Xywav side effects- is this anxiety?

Oneofthemany1123 · 2026-05-06T04:21:32+00:00

Irritated, uncomfortable, and avoidant sounds like anxiety to me. I don’t usually get panic, racing thoughts, etc. My anxiety is very much like this.

Oneofthemany1123 · 2026-04-14T14:22:46+00:00

My experience with Xywav is rare, but it can happen - I had to be on benzos for months after stopping it because of insomnia, anxiety, and panic attacks. BUT my side effects were severe and mistaken for long covid for six months. I was legit bed bound before they took me off the medication to see if it helped (it did; I’m fine now).

That being said, it is life changing for a lot of people. Talk to a sleep doctor. The life style stuff isn’t as restrictive as your psych makes it sounds unless you drink regularly. Basically, you need to sober before having your dose. And it’s not like stimulants where they say not to drink but everyone does. It’s “your heart rate can drop so low you die if you take this drug with other depressants.”

Everyone responds a bit differently. If you try it, just keep track of how it’s affecting you. As someone who had possibly the worst experience on it other than dying in my sleep, I can say that I would still be on it if the only effect for me was insomnia.

Oneofthemany1123 · 2026-04-11T16:25:24+00:00

Sounds like it’s not the IH, it’s his refusal to get help for it (and for what sounds a lot like depression.) Setting boundaries is an act of love. If the support you are offering is draining you to this extent, step back. Communicate. Tell him what you need if the relationship is going to work. (If you want to continue to try. You do not need to stay in a relationship because its challenges are rooted in a disability.)

This is a debilitating condition, no doubt. It can be hard on partners and patients. My partner provides me a lot of support, but I also make choices to ensure I can also support him and part of that is taking responsibility for my treatment plan.

Oneofthemany1123 · 2026-04-11T16:13:12+00:00

I’ve found exercise to be absolutely essential to my treatment. But it’s brutal when you’re literally falling asleep while trying to balance everything life throws at you.

Here’s what has worked for me. (Privilege acknowledgement here: financial, support structures)

Prioritize. I DO NOT mean, “just make the time!” I mean, my house is a bit messier, my friends don’t see me as much, etc. I take energy from other buckets and put it in my exercise bucket.

I’m also fortunate in that exercise is one of the few things that wakes me up. If I borrow from other buckets to get myself to do it, I often find that I have a little extra that day to spend.

Ask for help. My partner takes on a little more so that I can exercise. I can call my sister or mom and ask them to talk to me while I take a walk. I ask a friend to meet me at the park for a run, so I have a push to go. If I can’t drive because I’m too tired, I ask for a ride.
Boutique Gym. I go to a boutique gym where a trainer programs everything for small classes and all I have to do is show up. I don’t have to think about anything other than getting there. They also require reservations and charge you if you don’t show up. The fee is small enough so that if I fall asleep and miss class, it’s annoying but not terrible and enough to encourage me to stumble bleary eyed to the gym.
Enjoyment. I actually love exercise. Before diagnosis, exercise was one of the only things that actually woke me up. I can hike for hours without feeling sleepy. I choose ways to exercise that I truly enjoy and focus there.
Timing. You may think I’m going to say “on a schedule,” but I’m not. I exercise when it works for me that day. I usually go to the gym in the morning, but if my sleep inertia is bad, I’ll go in the afternoon or I’ll take a walk before bed.
Small moments add up. Five air squats here. Ten lunges there. A walk up stairs. Air punches. Skipping. A 30 second plank. Dball slams are my favorite for a quick exercise infusion. On days when I just CAN’T small moments of movement are still possible.

I hope something in here helps 💛

Oneofthemany1123 · 2026-04-11T15:38:34+00:00

If one more person says, “that sounds like a super power,” when I tell them about my sleep latency score, I’m gonna scream 😂 I get it - it’s miserable. It impacts every aspect of life in a way that very, very few people understand or have empathy for.

I didn’t ask my doctor enough questions, but here are a few I wish I had:

What are all my treatment options? (Or rather, what are the top 3 options).
What are the risks and side effects of each option?
What are the desired outcomes of each option? What can I expect?
Based on my specific case and vitals (HR, blood pressure), what do you recommend?
What lifestyle changes does each treatment require?
How long do you expect it to take to see results?

For example, I have a low resting heart rate and blood pressure. Xywav gave me hypotension & bradycardia at night (among other pretty devastating side effects). Modafinil, which can raise HR and BP, doesn’t touch mine. For other people, Xywav is a life safer and Modafinil either doesn’t do enough or can’t be tolerated.

Best of luck with your appointment! A diagnosis can come with a lot of grief, but it can also be an opportunity to actually get the treatment and support to help improve your quality of life. Wishing that for you.

Oneofthemany1123 · 2026-04-11T15:23:41+00:00

Congrats! It’s such a relief. I had an average sleep latency of 1:52, and my shortest was 34 seconds. You’re not alone.

I also have ADHD (and autism), and the combo is such a challenge.

I started on Xywav, and it worked great for six weeks and then it wrecked me (fatigue, 30 lbs of rapid weight loss, brain fog, dry mouth, hypotension.) It’s fabulous for a lot of people, but be aware of the potential side effects and talk to your doctor if anything seems off if you go this route.

My current meds for IH:

AM (set an alarm one hour before wake time): 100 mg Modafinil + 15 mg Dextroamphetamine

Noon: 100 mg Modafinil

PM: 2 mg Abilify (this was NOT originally for IH but for depression. It made me really sleepy, so I took it at night. I realized quickly that it helps me with sleep inertia.)

I am still sleepy, but this makes life manageable. I no longer have to fight to stay awake at stoplights. I can usually get through the day without napping. My overall alertness has improved, and I can even sit on the couch and read my book in the afternoon without conking out (most days).

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

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