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The Tragic Truth Of Adderall, or “Madderall”

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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

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  1. Betsy Davenport, PhD’s avatar

    Well done, Gina. It is so HARD to obtain really expert diagnosis and treatment for ADHD, even after all this time. It used to be that we couldn’t get doctors to believe it exists; now we can’t get them to believe it co-exists, and that treatment is, as you say, anything but simple.

    Reply

    1. Gina Pera’s avatar

      Thank you, Betsy.

      That doc who called ADHD a “simple” condition — just throw a stimulant at it?

      That was at the American Psychiatric Association confab a few years ago in SF. Where NOT ONE lecture was devoted to ADHD.

      Only pre-conference “industry supported” lectures on ADHD (excellent, by top experts). But of course many of the docs attending the conference through a pharma-sponsored lecture beneath them.

      What a big, sticky, complicated mess.

    2. Betsy Davenport, PhD’s avatar

      In my experience, most of the APA conferences are peopled with shrinks clinging to the psychoanalytic model. Nothing wrong with it used properly, but it takes little notice of brain research, for example.

      Reply

      1. Gina Pera’s avatar

        Yes, that seemed to be the case. They were packing it in at the lectures on Borderline Personality Disorder. I think the docs liked the drama; plus it made them feel like psychiatric sleuths. I just sat there wondering how many people with ADHD were being misdiagnosed as having Bordeline Perosnality Disorder because no one was drawing distinctions.

      2. Jeffs ADD Mind’s avatar

        “Did the poor young man in the NYT story truly not have ADHD, as his parents claim? (…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.) ” – Absolutely spot on! This story could be reported as an ongoing series of stories…with one examining his childhood as seen by teachers and others…examination of others in his family (if he had ADHD…it would be evident in other family members), of the doctors that guided and misguided him, of the way he “played” the doctors, and so on. Of course…I know I’m preaching to the choir on this one. This is a much deeper, multifaceted story that, unfortunately, will never be fully told.

        Reply

        1. Gina Pera’s avatar

          Yes, you’re right, Jeff. There are many facets to this story.

          We cannot depend on the parents or his friends to truly know if this boy had ADHD, or maybe ADHD+ bi-polar.

          And I’ve heard many stories of adults with ADHD not telling the physician the full truth of Adderall’s effect — even to the point of forbidding their partners from contacting the physician, for fear of stopping the “focus.”

          They truly feel it is their only solution, because they never tried another, less problematic stimulant before the Adderall. All they know is that they want the focus that has eluded them throughout their lives. And, sometimes, in the process, they become addicted.

        2. Betsy Davenport, PhD’s avatar

          I’ve always said, high intelligence masks ADHD, and ADHD can mask high intelligence.

          When life’s demands increase, as with career and family, and in the case of women, career and FAMILY, the “extra” brain power isn’t available anymore and it is inevitable that decreased functioning and/or a crash of sorts comes to pass.

        3. Gina Pera’s avatar

          Excellent summary, Betsy.

        4. devonshire’s avatar

          Betsy, I appreciate your comment. When I started learning about ADHD, I thought it probably applied to me too, but because of the “high-intelligence” I was blessed with, it never showed. Now that I have so many pressures in life, as a very very busy adult, I find that it’s harder to keep my focus, and I am recognizing many of my behaviors to be ADHD like. Yet no professional I’d ever asked agreed. Your statement about high-intelligence masking ADHD and vice versa helps!

        5. Fern V.’s avatar

          Yes Jeff, you may be right about the ADHD creeping up at a later age, but sometimes it’s hard to tell, especially if the young man is out of High School, facing his manhood experiences & challenges, one of those “just becoming a man”, and going through the changes of young adulthood. To this day, I don’t think there’s a definite cure, just like in cancer, there’s ways of making the person feel a little better, worthy or part of this society, but not in a total comfort zone.
          But to prescribe Adderall to someone who may not need it, and cause that person to do something radical, is not to blame the parents, or the patient for not knowing the real reason. That is why they go to a doctor for his/her expertise, and end up in the morgue, the psychiatric ward, or just a plain Joe with an altered brain. Trust me I have and still am living this by watching someone so dear to me.

        6. Roxanna’s avatar

          Thank you, Gina, for your tireless efforts. I don’t know what my husband and I would have done without your guidance. My husband was headed toward a bad end, and the doctor didn’t have a clue. Amazing. We have learned the hard way what you have been lecturing about for many years. I hope others listen to you.

          Reply

        7. James’s avatar

          You nailed it again, Gina. I feel sorry for that young man’s family. Thank you for taking the time to write this. Jamie.

