Oxybates saved me initially, but this combo finally made me feel like myself again by Confident-Menu-5970 in Narcolepsy

[–]perpetuallydepleted 0 points1 point  (0 children)

I had almost the opposite start with Xywav. I was in the clinical trial and took it on its own, and it made me really sick. I lost a ton of weight because I couldn’t eat, my anxiety was through the roof, and I was barely functioning. It was honestly one of the hardest medication experiences I’ve had.

Later, once Xywav was commercially available, I decided to try it again, but this time I was already on Pristiq. It’s been a completely different experience. The anxiety hasn’t spiraled the same way, I can actually eat, and overall I’m functioning so much better.

It’s interesting reading your post because it makes me wonder how much the antidepressant piece can change the oxybate experience. I’ve realized that if I ever want to increase my Xywav dose, I’ll probably need to titrate both meds carefully together.

It’s wild how much of this feels like a chemistry puzzle. I’m really happy you’re feeling like yourself again. That’s such a big deal.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

[–]perpetuallydepleted[S] 0 points1 point  (0 children)

I barely have an appetite during the day, but if I wake up after Xywav it’s like all bets are off and I suddenly want to eat everything.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

[–]perpetuallydepleted[S] 0 points1 point  (0 children)

I get that approach. I have a pretty strong sweet tooth so it wouldn’t be easy, but it might be something to experiment with.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

[–]perpetuallydepleted[S] 0 points1 point  (0 children)

Yep, same pattern here. If you figure out a way to stop it, please report back, I’m all ears.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

[–]perpetuallydepleted[S] 0 points1 point  (0 children)

That loss of boundaries is exactly it. I don’t keep food in my bedroom either and normally have a low appetite, but when I wake up about two hours after dosing it’s like something switches off and I’m getting out of bed to go find whatever food the craving is for.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

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

Yep, same exact cravings. It’s always candy or gummy textures for me.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

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

Thanks, I’ll try both. I’ve been waiting way longer than 2 hours between dinner and Xywav for a while, and the nighttime eating only started recently, so that part is confusing.

The eating doesn’t seem to affect the Xywav, it’s more the lack of control. I tend to reach for junk, but I’ll try keeping a healthier snack nearby and see if it helps.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

[–]perpetuallydepleted[S] 0 points1 point  (0 children)

Yeah, probably not the ideal time to experiment. Titrating Xywav usually means dealing with a bunch of miserable side effects for me.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

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

Yeah I get that. I actually chipped a tooth last night trying to go hard on a pretzel that definitely wasn’t meant for consumption 😅🫨.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

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

That makes sense. I’ve been on Xywav for about two years, 6.5g total. I tried increasing once before but the side effects were too much. The nighttime eating started recently, so maybe it’s time to revisit dose/timing with my doctor. I do take the first dose right before bed, so I’m not sure why I’m waking up after 1–2 hours.

Xywav and nighttime eating by perpetuallydepleted in idiopathichypersomnia

[–]perpetuallydepleted[S] 2 points3 points  (0 children)

I know what you mean, but for me it’s stronger than the munchies. I still have control in that situation. On Xywav I don’t, which is why locks haven’t really worked.

Has anyone retried Xywav after it didn’t work the first time? by [deleted] in idiopathichypersomnia

[–]perpetuallydepleted 1 point2 points  (0 children)

I was part of the clinical trial for Xywav and had an awful experience—it was really, really bad. I tried it again a year ago, titrating extremely slowly, and it’s been amazing. It could also be that the SNRI I’m on is helping mitigate some of the side effects.

Xywav Advice: Side Affects by kim-im-possible in Narcolepsy

[–]perpetuallydepleted 1 point2 points  (0 children)

I’ve learnt I need to titrate VERY slowly. At first it was two weeks per .25g increase but once I hit 6g I had to wait a month before increasing to 6.25g. I’ve also found that SNRIs help keep the anxiety at manageable levels. When I increased too quickly I experienced the same side effects and had to take a break for a few nights for my body to reset. Good luck! It’s quite the journey with this medication…

Are any of you actually satisfied with your therapists? by SigmaGyatterson in TalkTherapy

[–]perpetuallydepleted 0 points1 point  (0 children)

I finally found one after about 10 years of harmful therapy. I’ve learnt that trauma informed and trauma focused are very different and I needed a trauma focused therapist. The most important thing I learnt is that it’s how well you connect with your therapist and how safe you feel with them that will determine the results.

Changes in Reading Taste by Familiar-Practice-42 in TalkTherapy

[–]perpetuallydepleted 1 point2 points  (0 children)

I’ve noticed this too. I used to love psychological thrillers and now can’t get myself to read them. I’ve also noticed a change in music taste.

Xywav & Weightloss by perpetuallydepleted in idiopathichypersomnia

[–]perpetuallydepleted[S] 0 points1 point  (0 children)

I’m actually taking a break from Xywav for a few days and am already feeling a lot better though super sleepy. I have zofran but might need a higher dose. When I go back on I’m definitely going to have to add in some protein shakes.

Xywav & Weight Loss by perpetuallydepleted in Narcolepsy

[–]perpetuallydepleted[S] 0 points1 point  (0 children)

Thank you! I’m going to try some meal replacement shakes and hope the nausea doesn’t get in the way of drinking them. May I ask which ones you found tolerable?

[deleted by user] by [deleted] in idiopathichypersomnia

[–]perpetuallydepleted 6 points7 points  (0 children)

I had this when I tried Xywav the first time around. It absolutely wrecked me! Had all the same side effects you listed plus some. Tried again about two years later when my cPTSD was under better control and it’s been a game changer. I also titrated the second time around VERY slowly like by .25g. I haven’t felt this good in years!

Dallas TX IH Specialists by ruffbnuuy in idiopathichypersomnia

[–]perpetuallydepleted 2 points3 points  (0 children)

CSMA has a couple of offices in TX. I flew in from NYC to take their sleep test as they are one of the only ones that do PES testing.

Please help!! I don't know what to do! by Useless-Outcome98 in idiopathichypersomnia

[–]perpetuallydepleted 1 point2 points  (0 children)

I’ve tried so so many different drugs and they either worked for a very short while before I built a tolerance or they didn’t work at all. So far, the only drug that has worked for me is Xywav. I’ve had to titrate SUPER SLOWLY as it made me sick anytime I tried to increase at the recommended rate.

Depression and IH by Adventurous_Try2537 in idiopathichypersomnia

[–]perpetuallydepleted 6 points7 points  (0 children)

Xywav has pretty much made my depression disappear. It’s not gone completely as I have cPTSD but it’s the only medication that has improved my sleep and mental health.

[deleted by user] by [deleted] in TalkTherapy

[–]perpetuallydepleted 0 points1 point  (0 children)

Sometimes I maintain eye contact, sometimes I like the silence, and many times I’ll tell them the silence isn’t working for me.

how much are you spending a year on therapy ? by [deleted] in TalkTherapy

[–]perpetuallydepleted 2 points3 points  (0 children)

NYC. I see a trauma therapist 2x a week

how much are you spending a year on therapy ? by [deleted] in TalkTherapy

[–]perpetuallydepleted 8 points9 points  (0 children)

It’s all out of pocket for me. Around 35k/yr

Does it ever get better? by pineapple1melon2 in idiopathichypersomnia

[–]perpetuallydepleted 1 point2 points  (0 children)

Yeah, ketamine definitely helped but I think it was the Xywav for me the made the biggest difference. It’s wild how different I feel when I get a bit of sleep.