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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
Hi everyone, I haven't had time to check into seeing about my sleep study that my doctor wanted me to do after I told him my medication after 16 years doesn't do as well. He is a family practitioner and doesn't know that much about narcolepsy and told me to go get another sleep study done. The more I research about sleep studies the more scared I become. I've seen where some are not accurate. And another thing I dont think I can go without my anxiety medication and we have to stop all… read more
They didn't tell me to stop my meds.
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.
Don't fight it, go with the flow, and great tips above.
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
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!😴
Narcolepsy can be associated also with less conspicuous problems, including introversion, sorrowfulness, feelings of inferiority, impaired affectivity modulation, emotional lability, irritability, aggressiveness, and poor attention that some authors have defined as the “narcoleptic personality” (4).Mar 18, 2020
I NEED to share this: my violent dreaming ALWAYS involves family, and is so terrifying I can hardly bare to speak of it. O er the last 2 years, the violence has evolved to sadistic trickery: my… read more
Is anyone currently being treated for narcolepsy for dopamine inducing sleep peptides? If so - do you find them effective?
