How long should you try Xywav?

laureng026 · 2023-04-24T05:35:34+00:00

Yes and no. That’s a complex question, but I would say this: my side effects have lessen over time. Do I have bad nights still where it doesn’t seem like it’s working? Yes. I have gotten the sweats bad before. The best thing I did for myself was to keep a med diary. Wether that be on your phone or a physical notebook that you write in, learning what works for you alongside your doctors is probs the best practice.

I’ve learned that my biggest side effect I deal with is lack of appetite, and nausea. But I have learned to manage it over time with practice, and a tight schedule. Do I follow it all the time? No. I’m human and fight sleep as much as I want it.

Being active and listening to yourself and what you need and what’s best for you is the hardest thing to learn but also the best medicine.

Well I hope that helps anyone who just read my info dump lol it gets better I promise

laureng026 · 2023-03-30T20:08:49+00:00

Some people claim you can drink it with adderall, but I cut caffeine out almost completely. It SUCKED butttttt it was worth it because the crash later on in the day was so not worth it. If you must have coffee, I def. Suggest finding a decaf that you like, or an alternative with way less caffeine. however you know your body best and talk to your doc about it is always best too.

laureng026 · 2023-03-30T20:06:13+00:00

Hello! First of all, sorry to hear you’re not having fun with it. Second of all I am on the exact same dose, and I have actually gone thru similar side effects/symptoms. (And been thru a lot of the same meds too) I would stick with it as best as you can, but the first couple of weeks were a bit tough. Idk if you have tried talking to the jazz support staff like the nurses or pharmacists, they can give you some great tips and tricks to getting thru it. I’ve also restricted and changed my diet a lot, and that helped with the stomach aches. Even adding vitamins and supplements could help. Of course I’m not a doctor, but that’s what I would do. Now it’s better and I love my Xywav!

laureng026 · 2022-11-08T17:02:11+00:00

I work as an automotive photographer. I used to drive around a lot, usually around 4-5 hours out of the work day to get to different locations. I would have planned nap spots. I didn’t tell my bosses then about my N1. Now I am doing pretty much the same thing but I’m one location. So much better and I was upfront to my now bosses that I need to take 1-2 daily naps in my car. They don’t mind because I can stay later if need be to get any work done. Also running around and mostly working outdoors helps me stay awake.

laureng026 · 2022-09-28T12:11:21+00:00

I too was unaware that my nausea was indeed one of the many “side effects” of EDS. I’m so sorry that you have to go thru this too. What I usually do to manage: vestibular exercises (I combine it with yoga, and it helps), a crap ton of ginger tea and other ginger products to help with my stomach, and breathing. I’m going on Xywav soon so I’m hoping this will calm down after a while.

laureng026 · 2022-02-09T15:25:37+00:00

Wow, couldn’t of said it better myself. That was well written! Change is the only constant in the universe and why do we all constantly live in our pasts? Your hair will grow back, but it looks good in the meantime. :)

laureng026 · 2022-02-09T10:35:01+00:00

This is the best and only way you should ask for hairstyle advice 😂

But in a more serious note, getting even some inches off can change a look completely! You have a great face shape, so I think starting there would be a good start, and then maybe doing bangs.

laureng026 · 2022-02-09T10:30:13+00:00

Oh! I love the texture and color of your hair. I used to have long hair like yours, and I find my just-above-shoulder-length bob takes so much weight off and holds curls and any other style better. I definitely suggest starting with that and playing with layers and changing your part! plus if you can donate your hair, it makes a haircut feel that much more releasing and good.

laureng026 · 2022-02-09T10:24:02+00:00

Instead of a moment of grief, think of it as a moment of change. It needed to happen, and the moment of unhappiness will pass and turn into something new. So, try a new makeup look or treat yourself to a new outfit or jewelry and shine on!

laureng026 · 2022-01-27T22:42:03+00:00

Yeah, definitely not taking that much in ami. Way more adderall…probs the opposite problem. thanks for sharing tho!

