Life as an Extreme Sport

Long-term Antipsychotics May Be a Medical Mistake

July 13, 2013 Kelly ...and everything else, Bioethics, Chronic Pain Bites

I’ve debated whether or not to post this since seeing Robert Whitaker’s lecture slides and heard about the results of his talk to NAMI from friends who were there, but ultimately decided that since this is an actual personal issue for many people, due to your own health or those of people you love, it’s worth making sure the information is available as far and wide as possible. Consent to medication needs to be informed, blah blah bioethics stuff.

Before the TLDR, the gist is this: evidence suggests that the best treatment for schizophrenia is not continual medication, and that

a significant percentage of those with schizophrenia who did not receive antipsychotics or took them for a very limited time had better long- term outcomes than those who took them on an ongoing basis.

And perhaps even more importantly, there’s significant evidence that the long-term use of antipsychotics creates a vulnerability to future psychotic episodes.

It’s important to note that Whitaker isn’t saying antipsychotics shouldn’t be taken, or aren’t needed by all people who are on them. But he’s gone over something like 60 years of data, a lot of which is from longitudinal studies spanning 20-30 years, and it looks like fully 50 – 75% of patients could make a complete functional recovery sans long-term antipsychotic use:

Medication compliant patients throughout 20 years: 17% had one period of recovery.

Those off antipsychotics by year two who then remained off throughout next 18 years: 87% had two or more sustained periods of recovery.

The data was so compelling by 1992 that Finland switched to a selective-use of antipsychotics that year… and now has the best long-term outcomes of anywhere in the world. Fully 79% of people – not just schizophrenics, but anyone who might be given a neuroleptic for psychiatric issues – are asymptomatic at five years, with 80% either in school or the workforce.

A lot of the issue appears to be what is known as “oppositional tolerance.” Anyone with chronic pain recognizes the concept if not the phrase: it’s what requires a gradual dose increase in medication to continually receive the same pain management. Essentially, the brain compensates for blocked dopamine or serotonin receptors in two ways. In the case of dopamine, postsynaptic neurons increase their receptors for dopamine as presynaptic neurons increase their firing rate. The opposite happens for serotonin: as the presynaptic neurons decrease their firing rate, the postsynaptic neurons decrease the density of receptors. In each case, the brain is trying to compensate for the effects of the drug being released into the system. Depending on the kind of drug being taken, we change the structure of the brain making it even more (or less) sensitive.

And, in fact, it’s the very recognition of concept that makes me wonder if Whitaker’s results can be extrapolated beyond neuroleptic use for management of mental health related illnesses and into chronic pain management; perhaps it’s better to treat acute instances of pain (“flares”) and then gradually decrease dosing until the patient is off medication than to continually dose the body with drugs “just in case.”Of course, I also have some admitted bias towards this idea, because it matches my experiences. We could easily call this revisionist history attempting to establish narrative control, too.

Anyhow, the very accessible and easy-to-read slides for Whitaker’s NAMI presentation can be found at this link, which includes detailed citations for those who’d like to read the journal literature. There’s also a good mother-of-patient perspective from Kathy Brandt at Mad In America. And if you really feel like having a sad today, you can read Carl Elliott’s comprehensive coverage of the death of Dan Markingson in the Seroquel studies, which should be required reading for anyone contemplating participation of themselves or a loved one in a drug study, or exposure to contemporary antipsychotics.

Shame, Stigma and Angelina Jolie’s Breasts

May 15, 2013 Kelly ...and everything else, Bioethics, Pop Culture

As reactions continue to race around the internet about Angelina Jolie’s double mastectomy and reconstructive surgery – the actual discussions, not the Monday-morning quarterbacking of her decision or the utterly vile “but what about her boobies” reaction from that particular subgroup of men who manage to amaze me by their continued ability to manage basic functions like breathing – I’ve been sent links. And more links. And then a few more. Most are relatively easy to dismiss because they’re quarterbacking a personal decision or they’re vile, but then you get the ones that tiptoe closer to decent – and they still have problems.

One that’s been flying around the internets today is the Maria Konnikova piece on Salon. I’m actually not terribly fond of this piece, or other pieces that hinge their complaint on the cost of testing and Jolie’s supposed privilege by virtue of her wealth. For one, let’s put the cost of testing squarely where it belongs: on the fact that Myriad owns the patent for the test (something that is being challenged in front of SCOTUS this June).

