Med Alert

Here we go again. I guess I should ignore the regular hysterics that break out concerning ADD/ADHD medications.  but  stuff like this makes me think I think I should start stockpiling my medications, just in case.

Several drugs widely used to treat attention-deficit hyperactivity disorder should carry a prominent “black box” warning because of reports that they may have caused sudden deaths or serious complications, a federal expert advisory panel recommended yesterday.

The proposal to require a warning on medications such as Adderall and Ritalin took the Food and Drug Administration, pharmaceutical companies and advocates by surprise. The panel voted 8 to 7 to call for the labeling change after reviewing reports of several dozen patients who suffered cardiac arrest, toxic reactions or sudden death while using the medications.

It’s not that I want to downplay the reports about averse reactions in several dozen patients. I know about the 14 year old in Michigan who had a heart attack while on his skateboard. But dozens of cases is a small percentage of the millions who are taking these medications.  I can’t help wondering if there isn’t some degree of alarmism coming from people who are opposed to any medication used for psychiatric purposes. And some of what I’ve read in the articles about the recent FDA advisory board decision lead me to think that may be the case.

Of course, I’m biased because I’m among the people who have been helped immensely by ADD/ADHD medication, as one advisory board member noted.

“On the surface, it is hard to believe,” said Curt Furberg, professor of public health sciences at North Carolina’s Wake Forest University Medical School, who voted for the black-box warning. “What is also interesting is this condition is not really recognized in other countries — you wonder what we are treating. I am sure there are patients who need these drugs, but it is not 10 percent of all 10-year-old boys.”

No it’s not 10 percent of all 10-year-old boys, but if someone had diagnosed me at age 10 and given me a prescription it would have made a world of difference.

I’ll gladly concede that, but it’s the previous statement that raises my eyebrows: “…this condition is not really recognized in other countries.” Translation: “this is not a real disorder/syndrome/condition.” It kind of takes the wind out of acknowledging that there are patients who have benefited. Besides, maybe just imagined those benefits. After all, if ADD/ADHD is not “real” then it’s most likely a moral problem, so we’re probably just too lazy to just get over it.

And then there’s Dr. David Nissen, one of the advocates for “black labeling,” as quoted in the Washington Post.  

“I felt strongly we need to slow the growth of utilization,” Nissen said, adding that about 2.5 million children and 1.5 million adults are taking the drugs. “When you have that kind of exposure for drugs that are suspicious, that does create a major public health concern.”

And the in New York Times.

“I want to cause people’s hands to tremble a little bit before they write that prescription,” Dr. Nissen said

Actually, it’s Dr. Nissen’s statement that makes me tremble a bit, because it’s spoken like someone who doesn’t have ADD/ADHD and doesn’t know what it’s like. If that point of view prevails, I can guarantee that as a result more people will go without the help that they need. Either because doctors who might otherwise prescribe these medications will be more wary of doing so, or because the patients themselves will be made wary by such warnings.

As for “alternative treatments” I tried them when I was first diagnosed, because I was initially wary of stimulants (and that was before the recent FDA advisory). They didn’t work very well for me, if at all. I tried non-stimulant medications along with dietary changes and supplements, and I still struggled. It wasn’t until I got fired from yet another job that I had enough and asked my doc for the stimulant medication.

In my life prior to diagnosis and medication, things just got progressively difficult. I managed to get through elementary and high school due to my ability to compensate for my difficulty with focusing and attention. But each year I struggled a little more, and always to the constant refrain “If you’d just try harder … If you would only focus,” and it was never enough. In college, I hit the wall at the start of my sophomore year, and could only finish my undergrad degree by taking a partial load of classes. I managed to graduate in just over six years.

Then I graduated and went to work. Transitioning to college meant losing some of the things that helped me compensate. Transitioning from college to the workforce meant losing whatever else remained. Basically, on almost every job, I either got asked to leave, got fired outright, or managed to leave just ahead of being fired (often just barely). I tried just about everything. I made “to do” lists. I had more meetings with my various bosses about my tasks, etc. I got organizers and made valiant attempts at using them. It always ended the same way; with me making an exit one way or another.

That pattern didn’t change, nor did my ability to change it, until about four years ago when I got a diagnosis and the right medication. Since then, I’ve had and left a few more jobs. The difference was that I left on my own terms, not because I got fired, or was trying to escape being fired. In fact, post-diagnosis/medication I got the best performance reviews I’ve ever had, and even occasional praise for my work. That never happened before.

And it wasn’t just the medication. I also worked with a coach on strategies to help me manage better and to work around what remained of my symptoms (because ADD/ADHD never really leaves so much as it abates with the right treatment). But the medication made it possible for me to focus in a way that I couldn’t before, and thus I could use various tools and coping strategies more effectively as a result. Once the fog was lifted even a little, I could see what I needed to do and I had enough focus to do it.

