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From what I understand about type 2 narcolepsy, interrupted sleep cycles seems to be the central issue. I was prescribed modafinil which gave me the worst headache I have ever experienced and seemed to get more severe with every dose. I completely stopped sleeping and after a week, I stopped taking it. I can't sleep more than a few hours without waking up and I never feel rested. Why wouldn't I be prescribed something that helps me sleep?
I swear by my armodafinil, but psychotropic meds will always be different for different people. They are coming out with more meds that may be worth trying. And pill cutters. Everyone is different.
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
I used to get low appetite when I'm sleepy during the day and hunger attacks at night when I wake up. This in the long run led to undernourishment. Thankfully, my neurologists have prescibed a… 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.
It sounds like he is suffering from depression also. That needs to addressed so he can feel better. Depression makes you tired during the day also complicating narcolepsy.
Hi everyone 👋🏻 Wondering if anyone else here has type 2 narc? (Narcolepsy without cataplexy) I’ve tried researching it but even less is known about type 2 than 1. Just going through the motions..
I was told I have narcolepsy from a doctor but never had the sleep test to see what kind I have!
Has anyone had experience or know about biofeedback headbands that monitor sleep cycles and provide binaural beats that can help regulate sleep cycles? I came across an article about a Colorado engineer that developed a device foe his teenage daughter that was diagnosed with narcolepsy. He marketed the device under the name Sleep Shepherd Blue. I started trying to find the device and came across another called Dreem. Seems that both devices were purchased and removed from the market by someone… read more
I researched these as well, and came to the same conclusions. I did find a Dreem 2 for sale in India. https://india.dreem.com/. I have not reached out to them to see if they will ship to the US… read more
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 hate to answer this question because my BEST DAY is Thursday is my first day off I sleep the whole 24 hours my children are grown I have a dog I do take her out a couple times but I do not get out… read more
Don't fight it, go with the flow, and great tips above.
I don't know - selecting people for my "team" seems playing favorites with people I don't know. That seems weird to me.
I regret your negative experience Lisa. CBD can be purchased locally (my home in sw La.). My online purchase came from Able Farms. They have a "CBD Sleep Dropper". My current prescription sleep… read more
