Yesterday, given a back-channel tip, I steeled myself for the next anti-ADHD screed from the The New York Times, fully expecting yet another stigma-producing attack on the diagnosis itself and the medications so often successful in treating it. Yet, last night, when I read online the story by reporter Alan Schwarz (“Drowned in a Sea of Prescriptions”), my reaction was both grief and relief.
Grief that yet another person fell victim to a medication that, even though helpful for many people, can create severe reactions in many others. Relief that finally The New York Times got something right about ADHD, at least in tiny part: The manner in which medications for ADHD are prescribed in this country largely resembles a giant game of “Pin the Rx on the ADDer” or even worse — a “test the spaghetti” equivalent of throwing chemicals at someone’s brain and seeing what sticks. (Below, I offer an excerpt from my book‘s chapter on medication, written precisely to help people avoid such tragic and unnecessary outcomes; there is also a sidebar on the important distinctions between the two classes of stimulants: methylphenidate, or MPH, and amphetamine, or AMP).
Yes, I am angry, and I’ve been angry for a long time about the lack of clarity regarding the medication I’ve come to call “Madderall.” For 15 years, I’ve collected first-person stories about the potential dangers of Adderall, including the fallout from prescribing physicians who view it as the “go to” medication for people with ADHD without knowing to be watchful for its potential side effects. (In truth, the prescribing of any stimulant is typically done badly, with no attention paid to rebound or co-existing conditions. We can thank slipshod prescribing for much of the blowback against ADHD and the medications used to treat it.) If these physicians did as they should do and gathered reports from family or close friends as to how the medication seemed to be affecting the person, they might know about these side effects. But most don’t bother or even deem it important.
Yes, an important caveat must be emphasized: For some people, Adderall works well, with few side effects. Because Adderall so often can cause problems, however, I encourage people to take a conservative route: Consider it only after trying the methylphenidate class stimulants (Ritalin, Focalin, Concerta, Daytrana, etc.) and some newer delivery systems in the amphetamine class (such as Vyvanse). (Ideally, a trial should be given of both the amphetamine and methylphenidate classes, to see which works best.) Yet, so many physicians prefer starting new patients with Adderall, even though it is mostly an old and outdated option, given superior delivery systems available today that release the medication more evenly, creating less of a “rollercoaster” for neurotransmitters. Still, the ignorance around Adderall is only one piece in a very problematic and often tragic puzzle:
- Physicians who see ADHD as a “simple condition.” “You just throw a stimulant at it!,” one psychiatrist told me, explaining why he didn’t find ADHD treatment interesting and therefore not worthy his study. In fact, ADHD is a highly complex condition, especially when it is diagnosed later in life. A thorough history must be taken, including teasing out signs of the co-existing conditions suffered by an estimated 75 percent of late-diagnosis adults with ADHD. Medication must be started at a low dose (“There is no starting dose!” I’ve repeated for years, ad nauseum, yet still that seems the status quo.). Symptom targets must be identified and tracked. Yet what is the percentage of cases in which this kind of care is actually shown? From my long and close observation, it’s about ten percent. At best. Not a scientific opinion but one I stand by as reflecting at least a significant sub-section of the ADHD population.
- People with ADHD who are impatient for results and would rather “feel” the medication’s results than observe it objectively in their day-to-day function. If I had a dollar for each time I’ve admonished and tried to educate someone with ADHD (and their loved ones) about avoiding this dangerous trap. Often, they will listen to me only after the fact. After the typical crash that happens, for many people, about two months into Adderall usage. When they are completely depleted. When they are ready to realize that they can’t simply turn their brain and their life over to someone just because there is an MD after his or her name.
- Parents’ and loved ones’ denial systems about ADHD. Did the poor young man in the NYT story truly not have ADHD, as his parents claim? This was the weakest point of the story, I think; the reporter did not dig deeply enough, perhaps because he does not know that ADHD sometimes had a way of “sneaking up” on people later in life, when their innate intelligence and ability to get by in school without good study habits are no longer enough to let them keep up with their goals. I feel deeply for Richard Fee’s parents. It sounds like they tried. They really tried to warn the physicians of what was happening to their son, just as many partners of adults with ADHD try desperately to get through to the Adderall-prescribing physicians who are turning their partners into rage-aholics. But could it be the parents’ own denial systems about their son’s long-running problems augmented their son’s distress? At least these doctors believed him, he might have felt. Whether he had a co-existing condition such as bi-polar disorder that made him more likely to abuse or become addicted to Adderall, we’ll probably never know. Rest in peace, Richard.