There’s some argument to be made that people with ADD/ADHD are not “disordered” so much as we just have the misfortune of living is a culture that doesn’t value, and even discourages, the traits that make up ADD/ADHD. Thom Hartman does a pretty good job of describing it with his “hunters vs. farmers” theory, particularly in his “Damaged Hunters” essay.

When people grow up being punished for being the way they are, they become damaged. They think of themselves as misfits and incompetents. They lose their own personal power, become shaken and fearful, and develop a variety of compensating behaviors—many of which are less than useful.

What you—the parent, teacher, counselor, or physician—what you tell the ADD child about himself can have a decisive effect. Children respond very differently to being told “This is how you work” instead of “You just don’t work right.”

… Every type of culture puts enormous amounts of effort into educating and inculcating cultural values into their citizens. That’s how it becomes a culture.

…And so we train our young. We reinforce and strengthen in them those behaviors, assumptions, and beliefs that we find useful as a society, and we discourage or crush in them those that are not useful or even counterproductive to the orderly flow of our culture and its work.

Hartman goes on to suggest that mediation may not be the right way to help children with ADD/ADHD (and probably adults as well), and seems to be saying that what’s needed is a cultural change in how those children/adults and their unique “gifts” related to ADD/ADHD are valued. So, he believes ADD/ADHD is real in some sense, but prescribes different treatment. It sounds good, and it’s an ego boost to anyone with ADD/ADHD (“I’m not the one who doesn’t get it!  They just don’t get me!). But that social change is going to be a long time coming, if at all. In the meantime, some of us have to find a way of coping in a culture where our “gifts” are mostly seen and treated as flaws and liabilities, and without having too bumpy a ride along the way.

So, as I’ve said before, they can take my meds when they pry them from my cold and dead hands if it means returning to some semblance of my previous life. To be honest, the thought of going back to the way things were and the way I used to function scares me. There’s no way it wouldn’t be a huge loss, a huge step back. I’d rather just give up, scale back, take odd jobs or just not bother trying to do anything at all, rather than go back to pushing that rock up that hill. It always rolls back down again anyway.

While it doesn’t look like anyone will be confiscating ADD/ADHD medications any time soon, they may become a bit more difficult to get; maybe a lot more difficult for some people. That may cut down on over-prescription of stimulants to some degree, but it’s inevitable that some people will be sentenced to struggling through ADD/ADHD without adequate treatment, or without any at all.

And if you ask me, that probably the intent, at least to some degree, and it’s coming from people who don’t believe that ADD/ADHD is real and that it has real consequences for people when it goes untreated. My story isn’t one of the most extreme examples of going untreated. For others, the consequences include violence, jail or prison, and even early death. For some people, that makes sense: bad endings result from moral failings, not psychological or mental difficulties. People just need to “try harder” and “focus more,” even it recommendations like this ultimately make it more of struggle for some people to do just that.

Not me. Having experienced “better living through chemistry” — and a level of success that seemed out of my reach prior to it — I’m dead set against going back and doing it the hard way; or the harder way. It’s not that I doubt the value of struggle. I’m sure some people benefit from it. It’s just that I think it’s way over-prescribed.

About Terrance

Black. Gay. Father. Buddhist. Vegetarian. Liberal.
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6 Responses to Med Alert

  1. Anne says:

    The problem isn’t that a lot of people object to drug therapy for psychiatric problems.  The problem is that few or no drugs are run through clinical trials on <i>children</i> before they’re prescribed for them.  

    Children are more than just short adults, they are <i>different</i> in physical and psychological ways. You can’t just cut an adult’s dosage in half and prescribe it to a child with the same degree of safety. (Okay, it <i>could</i> be safe, but they’re essentially "field-testing" the drugs instead of running controlled clinical trials.)

    Drugs given to infants are even more dangerous and less-tested. Few parents will sign up an infant for an "experimental" drug for a less-than fatal condition, so testing antibiotics or vaccines is nearly impossible.

    Having experienced "better living through chemistry" myself, I’m a fan of it.  Absolutely.  But I’m an adult.

    I’m <i>not</i>, by and large, a fan of drugging children for being children.  Not all of the kids being prescribed have any real need of these drugs, sometimes it’s used because over-worked teachers and over-tired parents just don’t have the energy to deal with a high-energy child. Not that I don’t sympathize with the urge….)  

    Some of these kids have emotional, psychological, or social needs that aren’t being met.  Some of them are over-stimulated by their environments. Some of them just aren’t being challenged <i>enough</i> by their environments.  But, in this society of using mass-production methods in every aspect of our lives, they’re being drugged into conformity. 

    It’s my personal opinion that when it comes to kids, drugs should be a <i>last</i> resort, not a first one.

