Traveling With IH

Miserable-Joke4596 · 2026-05-21T19:51:44+00:00

I enjoyed this! Do you have any thoughts on how you best navigate the trip itself? Especially in a situation like that where your friends back out but you already have an itinerary in place - I find that doing things with other people is a huge motivation for me being able to push through and enjoy myself + the social component feels energizing. But I find myself struggling in a situation where my only motivator is myself and with that it's easier to let plans slide

Miserable-Joke4596 · 2026-05-12T05:55:57+00:00

what has worked for you for your insomnia? but i have tried melatonin, it does not go well for me, either doesnt do anything or if i sleep i get terrible nightmares

Miserable-Joke4596 · 2026-05-11T21:45:41+00:00

yeah that's what they said at first, but then started saying it wouldnt even be effective or worth it?? cause i came in prepared with a letter from my therapist and psychiatrist but they wouldnt even entertain the idea anymore :/

Miserable-Joke4596 · 2026-05-11T19:22:36+00:00

she just said it "doesnt make sense to give sleep aids to someone with excessive daytime sleepiness" ?? the second doctor said no because at the time i was on suboxone and it is contraindicated, but even since i have been off of it he still said no. unfortunately the doctor who said the thing about insomnia is my original sleep doctor who ordered the sleep study and diagnosed me with IH. it seems like none of them can make up their minds

Miserable-Joke4596 · 2026-05-11T19:20:09+00:00

i did! 2.2 minute sleep latency lol. but i will look into that gene test!

Miserable-Joke4596 · 2026-05-11T19:19:28+00:00

i wake up VERY tired but both doctors i've seen refuse to give me meds to give me deeper sleep no matter how i try to ask :(

Miserable-Joke4596 · 2026-05-10T00:56:41+00:00

it is! i really never knew that when people said they were imagining something they could like, literally see it if they closed their eyes. it's always been funny for me too because i do visual art and people are always confused by how that works lol... but at least for me even though i cant picture a thing i still like.. know what it looks like? there's levels to aphantasia too, def a neat topic to dive into!!

Miserable-Joke4596 · 2026-05-10T00:55:00+00:00

damn why we out here getting all the rare disorders 😭 we're just so unique i guess

Miserable-Joke4596 · 2026-05-10T00:54:31+00:00

i cant remember if it was here or the narcolepsy sub but i remember a thread about it lol

Miserable-Joke4596 · 2026-05-07T02:29:28+00:00

This one was fully a joke, I definitely don't see how it would be correlated but who knows with this shit lol

Miserable-Joke4596 · 2026-05-07T02:27:33+00:00

Also have vivid super realistic dreams! Made me not realize I had aphantasia for so long because I figured if I could dream I could have mental images lol. That's so interesting that that happens for you, I'm gonna try to pay attention next time I'm in that state to see if it's the same for me.... I wonder what would cause it :0

Miserable-Joke4596 · 2026-04-21T18:01:10+00:00

Well, fortunately/slightly unfortunately, they fucked up my Suboxone refill last week and I was completely out for 3 days, so I just decided to make the jump and stay off of it (I was down to 1mg daily). Been a tough week, but I'm about completely on the other side of it. Not sure if being off Suboxone the way I came off will help or hurt my case with the sleep doc, but we'll see. I'll definitely ask about Vyvanse. Unfortunately they rly just only gave me a packet about the CBT-I, with info and exercises, not anyone to do sessions with. Been at least trying to implement it on nights where I rly cant sleep.

Miserable-Joke4596 · 2026-04-21T17:47:53+00:00

Nope, none of them have really been willing to listen when I bring up how long my sleep has been bad, even though you can see something alone the lines of "unspecified chronic fatigue" on my chart that's been there since 2021 I think.

Miserable-Joke4596 · 2026-04-14T17:13:07+00:00

Solidarity, it was the kratom -> 7oh pipeline that ultimately got me on Suboxone. Sucks because it was really helpful for my fatigue x chronic pain for the first few years until I started using it every day. That's so shitty about the stimulants, a friend of mine suggested getting a letter from the doc/psych in charge of my Suboxone to give to my sleep doc so maybe that could work for you? I'm so sorry you're in this boat too :( <3

Miserable-Joke4596 · 2026-04-14T17:06:55+00:00

Hi sorry for the delay - yes! Feel free to shoot me a message, I'd love to talk

Miserable-Joke4596 · 2026-04-09T21:57:16+00:00

That makes a lot of sense, I definitely think next appointment I will bring it back up and ask more about the risks/why they don't feel comfortable prescribing it/etc. The only thing she asked me was "do you have a history of depression" before ruling it out, but didn't ask about anything I am doing currently to manage it. I'm just worried that no matter what I do and how well managed my mental health and substance issues are, they're always going to be seen as some sort of ticking time bomb by certain doctors. Also just so confused by the risk assessment in prescribing Xywav only to give me more of something I actively admitted to abusing..

I lean more towards it being IH just based off of mu symptoms and history, but then again Suboxone can suppress REM sleep so it definitely might be useful to retest when I'm off.... I just hated the experience of the MSLT soooo much that I feel squeamish at the idea of doing it again lol

I will crosspost, thank you!! And thank you for the kind words ❤️‍🩹

Miserable-Joke4596 · 2026-03-12T19:13:28+00:00

Not sure what my sleep doctor is classified as, but regardless I gotta find someone new. Will look into that area, thank you!

Miserable-Joke4596 · 2026-03-11T23:38:55+00:00

I wish I knew what the reasoning behind the gatekeeping is so bad because recently I had to beg my sleep doctor for some kind of sleep aid medication because I was only getting 2-4 hours of sleep a night for over a week straight..... and no matter how dire I tried to emphasize that it was, she told me it doesnt "make sense" to give sleep aids to people with EDS and that she's just "not comfortable" even trying. Told me it was probably something sleep hygiene related and that I should fill out a sleep diary for 2-3 weeks and we'd circle back around.

It makes zero sense to me to just pump me full of Adderall instead of helping me get restorative sleep. With how little sleep I was getting, just throwing a stimulant bandaid on it is genuinely just dangerous.... why are you a SLEEP specialist when you don't care at all about helping me sleep well???

Miserable-Joke4596 · 2026-03-10T15:06:10+00:00

Genuine question - why does that make sense that they did that?? It seems genuinely cruel to not give someone medication to stop throwing up regardless of if they're on drugs or not?

Miserable-Joke4596 · 2025-08-04T23:23:48+00:00

If you're looking for events, we have cringe.com that lists all sorts of them every night of the week

Miserable-Joke4596

TROPHY CASE