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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 mtdewcmu on July 2, 2011, at 22:27:48
Hi, all. I haven't been posting lately. I think I have finally found a disorder that accounts for all my symptoms. It wasn't easy to find, because it is largely absent from the current version of the DSM, and it is only really described in the psychiatric literature. There is a good chance it will appear in the upcoming DSM-V, though.
In the DSM-IV nomenclature, it's a sub-subtype of ADHD, Predominantly Inattentive Type in which hyperactivity and impulsivity are completely absent, and in fact, there is hypoactivity and excessive hesitation. It's called Sluggish Cognitive Tempo (SCT). It's so different from traditional ADHD that some researchers believe it is a separate disorder (and I agree). It has a pretty good wikipedia entry: http://en.wikipedia.org/wiki/Sluggish_cognitive_tempo
SCT is fundamentally unlike what most people (and probably even most doctors) think of as ADHD, because it is the opposite of hyperactive. Personally, I have come across people with typical kinds of ADHD, and I do not relate to them at all. This is why it was so hard for me, and evidently my doctors, to properly diagnose. But I have read several academic papers on SCT over the past few days, and I fit the description perfectly. Needless to say, I have never found such an exact description of my symptoms in MH literature before.
I think that the psychiatric community has done a disservice to people with the SCT type of ADHD by systematically marginalizing and ignoring the SCT symptoms, even though there have been descriptions in the literature at least as far back as 1990. The wikipedia entry goes into some of the reasons it was excluded from the DSM-IV. It differs so much from the hyperactive kind of ADHD that there is a really strong case for it being a separate disorder. It's speculated that a bit less than half of ADHD Predominantly Inattentive Type is made up of people with prominent SCT symptoms, and the rest is made up of people with activity levels that are normal or above normal, and whose symptoms resemble ADHD Combined Type, but have hyperactivity that either resolved in childhood or doesn't meet all the criteria for inclusion in ADHD-CT. Hypoactive ADHD would probably be better excluded from ADHD and assigned to a new disorder. Having hyperactivity in the name of the disorder is counter-intuitive to say the least, and probably results in underdiagnosis. It's as if major depression was considered a subtype of bipolar, "Bipolar Disorder Predominantly Depressive." Or if all anxiety disorders were considered subtypes of a single disorder, GAPPD ("Generalized Anxiety Panic Phobia Disorder"). Why should there be only one kind of attention disorder?
Posted by Phillipa on July 3, 2011, at 0:27:28
In reply to Finally, an explanation?, posted by mtdewcmu on July 2, 2011, at 22:27:48
What is the treatment? May have been in the wiki but skimmed it. Phillipa
Posted by mtdewcmu on July 3, 2011, at 0:41:49
In reply to Re: Finally, an explanation? » mtdewcmu, posted by Phillipa on July 3, 2011, at 0:27:28
> What is the treatment? May have been in the wiki but skimmed it. Phillipa
Stimulants help to some extent. I think there are also CBT approaches that would differ from regular ADHD.
Posted by mtdewcmu on July 3, 2011, at 22:57:05
In reply to Finally, an explanation?, posted by mtdewcmu on July 2, 2011, at 22:27:48
I could be mistaken, but I get the sense that there is some pushback from members of the ADHD community against the idea of separating off SCT-type individuals and giving them their own disorder. At first, I was puzzled as to why they would not want to give this group the recognition of having its own disorder, if the science supported it. Then I imagined how someone with traditional ADHD might see it. If you already fit in comfortably with the larger ADHD community, then as far as you are concerned, the more patients that get diagnosed with ADHD the merrier. Having more people with the disorder makes your community larger and thus more important, and so you have more clout to advocate for your causes, and it also makes you feel less lonely in your struggles with the disorder. This idea is totally wrongheaded, though, and potentially harmful to people with SCT. There is no advantage to SCT folks to getting lost in the larger ADHD community, having their unique symptoms be ignored in public outreach because they don't fit the majority, and being excluded from research because it is an atypical presentation and not representative of the group. I don't think that I could feel supported in an ADHD message board or support group, when the primary message being put out is, don't feel too bad about being impulsive and scatterbrained, your disorder gives you exceptional creativity and is shared by wildly successful people who credit ADHD with their success (to get the general flavor, check out http://adultaddstrengths.com/2005/05/11/the-gifts-of-adhd/). My disorder has no upside. It's hard to see what benefit that could accrue from having a sluggish cognitive tempo. More free time if you're unable to keep a job? I feel much more at home on a board for depressives, because no one tries to claim that feeling horrible for no reason has any benefits. At least no one that actually has depression. It's understood that it's a miserable illness, no one wants it, and the only cause for joy in the depression community is when somebody manages to escape. I have no interest in hearing about the good things about ADHD, when it is about someone else's ADHD. I'm not cheered by the prospect of going to a support group and getting to make lots of new friends who are learning to love their disorder, whom I can't relate to in the least. The sort of thing that would make me feel supported in this disorder would be to connect with other people who can understand the torment and can perhaps share some words of strength and hope through adversity. I am not interested in being the bummer at the ADHD party. I will stick with the people that hate their disease.
