuring the most interesting logic. I cannot wait to comment upon them.
I have a nasty cold. I am trying to keep it from becoming nastier. So I haven't the energy for posting now. Maybe later. Have fun everyone.
You may have run across a headline recently along the lines of "Prozac Prevents Suicide." The articles, and there are many of them, are in response to a study out this week that draws a connection between increased use of Prozac in the 1990s and a fairly slight decrease in the American suicide rate. What's bizarre to me is that the study was published at all, since the authors had no way of teasing out how many of the non-suicides were taking Prozac, some other drug or nothing at all--or whether it was all connected to something else. In other words, it's one of those public health linking studies which I hate so much, attempting to connect broad social variables that may not be connected at all. What's more the study, in my view, improperly analyzes suicide rate data between age groups and finds a decrease in suicide that is pretty minimal--and then draws a connection that is hard to support. It's one that other authors in the same issue of the journal point out as having certain limits.
Nonetheless, the media around the world have run wild with the storyline that Prozac saves lives. One of these days, I'd really like to teach editors and fellow reporters how to quickly digest medical studies so that they can move beyond parroting press releases and do the hard work of reporting the complexity of important social issues. They can even do this under deadline pressure!
That's the view of one researcher, likely to either be ignored or become controversial. Of course, this is an old theory from the 1960s, which argued that "bad parenting" resulted in schizophrenia. It's generally regarded as bullshit now, so I pass on the study for what it's worth. I wonder how much media play this study will get.
I ran into Sen. Gordon Smith (R-Oregon) at the NMHA conference on Friday. I knew him peripherally when I was a reporter in Portland, so I went up to him and apologized for something I had written in Jan. 2004. That was about four months after his son, Garret, had killed himself in Utah, where he was attending college.
I'd written an article about suicide and in it I had chided America for being blind to just how big a problem suicide and mental illness are in our nation, and that the utter silence on the matter in our culture was costing us lives. I briefly noted that Smith himself had yet to take to the Senate floor to say something--hell, anything--on the matter. I cringed when I wrote that about Smith. It was still very close to the event, but he's also a US Senator and has an obligation that is different from regular citizens. It's called leadership.
Smith took to the Senate floor that summer and delivered what was apparently one of the most powerful speeches given in that chamber in ages. The kind of raw personal shit you just don't hear in public very often. (Google it, if you want.) Since then, he has gotten about $75 million in funding for suicide prevention through Congress--something the feds had never really funded comprehensively previously--and written a book with his wife. It's not clear if he will be the leader in Congress on mental health issues, a role long filled by Sen. Pete Domenici (R-NM). He did play a key role in beating back Bush Administration cuts to Medicaid this budget year--and that took some guts. And, I suspect that in coming years (he's in a safe seat since he's a moderate Republican in a state where progressives and conservatives largely cancel one another out), he'll step up to the plate on a range of issues affecting mental health. He may do it publicly, he may do it behind the scenes. But, no matter what he does, no one in either party will be able to screw with him.
We've needed someone like that on our side for a long time. That's what I was telling him last week. I just didn't use those words.
I returned from Washington, D.C. Saturday night and spent Sunday recovering and catching up on other nonsense. I had much fun in DC and have many leads to pursue. I doubt that I'll post much until tomorrow. But I did give a speech, one that was far more passionate than the one I had penned in advance. Shit happens and people seemed to like it. The only problem is I don't know exactly what I said. I hope to get a transcript up on this site someday.
I do plan to do near-future posts on Sen. Gordon Smith, Rep. Patrick Kennedy and, in response to reader requests, will delve into what works/worked for me in addressing bipolar disorder. Over and out.
I am going to be in Washington, D.C. through Saturday night, so I won't be posting much, if anything, until Monday. And I'll only be approving comments sporadically. Have fun.
A study came out the other day asserting that 17 percent of college students play the dangerous game of self-injury--cutting, burning, etc. While I am a bit leery that the data came from students answering an online mental health survey at Cornell and Princeton (this makes me doubt the absolute prevalence), there is no doubt that a lot of cutting is going on in America. The question is how much was it going on 10 and 20 years ago? I have no idea.
