Hi guys been awhile since I've posted. I've had increasing trouble swallowing while eating, I thought it was something else like muscle weakness from a neuro issue or something. But now I'm thinking maybe it's narcolepsy microsleep episodes. I haven't started any treatment yet because I have trouble swallowing (pills especially) but I need to try treatment because I'm going to literally starve to death if I keep having these issues while eating. Here is what it feels like, 1st I'm tired all the… read more

I have a teenager with narcolepsy who is really struggling. He has had averse reactions to medications and has a hopeless attitude. I can see how much he is struggling and suffering. When I try to help him and make suggestions, he gets angry with me and frustrated. He has a lot of supports in place but he is in the worst place right now. How do I support him and support myself at the same time? It is so hard to be a mother and feel this helpless.

I want to know about one of your best days you have had with your narcolepsy. Tell me how you felt, who you were with , everything.

I have been taking adderal for a good 15 years. The highest does and is not helping. I took adderal originally for adhd. But it doesn’t seem to work anymore. Do you have any suggestions?

so for the people that take xywav/xyrem, and happen to live in tornado alley, what do you do when the weather is bad overnight, and you have to work the next day? luckily, im off work right now but the way the recent storms are hitting, if i was working, it would be messing up my medicine schedule and im not lucky enough to have bosses that understand. how do these factors impact you?

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?

Three months in a row I have struggled to get my Nuvigil 200mg (60 count) rx. CVS always has it on backorder, and now my new pharmacy took 5 days to get my meds. I work full time, so I make a lot of mistakes when I am unmedicated.
Anyone with CVS caremark? What is a less stressful way to get your meds on time?
Idk if it's my state... PA only allows 2 days before the rx is out, and no auto refills. I can't keep going through this, and I know I'm not alone. :(

I don't know - selecting people for my "team" seems playing favorites with people I don't know. That seems weird to me.

At 62 I still have those in my life that reguardless of drug test, doctors reports or any of the many items provided to help them understand. There are some who are going to believe what they want to believe. They still talk behind my back about it and some of my own family have chosen to keep their distance so they don’t have people think they are on drugs. People with little understanding and no ability to learn the truth are quick to place a label on anyone who is not exactly just like them… read more