Saturday, August 13, 2011

Q: How to Deal with "Meds Roulette"?

A few years ago, I participated in an Ask the Expert Chat on "ADHD and Relationships", sponsored by the National Resource Center on ADHD. In this free forum, the public is invited to ask questions of a top ADHD expert in a live online chat. This text-based Q&A is later stored in the CHADD Ask the Expert archive (you can view the topics at that link but access is limited to CHADD members). Among CHADD membership's many benefits, I consider this one of the best!

Question from Nina:  How do you deal with a significant other who just got diagnosed with Adult AD/HD and is trying out new medications with all different types of side effects?

Hi Nina,


Okay, so you’re at the stage that we sometimes call “Meds Roulette.” By the time some adults with ADHD are diagnosed, there can be intense pressure to "get better FAST."  Unfortunately, tweaking medications is not a fast process. So, it's important that you both show some patience and use a thoughtful approach. Most of all, it's important that both of you be educated.
 
We are extremely lucky to have many medication options today. Just a few years ago, choices were few and side effects much more problematic. Today’s wide range of options increases the odds that each person can find one that works with their unique biochemistry. We hope that some day, genetic research will help indicate which medication will be most effective for an individual. But we’re not there yet. In the meantime, that means lots of trial and error.

That said, a careful prescribing physician and a pro-active patient can take steps to avoid/minimize potential side effects or cut them short when they do occur. Noting side effects can be an important part of the process; side effects can provide clues as to the underlying neurophysiology and the next direction to consider. Unfortunately, many physicians aren’t so careful in their monitoring or don’t know how to read such clues.
 
The fact is, 75 percent of late-diagnosis adults have a co-existing condition, such as depression or anxiety. A stimulant alone can intensify the depression or anxiety in some people, who might need an antidepressant or anti-anxiety medication in addition to a stimulant. There are many possible concerns and options.

Overall, though, the problems I hear most often involve physicians following no logical plan or method. Instead, they use a more haphazard “pin the meds on the ADHD” approach. For example, some prescribe a medication at too high a dosage, when they should be “starting low and titrating slow.” (This means beginning with a low dosage and increasing it by small increments over time, noticing the effect at each stage.) A most regrettable result is the person deciding that "the cure is worse than the disease" and gives up. That’s a sad waste of opportunity.

Dr. Margaret Weiss is a top ADHD researcher and clinician. She was kind enough to share with me,  so I could share with my book’s readers, the recommended protocol for achieving optimal results with ADHD medication treatment. I am hoping that readers will share it with their doctors, so we can all work together to raise treatment standards.
 
Based on the best experts' advice, I also recommend that the partners of adults with ADHD get involved with the process, taking a team approach, unless it is clear that your ADHD partner can handle it well on his or her own. Throughout treatment, the physician should be asking for your feedback. This is recommended for several reasons:
  • Some ADHD adults don’t always notice the changes (positive or negative) or remember to share the details with the physician.
  • Some might half-hear or half-forget instructions from the physician. (It’s amazing to me how many ADHD-treating physicians, knowing ADHD challenges, don’t write down instructions for their patients.)
  • Some might not notice that the physician is not acting in a methodical or thoughtful manner.
Some people bristle at the idea of a "team approach" when pursuing ADHD treatment. They might say, "My partner is an adult; why should I be involved?" I wrote about the reasons for it in this post, Partners in Life, Partners in ADHD Treatment.

Of course medication is only part of the physical treatment process.  It’s also important to pay attention to diet, sleep, food sensitivities, and exercise.  No medication can offset poor health and lifestyle habits.

