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I have this black fleece zip up vest that I have purchased over and over. My kids call it my "uniform". I started wearing it when I had to work as a front desk manager at a hotel. Even my co-workers… read more
Why on earth does narcolepsy take so long to diagnose? I've been trying hard to find some sort of logical, rational explanation, some sort of justification, but I can't find it. I know it's not a well-known disease, I know we can't expect people to know there's some sort of neurological issue with lack of orexin and an autoimmune reaction behind our symptoms, but although friends, family, doctors may not know the exact cause of the symptoms, I think they know and can see we are not well and are… read more
Hello, Rina- I don't know how your lumbar puncture went, but... People with Narcolepsy Type 1 will indicate very low levels of Orexin/ Hypocretin and usually have cataplexy
Now the tricky part-… read more
This past year I have come to realize that I have such a hard time getting myself in that mind frame to “go to bed”. Don’t get me wrong, it takes me only minutes to fall asleep, it’s just a matter of settling down to go to bed. I have tried no caffeine after a certain time, to no cell phone/computer use but I just have a hard time settling down. I have read where insomnia can occur. Does anyone else have this issue and if so, what medications (if any) can help this??? I do plan on talking to my… read more
I take trazadone as well to help me to sleep. Having a disordered sleep schedule causes this IMHO.
I take Cymbalta for my depression. Not only does it act like a stimulant, it also reduced my fibromyalgia pain by about 90%. I do need to take propanol, a blood pressure med, to stop my racing heat… read more
I have never felt caffeine making much of a difference in my wakefulness, perhaps because I never ingested enough to make a difference. But even if it could make a difference, my doctors tell me not… read more
Cold and dark I will never get up. I'm from the tropics. So the heat does not make me sleepy.
Hello. My son is 11 years old and was diagnosed when he was 7 years old. I have a question about rest during his school day. Today he rests for an hour around 11. I wonder if you would prefer several short sleep breaks instead of one longer one? Do you feel as rested after 60 minutes as after 15 minutes?
My son does not take any medication and school works well and he has good support from his teachers.
I honestly think it’s amazing that he had the self awareness and confidence to say no to the medication, which is another clear indication that you as parents must be an amazing support system for him… read more
Agree it’s so frustrating! My aunt came in from out of town and my family all came over for dinner. After we ate I was standing in the kitchen and my sister looked at me and she said, “you’re having a… read more
When my narcolepsy kicks in for me it sort of feels chemically induced as if I’ve taken a hand full of Ambien vs not sleeping for a few days. It’s almost like I get this slight feeling down the back of my neck, it’s hard to describe. Does anyone else get this as well?? BTW I don’t have cataplexy, not sure if it makes a difference. Please let me know if you know what I’m talking about and can describe it in your words.
It surely does!
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