You Mean I'm Not Lazy, Stupid or Crazy?!: The Classic Self-Help Book for Adults With Attention Deficit Disorder (50 page)

A Trial-and-Error Process

Many of the adults who come to us for coaching are dismayed to find that it takes time and patience
to find the right dose of the right medication. Nobody told them what to expect, and so they often feel that their doctor doesn’t know what he or she is doing when they encounter the “let’s try this” approach. Expect that it will take weeks, months or even as long as a year to get stabilized on a steady dose that works for you. We know it is hard for ADDers to wait, and we confess that we were
not exactly models of calm patience when we went through all those medication trials. At times it seemed as if they were trials of a different sort—trials and tribulations! You are still allowed to fuss and fume if that helps, but perhaps it will help to know something about the “whys” of this seemingly endless process.

Getting treatment for your ADD is not like going to the doctor for your flu
shot or an antibiotic. It is just not that straightforward. Your doctor can’t take blood levels to determine how much stimulant medicine you need, because blood levels don’t tell anything useful. There are no guidelines for what particular stimulant medicine will work for you as an individual. Dosage and the timing of the dose are also very individualized. What is known is that (1) stimulants are
the first-line (and generally most effective) treatment for ADD; (2) there is a generally accepted dosage range for stimulants (1 to 2 mg/kg for methylphenidate, 0.5 to 1 mg/kg for Focalin and ampheta-
mines, including Adderall); (3) it is standard to start with the lowest dose and gradually increase it.

Exceptions to the Rules

We stated that stimulants are the first-line treatment for ADD, but
there are always exceptions. Some people cannot tolerate stimulants for various reasons. For example, people with high blood pressure or heart conditions may need to avoid these medications. An increase in heart rate or blood pressure is a possible side effect. This is not a hard-and-fast rule either, as some people with these conditions can take stimulants along with their blood pressure or heart
medicine without ill effects. If you have either of these conditions, treatment would need to be closely monitored by your doctor, or doctors.

There are also exceptions to the dosage guidelines. Scientists and prescribing professionals are still trying to figure out the appropriate stimulant doses for adults with ADD. More research is needed, and physicians are understandably cautious about prescribing
controlled substances. However, in the current CHADD resource sheet for medication management, it is stated that underdosing stimulant medication in adults can lead to decreased effectiveness. Although we stated earlier that adults seemed to need less medication over time, it is also true that the commonly prescribed doses for adults are higher than they were when we first wrote this book.
By the time this revised edition is published and has been on the shelves for a couple of years, the guidelines for dosage range may have changed again. There are a number of physicians who treat adults successfully using higher doses than those recommended by CHADD. It seems that the jury is still out on the optimal dosage range for adults with ADD.

In addition, the weight guidelines for stimulant
dosage are being questioned. There is no scientific evidence that weight is useful in predicting the dosage needed for an individual. You will see weight-based guidelines in print in a number of places,
but they are the results of an educated guess about how to make dosing decisions. Stay tuned, as these guidelines are likely to change as more research is done.

More on Medication

How Do the Stimulant Medications Work?
They affect the neurotransmitters norepinephrine and dopamine. If you recall from the neurology lesson in an earlier chapter, the neurotransmitters are messengers for the brain’s postal system. No one knows yet
exactly how
the stimulants alter neurotransmitter functioning, we just know that they do.

Off Label:
Did you know that Adderall XR is currently the only one of the stimulants
that is FDA approved for treating adults with ADD? This is due to the long and arduous process of getting FDA approval. It doesn’t mean that other stimulants are not safe or effective for ADDults, just that research needed for approval is not complete. It is standard medical practice at this point to prescribe drugs
off label
for a variety of medical conditions. For example, aspirin is FDA approved
as a painkiller but has been used to prevent heart attacks for a number of years. With the exception of Adderall XR, the stimulants are approved only for treating children with ADD and adults with narcolepsy. This information is current as of August 2005, however. By the time you actually buy and read this book, the information may well have changed.

Medication and the Wake-Up Call:
For most
ADDults, the process of accepting that we have ADD and getting the right treatment seems to move at glacial speed. As hard as it is to wait, this state of affairs can actually be helpful. It gives us a chance to prepare ourselves for the life-altering experience of being awake for the first time in our lives.

The experience of having a good response to stimulant medication can be mind-blowing.
Before, perhaps you had an intellectual understanding of ADD and its impact on your life. Now it is
right in your face.
You can
feel
the difference. Many people have compared the experience of being on stimulant medication for the first time with being reborn. The world is sharper and clearer, and that mind chatter has faded or even gone away. You may feel relaxed in a way that you never have
before. Some people say they had their first good night’s sleep ever when they started taking stimulants. Others express that they feel truly alive and truly themselves for the first time in their lives.

This, of course, is heady stuff. Be prepared for a mixed bag of emotions. You may feel joyful, sad, angry and confused all at the same time. Joyful that you are having a wonderful experience,
sad and angry that you had to spend so many years in a dark, foggy place, and confused as you try to integrate a profound shift in your relationship to the world and yourself.

