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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 15 of 15. This is the beginning of the thread.
Posted by AOB on June 19, 2003, at 19:03:07
My son(age 21)is lost in a maze of diagnosis, comorbidity and medications. His survival out in the world is seriously in doubt because of a total lack of drive. In looking for answers, I've come across the drugs Adrafinil and Provigil. Light bulbs went off when I started reading about the effects these drugs may have on the brain. The description of what the ventral striatum area contols is almost an exact definition of what my son lacks - cognitive flexibility, coherence, vigor, goal oriented behavior and associative learning. Has anyone seen an increase of drive or setting and attaining goals or sustaining effort on Adrafinil, Provigil or other meds?
He definitely has a history of some sort of PDD. He matches so many symptoms in the DSM but does not match any diagnosis definitively. The psychologist who treated him for years referred to his diagnosis as spaghetti. Diagnosis history includes Asperger's, ADD, bipolar, depression, ODD and depression. Meds seem to lead to only temporary improvement or change. He has been on so many different meds I honestly don't know the difference between symptoms and side efffects.
If he has Asperger's how can he be a pathological liar? How can his early language skills be classic hyperlexic but didn't read until age 7 and has good comprehension? How can he have ODD but has never been in any real trouble at school or with the police? How can he be bipolar but never really manic? The huge spread between high verbal IQ 125 and low performance IQ 72 result in expectations being too high or too low. The resulting frustration has led to some of his seething anger but does not really explain his temper outbursts. Positve reinforcement doesn't work at all, he rebuffs and dismisses positive comments.
He got through high school with lots of prodding and case management. Since then he has been unable to successfully complete classes or keep a job, or stay in agency programs. Late in high school Risperdal was added to his mix of meds. Since then he has gained a lot of weight, overeats, sleeps a lot and complains of lack of feelings. Does this sound familiar to anyone? I think Risperdal is making things worse - has anyone experienced this also? Currently he is on Risperdal and Zoloft.
Posted by Dinah on June 19, 2003, at 20:09:12
In reply to Lack of drive, posted by AOB on June 19, 2003, at 19:03:07
What he complains of doesn't seem unusual for psych meds. They are notorious for robbing you of motivation and emotion, and contributing to apathy. You might want to post your specific medication questions on the medication board, Psycho-Babble.
Unfortunately diagnosis in psychiatry.... Well to put it as kindly as possible, it is more of an art than a science. To put it less kindly, the diagnostic categories leave a lot to be desired in describing actual patients. A fair number of people are a pinch of that and a dash of this.
It must be frustrating to you, as his mother. Do you feel comfortable with his treatment team?
Posted by whiterabbit on June 19, 2003, at 21:22:30
In reply to Lack of drive, posted by AOB on June 19, 2003, at 19:03:07
At the age of 43 I've finally been diagnosed correctly with ADD. (I have some other stuff going on too but the ADD I'm sure about.) I never suspected such a thing because I had the impression that hyperactivity is always a symptom and that people with ADD are incapable of training their attention on anything for an extended period. Turns out that both of these things are untrue. People with ADD are quite capable of focusing on anything IF they're interested in it. And the type of ADD I've been diagnosed with does not display hyperactivity as a symptom. I'm getting the impression that your son may also a specific type of ADD.
I encourage you to read "Healing ADD" by Daniel Amen MD. With the help of 3-D brain scanning, he's been able to isolate SIX different types of ADD. The book has valuable information on symptoms, evaluation and treatment. Dr. Amen also has a website at www.brainplace.com where he posts the latest medical breakthroughs in ADD treatment.
Although your son is no longer an adolescent he might get the best care from a psychiatrist who specializes in adolescent medicine, as mine does.
He's my fourth psychiatrist and picked up on my symptoms on the very first visit! At first I was a little skeptical but as soon as I started reading Dr. Amen's book and completed the self-evaluation to determine the presence and type of ADD, I was SHOCKED to see my symptoms described in such awesome detail. Shocked! Now I'm taking medication for ADD and can already tell the difference in my focus and concentration. Just incredible.
-Gracie
Posted by AOB on June 20, 2003, at 8:12:39
In reply to Re: Lack of drive, posted by Dinah on June 19, 2003, at 20:09:12
I don't know much about his treatment team. He moved away to a life skills program to learn to be more independent. He dropped out of that too. He has some maintenance services - meds, money and emergency only. We phone, write, and email frequently. I've talked to his psychiatrist and psychologist but am really out of the loop. Both seem to be very good but they see him at a low fuctioning level. They don't see the hints of potential he showed before Risperdal. He gets very irritable if he skips doses so that reinforces the idea that it works.
The lack of drive is not a meds issue. He was born without drive, risperidone just makes it worse. Getting him to work with OT and PT, roll over or walk took great effort and creativity. His therapists had never seen any child quite so disnterested in mobility. But now he is not an adorable infant, he's a miserable young man, living off SSI and doing nothing.
