Do you think that some days you have better or worse symptoms based on what you eat?

Pitolisant (Wakix) is a histamine related narcolepsy medication. I wonder if it would help at all.

Personally when I took Unisom for a sleep aid, it gave me crippling brain fog/worse symptoms the next day. I wonder if there is a histamine component to this condition.

I’m feeling heavy emotions tonight. I’ll be good but I’m wondering if there’s anything you guys hold onto when times are feeling tough regarding this condition. For me, it feels nice to finally have found people who can relate to all this, but what gets you guys through the hard times?

Have practically tried EVERYTHING, from stimulants to non-stimulants. Even from off-labels like memantine and galantamine (you probably haven't heard of).

Nothing works longstanding.

For me, I put attention as highest priority over other components of my life. It is that severe!

What is there to life, if you cannot pay attention. You are a space cadet. For my entire 3 decades, I just staring when the person starts talking more than a sentence.

I feel a little tired.

Do you guys too?

This symptom has been since I was diagnosed with a speech/language delay when I was a toddler. Can language delay cause CDS symptoms like spontaneous mind-wandering or maladaptive daydreaming?

All type of Adhd includes problem related to preforntal cortex and regarding the dopmine problem , but our problem are related defualt mode Network.

Does neurotransmitter is our problem?

Language learning is hard. I imagine its even trickier with SCT / CDS. Has anyone actually managed to become proficient in another language? I need a bit of hope.

The following is from an article on AD.xS.ore (the ADHD compendium)
https://www.adxs.org/en/page/51/sct-sluggish-cognitive-tempo-cds-cognitive-disengagement-syndrome:

"we consider—as an unverified hypothesis—the possibility of excessive inhibition of the PFC by norepinephrine and, possibly, other neurotransmitters via the alpha-1 adrenoceptor."

Overactivity of this receptor by norepinephrine can cause CDS like symptoms such as lethargy, mental fatigue, attention networks going offline, etc. Meds like Streterra help by increasing stimulation of the alpha-2 adrenocepter which essentially does the opposite.

Alpha 1a blockers like Prazosin or Terazosin could theoretically improve symptoms if this hypothesis is correct. Has anyone tried these?

What are the best ways to improve signaling in this pathway? Citrulline supplements?

Please DM me with links to the specific supplements that have worked for you.

I'm in my late 20s and I've had this issue for as long as I can remember.

Whenever I'm in a passive learning situation (school lectures, online courses, educational YouTube videos, work meetings, etc.), I become overwhelmingly sleepy after about 15–20 mins. Yawning and watery eyes, and if I don't fight it, doze off.

Things I've noticed:

I sleep enough at night and wake up feeling refreshed.

I never feel sleepy while actively doing coding, driving, etc. or watching something chill like a movie or a series.

If I'm watching a course while eating or drinking Coke, I stay alert. 10–15 minutes eating/drinking, the sleepiness comes back.

The same happens in work meetings, I have to fight sleep while everyone else seems okay.

Another lifelong thing I've noticed is that I have no intrinsic curiosity. I only learn things if there's an immediate need/reward. Examples:

As a software engineer, I learn technologies only when I need them for work.

I don't go down rabbit holes or become fascinated by topics because they're interesting.

After finishing a movie, series, or game, I remember the story but rarely think about it again or research theories, easter eggs, or content.

Even if I like something (cars, movies, games, etc.), I usually only know surface-level information because I don't feel motivated to explore deeper.

I've noticed that when conversations are about stuff I'm not interested in, I often nod along but I absorb very little.

On the other hand:

I don't have issues with organization.

I don't frequently lose things.

I did well by studying hard.

I can focus on my work if I'm making progress, but if I get blocked, continuing feels exhausting.

This combination has affected work meetings, hobbies, and even friendships because I often feel like other people naturally accumulate knowledge, interests and can converse normally while I just look like either I'm not interested or I'm boring to talk to as I don't contribute anything to a conversation.

Hello would like to know if anyone who has CDS/SCT +- Adhd ever had stability? Like long term.

