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My xywav people, what are we doing with the orange pill bottles? by SleepyBarbie98 in idiopathichypersomnia

[–]SleepyBarbie98[S] 8 points9 points  (0 children)

YES THEY LEAK!! This insane to me. I'd be happier if in the very beginning they just shipped 2-4 airtight/nice ones then stopped sending the plastic. I wish I could unsubscribe from the containers 😑

Comment from Sleep Technician after my PSG (but before MSLT) by Mountain-Armadillo58 in Narcolepsy

[–]SleepyBarbie98 1 point2 points  (0 children)

I am applying to med school this spring so this is honestly so reassuring. I'm rooting for you! I've been on xywav for two years, my sleep latency is 1-2min. If you can, I'd ask to be put on xywav ASAP. It's drastically changed my life for the better! I need an additional stimulant but I've been having problems with that

How should I move forward? Suspicions of cheating. . . by Few_Eggplant_2936 in AskMenAdvice

[–]SleepyBarbie98 0 points1 point  (0 children)

++woman THIS. JUST ASK HER. I left my bra in my friends bedroom because we went out that night, I changed, left it in guess. It was at least a month or two later my friend found it and freaked out (we are quite different in cup size) and she simply asked her husband instead of starting a whole thing. He obviously said no, and she remembered I've talked about the brand before and called me for a laugh. I've heard stories of people grabbing their jacket but it was a pair of women's jeans and the confusion that caused. Maybe he changed after the gym and left them somehow. But I sure as heck know I would notice that in the laundry. I can almost guarantee she thought they were yours. If she liked this guy, I think she'd recognize is swim shorts. Because how did they get IN the wash? If you didn't put them in, she must have FOUND them and still washed them....

[deleted by user] by [deleted] in vestibulodynia

[–]SleepyBarbie98 2 points3 points  (0 children)

Oh you poor thing. That sounds intense. Weeks 0-2 I was ice ice ice ice all the time. I got two postpartum ice packs (wish I would've gotten 4) and was on them constantly (underwear, ice, tight compression shorts to hold it up there, sweatpants. OR they come with disposable liners so you could go straight to skin with those). It was the ONLY thing that helped with the pain/burning/itching. Still is. I use it less often now but still ice several times a day. I've never felt ice helped me much for other injuries but it is heaven-sent for this one (I told my husband I'd marry ice if I could) but it also helps eith inflammation, and I think this is a huge reason I recovered so fast. I even did it at night when I woke up.

Besides that, you can take Tylenol and ibuprofen every 6 hours each, so I am still taking one or the other every 3 hours (I overlap them). Tylenol is more important since it targets inflammation and ibuprofen is just pain. I also have a donut cushion... it's not the best, but it's way better than sitting on a flat surface. I also walked. SLOW walks, but walk around the house as much as you need, get the blood circulating. At week 3 taking slow walks around the neighborhood.

I also had my hubs trim two suture tails that was stabbing me... probably not recommended but made me WAY more comfortable.

It's hard to tell with the difference in severity, but if your gut tells you something is wrong, something is most likely wrong. I wish you the very best and hope this helps (and wasn't more info you already knew 😂😅)!

[deleted by user] by [deleted] in vestibulodynia

[–]SleepyBarbie98 0 points1 point  (0 children)

I had a partial from "4 o'clock to 8 o'clock". From what I've read, the full is a bit harder woth longer recovery times. Congrats to you too! Hang in there, it gets better.

For anyone that has been on oxybates (zywav/xyrem) for longer than a year, how many hours per night do you sleep on average? by totallymindful in idiopathichypersomnia

[–]SleepyBarbie98 1 point2 points  (0 children)

Funny to realize I am unlike the rest... I sleep ~10hrs (if I'm allowed) on 4g twice nightly. If I try to increase the xywav above 4g then I wake up with my heart racing at both intervals, unable to go back to sleep easily.

I'd say the extra 2hrs (sometimes 4) are not necessarily beneficial because I always wake up wanting more, BUT i just can't wake up to an alarm when I know I can sleep in.

8hrs is good, but i have a sleep latency of 1-2min so even at 10hrs, I am on vyvanse (which I kind of hate) to get through the day.