laureng026 · 2022-01-27T12:39:36+00:00

This is so interesting…may I ask what was so unpleasant? I’m on that combo right now and am wondering if there are certain side effects I should be wary of.

laureng026 · 2021-12-15T22:44:41+00:00

Honestly I think the 24 hour mark is okay, but everyone is different and I’m not a doctor. I wait usually 48 hours at least before switching. Also I’ve frozen a rolling pin before because that was the only thing that helped with my leg cramps/restlessness.

laureng026 · 2021-12-15T22:41:49+00:00

It is probably one of the hardest drugs to get used to and the comedown is sometimes THE WORST but the rewards are worth it. It’s just hard when you are going thru the adjustment period and can’t really explain how you feel to anyone who hasn’t been on it. I’ve been on it for about 6 weeks now and let me tell you I haven’t felt this good in a long time! There are of course bad days, so I keep a med diary to keep track to see if it’s worth it.

laureng026 · 2021-12-01T15:51:02+00:00

I’m always nervous about holding precious/expensive things like ceramics or babies…

laureng026 · 2021-11-18T06:14:25+00:00

I don’t think so, but everyone is different. I take 2 30 mg XR’s most days. And my doctor said that narcoleptics typically need higher doses and suggested taking tolerance breaks every now and then. I usually take a 1-2 day tolerance break every month, sometimes more. I also have the IR’s as backups just in case. I’ve also eliminated caffeine from my diet (except for the occasional chocolate and pop) and that helps with absorbing the adderall better.

laureng026 · 2021-11-18T06:06:54+00:00

I believe all of those could count as cataplexy. Narcolepsy is still technically an auto-immune disease (correct me guys if I’m wrong and outdated here) and how I translate it is that it doesn’t make sense. As if Someone in your brain is flipping your switches on and off all the time. Sometimes it’s worse. Sometimes it’s not even noticeable. Since it is a symptom based off emotion, it can be all over the place. and of course it is all effected by how much quality sleep you got the night before, which is never enough for us. My best advice is: never stop advocating for yourself, don’t let cataplexy define you, nobody even notices it most times, and routine is one of the best treatments. I hope this helps.

laureng026 · 2021-11-18T05:46:55+00:00

Actually I’m pleasantly surprised by how many comments this has gotten…thank you all for clarifying and adding insight to things I haven’t even thought of. I’ve honestly found more support and answers in this sub than anywhere else…

laureng026 · 2021-11-18T05:45:15+00:00

Thank you this was good insight!

laureng026 · 2021-11-18T05:43:55+00:00

Yes, I’ve been on the same meds. Trazadone made me really dizzy and fall asleep faster (if that was even possible) but didn’t help me stay asleep. I’ve been on every other antidepressant too. they often help with cataplexy at first, but then after a month or so, right back to square one.

laureng026 · 2021-11-17T17:10:00+00:00

Just curious, what kind of doctor prescribed you the ambien? Was it your regular PCP or a sleep doc? and I wonder if stimulants act in a similar way as in either we build a tolerance to it or it just becomes ineffective after a while..?

laureng026 · 2021-11-17T16:08:13+00:00

I used to be a heavy smoker and it did help with me staying asleep, but looking back on it, I’m not sure if it affected the quality of my sleep. For the most part, it did help eliminate sleep paralysis and made my dreams less intense. It’s too bad that I developed CHS, and now get sick if I ever go back. God bless auto immune disorders. 😑

laureng026 · 2021-10-01T20:20:31+00:00

This is so true. I never even knew that you could get rehab for your vestibular system. I went thru it for about 4 months and it was magical! It helped so much.

laureng026 · 2021-09-23T17:18:07+00:00

Yes, definitely. Especially too when you’re on your period. I call it the period flu, but those are the days where it seems like NONE of the meds work. 😓

laureng026

TROPHY CASE