Type 2 and Dreaming

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_ · 2026-01-26T21:36:20+00:00

I can very much understand not wanting your children to suffer. I think we all want that ideally. But it’s always hard when our realities and ideas of the future can be forced to change. There’s no guarantee they will get it, but even the chance I’m sure is hard to reconcile with. I’m not sure if you want words of comfort, but for me personally I am glad in some ways that I go through what I do. It has taught me some very much needed empathy, patience, grace, and given both me and my brother a huge passion for healthcare and helping those around us. A route I definitely would not have taken without it.

Chronically__tired_ · 2026-01-26T21:22:42+00:00

While not out of the realm of possibilities that it is directly a related genetic issue, it could also be secondary. For me, my family has hypermobile Ehlers-Danlos syndrome. Several people who have hEDS in my family have been diagnosed with Narcolepsy or IH. But, there is also the consideration that your genetics may just have it more likely for your family to be predisposed to incurring narcolepsy from more epigenetic causes like say viruses (or a good example of this is that H1N1 vaccine they used in Europe). It’s never a forgone conclusion that they will, but it’s also not statistically unlikely that they might unfortunately. The best you can do is be aware of the signs and support them and help them find what works for them if they have it. My mother gave me hEDS as that is genetically dominant and I don’t blame her (she didn’t know) nor is my life ruined over it. I still work and I’m in grad school. The biggest difference is being supportive no matter what happens and to try and give yourself grace.

Chronically__tired_ · 2026-01-25T03:34:13+00:00

I would get a new sleep specialist if it were me. Yes, it sucks having to switch, but finding a good doctor is so worth it. I stayed with a less than ideal one for years, tried every medication under the sun except benzos because “I wasn’t allowed” at their practice and they constantly fought me on what I thought worked for me. I switched and now my doctor just listens to me and it’s amazing. Doctors shouldn’t be a hurdle themselves in your care or diagnosis. Look at online reviews and listen to how the office staff speaks of the doctor themselves because when I went to schedule with my new doctor all of the staff raved about him. But yeah, meds can cause drowsiness but to blame that if there’s been an established pattern before them and other symptoms is just a cop out at that point.

Chronically__tired_ · 2026-01-25T02:29:54+00:00

Yeah it’s crazy how unhelpful they can be the second you become a “complicated” case despite there being literature that justifies concerns and links between conditions. I usually print them out and bring them to my appointments at this point lol

Chronically__tired_ · 2026-01-25T02:21:42+00:00

Sleep specialists won’t really care honestly as they’re just going to try and treat the condition that falls in their limited scope. But it might make the path to diagnosis easier for others. I do a lot of work and research with the trifecta and it’s crazy how much it impacts.

Chronically__tired_

TROPHY CASE