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June 16
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A MyNarcolepsyTeam Member

yes i started taken this years ago but didn’t have great results i would sleep up to 2 hrs and then awake and take second dose and then sleep for 2 additional hrs which isn’t much sleep, but im on the lumryz now and although it only allows me to sleep for up to 4 hrs i find it better for cataplexy and hallucinations but neither drug offers me the needed sleep that i would like to get

June 19
A MyNarcolepsyTeam Member

Hello Andrea. I have not taking Xyrem but I'm sure it's one of many drugs that will work. Just have to find the right one. I am on my fourth medication and it seems to be working after only two weeks. It's called Wakix and it's expensive $3500. a month and luckily insurance pays for it.

June 16
A MyNarcolepsyTeam Member

I was on Lumryz for a while and it was awful!! I would fall asleep for 2 hours-which I already do anyway-and then wake up needing to use the bathroom. When I would get up to go, I was so drugged and high feeling I had to crawl. My husband would often find me on the floor and have to help me back to bed. Even on the highest dose, it didn’t keep me asleep. The last night I took it, I ended up on the bathroom floor with no feeling in my arms and legs. My husband hears me crying and has to carry me to bed. My whole body went numb, and my husband said I felt ice cold. I imagine its how women feel when they get drugged-somewhat awake but unable to move. Overall, It was an awful 2 months, neither of us slept well at all. He stayed awake to listen if I got up, and I didnt sleep anymore than I normally do, plus I had to deal with feeling drugged.
The high sodium content bothered me as well, so I had to watch what I ate more than I normally do. Planning dinner was also a challenge at times, because I had to wait two hours after eating to take the medicine, and there are nights. I don’t get off work until 7 o’clock. Basically, it affected my whole day, and then didn’t even help me at night. I will never take Lumryz or ones similar to it again.

August 14
A MyNarcolepsyTeam Member

Xryem ws horrible it thru me into the worst state of sleep paralysis ive ever experienced

July 27
A MyNarcolepsyTeam Member

Thank you this is very helpful I’ll give this medication a try.

June 24

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