Secondly, almost no one remembers that the Affordable Care Act considers BRCA1 and BRCA2 tests to be part of preventive care, and that by January 2014, it must be covered for everyone, period. Yes, the pre-existing condition limitations and grandfathered insurance clause limitations means some women won’t have coverage for the test between now and January, but it’s not the doom and gloom exclusionary process that seemingly everyone wants to focus on when it comes to cost.

Finally, and most importantly, the notion of reducing stigma and shame by simply talking about these things – and in Jolie’s case, taking ownership of a body that has been extremely sexualized in media and popular culture – is incredibly important. In particular, even though we’ve moved society to a point where people talk about breasts and cancer together, it’s still in a “race for the cure” dialog, rather than in mastectomies and surgeries and things that shame. For example, within a day of Jolie going public about her mastectomies, Zoraida Sambolin (CNN) announced her own breast cancer and the mastectomies she’ll be having in June – and she credits Jolie for her decision to go public with her own health concerns.

This is dialog that’s important. It continues to de-stigmatize and remove shame from very basic aspects of women’s biology, and doing so is only a good thing: we need people to be able to talk openly and honestly about medical issues, illnesses, and diseases that affect women, not just men, and the sooner we can normalize aspects of the dialog that include frank discussions of biology and body parts in non-sexualized terms, the sooner we can embrace the idea that a woman – and her sexuality – is more than her breasts.

A Shift in Expectation of Self

April 6, 2013 Kelly ...and everything else

I really like this post on body policing, and in particular, how people seem to feel qualified to tell someone with a chronic illness that if they just did X – largely either adopt some quack routine or exercise – that all their problems would go away. In particular, I really liked this:

You’d never run a marathon with pneumonia, but a man with CFS needs to, because expending all that additional energy will make his problems go away?

You hear someone say that their life is awful. You hear them say that they’re in pain. You hear them talk about the medications, the doctor’s appointments, the flare-ups, the feeling of never being able to escape. You hear these things and you say “laziness”, but it never occurs to you that your own illnesses- a cold, the flu- make everyday tasks difficult- difficult enough that, quite often, you will complain about being sick and sometimes even skip out on obligations so you can rest up.

You hate being sick.

Admittedly, this was already on my mind, as this morning the fiancÃ©Oh yeah – hey, I got engaged! I guess that didn’t make it on to the blog, although it hit Twitter and I assume most of you read this from there. and I were talking about some general goals and ideas of accountability, and he asked me to talk a bit more about how exercise can be a challenge with my chronic pain.Sappiness alert! One of the many reasons I love him: he has taken the time to ask and learn about limitations and range and how life can be impacted by living with a chronic illness, and I’ve never once felt like this was anything other than an effort to get more knowledge so that he can do his best to support and encourage me. For the first time, I really had to think about the activity level that I held myself to as “the standard:” I was at one point doing yoga and pilates twice a week each; going to the gym three times a week; hiking and walking all over the University of Washington campus; and going dancing several times a week.

I’ve failed to meet anything even nearing that level of activity since I left Seattle, though, and it’s been discouraging for a number of reasons. Exercising hurts, aggravating my chronic pain. I know I need to do this, but I don’t like being in pain, so it’s a disincentive. The fiancÃ© listened to me complain a bit, and then asked a question that led to a lot of coins dropping all at once: he asked if, after a period of time, I’d “break through” and reach a point where exercising didn’t hurt, like most folks do when they’re just getting in to shape.

And I realized that I? Do not know. Today is really the first time I put together the other half of that equation: I was able to be that active while at UW because I was on a cocktail of medication that managed and controlled my pain. While dosing and makeup varied and was continually being adjusted, during most of this period of time, I was taking: 120mg XL morphine a day; 8-10 vicodin as needed for breakthrough pain; anti-nausea medication; two different anti-depressants to help boost the effectiveness of the painkillers; and a rotating schedule of sleeping pills. Not infrequently, this would all be topped off with an anti-anxiety medication (useful for tests and doctor appointments, which were almost always full of pain). So yes, no wonder it didn’t hurt to exercise – I had done a very good job at stripping away the pain.

It’s a bit weird and a bit of a relief to see that I’m actually not a failure or weak for not being able to live up to that standard of the past; I’ve managed to largely stop taking all medications for my pain (with exception of the occasional vicodin or high dose of Advil), but this also means I need to re-evaluate what I can and cannot do, and stop holding myself to a standard that I was only able to meet due to prescribed medications.

It is a strange shift in belief and concept of self, if nothing else.

Not a Privilege but a Right

January 2, 2013 Kelly ...and everything else, Duct Tape and Prayers, life and living

A version of this post should have been up before Christmas, but technology decided to take a holiday a bit before the rest of us.