When the medication is right, however, it can make life so much easier for everyone. I’m constantly astounded by the positive reports from the adults in our Silicon Valley Adult ADHD discussion group  and the online “partners of adult with ADHD” group as well. It’s an awe-inspiring transformation to witness.  So, if you want best results from medication, know that it takes an educated, pro-active approach!  Here are more resources to help you do just that:
  • Adult ADHD Treatment guidelines from the National Resource Center on ADHD
  • A video interview with me, Gina Pera, on "the side effects of poor medical treatment for Adult ADHD"
  • An overview of ADHD medications, including dosage availability and common side effects, presented by ADHD specialist Ted Mandelkorn, M.D.
  • ADHD Practice Guidelines, including rating scales (recommended for gauging medication efficacy) and medication guidelines, compiled by Dr. Margaret Weiss and colleagues at the Canadian ADHD Resource Alliance (CADDRA)
We welcome your comments and advice on finding effective medical treatment for Adult ADHD!

24 comments:

  1. This is a great post Gina.

    I just wanted to post to affirm the need to have patience and not force a fast solution. I started the search for the perfect medication(s) 2.5 years ago and it took until...I think about 6 months ago before we really found the winning combo for me. I knew it might take "a while" but I had no idea it could take that long. Not that everyone will need that long to figure it out...but for me, that's how long it took.

    Part of the reason it took so long though, was the fact that my prescriber (who I actually generally really like) gave me several starter rounds at the beginning there that were just too much for me to handle. I had to go through a few rounds of dosages that were just too high for me, and all the side-effects that entailed. Through this process, my prescriber and I learned together to indeed, start low and go slow.

    Even now, I don't feel like it's "perfect" every day, since I'm female and I am pretty sure my hormones screw with my meds for about 8 days out of every month, but overall, I feel good now, I like the meds I'm taking, they make my life better and it was worth the 2 year journey.

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  2. My husband just started treatment for his adhd six weeks ago. He is on the Daytrana patch. He started with 10 mg for the first 4 weeks and is now trying 15 mg this month. How will he and I know when he has found just the right dosage?

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  3. Thanks, Katy, as always, for sharing your experience.

    Maralu, the simple answer is that you won't know when you and your husband have found the right dosage if you and your doctor are just "winging it." What has been the process? Did you start out targeting trouble areas, so you have something to measure by? That is the first step.

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  4. Ah, meds roulette.

    I'd also like to say to "Nina", who asked the original question, that your support is very important at this time. Meds roulette is a pretty difficult thing for the person going through it. Whenever I've gone through it (and I'm going through it right now) it's helped me immensely to know that my partner is behind me, encouraging me to find the best solution for me, and not pressuring me to just take anything that might "fix" me.

    Educate yourself about the meds your partner is taking and what the potential side effects might be. It really helps to know what you can expect, both in terms of negative side effects, and in terms of how the med is "supposed to" work. Also, partners need to take care of themselves at a time like this, and call on friends or other family members for support. Meds roulette isn't easy for anyone involved.

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  5. I read somewhere (maybe here?) that women who aren't diagnosed in grammar school, will often not get diagnosed until a major life/hormone shift like starting college, becoming a newlywed, or after just having had a baby.

    Having ADHD myself, I didn't really catalog where that information came from so I am paraphrasing, but I remember having an aha! moment when I read it. I was diagnosed in grammar school, but I've been able to go on and off meds through my life. In retrospect as I hit each of those stages is when I had to go back on medication to function.

    The thing I have found surprising is how, for example, a medicine that worked for me all through high school, no longer works for me. It seems I go through medicine roulette every time I re-enter the pharmaceutical part of my therapy.

    It's not that I like it, but I've made peace with the process. The problem I have is beginning medication roulette with my son. I appreciate this post so much, I like my doctor, but I do feel there is a lack of monitoring and noting of side effects for my son. It feels like a lot of our advice for him is "wait it out, the side effects will subside." As his mother I see turmoil that I don't know how to articulate well, but I think could be better managed. I will take your book in to our next appointment, he's a good doctor and likes that I'm proactive.