There was a flurry of media articles and blogosphere snickering over a paper that came out in the General Archives of Psychiatry this week concerning intermittent explosive disorder. While I think that snickering at some aspects of the DSM can be great fun, I wanted to hold off until I had gotten my hands on the paper. I read the paper last night. I am now officially scratching my head in a WTF kinda way. But I'll get into that in a future post, possibly for tomorrow.
Or maybe it's a clarification. Anyway, in a May 23 post I wrote:
"In a recent post, I wrote:"I had an email exchange the other day with the lead author of the schizophrenia and violence paper. He assured me that, in terms of absolute risk, schizophrenics were not more violent than the rest of the population. He said he's troubled to see how the TAC people and others are using his results. "They know better," he wrote."
There are two errors in that graf. I wrote absolute risk. I should have written relative risk. Yep, there's a difference. Two, I not only misquoted my correspondent, but I misapplied the bad quote to the wrong point. The correspondent was not criticizing TAC.
I regret the errors."
Let me gingerly tread into the world of stats and risk once again. In terms of risk (the simple form as most of us understand it):
1-year prevalence of any violence in community residents (from a 1990 paper by Jeffrey Swanson, et al.):
With no mental disorder: 2.05% were violent
With schizophrenia: 12.69% were violent
There are differences between relative risk and absolute risk--and anyone who really wants to know the precise difference should go check the Wikipedia entry on risk, which is way too complicated to summarize here. Suffice to say, that when it comes to absolute risk the large majority of people with schizophrenia do not commit acts of violence.
Hopefully, I have it right this time. BTW, if anyone thinks risk is dicey business, look into the four meanings of the term "mean" (known as "average" to most of us).
A reader writes:
"I spent the weekend in the free-market psychosphere, Dr. (IN)sanity's crowd and it's not good for my health or my mind or my spirit, but like Roethke said, I learn by going where I have to go. Since finding this blog last week I have a place to come home to and wash off the toxic slime, your work is a godsend man, and the commenters are so smart and open and such a cut above the dogmatic and content-free jargon I see on other psych blogs, it's a privelege to be here."
Mom, are you reading this??????? Joking. But, seriously, thanks. And Roethke, who used to do his boozing about 3 miles from where I live, was/is right.
BTW, a few of you have prodded me to share more of my personal experiences, especially on what saw me through the bad years. And the good years. Wish I could. But I have to work as a reporter in the workaday world and I'd prefer to keep a certain buffer between my existence and people I need to interview on non-mental health matters. OK, I have to keep that buffer. So I might offer up some things, but not others. I won't talk about the others--for example, my experiences with...ah, nevermind--until I see a book advance. And I doubt that will happen. I can't write a convincing book proposal to save my life and there are already many good books out there on mental illness. And Jayson Blair reportedly has a bipolar book on the way. So what do I have to offer that's different? I am nobody special. Apparently, Jayson Blair is!
The fine folks at the Treatment Advocacy Center put up a blog post pointing out that not only do their homies at NAMI National get a large percentage of their funding from pharma companies--as the Philly Inquirer recently drubbed them over--but so do NMHA and the Bazelon Center. TAC claims that it doesn't. Good for you guys. So who funds you? The same Stanley Foundation that funds your founder Fuller Torrey? Some other benefactor?
BTW, it is a bit opportunistic of TAC to point this out since Torrey is the founder of NAMI, and both NMHA and, especially, the Bazelon Center have been critical of TAC. And TAC and NAMI National are in bed on the outpatient commitment issue. But, as far as I know TAC's point is accurate.
Let me be opportunistic in return: TAC describes its operations as a "lean and mean approach [that] has resulted in many successes." It's no surprise that TAC can work inexpensively. That's easy to do when your advocacy is completely one-dimensional, you pray on headline-grabbing tragedies and angle your argument towards newspapers' editorial boards and state legislators. Editorial board folks generally stopped doing the kind of skeptical thinking that leads to nuanced writing well before they got to walk away from reporting or, in many cases, copy-editing jobs and took on "the important policy issues of the day." And legislators? They lost their bullshit detectors years before running for office. (It's why they ran for office.)
But TAC's got a point. Pharma money comes with conflicts. All the same, if TAC claims it doesn't take pharma money, then can they also assure us that their are no pharma employees among its individual contributors?
Since last fall, I’ve been chipping away at questions about mental illness in children. It’s time for me to stop chipping. Something which I don’t trust is going on out there.