          Reply

        8. Shlomo Dovid Freedman’s avatar

          Thank you again, Gina. I too noticed the story and assumed it was part of the New York Times’ unrelenting attack on ADHD medications the reality of ADHD. I skipped the article completely, though — thank you for bringing it to our attention and for providing your expert commentary.

          Reply

        9. Ruthann’s avatar

          Thank you Gina! David Fee’s Story could have been my son’s. Fortunately, we were able to intervene, with no thanks to the shrinks. This is a story that had to be told. I just hope it doesn’t further damage the legitimacy of ADHD treatment in the public’s eyes. The medications can work so well, when properly administered.

          Reply

        10. FS’s avatar

          This triggers my “PTSD” around my ex-husband getting treatment for his ADHD 10 years ago. The MD refused to listen to me when I tried to tell her that the Adderall was making my husband angry. Over the top angry. He was eating the pills like they were M&Ms and threatening me if I dared to tell the doctor what was happening. Of course he didn’t want his “supply” cut off. I moved back in with my mother because he was scaring me so badly. He ended up losing his job because he shot the bird at his boss. Mind you, he’d never been a “nice” person but that Adderall turned him into a raging scary person. “Madderal” is right. It wasn’t right what happened to him. He was trying to get help, and instead the “help” made everything worse. Frances

          Reply

        11. Julie’s avatar

          My husband is taking Adderall XR and it is NOT working!! I took both of my children off Adderall because it made them angry. Concerta has been much better for them but it doesn’t seem to work for my husband. The Adderall “works” for being able to sit at his desk at work but the side effects are really bad. He can’t sleep, gets easily agitated, becomes verbally aggressive, can’t handle crowds & noise, grinds his teeth, and to offset the affects of Adderall he drinks. His moods are all over the place. If he takes his Adderall he does better at work but home life suffers so he gets down. No Adderall his work life suffers but home is better so he gets down. It’s a vicious cycle and all I can do is take baby steps hoping some day it will get better. Gina has suggested that if he didn’t do well on the Concerta to try the Vyvanse, but that isn’t affordable for us right now. Wish us luck! JS

          Reply

          1. Betsy Davenport, PhD’s avatar

            I do wish you luck. Vyvanse has been the best medicine for my daughter. She took Adderall from age 8 to whenever Vyvanse came out. She preferred the latter.

            Perhaps your husband could be tried on it to see if it is better, and you keep some logs to inform the doctor. Some drug companies will provide medications for reduced cost, and some insurance companies will cough up the money for the more expensive medication if the doctor will make a case for it. Anything less than the best you can obtain is too little.

            It’s exhausting to be the support arm of the situation, especially with kids and spouse with ADHD. I feel for you.

          2. Gina Pera’s avatar

            Doc Bets – I surely appreciate you always lending a hand by sharing your expertise on blogs, news articles, and lists. You have generously performed a great service for the ADHD community ever since I met you (what? 10 years ago?). In particular, I will never forget your early support of my efforts. You have helped me to help so many.

            Gina

          3. Duke’s avatar

            I have ADHD, have since I was a child. Was not a diagnosis back then, they thought it was sugar-related. Graduated top of my classes, though never got treatment until I was an adult.

            I tried Strattera as an adult – it worked but gave bad headaches. Later went to Adderall – and had all the symptoms you mentioned, plus made my heartbeat race uncontrollably during exercise (I am in great physical shape, so it was definitely the new medicine). I stopped taking it and asked my doc for alternatives. Doctor switched me to Vyvanse and it’s amazing…none of the previous side effects and to this day still solves all the symptoms. Yes, expensive, but insurance covers it. It’s only been out a few years, so time will tell what other side effects this may have later. But for now, it’s working great. Vyvanse also has a patient assistance program to help offset the cost – your doctor might have information and script cards for that like mine did.

          4. Lana Lockhart-Ezzeir’s avatar

            http://www.goodrx.com/
            Really works. My Psychiatrist recommended this and there is a big discount on many medications without any sneaky tricks. Also COSTCO & SAM’S pharmacy’s are open to the public and sometimes are considerably lower.

          5. Gina Pera’s avatar

            Hi Lana, Yes, that’s a helpful website!

            Also Costco doesn’t require membership to purchase Rx.

            Thanks for sharing.
            g

          6. Andrew’s avatar

            I have no problem getting medication for my children or myself but getting my HMO or the schools to give us support in other ways has been my biggest frustration. They definitely believe in the “throw medication at the disorder” mentality. I was lucky in that my primary care physician is thorough and referred me out a specialist for the medicine or I’d probably give up. However, I am in a battle between the school and HMO with both of them pointing the finger at each other saying the other is responsible for behavioral training.