    Probably. :)

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  6. Alissa Rae -- good for you. No matter how nice our doctors are. No matter how much we like them. No one is going to be as invested in our (or our children's or partner's) lives as WE are. :-)

    I think it helps to know that there is no one "right" medication or dosage. The process is much more art than science. So, maybe that helps us to be less intimidated by the process.

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  7. Hi Addy,

    You are so right! When a member of the "partner's of" group complains of their partner's lack of progress with medication treatment, I ask, "What is he/she taking?" If they don't know, I tell them they need to learn about it. To help their partner track, if necessary.

    Some therapists and physicians do not help matters, by not eliciting a partner's feedback. They are belaboring under some misapprehension that ADHD (or its medications) never is accompanied by low insight (lack of self-awareness) and applying some hidebound Freudian view of the "controlling spouse."

    That might be something to watch for in some cases. But it still makes sense that both partners are educated on the treated process and helped in developing a cooperative, collaborative approach.

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  8. typo...I meant "treatment process." (Wish Blogger allowed edits!)

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  9. My significant other refuses to take medication for ADHD because he doesn't like how it feels. To his credit, he has done exceptionally well in managing his condition but lately it has come at a great cost to me. We are now in a long distance relationship pursuing our graduate degrees and the new environment is putting heavy strain on us. He wants a break because he cannot see living with anyone or having distractions while working on his degree. (I will be done in a year and we had planned for me to move with him, this is not our first long distance trial). Do you have advice for those coping with high functioning people with ADHD that have trouble focusing when others are around? We have long acknowledged his ADHD but are now really trying to research options where we can both compromise. This could make or break our future together and I am not sure how much to take as "Well, he is trying but I just have to live with the fact that he doesn't want me in the house to function" or basically I don't know my alternatives. I'm searching without a real direction. I want to compromise but how much is too much?

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  10. Hi Anonymous,

    One thing I've learned after several decades on earth is this: There are no relationship "rules," and anyone who tells you otherwise just might be pulling a power trip or trying to sell you something. :-)

    What works for one couple can drive asunder another couple. The individuals who comprise a couple are, well, individuals.

    That said, I'm focusing right now on your first two sentences:

    "My significant other refuses to take medication for ADHD because he doesn't like how it feels. To his credit, he has done exceptionally well in managing his condition but lately it has come at a great cost to me."

    1. What does that mean, he doesn't like how it feels?

    2. What was his treatment process? Did he try several medications? Did he understand beforehand how the medications work in general and how they might specifically help him?

    3. Did he address other health habits that might interfere with medication efficacy, such as cigarette smoking, marijuana usage, or caffeine consumption?

    4. Why is it "to his credit" if his doing exceptionally well has come at great cost to you? I'm not seeing anything creditworthy in that. :-)

    5. My observation is that wanting a break while working on a degree can easily morph into wanting a break while looking for a job, working at a job, and on and on.

    6. You call him "high-functioning," and maybe that's true, compared to some people with ADHD who don't do well in school. But many people with ADHD do well in school because they become tunnel-visioned, focusing just on school and nothing else. What keeps them going is the structure and the "reward" (perceived or actual) they will receive at graduation.

    Personally, I don't consider someone "high-functioning" (ADHD or otherwise) if they can't walk and chew gum -- that is study at school and have a relationship.

    My question to you would be, if you're happy continuing in this relationship getting just what you're getting, great. If you're wanting something more, maybe you should focus on what he has said and taking him at his word.

    So, maybe your "alternative" is someone else who is willing to be a full-spectrum person who can work or go to school and have a relationship.