Posted by Eddie Sylvano on June 20, 2003, at 9:08:24
In reply to Re: Lack of drive, posted by whiterabbit on June 19, 2003, at 21:22:30
Turns out that both of these things are untrue. People with ADD are quite capable of focusing on anything IF they're interested in it. And the type of ADD I've been diagnosed with does not display hyperactivity as a symptom.
-----------------I have a feeling that I'm very similar to you in this regard. A lot of the cognitive symptoms of ADD describe me well, but I'm not particularly hyperactive or difficult to manage. I just cannot concentrate on things that bore me. I can only do many things if I put them off until the deadline pressures give me enough motivation to focus. I forget things very easily (sometimes within seconds). I have no attention to detail, and my life memories are pretty sketchy. I'm an intelligent person, but was a lousy student after about 4th grade (once school began to focus on memory instead of concepts). I have a high need for stimulation as well (fidgeting, running my index fingernails in circles over my thumb pads). I can't use the toilet or eat alone without something to read. The litany goes on and on. I'm supposed to see a pdoc in a couple of months, so maybe I'll finally get a diagnosis. My PCP will only try SSRIs. Are you on a stimulant, or something like strattera? If you've been on an SSRI, did you find that it made the ADD worse?
Posted by AOB on June 20, 2003, at 9:20:04
In reply to Re: Lack of drive, posted by whiterabbit on June 19, 2003, at 21:22:30
My son was diagnosed with ADD without hyperactivity in 7th grade. Also, his older sister and cousin have ADD with depression. I read a lot early on - in the '70s and '80s. I'll definitely look into Healing ADD. It might be something my son would read - he reads a LOT. He was on Cylert, Ritalin and Concerta on and off for about 7 years. The biggest change was in his hand writing, it became legible. But he always stopped responding and became more irritable. Don't think we ever got the comorbidity issue diagnosed correctly, therefore the meds combinations never really worked.
It doesn't help that he is seeing his 7th psychiatrist. That is mainly due to hospitalizations in 3 different facilities and insurance issues with a few cases of incompetence(i.e. med changes w/o charting changes etc). There is no hope of finding an adolescent psychiatrist, he is in a very small town.
Congratulations on finding a treatment that works for you. Good luck!
Posted by yesac on June 20, 2003, at 10:01:37
In reply to Re: Lack of drive » whiterabbit, posted by Eddie Sylvano on June 20, 2003, at 9:08:24
I have wondered a bit over the years if I have some kind of low-level ADD. I do not have problems with forgetting stuff, and I do actually pay a lot of attention to detail - but almost too much. In fact, I am almost distracted by details and can't focus on what is really going on. I am very distracted by noises, etc - for example, I have a very hard time reading when there is any noise. I also am very bored by many things and would say that I need a high level of stimulation to pay attention. Sometimes after a conversation with someone, or listening to some kind of lecture, I actually have no idea what it was about. But, like you both said, I can focus on things when they truly interest me. I can't stand commercials and often feel like I need to get up to go do something during those few minutes or else I'll be too bored. Oh, and I'm extremely fidgety (but certainly not hyperactive)! Hmmm... I wonder...
Posted by whiterabbit on June 20, 2003, at 11:36:02
In reply to Re: Lack of drive, posted by yesac on June 20, 2003, at 10:01:37
Eddie & Casey - I think both of you would find Dr. Amen's book extremely helpful, as many of the behaviors you're both describing sound like ADD symptoms.
I wish somebody had picked up on these symptoms before. As for myself, I didn't know my odd little habits WERE symptoms...I thought they were "just me". Like my routine of reading two or three books at the same time - I rotate books when I get bored with the storyline. Or my inability to just sit and watch a 2-hour movie -
I HAVE to be fiddling with something else at the same time. And my dislike for cards and board games, which requires extended concentration. The way I can get lost driving to a place I've been several times before. The people who get irritated with me for not listening, the things I break from misuse or not reading directions, the hundreds of projects I've started and never finished. The book even mentioned my habit of being unable to sleep at night unless I had a fan or some other "white noise" in the room.I was amused when my psychiatrist prescribed dextroamphetamine - 10 mg three times a day - because I had been honest about my substance abuse problems. But being in the medical profession myself, I recognized his willingness to prescribe this drug for me as confidence rather than incompetence. From Dr. Amen's book I've learned that the reason for providing a stimulant is to fire up the under-active part of the brain - the frontal lobe I believe - causing the ADD symptoms. The really exciting part, to me anyway, is that this treatment is not theory or conjecture - with 3-D brain scanning it's possible to actually watch the brain's activity
and response to medication. It's cutting-edge medical science, just awesome.Incidentally, not only am I not abusing the dextroamphetamine, it's still sometimes difficult for me to take all three doses because I've been self-medicating with gallons of espresso for years, and it's a well-entrenched habit. So I'm trying to cut back on the caffeine so I don't get jittery.
