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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 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
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
Is anyone out there taking Wakix? Has it helped you? My concern are side effects, etc. Let me know what you think of it. Thanks!😴
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
Don't fight it, go with the flow, and great tips above.
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.
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
Does anyone feel embarrassed by having narcolepsy? It use to bother me really bad. I accepted it a few years ago & was able to finally talk about it…now that people see that I’m more active than I use to be & try to depend on me to do things on time is starting to really bother me again
Yes,Jeanne..I feel the same !!