            With regards to Jeff and his story, my parents still refuse to believe I am ADHD. I was a great student and always held a job. I am yet another example of somebody that got missed due to my academic performance.

            Reply

            1. Gina Pera’s avatar

              I know what you mean about the HMOs, Andrea. Locally, at our Adult ADHD group, whenever new members join the group and mention their HMO provider, there is a collective groan. Because we know that that HMO can just wear you down until you stop trying. That’s one of the group’s benefits: we act as a cheering section to keep persevering.

              Some HMO’s mentality is very short-term. They expect a high turnover among enrollees (due to job changes, relocations, etc.) and so they don’t focus on long-term benefits. If they did — if they wanted to avoid many of the problems associated with a lifetime of untreated ADHD (hypertension, diabetes, traffic accidents, sleep disorders, etc.) — they would take ADHD treatment seriously.

              Still, the people who have HMOs are usually paying very little for their medical care. So, if they can afford it, I encourage them to go out of system. It’s worth it. Trying to stay “within the system” can be a foolish strategy if one has the cash.

            2. Duke’s avatar

              Andrew,

              Depending on what state you are in, there are laws the schools have to follow to support your child. Many schools actually ignore them (to their later peril). If your school is not supporting your child, talk to them about doing an IEP or a 509 for your child. One is formal, the other is not. Then you can force the school to give your child the help they need. We know this since we work with schools. The HMO is responsible for the medical and mental health of the child. The school is responsible for the education of the child. But they do inter-connect. And that is where those forms and requirements apply. They join the two sides to get the children the best possible chance in education.

              Teachers today handle ADD and ADHD differently than they did 20 or 30 years ago. Many are not trained or capable of dealing with such students unless the student ‘gets medicated help.’ Truth is, plenty of students like myself succeeded in school without meds after very rough learning periods. Went from F’s in elementary school to valedictorian in HS without such help. But I later sought help for ADHD as an adult to deal with work and family responsibilities since they are much more weighty issues than school. It helps considerably.

            3. Kari’s avatar

              Hi,

              Is it possible that Adderall just doesn’t work for some people? My husband is on it and he isn’t more angry but he still can’t control arguing with me or lettinng things go. He still gets distracted by other things. I have noticed a little bit of a difference (as far as being able to focus better) but not as much as I had hoped. His doctor just put him on it the first time and he hasn’t really monitored it at all and when he asks my husband if it is helping, he tells him yes that he feels great! However, he is still saying hurtful things to me. Thanks

              Reply

              1. Gina Pera’s avatar

                Yes, it is definitely true that Adderall “just doesn’t work for some people”. Neither will Ritalin or other medications. The choice of stimulant should be made methodically, with the knowledge that individual neurogenetics mean some Rx will work better than others. I detail this in my book’s chapters on medication. You would do well to read them and ask your husband’s physician to read them, too. ;-)
                http://www.amazon.com/dp/0981548709/?tag=wwwginaperaco-20

              2. Kari’s avatar

                Thanks Gina! I did read that chapter but I am going to reread it because when I read it, my husband wasn’t on the medication yet and I was still so astounded by everything else in the book and how it compared to our marriage so well! I am also hoping to find him a physician or a psychiatrist to monitor the medication he is on. His primary care physician prescribed it for him. He hasn’t been back in almost a year and it was only monitored a couple of times (and that’s only because he has a health issue to go back for). My husband wouldn’t let me go the the appointment either. I like his doctor. I just think my husband needs a psychiatrist or someone that specializes more in these types of medications and will monitor it better. Thanks again for your ideas! :)

                Reply

              3. Alissa’s avatar

                Gina, I just have to stop and thank you so much for your dedication to this topic. You have answered me personally on your other blog so when I googled “Adderall rages” and came to this page I was incredibly comforted that I was able to KNOW who was writing this. Medicine forums are usually so full of bad news, it’s hard to believe it because the people who don’t have a problem aren’t spending time on these forums. I know when you say “first hand experience collecting these stories for 15 years” it’s not just a knee jerk reaction to the things you heard second hand.

                I have read your book, I will reread the medicine chapter and probably be back with questions. Thank you so much for the work you do, it makes a real difference in our little family.

                Reply

                1. Gina Pera’s avatar

                  Thanks for taking the time to write that, Alissa. I appreciate it.

