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'm going to purchase luminette 3 glasses to help with my EDS. (Edit: I removed "blue" from my question since I noticed I may have misnamed them.)

I have recently been diagnosed with narcolepsy without cataplexy. I'm on Adderall 30 mg 3x daily. I've noticed if I don't get a good 10-12 hours of sleep, my Adderall won't work as well. I still have severe brain fog, embarrassingly amounts! I have nightmares so realistic I have to go check on my family. My doctor said he doesn't want me on either med typical for narcolepsy as it can cause Steven's Johnson syndrome. What can help with this? Medicine or otherwise. Thank you
Miranda Dodd
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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?

Since the hypothalamus gland is affected what type of symptoms have you experienced besides excessive sleepiness?

Not sure if all of my bizarre symptoms are directly related to narcolepsy but some might be.
The symptoms I am trying to figure out are :

Low grade fevers (10-15 per month)
Subclinical hypothyroidism with normal t3 &t4
Extreme chocolate milk craving (about 40oz a day)
No appetite, without weight loss , no thirst either

Very interested in others symptoms, sometimes patients can… read more