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 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
PS - I have taken Ritalin and Venlafaxine for years. Ready for a change!
Xylem makes me very hungry, if I eat, then the xylem medication doesn’t 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?
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!
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?
Here is a photo of the tea
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?
I am considering asking my doctor if/when possible I may try this medication. First wanted to find out how it has worked for anyone who has tried it.?.
I am very new to this site (first time ever reaching out to any support group!) I am still learning how all this works. Hopefully I'm using it correctly. Knowing y'all are "out there" is… read more
I've tried almost all of the narcolepsy meds and nothing worked. I'm on Adderall 20mg 3 times a day... which barely work all day, and I take Trazodone 150mg at night (which work great) to sleep.
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
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