                  Gina

                2. Stuart Rosan D.O.’s avatar

                  I have a unique perspective , since I have been on Adderall for 20 years, and as a Family Doc., wrote more prescriptions than anyone in PA.I also was one of the few family docs involved in the investigational studies nation wide to get Adderall XR evaluated and approved about 20 years ago.
                  However, I monitored my patients well medically and my main focus was treating patient’s mental health (functions-dysfunctions?) to improve their physical health.
                  At least 1/2 of medical problems are stress related , but we keep treating their physical problems -symptoms rather than the cause.My patients did well once I was able to Dx either their ADD,OCD, Depression, Bipolar ,etc and treat accordingly.
                  Most patients know that the stress is killing them , and , that is why so many are going to alternative care. Response to medication.Unfortunately, the medical world doesn’t Care to embrace mental health.
                  I have paid a huge price for thinking outside the box and it is a real shame for so many patients since they did much better both physically and mentally.
                  They were able to comprehend for once in their life how their untreated mental health functions , use specially for those with ADD, was impacting on them.
                  The dilemma is that the only true way of Diagnosing ADD is from the response to medicine , since it truly is physiologic.
                  The other main dilemma is the still significant resistance by the medical world and the politics that has prevented even more awareness ,education and acceptance.
                  Adderall is not for everyone, but trust me , it works the best for most.Most of us would have loved to have Strattera be the one, especially without all the baggage that goes with stimulants, but it doesn’t do it .
                  Hopefully, the future of Adult ADD will be viewed more progressively , with less resistance

                  Reply

                  1. Gina Pera’s avatar

                    Thanks for weighing in, Stuart, and for being an “early adopter.” ;-)

                    I’m going to stick to my point, that I would not recommend Adderall as a first try for anyone — only as the last option. Because I’ve seen too many people go off the rails, and never return. Especially never return to trying a different medication. Adderall can close doors, and sometimes end relationships, jobs, and no doubt some lives.

                    Trouble is, most of the times MDs don’t hear about this. People just don’t go back and are deemed “non-compliant” and “non-adherent.”

                    Thanks for serving this population.

                    Gina

                  2. Constance Wilds’s avatar

                    My psychiatrist prescribed Adderall for my PTSD & depression, which caused me to have problems with concentration. He indicated that Adderall had worked well for many of his PTSD patients. I developed swelling in my ankles after about a month of use (20 mg 2x/day). Further, the tops of my feet itched terribly. There were no problems found with my kidneys or heart. My family physician said that this seemed like an allergy. My psychiatrist only indicated that he had never hear of someone having this reaction to Adderall. Also, I found myself becoming extremely angry to the point of violence. I have never been an angry or violent person. When I told my psychiatrist about the anger problems and how concerned I was about them, he blamed it on my traumatic past. Finally, I stopped taking the Adderall because of the ankle swelling and was put on Ridalin instead. Since then, I have had no ankle swelling and no further anger/violence problems.

                    I am certain all of these issues were caused by the Adderall. Physicians need to educate themselves about all of the potential side effects of a medication and be open to the fact that everyone is different and some people can suffer side effects that many others do not. I never knew about the connection between Adderall and anger problems until I read about it on the internet. My doctor never once connected the two.

                    Reply

                    1. Gina Pera’s avatar

                      Hi Constance,

                      I’m sorry to hear of your experience. Your MD might be onto something; oftentimes ADHD is misdiagnosed as PTSD, so it would make sense that sometimes a stimulant medication would help.

                      It’s too bad that he didn’t see the physical reaction to the meds, though, and instead blamed it on your traumatic past. In what world does this make sense? Especially given that there are so many alternatives when it comes to stimulant. Not only that, but the dopamine system affects all kinds of physiological processes — not just “focus.”

                      Yes, you are right. Physicians need to educate themselves about the potential side effects of all medications, most especially including Adderall. But you would not believe how much grief I get when I try to do this. Almost all docs have tried to talk me out of this, as if I’ve imagined it. Instead, I’ve been closely listening to first-person stories for almost 15 years.

                      So, I gave up educating the physicians and started educating the patients. That’s why I detailed medication treatments for ADHD in my book (three chapters worth) — to educate the patients who would then, I hope, educate their physicians.

                      Good for you for listening to your body!

                      g

                    2. Constance Wilds’s avatar

                      I am now on Rydalin due to problems with Adderall, but this drug is not as effective for me. I am wondering if anyone has used a drug similar to Adderall without the adverse effects?

                      Thanks.

                      Reply

                      1. Gina Pera’s avatar

                        Hi Constance,

                        Congratulations on discovering the diagnosis. It is extremely hard to work on solutions until the correct diagnosis is in place.

