This topic contains 6 replies, has 5 voices, and was last updated by WV_narcoleptic 3 months ago. This post has been viewed 527 times
- December 8, 2018 at 11:18 pm #8499
Hello fellow PWN! This is my first post. I’m very happy to find an active narcolepsy forum!
I have been taking Xyrem for a couple years now. I take two doses a night, 4.5 g per dose, 4 hours apart. It plunges me into deep, dreamless sleep (for a while, at least) twice a night, and it has reduced my EDS (before Xyrem, I took at least two 2-hour naps a day; after Xyrem, I take one 45-minute nap a day).
When I started taking Xyrem, I followed the instructions carefully, not eating anything within 2 hours of bedtime, and swallowing the dose (diluted in 60 ml of water) with a small amount of sugar-free fruit flavoring for palatability. It tasted awful, even with the flavoring, and I began to dread taking my bedtime doses more and more.
After I’d been on the same dose for several months and knew how it affected me, I decided to try taking it with food to mask the taste, curious whether that would reduce or delay its effect.
My first attempt was to stir the dose (diluted with water) into about a quarter-cup of hot potato soup that I had made without salt. The Xyrem added just enough saltiness to make a very bland potato soup taste good! My experience was that taking Xyrem with soup did not reduce its effectiveness in any perceptible amount, but it did seem to take longer to take effect.
Later, I changed from soup to oatmeal, which is faster and easier to make. I reheat a quarter cup of unsalted oatmeal in the microwave for about 20 seconds, add a teaspoon of maple syrup, and stir in the Xyrem solution. It tastes yummy, and I have not noticed any reduction in effectiveness, even with the added sugar (maple syrup).
More recently, I threw caution to the wind and even allowed myself to eat other foods within the 2-hour bedtime window. No matter what I eat, no matter how much, the Xyrem still works just as well as it did when I fasted. The only difference is that it takes a little longer to kick in, which is not a problem for me.
It makes me wonder whether anyone else has taken Xyrem with food and had good results. Surely I’m not the only one who hated swallowing salt water and dreaded their twice-nightly dose?February 1, 2019 at 12:40 am #9011
I used to mix my Zyrem dose with 1 oz of apple juice and one oz water. It masked the saltiness and made it more tolerable. The flavor does not bother me anymore so I just mix it with water.February 1, 2019 at 3:46 pm #9013
Hi and welcome to the forums. I will say here that whatever works for you is the right thing to do. I have had folks tell me that they have had to mix their medication with foods or drink just to be able to take it, and I have had others with a poor result. In our practice we have many of both types.
My thoughts are just this: Every person is different what works for one will not work for another, as you scroll through the posts on this forum this will become very clear. You have been on this medication for some time now and probably know exactly what works, stick with it .
I wish you all the bestFebruary 13, 2019 at 8:02 pm #9074
New to the forum myself, and was wondering about this little issue as well. I have tried to research it some, but I can’t seem to find the answer exactly.
With the drug sheet that comes with Xyrem, the tests that were conducted explain that high fatty content foods leads to decreased concentrations in the blood by over 50% etc etc. I guess this has to do with Xyrem being absorbed in the fats, broken down differently or passed without being broken down or something to that extent.
Does this apply to carbs too? apple juice or the like? If anything, I would think placing anything in your stomach would turn on the digestive mechanisms and would speed up the metabolism of the drug? just a thought. I’ve been just taking it as prescribed for now, but I hesitate 2 seconds longer each time.
I guess in Idreamofnapping’s case it doesn’t affect anything and everyone is different, but I’d love to see something out there about if it matters what we eat. My guess is nothing has been tested but fats, so they just say stay away from everything. (this also brings up the question of acidity of the stomach and if it works better or worse at different pH which changes if you eat, or what if you take an antacid?)
If anyone has links, or has anything from experience, my curiosity is bouncing with questionsFebruary 18, 2019 at 3:34 pm #9125
I take it straight, but if you take xyrem with lemonade, it tastes like a Margarita.
Medicine always gets absorbed faster on an empty stomach. It works more slowly if I eat, regardless of what I eat. I’ve been on xyrem for 8 years. If I don’t fall asleep immediately it gives me the munchies.February 20, 2019 at 4:06 pm #9155
Thank you all for your replies! I’m so happy to connect with others who take this drug! And also very happy to hear that others have tried taking it with food and are also curious about the science behind the “no food” rule. Yes, if I purposely try to stay awake after taking it, instead of lying down and closing my eyes, I also get the munchies! And my thumbs begin to twitch… such a weird feeling!
I guess I just wanted to put it out there for any folks who are new to Xyrem and really hate the taste and dread taking it, here are at least a few anecdotes of people who broke the “no food” rule and still found the drug to be effective. Just maybe steer clear of high-fat foods!February 23, 2019 at 5:33 am #9220
You could also dilute it with more water, like an 8 ounce glass. That actually tastes nice. When I said I take it straight, I meant with water. I misquote, straight would be with no water.
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