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It worked.

I got a positive pregnancy test this morning.

1 1/2 years of acupuncture.  4 tries.  10 frozen sperm vials.  G-d I hope it sticks.

It is extremely early.  My period would be due tomorrow.

Even if I lose it, this is progress.  My eggs work.  Maybe I really will carry our second child.

Laughter

[NB:  I found this tidbit of writing from mid-tegretol withdrawal in Feb 2006.  At that point, I’d gotten off of zyprexa and klonopin, and was still on Lamictal.  It is hard to believe 2 1/2 years have passed since then]

 

 

Sometimes I find a piece of myself I didn’t even know I lost.

 

I’m down to 200mg of Tegretol.  Down from  the 1000mg I’ve been on since October of 1998–that’s about 7 1/2 years.  I’ve been tapering down since mid november. 

 

Over the last month or so, I’ve noticed that I laugh more.  When we watched Garden State a couple weeks ago, there was a scene where the main character is wearing a shirt made out of fabric with the same design as the wallpaper in a really overdecorated bathroom.  I started giggling and I couldn’t stop.  I would sort of stop and then I’d think about the deadpan look on his face and I’d be off again.  I felt like the laugh was just bubbling up out of me, and there was so much more of it there.  Then that would get Agnes started, which would make me laugh harder.

 

I remember laughing like that before–when I was young.  I thought I grew out of it.  Everyone gets more staid as they age. 

 

I don’t think I’ve laughed like that in 7 1/2 years.

 

Bootstraps

One of the major themes when apologists for the current system diagnosis and treatment get going is that people struggling with mental illness cannot be expected to just “pull themselves up by their bootstraps,” that you can’t just “decide” to get better. Back when I believed in my diagnosis, I would take deep offense to even slight suggestions that I should just “buck up.”

But what if you can? In some ways that’s exactly what I did. I also believe that I was misdiagnosed, and maybe that’s an important point. Maybe if I was “really” mentally ill, I wouldn’t have been able to get to those bootstraps. I don’t believe I ever met criteria for bipolar disorder, even by a generous reading of the DSM-IV, but I certainly met criteria for depression. I’ve had times when I couldn’t get out of bed, when my life felt empty and meaningless. Who hasn’t? What I’m getting at here is that even though I was misdiagnosed (and have significant doubts about diagnostic practices in general), I wasn’t necessarily substantively different than your average semi-functioning patient seeking out mental health care. Well, maybe I was substantively different in one way. I’m god-awful stubborn.

Continue Reading »

Keep Away

I recently spoke with a doctor who founded and runs a clinic specifically for women who are or want to be pregnant who have a mental illness diagnosis, everything from mild depression to schizophrenia with active psychosis. I approached her because I heard her ask a smart question of another doctor about the effects of antipsychotic meds prenatally (the question went without a satisfying answer). For a psychiatrist, she seemed very conscientious and caring, and far more aware of the dangers of psych meds than most. She also seemed to understand that withdrawal needs to be gradual. This doctor said that she tries to maintain all of her pregnant patients off of meds, and that if she sees women prior to becoming pregnant she has them withdraw over 3 months. This sounds hideously short, but is longer than the 2 week line I have been fed personally by doctors, and have even heard presented at research talks as “gradual,” and she is also probably treating women who are antsy to start getting pregnant ASAP (I know that feeling well).

What was scary about the conversation though was that she said “The absolute hardest to treat are bipolar I women who want to breastfeed.” Continue Reading »

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. Continue Reading »

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.