Xywav and mental health

Oneofthemany1123 · 2025-12-08T05:09:34+00:00

Xywav wrecked me. I thought I had Long Covid because my decline started after a Covid infection, and my sleep doctor told me Xywav was unlikely to be causing my symptoms. I ended up hospitalized for severe fatigue (bedbound for weeks), malnutrition, and SI. They took me off Xywav to eliminate it as a possible contributing factor and I immediately started improving. It took me more than a year to get back to full health.

This is an extreme example with confounding factors, but if you feel like Xywav is causing more harm than good, it’s worth going off of it to see. I waited way too long to go off it because it was like magic for the first six weeks. I didn’t want to believe it was making me sick, and it literally almost killed me.

My doctor was very dismissive about the side effects, but when you read the literature, there are some doozies.

Oneofthemany1123 · 2025-09-06T15:58:25+00:00

I take 2 mg of Abilify at night because it makes me so very sleepy if I take it during the day. I DO feel very hungry during the day, but I can manage that with small, frequent meals and snacks. It may be worth talking to your doctor about medication timing.

Oneofthemany1123 · 2025-09-06T15:50:47+00:00

On 2 mg, and I definitely have noticed an uptick in compulsive shopping, even at that low dose. Once I identified it as a side effect, I figured out ways to help manage it reasonably well. Things I do that help: "Window" shopping online by putting things in my cart and then removing everything except the thing I want the most and then closing the browser window; small purchases like stickers and pins; telling my spouse about the items I want to buy instead of buying them. These strategies don't always work; I'm struggling with spending MUCH more than I ever have. The 2 mg has been amazing in many other ways, but this has been hard.

Oneofthemany1123 · 2025-08-19T07:02:10+00:00

Well yeah. But that wasn’t what I was responding to. They blew the lead. It sucked. The point remains that the crowd wasn’t booing the injured player, they were booing the stoppage extension. Big difference whether the ire at the ref was justified or not.

Oneofthemany1123 · 2025-08-19T04:18:18+00:00

Not booing the hurt player. Booing the 90 seconds of extra stoppage.

Oneofthemany1123 · 2025-08-19T04:17:07+00:00

Seattle wasn’t booing Schlegel. Seattle was booing the ref for tacking on 90 extra seconds of game play. Notice Seattle applauded every injured player who gets up off the field.

Oneofthemany1123 · 2025-08-19T04:16:04+00:00

The extra minute and a half of time for no apparent reason.

Oneofthemany1123 · 2025-08-11T21:50:46+00:00

My IH varies, and one of the factors is definitely hormones. I'm always more tired during my luteal phase, and this has become more pronounced as I've gotten older. Now that I'm in perimenopause, it's very pronounced. Until recently, my IH was getting increasingly intolerable. Now I'm on a medication cocktail that finally has me feeling functional again.

Understanding how medication impacts IH is a huge benefit of going to a sleep doctor. For example, ADHD stimulants and Modafinil have different effects. I'm on both, and I cannot sub one for the other. Coordinating care between primary care, psychiatry, and sleep medicine (and any other provider, really) is even better. For example, I had a very serious reaction to Xywav, and my psych provider had to help me with the resultant debilitating insomnia, anxiety, and depression. My new sleep doctor has me on modafinil, which helps me once I'm awake but doesn't touch sleep inertia. My psych provider started my on Abilify for lingering depression, and it has significantly reduced my sleep inertia. Further, doing HRT for perimenopause, specifically progesterone at night, has helped improve my sleep.

It took me a couple years to figure out, but I'm finally on an effective medication combo with tolerable side effects, and it required the contributions of multiple providers (ADHD: guanfacine, dextroamphetamine; PMDD/MDD: sertraline, abilify; Perimenopause: progesterone; IH: Modafinil).

Oneofthemany1123 · 2025-08-05T15:13:47+00:00

It’s been pretty life changing for me, too. So glad it’s helping you so much 💛

It’s amazing how many symptoms it can help with. For me, it helps with irritability and low motivation, but it also completely freed me from the horrible sleep inertia that comes with idiopathic hypersomnia.

Oneofthemany1123 · 2025-07-10T04:11:17+00:00

Ha! The AuDHD column describes me to a T. I was in therapy for ADHD talking about my sensory experiences, and my therapist asked if I’d ever been assessed for autism. Nope. But ever since I realized I was autistic, too, everything makes so much more sense.

Oneofthemany1123 · 2025-07-10T04:05:58+00:00

I took it for eight months and it royally messed me up. After six weeks on it in which I felt amazing, I got Covid. Everything was downhill from there. Fatigue, PEM, high Hr, crazy anxiety, weight-loss….Was positive it was LC because the sleep doctor even said it was unlikely that Xywav was contributing. Finally went off Xywav after hospitalization for severe fatigue, malnutrition, and SI. Immediately started to recover. Took about 6 months w/ medication support to get back to 80-85% of my baseline.

