Hello brother , I just wanna ask how is your memory ? If someone give you 5 words to remember and ask you later would you remember them I have the same condition I am scared I have dementia can you please tell me about your memory ?
I feel for you! At least it has been identified and, if it's without ADHD attached to it, consider yourself extra fortunate. I am curious what kind of treatment options you were told about [if you felt OK about sharing]. See, this is why I think I either need to find or start some sort of online connection for SCT/CDS identifiers!
I relate to these symptoms in addition to ADHD. The thing is, even though I have ADHD symptoms and was diagnosedwith the inattentive type in middle school, I am super risk adverse, so even though I dream of novelty, if it's more scary than, say, trying a different grocery store location than usual, it terrifies me. I have the worst time making life changes, and I considered autism, but not everything fits, I don't have a lot of the sensory and social issues worse than other ADHDers without autism do (although I'm an EXTREME introvert, which is why Covid lockdown was a damn relief for me). I also don't have racing thoughts, just can't ground my thoughts to my environment/tasks I'm not engrossed in, and I don't have time blindness but time management problems, I seem to take twice as long as everyone else, and extra time helps a lot. Some meds (vyvanse, Adderall) improve it but don't resolve it unless I ALSO apply quite a lot of discipline, but at least it's possible albeit hard, not impossible (methylphenidate makes it worse, Strattera does nothing noticeable but upset my stomach). I ALSO am diagnosed with a periodic mood disorder (cyclothymia possibly), anxiety and a circadian rhythm disorder where I'm always tired. This fits everything but the few primarily inattentive ADHD things like interrupting. I hope there's more research, hell, I'll participate in a study.
You can have both ADHD and what's now being called CDS (what I used to think of as ADD colloquially). It was nice to discover they were different and affecting different aspects of say attention for example.
@@_lil_lil We share many similarities. I wasn't sure about the autism diagnosis for similar reasons. But autism can present differently in women and, sorry to say, but those in our mental health system don't seem any more knowledgeable, unless it happens to be a special interest of theirs. One clue for me is that I felt I related better in some autistic communities, even if I didn't share the same traits as someone else.
@@meeerdock OR, maybe CDS is some similar subtype of autism. They are always changing the DSM diagnostic criteria. The person who recognized and coined the term HSP (first by observing her grandsons' behaviors) was later to learn of their autistic diagnosis which, at one time, would have been Asperger's, if that had not gotten absorbed into the autism spectrum diagnosis instead. Also, you used to not be able to diagnose ADHD and Autism at the same time. That changed over a decade ago. I forgot the statistic, but a large number of those on the autistic spectrum also have ADHD. Ignoring one, over the other, is not helpful, in my experience.
I initially diagnosed myself during peri-menopause, when coping skills I had unknowingly been utilizing all along, to over-compensate, suddenly fell apart. I was having a harder time staying organized and tracking things. The scariest, for me, was that it was becoming a frequent occurrence to miss exits or remember where to turn when suddenly confronted with the need to make a decision, because I could no longer reign in my thoughts quick enough to do so, as if that aspect of the drive didn't get programmed into my Default Mode Network, per usual! The harder I tried to think about where I was going or what I was supposed to be doing, the more mind would go blank and I would be forced to make a choice....sometimes the wrong one. My increasing forgetfulness and disorganization lead me to read about "ADD" and what a surprise that was to this mental health nurse with 10 years of community MH experience! I never had kids, nor chose to work with them, so I wasn't interested in the subject of ADHD, which subsequently left my definition of it stuck back in the 60's. As I continued to learn, I remembered having identified strongly with the "inattentive type" diagnosis and, in particular, with the SCT/CDS definition/description. Yet, looking back at my history, I did sometimes exhibit impulsivity with not waiting my turn to be called upon before sometimes blurting out answers. Even now, I can sometimes struggle with interrupting a conversation when someone is long winded or I will still sometimes start to catch myself trying to finish someone else's sentence or word for the them, which I know can be annoying! But, most of the time, I was described as, "shy, quiet, to herself, in her own world, doesn't pay attention, trouble following instructions [tell me about it, it gets costly hiring someone to put items together!]