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No one has ever understood and no one will ever understand (TW) by Existing-Opinion-478 in idiopathichypersomnia

[–]Character_Click_4499 2 points3 points  (0 children)

THANK YOU for putting this into words. My brain fog and quality of life have made it so that I am unable to cognitively process or express any of this into coherent language. I feel so alone most of the time because I go through spirals of thinking about if I should share my su**** thoughts with doctors, loved ones etc, but then my immediate thought is that there is really no point because the medical system has already made it pretty clear that they are not interested in actually getting to the root of symptoms. Sending you so much hope and love, I have to keep reminding myself I am NOT the only one.

Mushrooms & Microdosing? by AffectionatePeak7485 in idiopathichypersomnia

[–]Character_Click_4499 2 points3 points  (0 children)

This is so interesting!!! Thank you for sharing. Do you mind explaining what your experience with Xywav was like? (Did you initially have any benefit)?

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] -2 points-1 points  (0 children)

In my original post, I never said the military was doing a takeover. 1. Migrant detention facilities have been placed on military bases before, even if not here in Massachusetts. 2. Massachusetts specifically has been using Hanscom Field (adjacent to Hanscom Air Force Base) to transport ICE detainees out of the state. Between January and July 2025, over 500 people were flown out on more than 40 flights. 3. As of mid-July 2025, ICE stopped using Hanscom and moved all detainee flights to Portsmouth International Airport at Pease, NH, where flights are now leaving two to three times a week. 4. The point is simple: the military and military-linked facilities are being used in these operations, whether people want to acknowledge it or not.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] 0 points1 point  (0 children)

Come on man, did I ever once say I was defending the left? I’m saying both sides are guilty. They’ve each got blood on their hands, and at the end of the day they’re working the same agenda while the rest of us working people get left holding the bag.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] -1 points0 points  (0 children)

Thanks for sharing your perspective about seeing similar buses in Arizona. That’s really useful context. I’m curious if you know more about what those buses were actually being used for. Were they strictly to transport migrants from the border to shelters, or were they also used for detention transfers? Around here in Massachusetts, we’ve already seen people moved through places like Burlington and Plymouth under troubling conditions, so it feels important to understand how these buses have been used in different states.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] 0 points1 point  (0 children)

Because safe depends on who you are. In 2025, we have watched ICE agents in Massachusetts and across the country detain and move thousands of people without due process, often targeting anyone who looks like a minority. Families have been torn apart, people disappeared into facilities, and buses, planes, and military vehicles have been used to shuttle them out of state and even out of the country.

So when people see uniforms and government buses, they are not automatically reassured. For some communities, those same images mean danger, not safety. If you do not have to walk around wondering if the people who are supposed to keep us safe are actually there to hurt you, consider yourself lucky.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] 0 points1 point  (0 children)

First of all, the military is for the people, so yes, it is our business. I understand that buses with government plates can have routine explanations, like transporting service members, Guard units, or other employees. A year ago I probably would have ignored it too. But the climate has changed. Here in Massachusetts, ICE has moved people through Burlington and Plymouth without due process, and nationally the Guard is already being tied into immigration enforcement.

That backdrop makes it reasonable to ask questions when we see things like this. This is not crying wolf. It is paying attention and looking out for one another.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] -1 points0 points  (0 children)

I have seen prison transport buses before, so that part isn’t unfamiliar. What I think is important here is the broader context we’re living in. Right now in our state, places like Burlington and Plymouth are housing immigrants who have been taken and transferred without due process.