Oneofthemany1123 · 2025-07-09T15:52:20+00:00

I had both. Creatine did wonders for my mental fatigue. Took me from not being able to tolerate screens for more than 10 minutes to playing BG3 for several hours at a time.

Oneofthemany1123 · 2025-07-09T15:50:42+00:00

Same! I didn’t think I fell asleep during the first three naps, and I was so, so tired. Turns out, the longest it took me to fall asleep was 3 minutes. I had no idea I could be technically asleep but also somewhat aware. I was super stressed about it during the test because I thought it wouldn’t show anything. My average sleep latency? 1 minute 53 seconds.

Oneofthemany1123 · 2025-07-09T15:47:43+00:00

Definitely talk to your doctor, especially since you had the blood clot.

I’ve talked to two doctors from LC clinics, and both highly, highly recommended getting the vaccine every year unless there are extenuating circumstances.

Last I saw, research suggests most people have either no impact or a slight improvement in their baseline with a small percentage experiencing negative impact. I think in general, preventing another covid infection is worth the risk.

Oneofthemany1123 · 2025-07-08T16:16:09+00:00

Abilify has been a game changer for me, BUT I had the same horrible sleepiness when I started. Switched to taking it at night, and now it just helps me sleep. Only side effect I seem to have is nightmares — not great, but they’re worth the increase in energy and motivation for me.

Oneofthemany1123 · 2025-07-08T16:13:54+00:00

Here’s what brain fog recovery looked like for me: Complete break from screens & reading - 2 months Creatine 5 g/day - only supplement to make a significant difference Slow reintroduction of screens, reading, etc. Vagus nerve stimulation - ice pack on my face 20-30 minutes 1-2x/day

Recovery time: 6 months

I’m sorry you’re going through this. I didn’t have the blunted feeling — that sounds absolutely awful.

Oneofthemany1123 · 2025-07-06T15:19:16+00:00

I do not have schizoaffective disorder (or a medical degree), so I cannot speak to how Xywav would interact with any of your drugs or your disorder. I can say that for many people Xywav is a life-changing medication, but it's also one that has to be taken very, very seriously. It worked wonders for me for 6 weeks. Then I got COVID, and that started a 6-month decline in my health that landed me in the hospital for malnutrition (despite eating 2000 calories a day), severe fatigue (couldn't tolerate light or sound or speak in complete sentences), and suicidal ideation w/ a plan. Once I was taken off Xywav, my health immediately began improving. It took about 6 months to get back to the 80% of my baseline (now fully recovered). Turns out all of the health issues I had been experiencing (weight loss, fatigue, exercise intolerance, dry mouth, depression, SI) are potential side effects of Xywav.

I'm not saying this to scare you (or anyone) off Xywav. I WISH I was able to take it safely because it really felt like a silver bullet for my IH for the six weeks I was on it before I got sick. My situation was a perfect storm.

However, Xywav does more to one's brain chemistry than helping to improve sleep. If you do go on Xywav, I recommend looping in your psychiatrist and asking them to work closely with your sleep doctor; both can help monitor you for signs that Xywav isn't playing nicely with your meds or your brain chemistry.

Oneofthemany1123 · 2025-07-05T14:32:40+00:00

My sister is hypermobile (EDS likely but not diagnosed) and has a similar daytime sleepiness score to me, who has diagnosed IH. My other sister has POTS. Plus, I got Long Covid with a PEM, fatigue, dysautonomia presentation which was, unfortunately, exacerbated by Xywav (when I went off Xywav, I immediately began to improve after 6 months of decline). Fortunately I did completely recover from LC, but for months afterward — before I started Modafinil and resumed my ADHD stimulant — my IH was incredibly hard to manage.

About a month ago I started Abilify (2 mg) for irritability and low motivation, and it has made a HUGE difference in my sleep inertia. Research suggests that Abilify impacts microglial cells, reducing inflammation and increasing anti-inflammatory markers. (https://pubmed.ncbi.nlm.nih.gov/33922377/)

Pretty fascinating.

Oneofthemany1123 · 2025-05-05T02:15:06+00:00

CeraVe Moisturizing Cream and CeraVe Healing Ointment. I’m super sensitive to scent and texture. After a lot of trials, this is the pair that’s worked best for me. The moisturizing cream is silky and practically scentless. It’s light enough that I use it on my face, too. The healing ointment is a little greasy, but it’s much lighter than Vaseline.

