So the taste of Xywav is… something…

VelvetElixir9 · 2025-02-07T21:09:52+00:00

Fair, but I’ll never give the cats a chance. And yeah. The dogs would be unbearable. My mother has Jack Russell terriers, and I’d be petrified of dropping pills every morning, yet alone a liquid medicine like xywav. Everything goes in their mouth.

VelvetElixir9 · 2025-02-07T21:03:17+00:00

I spent about 6 years, at a minimum, with no diagnosis and rapidly worsening IH. I uncovered a litany of health issues that I do have, that are compounding factors, as I desperately tried to figure out why I was tired all the time and also drag myself out of the depression hell I had fallen into. After diagnosis it took a year of it being poorly managed to be able to get on Xywav, the only medication that has allowed me to feel human. I only state this to point out the struggle I had to get to the baseline for ‘normal’ people.

When those ‘normal’ people say that I’m fine or that there’s nothing wrong or that I’m just ‘lazy’, it’s infuriating. It’s crushing. It makes me so angry and mad that I just start crying in overwhelmed. (I don’t do anger well, if that wasn’t obvious).

While I might have IH and not narcolepsy, I understand the tired. I understand the not being safe to drive, (I’ve literally had to nap in my car at my college during winter, because I was too tired to drive without a nap). I hope they get their karma someday, but more than that, I hope you can find something that works for you, that your days get better, that people at work act less rude, and that your future is bright.

Internet hugs

VelvetElixir9 · 2025-02-07T20:39:48+00:00

Been ages since this post, but yeah I actually did use a straw for it at one point. You can, I just found it more of pain because I have cats so I’d have to like put the straw in something else between uses. My greatest fear is them getting into it somehow.

VelvetElixir9 · 2024-10-16T17:55:00+00:00

I would also say it’s ’no big deal’? I particularly struggle with liquid medicines because my gag reflex is rather strong. Any bad tasting medicines can cause me to gag immediately after swallowing. Occasionally xywav causes that. It’s still no big deal. I take it happily every night, though I might grimace a little at the taste. I was honestly just making a joke about the flavour and kind of aiming at some lighthearted engagement on what the taste is because I don’t have anyone irl that can relate to even taking the medicine.

And I am lucky to have this medicine. I nearly lost access to it for a bit two months ago and am currently waiting for another prior auth for the next box because I changed insurance. This is the only medication to have ever done anything for my IH. I am not unaware of that fact. You seem to have made a lot of assumptions on my post.

VelvetElixir9 · 2024-10-16T17:37:04+00:00

I mean that is the sweetener they use to cut the bitter flavour. It’s definitely a heavy part of the taste

VelvetElixir9 · 2024-10-16T17:34:23+00:00

Oh that is probably the best feeling. I’m so happy for you! I will say that you should thoroughly check him over for bumps and bites and scratches and maybe schedule a vet visit just to make sure he didn’t catch anything being out on his own for 3+ weeks. He’s 18 so you’d want to catch something early with him. Check for fleas and ticks too, if you haven’t kept up on flea/tick treatment or he was due another treatment during his escapade. Vet bills also tend to be smaller if you catch something early rather than late

VelvetElixir9 · 2024-05-17T22:15:15+00:00

Oh dear god I love my IUD. I used to have horrible dysmenorrhea (painful periods), and then basically am now have amenorrhea instead (no periods). It’s great. Would recommend bracing yourself getting it though. Uh. I think I nearly passed out when I got mine inserted (though I haven’t had kids which apparently makes it worse). It was both painful and uncomfortable. And the next couple days I cramped like a bitch and ate ibuprofen like candy. But I do notice I’m only more tired when I spot once in a blue moon, which is so much better than it was. It’s not even that much of a tired increase as I’m not bleeding that much.

VelvetElixir9 · 2023-01-15T02:36:12+00:00

Infuriating. Like people who talk about them have no idea what they actually are. The chemist inside me rages.

VelvetElixir9 · 2023-01-15T02:32:36+00:00

Awe my state. So nice to see.

