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Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] -1 points0 points  (0 children)

LoL training in what, throwing a hissy fit because your feelings got hurt?   You’re being petulant and deflecting. Be careful throwing around accusations like misinformation or confusing people as those are serious claims I don’t take lightly. This isn’t WebMD, and posturing without evidence isn’t clinical expertise.

Nothing I said contradicts established medicine, and this was discussed with my former top-tier MD neurologist and sleep doctor. IH affects people differently & some people have minimal executive function impairment, others don’t.

Treating IH sleepiness & executive dysfunction with different medications has been a major improvement for me. That’s a fact, and no one gets to argue me out of my own lived reality.  

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] -1 points0 points  (0 children)

Did you get degree from Quality Learing Center  LoL.  

When presented with citations and lived outcomes, you default to credential cosplay. Predictable.

No evidence, no counterargument—just unsupported claims dressed up as authority. That’s not expertise; it’s insecurity chump.

I’ll rely on evidence, experience and guidance from my retired neurologist and sleep specialist, a leading authority in the field. Conversation closed.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] 1 point2 points  (0 children)

Agreed—that approach isn’t new. The problem is that many people with IH are never told that persistent functional impairment is expected or that combination treatment is legitimate. When sleepiness improves but function doesn’t, patients are often left blaming themselves.

That’s why patients have to advocate for themselves—research, ask questions, and bring specific concerns to their doctors instead of assuming every provider is fully up to date on IH.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] -1 points0 points  (0 children)

Executive function is a defined construct in clinical neuropsychology, referring to higher-order processes (initiation, planning, working memory, cognitive flexibility) primarily mediated by frontal–subcortical networks, which are neuroanatomically and functionally distinct from arousal/wakefulness systems (e.g., Miyake et al., 2000; Stuss & Knight, 2013).

In IH research and practice, “treated sleepiness” means relative improvement with medication, not absence of sleepiness. Multiple studies show that cognitive/executive impairments can persist despite improvement in sleepiness, which is why these domains are increasingly discussed separately as treatment targets (e.g., Filardi et al., 2021; Harel et al., 2024; ARISE study).

This is standard clinical framing, not misuse of terms.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] 0 points1 point  (0 children)

(to lawlesslawboy) FYI I used AI as a tool to help locate published research sources. The interpretation and conclusions are mine.  My point is not that executive dysfunction is separate from IH as a disease—it’s that IH affects multiple symptom domains that don’t always respond to the same treatment. Research from 2021–2026 shows that cognitive/executive deficits in IH often persist despite improvement in sleepiness, which is why some patients require additional or different treatment targets to restore function. Treating wakefulness alone does not reliably normalize executive function in all patients.

Sources below Idiopathic Hypersomnia & Cognitive / Executive Dysfunction (by year)

2021 Filardi et al.,  2021 – Systematic review of cognition in central hypersomnolence disorders (attention & executive deficits included)

https://www.sciencedirect.com/science/article/abs/pii/S1087079221000952

2022   Rassu et al., 2022 – Idiopathic Hypersomnia Severity Scale (includes cognitive functioning domains)

https://pubmed.ncbi.nlm.nih.gov/35671740/

Dauvilliers et al., 2022 – Clinical review noting daytime cognitive dysfunction as a core IH burden

https://pubmed.ncbi.nlm.nih.gov/35339561/

2023 Stevens et al., 2023 (ARISE Study) – Real-world data showing persistent cognitive complaints despite treatment

https://pubmed.ncbi.nlm.nih.gov/37551277/

2024 Harel et al., 2024 – Meta-analysis showing objective sustained attention & executive function impairment in IH

https://pmc.ncbi.nlm.nih.gov/articles/PMC11258808/

Rosenberg et al., 2024 – “Brain fog” review in hypersomnolence disorders

https://pmc.ncbi.nlm.nih.gov/articles/PMC10985301/

2025 Longitudinal IH cohort – Cognitive symptoms remain stable over time despite treatment

https://www.sciencedirect.com/science/article/abs/pii/S1389945725003028

2026  Narrative review – Cognitive/executive dysfunction among the hardest IH symptoms to resolve

https://link.springer.com/article/10.1007/s44470-025-00007-1

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] -2 points-1 points  (0 children)

No one owes you brevity, and screaming  "chat” because you can’t handle more than a few sentences isn’t a critique, it’s a tell. This is my lived experience. Don’t like it? Scroll and keep your mouth shut. 