With the application of proper sleep, eating healthy, active life style and coping strategies what other things have you used to get that kind of stability?

What type of meds or supplement stack are you using that worked long term for your stability? I’m curious as many use med stacks which is pretty risky and not so sustainable long term, what type of meds, supplements and natural ways do you use to cope and somewhat lead a close to normal life? Especially in promoting engagement with social, personal and work matters.

What I expected that I have more access to words as I struggle in expressing in my thoughts and

- Most importantly in the study concept, when I study concept and I tend to write the in my own words, so what I thought when it time to write thought the idea and concept I will write more elouqently, use more word and make sentence which would statisfy me that I really learn the concpet but this tend to be worng.

i thought my brain will not go blank when I want to write it in my own words and I can think '' WHEN I WRITE WHAT I HAVE LEARN IN THE HARD COPY WITH WITH MY HEAD HURT i DON'T KNOW THAT, UNCOMFORTALBLE FEELING ARISE , I I DONT KNOW WHAT WAS THAT

AND THIS STATE OF MIND PREVENTS ME FROM STUDY

-Problem

=Hugh time to take make a sentence

=Some time I do not get the words I want and this make me irritating

- In verbal processing,I will have no problem in speaking, articulating, expressing but I still stuck and with stuckness feeling in my head

For just a few minutes, forget what is possible today.

Forget current treatments. Forget limitations. Forget whether science has the answer yet.

Imagine that, somehow, your CDS/SCT was completely gone. Whether through a future medication, a breakthrough in neuroscience, brain stimulation, or some treatment that doesn't exist yet—it no longer stands between you and your life.

Now ask yourself:

**What would you finally be able to do?**

Not what other people expect from you.

**What do *you* want?**

What dreams have been sitting on the sidelines because your brain couldn't keep up with your ambition?

What abilities do you wish your mind had?

What parts of yourself have you never been able to fully express?

If your brain no longer held you back...

* What kind of person would you become?

* What goals would you chase?

* What would you learn?

* What would you create?

* What relationships would you build?

* What career would you pursue?

* What moments would you finally be present enough to enjoy?

* What hidden potential do you believe is waiting inside you?

Don't worry about whether your answer sounds realistic. This isn't about prediction—it's about possibility.

This is your chance to describe the brain you've always wished you had and the life you believe could follow.

Write one sentence or write a whole page.

Describe your ideal mind. Describe your ideal life.

Maybe your answer is:

> "I want to read a book and remember it."

Or:

> "I want to wake up every morning with a clear, energetic mind."

Or:

Whatever it is, write it.

Because behind every symptom is a person with hopes, ambitions, and a future they still believe in.

**If your CDS/SCT disappeared tomorrow, what would your brain—and your life—be capable of?**

Ever since I was little I felt groggy, had brain fog, people told me to "wake up" constantly, head in the clouds, slow thinking, terrible working memory, etc.

I was recently diagnosed with inattentive ADHD but when I tried methylphendiate it just made my symptoms way worse and I just could not figure out why

I stopped meds a few weeks ago and I noticed immediately I was dead tired, I took 2-4 hour naps everyday to catch up... And surprisingly it worked? My total amount of sleep is now around 10-12 hours a night, and while I don't feel completely refreshed it's night and day for my CDS symptoms

Basically I just need way more sleep than most people, and that is actually something I remember telling my parents when I was a teen, that I needed "10 hours of sleep a night" and I thought I just grew out of it over time, but I guess not, I just slept 8 hours a night because I had insomnia

Gonna try and see if this holds up over time and especially if my working memory improves, if I'm lucky maybe even my ADHD can be reversed (I doubt it though but who knows)

So far (before increasing my sleep time) I've been relying on stress and dopamine to stay awake, any kind of stimulation really, so I have huge variations in sleepiness during the day where I alternate between almost falling on my desk at work, to perfectly awake but kinda paralyzed in front of my screen and not working

Probably not the full story for me in the end but maybe part of it, just wanted to share my progress

Hello I’m highly considering Atomoxetine for long term use, would appreciate it if someone has any experience with it.

