Friendship in light of history

My wife needs a blog name, and I keep trying to give her one but they never stick. I’m going to try Agnes. I love that name, but don’t think I’d give it to an actual kid, so I’ll give it to my wife instead. Old-lady names are great (I don’t mean that at all disparagingly).

I’ve been thinking some lately about my current social situation. For so many people, parenthood marks a dramatic change in social contacts, and it did for me as well. For me, this social shift may have been even more marked, because becoming a mom also correlated closely in time with finishing school (finally) , both Agnes and I starting new jobs, and shifting our religious community to one closer to home. My school friends have almost all moved on, and we’ve found it nearly impossible to keep up with our old synagogue friends who live impractically far away. We barely keep up with the friends who live a 10 minute walk away.

Atypical withdrawal

I received an interesting comment on my last thread, and started to write a long comment in response, so I decided instead to add it as a whole post. Szrecovery wrote:

“It’s true about the atypical antipsychotics. That there is no withdrawal. You can’t get addicted to antipsychotics. If you feel something when you are coming off, it’s symptoms of the illness, not from the drugs. I have Schizophrenia, and am on atypicals, and there is no way you can get addicted to antipsychotics. If there was, the body would develop a tolerance to the drugs. Meaning you would need more and more to get the same effect. And that does not happen. It is true, however, that with each psychotic episode, you will need more and more medication to stabilize the next time. Ask any psychiatrist, and they would tell you the same thing.”

In reality, principled studies of withdrawal for antipsychotics have not been done, and it is much more convenient to blame “underlying symptoms” than to admit the drugs may have caused problems. Psychiatrists also insisted that there was no withdrawal for benzos when they were first prescribed, and that turned out to be patently false.

At this same schizophrenia conference there was evidence presented that the atypicals cause the same upregulation in dopamine receptors that has been described for the older drugs. If the drugs are taken away, that upregulation persists. There was much consternation and upset among the psychiatrists in the audience about this finding, precisely because this is the sort of effect that can lead to a “discontinuation syndrome” or withdrawal, and they would much rather believe there is no such thing.

I’ve written a bit about my experience with zyprexa, but I haven’t written extensively about my withdrawal from the drug, but let me assure you, it was pure hell and involved symptoms I had never before had in my life, and thus couldn’t have been part of my “underlying illness.” I had horrible pounding heart palpitations, disabling tremors (I had trouble holding a fork to eat), and panic attacks (I’d never had panic attacks before, my anxiety was much more run-of-the-mill). All of these things were directly precipitated by zyprexa withdrawal, and even my psychiatrist agreed they were caused by removing the drug. I don’t know what to call that if not withdrawal, especially since my “symptoms” got better, not worse, once my withdrawal symptoms finally abated four to six months later. The only relief my psychiatrist offered me was to reinstate the drug, but even she acknowledged it was a physical dependence prompting her to offer to reinstate. For new readers, my withdrawal was done under medical supervision, and the 2 month taper advised for zyprexa was vastly too fast. I withdrew from remaining drugs over 4-6 months each. They were all hard, but zyprexa was the worst.

Szrecovery states correctly that most psychiatrists would tell me there was no real withdrawal from atypicals. It may not be a full controlled scientific study, but I absolutely know from my own experience that withdrawal (from zyprexa at least) is very real. I would love to see a real study of withdrawal out there. We need science to guide safe withdrawal, and too many psychiatrists really truly believe that all bad things that happen after a drug is removed are the “underlying illness.” Since most of them are unwilling to supervise drug removal, most patients who go off of drugs do it on their own. The medical world doesn’t know how we experience withdrawal, or that some of us might be fine afterwards.

To be clear, I’m not saying antipsychotics don’t have their place. It is just a much more severely restricted place than most doctors would have you believe. I firmly believe that most psych drugs should be a treatment of last resort, and that CBT, therapy, and just hanging it there and seeing if you start to feel better (most depressions lift with time), are much more reasonable approaches. I think this may even be true for all but the most severe and dangerous cases of schizophrenia, and that even some people with active schizophrenia symptoms may well be able to learn to live well off of meds. I wish you the best and welcome the conversation, szrecovery, but there is a lot that the psychiatrists simply don’t know.

Undercover

Some time ago I attended a big medical conference about Schizophrenia for work. I am not a clinician, but I have done some work relevant to Schizophrenia and was invited to attend. I was ambivalent about the whole thing and felt a bit like I was going undercover.

As I was listening to the presentations and visiting posters, I saw all sorts of issues that were not being addressed at all. At first, I kept my mouth shut completely. Somehow I felt like if I opened my mouth, a giant spotlight would turn on and blink “This one!! This one here!! She’s not taking her Zyprexa!!.” But soon I found my voice. I quickly realized that my credentials, background and delivery were such that I could ask questions and they would be answered. I started to ask the questions that no one else was asking.