                        Yes, due to genetics, it might be that one or the other class of stimulants (methylphenidate or amphetamines) work better for you. If Ritalin did not prove effective (and you tried the brand, at a sufficient dose, not the generic), it might be that the amphetamines are a better bet for you. In addition to Adderall, the amphetamine choices include Dexedrine (an older Rx that still works best for a minority of people) and a newer Rx called Vyvanse, which is delivered slowly and steadily into the blood stream over a longer period of time than Adderall or Adderall XR. It’s well worth asking your MD about it.

                        Good luck,
                        Gina

                      2. Constance Wilds’s avatar

                        It never occurred to me that I might have ADHD. I have been diagnosed with: Bipolar II disorder, Borderline Personality Disorder, Depression, Anxiety and PTSD (not all at the same time and not all by the same psychiatrist). ADHD was never a consideration. I have a traumatic past, and have attempted suicide on numerous occasions as well as going through a period of self-harming. All of the diagnoses seemed to fit except ADHD. However, the most relief I have ever experienced has been as the result of a stimulant medication. Unfortunately, Adderall, while extremely helpful to me in many ways, caused side effects that made it impossible for me to use.

                        Reply

                      3. Leah’s avatar

                        I’m currently a junior in highschool and I was diagnosed with ADD in eighth grade. I began taking concerta, but due to it making me sweat a lot, my doctor (not very helpful) switched me to adderall in 9th grade and I have been on it ever since. I have never really noticed many side effects of my adhd medicine besides dry mouth and sweatstains, that is until this year. I did some research and pieced it together. Whenever I take breaks in school and go off the medicine and come back on it, i get so depressed the first week and i’m generally a super always happy type person. It wasn’t till over Christmas break when I went off it that I noticed how miserable the medicine made me. I get stomach aches when i’m on it, i’m not as friendly, i’m quieter, i’m sadder, i sweat a ton, i’m way more irritable, and almost in a sense it makes me so much more focused on myself. I have been crying the past few days over how much I hate taking the miserable drug, but half way through my junior year in highschool is no time to start experimenting i feel like because I need to get good grades so I can get a scholarship but at the same time I can’t stay on this drug that changes who I am…. I’m nervous about letting it go what if the remedies don’t work? Please help me out/contact me/ give me any more advice I’m desperate to be care free again!!

                        Reply

                        1. Gina Pera’s avatar

                          Hi Leah,

                          You shouldn’t have to tolerate such extreme side effects in order to get benefits from the medication.

                          I encourage you to look into other options with your physician. Adderall is an older formulation, and it has a higher side effect profile than the newer formulations, such as Vyvanse.

                          Remember, too, that your body and brain are still developing. That means that a medication that worked for you last year might not work now. Some girls and women also need a little higher dosage during the menstrual periods.

                          When you say that, off medication, you are a “super happy” person, that could possibly indicate that untreated ADHD allows you to approach life more superficially, to gloss over challenges, and to not see future consequences. You might feel “happier” at such times, but you might not like the eventual consequences.

                          At the same time, too high a dose of Adderall could create this feeling of “depression,” too.

                          It is hard, at your age, to know “who you are.” Are you your “true self” when your symptoms are not medicated — or is the real you being obscured by your ADHD symptoms?

                          When the “real me” goes around my house without wearing my glasses, I can fool myself into believing that the house is neat and tidy. Then I put on my glasses, and see something else. :-)

                          I hope you can find a counselor or physician you can discuss these issues with. It’s important.

                          No one can be “care free” forever. At some point, consequences will come up to bite you in the butt. Don’t let that happen! The trick is balancing responsibility and pleasure.

                          Good luck,
                          g

                        2. EmilyRay’s avatar

                          I am transgender, and have been misdiagnosed as having BPD despite the clear guidance in the DSM to not count the traits if they are better accounted for by an existing Axis I diagnosis such as Gender Dysphoria, and ADHD. It has ruined my relationships with the doctors I need to treat me.

                          Reply

                          1. Gina Pera’s avatar

                            Argh, I am so sorry to hear that, Emily.

                            I know this “brain stuff” is complicated, and there are no easy answers.

                            But it’s the lack of intellectual curiosity that gets to me.

                            In my experience, the clearer people with ADHD are about their challenges and the more validation they receive for their perception, the better their chance of finding a doc who can help them. So, seek all the validation you need. One site I like is http://www.ADDforums.com

                            best,
                            g

                          2. Screen name here’s avatar

                            I’m an over 50 male diagnosed with adult ADD/inattentive and prescribed Adderall for a bit over a year now.