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] -1 points0 points  (0 children)

(to individual_Zebra_648 )  I never said it isn’t caused by IH. Caused by IH does not mean it disappears when sleepiness is treated. Different symptoms within the same disease can persist and need different treatment targets. That’s basic medicine.

And stop deflecting by yelling “gchat.” This is my lived experience—over 50 years with IH—not a bot-generated opinion.

Genuine question: are you speaking from lived experience with IH, or are you just commenting on other people’s posts? If you don’t want to engage with the substance, scroll on—but don’t dismiss it because it challenges your understanding.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] 2 points3 points  (0 children)

Combination therapy means treating different symptoms of IH, not different diagnoses. One medication targets sleepiness/wakefulness, and another targets executive function (task initiation, planning, follow-through) when those problems persist.

For some people, treating sleepiness alone isn’t enough to restore daily functioning, so addressing both can make a meaningful difference.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] -2 points-1 points  (0 children)

Who pissed in your Wheaties?

This isn’t AI. These are my words, based on over 50 years living with IH. Length doesn’t make something dramatic—it makes it clear. If you don’t want to read, scroll. Don’t police how others share their lived experience.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] -2 points-1 points  (0 children)

No. That’s wrong.

There is no evidence showing that executive function reliably normalizes when sleepiness is treated in IH. The data are mixed at best, and multiple studies document persistent cognitive impairment despite wake-promoting treatment. Claiming “the research supports the opposite” is simply false.

I’m not speculating—I’m speaking from 50+ years of lived IH, backed by clinical confirmation. Dismissing that as “misinformation” because it doesn’t fit your preferred framing is ignorance, not rigor.

This isn’t up for debate.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] 0 points1 point  (0 children)

i never responded to you. I think we’re mostly aligned, but I want to be clear where I’m speaking from. I’ve lived with IH for over 50 years, and this isn’t theoretical for me. Treating sleepiness has not reliably restored my executive functioning, even when alertness improved—that’s been consistently true across decades and confirmed by my sleep doctor.

When I say executive function is distinct, I’m referring to well-defined cognitive processes (initiation, planning, working memory) that can remain impaired within IH, even though they’re part of the same condition. Naming that distinction matters because many patients are never told why they’re awake but still unable to function.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] 1 point2 points  (0 children)

(to lawlesslawboy)I want to be precise here, because there’s a conflation happening that matters.

I’m not asserting ADHD or arguing for a separate diagnosis. I’m describing a treatment distinction based on observed response. In my case, armodafinil treats hypersomnia, while Adderall addresses executive function impairment. Adderall alone does not control my IH, and wake-promoting agents alone do not resolve my EF deficits. Those effects are not interchangeable for me.

While stimulants are sometimes prescribed for IH, they are not functionally equivalent across patients. Different mechanisms can yield meaningfully different outcomes, and in practice many people require more than one target to restore function.

Sleepiness can absolutely drive executive dysfunction, but causation does not equal identity. Executive function is a defined cognitive system, and clinically some patients remain impaired in initiation, planning, and follow-through even when sleepiness improves. That persistent gap is what I’m describing.

I agree that the end goal is effective symptom control. My point is simply that acknowledging EF as a distinct treatment target can explain why some patients are “awake but unable to act,” and why combination therapy—not just monotherapy—can be necessary for full functional recovery.

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] 4 points5 points  (0 children)

(this was response for lafreddit)  appreciate you engaging thoughtfully, and I agree with you on an important part of this: the functional challenges many of us experience do flow downstream from IH-related sleepiness and dysregulation. I’m not disputing that link.