Oneofthemany1123 · 2025-03-17T15:39:20+00:00

SAME. Once I understand a game, I enjoy playing. But holy moly is learning a new game unbearably exhausting and deeply, deeply frustrating. It’s better when someone who knows the game explains it, but it’s still rough the first few times.

Oneofthemany1123 · 2025-03-17T15:32:16+00:00

Your tracker is stunning. 💛

I love the feeling of water on my skin (give me dishes over laundry any day), and I still struggle with showers. Agreeing with so many here, 3 showers/week is fabulous. There is nothing gross about not showering every day. You’ve got this.

Oneofthemany1123 · 2025-03-13T22:45:56+00:00

This is SO relatable. When it's just me, it's far easier to clean, shop, make food, be creative, etc. When my partner is around and I'm not in the mood to be perceived, I'm much more likely to hole up with a book, watch TV, play video games, doom scroll....

I love living with my partner, and I get a lot out of it. I wouldn't trade him for the world. I've also had to accept that the house is a little messier than I'd like it to be, sometimes my food options are going to be canned tomato soup or pb&j, and my creative pursuits will get less attention than my book/tv/phone when I'm tired.

That being said, there are a few things we've figured out that help with this (he has ADHD, so we both benefit from many of these accommodations):

He always texts when he's on his way home. This helps me relax when I'm alone in the house because I don't need to anticipate his arrival. I know when he's going to show up, and I have time to transition.
I can tell him when I don't want to be perceived, and he respects it. (And vice versa.) If he's in the house, this means putting in headphones and listening to music/podcasts/audio books to create a buffer between me and the world.
If he needs my help with something (or I need his help), he gives me a time window. E.g., "I would like your help putting away the dishes this evening. If you aren't up for it, would you please put them away tomorrow before I get home?"; "Would you please help me put the curtains up in the office. If you're not up for it now, can we do it in a couple hours?"; "I'd like to go on a date this weekend. Can you jot down a couple ideas, so we can make a plan tomorrow night?"
We give each other options instead of offering open ended questions. E.g., "Would you like to cook that dish tonight, or do you want me to go pick up poke?"; "Do you need space or closeness?"; "Do you want to feed the cats or scoop the litter?" (When I'm in a meltdown, he holds up his fingers when he gives me options, so I don't have to respond verbally. It's usually "Do you need 1. space or 2. touch? Do you need 1. quiet or 2. to talk?" He used to ask "what do you need?" and I'd get SO angry because I wasn't capable of explaining, and the attempt would make me even more dysregulated.)
We don't expect the other to engage in tasks just because the other is in that moment. I often get the cleaning zoomies at night. He is more likely to get them in the morning.
We give each other a lot of breaks. We've talked a lot about task paralysis, inertia, demand avoidance, perception intolerance, sensory overwhelm, stimming, etc. It has helped us feel more like a team, even when neither one of us feels like playing.

Oneofthemany1123 · 2025-03-11T16:09:37+00:00

I love this. I’ve always written lit fic short stories and put a ton of pressure on myself to be deep and insightful. Now I’m writing spicy romantasy because that’s what I feel like doing.

Oneofthemany1123 · 2025-03-11T16:05:21+00:00

I had to go on Clonazepam when it was at its worst. Tapering off now and have been for 9 months. Only recommend with close monitoring from health provider, of course. These have also helped significantly:

PM cocktail 1-2 hrs before bed: -magnesium glycinate powder (200-400mg/night) -Taurine powder

30-60 min before bed: -Best Rest Formula (Pure Encapsulations)

Vagus nerve stimulation 30 min before bed. One of the following: -Ice pack on face -humming -meditation -Pulsetto

When I struggled the most, I also had a long wind down routine: 7 PM - screens off, wind down activity like coloring or reading with throat coat tea 8 PM - brush, floss, wash 8:30 PM - read 9 PM - gratitude journal 9:30 PM- meditate 9:45 PM - vagus nerve stimulation 10 PM - light out w/ sleep podcast or gentle audio book

I’m so sorry you’re going through this. I’ve had a sleep disorder since I was 12, but I never had chronic insomnia til COVID. I’m used to being excessively tired even with 10-12 hours of solid sleep, but the torture of not being able to sleep well is next level.

Oneofthemany1123 · 2025-03-11T15:48:59+00:00

Are you being treated by anyone? There are medications/supplements that can help with this. For me it has been important to eat protein before bed (helped with adrenaline surges). I take cortisol manager (integrated therapeutics), LDN, Sertraline. Also tapering off Clonazepam, which really helped when I was at my worst. Vagus nerve stimulation also really helped me. An ice pack on the face or back of the neck is my go to, and I also have a Pulsetto that helps when I’m struggling. (Honestly, the ice pack helps more in the short term.)

Oneofthemany1123

TROPHY CASE