                            Diagnosis was spurred by a younger relative who was diagnosed, and a belated recognition by a sibling that we kids had ALL had various undiagnosed forms of ADD (1960’s-70’s, not a “fashionable” diagnosis back then…). We were all bright enough kids to get by anyhow, and it didn’t start to pile up to impossible levels until later in life, as noted by others here.

                            Both our parents had PHD’s, but I’d say my dad had ADD inattentive and compensated by a very narrow hyper focus on work, mom had at least a mild case of ADD inattentive as well. Supporting family and different social norms got them through school, but raising children pretty much pushed them past being able to cope too, looking at our home life in retrospect (and from far enough away in time to see it a bit more clearly than when it was happening!).

                            This article is pretty accurate as to my experience- Adderall is the all purpose noodle, and “throw the spaghetti at the wall and see if it sticks”. If it isn’t sticking, throw MORE spaghetti at the wall! STILL not sticking? THROW MORE AND THROW IT HARDER!!!

                            I went from experiencing some help with inatentive symptoms for the first 3 or so months on Adderall to progressively less and less help, telling my physician what was occurring and having the dose bumped up- and up, and up again.

                            The focus on important tasks became random flashes of hyper focus, the unwanted euphoric effects obscured the correct emotional re-enforcement for properly done work or from previously enjoyable leisure activities, physical effects such as muscle tension headaches, changes in the way my teeth met from constant grinding. Something that seems to be VERY like Tourette’s syndrome set in along with a constant ANGER that makes me want to avoid people I like because of the way I felt and might treat them.

                            I tell my primary physician (he’s an internist, and I really like and respect him medically otherwise, and as person) what is going on. He minimizes it, suggests other scenarios and ups my dose. He’s a good man with broken bones, infections, hernia and other straight forward physical issues, but totally out to sea on this.

                            So here I am, with a medically approved amphetamine addiction that doesn’t address my original issue effectively- And is causing dramatically BAD, unpleasant things to happen in my personal and work life. I won’t even pick up the phone to talk to my “significant other” many evenings, the downside of the day’s meds make my behavior far too poor for human company.

                            I’m on this page while researching the odds of unilaterally quitting Adderall cold turkey and NOT replacing it with other drugs. My research on non amphetamine medications had led me to ask for a trial of Provigil- Which my insurer denied. I have NO desire to substitute a different stimulant formulation for Adderall, speed is speed, even if it does come from big pharma rather than Walter White.

                            Don’t know what else you could suggest, but hey, at least I got this off my chest.

                            Reply

                            1. Gina Pera’s avatar

                              Hi B.,

                              Excuse me while I pound some sand. What you describe is inexcusable. It’s abhorrent. It should be actionable.

                              In what other disease category would this kind of reckless monitoring of care be considered okay?

                              Can you get to a board-certified psychiatrist? Not that this is a guarantee they will know what’s what with ADHD meds, but it might be better than your internist.

                              If that’s a problem, ask your internist to consider prescribing a less-problematic stimulant, such as Concerta, Daytrana, or Vyvanse. If you’ve never been given a trial of the MPH medication (Adderall is AMP), that is worth a try.

                              I’ve not met one person with ADHD for whom Provigil has been helpful. Not saying it’s impossible, but you’d think in 15 years and talking with thousands of folks, I’d have heard it. Provigil is a narcolepsy medication that is sometimes used for ADHD, but not sure who and why.

                              If you feel that Adderall helped you to some degree (minus the nasty side effects), it might be that Vyvanse will work well for you.

                              Then again, it could be that Adderall has exacerbated an anxiety condition, and that will need joint treatment with the ADHD.

                              Still, I’d start with the Vyvanse. Please ask your MD to give you trial or refer you to a physician who cares to be a more responsible prescriber. It’s something of a joke in our local group, that when people complain of bad side effects, their MD says to “double the dosage.” But it’s not that funny. In fact, it’s tragic. Sometimes there will be side effects in the beginning that go away. But that’s not what you are describing.

                              I recommend that you read my book’s chapter on medication — and maybe give a copy to your doc, if you’re stuck with him. It can make a huge difference in your understanding of how ADHD should be treated medically. It’s clearly written, and bulleted. Not a lot of ponderous prose. :-)

                              http://www.amazon.com/dp/0981548709/?tag=wwwginaperaco-20

                              Good luck! Demand better!
                              Gina

                            2. Screen name here’s avatar

                              Thanks for the comment-

                              I had another visit with my MD, and have started Concerta 54mg as of this morning. Seems to be a little calmer- I’m about to try working under the influence, we shall see. Rather surprised I wasn’t started at a lower dose and then worked up. I weigh about 200 to 210 lb., usually.

