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What's One Thing About Narcolepsy You Feel Isn't Talked About Enough?
My cataplexy begins with weakness in my legs, then my body falls down. I’m aware of my falling until I hit my head, then I lose consciousness.
How Does Narcolepsy Impact You Emotionally?
I’m also a nurse. I am on disability. I’d really like to go back to work though, I’m trying.
Does Anyone Else Deal With People Who Don't Believe Narcolepsy Is A Real Disease?
I have been diagnosed for almost 3 years now and I still have family members that believe I'm just lazy. On my bad days I can sleep 19 hours a day or more. If I'm cold I go into hibernation mode and can't wake up til I warm up and some of my family act like I chose to sleep. Luckily my husband isn't like that. If y'all had similar experience how did u deal with it?
I am very fortunate. My psychiatrist and neurologist talk to each other. My medication are monitored by both and they work together. I want people to understand. You can require a consultation with… read more
Do You Experience Insomnia With Narcolepsy? Any Ideas To Help With Insomnia?
I noticed that my anxiety medication is definitely helped me sleep but some of them have a side effect with gaining weight what was that one I took Klonopin or clonazepam I really need to think about… read more
Can Someone Please Help Me Understand Why Narcolepsy Takes So Long To Diagnose? What's Wrong With Our Society?
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
What's A Common Misconception About Narcolepsy?
When describing the symptoms of narcolepsy, excessive sleepiness is overstated while tiredeness is understated. Personally, I 've been feeling tired the biggest part of my life. Sleepiness by means… read more
What’s The One Thing That's Helped You Most With Fatigue?
Yes...it is great.
In What Ways, If Any, Has Your Narcolepsy Affected How You Consume Alcohol?
I don’t even drink because most of my day consists of a lot of meds
What Does A Typical Day Look Like For You Living With Narcolepsy?
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
How Well Does Modefil Or Provigil Work For EDS And /or Cateplexy?
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