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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Top 10 Search Results for "Xywav"

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Xywav..I Have Taken Xyrem For Years W/no Problem, I'm 71. Any Benefit To Switching To This New Rx?

Xywav..I Have Taken Xyrem For Years W/no Problem, I'm 71. Any Benefit To Switching To This New Rx?

A MyNarcolepsyTeam Member

I'm 68 and I took Xyrem from when it was approved in July 2002 until Xywav became available in July 2020. The high sodium in Xyrem raised my BP, so I had to start taking a beta blocker to counter… read more

Xyrem To Xywave

Xyrem To Xywave

Has anyone changed from xyrem to xywave? What is your experience with either of them? Both have changed the taste, and what foods I eat, has that happened to you?

A MyNarcolepsyTeam Member

My sleep doc is big into clinical trials, so I've been in a few. I was in the one for Xyrem, in 2000, I think. (It was approved in July 2002.) When you're in a clinical trial, if the drug is finally… read more

Has Anybody Had Better Results With WAKIX Vs. Combination Of SUNOSI And XYWAV?

Has Anybody Had Better Results With WAKIX Vs. Combination Of SUNOSI And XYWAV?

I am currently taking SUNOSI during the day and tried to switch to WAKIX because of my cataplexy and sleep paralysis. My insurance would not approve WAKIX until I tried XYWAV so I started XYWAV. I find it almost ridiculous that XYWAV is twice nightly dosing! My anxiety is worse and affecting my overall sleep because half the time I can't get that second dose accomplished between 1-2 am.

A MyNarcolepsyTeam Member

I know the feeling but xywav changed my life completely!! That being said I created an automated system to make sure I took my second dose, basically it starts the timer as soon as I take the first… read more

What Experiences Do You Guys Have With Xyrem... Does It Work?

What Experiences Do You Guys Have With Xyrem... Does It Work?

My doctor is going to start me on Skyrem (Xyrem with less sodium) and I was wondering what people's experiences are with it. Does it work well? Does it cause any negative side effects? Do you still need to take other meds to fight day time sleepiness?

A MyNarcolepsyTeam Member

I take Xyrem and it has really helped me get the life I never thought I could have. Just be careful with it and feel free to call the distributors for any questions! They're super nice!

Does Anyone Sleep Over 13 Hours? Sleep Or No Sleep Has No Winner For Narcolepsy!

Does Anyone Sleep Over 13 Hours? Sleep Or No Sleep Has No Winner For Narcolepsy!

Since diagnosed with Narcolepsy with cataplexy in 2018, I would sleep for a total of 16-18 hours over the weekend just to get rested up for the upcoming week. Now I've been sleeping approximately 10 hours if I had a day off. I still find myself dragging myself out of bed just to eat and try to be a human for a day. Does anyone hold a extensive amount of hours sleeping after working full time, raising kids and trying to just make it through the week?

A MyNarcolepsyTeam Member

@A MyNarcolepsyTeam Member you are 100% correct. The only meds that actually work for me is the Adderall X R
Modfaninil 200mg and Fluoxentine. My pulmonologist introduced me to xywav and xyrem but I… read more

How Did You Go About Asking Your Doctor For Different Or Added Medication?

How Did You Go About Asking Your Doctor For Different Or Added Medication?

Second paragraph explains my situation a bit more but my question is this - I see so many people on here and other sources and support groups that are on a regimen including multiple meds. I feel so guilty for even asking and it's dismissed, like all I am to them is an addict in their eyes. I don't want to doctor shop at all and I know it's trial and error finding one that gets it... is this a sign I may need a new provider? If not, how do I get the doctor to understand the actuality of it all… read more

A MyNarcolepsyTeam Member

My doctor and I speak regularly. I was original on Ritalin. I moved and the new Dr, not endorsing Ritalin, put me on Adderal and Modafinil. They are working well. But we talk regularly. You should not… read more

My Doc Said There Is A Medication (name?) Distibuted From A Central Location (highly Controlled). Anybody Know Anything About It?

My Doc Said There Is A Medication (name?) Distibuted From A Central Location (highly Controlled). Anybody Know Anything About It?

I currently take Modofinal. Some times it works very well and sometimes I am not sure. When discussing this with my doctor, he asked me if I wanted to try the above (he told me the name but I can't remember it). He thought it might be helpful for me. Only one place that it is filled and sent out from?, that sounds a little scary to me. I have been thinking about it because I am tired of falling asleep all the time. It is embarrassing. I have been tinkering with the timing of the two to… read more

A MyNarcolepsyTeam Member

@A MyNarcolepsyTeam Member I feel your pain. Same here. Dexadrine (speed) doesn't work well for me. Could take 40mg and a nap. Just started Vyvanse at it is amazing. In fact I need the Xyrem to… read more

Has Anyone Else Heard About This?

Has Anyone Else Heard About This?

Looks like a new, timed-release version of Xyrem/Xywav might be available soon that will eliminate having to wake up and take a second dose.

https://investors.avadel.com/news-releases/news...

A MyNarcolepsyTeam Member

MichaelYJ did your 2nd dose get you to sleep? Do you eat your dinner hours before you go to bed?

Just curious if your stomach is full, you will have slow absorption. If your last meal was finished… read more

Does Anyone Have Less Severe Cataplexy And Could Explain What It Is Like?

Does Anyone Have Less Severe Cataplexy And Could Explain What It Is Like?

I have read into cataplexy and there seem to be more major attacks (falling over and things like that) and more minor attacks (drooping of the face was mentioned). If anyone has the more minor attacks, would you mind trying to describe what it is like? I tried looking on the internet but there is nothing from an actual person with cataplexy's point of view.

The reason I'm asking: I tend to worry about things so it could definitely be my imagination but I have noticed when I find something… read more

A MyNarcolepsyTeam Member

Yes Lucia
Mine also triggers if I'm angry, laughing any kind of excitement. My daughter has given me a breathing exercise to do when they occur. Inhale, count to 10, then exhale. Usually works for… read more