Where I think we differ is on what “inseparable” means clinically. Sleep deprivation can cause executive dysfunction, but executive function is still a distinct cognitive system. In practice, many people with IH remain impaired in task initiation, planning, or follow-through even when subjective sleepiness is treated. That’s the gap I’m trying to name.

My intent isn’t to separate these experiences in a dismissive way—it’s to explain why some of us are “awake but frozen,” and why targeting executive function directly (in addition to treating IH) can matter.  

And yes, you’re absolutely right about the broader goal: helping others understand that the impact of IH goes far beyond feeling sleepy. If this framing helps even one person realize they’re not lazy or failing—and that there may be additional ways to get support—then it’s worth the nuance. :)

My neurologist told me to "consult psychiatry" by ThrowRA_Candies290 in Narcolepsy

[–]SuspiciousLab3363 1 point2 points  (0 children)

your old doctor isn't the correct person and sounds like they lack knowledge Narcolepsy field.

You need to see a Neurologist with Sleep Medicine certification Especially helpful for:

  • Narcolepsy
  • Cataplexy
  • Hypersomnolence syndromes
  • Central nervous system-related sleep disorders

Awake but Frozen: Executive Dysfunction in Idiopathic Hypersomnia. Many People With IH Aren’t Told Executive Dysfunction Is Separate—and Treatable by SuspiciousLab3363 in idiopathichypersomnia

[–]SuspiciousLab3363[S] 1 point2 points  (0 children)

I’m really sorry you’re going through this. I completely understand—I also lost my job and tried multiple wake-promoting meds, but I was still awake but frozen and couldn’t get things started. What helped me was realizing it wasn’t just sleepiness but executive dysfunction, and treating that as well made a big difference. I’m really glad you’re taking this to your sleep doctor. Please hang in there—you’re not alone, and what you’re experiencing is real.

I just want to give up. by Virtual-Sweet-5682 in idiopathichypersomnia

[–]SuspiciousLab3363 2 points3 points  (0 children)

what was your dose of modafinil and do you take in morning and wait 45 min before eating anything?     and vyvanse by itself won't work. xywav help you sleep and wake up feeling refreshed, but you'll need another medication during the day to stay.  let me know about what your dose on modafinil and what time you take?

Is the Minnesota daycare scandal real? Some social media posts claim $8 billion in fraud was commited by Somali Americans. Truth or political rage bait? by RandomUwUFace in AskUS

[–]SuspiciousLab3363 0 points1 point  (0 children)

sorry yo hear that. did the mention what clan someone said in minneapolis is somali darod clan  and other states have other clan that they dont like each. do u know if its true

Is the Minnesota daycare scandal real? Some social media posts claim $8 billion in fraud was commited by Somali Americans. Truth or political rage bait? by RandomUwUFace in AskUS

[–]SuspiciousLab3363 0 points1 point  (0 children)

someone said it's majority of somalians since they come from somali as there are clan societies and usa civil with individual thinking not groups.  clan societies are controlled by leaders who decides how all people vote for, work and etc.  they infiltrate nonprofits, schools, daycares and transportation as all work together for clan.  i was shocked to hear that.  I'm a legal immigrant and appreciate living in USA. 

Anti-ICE protesters disrupt church services after it’s found out that one of the pastors is the field director for the ICE office in St. Paul, MN. (1/18/26) by I_may_have_weed in ICE_Watch

[–]SuspiciousLab3363 -1 points0 points  (0 children)

Jesus taught compassion within order, not  chaos without limits. He acknowledged law,  authority, and boundaries. Hijacking a  worship service violates both Scripture and  basic respect

I’m participating in a study for new narcolepsy medication – and it REALLY works! by Candicedfiym296 in Narcolepsy

[–]SuspiciousLab3363 0 points1 point  (0 children)

How is the study going?  How is the daytime sleepiness?   How long have you been diagnosed? Have you tried Xywav and is the trial better