. And no, I "didn't always follow" them because I was likely in "a whole other world" when they came in! Also, a side note for clinicians: Not all of us were or are ignorant at reading cues. On the contrary, sometimes our "response" is purposely implemented to drive someone away that, for some reason, makes us feel overwhelmed with their energy or uncomfortable. I also remember, in kindergarten, preferring to play alone or engage in "parallel play". Unfortunately, I was pushed into the school system one year ahead of most kids [birthdate just met the deadline for school entry]. This was to my disadvantage, as I was already likely developmentally/emotionally immature for my age. That set me up for the next eight years of bullying, with no assistance, while attending a private Catholic school where the nuns/teachers were brutal and the students cliquish and mean. Since my internal world was a lot better than my external one, I often enjoyed being there. The problem was, I had no control over it [and still don't, hence the detriment to my profession!]. I guess, one of the strengths with that is that I was also more likely to catch other nurse's errors in transcription or unusual orders that others would also overlook and I was good at coming up with systems that made it difficult to make an error [which I could still manage to slip past myself, embarrassingly enough]. CDS and [believe it, or not] subsequent language difficulties, like you mentioned, played a large part in my academia, work and social anxiety, avoidance of public speaking, performance anxiety of any kind due to ongoing issues with memory retrieval [if it ever got coded correctly to start with] sensitivities to noise, bright lights, etc. Additionally, having to navigate all of these things throughout my life has significantly added to chronic irritability, exhaustion and emotional dysregulation [trying to cope with the overwhelm of constant noise, interruptions, demands!]. What a profession I chose for myself! If I had only known. I slowly boxed myself into less desirable and/or lower paying positions, with less responsibility/risk [good luck with finding/keeping that in nursing, haha]. What is especially frustrating to me is how I was simply dismissed regarding any personal experience with CDS symptoms/traits once the clinician was satisfied [during the 3 hour evaluation of me, unmedicated], to see I had enough symptoms to appropriately satisfy a C-ADHD diagnosis. On the one hand, I get it. We have "presentations" now rather than "types". Secondly, these changes won't necessarily effect a change in my current treatment. However, it marginalizes the added struggles I have had [and continue to have] that I still attributable to CDS. I remember, during that time when SCT was still recognized in the DSM, I found an online group I connected with, with others who, like myself, more strongly identified with the SCT/CDS aspects [even when compared to the "Inattentive ADHD" specification]. Half of the time, the articles in ADDitude do not apply for me [I already do a good job of maintaining habits to help myself track, for example]. With my C-ADHD diagnosis, any clinician looking at my history would likely make all sorts of instant assumptions about why my marriage ended in divorce when I was the one who was responsible in the marriage for all of our finances and outgoing bills and I did a good job of it! I have a clean driving history, no tickets or accidents. Aside from nearly losing my job in high school due to mistakes I made in the mailing department because my brain was on DMN as my thoughts wandered freely, causing me to miss some of the mismatched envelopes mixed in with what I sent out, I have never been fired from a job. I wish I could find one of these online groups now, because I really did find it to be supportive [hence, if you or anyone knows of such a group, please forward it to me to save me the extra work of trying to figure out how to start one!].
I just found an online community, for $500/year, led by someone who has autism and ADHD and GETS IT (Neurodivergant Insights, by Dr. Megan Anna Neff).... just what I have needed!
I am 40 years old, and I have these symptoms from my childhood but I wasn't aware of this condition, and I used to describe myself as introvert, shy, lazy, highly disorganized person, imaginative and socially awkward person, and because of these things I have difficult life
I certainly have CDS. I don’t meet criteria for ADHD… not even close! Yet I have attention issues. I have all the symptoms of CDS. I also have autism. Another odd thing is that I am sleepy and fatigued all the time despite getting excellent sleep and being an above average athlete. I have a reputation with my track and cross country teams for never knowing what we are doing for a workout. My teammates always have to tell me what’s going on.