Do yourself a favor. Clear your planner of nonessentials for at least a week after you are scheduled for your first medication trial. If you can take a few days off, that would be optimal. This is not small potatoes—it
is a
Big Deal.
You will need time and space to process the changes you will be going through.

Of course, some of you will be disappointed, at least the first time around. As we said, it can take time to find the right medicine and dose. If the earth doesn’t move for you, so to speak, don’t despair. Keep trying, and you will eventually join the vast majority of ADD adults who find the right medicine
or combination for them as individuals.

Caution: Take That Lead Foot Off the Accelerator!
It would be ideal if we used the marvels of modern pharmacology to settle down, to clean up the messes in our lives and to get well enough organized. The reality for many of us is quite a bit different from the orderly plan we just proposed. This is how it goes …

Janet has just started Adderall and has
had a good response to the medicine. Yee hah! She gets excited about all the things she can now do that she was never able to do before. She starts out
with the greatest of intentions. On her “things I want to do” list are:

1. Get rid of piles and find an organizational system that works
   
2. Set up a daily routine with a reasonable bedtime
   
3. Get into an exercise routine
   
4. Balance my checkbook
   

Her list
then segues into somewhat more grandiose goals, like:

1. Write the great American novel [she has always avoided writing]
   
2. Remodel the entire house by myself
   
3. Learn Chinese
   
4. Master the violin
   

What actually happens is that Janet joins a writers group, signs up for the violin and Chinese lessons and then starts ripping up carpet and tearing down wallpaper. Pretty soon she is up to her ears in chaos, skimping on sleep and wondering why the medicine has stopped working. We know there is at least one other similar story in this book, but it bears repeating. You
know
that we ADDers never
get it right the first time around.

You have been duly warned. It is likely, however, that you will forget these words of wisdom when you are caught up in the excitement of having a more functional brain. This is where having a coach comes in handy to help keep you grounded. We are not saying that you can’t write the great American novel or master Chinese … only that you can’t do it all
today.
Take the steps to get your life in balance and you
will
be able to move forward toward your loftier goals.

Two Categories of Stimulants—Methylphenidate and Amphetamine

Methylphenidate (MPH) and amphetamine (AMP) are the two general types of stimulant medication. Both of them increase the levels of dopamine and norepinephrine in the gap between nerve cells. However, they achieve this goal through
slightly different processes, so the effect on individuals tends to vary. There are no guidelines as to which type of stimulant is best to try first. If you have a close blood relative who has had a good response to one or the other, you may want to mention this to your physician.

Methylphenidate

This is the generic name for Ritalin, the stimulant that has received the most coverage in the media.
Ritalin is not better or worse than any other stimulant, it just happens to be the one that was used most frequently for many years, and thus more people are familiar with it. Many physicians prefer it because they have more experience prescribing and monitoring the drug. There are two types of methylphenidate preparations: immediate release and extended release.

Immediate Release:
These are
the short-acting medications and this category includes Ritalin, Metadate, Methylin and generic methylphenidate. They are supposed to last for three or four hours, although many ADDults have found that they last only two or two and a half hours. Methylphenidate is a mixture of two mirror-image molecules (d and l isomers) in a one-to-one ratio. The d isomer (which is the active methylphenidate isomer)
has been isolated and manufactured as Focalin. The doses for this drug are half of the standard methylphenidate preparation, the result of taking out the inert molecule. The idea behind the development of Focalin is the hope that there will be fewer side effects.

Extended or Sustained Release:
The older-generation preparations of longer-acting MPH are disappointing. They contain a wax matrix,
which does not have an immediate-release portion. The release of the drug over time is also irregular. These medications include Ritalin SR, Metadate ER and Methylin ER.

Extended Release—the Next Generation:
The newer generation of extended-release MPH medications are generally more consistent in their effects over time. The delivery systems for releasing MPH during the course of a day are better
than the old wax matrix method. The medications in this category are Concerta, Metadate CD and Ritalin LA. There are the following differences between these drugs:

• The way the MPH is released and how it is used in the body
  
• The amount (or percentage) of stimulant that is released immediately and the amount (percent) that is in the extended release portion
  
• Whether the extended-release portion is released all at once or gradually (and continuously) over a period of time
  
• How long the drug lasts—the range is from five to twelve hours
  

What this means for you is that one extended-release medication can have a more gradual onset and last longer than others, while another may have a stronger effect at first but not last as long. Which one will work best for you is an individual matter. Again,
it is a matter of working with your doctor in a trial-and-error process.

Amphetamine

One difference between MPH and amphetamine is that the mirror-image d and 1 isomers are both active in amphetamines but have different effects. Dexedrine and Dextrostat are amphetamines that contain only the d isomer. Adderall (or mixed amphetamine salts) contains both the d and 1 isomers. Therefore, it is likely
that Adderall will have different effects than Dexedrine/Dextrostat.

Immediate Release:
In this category are Dexedrine, Dextrostat and Adderall.

Extended Release:
Dexedrine Spansules (dextroamphetamine sulfate sustained-release capsules) are the only older-generation sustained-release preparations. Adderall XR is in the second generation and thus has a more reliable delivery system.