Yesterday, a paper came out in the Archives of General Psychiatry stating—oh, I’ll just quote from the New York Times:
” The use of potent antipsychotic drugs to treat children and adolescents for problems like aggression and mood swings increased more than fivefold from 1993 to 2002, researchers reported yesterday.The use of potent antipsychotic drugs to treat children and adolescents for problems like aggression and mood swings increased more than fivefold from 1993 to 2002, researchers reported yesterday.”
That’s disconcerting enough. And, then, this from the paper's abstract itself:
” From 2000 to 2002, the number of visits that included antipsychotic treatment was significantly higher for male youth (1913 visits per 100 000 population) than for female youth (739 visits per 100 000 population), and for white non-Hispanic youth (1515 visits per 100 000 population) than for youth of other racial or ethnic groups (426 visits per 100 000 population). Overall, 9.2% of mental health visits and 18.3% of visits to psychiatrists included antipsychotic treatment. From 2000 to 2002, 92.3% of visits with prescription of an antipsychotic included a second-generation medication. Mental health visits with prescription of an antipsychotic included patients with diagnoses of disruptive behavior disorders (37.8%), mood disorders (31.8%), pervasive developmental disorders or mental retardation (17.3%), and psychotic disorders (14.2%).”
Male youths getting anti-psychotics twice as often as female youths. White youths getting antipsychotics almost 4 times (!) as often as non-white youths. A third of the anti-psychotics going to youths with behavior disorders and another third going to kids with mood disorders (speculating before getting the full paper: that’s shorthand for bipolar disorder).
Anything jump out at you there? Or do you buy that white male youths are that fucked up these days? I don’t buy it a bit. And I am so frustrated by the broader question of anti-psychotics in children and teens that I cannot even begin to address my concern about its extreme prevalence in white males. I’m sure there are many things driving this besides straight-up mental illness.
OK, I’ll just say it: There is a lot of pressure within white culture to have behaviorally conforming (“normal”) kids (This is very true in Asian cultures as well). I’ll leave it at that for now. I want to read the entire paper before I write things that will piss-off a lot of people.
I will say this: what came out today was hardly news to those who pay attention to the literature. Researchers at Vanderbilt University have been making similar assertions for at least a year, for example. What’s more the data used in the article stops at 2002. I wouldn’t be shocked if the rate of anti-psychotic use among youth is up even more from 2002 to 2005, given that annual US sales of anti-psychotics have gone from about $6 billion to $10 billion in that time.
I know there are parents out there who stoutly defend the use of anti-psychotics for their children. That’s fine. Your kids. Their blood sugar.
But somewhere in all of this news I smell a rat.
And all of this social pressure for behavioral conformity is what concerns me so much about the rhetoric around forced outpatient commitment. You can apply it to wildly psychotic street schizophrenics all you want, if that’s your thing (The Los Angeles Times won a Pulitzer a few years ago for making that essential argument Stupid Pulitzer jury!).
But how far are we away from a day when, for example, a school informs a parent that their child is acting out at school—maybe getting in school yard fights!—and that, by district policy, their child must be given Risperdal before they can return to school? (In Scotland, the government wants to inspect the contents of students’ lunches to remove “bad food.”) If the parents refuse to comply, then the district will get a court order forcing the child into outpatient treatment because as we all know the mentally-ill are so damn dangerous.
Having worked in one of the largest school districts in the country and having spent a good chunk of my adult life poking into the workings of government bureaucracies, I wouldn’t be shocked if that’s already happened.
Or am I being a bit too paranoid there?
Once again, the US Supreme Court is to hear a case of a schizophrenic on death row. America's death rows are filled with schizophrenics and other mentally-ill. SCOTUS ruled about 20 years ago that it was unconstitutional to put them to death, but left the details of defining "insanity" and "competent" to the states. Nice work. Bottom line: people should be punished for their crimes, sane or not. But to execute the mentally-ill goes way beyond the standard of cruel and unusual punishment to completely outrageous and inhumane. I wonder what TAC thinks of matters like these. Knowing them, they'd want the patient medicated into sanity, so that they can then be executed and then use it as an object lesson for outpatient commitment for everyone else. OK, I'm being cynical. But, hell, Texas and Arkansas have executed mentally-ill people in recent years. Anyway, this is one of those messes that the supremes should clean up. Bet they don't.
