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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?
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.
Xywav..I Have Taken Xyrem For Years W/no Problem, I'm 71. Any Benefit To Switching To This New Rx?
PS - I have taken Ritalin and Venlafaxine for years. Ready for a change!
Which Meds, Prescription Or Non, Have Worked The Best To Help Lessen The Sleepiness During The Day For You? Same Question, But Cateplexy?
GeorgeW.
Has Anyone Tried The Sodium Oxybate For Narcolepsy?
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!
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?
I have narcolepsy with cataplexy. I sleep like a baby, I wake up every 2 hours crying!😊
Most smart watches can be done that way now
Need Examples Of Medication Regimens
I took adderal for years, but felt like I was sleep deprived even though I was awake. I switched from a neurologist to a sleep specialist who took my off Adderall and put me on wakix. No change with that. We added xywav a couple months ago. I feel like my brain works better now (I felt like I was developing dementia before) but I am soooooo tired all day, all I want to do is sleep again and I'm back to sleeping 12+ hours a day. He didn't know if it was safe to add on stimulants, so I asked about… read more
Let me know what you think of Xzavier. I’m on modanifil. I hate it. Hard to regulate
New To Forum / Anybody Experience With A Drug Called Xyrem?
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
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?
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?
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.
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?
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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