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Don't fight it, go with the flow, and great tips above.
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
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.
I am currently living with my parents because I can not afford to live on my own. There is no other options for me right now but I just do not know how much longer I can put up with my mom. She never has understood and I don't know if she ever will.
Ask Her if She would be willing to go to the Dr. with You. Maybe he/she can explain the situation.
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.
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
Not having the best results, definitely need something better. I still get quite tired by lunchtime and often have a hard time not dozing off. What do you take now and does it work? Any helpful tips… read more
