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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" in Q&A. To see all results and access other features, sign up for free.

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

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

PS - I have taken Ritalin and Venlafaxine for years. Ready for a change!

Xyrem To Xywave

A MyNarcolepsyTeam Member asked a question 💭

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?

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A MyNarcolepsyTeam Member

I Also tried the Wakix not on a clinical trial and it did nothing for me. It was like I was not taking medication at all.

Has Anyone Tried The Sodium Oxybate For Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭

I struggle heavily with sleeping anxiety at night and my doctor is trying to get me it. Wondering if anyone can speak to their experience so I can gage an idea! Thanks!

A MyNarcolepsyTeam Member

I've been on lumryz about a month. Totally knocks me out and I get refreshing sleep. It's extended release oxybate so you only take one dose at night

Unfortunately my EDS and sleep attacks are too… read more

Is There A Wearable That Tracks Sleep That Can Set An Alarm And Wake You At The Optimal Time Of The Sleep Cycle?

A MyNarcolepsyTeam Member asked a question 💭

I have narcolepsy with cataplexy. I sleep like a baby, I wake up every 2 hours crying!😊

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A MyNarcolepsyTeam Member

Most smart watches can be done that way now

New To Forum / Anybody Experience With A Drug Called Xyrem?

A MyNarcolepsyTeam Member asked a question 💭

I was diagnosed with narcolepsy in 2006. My wife and I are expecting a baby so I once again saw a sleep specialist here in the US (I moved from Europe). They are suggesting a drug called Xyrem; can anybody share their experience with it?

For context: I have been taking other (not very helpful) medications for the past 10+ years. The doctor's description of Xyrem was a bit odd (e.g., having to wake up during the night to take a second dose?), so was curious to see if anybody has tried this and… read more

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A MyNarcolepsyTeam Member

Personally, I found it to be horrible. Sooooooo salty, hard to take and I found it weird to get up just to take another dose. I stopped using it.

How Long Can The Process Take To Get Started On Xywav?

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

The doctor takes care of the enrollment with the pharmacy I think the biggest part about waiting is getting the insurance authorization to cover it. Once approved I think a rep and a nurse or… read more

Has Anyone Tried CBD For Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭

Has anyone with narcolepsy had any luck with CBD reducing the effects and/or other positive results wih less dattime sleepiness?
Did you take it orally as an oil or in another form?

George W.

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CBD and Narcolepsy Read Article...
A MyNarcolepsyTeam Member

I’m fortunate, my daughter educates people that need assistance with insomnia. She educates people about CBD. I’m almost 70 yo and she convinced me to try to take the CBD gummy’s. I was hesitant at… read more

Advice?

A MyNarcolepsyTeam Member asked a question 💭

My boss called me in for a meeting today because i've been consistantly late. I just cannot get up in the morning. No matter how many alarms I set or how many automated things I set up I sleep through it. The only thing that gets me up is the sheer panic when I realize I overslept. Again. It's affecting my job performance and my self-esteem. I have an appointment with my sleep specialist this thursday but I'm not sure there is anything that can be done. I'm already on medication. I stay awake… read more

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A MyNarcolepsyTeam Member

Are you able to ask for ADA workplace accommodations? Check out the job accommodation network online for assistance with the process

Has Lumryz Been Approved Yet And Is Anyone Using It? This Is The One Dose Xyrem.

A MyNarcolepsyTeam Member asked a question 💭
A MyNarcolepsyTeam Member

i just take 2mg bars of xanax up to 4 times a day but usually two at night and it helps

My Doctor Ordered Pharmacogenetic Testing To See How I Genetically Metabolize Medications. Has Anyone Had This Benefit Them?

A MyNarcolepsyTeam Member asked a question 💭
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A MyNarcolepsyTeam Member

Switching meds has been beneficial for me in the past however my new Pulmonologist (sleep doctor) is unwilling to flip them so now waiting (still waiting) to try Xywav.?....