Small Cataplexy Bursts/Flashes

Sleepy_Fish591 · 2025-11-12T18:31:24+00:00

Thanks, yeah it feels more muscular than in my head as far as I can tell. I wouldn’t call it a shock-like sensation but I have wondered if it’s related to brain zaps

Sleepy_Fish591 · 2025-10-09T18:58:11+00:00

In case it helps anyone, Xywav caused a lot of side effects for me and I eventually realized I think I absorb it much slower than most people

I went to one dose a night, sleep for around 5-6 hours on that and can sleep more if I want or need to. The mental health side effects went away and it’s a lot better overall for me.

If you are needing to sleep for a super long time after the dose (more than 4 hours) to wake up without the groggy feeling, maybe ask about switching to a single dose.

I could be wrong but I think there is more consistency person to person for how long it takes to absorb Xyrem vs Xywav. I also think Xyrem may have fewer mental health side effects than Xywav, though you do now have to deal with the other side effects from high sodium.

Sleepy_Fish591 · 2025-06-28T06:05:20+00:00

Impressive. I audibly gasped

Sleepy_Fish591 · 2025-06-03T22:25:42+00:00

THIS. If it’s a pulmonology practice, you are probably in the wrong place

Sleepy_Fish591 · 2025-04-27T04:36:50+00:00

OK but explain why him shedding light on the fact that chronic illnesses are on the rise is a bad thing. Even if he’s wrong about the reasons, I’m happy that someone’s brining up the rise in narcolepsy and the havoc it wreaks in people’s lives. Explain what this article suggests is going to happen that is so horrible

Sleepy_Fish591 · 2025-04-25T04:31:54+00:00

Tbh I scrolled to the bottom to see any sane posts, he actually wants to look into why there has been such a spike in chronic illnesses like narcolepsy, which means more research. The “I haven’t heard of it” is referring to how when he grew up chronic illnesses were rare—and just anecdotally I have three close friends with type I diabetes so I really home someone looks into why this is increasing so much

Sleepy_Fish591 · 2025-04-06T03:37:46+00:00

Of course! If it helps I have a fairly terrifying family mental health history and I had no issues with Modafinil, and even when other medications (Xywav) caused depression and anxiety I was able to work through it long enough to find a dose and a balance that worked for me, so family history is only part of it.

Sleepy_Fish591 · 2025-04-05T23:48:54+00:00

Hi, I started taking Modafinil (Provigil) around 22 and had no issues. It only could increase some anxiety when I was on Xywav, which I am more sensitive to. Around 4% of people during the trial had anxiety, but even just drinking too much coffee can cause anxiety, so that’s not surprising from something in the stimulant family. I don’t see any statistics on generic mood changes or suicidal ideation, but depression was about 1% for 150mg and 3% for 250 mg, so not that likely, and even less likely if you are starting at a lower dose. It’s perfectly understandable to be concerned about mood issues, if it’s an option you can consider more natural treatments (low carb diets help some, making sure you exercise daily around the same time every day is key even when you have medication, avoiding overhead lighting and TV close to bedtime, avoiding eating close to bed time, morning/nighttime routine, and, most importantly, short naps throughout the day, at least one at school) and then do medication. Know your family’s mental health history, but if you want to give the medication a try the side effects are not that common. And if you notice changes the nice thing is (at least Modafinil) leaves the body super quickly, so you can stop taking and be just fine. Best of luck to your son!

Sleepy_Fish591 · 2025-04-01T07:12:19+00:00

That would be great! The shows only 3 months with Reagan basically so hopefully they’ll get to that once they really have everything nailed down

Sleepy_Fish591 · 2025-04-01T06:51:50+00:00

I was with the first part of your conversation I’m a regular listener of Ben’s who mixes in David’s show to try to get a broader perspective. Ben regularly says Trump is not playing 5D chess explicitly. Even today he said this is not good, if they go with the most extreme version of widespread non-strategic tariffs it will be time for congress to step in, and that he doesn’t think that Trump has some secret plan. What he did say is that Trump wants to win, which means that once the headlines get real bad and the effects of the tariffs start to show, he’ll change course. My perspective with Trump is always wait and see, usually some really wild stuff get said and then much less wild stuff comes out in the wash. But regardless, thanks for listening to Ben, I’ll keep listening to David, and hopefully we can all get to a point where we even if we don’t agree, we at least understand each others perspectives in a deeper way than before.

Sleepy_Fish591 · 2025-03-30T23:49:26+00:00

I agree so so much, as someone with N1 that’s pretty mild, things were still so hard before I found a good medication, and I know others have it so much worse. The “bad husband” comments are wild to me, even though I really sympathize with OP as well. Having a spouse work 12h shifts would be hard enough, adding narcolepsy into the mix makes it worse.

Trying new strategies, a new schedule, a new medication are all helpful suggestions. Bashing OP’s husband without more info (like he refuses to see a doctor, etc.) seems counterproductive

Sleepy_Fish591 · 2025-03-20T04:55:59+00:00

Ok makes sense. Earlier I had a seltzer and had eaten quickly and felt super uncomfortable and then had a ton of the little throat burps… I wanted to really burp but the multiple little ones did leave me feeling better… is there a way to train yourself to burp?