I’ll share with you now the introduction to my book’s chapter on medication. Please share it with anyone who is thinking of seeking treatment for ADHD. I don’t want to scare people away from seeking the treatment that can vastly elevate their lives. But I do want to emphasize that we consumers must be educated, we must self-advocate. To lack vigilance is to risk a lot. Trust me on this. Please don’t let you or your loved one be another casualty. The method of identifying ADHD symptoms and medically addressing them is, for the most part, not rocket science. It’s not even brain science. It’s step-by-step logic and observation.
It took Alex two grueling years to convince his wife to seek an evaluation
and then treatment for her diagnosis of ADHD. “Now, who knows
how long it will take me to convince her to ditch this psychiatrist, who
refuses for no logical reason to prescribe stimulants, and find one who
actually understands ADHD,” he complains. “My wife is skeptical that I
or this support group could know something her psychiatrist doesn’t. But
trust me, it’s alarming how little this guy knows.” Looking back, Alex
wishes they’d been far more careful in selecting a physician.
In Jeanette’s case, the irony is that she never found her husband’s
ADHD a problem—until after he started medical treatment for it. “I used
to go to bed at night thinking I’m the luckiest wife in the world,” she
recalls. “Yes, Mike is lousy at paperwork and he doesn’t remember to take
out the garbage (or what day it’s collected!), but he is fun, very goodhearted,
and rarely gets angry, and loves being with me and the children.”
All that changed soon after Mike learned that he might have ADHD
and decided to do something about it. He had recognized in himself the
traits he didn’t like in his father, including poor follow-through on promises,
and wanted to do a better job with his own family. “His attitude was,
‘If treatment can help me to be a better person, why not?” Jeanette recalls.
Unfortunately, under the first physician’s care, Mike’s personality
changed completely after starting medication. “Medication seemed to be
a miracle worker at first, but then it ended up making him angry all the
time,” Jeanette explains. “I went from this perfect marriage to hating my
life and being ready to leave him. The worst part was that he didn’t realize
that things were getting worse, especially the anger, until we were in
major trouble. As far as he was concerned, his focus was better so that was
great. But in reality, his focus was unrelenting.”
Jeanette found the support-group’s feedback critical to realizing what
was happening. He was probably either on the wrong type of stimulant
medication or at too high a dosage. She also learned how to find a more
qualified physician and, more important, convince Frank that he was
turning into a father far worse than his own.
Stories like this are way too common for the support-group’s comfort.
As much as we might want to place our faith in our physician’s ability to
navigate the increasingly complex world of medicine for us, one troubling
fact remains: Many physicians, including psychiatrists, are poorly trained
to treat Adult ADHD. Some know that and respect their limitations, but
some don’t. As long as you understand this going in, and as long as you
take steps to be a smart healthcare consumer, the chances are good that
you will avoid common pitfalls and come out a success story.
“My message to those embarking on this journey,” Jeanette says, “is
don’t be afraid of medication; it can bring great changes. Just be aware.”
Indeed, lest you be scared off entirely from pursuing medication treatment,
know that, for many, it is a straightforward issue. In fact, ADHD
Partner Survey respondents report that when their partner started taking
medication, symptoms improved significantly within:
• Hours (15 percent)
• Days (39 percent)
• Weeks (19 percent)
As Jeanette learned, however, the initial “promise” of medications to
smooth out the ADHD roller coaster can soon peter out. Support-group
members have agonized over this phenomenon for years. Now, the medical
community seems to be catching on. “The diagnosis and medical
management of ADHD is only the beginning of a course of treatment that
should last a lifetime but rarely does,” declared psychiatrist William
Dodson in a 2006 article for Medscape.
This chapter will support you and your ADHD partner in creating your
own success story by helping you to:
• Avoid common pitfalls that lead to low treatment adherence.
• Understand that treatment education and goal setting form the
foundation of successful medication treatment.
• Know that each person has a unique biochemistry, which eliminates
the possibility of any single medication or standard dose being the
best choice for everyone.
• Recognize that it requires a careful, methodical process to find the
best fit in a medication regimen.
• Know that ADHD commonly coexists with other conditions, which
must be considered in any treatment plan.
The good news is that physicians are increasingly becoming more educated,
and these guidelines should help you shop for and recognize
competent care when you encounter it.
COPYRIGHT 1201 ALARM PRESS, 2008