  2. Terrance says:

    Well, maybe it’s just me, but I still regret that I wasn’t diagnosed or treated as a child and that no one was even capable of figuring out what was going on. It would have saved me a lot of trouble, and I’d probably have gotten a lot further in my education and career. Getting it at 30-something is better than never, but there’s a lot of lost time just spent wandering around in a fog and falling on my face at regular intervals.) I just think that a certain percentage of kids, like I was, are probably going to end up like me — not getting the help that they need, having a much harder time than necessary, and getting help late if they get it at all.

    (I should probably add that I have ADD (without the “H”, inattentive type), so I was not a disruptive kid who was more likely to get attention that would yield diagnosis/treatment, but rather the kind who just failed quietly and without anyone much noticing.)

  3. Nio says:

    I wasn’t diagnosed with ADD until I was 30 or so. However, after watching my younger brother throughout his life, and his diagnosis, I knew I was and ADDer.  Others in my extended family also have ADD, and dyslexia, but because of insurance company resistance, I couldn’t get the diagnosis. 

    Since then, I’ve tried the cocktail of drugs: Adderal, Ritalin, Statera, and a few others and combinations of others. ALl of them made me feel like crap. The Statera eliminated my persynality and all that was left was a blank affect, the Adderal gave me heart palpatations, and the Ritalin (which I take PRN now) makes me irritatble, moody, anxious, and phsyically ill if I take more than four in one week (and I have the lowest dose available. Most times I cut the pill in half).  It takes weeks for the Ritalin to completely leave my body once I stop taking it due to the semester ending.

    I wouldn’t take any of the drugs if the educational system wasn’t set up the way it is.  I am a slow learner, bad in a crisis, can’t multitask (although all the other things fit) and this makes my ADD a limitation, not an assest.  Often times I am punished by professors because I don’t move as quickly as the other students and tutors are out of my price range–especially if they *know* how to teach someone with ADD and dyslexia–leaving me behind in school work, always.

    Had I been diagnosed when I was a kid, I would’ve had the same success as my brother who got all the help he needed in primary, secondary, and college. Instead, my edcuation has been  a constant struggle to 1. get those in educational power to acknowledge my disablilities and to 2. work within them, not against them. If the system was set up in a way that acknowledges different types of learning, encourages different types of teaching, I think there would be a lot less people (kids and adults) taking potentially poisonious drugs.

    I know I wouldn’t take them if I graduation wasn’t my goal.

  4. Mari says:

    It’s not just ADHD medications.

    Years ago, I suffered from horrible menstrual cramps and related conditions, to the point where I usually ended up having to miss two or three days of work per month. Major problem.  I tried multiple medications, therapies, hot baths, exercises, and so on. I also tried the pill, which gave me morning sickness.  Nothing helped — until I went on Norplant.

    Eureka.

    Norplant quite literally saved me.  I was on it for ten happy years, and I’m very pleased to report that being on Norplant for that long has meant that now, the menstrual problems have subsided almost completely (I get PMS from time to time, but nothing like the previous situation).  Mind you, I was completely celibate when I went on it.

    Norplant has since been pulled from the U.S. market because two – two — women experienced severe side effects. I’m not trying to understate their problems, but hundreds of thousands of women were helped.

    I see this in my current job all the time: medications that do help the vast majority of users pulled from the market because a small percentage have had side effects. I don’t have a solution, but it irritates me, greatly.

  5. Terrance says:

    Interesting. I had one weird side effect with Straterra. The only side effect I have with Concerta is a slight decrease in appetite. I admire you for opting to struggle in order to change the system. I can totally understand the frustration.

    But I think the kind of changes in education and in society at large that would help people with ADD, or at least make life somewhat more bearable for people with ADD, is going to be a long time in coming. And I’m not talking years. I’m talking decades. That’s because we’re still in a place where lots of people don’t even believe it exists, something hinted at by one of the doctors quoted in the article. It’s of particular concern because the people who don’t "believe" in ADD/ADHD are the same people advocating to make medicines more difficult to get, if not taking they away entirely.

    That’s going to put people like me — and kids like I was — between a rock and a hard place. After going through most of my life untreated, I can honestly say that the day I can no longer get my meds is the day I simply retire from life, do as little as possible, and just watch it all pass by. I know what that prior struggle was like. I know how pointless and unresolvable it was. I’d rather go nowhere than go back to it. I just won’t.

    Sometimes I think people who don’t have ADD just don’t get it. I’ve written before about how it sometimes seems like most people are speaking an entirely different language than I am. I need to spend some time talking to people who do get it. Fortunately, this week I’m going to an first-time meet-up for Adults with ADD/ADHD in the Metro-DC area. If nothing else, it’ll be nice to commiserate.

  6. Anne says:

    Well, maybe it’s just me, but I still regret that I wasn’t diagnosed or treated as a child and that no one was even capable of figuring out what was going on. 

    I didn’t say (or mean to imply), Terrance, that no child actually needed chemical intervention. I said I fear that the trend has become toward prescribing a pill first, rather than last.

    As someone who has personally experienced better living through chemistry, I’m a big believer in it. I just don’t think every rambunctious child needs to be drugged.

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