In other news, a British court has found Intel liable for causing an employee's depression and subsequent unemployment for forcing her to work 20 hours and more of overtime each week during a cost-cutting spree. Serves them right.
There’s been another trickle of new readers in the last few days. Howdy. Just so you know, I am always right. Kidding. In all seriousness, blogging about the mental health world is, at best, an evolving art form. At least it is in my shaky hands. All the same, we’ve got rules around here: the mental health game is all about patients. Theirs are the only outcomes that matter. Living half-lives all doped up and muddling through existence is not a good outcome. It’s as big a tragedy as 24/7 psychosis. I know that’s not what NAMI told you, but I’ve been in this game as a patient longer than some of the NAMI people have been taking pharma money. Which is to say, I’ve been bipolar for 17 years (diagnosed) and I have seen every flavor of medication and heard every promise about how mental health treatment in this country is on the verge of offering spectacular seamless treatment for patients, total mainstreaming into the economy and no more social and employment discrimination for patients. I have also seen all of these promises go unmet, be they driven by more permissive thinking around mental illnesses or by the paternalistic wing of the “movement.” That pisses me off ‘cuz promises are for keeping.
But I am one of those bipolars who has made it pretty much back all the way, both playing by the rules and thumbing my nose at the rulemakers. I’ve taken my meds even when they’ve taken more from me than I from them. I’ve paid my dues. And that’s where my bias comes from. Have a nice day.
As I mentioned the other day, I had to knock down my recent, short-lived bout of depression with 50 mgs. of Seroquel. It wasn’t pretty and I was so fogged that I couldn’t work the next day, much less stay awake. I slept 21 hours out of 24. Ick. Better than the icky shit that was in my head, however. Interestingly, I am not the only one amongst you who now uses Seroquel the way antipsychotics used to be used with bipolars 10 years ago—which is to say, ever so often to knock down the bad shit. I won’t go back to it as an everyday med, however. I can only tolerate so many nuclear weapons in my daily life.
As I posted yesterday, keep those comments coming about experiences with Seroquel and Abilify. If you had positive outcomes, by your reckoning, then what side effects did you or your kid run into. And how the hell did you pay for that spendy stuff?
There was another opinion piece in the WashPo on the murderers in Virginia, written by the paper's metro columnist. Man, you know shit is getting serious when the metro columnist breaks out the pen. As usual, it's armchair thinking about how families ought to be able to force patients into treatment, calling the present situation "a bind for families." Um, what about the bind for patients? Oh wait, I'd better not mention that the patient will end up impotent, obese, cognitively impaired and so on. That's what American society wants. There is nothing better we can offer patients we deem to be ill, therefore there is no reason to even tip your hat to the notion about the immense "bind" patients who play by the rules find themselves in. Anything else is just "hippie" talk. Right, Fuller Torrey and TAC?
And, um, guys: Anyone wonder why the Post has seen fit to print 4 opinion pieces on all of this? Or is it just a slow news cycle in DC? Talk about beating a dead horse into the ground.
Several people have already suggested in comments that we contact about.com and let them know we will no longer read their mental health sites, especially the bipolar one, if they continue to censor balanced articles by patients reporting ill effects of meds. Excellent idea. I wonder if about.com couldn't be encouraged to also repost Andy Behrman's article and issue a public apology. I also wonder if some resourceful readers couldn't email reporters at a few key papers and bring this whole business to their attention. Since it involves a New York Times company, it's almost news due to that fact alone. The Village Voice and the New York Observer occasionally relish reporting news about the Times. I think the Observer has a dedicated media reporter. See what happens.
Here's why I cannot do any of that myself: I am a reporter and I am old-school enough to think that I should only influence others' coverage of issues by what I write for publication. Hell, I find it sorta ticklish ethically to even be pointing out these avenues to you all, but the whole censorship thing with Andy really pisses me off.
BTW, there are some good media blogs out there and perhaps they would like to know about this situation. Jeff Jarvis writes a good one. I just point this out for what it's worth to anyone.
SITE NOTES
I think Andy Behrman is flattered by the concern you have all shown. I know I am. As a small measure of payback, I am soon going to configure some outside software that will auto-post comments while also filtering out the latest Russian teen porn spam. I’d prefer to knock off moderating comments.
