I think it's hard for people to understand because they haven't had the problem. It is awful to feel so tired all of the time even though you are sleeping all the a lot. I'm sorry you're not getting the support you need. It stinks!

For a couple of years I tried to control it by taking Adderral but that is not good for your heart. I take Xyrem now and I get much better sleep. I'm still adjusting but I felt better after the first night of taking it. I haven't napped once! Occasionally I take Adderral but I hope I won't have to in the future. I am at the full dose of Xyrem now. Only the 2nd night so hoping I will adjust and not need to take anything else.

I was afraid to take Xyrem but now I recommend it. I hate there is no cure for N! You rarely hear anything about it. Maybe your mother needs to talk to someone about N who can explain that it is very real and you're not being lazy. Maybe your doctor. Maybe you need to try something else too treat it.

Sounds like she is trying to be helpful and doing it the only way mom knows how.

It also reminds me of how my BF sometimes thinks of my son's N. Sometimes it actually helps me to find ways to educate him during this time and teach him exactly how to be supportive so that he has some direction to put his energies. I'm not saying it works all the time...or even half the time...but it often helps me in feeling I've properly addressed/defended/articulated the situation.

For example:
"Right now we are working on ______ in terms of sleep hygiene. If you have any suggestions on addressing _____, please share."
"What you are describing is actually a behavior problem. It is tricky for even the best of us, however, what he is struggling with right now, these_______ (hypnogognic hallucinations) are a neurological dysfunction. It can be so scary to find yourself in a body, in a mind that is working all wrong. Please be sure to address the neurological component when trying to help."
"This is all very confusing for even some of his best Dr. I really want some good support. Can you please come to his next meeting with the Dr. so that you can know what direction his Tx is headed and what it is all about"

One of the best moments was when my BF did attend a meeting with the Dr. I think the Dx became more real for him at that moment. He got to see the Dr. congratulate my son and I for our efforts, he got to see how hard work we do put in, He got to see that the Dr's approach was coming from a different level of understanding about the disorder. He got to actually experience the stress and importance, leading up to the visit, inside it, in the waiting room, my tears in the car ride home. I left getting to say for future soapbox defense, "remember when the Dr said that we were going to work on this one thing?" "Well I trust him and will be following his advice, it will help us to be successful to follow the progression of things the Dr. advises and maybe what you suggest will be introduced in the future, for now the focus is _________"

Thank you for your replies, it means a lot.
I'm working on reminding myself that she is seeing it through a moms perspective. I know she hates that I have this life long disease.
I had been keeping quiet about how bad my nightmares have been but after mentioning them she better understands or accepts that I will be even more tired after nights with them.
She has read some info on N but I think because it was just data and didn't contain examples of how people actually feel having N that maybe that is what is making it harder for her to really grasp the things I tell her.
Kind of like how she didn't really understand how off-putting intense palpitations feel until she had a few episodes herself. I explained that those few seconds she felt I feel times 100 for hours throughout the day.
Xyrem is off the table for me right now in part because I just cannot afford it and my cardiologist is concerned about how my heart would handle that kind of sedation.

Thank you so much again, really!

Xyrem has a program for people who cannot afford it so that should not be an issue. The sedation is not that heavy. I can wake up and can even walk to the bathroom --a little wobbly but I can. It is short acting so you take 1 dose at bedtime and another 3-4 hours later (when you wake on your own or by an alarm). If I had to leave in an emergency I could scoot down the stairs.

I would definitely make sure that it is safe and the Doctor's would make sure of that as well as the Xyrem program. I've had no issues whatsoever.

It has made my life much better and everything I was having trouble with is now better. I don't think there is anything else out there that will do what this will do. I hope you find something that works because you cannot live without restorative sleep without serious health consequences.

Maybe we need to post to gather a collection of YouTube videos or pamphlets? Things that someone can easily watch or read to elicit a compassion of "walking in our shoes?"

Really, it is unimaginable what my son has gone through and goes through... From hallucinations in waking hours...to something as simple as realizing that neurologically speaking, N pple often have time management issues because of their brain function. There is so much to it that is hard to convey even to pple close to us.

Hey! First off, hang in there, I'm in the same boat, about 4 yrs past diagnosis and the # of people that know is still < 10.

My mom is the person I talk to the most but she also struggles a lot with understanding, partly because my symptoms only surfaced once I went away to college.

I've found that the biggest thing to understand is that moms can't stand to see their children suffering, and want to believe they can fix them. That's why my mom struggles with my condition a lot more than my sister's migraines - she knows what a headache is and how to help.

The other biggest thing you can do is to explain to her that N is at least partially "egosyntonic". Now, I'm not sure if this is how a doctor would officially classify N, but it's a word I learned in psych class that helps with explanations.

Basically, normal diseases or something like OCD are "egodystonic" meaning our brains know that what's going on is wrong. But if something is "egosyntonic", like fatigue problems, depression, or eating disorders, it feels "normal" until you have the hindsight of the next day or being back on your meds. So we can't just "be less lazy" or "just get up and move" because when we're tired we can't really recognize "this isn't me, this is my narcolepsy".

The last thing is, if she's willing, ask her to do some research about how sleep works and try to explain that we suffer so much because our sleep cycles are off. (REM v. RAM) We don't just dream, we always dream. And we don't sleep like normal people, we never get to have deep sleep like they do, so we never really recover.

Best of luck :D

sbenzzz, thank you for that word: "egosyntonic"

It will come in handy when discussing things with my son, such as meds, his affect and how I observe things differently than he does.

I think a support group for relatives of people with Narcolepsy. But with members included who understand it to enlighten others. And sleep disorders are hereditary! My mom has restless leg syndrome and brother has sleep apnea. Sister had trouble too but not causing any issues just like mine didn't until recently. So someone in your family must have a sleep disorder too.

And I'm fortunate that my mother listens. Probably helps that I'm 55 but I think at any age she would understand because of her restless leg syndrome. And my brothers sleep apnea that was diagnosed years ago so when his wife noticed he stopped breathing while asleep.