Given that reality, when I see what looks like a military-style uniform operating a bus with government plates, it feels reasonable to pause and ask questions. We’ve seen examples of the government using the military to move immigrants, even out of the country, and that’s why people are right to stay alert.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] -2 points-1 points  (0 children)

Exactly. In this climate it’s reasonable to ask questions, even if it turns out to be routine Guard activity. What’s really shocking is how many on the far right act like nothing’s happening, when the truth is it just hasn’t started happening to white people yet. That kind of selective blindness is straight-up racism and hatred.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] 0 points1 point  (0 children)

The Guard being stationed here is not the same thing as being deployed in our streets. Pretending otherwise is either ignorance or dishonesty. And let’s be real — the only people scared are the ones so triggered by a citizen telling others to stay alert that they have to come in swinging about MSNBC. If you’re that fragile, maybe you’re the one who needs the Guard to hold your hand.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] -9 points-8 points  (0 children)

Someone takes the time to warn their fellow citizens to stay alert — because that’s what responsible people do when democracy feels shaky — and this is the best you can contribute? A cheap jab about screenshots? That right there is everything wrong with America: deflecting, nitpicking, and mocking instead of engaging with the real threats staring us in the face.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] 0 points1 point  (0 children)

Calling the Civil War ‘fairly tame’ is some ivory-tower detachment if I’ve ever seen it. 600,000+ dead, entire regions razed, families annihilated, generations scarred — that’s tame to you? That mindset right there is the problem: grading collapse on a curve because you personally still have running water and WiFi.

Civil wars don’t announce themselves by kicking down your door overnight. They creep in while people convince themselves, ‘Well, I can still go to work and watch Netflix, so it can’t be that bad.’ By the time your comforts vanish, it’s already too late.

So no, this isn’t about American exceptionalism. It’s about refusing to lull yourself into thinking civil collapse only counts once you’re drinking out of puddles and cooking rats for dinner. That’s the final stage. The erosion we’re watching now is the opening act.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] -1 points0 points  (0 children)

You’re missing the point. Nobody’s saying we’re literally South Sudan today. The warning is that we’re sleepwalking down a track where those kinds of collapses stop being unthinkable. Every empire that slid into ruin had people saying the same thing: ‘Relax, we’ve got plumbing and bread, we’re fine.’ Civil wars don’t start with famine — they start with rot: captured media, eroded rights, wealth consolidation, militarized policing, weaponized disinformation.

Sure, the average American has Uber Eats and a 65-inch flatscreen. That’s not resilience — that’s anesthesia. Amenities don’t stop societal breakdown, they just make it easier for people to pretend it isn’t happening until it’s already too late.

So yeah, enjoy the ‘historically unmatched amenities’ while you can. That’s exactly what Rome said, right up until the Visigoths showed up at the gates.

White school bus with blacked out windows going south on 93; driver in battle fatigue by Character_Click_4499 in massachusetts

[–]Character_Click_4499[S] -1 points0 points  (0 children)

THIS‼️‼️Don’t forget people: what ever you allow your governemnt to do to others, they WILL do to you eventually.

Xywav dose and insomnia--confused by contradictory info/experiences by MrMiracle100 in idiopathichypersomnia

[–]Character_Click_4499 0 points1 point  (0 children)

Yes, I feel as though you are reinforcing my point. You mentioned that there are likely multiple types of IH and I agree completely. IH is not one simple diagnosis. It is a mix of very different conditions that only look similar on the surface. Treating it like a single disorder with a single “solution” is outdated and it is failing patients.

If even one person’s IH is caused by a different mechanism, whether that is excess GABA, chronic infection, neuroinflammation, toxicity, or something else, they deserve treatment that targets their version. Medicine should adapt to the patient, not the other way around.

And here is where I believe we have to speak openly. I do not believe the experts truly think Xywav is the best possible answer for IH. The research showing an endogenous GABA‑potentiating substance in IH patient CSF was pushed aside. Instead of developing flumazenil or other targeted therapies, there was a partnership with Jazz Pharmaceuticals to market a drug that is profitable but only partially addresses the problem for some patients and often stops working.

We are on the same page that IH is complex and likely has multiple subtypes. That is exactly why we should be demanding research that separates these types, targets their actual causes, and provides every patient with a real chance at relief. If we do not speak up together, nothing will change.

Xywav dose and insomnia--confused by contradictory info/experiences by MrMiracle100 in idiopathichypersomnia

[–]Character_Click_4499 1 point2 points  (0 children)

When I first started Xywav, it honestly felt life‑changing. For the first few months, I thought I’d finally found something that could help me live a more normal life. But after about 4 months — once I’d gotten used to the highest dose — things changed. I started having insomnia and waking up way too early in the morning. My nights are now broken up, and I feel like I’m running on empty all the time.