    Good luck sorting it out!
    g

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  11. Hi, I like the title Meds-Roulette. I cannot understand why there is not a blood test to check the chemical levels before going on a medication to increase or decrease certain chemicals in the brain. I have asked several doctors why there isn't a blood test, since we test chemical levels in other areas of the body
    and the ones I have asked told me there probably could be and they do not know why there isn't a test. Could it be that the pharmaceutical industry is making so much money selling to everyone because there is not a test?
    These are powerful meds and to play guessing games for weeks, months or years cannot be good for a person's body or mind or emotions...especially children who are developing in these areas. ADHD seems to be like a fever (which can be caused by the body fighting an infection) and we should determine the cause of the fever before prescribing meds.
    The same for ADHD, which is more like a syndrome
    that can be caused by many different things...only one of which is a chemical imbalance needing meds. The issues of attention disorders can be caused from lack of enough glucose to the brain, gluten intolerances or allergies, hypoglycemia, weak short term memory (like a computer going off before the information is stored in the hard drive - the brain), food coloring and preservatives, sleep disorders etc. A neurologist shared with a group of us in a CHADD meeting that sunlight and exercise will increase the Dopamine in the brain. I am not saying the drugs are not important for some people, but since they don't work for many and there are so many side effects, shouldn't we make sure we have eliminated many of the other reasons before looking to such powerful medications with so many side effects? When we treat ADHD as an illness that a drug can fix rather than a symptom of something that we need to investigate the cause, I believe we not only delay the benefit someone with ADHD can experience if the cause of their ADHD is not a chemical imbalance but some other issue...not to mention all of the powerful meds put into their bodies and side effects they endure. In our Chattanooga LeanringRx center, we have noticed that almost always students we have tested with attention disorders have a weak short term memory and when that cognitive skill is strengthened, they can focus better and maintain their attention easier...because "the
    ram part of their brain" is not forgetting (like a computer losing electricity before saving information to the hard drive)before they
    can get the information into the brain. On some occasions the auditory processing part of the brain is weak so they have difficulty processing "correctly" what they hear making it seem like they are not paying attention. If weak cognitive skills are causing the attention problems and there are no chemical imbalances, we have seen that medication can slow their mental processes making it more difficult to pay attention or learn.
    Thanks again for the article on "Meds-Roulette"

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  12. I am not a clinician OR researcher but I'm willing to speculate that part of the problem is that while researchers kind of have an idea what chemicals may be in or out of balance in the brains of many people with ADHD, they don't really know what "levels" might indicate a problem in individual people. Using myself as an example, I am extremely medication sensitive...I take dosages of medication that my prescriber would ordinarily probably prescribe to a 6-year old child, but I'm a 35 year old woman (granted, I only weigh 110 lbs...but I'm a lot bigger than the average 6-yr old). Other people my size can take normal adult dosages of things and be fine...others need more...depends on the person. Of course, as I said, I'm not an "expert"...but that's a guess...

    I absolutely agree that it's good to eliminate other possibilities. I am also hypoglycemic and have addressed that issue...but still have ADHD symptoms. I know for a fact that I can't handle caffeine so I have cut it out of my diet (aside from a very occasional decaf coffee or tea...it's a rare event is all I'm sayin'). I'm a basically healthy person who rides their bike or walks to work. I do not have a gluten intolerance...two of my family members do so I'm very familiar with the symptoms, though I have cut out milk and some other dairy products that I do have issues with. I have eliminated soy from my diet because my body doesn't digest it well...and I don't eat a great deal of things with weird dyes and stuff in them.

    And yet...I still have symptoms of what we call ADHD. My long-winded point (sorry, I do have ADHD after all) is this: the "but there's no test" argument is soooooo easy for people to fall back on. I'm living proof that sometimes riding the meds-roulette wheel can significantly improve people's lives (just as eliminating other possibilities can improve people's lives). The fact that research on ADHD is still in-progress should not negate its existence.

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  13. Well said, Katy!

    A few points.

    1. "I take dosages of medication that my prescriber would ordinarily probably prescribe to a 6-year old child, but I'm a 35 year old woman (granted, I only weigh 110 lbs...but I'm a lot bigger than the average 6-yr old)"

    Actually, children are typically faster metabolizers than adults (has to do with kidney development or somesuch). So small children might actually require larger dosages than their adult counterparts.

    2. "Other people my size can take normal adult dosages of things and be fine."