…and then there was the time the WordPress wasn’t actually publishing posts, and things got behind, and then it all just seemed like such a big mountain to crawl out from under. Also known as “what I like to call the last two weeks.”

First and foremost – and with apologies, since I did really drop the ball on notifying people – I did receive word that my biopsy results were negative and I am, thankfully, cancer-free. My doctor was also able to rush the results, so I found out prior to the holidays, which was also a relief.

It was a very strange experience, though, in that it forced me, for a week, to once again contemplate mortality and the specific desires I have for life. Also, as a friend of mine noted, it was one of the instances where, all things wrong with the American health system that there are, the fact that I was being treated here and not in the Canadian health system was a blessing, because it was a fast process.

And actually, still is a fast process. There are obviously still “body is not functioning right” issues going on, and this afternoon will hopefully resolve a lot of that. So I’ve gone from concerned issue to ultrasound to biopsy to results to treatment inside a month – that’s a time frame that really is enviable…and it’s a time frame made possible by virtue of having startlingly good health insurance and living in a place where, while I do have to pay for that health insurance, one of the benefits is access.

That access is an important thing, because just a few years ago, I didn’t have that access. I didn’t have health insurance for a few years, and prior to those years, what I did had didn’t even cover a wellness health visit outside a very overcrowded campus health center that wasn’t equipped for anything but colds, flus, and sexually transmitted diseases. I shudder to think of the process then – deciding whether or not to seek out care, or if this is just a discomfort I could live with. What if the biopsy result had been positive? In my current position, it would have sucked, but I have family nearby and loved ones willing to come take care of me, and access to top-of-the-line hospitals and people who will make sure that I receive excellent care (or else).

A few years ago, none of that was necessarily the case – especially the access to care.

I am privileged. I didn’t have to live with the stress and concern and fear that happens when you get a bad test result back and fall into that wasteland of waiting. I knew that, should the result be a bad one, I would have excellent and aggressive health care waiting for me, and that I would ultimately be in charge of the decisions made, and that what happened to me wouldn’t be based on limited services or access or my ability to pay (or not). These are the sorts of privileges a lot of women don’t have – especially low income women living in states where legislature is actively working to shut down what is often the only existing source of women’s healthcare: Planned Parenthood.

I was able to usher in the start of the year with toasts of “fuck cancer” – and it is the memory of that relief and that privilege that, in part, continues to motivate my political activism, support of the Affordable Care Act, and donations to various women’s health and activism organizations, including Planned Parenthood.

Because no woman should have to wonder “cancer” without knowing that, if it is, there is easy access to care and support. “My body is broken and needs fixing” should not be a privilege but a right.

Found Those Million-odd Pieces

December 17, 2012 Kelly ...and everything else, Duct Tape and Prayers, life and living

Oh, I was doing so well until I wasn’t. But at least when I wasn’t, I was really committed to it.

I’m not sure what threw the anxiety into overdrive today, but by about 10am I was a quivering mess. And once again, it wasn’t so much the potential diagnosis as it was not knowing what was going to happen in the afternoon. I suppose my primitive brain assessed threats and figured that not knowing this afternoon was a more immediate concern than what may come from that test.

As for the biopsy itself – well, I had been tempted to live tweet it. Let’s all be grateful I didn’t, as I would have had to expose you to proof I’m a sailor’s daughter (I certainly swear like it), and then probably just would have slipped into somewhat mindless screaming. It seems that my cervix is as contrary as the rest of me, and a procedure that should have taken five minutes took closer to 25, and involved seeing stars at several points – and not the fun kind.

Never have I been so grateful for the deep breathing practices of my religion.

Of course, all this means is that the first step is done. The ob/gyn was honest: she’s not sure what’s going on, but the ultrasound images are concerning. The next step is the biopsy results, and from there we’ll figure out options. The results themselves won’t be in for a week, perhaps more at this time of year. I’ll call Thursday and she’ll either have the results or know when I should expect them.

Which yes, means that at minimum I have several more days of riding the roller coaster of anxiety, wondering if my bitchiness is the inherent or stress-induced variety, and trying not to overreact too much in the opposite “experience all the things” way.

Tag: health

Long-term Antipsychotics May Be a Medical Mistake

Shame, Stigma and Angelina Jolie’s Breasts

A Shift in Expectation of Self

Not a Privilege but a Right

Found Those Million-odd Pieces

Random Quote

Seek And Find. Maybe.

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