I'm still taking 60 mg daily of Paxil but my new psychiatrist told me that he intends to get me off of it, obviously he's not comfortable with that (not sure why yet). He didn't decrease the dosage I've been taking because he didn't want to add more than one variable at a time during the trial phase of dextroamphetamine. I can tell this guy is pretty sharp and I already have a great deal of faith in him.
If you become convinced that ADD is a definate possibility, there must be some research you can do, some way to find a psychiatrist who specializes in ADD and stays informed of the latest medical breakthroughs. I keep thinking of a sentence in Dr. Amen's book: "With proper diagnosis and treatment, it is possible to change the course of a person's whole life."
Fingers crossed-
Gracie
Posted by Eddie Sylvano on June 20, 2003, at 11:58:00
In reply to Diagnosing ADD, posted by whiterabbit on June 20, 2003, at 11:36:02
And my dislike for cards and board games, which requires extended concentration.
------------------I second that. I was the social pariah at my family vacation for abstaining from their marathon card games.
I'm always surprised to hear that it's my turn at Scrabble.
Posted by gabbix2 on June 20, 2003, at 12:56:46
In reply to Re: Diagnosing ADD » whiterabbit, posted by Eddie Sylvano on June 20, 2003, at 11:58:00
I second everything you've said.
Only recently have other people not naming names but my family ; ) my not playing card games, or sitting through movies without taking frequent breaks, because now I have a "label" I guess I should be happy they finally accept it but....
growl...I think its really easy to miss the symptoms if you aren't hyperactive (which I am definitely not)
or rich enough to indulge 18 different things at the same time and just look multifaceted.
Posted by Eddie Sylvano on June 20, 2003, at 13:18:47
In reply to Diagnosing ADD, posted by whiterabbit on June 20, 2003, at 11:36:02
Have you ever found that ADD makes it more difficult for you to "stay in the moment" when you're having sex? It requires a certain level of concentration that I can't always manage, and I wonder if drug treatment would help.
Posted by yesac on June 20, 2003, at 14:00:10
In reply to Diagnosing ADD, posted by whiterabbit on June 20, 2003, at 11:36:02
> Eddie & Casey - I think both of you would find Dr. Amen's book extremely helpful, as many of the behaviors you're both describing sound like ADD symptoms.
Wow! How did you figure out it was me so quickly? And here I am trying to conceal my true identity ;) Hopefully, the people that I am really trying to conceal my posts from aren't as smart and perceptive as you are!
>
>The book even mentioned my habit of being unable to sleep at night unless I had a fan or some other "white noise" in the room.I totally have needed a fan for years and years. I've always felt a little weird about that, especially when I was younger and it was the middle of winter - freezing cold in NH - and there I'd be turning on my faithful fan every night! I made it through an entire year without the fan last year (not my choice, it was due to external circumstances), but the second I could start sleeping with a fan again I did not hesitate!
>
> I've been self-medicating with gallons of espresso for years, and it's a well-entrenched habit. So I'm trying to cut back on the caffeine so I don't get jittery.I wrote a question on the medication board about my recent increased craving for coffee/caffeine, and someone (babs) mentioned that it could be due to ADD. But I've never had the caffeine craving before, only since I've started Parnate, so I'm not sure what to make of that.
Posted by Dinah on June 20, 2003, at 21:15:43
In reply to Re: Diagnosing ADD » whiterabbit, posted by yesac on June 20, 2003, at 14:00:10
Thank you. :) And Gracie. And I'm a dunce, I fear.
Posted by whiterabbit on June 21, 2003, at 0:37:54
In reply to Amen WhiteRabbit, posted by gabbix2 on June 20, 2003, at 12:56:46
Misdiagnosis is not really an accurate term yet when referring to ADD type because this is all new stuff - the ability to isolate six different types of ADD through 3-D brain scanning is a result of the very latest medical technology, it's comparatively new information.Now the hard part is finding a doctor who keeps up with the latest medical research and is willing to take advantage of it. The use of computerized brain scanning in psychiatry is fairly new-age and knowing doctors like I do, you
won't find psychiatrists lining up at the door to treat you with the latest medications according to the most current information in groundbreaking medical technology. In this age of malpractice lawsuits many doctors are wary of venturing far from well-known, safely established methods of treatment. And unfortunately, just like people in every other profession on earth and for a great variety of reasons, some doctors are just not very good at what they do. They get bored and burned out and distracted and addicted and senile and fall behind and succumb to every other human weakness like the rest of us. Sometimes you get an informed, interested, compassionate and competent physician the first time around, but often you have to weed out a few rejects first.
It's a frustrating process but hey, we're talking about your health. What's more important than good health? Would you sell your eyesight for a million dollars? Your health is everything. You need a good doctor.
-Gracie
P.S. Did someone mention sex? I've heard of this thing called sex, can't recall too much about it though...
Posted by yesac on June 21, 2003, at 14:46:52
In reply to Re: Diagnosing ADD » yesac, posted by Dinah on June 20, 2003, at 21:15:43
> Thank you. :) And Gracie. And I'm a dunce, I fear.
Why are you a dunce??
This is the end of the thread.
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