    Indeed, this is why there are no "normal" dosages, and why I am always harping about "start low, titrate slow." Because there is no "average" -- only individuals.

    3. "The fact that research on ADHD is still in-progress should not negate its existence."

    Absolutely!

    It is very easy to opine from the sidelines instead of from the lab. Anyone who has the tiniest clue of neurophysiology knows that it's beyond the grasp of most mere mortals, especially if those mortals have not studied hard its intricacies for many MANY years.

    The brain is incredibly complex. Most of us cannot even begin to comprehend its complexity.

    Instead of criticizing scientists for not understanding more, we should have a little more appreciation for their hard work and single-minded dedication that has gotten us this far.

    Science is often a lonely business, and it's often NOT lucrative. Obtaining a PhD in molecular biology, for example, is not for the faint of heart, and the risks are so great -- that one's dissertation advisor will be helpful, that the chosen hypothesis will be a good one, that the money will hold out, that the student loans can be paid off, that some day they will be able to focus more on relationships and family, etc.

    In other words, hats off to scientists! Thanks for their hard work on our behalf! :-)

    g

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  14. Gina, you know, I mostly consider myself a nice little momma that likes to sing and sew, but with three of four members of my house in the midst of this "medication roulette," I often feel like I am supposed to be a scientist. You stole my breath a little with your reply to my comment when you said "the process is more art than science."

    I love art! :)

    I think the mess me we make living life is art, I think the way my brain works is a
    kind of crazy art, but I never thought of this medicine part in that kind of forgiving way.

    I am totally going to sew that.

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  15. Hey, sewing-and-singing-momma. If you sew it, please share a photo! :-)

    I know what you mean about feeling the need to be a scientist. For my own husband, it was doubly confusing when I felt the need to be a scientist when he began treatment -- because he IS a scientist. And he was working with an MD. Geez, wasn't that enough?

    Later, I came to call the episodes of my husband the doctor working alone on his treatment "Dumb and Dumber."

    Not because they literally were dumb, but because my husband didn't know what to tell the doc, didn't know what to expect (what IS optimal treatment, anyway?), held little optimism that medication would really make a difference, etc.

    And the doc, well, he was just stuck in some rigid paradigm. Perhaps trained only by a pharma rep. And this was at a well-known clinic!

    The doc had no idea that Adderall can make many people with ADHD extremely irritable and aggressive. He said that the Adderall had "unmasked" bi-polar and wanted to prescribe another Rx for that. This made no sense to me; the Adderall had definitely changed my husband's personality. For the worse.

    At that point, I decided that someone with common sense and good observational skills (me) had a role in the process. I was no longer intimidated!

    That's when I started an online group for partners of adults with ADHD, because I wanted to gather some of my own data by comparing notes with other people. Since most docs then were not asking for third-party feedback (as they should), I figured there were many people like me, observing certain phenomenon in our loved ones that was totally unknown to the docs. I was right.

    And from that, came a book. As well as the stories of thousands of people assuring me that there is no "one way" about anything for people with ADHD. Whether it's medication or anything else. There is only educated guesses, trial and error (but with the trial done carefully and methodically, of course), and an open mind.

    So, artistry and logic. :-)

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  16. "So small children might actually require larger dosages than their adult counterparts." Fascinating! So perhaps I should have had my drinking heyday in elementary school? (Kidding...only kidding...)

    Also fascinating to me in this arena: Genetic factors. I have two parents who also have "intense" reactions to meds/chemicals. Once, they tested my mother to see how long it took her to metabolize alcohol...it took her something like 2.5 days to process an amount that would take an "average" person one day, which may explain why even though she had no alcohol within 24 hours of a major surgery she actually died on the table and had to be medically revived. My father is an even more extreme example...like me, he is very sensitive to caffeine and other medications have caused him odd reactions...and of course I myself seem to simply be "sensitive" and don't require much medication for effectiveness...I feel like family history may be helpful to consider when prescribing meds and I wonder how many prescribers even think about this...though perhaps my family is more unusual than I think, lol, and it's not such a big deal?