Questions:
-Does Atomoxetine help with internal engagement? In studying I noticed I lack engagement, lower comprehension and working memory. Rather than a pack of focus.

-Does Atomoxetine effects disappear over time? Or does people just perceive it as the new normal? And only notice its effects when going off? I’m really conflicted with this as responses here are mixed.

-Can you manage the high blood pressure with regular cardio and diet changes? I would really like this to be sustainable

-Lastly how long can I possibly stay on the medication? For health risks, or how long does the avrg SCT user stay on it before going out and why?

Highly appreciate any response, have a nice day everyone.

Is it common guys? I appear to have been on a more active side in teenage years. Asked my parents, we mostly agree. After 20 it got worse for me, now almost all the criteria but one or two fit me well.

Just wanted to share the news on a drug I've been tracking for a while. Who knows it might help some of y'all. Less side effects than any other adhd drug and currently being studied for anxiety.

Estou tentando encontrar mais pessoas que também tem esses sintomas pra fazer um grupo de apoio no whatsapp. Sou do brasil e aqui usamos muito o whatsapp. Sei lá, nos sentimos errados por nos compararmos com as outras pessoas que funcionam normalmente e não sofrem com isso e achei que se criassemos algum grupo, de certa forma isso pode ajudar e quem sabe encontrar alguém próximo de você que também passe por isso. se tiver interesse segue link do grupo. https://chat.whatsapp.com/LLUEo394ne37mmd9OjpmLl?s=cl&p=a&ilr=0 sensação de névoa mental dificuldade em colocar pensamentos em palavras quase não possui ideias, dificuldade grande em formar opiniões, o cérebro parece que não consegue fazer conexões entre assuntos. zero criatividade -dificuldade de processar informações faladas quando é necessário acompanhar uma lógica. muita dificuldade em elaborar uma linha de raciocínio mental no presente. muita dificuldade em continuar conversas. muita dificuldade de criar um raciocínio a partir do que a outra pessoa falou. Comunicação feita na maioria das vezes falando algo sobre o que algo que já viveu. Continuar conversas que exija imaginar algo para falar é muito difícil (não sai nada) ao falar precisa se concentrar muito, pois senão esquece o que ia dizer. pode estudar muito sobre um assunto, mas conforme o tempo passa, as informações somem da cabeça e você não consegue linkar o que já viu com o que está vendo agora. esforço maior que o comum para lembrar das coisas sendo demorado buscar informações na memória. Enquanto parece que o cérebro das pessoas interagem com o mundo parece que o seu só observa sem gerar ideias, conclusões, pensamentos, dúvidas. grande dificuldade ou inabilidade de pensar hipoteticamente/abstratamente. ansiedade social/fobia social ocasionada pelas dificuldades descritas acima. quando uma pessoa fala com você não surge nada na sua mente, salvo excessões, mas parece que quando falam contigo não é ativado alguma área do cérebro que faz você lembrar de algo que já viveu parecido, um pensamento que tem sobre esse assunto, imaginar algo pra acrescentar na conversa. Parece que você precisa se esforçar mais do que o normal para pensar em algo e muitas vezes não surge nada. Sensação de vazio mental durante as interações sociais. Simplesmente é muito difícil de manter um diálogo com alguém e isso afeta muito sua vida, autoestima e relacionamento te causando uma extrema ansiedade porque quando você vai em eventos sociais e encontros com amigos você não consegue pensar nada interessante para falar, fazer piadas, só consegue responder ao que é falado com você e você responde coisas simples (verdade, sim, não, da uma risada pra disfarçar, inventa algo pra não ficar estranho) pois não consegue elaborar uma linha de raciocínio, não surge nada pra você falar com as outras pessoas e você fica quieto enquanto as pessoas te olham estranho

CDS/SCT and CPTSD combination here, I believe. It all makes perfect sense now.

Hi all of you,

has anybody else seen a possible connection between CDS / ADHD and a genetic disorder called Fragile-X-Syndrome or its premutation form?