I won't be doing this for at least a week, however, as I have other more pressing responsibilities the first part of the week. Then, I will be out of town at the NMHA national convention in Washington, D.C. I may or may not do posts from there. Frankly, my time is better served talking to people about what the hell is going on in the mental health world and doing whatever share of partying falls my way in DC. Because you can still smoke in bars there! Until Jan. 1 at any rate.
In other news, Andy has agreed to write for this here blog from time-to-time. As has Lizzie Simon, who wrote Detour. The idea is if either has something they want to get off their chests about the mental health world, they can do so here without having their thoughts limited according to advertisers' needs. 'Cuz I don't have any of those (more on that in a moment). I don't know how often they will write. They are both busy, so it's simply flattering that they'd even post something here every now and then.
What do you all think about me extending the same offer to Pete Earley? I'm serious. I think it's important that there be an outlet on the net that can foster intelligent conversation about the future of the mental health world since the mainstream media--hell, even alleged thought-leader types of magazines--has completely failed in its responsibility there. I ain't just talking about about.com.
A few people have asked recently whether I would accept pharma ads on this site, even the teensy Google Adwords stuff. My general answer is No. That is also my answer regarding ads for alternative therapies, plaintiffs attorneys and the like. There are case-by-case exceptions, of course. For example, I would take ads for Lamictal and Lithium and other mood stabilizers. And I might consider an anti-depressant ad--but, then again, I might not. I won't take ads for any atypical anti-psychotic or ADHD drug. I would take ads from online pharmacies. And so on.
All of which is a long-winded way of pointing out that the time has come for me to cover some of the expenses of this site, which aren't much if you disregard the 100 hours or so a month of my free time that goes into doing the writin'. So don't be surprised if you start seeing Google Adwords strips and "buy this book" sorts of things in the near-future.
I may start by putting out the dreaded PayPal tip jar. Or is that lame? You tell me. I don't even have a proper desk around here and my back would be ever so grateful if I did. Besides, I’ve got to do something about the site design and layout.
I almost never post on Sunday, but there's been enough feedback to the recent posts on Abilify to lead me to ask you all to post to comments/email me about personal experiences (good, bad and mixed) with Abilify. And I want to hear from Seroquel users, too. (For newer readers, I'll likely repost some of my thoughts on Seroquel which were posted last year.)
Wny? One smart commenter pointed out that Abilify is being positioned to be the new Prozac--good for whatever ails you. I agree with that assessment, but feel that it is equally true of Seroquel. My hunch is with Zyprexa sales topping out and declining (Eli Lilly admits that's the future in their own SEC filings) that Abilify and Seroquel will duke it out for atypical anti-psychotic domination just like on reality TV. Both drugs are approved for use in schizophrenia and short-term mania. Seroquel will likely be licensed for use in bipolar depression sometime this year. That will open the door to its being marketed as the new Lithium, the gold-standard mood stabilizer. Or the new Prozac. It may well be licensed for long-term maintenance of bipolar disorder. Abilify's maker is already making claims of its effectiveness as a maintenance drug for bipolar disorder. Zyprexa has failed in the minds of many in the psych world as the preeminent bipolar maintenance med, principally due to its gnarly side effect profile.
So how gnarly are the side effects profiles of Seroquel and Abilify? How positive are the outcomes for patients? How's the cost/benefit tradeoff? Let's hear it people.
Also, those of you who work in the mental health world, let's hear your perspectives, even if you must resort to posting anonymously.
It's a good time to sift through the evidence on these meds--anedotal, clinical and statistical. Thanks for your help.
Some may remember that I recently suggested to the Treatment Advocacy Center that they not only catalog what they deem "preventable tragedies"--violence involving the mentally-ill--but that they also catalog injuries and deaths related to psych meds. Preventable tragedies go in both directions in the mental health world, right?
Of course, the fine folks at TAC didn't respond. After all, how would it help their agenda if they were honest that their idea of "treatment" sometimes carried problems of its own? Silly me for suggesting it.
So now I am suggesting it again, only this time to readers of this blog. Does anyone else think it might be useful to catalog the people who have died or been injured or debilitated at the hands of psych meds? Does anyone else think we could somehow pull together names, ages, places, injuries, meds involved and put it into a useful database?
Let me know.