For what it's worth on the sleep bit, I'm convinced I have CDS, although I only have an old diagnosis of ADD to base that on. I have also had sleep problems for a long time. For awhile, I did have a job working graves Friday, Saturday, and Sunday. Basically, I would spend Monday making up my sleep and would swap to days for Wednesday and Thursday. Suddenly, on this sleep schedule a lot of my lifelong sleep problems seemed to disappear. I am now 7 on/7 off graves because I needed the extra hours to survive life, so I only got to run that experiment for 9 months. So far, my new schedule is not quite as good, but it still feels better than anything else I have ever tried. I don't know if I am alone in this, but I can say based on the many, many sleep experiments I have tried over the years combined with the 2 sleep studies and 3 sleep doctors one thing I can definitely say is that the WORST thing I can possibly do for my sleep schedule is follow traditional advice that everyone gives you of making sure you get to bed and wake up at the same time every day. I tried that for a year (making sure I had commitments every day, so I HAD to follow through), and it nearly killed me. I'm convinced I don't have a typical 24-hour biological clock. Also, when I need to go to work, it is definitely best for me to go at night. Why? Because when I wake up in the morning I try to adjust to the light, and then when I finally adjust it gets brighter and I have to adjust again, etc., etc. When I work in the evening, I adjust to the light, and then it gets a little less bright, which wakes me up even more and helps me feel on top of things and also doesn't trigger a migraine. So graves are definitely better for me. But also significantly mixing up my sleep schedule during the week means that whatever damage I'm doing to myself to consistently get to work at the same time every day at least gets undone and doesn't keep building on itself. If I ever have to go back to working days, I will for sure make sure I sleep in quite late on Saturday and stay up quite late and do the same on Sunday before switching back. It's not quite enough days to recover, but at least it's something. It should be pointed out that having a different sleep schedule isn't necessarily unhealthy. As a podcast I listened to once pointed out, there are very good reasons our species would select some people to be genetically pre-deposed to have different sleep schedules. As a species, we actually NEED some people to be awake during the night keeping an eye out for threats and helping care for the wounded. I'm not entirely sure what the solution is for people who are wired this way, but forcing someone to live on a "normal" sleep schedule through drugs while experiencing migraines and sub-optimal sleep simply because that is the schedule everyone else is doing doesn't necessarily seem like the healthiest solution to me. However, options for gainful employment may also be extremely limited for people like me who happen to be wired this way. Sure, the jobs I work pay shift differential for working graves, but I originally went to school to be an accountant, and I have yet to find an accounting job that will let me work graves. If I can't find a way to make the limited selection of night jobs work for me, I am in trouble. So basically I have to take what I can get even if it isn't my passion and even if it is a job that requires extreme attention to boring detail, which already is the kind of job I struggle to do with my CDS. Whether it's taking food orders or giving a person medication based on their chart in the hospital, most night work does require accuracy and paying attention to very repetitive details, and most people who design those systems don't trust the grunt laborers who work on graves, so they rarely are given the flexibility to redesign their jobs enough to help them do a better job in paying attention even if they have the skillset and knowledge to do so. As a side note, I also am convinced that at least for me dopamine is at play for my CDS. I once sat down and wrote down 14 different unusual health things I experience, such as if I drink alcohol I don't enjoy the night of being buzzed/drunk/etc., but I wake up the next day way more alert and happy and energetic than I do on a typical morning. I also experience the same thing when I wake up from surgery. Anyway, like I said, I put all 14 down and researched possible explanations. Although each thing had multiple possible explanations, every single one of the 14 things said either low dopamine or regular unusual fluctuations in dopamine could be causing it. Dopamine was the ONLY factor that showed up for even 2 different things on the list, so the fact that it showed up for all 14 is very telling. Occam's razor would suggest that either low or fluctuating or both dopamine levels are occurring in my brain. I would have to find several people who have CDS and see if they have similar experiences to know if my dopamine levels explain my CDS or if they both happen to be independent, but from the extremely limited experiments I have done in that field so far it does seem to be a thing.
It would be interesting to see research into the degree to which children with CDS are subjected to parental abuse and/or neglect, and if the parents themselves have CDS or ADHD. Also to see if these children are more likely to develop OCD by their early teens.
I definitely saw CDS in my dad. Of course, CDS was never diagnosable. What finally got acknowledged are all my autistic traits; enough to qualify me to be diagnosed ASD 1 (as well as ADHD). Though I still wonder, as CDS still makes more sense. The ASD diagnosis at least acknowledges my issues (that ADHD never did)!
Genetic (father) and also parental abuse. I think CDS comes with being socially naive. So someone with CDS would more likely pair with an abusive partner.
The label still sucks. We already suffer from the stigma of appearing to be slow and incompetent. People think we are making a conscious choice to work slowly. Also the constant references to children leaves us adults feeling abandoned.
The treatment that needs to be explored asap is yoga and occupational therapy. This is the only diagnosis I've ever found that actually fits me. I've had providers be insulting and therapists say I'm asking for reparenting, for what amounts to a learning disability. I sorta randomly fell into yoga in my early 20s and it totally changed my ability to focus. One thing about the DSM, do other types of doctors have to go by a single book of diagnoses? If someone's leg is strained do we have to have a double blind placebo controlled study to prove that physical therapy should probably help? We know more than enough about neuroscience to knit what to do to help. We know yoga and meditation increase the ability to focus and reduce default mode network activity. I've had a lifetime of being treated like a slacker including by medical professionals. And I've also had periods where I got to do lots of focus practice like yoga or exercise in general and things like playing an instrument and performed at a very high level. If I had gotta more direct help and/or gotten to do those things for longer without bad jobs and abusive people fighting against me doing what I need to do I think it would have become much more durable and permanent as well. I don't think we need any more research to start implementing common sense treatments. Not that more research is bad but it doesn't take a rocket scientist to know what to do.