In one presentation about high relapse rates for subjects after controlled withdrawl from atypicals, I asked about the speed of withdrawal. The researcher assured me it was “very slow.” When I pressed on exactly what “very slow” meant, it turned out to be two weeks to one month. When I asked if what they were interpreting as relapse may have actually been withdrawal, he assured me that there is not a true withdrawal for antipsychotics. I didn’t get very far with him, though to his credit, he was suggesting the possibility of reduction or withdrawal of medication for some folks, since his subjects who were off drugs had much better employment results.

At one poster a researcher was trying to link “poor insight” (i.e. not believing you are sick) to worse outcomes (there was lots of work along these lines, which was quite disturbing in and of itself). Trouble is, this work was using the number of days in hospital as a measure of functioning, and the subjects with “poor insight” actually had many fewer days in hospital. The presenter had lots of answers for why this must be. Subjects with “poor insight” were in denial so they didn’t go to the hospital when they needed to. Subjects with “good insight” went to the hospital early because they knew when they would have a problem. Those reasons are somewhat reasonable, but he wasn’t seeing the most obvious answer. I asked him if he thought that maybe, just maybe, some of the subjects with “poor insight” were right. Maybe some of them actually were fine. He stumbled a bit, looked a bit confused, but then stammered, “You know, I guess we haven’t ruled that out.”

I also had side conversations with a few clinicians who told me they really believe rates of recovery are better than reported, because they think most subjects who “drop out” of clinical studies, do so because they are actually fine. I also saw one or two great presentations of positive results for CBT in schizophrenia.

Overall, I came away deeply disturbed, but also strangely encouraged. I wasn’t encouraged by the state of the field by any stretch. For most of the conference, one person would get up to speak and say “We have no treatments. We don’t know what’s going on with schizophrenia. The treatments are horrible” and then the next person would get up and say “But none of them will take their meds. We need to figure out how to make them take their meds!!.” No one but me seemed to realize the deep irony there. I think the good thing that I came away with was a realization that I could speak, and that some of them would listen, at least a little. Don’t get me wrong, I didn’t change any minds. But maybe sometime down the line, I will.

Doubt

These last few weeks, OK, really the entire summer, have been challenging around here. Nothing big; we simply overbooked. My wife and I have both been in and out of town for work trips (enjoyable, but tiring), and in between we’ve had at least 4 rounds of friend/family visits. I also had two big deadlines in July. It’s all really good stuff, but we’re stretched and tired, and neither of us have been sleeping quite enough. During the last week of July, I was solo-parenting, while on a big deadline, just before I was going to leave town for several weeks in August. The week actually went fine, great even. The work got done. I got time with my daughter before my long trip. But I also shorted myself on sleep by at least an hour each night.

Once past my deadline on Friday, I started thinking about my trip, which was only about 70 miles from home, and got it into my head that I wanted to bike to the institute where I am now. I really wanted to have my bike here with me, but it was going to be nearly impossible to take the bike on the bus. Instead I decided to take the bike-friendly commuter train as far out as possible, and then ride the last 35 miles. I bike every single day for work and errands, but I’d never done a ride that long. Accomplishing this required rustling up some panniers to borrow from a neighbor, purchasing some rain gear, a pump and groceries, giving my bike a much needed cleaning and oiling (and laying on of hands…I wasn’t completely convinced of its ability to make the trip), and packing, culling, and repacking my junk into the panniers. It was a lot to do during the 30-ish hours that both my wife and I were home, but it did get done, and my wife, bless her, though it was a great idea and was all for helping me get everything together. She could have been annoyed that I made a big project during our last day together for some time, but instead, she jumped right in and helped me troubleshoot and plan.

The ride was extremely enjoyable. The weather was beautiful. The bike held up fine. As I sailed down the quiet backroads I found myself wondering why I had never done this before. It was a wonderful feeling of independence and empowerment; I had everything I needed on my one little bike, alone with my thoughts as I sailed through the countryside.

But on the night before I left, as I went out to buy a rain jacket, a portable bike pump, and snacks for the road, a bit short on sleep and excited over my impending adventure, I had a sudden stab of panic. There I was, impulsively deciding to bike a long distance, alone, on a rather rickety bike, with hardly any time to prepare, and then I went off and spent a bunch of money (I should clarify, that “a bunch” of money in our house is defined as anything more than $30. We are extremely frugal). Was I being “bipolar”?

Pusher

I recently requested records from my early treatment.  Much of the doctors’ version of the timeline and notes were similar what I recalled, but several things surprised me.  In particular, I hadn’t recalled how relentlessly my psychiatrist in college (who I started seeing about a year after diagnosis) pushed zyprexa, and what he was pushing it for…anxiety.  It doesn’t surprise me that this was in 1999 and 2000, just the time when lilly is getting in trouble for big time off label marketing for, among other things…anxiety.  