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  17. Hi Katy -- oh yes, genetic factors are paramount. Trouble is, we have no way of predicting these on the front end.

    That's true except for one: an enzyme called Cytochrome P450, which savvy docs will sometimes will have a client tested for if medication is metabolized far too rapidly (I first learned of this about 10 years ago and haven't revisited, so I *think* it's too-rapid but maybe it could be too-slow).

    Here's a list of the drug interactions with Cytochrome P450: http://medicine.iupui.edu/clinpharm/ddis/ClinicalTable.aspx

    Scientists are now hard at work teasing out these pharmacogenetic factors.

    But thank you for noting this important factor -- and the reason I am always harping on START LOW!!! Because some people are super-sensitive, and they might lose hope that a medication might work for them.

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  18. I am ADHD TEEN. Speaking out on ADHD Read my Blog.
    www.AdhdFromATeensPointOfView.blogspot.com
    follow the twitter page @ItsOkHavingADHD
    thanks guys

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  19. My marriage is in serious jeopardy, after 16 years. I am 38 and have just been kinda diagnosed with ADD/ADHD and am seeking a more experienced doc for a better diagnoses. I have always thought I had this issue. My wife however has always made it seem that this was just my way of getting the blame off of me. So to not ruffle anymore feathers I would never push the point. Well now she has asked me to leave the home. She is tired of feeling like number 2 or 3 or 4 and me telling her I will try to do better or I will do better and failing. She is so done, when I asked her to come with me for the second appointment she hesitated and said she didn't know if she could. She has lost faith in me and us and still seems to think this is just putting too many eggs on the ADD/ADHD basket. I need some advice on how to help her see or understand that I gave her all I had as a ADD/ADHD man but with proper prescriptions and other stratagies, I have so much more to give her?

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  20. Hi Ronnie,

    It's so sad when it comes to this, when couples struggle for so long without answers/solutions that at some point, one or both is just DONE.

    Perhaps it's best to go it alone with the treatment for a while, focus on making solid changes so that she can "see" rather than just have faith. Then, as she sees that maybe there is something to this ADHD thing, she'll start coming around.

    In the meantime, I encourage you to read other posts on this blog. There are some that will resonate for you (read the comments, too! -- you're not alone!).

    Best,
    Gina

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  21. Gina--

    Thanks for this great post.

    I was not diagnosed with ADHD until I was in my 30s. I definitely have noticed, like several of the women here, that my hormones affect my ADHD symptoms. I'm fortunate to have a partner who helps me to be aware when I'm starting to have more issues than normal. While I am grateful to him, I also recognize that we are each responsible for our actions and I cannot lay all the blame on ADHD.

    Behavioral therapy and ADHD coaching can help adults handle their ADHD symptoms--whether they are on meds or not. Some people do really well with medications, but other people are so sensitive to meds that the med roulette is a tough ride. Having a coach can help give you perspective.

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  22. Hi Shanna,

    Thanks so much for your comment. Yes, the Meds Roulette Ride can be a wild one!

    In our local Adult ADHD group in Palo Alto and in my lectures, I try to share strategies for minimizing the whiplash while speeding the learning curve.

    And yes, good coaching and evidence-based strategies can go a long way. For some people, these are hard to come by, especially here in the San Francisco Bay Area. A much better situation on the East Coast, it seems.

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  23. Hey Gina, the link to the PDF version of the book on medication strategies isn't working. I know the general guideline is, "Start Low and Titrate Slow." Is there a guide in your book that I'm just skipping over? Thanks so much for all you do!

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    Replies
    1. Hi Dotty,

      Thanks for bringing that to my attention. Unfortunately, the PDF of my book is no longer available. But you can still read the chapter in the paperback version of the book.

      And, you're welcome!

      best,
      g

      Delete

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