Posted by Phillipa on July 4, 2011, at 19:12:47
In reply to The ADHD community, posted by mtdewcmu on July 3, 2011, at 22:57:05
I've read that only people who were add or adhd as a child can have this disorder as adults and usually gone in late teens. So how does one become add or adhd as an adult? Phillipa
Posted by mtdewcmu on July 4, 2011, at 20:28:00
In reply to Re: The ADHD community » mtdewcmu, posted by Phillipa on July 4, 2011, at 19:12:47
> I've read that only people who were add or adhd as a child can have this disorder as adults and usually gone in late teens. So how does one become add or adhd as an adult? Phillipa
You don't become add/adhd as an adult. Did I say somewhere that I developed it as an adult? I've been this way my whole life.
There are at least two different kinds of ADD. I'm not much of an expert on the hyperactive kind, but I've read that the hyperactivity tends to get better as you grow up, but the inattentiveness less so.
The Sluggish Cognitive Tempo kind, that I have, doesn't get any better IME. Not much is officially known about it, but I have come across people saying that it actually gets worse. My hunch is that they don't mean that it is terminal like Alzheimer's Disease or Huntington's Disease, it's just that as you lose your youthful energy and curiosity, you lose some ability to fight the inattentiveness. So it probably gets a bit worse as you grow up, but then it plateaus and stays pretty much the same until late adulthood.
Posted by Phillipa on July 4, 2011, at 21:24:24
In reply to Re: The ADHD community » Phillipa, posted by mtdewcmu on July 4, 2011, at 20:28:00
I still get nursing newsletter and todays had an article on just this subject I asked about. Said in bad depression that add meds are given to boost antidepressants so it gets confusing.Phillipa
Posted by hopefullynow on July 11, 2011, at 23:14:37
In reply to Re: The ADHD community » Phillipa, posted by mtdewcmu on July 4, 2011, at 20:28:00
Interesting subtype of ADD
It sound very much like anhedonia that many fellows on this board complain.Trying to complete a task and being bored and unmotivated, then jumping to another thing was with me all my life.Also the lack of hyperactivity and impulsiveness is very interesting
You shed a light on me.
Are you on a treatment right now?
Did something along your course of the illness helped with these symptoms?
For me, ephedra and beta agonists helped a lot but I developed rapid tolerance and I crashed with grace all the time.
All the best!
Posted by mtdewcmu on July 12, 2011, at 0:21:29
In reply to Re: The ADHD community » mtdewcmu, posted by hopefullynow on July 11, 2011, at 23:14:37
> Interesting subtype of ADD
>
> It sound very much like anhedonia that many fellows on this board complain.Trying to complete a task and being bored and unmotivated, then jumping to another thing was with me all my life.Also the lack of hyperactivity and impulsiveness is very interestingI definitely have anhedonia. At first I thought you wrote dysthymia. It would be sort of like dysthymia, since both are chronic, and there could be some overlap. For me, there is significant psychomotor slowing. In psychometric testing, my performance IQ has consistently been much lower than my verbal IQ. The fact that it was 20 pts lower when I was tested in junior high, and 30 points lower when I was tested 5 years ago, says to me that this has to be more than depression. It would be unusual to stay that depressed so consistently for such a long time.
>
> You shed a light on me.
>
> Are you on a treatment right now?Yes. Dexedrine. I'm prescribed 30mg, but more seems to work even better.
>
> Did something along your course of the illness helped with these symptoms?Wellbutrin has helped for relatively short intervals. I started Dexedrine a couple months ago, and it helps the most so far.
>
> For me, ephedra and beta agonists helped a lot but I developed rapid tolerance and I crashed with grace all the time.
>
> All the best!