After I’d been seeing this doctor, who I’ll call Dr. Happy, for about a year, he started offering me zyprexa for my lingering anxiety, much of it triggered by performances (I was a musician).  I’d been on and off of xanax and klonopin, and at the time had xanax available for “emergencies” that I avoided taking, because believe it or not, I generally tried to avoid taking drugs, even advil.  You wouldn’t know it considering where I ended up.  I could get pretty darn anxious, but…Zyprexa…how in the world did he justify pulling out an antipsychotic with a hideous side effects profile, even considering what what they knew at the time?  For two complete years, at every single visit, Dr. Happy offered me zyprexa.  He insisted I take a sample bottle home with me just in case, and frequently reminded me that I could take it PRN (i.e. as needed, who prescribes zyprexa PRN??) in various stressful situations (e.g. finals, recital, exams…yeah…zyprexa before an exam…I’m sure I would have done great).  For two complete years I refused.  I really felt the three meds I was on were enough, and that I could muscle through.  And  I did muscle through fine.  I was a worrywart but my grades were great, I was successfully working on two degrees, I had close friends and could maintain reasonable relationships.  After two complete years of saying no, one day I finally said yes.  One thing that struck me was that in the records, I don’t seem any more stressed at that point than all the times I said no.  Maybe less.  I think I just finally gave up.  Even Dr. Happy’s notes say I was only mildly to moderately anxious.  Then why the big guns?  

Absolution

My regrets for the long absence, but with a kid to keep track of, several looming work deadlines and conferences coming down the pike (for both of us, which also means single parenting time), I’m going to refrain from promising to do better.

I have written in other posts that I am hoping to carry our families’ second child.  What I haven’t written is that we have started actively trying to get pregnant.  It has been hard.  Even getting to the point where we can try at all has been hard.  When I started this blog, I decided it would not be another yet lesbian TTC (trying to conceive) blog (there are lots of great ones out there, but I’m not going to link for reasons of anonymity).  What I didn’t expect is that my feelings and thoughts about (ex-)diagnosis and medication would get so tied up in my success or failure at achieving pregnancy. 

Bipolar Over-awareness Week

 

In response to some recent research on bipolar over-diagnosis, there have been a few posts around about diagnosis stories and a call from CL Psych for Bipolar Over-awareness Week.  My own diagnosis story was a serious case of bipolar over-awareness.

When I recently looked over my records from my early diagnosis, I was surprised to read that my presenting complaint was an inability to regulate my emotions.  I cried very easily, and had difficulty controlling my tears for long enough not to cry publicly.  I remember how frustrating that was, how embarrassing to cry in front of my coworkers, boss and professors.  I’d had this problem as long as I could remember, and it seemed like if I hadn’t grown out of it by 20, there must be something really wrong.  Somehow, in the intervening years, during which I viewed my entire life through a bipolar lens, I forgot that this was the problem that took me through the door of the HMO mental health clinic.  On my first visit I was offered an anti-depressant.  I declined. I was then offered monthly psychotherapy.  At two or three subsequent “psychotherapy” visits I was primarily pressured to take anti-depressants and declined.  

Here is where the story gets murky, and where I have trouble parsing the course of events that spring.

Fate of gay teens in the SSRI-era?

I’ve had several posts bouncing around in my head this week, but it can be hard to find the time to flesh them out.  I’m impressed with those of you who manage to post every day.  

A couple weeks ago Philip posted a discussion of this piece by Richard Friedman, discussing the impact of early psychiatric diagnosis and medication on development.  The article includes an example of a young woman who had struggled with a low sex drive, and had never been told this is a common effect of SSRIs, which she took from her early teens.  She just thought she was defective.

This got me thinking that the impact of meds on sexual development might be particularly important for queer teenagers and young adults.  It is really hard to come out, even these days.  A two to six-fold increase in the rate of the suicide attempts for gay teens (compared to controls) is often reported. If we take these stats at face value, and gay teens are more likely to kill themselves, I’m guessing they’re more likely to end up in psychological or psychiatric treatment as teens.  If I’m right, then gay teens are probably more likely to take SSRIs or other psych drugs, and thus more likely to experience the side effects of these drugs.  I’m also guessing that shutting down sexuality at that point might feel like relief.  But at what cost?  I was on SSRIs in my early 20s, and they absolutely shut me down sexually.  I felt it as a relief, at least initially, but I had also already had time to establish my identity as a lesbian by that point, and eventually I came to my senses and got off of them.  What if I had gone on SSRIs in high school when I had only just begun to understand my identity as a lesbian?  