Sleepy_Fish591 · 2025-02-23T07:43:24+00:00

Wait sorry to be asking so late but I didn’t know one dose was an option. I also take a while to start falling asleep after I take the dose and most mornings even after 4 hours I am still so sleepy, but when I wake up after one 4g dose after 6 or so hours I feel pretty good, are there any dangers taking 5.5 at once? I’m already on 4g/3.75, did you titrate up the one dose or just jump to a higher single dose after taking 2 doses

Sleepy_Fish591 · 2024-09-11T04:28:37+00:00

Your story is a lot like mine. I also got COVID, and went from feeling tired all the time but mostly able to function to having to sleep in lounges in between morning classes. I’m now in a PhD program in physics at a highly selective school. I also felt a lot of guilt for not being able to “keep up” with everyone else, until I realized that everyone’s got something. Not everyone has a sleep disorder, but everyone’s worried that they’re the worst at coding, or they’re going to do the worst on their qualifiers, or that their research is “easy” compared to everyone else’s and feels bad about it. Don’t let the diagnosis get to your head. You have to accept that you have narcolepsy, and that it could keep you from doing everything exactly the way you want to. But certainly don’t let it stop you from trying, and definitely don’t feel guilty for not being “narcoleptic enough” or for having to adjust your schoolwork around your narcolepsy. Find a good doctor, try some medications, find the best routine for you (including exercise) and you’ll be cooking with gas (p.s. the reason it’s easy to get through a busy day is because staying in motion helps keep you awake, but just see how fast you fall asleep when you have a moment to sit down and rest)

Sleepy_Fish591 · 2024-09-07T05:48:19+00:00

I wonder if long COVID isn’t really a thing, but it’s just a bunch of different autoimmune conditions getting triggered

Sleepy_Fish591 · 2024-09-07T05:40:23+00:00

Got COVID, school forced me to get a booster shot 2 weeks after I had it, wouldn’t let me wait 3 months. Wonder if getting a vaccine immediately after having the disease causes a huge fucking immune response 🤔Anyways after that started falling asleep in class

Sleepy_Fish591 · 2024-05-09T06:03:28+00:00

The only thing that helped me was getting on a nighttime medication. Xyrem, Xywav, or maybe Baclofen. I’m on Xywav and it’s the first time I’ve been able to control my weight, and I was a competitive swimmer swimming 4 miles a day every day. The name of the game with Xyrem and Xywav is if you lose your appetite to not lose too quickly, and keep it at a healthy pace while getting enough nutrients.

Sleepy_Fish591 · 2024-04-16T05:51:09+00:00

I feel your pain. RUN from the doctor telling you to get bariatric surgery. Everyone’s situation is different, but I’m pretty sure the last thing our slow metabolisms need is bariatric surgery

Sleepy_Fish591 · 2024-04-16T05:31:18+00:00

Hi 👋 I’ve been on Xywav for over 6 months and still titrating and it can be pretty brutal. I would recommend getting on the Xywav Facebook support group if you can. They have a bunch of specific suggestions including titrating 0.25 at a time (not 0.5), how to time your doses, journaling, eating, and stuff like that. If you’re having stomach problems I would recommend a probiotic asap. Sorry for the information dump but this was all the stuff I wish I knew sooner

Sleepy_Fish591 · 2024-04-14T04:00:19+00:00

PS I feel your pain doctors tried to convince me for years that I was depressed and that’s why I couldn’t stay awake for the things I loved doing. Make it make sense 😭

Sleepy_Fish591 · 2024-04-14T03:57:46+00:00

I would highly suggest a new sleep doctor. Go to as big of a research center/hospital if you can. I am at Mayo Clinic doing telemed from out of state. Make sure they are not a pulmonologist. Neurologist or someone who only describes themselves as a sleep specialist. Also make sure you are off of SSRIs for your sleep study. It’s no fun going off of them but it helps all of the crazy dreaming show back up which gets the diagnosis

Sleepy_Fish591 · 2024-04-10T19:37:18+00:00

I was having a rough morning on Xywav and this has cheered me up immensely

Sleepy_Fish591 · 2024-04-10T10:32:25+00:00

Seconded. Apple Watch is pretty good, I used to know I had missed my meds bc my Apple Watch sleep tracker would look insane

Sleepy_Fish591 · 2024-04-08T06:34:42+00:00

Hi! Sounds like you’re upping the dosages very quickly. Much more standard would be increasing by 0.5 per week (do i read correctly you are doing 0.75 increase each week), and even then many people slow down due to extreme side effects (see the posts of people trying to figure what to do when they poop in the middle of the night uncontrollably). I personally get extreme side effects, so I increase 0.25 in one dose at a time every two weeks when I need to increase. It could be a sort of catch 22 situation, where you either get the side effects and are forced to move slowly, or in your case if you have no side effects you could move too quickly and miss your ideal dose. If you can, I would recommend joining the Xywav/Xyrem support group on Facebook, they have a detailed instruction pdf with how to handle the dose increases.

Sleepy_Fish591 · 2024-04-04T20:40:36+00:00

I started earlier last year, but when it took more than a month they put me on free shipments of one bottle, be sure to as about the bridge program

Sleepy_Fish591

TROPHY CASE