So, an update. Thanks to RU-vid algorithms, I started learning about overlap between CDS and autism, as well as overlap between being "Highly Sensitive" or having "Sensory Processing Sensitivities" and having autism. I was shocked to discover I have high autistic traits, but with so much overlap, it would take someone professional to help differentiate/diagnose. So, I don't know about the whole CDS thing now because, long story short, I am confirmed to be on the spectrum, more with "atypical" traits. I would fit the description [not diagnosis, of course] of someone who "is AuDHD". It certainly clears up a lot of questions in my life!
I doubt it helps, but I have CDS, ADHD and more "high functioning" autism traits. I'm not terribly plussed about it nowadays but the overlap between the first two was newer info to me (that they are indeed distinct and 'impair' in different ways)
@@ChaoticNeutralMatt It definitely helps to know I am not the only one out there [and, apparently, far from it]. I think, what is most frustrating, is the continued lack of knowledge which I also attribute to much of the continued stigma and gaslighting. But, again....the good news now is that I know I am far from alone [and I am not crazy, lazy, etc. after all, but I actually do sort of know what I am talking about, darn it!].
Well hello friend😊 YOUR COMMENT KEPT MY ATTENTION! 😂 I found this diagnosis yesterday. I wasn't sure, because my attention kept drifting. Ha ha ha! But your amazing comment kept me going. I too was a nurse for a short while, along with many other attempted careers (jobs). I'm now in my 60s and undiagnosed. I have however noticed that if i eat wheat (gluten) or highly processed foods my brain fog returns. I'm in the process of testing this hypothesis at the moment. It's all so confusing. Is it real, or just another red herring? Thank you for sharing your experiences. Good luck with finding a group and take care of yourself.
If you get brain fog in response to gluten you might want to get yourself tested for celiac disease. I have celiac disease and my brain fog gets worse if I accidentally eat gluten.
I have CDS and ADHD-IN and I am autistic, though I went completely unnoticed until I sought evaluation myself at the age of 20. My CDS symptoms are most severe during periods of autistic burnout (as a result of prolonged stress e.g. being forced to mask and thrown into a strictly neurotypical environment for years on end with no control over the situation). I would hazard a guess that autism is under-recognised - particularly in adults - and that the overlap is actually a lot stronger than studies currently suggest. Perhaps CDS is adjacent to or for many people a form of autistic burnout. During these periods, the CDS symptoms become so severe that stimulants (which do improve my ADHD-IN symptoms) start to lose their efficacy, by which I mean not only do they fail to help me, but I physically feel them less than I would otherwise. Their character changes. The only thing that really seems to help is something that gets the adrenaline flowing, but in a good way. I am not risk-taking or an adrenaline junkie by any means (like many CDS people, I'm actually quite averse to such things) but I do need to feel excited by something before the CDS fog clears. When in periods of autistic burnout, it's much harder to do this. When I am not burnt out and I am experiencing just the right amount of good stress for the right reasons, CDS is far less prevalent and with stimulants controlling the ADHD-IN symptoms, I am actually functional.
thing is, personally i have always had trouble staying awake normally and i think its something like getting flooded with too much of sleep pressure adenosine even literally feeling it having also autism and it literally just feels like your brain builds up pressure and also it makes you often like super comfortable and drowsy and even lowkey sleepy euphoric kinda lulling you to sleep just like you experience trying to stay awake too long but this happens even sleeping 10 hours or even the whole day if i dont get caffeine coz sleeping repeatedly so much is making your brain feel like you were run over by a truck having such huge headache.
I’ve had these symptoms my entire life. (60 years) I’ve consulted therapists on and off over the last 30 years, but I’ve never found a therapist who admitted to having even heard of SCT/CDS, let alone consider whether it applied to me. I was diagnosed with ADHD (primarily inattentive) as an adult in the 1990s, though I’ve also had difficulty getting some providers to acknowledge that diagnosis since my presentation doesn’t always fit their expectations. As a side note, I do have time blindness, fwtw.
Hello brother , I just wanna ask how is your memory ? If someone give you 5 words to remember and ask you later would you remember them I have the same condition I am scared I have dementia can you please tell me about your memory ?
@@walidsarwary Not great. It was better when I was younger but never great. If I was given 5 words I could probably remember them if nothing else was happening, but if I had to carry on a conversation or go get something in another room, I'm not sure. Just now I went to the kitchen for a snack, put bread in the toaster, and then came back to the computer with a cookbook. I forgot I was writing this and watched a video instead. Eventually, I noticed I had cheese on a plate from before when I had run out of crackers and that's when I remembered I was making toast. That reminded me that I was replying to this message. Does that answer your question?