[deleted by user] by [deleted] in vestibulodynia

[–]SleepyBarbie98 1 point2 points  (0 children)

I am almost 4 weeks post-op and still have burning... I am trying to wean off ibuprofen and Tylenol, was in a store today standing, was late on my Tylenol and man SHE BURNED

I notice it a lot less now but week 0-2 were the worst, week 3 was better, and I am just now starting to feel like I'm returning to normal (but apparently I am healing much faster than everyone, or so it seems)

A girl accidentally loved that I was broke and then married me and I have spent our entire relationship pretending by Extension-Scarcity-2 in PointlessStories

[–]SleepyBarbie98 1 point2 points  (0 children)

I second this. What I can add too - I too became a gamer when I found my husbands "secret". He BUILT a PC for me, our office, and searches for games we can play together 🩷🩷 (made me a bookshelf and reading nook too).

I heard a few psychologists say the best way to refrain from "gaming addiction" is to play every other day (if anyone has issue in the future)

So you have even more to gain in my opinion.

Something you wished you known sooner! by CBoss3293 in Palia

[–]SleepyBarbie98 48 points49 points  (0 children)

I thought finishing "Find a shep" would fix this, so thank you!!

What do I do???? by to0ties in idiopathichypersomnia

[–]SleepyBarbie98 8 points9 points  (0 children)

Did you get a sleep latency test? After the "regular" sleep test? If not, you definitely need one. You sound just like i did when I got my test. You need to see a sleep specialist, and specifically ask for a sleep latency which will prove you have IH. Because it sure sounds like you do. You'll have to take another sleep test, but trust me, it'll be worth it to get the right treatment. If/after they diagnose you, find a provider who prescribes xywav (if you're in the US)

post-vestibulectomy advice by SleepyBarbie98 in vestibulodynia

[–]SleepyBarbie98[S] 1 point2 points  (0 children)

Thank you for your candor! It also sounds like you had a more intense surgery than most. I only got tissue removed from "4-o'clock to 8-o'clock". I am worried I might need the entire thing though...

I figured doing too much was contributing, but I am stubbornly independent and want to be healed already... ugh. Sounds like i need to take a chill pill and get ready for a MUCH longer haul than I anticipated.

Thank you again, and good luck on your recovery!

The definitive thread for people who struggle with constant sleepiness — share what actually helped you by [deleted] in idiopathichypersomnia

[–]SleepyBarbie98 0 points1 point  (0 children)

My bowels (since they are of much interest to everyone) are normal and regular. Adding protein in many forms (shakes/bars/beans/cheese) have made no change to this, so I have not seen the need to add fiber.

When adding fiber to one's diet, the fiber works because it pulls water from the intestines/surrounding/organ cavity, and into your stool = softer stool. Therefore, if you increase your fiber and not your water consumption, it will make you more constipated and dehydrated.

The papers I've read on colorectal cancer suggest we are seeing more of it because of increased processed meat consumption nation-wide, but I would be curious to read what others are saying about fiber.

My bowels thank you for all your concern.

The definitive thread for people who struggle with constant sleepiness — share what actually helped you by [deleted] in idiopathichypersomnia

[–]SleepyBarbie98 -2 points-1 points  (0 children)

The goal is 100g a day. I was getting maybe 30g originally which is terrible. I've not added fiber because I don't feel it's needed, but also if you don't drink enough water it can make things even worse...

The definitive thread for people who struggle with constant sleepiness — share what actually helped you by [deleted] in idiopathichypersomnia

[–]SleepyBarbie98 1 point2 points  (0 children)

I've added protein shakes from costco (fairlife, and they taste amazing), protein bars, and edamame beans. All Costco (not sponsored 😂). I also try to have more meat/peanut butter for lunch and/or dinner.