                              Asked my MD what his next plan was if this change in meds doesn’t produce a state of mind suitable for work and also allow allow “normal” behavior around other people… He didn’t have much to suggest, so I requested he immediately START looking for a psychiatrist with specialty or at least a lot of experience with adult ADD/inattentive. He agreed to look into finding who was available and could be used under my insurance.

                              Down side, he said it would likely be 3 to 4 months before I ever got to talk to a psych. That’s not going to be a good thing if I really need one! He did suggest talking to a neurologist, not sure how useful that’s going to be?!

                              There’s this tactic I’ve heard of for cutting down wait time in getting to see an MD at the ER: You grab your left arm, and start talking about sudden chest pains, you can’t get your breath and “Oh, my left arm has just gone “funny”!”

                              I suspect the psych equivalent of such a tactic is not a good choice for keeping one’s various “safety sensitive position” related licenses and professional standing.

                              Oh well, the news just informed people in (major US city I lived in) that it will be 3 to 15 minutes before our local 911 calls are answered. That’s ANSWERED. As in, the operator picks up the phone. Hope we all don’t have any actual emergencies- Because the fire/police/EMS will be another 5 to 30 minutes responding.

                              Ah, brave new world! Take a number and a seat…

                              Reply

                              1. Gina Pera’s avatar

                                Yes, it’s a problem. A shortage of psychiatrists, made worse (or perhaps caused) by low reimbursement rates.

                                Most of the good psychiatrists I know are scrambling to get out of the business.

                                The sad fact is that, to get the best results, people with ADHD often have to be very pro-active.

                                I encourage you to start by reading my book. The medication chapter alone is worth the price of admission.

                                http://www.amazon.com/dp/0981548709/?tag=wwwginaperaco-20

                                That doc should NOT have started you on 54 mg. Pardon my French, but that is imbecilic. The dosage has absolutely nothing to do with weight or size.

                                Yes, I don’t think that strategy will work at the psychiatric ER. :-)

                                Good luck!
                                g

                              2. Screen name here’s avatar

                                Well, Concerta 54 mg was WAY too much.

                                2 days were wasted on the experiment, after the first I messaged my MD that I wouldn’t drive or use power tools at that level and he sent me a message suggesting I BREAK A CONCERTA IN TWO?!

                                Fortunately I had read the drug information sheet and knew better. After another medical message my MD did too, and I got a Concerta Rx at 27mg instead. 6 days into that now.

                                It’s certainly not a magic pill that makes me into a normal person, whatever that is. At least I don’t have tachycardia and it feels safe to drive or use a tool now. More later, after I see how much work gets done and what quality level my output has.

                                Reply

                                1. Gina Pera’s avatar

                                  Unbelievable, the stupidity of that physician. No wonder we’ve seen such a backlash against ADHD. Multiply his recklessness times thousands…..shocking.

                                  But yes, there’s not going to be the “easy fix” that the ADHD-denyers proclaim. But you should feel significant improvement in your self-regulation (of focus, effort, motivation, emotion, etc.), and it should get better over time.

                                  Avoid coffee and cigarettes. Get some sleep. Good luck!
                                  g

                                2. Joy’s avatar

                                  i think the key is to find what works for you. Adderall might get a bad name, but i am doing well on a very low dose. My dr. started me on Vyvanse 30 and i i progressed to a 40 and was a crying, dark, mess. always felt like i had hangover in the morning when taking vyvanse…people at work commented that i was not myself. then i tried ritalin and foclin… i was depressed and i just couldnt focus…. then i tried Adderall…i have the same sleepless night as with the other drugs. i had insomnia before meds so not sure its any worse, but at least i feel like me… im not constantly raging and sad….i get my work done…and feel fine in the mornings

                                  i am a teacher of children with special needs and just like i tell their parents to keep a journal about their child and talk to the dr…..we the add population need to take care to find what works for us…and not knock what works for some and not others…

                                  Reply

                                  1. Gina Pera’s avatar

                                    Thanks for comment, Joy. I’m glad you found something that you think works for you. But if you are having “the same sleepless night,” then perhaps you should continue working to improve your medical treatment. ADHD itself is associated with sleep disorders, and they require targeted treatment.

                                    Obviously, the key is finding what works for the individual. That is the entire point of my book’s chapters on medication. And some people will never find that if they start with Adderall, find its side effects intolerable, and assume that is the nature of medical treatment for ADHD (that is, the treatment is worse then the condition).

