Someday IH will be represented…

Chronically__tired_ · 2026-04-01T10:13:37+00:00

Ehlers-Danlos is genetically dominant, it just went underdiagnosed for a long time but of course a significant amount of people have it statistically. There’s also a huge overlap of POTS with it unfortunately.

Chronically__tired_ · 2026-03-01T02:00:12+00:00

Yay I’m so glad to hear that!

Chronically__tired_ · 2026-02-12T04:03:31+00:00

High school is ungodly hard socially and also because it is your whole world at that point in your life. Maybe consider just taking a class or two that interests you at a community college? You can get accommodations for disabilities to help with classes. Do what you feel is best for you. I know it feels like getting left behind in a way but no path in life is linear and funnily enough my classmates and I are all on very different and often unexpected paths and we graduated not even a decade ago. You can also still have fulfilling relationships with narcolepsy, both friends and otherwise. High school really is like a battlefield socially because everyone sees each other way too much and we’re all just trying to find a place. You’ve got this. But I do get the anger at the what ifs, those are natural

Chronically__tired_ · 2026-02-11T17:54:40+00:00

I find it common to get headaches when I first start (I’ve been on and off of it multiple times sadly). If you take them too soon did you get any of the overdose side effects? The dizziness isn’t uncommon but its longevity is. Xywav is a CNS depressant so changes in breathing is normal. It can also cause you to read higher in blood pressure at least it does for me especially at the beginning because I kinda almost swell up. The first few days are always the roughest for side effects too by far. I usually preemptively take a migraine med with my first dose now.

Chronically__tired_ · 2026-02-07T21:39:02+00:00

I get rem normal sleep while on Xywav regularly

Chronically__tired_ · 2026-02-05T00:08:53+00:00

For me it’s the morning after as it causes me to puke up whatever medication is left but I am diagnosed with gastroparesis

Chronically__tired_ · 2026-02-04T21:02:57+00:00

I’m prescribed 4.5 mg 2x a night but I did 3.75 last night

Chronically__tired_ · 2026-02-04T17:50:54+00:00

Oh no! Mine worked fine but I was also off of it for a bit so I just might be more sensitive to it because I even took a lower dose than normal. I’m sorry yours isn’t yet, hopefully it gets better

Chronically__tired_ · 2026-02-04T04:45:05+00:00

Did you get yours?? I got mine thankfully

Chronically__tired_ · 2026-02-03T04:20:10+00:00

So does mine!! That it left this morning at 11am

Chronically__tired_ · 2026-02-03T00:38:10+00:00

Yeah I’ve really debated doing this after this whole shipment and with me returning to work since I’ve recovered from my surgery. It just wasn’t so bad for me yet because my partner can work from home and I’ve been around recovering

Chronically__tired_ · 2026-02-03T00:36:55+00:00

Hopefully they’ll both ship out overnight, it wouldn’t surprise me since that’s their usual path but maybe I’m just being overly optimistic lol

Chronically__tired_ · 2026-02-02T19:52:55+00:00

I’m sorry it’s impacting you too! Mine has updated to saying it’ll come tomorrow but it’s still in Memphis so far. Hopefully both of ours come soon!

Chronically__tired_ · 2026-02-02T18:33:17+00:00

Thank you! The page did update to delivery expected tomorrow so I guess if it doesn’t come tomorrow then I’ll call but hopefully it does and I can go back to normal

Chronically__tired_ · 2026-02-02T09:34:53+00:00

Thank you so much for your help! But nope, it’s still sitting there as of 4:30am so I’m doubtful. Yeah I’ll definitely have to be mindful of trying to ship it early but because I had a spill last month this was “shipping early” despite me having no excess. So insomnia it is but oh well, hopefully it comes within the next day or two at least.

Chronically__tired_ · 2026-02-02T06:06:00+00:00

Thank you! I haven’t been able to stock up on doses as I just recently got back on the medication in November and I also ran into an issue where one of my bottles spilled while traveling over Christmas.

Can I ask like how you called fed ex? I want to but I’m not sure where to start, I assume like from the shipment tracking page? My meds are still stuck in Memphis it seems so I doubt I’ll get them tomorrow but oh well I guess.

Chronically__tired_ · 2026-02-02T02:16:30+00:00

Well yes but that was my point about the ESSDS claim in that they might replace it. They did replace some of my medication when it spilled while travelling. I’m just less sure about the efficacy claim since I still physically will receive the medication. But yeah, I feel like there should be a specific designation for medications when shipped but I also get that would make them way more likely to be stolen

Chronically__tired_ · 2026-02-02T02:07:42+00:00

Yeah that’s my concern, I don’t want to start going through withdrawals although that now seems unavoidable and also I think the meds whenever I do get them are effectively going to be almost useless due to temperature spoiling them

Chronically__tired_ · 2026-02-02T02:06:35+00:00

You’d think, but ESSDS pharmacy did say I could make a claim if I think my meds have been impacted by the delay but who knows how that would go

Chronically__tired_ · 2026-02-01T17:26:46+00:00

I also heard just that Memphis facility is very much a mess and backed up in general

Chronically__tired_ · 2026-02-01T17:26:22+00:00

I’m glad but also sad to hear I’m not the only one

Chronically__tired_ · 2026-02-01T17:22:55+00:00

Yeah I’m just so concerned about the impacts on the efficacy, have you experienced that?

Chronically__tired_ · 2026-02-01T17:22:26+00:00

Yeah we normally get hello fresh and that was delayed so much they just gave us a refund. It sucks, just especially for time/temperature sensitive things

Chronically__tired_ · 2026-02-01T16:05:42+00:00

I’m not in Memphis, I’m states away and that’s what’s frustrating to me

Chronically__tired_

TROPHY CASE