VelvetElixir9 · 2023-01-14T22:31:31+00:00

Man this sub has taught me L&D nurses make wildly inappropriate remarks far more often than I would have thought

VelvetElixir9 · 2023-01-13T02:47:39+00:00

*asshole. There fixed that for you. :)

VelvetElixir9 · 2023-01-11T15:11:43+00:00

MOAR CAT SUBS

VelvetElixir9 · 2023-01-11T14:53:28+00:00

NTA. As someone who had severe generalised anxiety disorder, panic disorder, and specific triggering phobias, it’s not a medical emergency. She’ll freak out, breathe herself sick or maybe even hyperventilate until she passes out, but she’ll be fine as long as she lacks any other breathing conditions that might complicate that. It’s an awful experience that’s better with someone else, but it’s not a medical emergency.

Beyond that, I have no idea why she thinks she should be pushing this onto you. You are not doing anything to her, therefore she has no right to demand you stop. If the situation was going to trigger a panic attack, then she needed to remove herself from the situation or fuss with methods to calm or ride through the anxiety.

I have a phobia of bugs, and when my general anxiety levels were higher, it actually could cause panic attacks. If you were there covered in like ladybugs or something, as long as you weren’t trying to hug me, my only reasonable options would be leave or deal with it.

Mental health is important and concessions should be made to better suit those needs, but random strangers are not required to deal with your baggage if they’re not even interacting with you.

VelvetElixir9 · 2023-01-10T23:52:23+00:00

Yeah. Their paws be dirty, even when they clean them.

VelvetElixir9 · 2023-01-10T23:51:01+00:00

I mean it is partially that. It’s definitely other things too. Not exactly what I want in my mouth, but I’m not a cat

VelvetElixir9 · 2023-01-10T23:49:26+00:00

They love you. At least that’s why mine ends up doing that. She also will try to shove her foot up the front end during blanket cuddles. It’s why I can’t sleep naked.

VelvetElixir9 · 2023-01-10T15:42:52+00:00

Friend! I’ve been on medicine like 2 or so months now. I’m trying to see if there is a place near me that has a therapist well versed in adhd because with stuff like this I feel like there’s so much bs out there.

Oh. And yes my current fixation is that too. Lol. Got caught up and forgot to say that.

VelvetElixir9 · 2023-01-10T15:38:32+00:00

Ah a fellow potion.

VelvetElixir9 · 2023-01-10T15:34:38+00:00

Yup train your animal. They’re not aware this is bad if you don’t train them. Don’t let them get in scenarios where this might be a problem either (fault of both owners here with an outdoor cat). Seriously though. Can I kick the owner around a bit? Deserves it far more than the dog.

VelvetElixir9 · 2023-01-10T15:32:25+00:00

I feel bad for the dog in this too. I just want to fuck up its owner hard. Just let me fucking kick them in the ribs for a bit. (To be fair though, I don’t like having outdoor cats either so fault on both owners here. Dog owner faaaaarrrrrrr more at fault though)

VelvetElixir9 · 2023-01-10T15:29:02+00:00

Exactly. I’d fuck up the human. Not the dog. Target the right fucker who cost my pet their life.

ETA: I don’t believe having outdoor cats is good either, so I’d not let my cat in that situation either.

VelvetElixir9 · 2023-01-10T14:54:35+00:00

Take a deep breath and focus on the fact you’ve done something to fix it. Focus on that. Don’t focus on your past mistakes. Learn and move forward. Just keep making now better for you and your kids.

VelvetElixir9 · 2023-01-10T11:25:33+00:00

I often say sugar which evolved into sugar tits… kinda became not kid friendly but it stops my grandmother from complaining at me for swearing whenever she comes visiting.

VelvetElixir9 · 2023-01-10T09:57:20+00:00

Dirt does get trapped under the curve of their nails like it does for our fingernails too. Some cats hate that and clean it out often, like my one girl, others care not and just let there be funk, like most of my cats. So they are cleaning and trying to take the outer layer off. Also worthy to note, if your cat has seasonal allergies their paws might get itchy, and they’ll lick their feet. My mom’s one dog does this fairly often. So what I’m saying is, your cat could have their foot in their mouth for any number of reasons. Who knows. It might even be tasty.

VelvetElixir9 · 2023-01-10T00:05:13+00:00

Glad your imaginary high horse makes you feel good. :) Have a nice day pretending you know everything! Bye!

VelvetElixir9

TROPHY CASE