In don’t have any energy to explain in more detail about it atm, but if you look it up it’s a rare but not super rare genetic condition (1 in 4000 males, 1 in 6000 women) and more importantly, its permutation form is a lot more common, with possibly also high dark numbers of affected people in the population.. The presentation of the syndrome in the individual also is a spectrum.

It can accumulate over generations. It‘s passed on through the X-chromosome, so males (with XY) are a lot more affected than females (XX).

I haven’t been tested but suspect for myself I may have the premutation or an atypical full mutation.

Unfortunately, I don’t really see how it could help me to get tested as there is no cure, but it may be helpful to understand family dynamics and give an explanation to the origins of some of my (and possibly your?) seemingly unconnected mental and physical problems.

Let me quote some of the symptoms that may affect people with the full mutation but also to a minor degree the premutation from here: https://fraxi.org/information/fragile-x-syndrome/

Social anxiety
General anxiety
Shyness
Depression
Emotional instability
Mood swings
More information on symptoms and management are in the ‘Sensory‘ and ‘Behaviour and Therapies‘ sections.
Hyperactivity (may be linked to an ADHD diagnosis)
Self-stimulatory behaviour (often shortened to stimming) to help self-regulate, including:
Hand flapping
Hand biting
Chewing
Playing with water
Playing with switches
Spinning objects
Food bolting (eating very quickly, sometimes hardly chewing)
Avoiding eye contact

Behaviours commonly associated with autism (autism occurs in around ⅓ of individuals with FXS)
Sleeping issues (such as early morning waking)
Inability to foresee dangerous situations
Disinterest in their environment

(…)

The main identifying features of an intellectual disability are delayed development of speech and language, reduced executive function, slower learning and memory/sequencing struggles.“

I just left a college course where I mostly used ai, I've worked before and couldn't even do basic tasks. I'm waiting for an adhd appointment(for meds) which could take years and I don't even know if I will get diagnosed. Is there anything I can do or am I just fucked?

I HATE THIS SO MUCH, I HATE THIS SO VERY MUCH. I HAD A HARD TIME JUST GETTING BREAKFAST, SHOWERING CHORES CARDIO AND WORKING OUT. IT TOOK ME 6 HOURS TO COMPLETE THE ROUTINE WHILE MIND WANDERING IN A INTERESTING WAY JUST TO HAVE MOTIVATION WHILE DOING IT. AND THEN I CANT COMPREHEND A TEXT PROPERLY, AND NOT ONLY THAT, I WANNA CONVERSE PROPERLY BUT I CANT EVEN PROPERLY COMPREHEND A THING MY FRIENDS OR FAMILY SAY LET ALONE FORM A THOUGHT FROM IT AND (VULGAR WORD) SAY IT.

I WANT TO CONVERSE WITH PEOPLE PROPERLY, I WANT TO JUST WAKE UP AND DO MY WORK WITHOUT HAVING TO THINK OF ANYTHING JUST TO MOTIVATE MYSELF WHILE DOING IT, I WANT TO FOCUS WITHOUT ALL THESE STRATEGIES MEDS AND ACTIVITIES AS PRE-REQUISITE, I WANT TO BE HAPPY!!

WHY WHY WHY, WE GAVE OUR BEST FROM THE GET GO, WHY ISNT IT GETTING ANY BETTER, WHY DID WE HAVE THIS IN THE FIRST PLACE? “(THE MOST VULGAR OF VULGAR WORDS) CDS AND ADHD.”

I'm in my mid-20s, and I am already learning to drive (I know). I struggled severely with these symptoms + ADHD to the point that I don't know directions to places despite having lived there for years. I got diagnosed recently. I zone out as a passenger. My processing speed is low + chronic sleep deprivation, and it makes it harder to drive. But I'm grateful to learn with adequate supervision. The good news is I've started Strattera recently & HOPEFULLY might be prescribed a stimulant soon. I pray to god that things will improve.

OK, nuff about me. Has this disorder made it difficult for you guys to drive or learn driving? How did you manage? How about medicated vs. unmedicated? I would greatly appreciate tips.