Right? Right now, it has nailed me to the ground. Had to come home early yesterday and take Seroquel--ick--in an attempt to fog it out of my brain. I slept 15 hours. My back hurts and I had all the usual Seroquel-induced bad dreams. And, now, I cannot seem to wake up.
Nasty shit, this depression. Nasty shit, these meds.
The fine folks at the Treatment Advocacy Center simply cannot contain themselves. They are now likening the deaths of people at the hands of the mentally-ill to war. Why do I say this? On Memorial Day, TAC posted the following on its blog entitled “Memorial Day”:
”Those who took their own lives. Those who are missing in action in a different way – homeless on our streets or lost in their own homes. Those who are a different kind of prisoner of war – a war in their minds, imprisoned in our jails. – a war in their minds, imprisoned in our jails. And those who were caught in the crossfire – law enforcement officers, family members, mental health professionals, friends.”
Sorry, TAC, but Memorial Day is for remembrance of soldiers, sailors, airmen and marines killed in service to their country. People like Lt. Cmdr. Robert Chalmers Winters, a Naval aviator and a hero on Dec. 7, 1941. He was a graduate of the Naval Academy, father of two young girls and was killed in action in May 1942 over the Pacific. Also, he was my grandfather (and a very interesting bon vivant to boot).
If TAC wants a holiday in which to wrap its advocacy, may I suggest Easter? After all, millions of people with mental illnesses have survived the worst and somehow resurrected their lives. I cannot think of a more fitting memorial to them and the people who tried to help them.
TAC, leave my grandfather out of this. Or I am going to turn my mom loose on you.
A couple of weeks ago, a friend of mine told me that I’d been acting crabby and seemed down. I’m fine, I said. Last week, another friend told me that I seemed a bit shaky. I’m fine, I said. Yesterday, another friend saw me walking to work and told me that I looked beaten-up. I’m not feeling so great, I said. A few hours later, I e-mailed my boss and told him I was depressed—nothing bad or life threatening. Just the usual dysphoria I get hit with late in the spring year whether I need it or not. It clears soon enough. As this go-round will.
The standard response in our society these days would be: Dawdy, you need to see your doctor and take an anti-depressant. When I was younger I would’ve gone crawling to my psych doc and he would’ve switched me from one anti-depressant to another or upped the dose on my current one. The sad thing was that that approach never bore fruit, and led to me being on 80 mgs. of Prozac a day at one point (it almost killed me but that’s another story).
So what am I doing about this here in 2006? Not calling up my doc and asking for an anti-depressant, which I can then take for months and months and years and years because that’s what America expects of us these days. We have to feel ship-shape at all times or our nation won’t meet its productivity goals. But those same anti-depressants never prevent future bouts of depression, and they have all sorts of ugly side-effects for me and my co-pay will be about $100 a month—money I don’t have. So what exactly would be my incentive to spend $1,200 a year on meds that don’t work much better for me than a standard mood-stabilizer (Lamictal, in my case)—and give me headaches, make my heart race and render me impotent? My incentive is zero.
My current recipe is to continue taking Lamictal—it has mild anti-depressant qualities—and supplement that with 1 mg. of Ativan a day when I feel it is necessary. It’s been necessary lately and I’m OK with that for now. (I don’t take the Ativan every day, for those of you who care.) If things don’t cycle out of this fairly minor depression in a few weeks, then I’ll talk to my doc and we can evaluate the situation. Hope I don’t have to go there. Probably won’t.
I know some of you appreciated my explanation of what went down between Andy Behrman and about.com. His article was well-written and on-point, and about.com does have some articles critical of the side-effects of psych meds on its site. So, I can only conclude that Behrman was censored by about.com because he was implicitly dinging on a major advertiser (the makers of Abilify) at about.com.
Being a writer myself, I know how offended he must feel. Although my work has never been censored, I know that there are people in the mental health world who would like me to stop saying harsh things about psych meds (once again, people, I am pro-meds—provided that they actually work). I know they would like me to bow to the family-led mental health movement and adopt their notions of suicide survivorship and always praise meds even when the news on that front is provably bad.
Sorry. Not going to happen here.
And as for Behrman: I hope he never writes for about.com again, unless they are paying him scads of money (I don’t think they are). If he wants an outlet for writing about mental health matters, I’d be happy to post his prose here from time to time. I don’t have money, but I do offer journalistic freedom.