My Doc Said There Is A Medication (name?) Distibuted From A Central Location (highly Controlled). Anybody Know Anything About It? | MyNarcolepsyTeam

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My Doc Said There Is A Medication (name?) Distibuted From A Central Location (highly Controlled). Anybody Know Anything About It?
A MyNarcolepsyTeam Member asked a question 💭

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

posted March 5, 2021
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A MyNarcolepsyTeam Member

The most likely med he is talking about is Xyrem. It is distributed from the central pharmacy because it has "other" uses (like date rape) so it is a schedule 3. It is a very salty liquid that knocks you out for 4 hours in about 15 minutes. You get much better sleep. You take it 2x a night.
I respond well to it when I can't sleep.
It's worth a try... it's not scary if you know you are taking it.

posted March 6, 2021
A MyNarcolepsyTeam Member

I was denied by insurance for the xywav so I'm still on xryrem. And have to have dexadrine to get thru the day. If I'm taken off either of them I'll be in bed all day every day.

posted March 24, 2021
A MyNarcolepsyTeam Member

@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 actually sleep. Still can't get off Venlafaxine for cataplexy. The brain buzz and the securely side effects are reason enough to get off it, but absolutely couldn't function without it. Keep researching you'll find what works best for you.

posted May 15, 2021
A MyNarcolepsyTeam Member

I’m on Xywav because I had problems with Xyrem. I also take 200mg of modafanil plus 30 mg of Ritalin twice a day & I still yawn all afternoon. I’m having a problem with my dr who wants me to stop the Ritalin but I know if I do, I won’t be able to work. He thinks the Xywav will fix everything but it doesn’t. It really helps. I hadn’t fallen since starting it till last night when I fell out of bed from a nightmare,

posted May 14, 2021
A MyNarcolepsyTeam Member

I take Xywav which is Xyrem without all the salt. I had severe edema & a tremor. Switched to Xywav and feel great! I feel much better during day but still need my Ritalin & Modafinal. My doctor wants me to wean off the Ritalin but I don’t think I can.

posted March 15, 2021

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