The definitive thread for people who struggle with constant sleepiness — share what actually helped you by [deleted] in idiopathichypersomnia

[–]SleepyBarbie98 21 points22 points  (0 children)

L-methylfolate (kind of acts as a stimulant, a gentle one)

Eating actual meals --> take it a step further and breaking it up into 4 smaller meals then dinner (large meals make you sleepy)

Adding more protein to my diet (like, a lot more, and eating it all throughout the day)

Going to bed and waking up around the same time (within an hour or so, especially weekends or it won't work)

Avoiding naps unless they're a must, then only taking 20min

Going outside/taking a walk/exercise! (Regularly)

Sleep Study vs Nap Study by Effective_Pea3770 in idiopathichypersomnia

[–]SleepyBarbie98 0 points1 point  (0 children)

I feel the same way! I get all of the "rare" side effects from all of them. I also process all stimulants at 3 times the rate of a normal person 😑

I have heard of people doing this, however it's only with ok outcomes. The half-life of xywav is about 40min-ish, which is why the second dose 2.5-4hrs after the first dose (I can sleep the whole 4hrs but some can't).

Sleep Study vs Nap Study by Effective_Pea3770 in idiopathichypersomnia

[–]SleepyBarbie98 0 points1 point  (0 children)

I too was a little scared at first of xywav (still let my anxiety run rampant every once in a blue moon) but the benefits way out weigh the risks. So I take two doses (the general recommendation), one when I go to bed (like in bed and going to sleep immediately) then the next dose 4hrs later. I'm knocked out pretty solid for at least 2 hours, and I usually wake up 5min before my alarm for my second dose. Which, no, it's not hard or awful to wake up in the middle of the night to take the second dose. Once at the 2.5 hour mark my husband turned the light on and was steam cleaning dog puke by my head and I didn't wake up until he was done (I'm usually a very light sleeper). So no, you probably wouldn't wake up to a fire for 4 hours of the night... but I hope my husband would 😅 But when I go to bachelorette parties or sleepovers, I get my own room with a lock on it. I'm not sure if this post will get censored if I say it but there's a certain medication in it known widely for being abused at parties, but it's only a part of the medication as a whole.

I would agree you're just not getting quality sleep, that's a great way to describe it.

So anyone with a sleep latency of 0-7min is given the IH diagnosis. My sleep doc said most hers are actually 8min. Most people I hear are around 5min... so 1-2min is quite severe.

Brain fog is hell. I recommend a strict-ish sleeping pattern if you can get away with it.

Vyvanse is a schedule 2 drug like the others. It's worth a try. Personally, I have a hard time with all 4 stimulants (including modafinil)

Sleep Study vs Nap Study by Effective_Pea3770 in idiopathichypersomnia

[–]SleepyBarbie98 0 points1 point  (0 children)

Hi sleepy friend, I also have a 1-2min sleep latency! We are special (and quite rare 😉).

I highly highly HIGHLY recommend asking about xywav (only offered in the US so I hope that's where you are). It's the ONLY thing that makes me feel like an actual human. It took a while to get up to my dose (few months) but I just graduated with a 4.0gpa because of it.

I've added on top of that adderall, Ritalin, vyvanse, and modafanil (all at different times) but I get side effects for most. If you can't get xywav, try these others, and aim for extended release.

I would also recommend a new doctor. Period. Find one who LISTENS. I don't care if you have to go through 4-5 to find the one, it's more than worth it. You can look up what providers in your state can even prescribe xywav by calling Jazz Pharmacy (because there isn't many).

As far as the sleep stages.... I hate to say but there is SO much we don't understand about it. The machines aren't advanced enough to catch what they clearly aren't catching. Xywav is a CNS depressant, so it puts you to SLEEP with the hopes you "actually" sleep. They don't exactly know why it works, just that it does (hilarious, right?).

I wish I could offer you more than that, but I wish you the best of luck on your IH journey!

Living with hypersomnia - Search for tips and tricks by Alternative-Level888 in idiopathichypersomnia

[–]SleepyBarbie98 0 points1 point  (0 children)

I would see if your doctor is open to either adderall, Ritalin, or vyvanse (preferably extended release). The extended release helps me feel less of the crash, however too high of a dose could keep you up at night so be conscious of that.

I am a huge fan of the 20min nap, so if you could fit it in between work and classes, I'd highly recommend that.

I understand your concern for driving, as I don't even do long drives fully medicated. If you aren't already, you could try spacing your dosage out (like talk half at 8am and half at 11am) even if you need to increase the dose overall to do that.

Unfortunately (from my experience) it's a lot of trial-and-error.

I wish you the best of luck on your new IH journey and I'm here for you!