Posted by mtdewcmu on July 12, 2011, at 22:09:23
In reply to Finally, an explanation?, posted by mtdewcmu on July 2, 2011, at 22:27:48
I found SCT in the DSM-IV-TR! They tucked it away in a disorder called AD/HD Not Otherwise Specified:
Posted by Phillipa on July 12, 2011, at 23:48:59
In reply to I found it!!!, posted by mtdewcmu on July 12, 2011, at 22:09:23
Well new to me for sure. But you found it. Good work!! Phillipa
Posted by hopefullynow on July 13, 2011, at 3:23:25
In reply to Re: The ADHD community » hopefullynow, posted by mtdewcmu on July 12, 2011, at 0:21:29
I also suffer from dysthimia and anhedonia and they surely overlap on me, too.
I never was suicidal, only my mood is down, I don't get joy on normal things or on my past hobbies, I only do things that I HAVE TO (and veeery hard).
I'm glad that you're finally on something that works.Do you suffer from crashes on Dex at the end of the day or on the afternoon?
Unfortunately stimulants are not available in my country and AD's with norepinephrine reuptake inhibition only gave me anxiety and panic, so they are not an option.
Good luck to you !!!
> > Interesting subtype of ADD
> >
> > It sound very much like anhedonia that many fellows on this board complain.Trying to complete a task and being bored and unmotivated, then jumping to another thing was with me all my life.Also the lack of hyperactivity and impulsiveness is very interesting
>
> I definitely have anhedonia. At first I thought you wrote dysthymia. It would be sort of like dysthymia, since both are chronic, and there could be some overlap. For me, there is significant psychomotor slowing. In psychometric testing, my performance IQ has consistently been much lower than my verbal IQ. The fact that it was 20 pts lower when I was tested in junior high, and 30 points lower when I was tested 5 years ago, says to me that this has to be more than depression. It would be unusual to stay that depressed so consistently for such a long time.
>
> >
> > You shed a light on me.
> >
> > Are you on a treatment right now?
>
> Yes. Dexedrine. I'm prescribed 30mg, but more seems to work even better.
>
> >
> > Did something along your course of the illness helped with these symptoms?
>
> Wellbutrin has helped for relatively short intervals. I started Dexedrine a couple months ago, and it helps the most so far.
>
> >
> > For me, ephedra and beta agonists helped a lot but I developed rapid tolerance and I crashed with grace all the time.
> >
> > All the best!
>
>
Posted by mtdewcmu on July 13, 2011, at 11:41:01
In reply to Re: The ADHD community » mtdewcmu, posted by hopefullynow on July 13, 2011, at 3:23:25
> I also suffer from dysthimia and anhedonia and they surely overlap on me, too.
>I'm sure that's the case. Actually, I meant something slightly different. I meant that dysthymia may overlap with SCT-type ADD. It's hard to get pleasure from activities when you have an extremely low threshold for boredom and you have to exert a lot of effort to maintain focus. So some "dysthymia" may be associated with an undiagnosed sluggish cognitive tempo.
> I never was suicidal, only my mood is down, I don't get joy on normal things or on my past hobbies, I only do things that I HAVE TO (and veeery hard).
>If there was a time before this illness when you could get normal pleasure from activities, then that better fits the description of a mood disorder, as opposed to a type of ADHD.
> I'm glad that you're finally on something that works.Do you suffer from crashes on Dex at the end of the day or on the afternoon?
No, virtually none. Adderall, however, was horrible. I've read research that d-amphetamine is less crashy than l-amphetamine.
>
> Unfortunately stimulants are not available in my country and AD's with norepinephrine reuptake inhibition only gave me anxiety and panic, so they are not an option.
>
> Good luck to you !!!
>That's terrible. I don't know what people are expected to do if the medication they need is not available in their country. I feel certain that I would be unable to work without powerful medication.
Posted by mtdewcmu on July 13, 2011, at 11:51:53
In reply to Re: I found it!!! » mtdewcmu, posted by Phillipa on July 12, 2011, at 23:48:59
> Well new to me for sure. But you found it. Good work!! Phillipa
Thanks. It makes me feel better that the cause of my disability is recognized in the official book of psychiatry. It's a lot easier to convince people that your condition is real when you can point to it in the book that every psychiatrist uses.
I don't want to have to say, "I have ADHD, but it's not like the normal ADHD. It's some obscure form I found on the internet and I got my doctor to buy into." That sounds fishy.
Posted by desolationrower on July 15, 2011, at 22:02:17
In reply to I found it!!!, posted by mtdewcmu on July 12, 2011, at 22:09:23
i wouldn't worryr too much if the psychiatric community hasn't perfectly described your particular instantiation of the human experience.
and yeah this has a lot to do with lack of useful ways for people to engage themselves well in current society
and anyone on dexedrine should be double sure to get enough zinc and magnesium
-d/r
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