Difficulties with my family over my sexuality were a huge component of what pulled me into the psychiatric system at age 20.  Not once did any doctor or psychologist in my early treatment ask me about how I was coping with coming out, how my family had reacted.  It was much easier to diagnose me than to put together that I had just lost all of my family support, both financial and personal, and that maybe, just maybe, this was contributing to my emotional state.  I was fiercely protective of my family, and even if someone had tried, I might not have accepted that interpretation.   But my medical records make it abundantly clear that no one even tried to put two and two together.  It was easier to hand me some Depakote and send me on my way.  

Second night

My wife and I went to a second night passover seder on Sunday with close friends.  At one point in the evening, as we were listing the biblical plagues, we were asked us to take a moment to list additional plagues present in the world today, removing a drop of wine from our cups for each.  The obvious things were mentioned.  War.  Global Warming.  I couldn’t think of anything to say aloud, because the only plague I could think of was rampant overmedication, particularly of children.  I sat there thinking foster kids, medicated as a matter of course, thinking of kids diagnosed ADD because they have energy and are bored at school.  I know it is more complicated than this.  I know many people have profound and seemingly intractable problems and meds seem like a way out.  But I fear for an entire generation that has had its feelings medicated away since childhood, a generation that has been taught that sadness and anger are illnesses.  This was the only plague I could think of, and it was one I could not discuss aloud.  I removed an extra drop of wine from my cup and said something obvious, probably about the environment.

We are close to these friends, well on our way to becoming more family than friends.  But they are friends we made as parents and have only known post-diagnosis.  One of these friends struggles mightily with depression, and credits meds for her current quality of life.  Another is a therapist.  Another works in a social services setting with the mentally ill.  All have a deep respect for the people they work with,  but my experience and perspective would fall outside their biopsychiatric framework.  

When I believed that I was “bipolar,” I told anyone and everyone, whenever it seemed even vaguely relevant.  I claimed I was fighting “stigma,” but I think I actually wore my diagnosis as a bit of a badge of honor.  Now that I see myself as well, and the world sees me as well, I find it much harder to speak up.  Sure, I’ll express skepticism when yet another kindergarten teacher waxes eloquent on how to diagnose and medicate everything under the sun, gently reminding her she’s not a doctor.  I’ll offer unflinching support and a truly empathetic ear when a friend is struggling.  But I find myself confused about how much of my own experience to offer.  

If I had commented aloud at the seder, I would have probably hurt my friend and outed myself to a room full of people who don’t know my history.  A thousand conclusions would have been jumped to in a context where I couldn’t have answered them.  I know this was true last night, but it’s starting to feel like rationalization, like I have an obligation to do more.  I got out.  I’m one of the lucky ones.  Fading into the woodwork seems cowardly.  On the other hand, haven’t I earned a break?

The place where this doesn’t feel like rationalization is with regard to my kid (or later, hopefully, kids).  I am doing everything I can to protect our child(ren) from the damage of my label (see post below).  In this context, the fewer people that know, the better.  I wish it were none.  My wife says that time is the answer, that several years down the road, it will be easier for me to really believe, deep down, that I am truly healthy and from that space it may be easier to speak, and kids will be bigger, so perhaps speaking out would be less dangerous.  

Next Generation

One of my worries as I extract myself from the years of misdiagnosis is how my label might impact our children.  My wife gave birth to our first daughter, so she is somewhat protected from any claims of genetic tendency towards “mental illness.”  However, she is also a very intense, very energetic and a bit of a handfull.  We love this about her, and handle her well, but I do worry that teachers down the line might not, and pressure to label will start.  If a teacher got wind of my history, you’d better believe they’d push even harder, and that would be with some level of genetic “protection” since I bear no biological relation to her.  We are already careful not to talk about this in front of our daughter, and intend never to mention anything to school, but information is slippery.  It gets out when you least expect it, sometimes by circuitous routes.    

I hope to give birth to our second, who won’t be at all protected.  Schools and doctors are quick to jump on any evidence of “mental illness” (and indeed screenings are now sometimes mandated).  I worry a doctor with knowledge of my history will assume that any genetic child of mine is at risk and at the first sign of any emotional distress, will refer them for psychological evaluation.  I realize we would not have to take such a consultation, at least theoretically.  But once notes are made in a medical or school record, they never go away.  That child would be marked and we as parents would be seen as negligent and “resisting treatment,” particularly given my history.  

Several weeks ago, my wife and I watched “The medicated child” 60 minutes episode, and were deeply disturbed.  She said “Sometimes when we talk about this, I figure your concerns are somewhat justified but that you are probably tilting at windmills.  After that show, I’m less sure.”  (and yes, with that comment she named this blog).  I do hope that I am seeing threats to my child(ren) where none exist.  But my wife has said that she often wishes these worrisome insights didn’t so often have the ring of truth.  In the meantime, we probably will be switching to a new family doctor, one who does not have access to my records or knowledge of my history.  Paranoid?  Maybe.  But if there’s a move I can make now to protect our kid(s), I’d be stupid not to take it.