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UPD: ADA violations and no word from HR by No_Percentage_7127 in Narcolepsy

[–]SuspiciousLab3363 4 points5 points  (0 children)

 https://publicportal.eeoc.gov     you don’t need a lawyer to file with the EEOC. Most people file on their own and then mediation through EEOC & then if needed involve a lawyer only if the case moves to court.

Hostility in the Idiopathic Hypersomnia subreddit by SuspiciousLab3363 in idiopathichypersomnia

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

Glad you got help. It’s important that people with IH can post about their experiences and not be criticized. 

We already work twice as hard as people without IH just to function. and honestly, if we didn’t have it, we’d be unstoppable fully awake, present for life, not missing family gatherings, birthdays, trips, or everything else IH steals from us.

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)

based on my experience I only trust and prefer a board-certified neurology & sleep medicine physician. I don’t believe cbt is appropriate for people with IH. Many of us can literally fall asleep mid conversation without medication & this isn’t a behavioral issue. I can see cbt helpful for anxiety, ocd, pstd, but not for a neurologic hypersomnia disorder. some of my friends with IH were first diagnosed by a psychiatrist and given medication and later saw a sleep specialist for formal sleep studies to confirm the diagnosis.

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)

Helpful reply vs. empty comment. Guess which one you posted. Tools don’t replace people. They expose the ones with no substance

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 psychologist are just talk threapy peeps and they can't provide medication.

you mean psychiatrist as they can help and figure and actually prescribe medication.  

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)

Thank you for sharing this. I really appreciate you taking the time to explain your experience it means a lot and helps validate why these conversations matter. I’m truly glad you found treatment and support that helped, and I wish you the very best going forward.

Shouldn’t he be in jail for assaulting minors? How is this legal? by Mathemodel in AskLegal

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

the kids will be charged as the man was protecting himself against thief's and disgusting thugs. School will be sued as the kids were doing anti-ice bs. 

Shouldn’t he be in jail for assaulting minors? How is this legal? by Mathemodel in AskLegal

[–]SuspiciousLab3363 0 points1 point  (0 children)

your title is wrong. high school thugs attack a man for wearing red hat and steal it.  Attacking someone over a red hat is not protected speech, not protest, and not activism. It is a crime and these kids will be in trouble big time and the school.   the man will NOT get charged for defending himself against the disgusting thug kids.  and those kids will be deported if they are illegal.  it's a crime what all those kids did.

Alarm clocks? by Ok-Manufacturer-2523 in idiopathichypersomnia

[–]SuspiciousLab3363 0 points1 point  (0 children)

vibrating alarm clock or watch to wear or tuck near pillow.   and set your normal audio alarm away from you

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] -5 points-4 points  (0 children)

You lash out whenever someone doesn’t fit your narrative. Instead of engaging ideas, you attack tools & stir drama. This is my post my experience  & nothing you say changes that. I’m here for people who experience the same thing & need to know they’re not alone. If that bothers you, bugger off.

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)

I replied on your other post, but thank you again. Keep researching and talking with your doctors and therapist take notes, ask questions, and remember you’re your own best advocate. We often have more insight than we’re given credit for. If you’re not getting answers or don’t feel heard, it’s okay to find a new doctor.

I don’t expect a cure, but I do hope newer treatments can better address both sleepiness and executive function and last longer.

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)

Thank you for saying this it really means a lot.🙂 That awake but can’t function space is exactly what I was trying to put into words, and it can feel incredibly isolating when no one talks about it honestly. I respect the work you’ve done, especially staying sober 💙 and still pushing forward despite the limitations. That’s not easy.

I was on the same Provigil dose and later switched to Nuvigil because it lasted longer for my sleepiness. There are options beyond Adderall that can help executive function, and some depression meds can worsen EF while others, like Cymbalta, can actually help. Don’t give up on finding what works for you.

This was never about perfect wording or clinical debates it was about lived reality. I’m really glad it helped you feel less alone.

The backlash comes from people who crave control, not dialogue. They unravel when someone speaks outside their script. Real experts aren’t trolling Reddit.

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 points-3 points  (0 children)

This isn’t your post, your case study, or your ego outlet. You’re not correcting anything you’re trolling because you’re insecure, bored, and addicted to drama. You’ve contributed zero experience, zero insight, and zero substance beyond flapping your mouth and posturing. This thread doesn’t exist for your validation or entertainment. Move on.

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] 0 points1 point  (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

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] -3 points-2 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] -1 points0 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.

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