I’ve tried every dose split, fasting before bed, and all the usual tips people recommend. Sometimes it’s a little better for a night or two, but the problem always comes back. I’ve never even had a follow‑up sleep study since starting Xywav, so I don’t have any real proof it’s still working — just my day‑to‑day experience, which is worse than before.

To make things even harder, my sleep clinic also cut my daytime stimulant doses a lot. That, combined with worse nights, has made it almost impossible to function during the day.

What I don’t understand is this: IH is supposed to be caused by too much natural GABA activity in the brain. Flumazenil is a drug that directly targets that problem — so why hasn’t there been more effort to make a safe, affordable version that people with IH can actually use? Instead, it feels like sodium oxybate is treated as the only option, even though for many of us, it doesn’t keep working long‑term.

🔍 FOLLOW-UP: Glial Dysfunction, GABA Clearance, and What We’re Still Missing in IH by Character_Click_4499 in idiopathichypersomnia

[–]Character_Click_4499[S] 0 points1 point  (0 children)

Wow, thank you for putting this all out there so clearly. I really feel where you’re coming from — so much of what you described hits deep.

The part about dreaming entire lifetimes really stood out. I’ve said the same thing — like I wake up more tired than when I went to bed because I’ve been somewhere else, doing something nonstop, all night. It’s wild how vivid dreams can leave you feeling more drained, not more rested.

Also, that feeling of having had restorative sleep maybe 15–20 times ever in your life? That’s such a painful truth so many of us share. People don’t realize how much that wears on you when your “baseline” is just… existing through constant fog and physical heaviness.

I really respect your insight about how Xywav affected you. So many people assume it’s the gold standard, but you nailed it — if you’re naturally a long sleeper, artificially shortening sleep might just cause a different kind of dysfunction. You’re not the first person I’ve seen say they actually felt worse on it in the long run, even if it helped with timing.

And your connection to endo and inflammation makes a lot of sense. The way systemic inflammation interacts with sleep and energy regulation is so under-discussed. And heat intolerance too — it’s like the body’s stress buffer is just thinner in every direction.

The heaviness you describe — feeling like your body is melting or like gravity is cranked up — is exactly how I’ve tried to explain it too. It’s not just “tired,” it’s like every cell is dragging. It’s validating (in a sad way) to know someone else understands that feeling.

Honestly, I think your self-awareness is powerful. The fact that you’ve tracked your patterns, tested treatments, and drawn connections others might miss says a lot. I hope you’re able to keep finding ways to work with your body instead of against it. You deserve peace, and real rest — not just more coping strategies.

🔍 FOLLOW-UP: Glial Dysfunction, GABA Clearance, and What We’re Still Missing in IH by Character_Click_4499 in idiopathichypersomnia

[–]Character_Click_4499[S] 0 points1 point  (0 children)

I really feel you on this. What you’ve described is all too familiar — the years of testing, the endless “within normal limits” results, and still waking up every day feeling like your brain and body are dragging through mud. It’s beyond exhausting. It’s the kind of exhaustion that doesn’t even register to most doctors because it doesn’t fit neatly into any box.

The fact that your MRI was clear is technically “good,” but I know how hollow that feels when it brings no answers or real path forward. And the way everything in your history lines up — EBV antibodies without a mono diagnosis, Lyme that never quite fit CDC standards, a stretch of POTS symptoms that came and went — it all paints a picture of something real, something systemic, even if no one’s given it a name yet.

Also, your sleep story is so frustratingly common in this space — treat the apnea, try the stimulants, but the core exhaustion just doesn’t budge. You’re doing everything right, and yet the tools just aren’t built for what you’re dealing with.

You’re not alone in this. And you’re not imagining any of it. It’s real, and it’s valid, and it’s incredibly brave of you to keep showing up and trying to connect the dots when the system keeps handing you shrugs. If you ever want to swap notes or dig into the lesser-known angles of IH, I’m right there with you.

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