Quick Links
About MyNarcolepsyTeam
Powered By
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’ve have sleep apnea yet after 21 years of dealing with sleepiness I’m getting frustrated on which sleep disorder is happening. Starting to have a paralysis upon awakining each morning k
Start with a day & all night sleep study with sleep doctor
And read about the test retest reliability of the test. It surprised me.
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 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.
Don't fight it, go with the flow, and great tips above.
I have a lit of symptomsit is driving me crazy
I agree that something is in the air and the window of compassionate doctors is growing thin. They make patients go through hell and back to get any diagnosis these days. I noticed a big change during… read more
I was diagnosed in 2015 which was my first and only test; should a patient be tested again after so many years
@A MyNarcolepsyTeam Member Hello 👋🏾
I am also waiting for another study
Which is scheduled for August.
Hello
So quite often I get off of my sleep schedule simply because my mind does everything to avoid it. I stay up until at least 3 a.m. sometimes because I just.. can't bring myself to sleep. If I put my head down I probably could fall asleep but I seem to have something pulling me away from it. I don't know if I'm bothered by my nightmares more than usual sometimes or what
Generally I try to keep on a very strict sleep schedule but when I get off of it it is very frustrating.
Does anyone… read more
I have this happen all the time working with my dr. To improve it's not easy hang in there
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