                                    This is a nuanced subject, with plenty of gray area. But I’ve seen too much damage from Adderall not to repeat the caution I’ve repeated for years: For some people, it might work better than other options. But for many, it can be a huge problem.

                                    tx
                                    g

                                  2. Emily’s avatar

                                    As an almost 40 year old mother of two that was just recently, finally diagnosed with add after decades of struggles, adderal has been a godsend. Although my dr had initially prescribed alternatives to this medication I just couldn’t afford them. Adderal isn’t covered either but the 20 dollar price tag was acceptable. It has changed my life. I’m happier now than I’ve ever been because I feel like my brain is working for me not against me. I take the minimum dosage and I have no intention of abusing the medication that I feel saved my sanity. I’ve never been happier or felt more stable.

                                    Reply

                                    1. Gina Pera’s avatar

                                      I’m happy to hear that, Emily. Adderall does work well for many people. It’s just all the problematic angles to it that has created such a backlash against the very idea of ADHD itself.

                                      Humans have always abused stimulants, as far as I can tell. In 1991, one study found that 19 percent of medical students surveyed used cocaine or amphetamines.

                                      The general public always has a hard time treading gray area. Understanding that a medication that can lead to addiction for some people but higher functioning for others….difficult.

                                      You said you’ve just started taking it recently. Some people find that Adderall becomes more problematic over time. Typically about 2-3 months. So if you notice something is “off,” that might be it. As for costs, most of the pharma companies have patient assistance programs to those who financially qualify. So, that shouldn’t be an obstacle for you.

                                      take care,
                                      g

                                    2. Mo’s avatar

                                      I’ve been in college for about 8 and a half years, and for most of that time, especially in recent years, I’ve dodged/avoided reading the classroom material for a variety of reasons, I had severe and chronic procrastination problems in which my mind wouldn’t think clearly until by the time I was nearing a deadline, I had severe and chronic problems with time management, I’d have mood swings, I’d be aggressive at times, etc. About 2 months ago, I went online and checked the symptoms and it matched up with ADHD almost perfectly. I wrote a list of every symptom that I’d experienced and it had AT LEAST 20 ADHD symptoms on there.

                                      I went to a psychiatrist and she diagnosed me with 1) paranoia (because I felt like government snipers were outside of my window-to my credit, it wasn’t a far-fetched notion given that the US government has assassinated and murdered people before, including recently) and 2) “mild” ADHD. She said that I had mild ADHD and that my case was a rare case because usually symptoms of ADHD would be more apparent and noticeable at earlier ages, like in elementary school, middle school etc., which in general I didn’t notice or observe. My primary reason for going to a psychiatrist was because I wanted Adderall, to deal with my inability to focus/concentrate on my school work (that I was finishing up for college) and internship work (that I was also doing for college) and also, to considerably diminish my procrastinating ways, and a variety of other reasons.

                                      Ultimately, she prescribed me Guanfacine, which is a generic Tenex. It’s meant for ADHD, but also to treat high blood pressure. She prescribed it for my anxiety, my quick temper (ADHD), and overall, to regulate my emotions and behavior, to calm me down. It’s been about 6 days and I haven’t noticed anything yet, but some dizziness (a side effect). Still, I’m a little discouraged and frustrated at the fact that I went in there for Adderall to address my lack of focus/concentration, procrastination, poor listening skills, easily distracted, utterly disorganized, unable to think clearly and thoughtfully-especially on the spot, etc. All of these and more, are the reasons why I went to see a psychiatrist, instead, I feel like I was given medicine for something that wouldn’t effectively take care and address my main issues/ailments.

                                      Reply

                                      1. Gina Pera’s avatar

                                        I understand your frustration, but I can also understand the physician’s actions. Too often, patients who go in asking for Adderall are what is called “drug seekers.” That’s because Adderall is the most highly abused (and abuseable) of the stimulant medications.

                                        Instead of asking specifically for Adderall, it might have gone better if you’d asked for an evaluation, detailed your history, specifically asked about ADHD, and see what the doc recommended. If you’d done a little more research first on the medications used to treat ADHD, you could have had a conversation on the choice she offered.

                                        For some people with ADHD-related anger/irritability, Tenex does help. But I’ve never heard of it helping with the full range of symptoms.

                                        When you go back, you can report that none of your target symptoms have been addressed. But I recommend that you educate yourself first. My book offers guidelines for patients and physicians alike on selecting and titrating medications for ADHD:

                                        http://www.amazon.com/dp/0981548709/?tag=wwwginaperaco-20

                                        Good luck,
                                        Gina

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