@higglety230 like based on memory test they give you 5 words and than. Right after it will ask couple other questions like to subtract 7 from 100 all the way and than ask you if you remember that 5 objects , how would you perform on that kind of a test please reply
Yeah, tell me about it!!! It feels like being “thrown under the bus” of a one-type fits all diagnosis. Further, all of ADHD's typically affiliated symptoms/traits/outcomes will be attributed to us, too, wherever we go, whether applicable or not! The thing is, it also ignores treatment factors as researchers start to home in more on what seems to be beneficial [or not] for those of us who have one or the other [or both] disorders. Then again, I am sadly learning, once you're 65 [55 with Vyvanse/lisdexamfetamine], you basically don't count anyway. Medicare refuses to cover meds that "are not scientifically proven to be effective" and you can't "prove" something that will never be studied! Medicare rules don't care what your own personal experience is with medication. They will not allow for exceptions via "prior authorizations" and you will be stuck paying out a chunk or all of your maximum out of pocket insurance costs if you choose to remain on more expensive, but effective meds or meds that don't negate benefits with the side effects they cause you. Since that isn't an option for a lot of us, you are stuck [in my case] choosing the best option out of the lesser effective meds to take, thanks to insurance driven med changes or coverage. Welcome to American healthcare!
If I was a kid would I want to take adhd stimulants for CDS ? No. Perhaps for just math classes later on, Yes. Do I want to be able to take stimulants as an adult ? Yes.
Has this been studied as an autoimmune/autoinflammatory sort of disorder? The child in my life with this disorder responded positively to steroids (given for an ear infection), which took away all his symptoms, however, no doctor was willing to extend the steroid course and his symptoms came back. While inpatient for suicidal ideation (knowing that his symptoms could be resolved but no one would help), he was given Strattera because we were told it "worked similarly to steroids without the same side effects" and again, his symptoms are gone.
You definitely don't want to be taking "long-term steroids" unless you absolutely have to be because you will likely end up worse off, in so many other ways, than the purpose you are taking it for!
Well, as a person with an autoimmune disease myself, I've benefitted from years-long steroid treatments that kept my body from killing me so I understand the side effects well (but also suffered nothing that was worse than my body does on its own). This child is internalizing his illness so much that he's on the verge of death from depression, so his mother and I were willing to risk trying to stabilize him with steroids for a while until we found something else that worked rather than let him unalive himself or live in a mental institution for the rest of his life. @@sharonaumani8827
@@mrchips.9245 It was working effectively at 10 mg, started to wear off, and then he was taken off of it for a different medical reason. His cognition is worse than before and he complains of having almost no internal thoughts if not prompted externally.
The inflammatory mention was interesting though. You don't specifically need steroids to go that route. I am curious on the overlap there as well, we are pretty ignorant on the whole regarding diet, environment, etc that causes stress responses that may not go away because we just don't know it's a thing to worry about or what to do with that information.
From the (little) sources and research you can find on the internet, stimulants (vyvanse, adderall, Ritalin and possibly modafinil) are the meds that have the most chances of helping with symptoms, alongside strattera (atomoxetine) which is an SNRI and a non-stimulant alternative (it’s classified as an antidepressant I think)
Surprisingly no. You can be "afflicted" by both. Although you might be correct in a sense that inattentive might be more aptly described as something else. Still early to say
Great question for 'the experts'! I am sure there is info out there about that. Since I have no kids of my own, or work with them, I have never explored that. Have you checked any of the common ADHD online organizations, like ADDitude?
how does attention regulation help with those with ADHD and CDS? seems like that would be a pointless unless accompanied by ADHD medication - and in that case how does it really differentiate from inattentive daydreaming which is a part of ADHD-i? even though it seems like you're suggesting its not?
I forget the exact details regarding differentiation of the two [surprise surprise], but there are some helpful you-tubes out there on that very subject! By attention regulation, I am guessing you mean things like exercises in mindfulness that help to increase our awareness [?]....see, I already forgot and I am too lazy to go back and listen again. I think any practice that could help increase awareness [even slightly] can be helpful [just not likely helpful enough on its own, without medication, as a lot of health/wellness sites seem to want to lead people to think].
Unless it's super severe, you'd be surprised what those can do. Personally a thing.. a large area of that is working within your capabilities, from there, like steering a ship. Sometimes you end up elsewhere and that's okay. A lot of it's building awareness which allows more intentionality. But it's not a "cure" per se.
I think to do a particular task AD Meds can help. All day use it may not be that useful. Self awareness with intention helps with Adults in case but with kids its harder because that part is less developed and automatic.
